Nevaeh Kaylene's Journey

Frustration... again:0(

2011-04-17T15:34:00.002-04:00

Okay, so I know I've again become a blogging slacker. Guess having anywhere from one to 4 extra kids in the house everyday takes up so much more of my time! (and my mind;0) Things have been going fairly well here. That is until the phone call I received this past Friday afternoon at 5:15PM. When I looked at the caller ID, my heart kinda sank. I knew it probably wouldn't be a good conversation once I picked up the line. Despite that sinking feeling in my tummy, I went ahead & answered the phone... "Tina, this is Maresa at Dr. Butto's office. We were wondering if it would be okay to push Nevaeh's heart cath back until May 26th." "Are you kidding me?!" This was my exact response to her question. Of course she answered yes. "We've had an emergency case come in & Dr. Butto was wondering if we could re-schedule Nevaeh's" I'm pretty sure she could sense the frustration & disbelief in my voice as I explained that Jon had alreay scheduled off work. I had already re-arranged things for my schedule, as well as Gabie's. She seemed kind of taken aback as she told me that she would check with Dr. Butto about keeping her on the schedule. She told me she would call me back. I'm currently waiting on that return phone call... grrr! I don't think that hospitals or doctor's office staff truly understand how frustrating it is to have to reschedule things. I really do understand that there are emergencies... Vaeh has been bumped twice when on the schedule for open heart surgeries. But this one really perturbed me. Seriously, you wait to call a family of a child having a cardiac catheterization in the coming week on Friday afternoon, basically after business hours? If its such an emergency, then why can it wait a week & why isn't the first procedure of the day being bumped instead of us? Not to mention, we have to come from 90 miles south of your facility for this procedure... not just a 20 minute drive across town. So, I'm hoping that Monday morning brings news that won't totally disappoint me or stress me out for another month waiting on this to be done. You would think there would be some better organization, here. Sorry for the quick vent, but this is the life of a CHD momma! Hope everyone else is doing well! I'll post all the fun details when I get them:0/

We are scheduled...

2011-03-18T15:48:00.002-04:00

I feel so out of practice. Vaeh's cardiologist's office called yesterday when I wasn't at home, so I called back to schedule today. I had been praying that we would be able to do this cath at the hospital Dr. Butto is based at, but I found out today that it has to be at another hospital, across town, which we have had some trouble with how they've treated Vaeh in the past.
She is scheduled for noon on Thursday, April 21st. We're not sure yet when she will have to go in for her pre-op testing, possibly the Wednesday before. But knowing that she is the afternoon case, I'm hoping that we will be able to do it the same day... but I'm not holding my breath:0/
I've had a flood of emotions already with this one & its only been scheduled for a few hours. I think knowing that he may balloon her pulmonary arteries has me a bit more on edge... its always such a difficult process for him to get access to her PA's (thanks to that lovely octopus in her chest that's comprised of her PA's). The last time she had ballooning, it was a marathon 4 hour cath... ugh.
It does work out that Gabie will be out of school those days for spring break, so that at least takes one thing off the "to do" list. I just don't like having to explain this to my 4 year old... she's getting to big & understands now. Let the fun begin :0/

Upcoming...

2011-03-15T22:10:00.002-04:00

So we returned for Vaeh's follow up visit with Dr. Butto yesterday. She was first on the list, so we buzzed right in & right through, until we had to wait for Meghan ;0) She's one of the gals that does the echos & she is fabulous w/ Vaeh:0) The echo went well, with Vaeh actually cooperating quite well through the entire thing (usually she starts to get a bit squirmy toward the end) Believe it or not, the little stinker actually grew about 1/16th of an inch & gained a half a pound in 4 weeks... wow! At this rate, she's gonna be 7 foot tall! Okay, maybe not quite that tall but she can slow down a bit in the growth dept! She's even been asking about when her teeth will begin to fall out... ya know, since Sissy is loosing her teeth;0)
Dr. Butto came it to look at her echo & said that "in effect" nothing has changed! Her pressures have remained the same even without the revatio. He had actually expected them to spike a bit, he told me later. Everything looked great! I then had to ask the looming question... are we looking at a heart cath? I think that Dr. Butto wasn't feeling the greatest, because he gave me a somewhat blank stare. Then he told me we would go back to the clinic in Lima in 2 months, & we'll do another heart cath between now & then. So, sometime next month we'll be heading into old familiar territory.
Its been 2 years since Vaeh has had to have anything done, so this is gonna be a strange experience. Although since this is number 7... we'll probably slip back into it like riding a bike - unfortunately :0/ I'm really dreading having to explain things to her this time, since she is old enough to understand so much more than the last time she had to have anything done. I am praying that it is able to be done at our favorite hospital... I know it will be a much better experience there:0)
For now, we just enjoy life without meds. No more syringes sitting by the sink, ready to give her meds (for the first time in over 4 years, I have my counter top back:0)). And we wait to see when this next round is scheduled for...

Winter Fun!

2011-03-09T16:37:00.009-05:00

Isn't she just adorable?! Okay, okay. So I'm a very biased opinion here - LoL! This photo is from a couple of weeks ago when the kids had a snow day on a Friday. This was followed by another unexpected day off on Monday due to flooding. We had gotten about 7 inches of snow on Thursday night/Friday morning, which was followed by a spring-like warm up with a couple of inches of rain. All of the melting snow followed by 2.5 inches of rain = lots of water! This is what we had to deal with on Friday (which the kids thoroughly enjoyed, I might add!)...

And this is what we had to deal with on the following Monday...

This was taken at our high school's football practice field. You can see the 'sleds' they use for tackle practice halfway under water. Thankfully we live far enough away from the river that we weren't affected. My in-laws were a bit closer to the action...

Their house is just on the other side of that large evergreen tree on the right side of the photo. Quite the change over the course of a couple days, huh?! Gotta love Ohio weather... okay, well you don't have to love it, just deal with it if you live here!

So this particular Friday, we were actually able to get outside & enjoy some snow time & the girls were able to build their first...

snow-bear?
She started out as a snowman, but this snow was so wet & dense, that the moment you picked it up it hardened! We had to mold this lovely instead of rolling her, so we added a few touches here & there... bam! Our first "snow-bear"! The girls both had a great day & enjoyed themselves playing outside. Especially since it was the first time they'd been out all winter:0)

Since that day of fun in the white stuff, we've had, ah-hem, a "nice" couple of days bonding with the couch. Vaeh started off early Thursday morning, around 1:50am, throwing up. She was up all night repeating the same. Gabie got up around 3 & didn't fall back asleep until around 4:30am. I was debating keeping her home from school, when she made the decision for me. She followed her sister's game plan & started throwing up around 6:30. So, thus began my day of consoling my girls while they were not feeling so hot. Gabie ended up with a long weekend, missing school both Thursday & Friday. They both did pretty well on Saturday, until early Sunday morning when Gabie decided she wanted just a bit more attention;0) She had me up around 2 on Sunday, but was pretty good the rest of the day. So Monday morning rolls around & I figured we're finally back on track... WRONG! Vaeh decided to get sick one last time when she got out of bed... UGH!!! Guess she figured she needed a couple more days at home with Momma!
She finally headed back to school this morning & was ecstatic! As an added bonus to her return to school, her teacher also returned! Mrs. Raymond had been out a couple of weeks after she took a fall outside of the school one day when it was icy... & subsequently broke her nose! She's finally back on the mend & was in class today:0)

So next Monday marks our two week anniversary with NO MEDS! Vaeh has been doing quite well. There really haven't been any major changes with dropping the meds. I do find myself looking rather closely at things... does she look a bit dusky? Are her lips/nail beds purple? It stinks, because it really has me second guessing everything that she's been doing lately. Then tonight at supper, my Mom remembered to tell me that last night she & Vaeh were running to catch up to Gabie (Mom took the girls to Gabie's roller skating party for school since it was MY turn bonding with the couch:0/) & Vaeh told her the "I can't breathe." Wha...??? She said she recovered very quickly, & really didn't seem phased by it at all. She's been fine since. So now its a moment of "do I call the cardio or just wait since she's scheduled to see him in 5 days?"

After thinking about it, we'll probably just wait until Monday for her appointment since she's been doing fine other than that one, isolated incident. I'm praying that her appointment goes well & if we schedule a cath, that it will be soon!

Milestones

2011-02-27T21:48:00.003-05:00

When it comes to kids, there are so many milestones. There are the 'typical' ones that all parents look forward to: the first smile, sitting up, pulling up to stand, walking, amongst others. Each one is such an exciting experience in the life of a child. Both for the child & for the parents! Its something I always worried I would miss with Gabie. Some I did, but a lot of them I was blessed to be able to see! Her first steps, just before her first birthday, we were actually able to catch on video... I still tear up a bit when I see it ;0)

The night Nevaeh was born, I was running all of the 'typical' milestones through my mind. I can't wait to see her roll over, stand up, walk. Unfortunately when she was about 12 hours old, those milestones took a back seat to a new set: upcoming surgeries, procedures, medications & doctors visits. Once a child, a family in fact, embarks on their journey in this crazy world of CHD's, things take a much different path. Our journey included changing Vaeh's feeding tube & learning how to feed her with it, monitoring her oxygen & giving her O2 via a cannula, and MANY medications. Those medications began within the first day of Nevaeh's life. At one point she was on as many as 14 different medications every 2 hours beginning at 6 AM and ending at midnight. I would have syringes lined up at the sink for each of her different medicines and dosages, and a list taped to the cupboard so that other family members that came to help could keep track.

One by one, we were able to take away a syringe when the doctors decided to discontinue one of her medications. As time passed, the line up of those syringes became smaller. Its been a couple of years ago now that we were able to stop her lasix. That left her revatio (aka: viagra) which she was on for her Pulmonary Arterial Hypertension. Of course, she also has her nebulizer treatments that we still have to do prn (as needed), but the revatio is the only regular, oral medication she has been on since her lasix was stopped.

She started this medication almost exactly two years ago, to the day (toward the end of February 2009). When she started taking it, we had quite a time getting the approval for it as it is quite an expensive drug. Then once we got the approval, we found out that for the first six months, the pharmacy had been dispensing an incorrect dosage - half of what she was supposed to be getting! That was not a fun experience to go through, but we were finally able to get her on the correct dosage. It was about six months ago that we began to lower that dosage since her PA pressures had begun to come down. The hope was that if we could get her pressures to come down & stay down, without the medicine we could stop it.

Back in November, we again lowered her dosage for the second time to 2mL's ( half of the beginning dose). On February 14th, we again saw Vaeh's cardiologist for a follow up. Again, her pressures had maintained at a low enough level that Dr. Butto said to lower her to 1mL for two weeks, & then... are you ready for it?!

STOP HER MEDICATION!!!!!! Yep, that's right! We are going to stop Vaeh's very LAST medication. I am sitting here in the living room, waiting for 11 PM to roll around so that I can give this...

for the LAST time!!

This last dose of her medication begins a "first" for Nevaeh... this will be the very first time in her life, other than the first 12 hours of her life, that little Miss V has not been required to take any medication!!! I am going to be able to go to bed at 8 PM if I want & not have to stay up so that I have to wake her up to give her some nasty tasting medicine... WOO HOOOO!!

She is scheduled to go back to see Dr. Butto again on March 14th for a follow up visit/echo to check her pressures without the medication. Then we'll probably head for a trip to the cath lab to get a true measurement of her pressures off the medicine. Beyond that, I'm not sure what life is going to hold for our CHD warrior!

I am so looking forward to this next stage of life for Vaeh. Of course, we will always have to watch her, always have to see Dr. Butto, always be on the look out for anything abnormal. That is the life of a CHD child. Maybe we will be able to go longer than 3 months between visits. Maybe six months or, dare I say it? A year?! We'll just have to wait to see what this next chapter holds for us!

Nerves

2011-02-10T22:37:00.002-05:00

Usually I don't get too nervous when it comes to Vaeh's appointments. I don't really remember being any bit nervous with her last appointment back in November. Its just become such a routine thing, if you can imagine that in this world of CHD.
But the past couple of days, those pesky nerves have been creeping their way back into my head. Vaeh's got a cardiology appointment coming up... during the last appointment he said that we would be heading to the cath lab probably in the spring.... are her pressures going to be better this time, too? Will they have gotten worse & he'll want to go to the cath lab sooner? Will he want to wean her off the drugs completely this time, or in another step? There's always such questions that crop up with these appointments. I know that every heart parent goes through these emotions/questions with any doctor appointment that comes along, even if their child has been doing absolutely wonderful!
I was sitting in the dining room with my Mom tonight discussing my nerves as the girls sat at the table cutting paper. One of Vaeh's favorite things to do is to cut paper... its her "homework" she tells me! I told my Mom how its so easy for me to slip into that "everything is fine" mode. Vaeh looks the picture of health these days. She plays with her sister & other kids, she goes to preschool four days a week. She lives each day of her life to the fullest... all the while being a child who lives with a CHD.
Its hard not to let my mind wander back to the days when I worried every day if she would survive. I used to check her in her crib several times a night to make sure she was still breathing. (Occasionally I still peak in on her just to be sure...) Here lately I even worry about her complaining of her leg hurting. Is it growing pains? Is it something vascular? Since we have a fairly significant family history with blood clots, & she's had some difficulty with that, that one crops up pretty regularly. When we do go back to the cath lab, will it be just a routine cath or is he going to come out & say that she needs another OHS soon? I really hate this.
I know that her appointment is going to go well! I have to believe that, or otherwise I think I would drive myself crazy. I know we're going to breeze through this one because she's doing so well! I just like to 'vent' my crazy feeling from time to time... so thanks for letting the blow whole let loose! LoL
Praying everyone is doing well! Remember to promote awareness this CHD Awareness week & always!

Junkies

2011-01-21T11:15:00.003-05:00

So, my hope for going through the winter unscathed by illness was dashed last weekend. Miss Vaeh had been coughing a bit, but nothing out of the ordinary. Considering there are 4 to 7 other kiddos here on any given day & she attends pre-school 4 days a week, she's been exposed to everything under the sun.

After a hefty coughing spell she ended up vomiting. Then the fever arrived... ugh. So last Sunday we took Miss V to urgent care for a chest x-ray to make sure it wasn't our 'friend' pneumonia. Thankfully, he has remained on vacation! (I hope he does permanently!) The doctor who was working in urgent care that day had actually worked out at UCLA in pediatric cardiology for a while, so he knew exactly what was going on with Vaeh's heart, so he was very understanding of my concern. After having the x-ray & a swab to rule out influenza, we had scripts in hand & were on our way home with a diagnosis of "asthmatic bronchitis."

Because of this round of "sickies" as they are known in our house, our buddy made a re-appearance:

Its been at least a year since we've had to use our friend, but thankfully Miss Vaeh hasn't forgotten him! She still holds it right up to her nose, after of course helping to put the meds into the cup & turn it on! After a week of neb treatments & an antibiotic, Vaeh sounds much better. She's still coughing a bit, but is almost back to 100%.

School was a "no go" for this week for Vaeh & Gabie was home one day & able to sleep in 2 other days due to ice/snow. Now starts the make up schedule for the kids. Vaeh won't have any make up days, but if anymore days are missed they will have to be made up at the end of the year. So, we'll see how far into June the kids actually go...

With CHD Awareness Day/Week coming up, a couple of other heart mom's that live here in our town & I are trying to get something in our local papers. There are 2 that we're trying for & today I am supposed to do an interview with one I'll try to put up a link to the articles if I can! How are all of you going to 'celebrate' CHD day?! Vaeh & I are planning a great day, including a trip to the cardiologist! What a great day to see her heart doctor, huh?! I'm hoping that our plan continues: weaning the revatio & then a trip to the cath lab. I'm guessing that sometime at the end of May, beginning of June is when we are heading in there. I'm hoping that we are able to get things scheduled around both dance recitals this year! The girls put so much work into dance that I don't want either of them to miss out on their special day!

Hope everyone is doing well! Thanks for checking in on us!

Okay, lets try this again...

2010-11-19T22:53:00.003-05:00

So I am horrible. That's an undisputed fact! The reason I am horrible.... its been two months & 3 days since I last posted. No, I didn't fall off the face of the earth. No, I haven't forgotten about any of my bloggy friends - in fact, I truly miss you all terribly! I have been keeping tabs on our extended family:0)

The past couple of months have been quite busy for us here. We've had some things going on that really had me a bit stressed & just not feeling very "bloggy" myself. Well, so as not to bore you all with the details, things are looking up! I'm in a much better frame of mind & am going to make a real attempt at keeping this blog updated in a much more efficient manner! My schedule is smoothing out now. I've been babysitting for about a year & a half for a couple that we go to church with. I've since gained three other little boys in addition to the first little guy that I've been watching & now his sister, too! At any given time I can have as little as one extra kiddo up to 4 to 6 extra kids in the house! Its taken some getting used to, but is quite fun! Its been really good for Vaeh to have other kids here to play with & interact with... not to mention having to share! That's been a good lesson for all the kids to learn.

Speaking of little Miss... she is GREAT!!! I'm sure some of you have seen on facebook, but we had our quarterly date with Dr. Butto. We were able to lower her revatio after her last appointment since her pressures were coming down. At this appointment, everything was right on the mark! She's almost 37 lbs, & just shy of 38 inches. Her blood pressure & O2 sats were nearly perfect (she had a bit of a stuffy nose, so her sats were a tad off that perfect mark). Then came the echo. Miss thing was in rare form for this one. She has done fabulous with them since after her 3rd open heart. Sitting very still, being cooperative. Not this time. Someone was a bit of a squirmy thing & the "troublemaker" showed herself again! Just bringing back memories :0) She didn't cry or anything, but she goofed off quite a bit during the echo this time. Even when Dr. Butto came in to see her.

Usually they have difficulty seeing the PA's on echo, but this time pretty much everything was a bit difficult to visualize. Despite the trouble she gave them, things still are looking great! Her valve looks good (no leakage), & her pressures.... CONTINUE TO COME DOWN!!! So, knowing that, he gave the okay to again lower her revatio to 2 mL every 8 hours! The plan as of right now is to return in 3 months (Feb. 14th) for another follow up with a trip to the cath lab in the spring. The way Dr. Butto voiced it was that he wants to have her off the meds before we go in for the cath so that he can get a true reading for her pressures.

I was so excited after her appointment, even with the knowledge of a return trip to the cath lab. That excitement escalated when I realized that when we get her off of the revatio, Vaeh will be on ABSOLUTELY NO MEDICATION FOR THE FIRST TIME IN HER ENTIRE LIFE!!!!!! I won't know what to do?! I'm already "bored" with things now. Don't get me wrong, I love being bored. But looking back to when we were first told of her defect, & with all of the scares we had in the first year of her life, to think that we are in a place where she will need NO MEDICATION is just amazing! Again, another miracle for our baby! This little girl never ceases to amaze me :0)

I hope all of you are doing well! As the weather turns cold, I pray that you all stay safe & warm! Chat with you all soon!

Geesh

2010-09-16T22:00:00.000-04:00

Yep, its official. I am a MAJOR slacker! I know, I know... there's no excuse, sorry :0). I guess I've just been in a funk when it comes to blogging. Its the only explanation I can offer. I have been checking in on all of you, I promise! I just haven't been in a commenting mood. There's been some 'behind the scenes' stuff going on here (that I won't bore you all with) & I'm trying not to focus on that! On to the good stuff! When it comes to the girls, everything has been wonderful!

We've actually had a fairly busy summer. We got to spend quite a few afternoons in the swimming pool! Gabie loved swimming last summer, but Miss Vaeh really didn't get much of a chance as she would turn blue rather quickly. This summer she tolerated the water so much better... and it turns out, she's quite a fish! My in-laws have an above ground pool, so we used it quite a bit. Gabie is now tall enough to touch on her 'tippy-toes' so she was all about "swimming on her own!" Miss Vaeh wanted in the water just as much as her big sister. So with a floaty suit (has a built in flotation in it) & arm floaties, she went for broke! She was all over the pool & even falling off of rafts that were floating. Getting her head wet - all the way under! I am such a proud Momma!

Vaeh did go back to see Dr. Butto at the end of June & had a spectacular appointment! She has grown a whole inch & gained 2lbs in 4 months! So funny to see such a weight gain when it wasn't that long ago that we were worried she wouldn't gain any! She's quite a tall, muscular girl! Her echo was great! It showed that her pressures were down from (@last visit in Feb.) 55-60 to 45-50. So, based on those numbers dropping... we're weaning her OFF the revatio!! I was absolutely floored! I had really prepared myself that she was going to be on that for quite some time. Not the first time my Momma gut failed me - keep reading;0)

We asked about putting her in dance & if there were any restrictions we should let the dance instructor know about. I have to admit that my brain still hasn't really comprehended what he said, but "tell them to treat her like a normal kid with a normal heart!" I was almost knocked off my rocker, so to speak. I think it really caught me off guard because a huge theme with kids with CHD's is that they have such restrictions, & for her cardiologist to use the term "normal" with regard to my daughter... lets just say I never thought he would use those two in the same sentence! He has told us in the past (right after she was born prior to her first OHS) that she will have restrictions when she is older, but for now "normal" is what we're taking!

This appointment Daddy was able to go since he was on vacation. Right before we left, he asked Dr. Butto if we were looking at a heart cath any time in the near future (my Momma gut had been telling me that a cath may be coming soon). The good doctor told us, basically "if its not broke, don't fix it"! Again, the 'Momma gut' was wrong... much to my delight! So, nothing big is in site for Miss Vaeh for quite some time! We do have to go back to see him in November to see how her pressures are doing with the lowered dose of revatio & hopefully we can drop it again! I don't know what I'll do if we get to the point of NO meds... I'll be lost! LoL :0)

Now fast forward to the first week of September... BOTH my girls are in school! Miss Gabie started first grade in a brand new building this year, & Miss Vaeh is back at her pre-school, actually in a classroom spot. So instead of going only one day a week, she goes 4 days a week & sees her PT one day! So I actually get regular time alone... all to myself! I'm not sure what to do with myself yet:0)

They also both started dance this week! Gabie is so glad to be back in lessons & I think would perform a recital tomorrow if I'd let her:0) Miss Vaeh is in love with dance! She loved her first class & is such a performer! I think Miss Renee (their teacher) is going to have her hands full!

So there's the "catch up" post! I know it was kinda all over the place, & WAY over due. I am going to force myself to get out of this funk & make an attempt at posting on a more regular basis! Please don't hold it against me if I don't, though;0) I promise to try to post some photos of all this craziness that's been keeping me distracted from my blogging. Thanks for checking back... praying all of you are doing well! I promise more to come... soon:0)

Beautiful Dancer!

2010-06-06T11:34:00.005-04:00

Kids grow up way too fast. That reality hit me smack dab in the nose this weekend. Even thought Gabie has been in kindergarten, & even Vaeh in pre-school one day a week, it hadn't really sunk in. There's something about seeing your daughter in make up that changes your perception...

This is Miss Gabie in the holding room before her recital began this weekend. Isn't she just adorable?! (Notice the TWO teeth missing! She pulled the second one last Saturday... again, all by herself! Yet another sign she's growing up WAY too fast!)Now just so you know, she will NOT be wearing make up on a regular basis for a very long time! This was just for the performance:0)

I asked her if she was nervous on the way up to the recital, & she said "No. I'm just going to do what you told me: do what Miss Renee said!" She was only in one number for this, her first year. But to watch her on stage, you would have thought she'd been dancing for at least a couple of years! The smile was there, she sang along with the song & did her steps perfectly!! (Yes, I am just a bit biased;0)) Here she is on stage...

Isn't she beautiful?! (Again, just a bit biased!)

It was so much fun watching Gabie blossom into a little dancer this year! Now the fun begins, because you know who'll be joining her in taking lessons next year, right?!

On another note... Congratulations to Dan, Megan & Elijah on the arrival of Samson! Welcome to the wonderful world of a family of 4!

Vaeh's IEP

2010-05-21T17:40:00.002-04:00

We had Miss Vaeh's IEP this morning, & it went well! Someone will be going to preschool 4 days a week next year, & getting some time with the PT once a week! Oh, & she'll be riding a school bus!! Guess that means I'm gonna have to cut the cord & let Gabie ride one, too:0/

They said that basically she is caught up, but is still needing some "fine tuning" on a few things, like jumping, hopping & balance. So those will be some of the things they work on next year. She'll start back up in September & go through June of 2011... wow, that's just not right! 2011?!?! Geesh, where does time go?!

As for Miss V now... well, we've been dealing with a fever, upset tummy & being sleepy. The sleepy part is affecting both of us:0/ Hopefully its just her 4 year molars coming in & nothing more. Her gums are looking quite white as if they are trying to come in, so hopefully that's all it is!

Oh, & we got some great news this morning... the little guy that I've been babysitting for became a big brother this morning!!! Congrats Josh, Abbey & Noah on the arrival of Adalynn Elaine! She's beautiful... can't wait to meet her!

Hope everyone has a great weekend!

Wow.

2010-05-18T15:33:00.008-04:00

Where to begin? I know that this is the longest I've gone without posting since I began this blog. Time seems to have gotten away from me. Life has taken over... in a good, "normal" way!

The latest has been getting ready for Gabie's dance recital coming up the first weekend in June. She's so excited! Dance classes started back in the fall, just as she was starting school. The dance season is coming to an end & its prep time for recital. So we took photos of her & my cousin Leslie (who is in her 10th year of dance... congrats, Leslie!), & Miss V last week so we could put them in the program. Here's the three girls together. We just had to include Vaeh in the photos... she wanted to be a ballarina, too!

Aren't they adorable?! I can't wait to see my little ballerina on stage! We're already planning for next year... two in dance class:0)

Miss Gabie also had another big day... her first Daddy-Daughter Dance! Her school PTO put the event on. They had all sorts of little things for the girls to do like getting their finger nails painted, having "tattoos" put on, & all sorts of little trinkets. They also had a spot to have their photo taken, too! Then it was on to the dance floor! Gabie & Daddy danced to "Butterfly Kisses". Made me tear up - 'sniff, sniff'! She had a wonderful time, & Daddy did as well. She even had a pretty little corsage for the night...

It pays to know people in the florist buisness ;0) ;0)!

Then another big first happened for Miss Gabie... she lost her first tooth! I couldn't believe it. I went to pick her up that day from school, & here she came with a little baggie. "Mom, Mom, I pulled my tooth today!" WHAT?!?! Boy she's not my kid... I was the one that let them go until they hung on by a thread. Not Miss Gabie, she pulled it right out herself after lunch at school that day. So they gave her a cute little treasure chest to bring it home in. And of course, that night the "Mole-i-nator" showed up (aka the Tooth Fairy). She's called "him" that since she watched The Santa Clause 2. My, she's growing up way too fast! See the big hole the tooth left...

Her permanent tooth is making its entrance, & in the process has helped the next tooth over loosen a bit! She can't wait for that one to come out, too!

As for Miss Vaeh... she's having fun being a normal happy, healthy 3 year old! She really enjoys going to school on Monday, as well as seeing "Miss Barb" for therapy. Her school year is coming to an end (along with Gabie's) & so we have her IEP this Friday. From what her therapist tells me, there's a good possibility that she'll get a 'spot' in a classroom setting next year. Which means that both my girls will be in school! Vaeh would go Monday thru Thursday for about 2 and a half hours each day, plus therapy time in addition! I can't believe how fast time has flown! It seems just like yesterday we were freting over her upcoming surgery to complete the repair, & now its been 2 years (May 15th) that she's been fixed! Simply amazing that 2 years ago, this is what my baby girl looked like...

And just look at her now!

(*PS - Jen - that card she is holding is the Valentine y'all sent her! She loved it & carried it around for nearly a month! Gabie had been getting birthday cards in the mail, so it really made her day that SHE got mail!)

Overall we're doing really well. Things are tight, but who doesn't have that problem these days?! I'm trying to add another kiddo to my babysitting list, other than the one that will be arriving this Friday to her Momma & Daddy! (Congrats Josh, Abbey & Noah... we can't wait to meet her!) Just trying to live life to the fullest! This is the first summer that we won't have to worry about going outside to play... Miss Vaeh is doing quite a good job of keeping up with her big sister!

Redonkulous

2010-03-23T09:42:00.004-04:00

"Redonkulous." That's the only way I can describe my lack of blogging lately. Can you tell that the girls have been watching "Bolt" lately? Vaeh's been going around saying "that's redonkulous" here lately, & if you've every seen "Bolt" you will recognize that from the pigeons! She's becoming such a chatter box here lately, taking after her big sister!

Things have been pretty status quo here lately, as far as the girls go. Vaeh has a bit of a cough & runny nose, but that's par for the course, & will probably hang around until the weather improves a bit. We've once again brought out our trusty friend the nebulizer to keep things in check. I'm keeping a really close eye on her though, RSV seems to be rearing its ugly head again:0/

Things were quite busy here at the beginning of March as well. My Aunt's Mother-in-law had been very ill, spending a lot of time between different hospitals & eventually in a local nursing home as they were unable to accurately diagnose her. They finally decided to bring her home in early February as things weren't looking very promising. The first week of March, she passed away so we were busy helping their family out.

Now that the weather is getting nicer (at least it had been getting nicer... we're back into cooler, wetter days here for now) we've been getting out & about more. Vaeh loves being able to go outside & play with her older sister! I'm going to be spending a lot of time out doors this summer!

I've been wanting to post some photos, but for some reason I haven't been able to. Either blogger or my computer haven't let me... that, or they're conspiring against me! (LoL) I gave it another shot today, but with an older photo. Here is Miss Vaeh back in February of 2007, while she was still in the hospital recovering after her first open heart. You can see she still had her NG tube at that point. She was a few weeks shy of turning 5 months old in this photo. (Sorry about the quality, its off of our phone.) Even back then, she was a spitfire! Here she is making faces at Mawmaw during one of our many visits!

She was about 3 and a half weeks from coming home in this picture. Boy were those crazy days. I wondered more often than not back in those days what our outcome would be. Looking at her now, I know that we're blessed indeed!

Hope you are all doing well! I should get going... we're watching "Hannah Montana" again for about the 500th time! (LoL)

Good visit:0)

2010-02-23T21:19:00.002-05:00

Monday's visit with Dr. Butto went pretty good. Vaeh couldn't wait to "see Dr. Butto!" But actually I think she was much more excited to see the echo room... & her bestest friend - gel!!

When we arrived, the girls were all in disbelief of how big Vaeh has gotten! Its been 3 months since she was there last. Since November, she's gained a pound and a half, & grown 3/4 of an inch! I assured them that her attitude is growing with her body;0)! It was so cute to see her say "hi" to everyone!

We, of course, had to have our usual round of bubble-blowing while waiting our turn for the echo. She just loves bubbles, & a while back they were the only way to keep her semi-calm during her visits. So the girls all know that "Nevaeh likes her bubbles!"

I'll bet she asked about a dozen times before we finally made it, but the common question of the day was "I go play with gel now?" I was so very thankful when we did make it to the room, as the technician we had is the best at this particular office!! I had even said a quick "please, Lord" for Megan to be working today. Again I have to say, "don't tell me prayer doesn't work!!" (LoL) Once in the echo room, we met Brad. He was a young man doing a clinical rotation in his training to become an echo technician... and he was great with Vaeh!! You could tell by the way he interacted with her that he is very good with kids!!

So, during the echo as Megan is explaining different things to Brad (cause you know Vaeh is just so straight forward... HA!!) Megan became Miss V's personal gel supplier! We took the approach of "if it keeps her happy, lets go with it." Lets just say by the time they were finished with the echo, Vaeh had gel from fingertip to fingertip, chin to stomach! Of course, I was too engrossed in the actual echo to remember to take pictures of her... maybe next visit.

Speaking of the next visit, we get to wait - are you ready? ... 4 MONTHS!!! Maybe we'll be able to make it to 6 month visits yet:0) Her pressures are again unchanged, so we're status quo on everything for right now. Dr. Butto mentioned that he was considering decreasing her revatio, but since there wasn't any change (or lowering) in the pressure, that we would just kinda leave things where they are for right now. It made me feel good knowing that long term, he is looking to get her off the meds, just not ready yet. I did ask him about the possibility of a cath to stent & he said that its really not an option at this point. So for right now, the meds are the path we need to take!

So, we just have to sit back & enjoy life for the next 4 months until our next "date" with the good doctor! Her next appointment is June 28th, so summer... here we come!

Quick note...

2010-02-22T08:16:00.002-05:00

We are headed to the cardiologist's office this morning for Vaeh's appointment. Nothing out of the ordinary, just a regularly scheduled appointment. Just the same, I'm a bit nervous about it. Her last appointment, her RV pressures hadn't changed any with the same dose of medication. I'm sure you all know how a heart momma's mind wanders.... does she need a cath? Does this mean she'll need another surgery? It never ends, huh?!

I know everything is just fine, but at this point I think its more habbit to worry:0/ I'm just ready to go in & hear the good news, that she's right on track! Don't worry all, I promise an update as soon as I can this afternoon!

Prayers for Miss Emma

2010-02-14T22:21:00.003-05:00

This is one of our "heart" friends, Miss Emma. She & her Momma - Wendy, have been a big support to us along our journey through this CHD world. When I was checking my email tonight, I noticed an update on Emma's caringbridge page. It was unusual, because there were two updates... not typical for Wendy.

The above picture is one I saw when I checked in. Miss Emma has been admitted to the hospital with viral pneumonia & RSV. From what her page says, she has an elevated heart rate, she's lethargic, & has a temp of 106!! Friends, she is one sick little girl!

Please join with me in lifting this wonderful little girl up in your prayers! You can also go here to leave them a message!

I'm terrible :0(

2010-02-12T10:06:00.006-05:00

I'm such a slacker here lately! There's been so much going on & I've really put this blog on the back burner. I have tried to post a couple of times, but for some reason it wouldn't let me upload any photos. So, I got mad & gave up on the post. I've really wanted to share some great pics of the girls, but it still won't let me upload anything, except for one picture...

This is from Gabie's birthday party! Its the only pic that this silly computer has let me upload, & I'm glad I've gotten this one up. In the front, you see Gabie sitting on my sister April's lap. Then behind her (l to r) is Amber my SIL holding my nephew Austin, my brother Keith, Vaeh, Jon & I. This was the first time I had met Amber & Austin. I hadn't seen my brother Keith since I was pregnant with Gabie, & hadn't had the opportunity to meet his wife until that night. Boy was I glad for Facebook in this situation!!

I found my brother & SIL on Facebook a while back. So when I started planning Gabie's birthday party, I invited them to the party. Much to my delight, they accepted the invite & came for the festivities!! I was elated to have them here & to finally meet Amber & Austin! The whole family situation on my paternal side is, shall we say... quite mixed up! But, thankfully we were able to spend some time together & are planning another get together when the weather is nicer & hopefully can get all 4 of us (I have 2 brothers & a sister) together. I'm really excited about it!

In other news, Miss Gabie is now 6!! My baby girl is growing up way too fast! And for those of you who "know us", you may have noticed 'Gabie' is spelled differently. Well, that would be thanks to the mind of said 6 year old. She had mentioned it before, but never really pursued the matter until her birthday. She asked "Mommy, why do you spell Gabby with 2 'b's' & a 'y'? My name only has one 'b' & no 'y's'." So, based on the (very intuitive) logic of my 6 year old, we are now spelling it "Gabie." Quite smart if you ask her Momma;0)

As for Miss Vaeh, well she's just enjoying life & being a normal 3 year old!! She's actually been quite 'healthy' this winter, short of the typical sniffle/cold. I'm so thankful that we haven't had any major health issues with her this year. Its so nice to just be 'normal' - if anyone knows what that really is (LoL)! She has an upcoming cardiology appointment in a little over a week & I'm curious to see how things look. We all know the worries of a heart momma. Vaeh's been having some tired spells, & its so hard to decipher if its just normal growing spurts, being tired from a cold or something heart related. Its not significant, so I'm pretty sure its just 'normal', but all the same I'm still curious!

Now on to me. I'm sure most folks know, but I had yet another surgery a week ago. I had my gallbladder taken out. I'm finally starting to feel back on track, but am still a little sore. Thankfully, it was done laprascopically, so I was home that night. The sites from the surgery are still a bit tender, but overall I'm feeling much better.

Hope everyone is having a great week. In honor of CHD Awareness week, I saw this on a fellow heart momma's facebook status & just had to borrow it (thanks, Staci!).

A zipper scar upon my chest

for all the world to see

that congenital heart disease

has not beat me!

Hope you all have a wonderful weekend, & Happy CHD Awareness day from all of us! (oh, Happy Valentine's Day, too! ;0)

One year ago...

2010-01-15T08:30:00.009-05:00

I can hardly believe it. After Nevaeh was born, I was so unsure of many things. Will she live? Will she see her first birthday? Second, third? Will she be able to do "normal" things? Will she eat?! She's met all of those milestones & so many more in the past year. But this milestone was one of those that I never thought she'd meet. That makes it so much more sweet!

One year ago today, Vaeh was in this room...

That was one of those days you really don't want to live, but when it was over I was sooooo happy!! Here's Miss V just before she went into the cath lab... feeling a little bit loopy!

The result of all those hours of hard work in that room... no more oxygen & no more orange tinted plastic sitting under her nose (ie: cannula)!!

She looked so strange for a few days following the cath without our friend, Mr. Cannula! She had had it for so long that it was like a part of her was missing. Believe me, though, we got used to the new Vaeh REALLY easy!

Not only did she loose her oxygen tubing, but we lost another "thorn in our side" with this...

Yep. She also lost her Mic-key button in that trip to the hospital! This was one of her very first completely "tubeless" photos! That was another dream that I never thought would come true... Vaeh being tubeless. The docs, & therapist even, made us feel as though she would never eat by mouth because of all the complications she'd had as a baby. Well, true to form, Miss Vaeh showed them to expect the unexpected when it comes to her!

Its still hard to believe, sitting here typing this post, that we've made it an ENTIRE YEAR without any type of surgical intervention! Now, our next milestones are to get rid of all her meds & possibly go longer than 3 months without seeing the cardiologist. Maybe?!

Meet Maddi:0)

2010-01-13T13:24:00.004-05:00

There is a little girl I'd like to introduce to you all. She is a precious little girl, who is part of our little "club", which is how I met her & her Momma. Meet Maddi...

Isn't she a cutie pie?!! Maddi has ToFw/PA, MAPCA's, as well as duodenal atresia & reflux. She had her first open heart back in August of '09, as well as a couple of heart caths. In addition to the heart related surgeries, Maddi has had surgery to correct her duodenal atresia, as well as a G-tube placed & the Nissen. From what I've learned about Miss Maddi, she is a very complicated case of tet.

Just recently, Maddi went in for a follow up visit. According to her Momma's posts on her carepage, Miss Maddi has been given a grim prognosis. The docs are telling them that Maddi will most likely not make it past 5 years of age, unless she has a heart-lung transplant. Even with that, she doesn't have very long. :0(

I cannot even imagine what a roller coaster this family is on right now. I know they are looking into their options. More importantly, they are trusting in God. Would you all please join me in lifting this beautiful little girl & her family up in prayer?! I'm sure they'd appreciate it.

Stuffies:0(

2010-01-10T22:45:00.003-05:00

This really stinks. Up to this point, Miss V has been having a fairly good year as far as not being sick. That all changed this past Thursday night/Friday morning.

She started sounding a little stuffed up, so we broke out our friendly neighborhood nebulizer. Then I gave her a dose of benadryl (since that's the only thing she can have) when I gave her her revatio. She woke up, so we sat in the living room until about midnight. She got me up around 2 AM with a VERY stuffed up nose. Thankfully I was able to get her back to sleep & let her sleep in (Gabby had a 2 hour delay because of snow).

The waterworks started on Friday afternoon/evening. Her nose was running & her eyes are both watering. Saturday morning she woke up with both eyes matted shut & a nose that could not be "un-stuffed". Poor kiddo:0( She's so congested that she's snoring like her Daddy (LoL)!
She is even trying to blow her nose, but nothing is coming out. No fun, I tell ya! She did sound a bit better tonight when I put her down. I'm hoping she sleeps through the night... for both our sakes!

Hope everyone else is doing well & staying healthy. I love this snow, but I'm hoping they have the forcast right. A little bit warmer would be nice!

Life is good:0)

2010-01-05T11:46:00.007-05:00

Wow. Have I been a HUGE blogging slacker or what?!?! I hope you all can forgive me... life has finally been good for us here! All except for my short stint in the ER, but we'll get to that in a minute. I've just been busy enjoying having Gabby here all day since she was on Christmas break & we were just being "normal" (okay, you can stop snickering now;0)

Here's a look at what we've been up to...

Make photo slide shows at www.OneTrueMedia.com

The girls had a great time this year during the entire "Christam", as Vaeh would say, season. It's been really fun seeing the girls interact with each other, as well as Miss V really getting the whole idea this year. That & the fact that we don't have to deal with this anymore...

I really don't miss that orange-tinged plastic tube running across her face.

The girls were really cute opening their presents! Gabby wasn't shy at all... she tore right into them. Vaeh on the other hand, savored every tear of the paper! Jon had to tell her several times to keep going. Gabby had all of her presents opened & then even helped Vaeh with hers!

We had a wonderful few days together as a family since Jon was home half the day on Christmas Eve & didn't have to return to work until Sunday night. The same went for New Year's eve! Now the day after Christmas wasn't so much fun. I'm vowing right now that next year we will not go near a doctor's office or hospital from the end of October until at least February!! I woke up around 5:30AM on Saturday with pain all across my upper stomach & across my back about shoulder blade height. So, after about 3 hours, I decided I needed to go to the ER. If you guessed 'gallbladder' you are absolutely correct!! Ding, ding, ding!!! Thankfully the attack ended & they gave me some nice painkillers, but... it needs to come out:0( So, again I have to have surgery. Not sure when yet as I haven't seen the surgeon, but I'm hoping its sooner rather than later. It really isn't any fun feeling lousy every time you eat:0/

So, other than my lovely gallbladder, everyone here is doing well. We're all looking forward to a brand new year & things to keep going better & better for our family! Hope everyone else is have a great start to 2010!

** I promise to try to be a better blogger!

"Poopy Dance"

2009-12-10T17:17:00.004-05:00

Now you're all in trouble!! Now that I've figured out how to post things, I'm going to be a blogging madwoman... mwahahahaha! (just kidding;0) I've been trying to post this for what seems like weeks now! When I first started potty training, Vaeh did really well with the tinkle part of it, but the other... not so well. There were two things I had going for me: 1.) she loved to flush (LoL), & 2.) she liked to do the afore mentioned "poppy dance!" Well, it took a couple of weeks, but Vaeh is now completely potty trained (minus a few slight accidents here & there;0) So, the trick to getting her to go "poppy" was...
(make sure you pause the music so you can hear her;0)

Make an on-line slideshow at www.OneTrueMedia.com

Isn't she just the cutest?! I just love it every time she does it! I think it looks even cuter in the video, too!

YES!!!!!!!

2009-12-10T15:29:00.005-05:00

I don't know what I did differently, but whatever it was... it worked! I finally was able to upload pictures - WOOHOO!!! I got to poking around & found pictures that were directly on the computer vs. in a program & they uploaded. Almost to easily... None the less, they're up!

Here's Miss Vaeh's orthotics - she's had them for a couple of months now & I'm amazed at the difference they made! She started walking much straighter & doing so much better with jumping & going up/down steps just by putting them on. Her therapists were tickled at how much they helped, too! So finally, here's a couple of pictures of what they look like...

SMO(supramalleolar orthosis) & UCB (submalleolar)

The back view

The SMO - this is to give her more stability.

We had to get her a pair of shoes that were 2 sizes too big to accommodate the brace & give her a little room to grow. The purple thing on the front of the brace is a "toe spreader" & it helps to keep her toes down flat vs. curling like the tend to do. It all works together to make her more stable & to help her strengthen. They really seem to be doing the trick, too! She's running around like a crazy little 3 year old... just what I've always wanted!

Her therapists tell me that there's a good chance that the SMO can be cut down to a UCB in the future as she gets stronger & that there's even a chance she won't need them eventually!! How awesome would that be?!?! She goes back in February to have them checked to see if they need adjusted because she's grown. I'm sure they'll have to make some changes. About 2 weeks after she originally got them, we went back up to have them put a toe spreader on the left & the orthotist said "she's grown already"... ugh! Oh well, its a good thing we got the shoes so big!!

December 5th...

2009-12-04T13:15:00.010-05:00

Three years ago today, Jon & I had to do the hardest thing that any parent ever has to do for their child. It was around 7AM... she was the first case of the day, so we were up quite early to be at the hospital. She had already been in the hospital for the three weeks leading up to this day due to pneumonia/CHF.

I had to keep my emotions in check... otherwise I wouldn't have been able to see her through the tears. That, & I had to keep Jon from punching one of the phlebotomists - another story;0) We were able to spend about a half an hour with her before, & were even able to pray over her before we took "the walk"...

When they said "its time" my heart sank even further than it was already sitting. I didn't want to let her out of my arms. I thought "maybe if I just hold her a little longer..." thinking that I would finally wake up from the nightmare that I had been living for the previous 2 months. We walked out of the PCTU (where they had admitted her from Toledo a couple of days before) and out to the elevator. I think that was both the shortest & longest elevator ride of my life! When the doors opened up on the 2nd floor, I think MY heart skipped a beat knowing that it was time. A nurse & the anesthesiologist were both there & gave me that "look". Even though every fiber of my being wanted nothing but to run out the door & take her home, I knew I had to hand her off to them.

She was somewhat groggy as they had given her versed to calm her before. I gave her one last squeeze & handed her to the nurse. Of course, they gave me that look of understanding & reassurance that she would be well cared for. Then the next leg of the long walk to the waiting room. Thankfully we had plenty of family there with us which helped pass the time until the first update. By now it was about 7:30. The next 3 hours were the longest of my life. The physician's assistant came in to give us the first update. I was both relieved & scared to death at the same time. What were they going to say? Was she doing okay or was there a complication? "They've gotten all her lines started & are preparing to put her on bypass now. We'll be back with another update in about an hour."

Of course it was longer than an hour, but they did come back with the update that things were going well. In the end, Dr. Bove told us that he wasn't comfortable with completing her full repair as he had originally hoped, so he had unifocalized her collateral arteries & placed a modified BT shunt. Then he told us that her next surgery would be in about 6 months. Not exactly what I had wanted to hear... another surgery... but she had come through & was stable. Thank God!

Then the next traumatic event of her/our journey down this road... seeing her afterward. One of her nurses from Toledo had tried to prepare us for what she would look like after the surgery. "She's going to look like someone took a baseball bat to her." The night before, her nurse had taken us around to see some of the other little one's on the unit that had already had surgery as a way to prepare us. Thankfully she didn't look that bad. Aside from the long incision down her little chest, the ET tube & ventilator breathing for her, all of the IV pumps, lines, etc., she looked "good." Another hurdle jumped. If we'd only known how many hoops she would have to go through over the next three months...

Vaeh remained on the ventilator for a total of 14 days, with a 3 day break in the middle. She had come off of it initially, but had to be re-intubated because her lungs were still weak from the bout of pneumonia before the surgery. She spent a total of 5 weeks at the University of Michigan/ C.S.Mott Children's Hospital before she was transferred back to The Toledo Hospital for another 6 weeks before she would be able to come home. She had many life threatening complications after that first open heart & was able to come home. It was one of the hardest times in my life, & despite having to see my daughter endure so much in her young life, I wouldn't change any of it. Because without all the trials over the past 3 1/2 years, we wouldn't have this little beauty with us!

Thank you all for supporting us through this journey. Its great to have such a wonderul group of people on your side! Happy 3rd heart anniversary, Vaeh!

UGH!!!

2009-12-03T21:05:00.002-05:00

Is anyone else having trouble uploading video to blogger? I've been trying to upload the (in my opinion) cutest video of Miss V & I can't:0( I've tried blogger & one true media, neither of which will let me do anything! I can't even upload a photo... AAAAAGHH!!! HELP!!!!

On another note... where's my snow?!?!?! I'm sure many of you think I'm crazy, but I like snow during the Christmas season. Once Christmas is passed, it can go away & warm up to around the mid 50's. But for right now I WANT SNOW!!!! (LoL) If its going to cool down, the least it can do is give me a pretty winter wonderland to admire!

Hope everyone is doing well! I'm working on sending out my Christmas cards, so if your address has changed since last year, please send me an update!

New look!

2009-11-28T01:25:00.002-05:00

'Tis that time of year again! I can't hardly believe that Thanksgiving is already gone & Christmas is under a month away! Where does the time go?! It seems like just yesterday that we were bringing Gabby home from the hospital, scared out of my mind at the prospect of parenting such a tiny, helpless baby. If I had only known then what I know now, I think I would have told myself to just relax & enjoy the little moments with Gabby:0)

Even though I'm changing my layout to Christmas, I don't have any pictures of snow to share... yet;0) I'm anticipating it, though! Crazy I know, but if its going to be cold at least I have the pretty white stuff to look at!

As we were putting the Christmas tree up this evening, I had a funny thought. No tubes. It was funny looking back to last year when we decorated the house. I had to dance around 50 ft. of oxygen tubing, but not this year! No tubes of any kind are found in this house. Vaeh & Gabby were too funny with the whole experience. Gabby was so antsy to get her hands on an ornament to put on the tree. I though I was going to have to tie her up at one point (LoL)! Vaeh didn't really seem all that excited to put the ornaments on the tree, but she was all to willing to help put the boxes & such away! Now the fun will begin keeping Vaeh away from the ornaments, etc., that I have out... her & the little guy that I babysit for now (he's 2). Should keep me on my toes!

Hope everyone had a wonderful holiday this past week. I know we had a good day on Thursday. We revived an old tradition from my childhood - making paper chains. All of the kids in the family when I was younger used to work on making these paper chains with strips of construction paper that my Mom had cut for us. We used to have a ball! At my Grandparents' house, the living room was nearly 30 feet long. So we used to have a competition to see who could make the longest chain. Then we'd end up combining them all & having a chain that was well over 60 feet long! The kids on Thursday were able to compete with some of our best work from back in the day! It was fun to see the kids enjoying something that I have fond memories of from my childhood. Being the bad blogging-Momma that I am, I forgot to take the camera & get any pics of it:0/ I'll try to do better next time! Maybe a re-enactment is in order?!

A note of thanks from us... my Uncle's Mom is holding her own. They were able to do a biopsy over a week ago, & all of the test results have come back negative at this point. Which is good & bad. She is still having some difficulties & they haven't come up with a diagnosis. So, thanks for the prayers!

A belated Happy Thanksgiving to you all! Know that we have many blessings & we count each of our blogging friends as some of those many blessings!

Catching up...

2009-11-25T09:03:00.004-05:00

Okay, first off I'm sooooo mad at either 1.) my computer, or 2.) blogger. It (not sure which one) won't let me upload any photos or videos... UGH!!!!!!!!!! It all seemed to start around the time that we got our new laptop. I can't figure it out & its starting to make me very upset. I've wanted to show you all Miss Vaeh's orthotics & she does this new thing that I was wanting to show... Oh well, maybe I'll figure it out here soon!

This past Monday, we had our now quarterly (every 3 months) date with Dr. Butto. I had to laugh at Vaeh on Monday morning. She asked where we were going, & when I told her to see Dr. Butto... she jumped, laughed & said "yay!" Not sure if anyone remembers (or if I ever told...) but back in the beginning, Vaeh would SCREAM through her appointments with him! It became quite a production just getting an EKG. Especially if doc walking in the room, she would turn it into high gear! So at this appointment when Dr. Butto walked in & Miss V smiled... lets just say Dr. Butto got quite a kick out of that! I think he may have to come up with a new nickname for her. "Little troublemaker" isn't very fitting anymore!

Vaeh just keeps growing! She was 36.5 inches tall & weighs a whopping 31lbs!! Hard to believe she's gained a quarter inch & a pound in a little over a week! (gotta love the difference in scales & person measuring;0) Her sats were perfect - 100% & her blood pressure was super! I was really suprised to see how high her blood pressure was -something like 101/68. I say "hi" because since we had increased her to the correct dose of revatio, she's been running in the 80's/50's! She sat almost perfectly still for her EKG, & of course had to "help" with her echo - they always tell us that they've never seen anyone who likes to play with the gel like her!

Overall Vaeh is doing really well! The only thing that was the slightest glitch in the appointment was that her RV pressures didn't change. It doesn't mean anything bad, but it means we still have to give her the revatio. But it also means things are stable. Meaning no "interventions" any time soon. Translation = we're going to make it an entire year without any surgical procedures!!! YAY!!!!!! Its amazing to think that we've made it that long! The longest she'd ever gone prior to this was between 6 & 8 months, but a WHOLE YEAR?!?!?!?!!!!! I have to admit, though, I'm getting kinda bored - LoL!! (just kidding;0)

A quick thank you for all the prayers for my Aunt & Uncle's family. His mom continues to hold her own. She had a biopsy last week, & they haven't gotten the results yet. Again, thanks for the prayers.

Well, its time I get moving! Lots to do to get ready for Thanksgiving! Its the beginning of my favorite time of year! Can't wait for all the smells in the kitchen tomorrow. Oh, & there's some changes I need to make on here.... Happy Thanksgiving, Everyone!!

Saving Little Hearts 2010 Calendar

2009-11-18T09:31:00.007-05:00

They've finally come out with the SLH calendar for 2010. If you remember, I posted about it a while back, here. I had sent one of Miss Vaeh's photos from the Littlest Heroes Project shoot that we had for her. I finally saw a draft of the finished product. Vaeh was placed in January. If I read correctly, they had more than enough photos to complete the calendar. So many, in fact, that they made it a 15 month calendar! Here's a look at January's page...

If you look closely, you'll see Miss V in the bottom row, 4th in from the right! Isn't she just beautiful?! (yes, that was a VERY biased statement;0) You can go to the Saving Little Hearts site to order your calendar! I think there may even be a place to find where you can submit photos for next year's calendar.

I'm so sorry that I've been dormant here lately. I've been kinda upset with blogger, or my computer (not exactly sure which one). I haven't been able to upload any photos... ugh! But for some reason, something told me to try this morning & it worked! WooHoo! So, to back track a bit, someone asked about pics of Miss V's orthotics. Blogger still isn't letting me upload some photos & I'm not sure why. I'll keep trying to get it to cooperate with me!

In other news, Vaeh had a check up last week & here's her newest stats: she weighs in at a whopping 30.5lbs & is 36.25 inches tall!! I never thought that my little peanut would break the 30lb. mark, but yet again she has amazed me! She's doing really well in school & is making great progress with her orthotics. The therapist did tell me that they may be evaluating her for OT again, as she seems to be lacking in some (very) fine motor skills (ie: threading small beads onto a string). I say if it will help her, bring it on! She's still having trouble with drawing circles, copying things that someone else has drawn, but is still doing well & loving school!

One last little note for this post. If you all would remember my Aunt & Uncle, & their family in your prayers. My Aunt's Mother-in-law was taken to the hospital a couple of weeks ago & is still in the hospital. She's now at a larger facility where they're still trying to decide if she has a tumor or fungal infection in her brain. Its been very stressful on the family & they could use your prayers... & I know there's some great prayer warriors floating around blogger-land! Hope everyone else is doing well!

"Tickle my feet!"

2009-10-23T16:13:00.004-04:00

That's how Vaeh described having her feet casted & then the inserts applied. She was casted about 2 weeks ago for orthotics. I'd been wondering for a while if/when she would need these. She has always had a very flat arch which she gets from her Daddy! Mommy has the exact opposite, having VERY high arches (which can be just as bad, if not worse).

We didn't really worry about it last year & over the summer. Partly because she was just learing to walk & because the therapist that was working with her really didn't seem to care (lets not get started on THAT subject!). So when she started school/therapy this fall (with therapist that I trust completely!!!) we talked about her getting them to help with he walking/running/jumping.

This morning was her appointment to pick them up. She was so excited to go in - I think she remembered being there & having her feet casted. He put them on her to get a quick fit to know where to trim them & then put them in her shoes. She did really well with them when she first stood up & has seemed as if they aren't bothering her a bit! She has some red spots after wearing them, but overall she hasn't complained once!! I think there may be an adjustment in her future, though.

Hopefully everyone is having a good weekend (even though its nearly over:0( ) & that everyone is staying healthy! We're doing okay here, but unfortunately there were confirmed cases of H1N1 in our county this past week... so needless to say, I'm on alert! Here's to a fun, healthy week!

Potty training!!

2009-10-19T21:06:00.002-04:00

Yep. Vaeh continues to become more "normal" each day. This past week, we started potty training... finally!

This was kinda new territory for me. With Gabby, she was potty trained by a friend of mine (Thanks, Angel!) when we were in Ann Arbor for Vaeh's 2nd open heart. Gabby was trained late, too, in part because of the chaos that was our life back then. Meds every two hours from 6AM to midnight, no sleep, you get the picture. So it was Angel who had the know how & the patience to work with her.

Miss Vaeh has been telling me for a few months now "I peed, Mommy," after she wet in her diaper. I had dabbled with attempting to train her, but each time I gave her her lasix it ruined any progress that we had made. So when we finally got rid of the lasix back at the end of August, I wanted to give her some time to adjust. She had been doing pretty well the week before last in pull ups, so I decided to just go ahead & put her in panties. And it worked... fairly well. She went all week last week with only 2 accidents!! She did so well that we even had her in panties for church on Sunday!! She made it the whole day!! She's just so darn cute. We have to do the "dance" after we go, & Miss Vaeh is in charge of flusing;0) - she likes to say "bye-bye, tinkle!"

Last week went great... today, not so well:0/ She is still wearing panties, but today we've had a couple of accidents. I did put her in a pull up for school today, just so that they wouldn't have to worry about it. I think next week, though, we'll go for the gusto. Her main issue is probably the same one that plagues most kids when potty training... the dreaded "#2." That's where most of her accidents come in, so if anyone has any tips please feel free to drop them in a comment! I'm just so proud of her!

Hope everyone else is staying healthy, or getting back to being healthy!! Thanks again for checking in on us!

Still here...

2009-10-11T08:34:00.003-04:00

Yep. We didn't go anywhere... other than to the peds twice, but that was over a week ago. Boy, am I a slacker (as my husband so lovingly pointed out last night;0)! Let me just reassure you that the girls are both finally on the up & up. Here's how things went:

The last time I posted, I re-introduced everyone to our old trusty friend. "He's" still just hanging around, but not needed nearly as much now. We're going to keep "him" on standby throughout the winter, though:0) The following Monday after I posted of "his" return, I ended up taking Vaeh in to see the doc. It wasn't her regular ped, but I settled for seeing someone different that visit as the girls were both scheduled to see their regular gal that Friday. Basically on Monday they told us that Vaeh had 'viral bronchitis' & to keep using our friend. She had had a fever (which is why we went to see them) but it hadn't returned that day. Doc told me that if it did pop back up & stick around to call & he'd order a CXR.

She did really well, until Friday when they both were scheduled for well child exams. Gabby is a whopping 42 lbs & 48 inches tall! Miss Vaeh has dropped just a bit & is now just over 28 lbs, but is up to 38 inches!! She's such a tall thing anymore!! Of course Vaeh would have a low-grade fever... ugh. So, still no flu-shot for her this season. Silly girl, she hasn't ever had one! Every time we'd go to get one, she would be running a slight temp which means... no shot. Maybe she'll get one this year, although I'm not sure how things will pan out;0)

During that appointment I decided to have Gabby get the flu mist. You know, the one where they spray it up your nose vs. sticking you in the arm. Thankfully Gabby wasn't too resistant to that option & did quite well when they gave it to her. However, come Sunday Miss Gabby decided to run a fever, have a headache & be nauseous all day... ugh. Which went into the night & next morning, so Gabby missed a day of school. Come Tuesday morning she was ready to return - I think that had something to do with them roller skating in gym class;0)

So, we're finally all healthy again in the house. Which is why I'm sitting at home on the computer on Sunday morning instead of a church. There's been a virus running through quite a few families at church & I didn't want to expose the girls since they're just beginning to return to normal! That, & Daddy didn't get home until about 8:30 last night & this way we can spend some time with him - he has to leave later tonight:0/

So we're all just hanging around for today, spending some time together as a family. Hope everyone else is doing well & staying healthy!

An old friend :0/

2009-09-26T07:50:00.004-04:00

We've had an old friend stop in for a visit the past couple of days... I'm not really all that excited about it either. Let me introduce you all, again...

That's right. Our friendly (ugh) neighborhood nebulizer has returned from hibernation for the summer. This picture is from back in April because I don't have any current ones... its been that long since we've used it! I was hoping we'd get through at least October before having any sniffles here. Its been so long that I've almost forgotten what it is to hear the humming of that machine.

Miss Vaeh started in nearly a week ago with a simple runny nose. It wasn't anything big because everyone else had one, too... darn pollen:0/ So, yesterday she started in with the coughing & we broke the nebulizer out right away! Luckily we still had some pulmicort & xopenex left over from her last round that hadn't expired yet.

So this morning Miss V woke with a lovely "rattle-y" (is that even a word? It is now if you speak "Tina" - LoL) sound in her chest. After a treatment with her nebs, & a few good coughs, she sounds much better. Although there is still a lingering hoarseness to her voice. I may be calling the pediatrician later... still havent' decided yet.

In other news, we had a not -quite-so-fun weekend last weekend. We went to my cousin's house for her daughter's 1st birthday party. On the way home, Jon wanted to stop by & check something in his truck. What he found (or didn't find) was quite a shock... someone broke into his semi & stole his TV, Playstation, CB radio, flashlight & a bunch of CD's & DVD's, amongst other things. He also has a fairly good sized refrigerator in there & they tried to take it but didn't succeed thankfully! So, Jon called the local police department & they came out, wrote a report & dusted for fingerprints. Which meant in addition to all the lovely shards of glass that were in the truck, now there was a lovely layer of black fingerprint dust. He was very impressed with how quickly the police responded & that they actually took prints, but hopes aren't too high on recovering anything. Oh, the other thing is that the company's insurance won't cover any of his stuff. "It's all stuff that can be taken home every weekend when not in the truck." Can you believe that?!?! Oh well, we'll just have to make due I guess!

We're hoping this weekend doesn't bring any unwanted surprises like last weekend did! Hope everyone else is staying healthy & has a wonderful weekend!

Miss Moriah :0)

2009-09-24T10:32:00.005-04:00

Meet Moriah & her parents, Justin & Victoria. Miss Moriah is a fellow heart friend (ToFw/PA,MAPCA's) as well as having been diagnosed with CHARGE syndrome & multiple other problems. She has endured 2 open hearts, 5 caths, & a tracheotomy, among many other surgeries. This precious little girl & her family have spent nearly 11 months in the hospital.

Currently Moriah is waiting to be transferred back to Stanford from CHLA, as she is having continued issues with bleeding and infections. She has endured so much over those long months spent in the hospital, as have her parents. Please join me in praying for this beautiful little girl & her family!

Happy Birthday, Miss Vaeh!!

2009-09-17T17:13:00.007-04:00

Its hard to believe that it was exactly 3 years ago that we were in the hospital waiting to welcome the newest member of our family...

(isn't she beautiful?!)

It was unimaginable that we would end up in the NICU/PICU for the first three weeks, & many more to follow, going through helicopter rides, surgeries, crises, & nearly loosing her twice. But we did. Its been a long 3 years, but I wouldn't change them for anything. Because if I did, I wouldn't have this beautiful little girl that you see now...

I cannot begin to imagine my life without this precious little girl in it (or her big sister;0). And because of her, we now have added such a wonderful extended "family" through this journey we've been on. There are so many of you who have helped us get through these past 3 years & I hate to think of where we'd be without each & every one of you. So from the bottom of our hearts, thank you for joining us. We love you all!! Happy Birthday, Baby Girl!!

Firsts...

2009-09-17T13:47:00.009-04:00

So I've been waiting to put up another post, so I'd have lots to share with you all. So here goes... let's start with the firsts, shall we?

Last week, Miss Gabby started kindergarten!!! The schools here started late due to building/road construction. Needless to say, all the kids were ready to start this year. The first day went really well! Of course she said she loved it! The biggest things she told me about were having recess twice & lunch (LoL)!

Here's my big girl... Gabby, the kindergartner!

I think we both did quite well on her first day. I only shed a few tears & not until after I had dropped her off. I think it was much harder on me than her;0) She was sooo ready & had a wonderful day. She continues to tell me that she "loved it" when I ask how her day goes. I wish someone would tell me where the last 5 years went?! (LoL)

Another first happened today. Miss Vaeh went to "class" as she likes to call it. We got her back pack ready & headed over mid morning today. She was all too willing to go to class & leave me in her dust! "Bye, Mom! See you later... this MY teacher!" This is what she told me as she walked into the classroom today. When I picked her up, she tried her darnedest to stay... "me wanna stay here!" Well, of course we couldn't, but it really made me feel good to know that she enjoyed herself. The therapist that worked with her today is one of the gals that started originally when Vaeh first started therapy here at the house. Barb said Miss Vaeh is definitely behind with her extensor strength, as well as her abdominals & overall. I am confident that she'll make up the lost ground in no time!!

Here's little Miss on her first day of school!

I'm hoping that both girls keep up with their love of school. It will make life so much easier in the long run!! Now I'll just have to figure out what to do with my "spare" time - LoL!!

New editions...

2009-09-06T21:38:00.003-04:00

Yep. We added to our family, in a rather large number... 22 to be exact. We've actually had these newest members among us for nearly 2 months, but I've been quite the procrastinator ;0) Here's a photo of part of the bunch:

Jon & I both have wanted an aquarium for the house. I've always loved watching fish swim... they look so peaceful & graceful. Jon's Dad had aquariums when Jon was little & he's always said he wanted to have one.

We started off back in January with a 5 gallon tank that we bought for Gabby for her birthday. I think I posted about how we went through quite a few gold fish in a short time. We decided after losing nearly 15 fish inside of 2 months, that we would try tropical fish instead of goldfish. Our 'dream' however was to have a larger tank. I was at my Mom's shop one day & Holly (one of their floral designers) said that her Mom had a big tank that had been sitting empty because she got tired of taking care of it. I asked her to get the particulars on how big, how much, etc. So a few phone calls later, & we have what you see in the picture.

We ended up getting the whole set up for a huge bargain, so much so that we just couldn't pass it up! So we now have a 75 gallon tank, a 5 gallon tank, & a beta bowl! In all we have 22 fish, including 2 sharks! Vaeh picked out one of the sharks & named him "Sharky" (such an imagination she has when it comes to naming things ~ LoL)! We are really enjoying having them to look at, plus its helping me teach the girls a little responsibility with feeding & caring for them.

In other news, Miss Vaeh will actually be going to preschool!... sort of. I'm not sure if I blogged about this, but about a year and a half ago, the county changed providers for therapy through the Help Me Grow program (here in Ohio). The gals that worked with Vaeh in the beginning had a tough road getting through with Vaeh, but once they broke that barrier, she really began to work with them & progress. Right about the same time, the county switched providers. As a (now former)therapist assistant I knew more than the average mom did when it came to Vaeh's treatment, although I never dealt with pediatrics. There's a world of difference, but there's enough similarity that I knew the new therapists weren't doing anything to benefit her.

With Vaeh "aging out" of that program, she was up for evaluation by the next level therapists... who just happened to be the original girls. In the spring Vaeh had a "play-based assessment" by some of the staff that would possibly be working with her. At that time they said that Vaeh didn't qualify for services. A few weeks later, I got a phone call about Norma (Vaeh's original PT) wanting to take one last look at her before she signed off on her not needing services. Well, Norma was here on Friday & she said that, even though it was by a very slim margin... Vaeh does qualify!! She still considers her about 8 months behind on gross motor skills, which boils down to she doesn't jump/hop or do stairs independently.

I was ecstatic!! Vaeh will get to work with the girls that got her so far in the beginning! Even though they still consider her "behind" they're going to be able to help her get what she needs! For right now, she'll be getting what they call "itinerant" services. Basically I have to take her to the building & then pick her up when she's done. I think they'll even get her into a classroom situation, which is wonderful!! I'm so excited.

So, both of my girls are going to start school this year:0/ I'm very excited, but at the same time sad... what will I do?! (Let's just say there's a few ideas floating around...)

Hope you all are having a nice extended weekend!

Mistakes...

2009-08-28T00:13:00.003-04:00

Well we found out for sure. Vaeh has been getting the wrong dose of her medication this whole time. Actually half of what the doc ordered. Believe me, I was NOT happy at all ( & yes, heads did roll!)!! I won't go into the gory details, but lets just say I ended up in a shouting match on the phone with the pharmacist. Then Jon physically went to the pharmacy & spoke to this man & got two different stories inside of 5 minutes... UGH!!!!!

This fella that I ended up "shouting" with was a covering pharmacist... not even the person who normally works. The regular pharm. was there today & got everything straightened out. But they still could not answer how the mistake happened in the first place. So trying to cover, he gave us a gift card for this store. Not sure how I feel about that....

Since she has been getting the wrong dose, & since Revatio is a vaso-dilator, we have to increase her dose slowly. We start tomorrow with 3mL's every 8 hours. Then 2 hours after her dose I have to check her blood pressure. We do this for a week, call the card. office with her pressures, & if everything is okay, we can increase to 4 mL's. I did call the card's office to get parameters for her pressures 95/60 to 99/65. If her systolic goes under 80, we have to call the card.

I'm kinda dreading this, because I remember when Vaeh first started taking revatio she was sooooo sleepy. It took her about 2 weeks to adjust to being on it. Jon & I are kinda hoping that her having been on it for so long, & we're gradually increasing the dose that she won't have a reaction this time:0/ Its a really good thing that I noticed the difference in the dosage. Who knows how long it would have went on if I hadn't spoke up. That, & it just makes me wonder what her RV pressures would have been if she'd been getting the correct dose?! It just goes to show that the only one looking out for our kiddos is us!

As for how we're doing, us girls are enjoying having Daddy home! We went & got a new laptop, as our previous one is on its last leg. We also added to the family again... I'll save that one for another post;0) Plus I've been going shorter, & may go even shorter, with my hair & dyed it darker! I promise if I do go shorter, I'll post staged pictures:0)

Hope everyone else is doing well! A quick update on Mr. Logan... he's home! Thanks for checking in!! Have a great weekend!

One less...

2009-08-24T21:14:00.003-04:00

Yep. We are now showing "one less" medication on Vaeh's list. We were able to drop her lasix as of her appointment with Dr. Butto today!!

It was a fairly good visit with our 'friendly neighborhood cardiologist'. Miss Vaeh was an inch taller than 3 months ago at 35 3/8 in., & nearly a pound and a half heavier, weighing in at 29.5 lbs! Her EKG went as smooth as one could go, looking normal (for her;0) & her echo went well, too. Despite the technician seeming to not know what she was doing. It happens every time we go & this particular gal is working. She seems very uneasy completing the echo. I'm not sure if its just with Vaeh, or its like this with all her patients. She inevitably calls for Dr. Butto to come in & he has to show her where things are, tell her what exactly to look for. Today, Dr. Butto came in & had to ask her to redo everything that he wanted to see (tricuspid regurg, her PA's, & the RV pressure)... ugh!

So, her RV pressure has come down some. He said it was 45-50 last time, & today it was 39-41 depending. So we're still on the revatio. The dose, however, is under question somewhat. I asked him to write another refill, because we had run out. He asked me the concentration, which I didn't know - the pharmacy didn't put that on the bottle. After checking her chart, the nurse brought in the script & it had a different dosage than what Vaeh's been on for the last 3 months. So, after we talked about it, the nurse called the pharmacy where we had it filled. They didn't know what her concentration was & why we were instructed to give her half the amount that Dr. Butto wrote. "The person that compounded it will not be here until tomorrow," was the response we got.

WHAT?!?!?!? You mean there's a chance that we've been giving Vaeh the wrong dosage for the last 3 months?!?!?!? So, after letting my blood pressure come down out of the rafters, I'm going to the pharmacy tomorrow to get the refill & get some answers!! Lets just say that if we've been giving her the wrong dosage, heads will roll!!

Other than that, everything went fine & we don't have to go back for another 3 months!! I'm hoping that her pressures continue to come down & we can get her off the meds. Although I'm extremely happy about only having one medication in the cupboard!! That's a first in her life!

So, we're enjoying having Daddy home for the week... hope everyone else is doing well!

Prayers for Mr. Logan:0)

2009-08-21T16:05:00.003-04:00

Our little heart friend, Logan just had surgery yesterday & is doing fairly well. According to his blog, he's off the ventilator & into the recovery phase. He could use any extra prayers you could pass along their way.

As for us, just the normal things going on around here. Jon is on vacation next week, so we get to have him around for a whole week! The girls & I can't wait!! Miss Gabby had her kindergarten testing & has orientation the first week in September. So in a couple of weeks, it will just be me & Vaeh here during the day! I'm excited & at the same time dreading it:0/
Miss Vaeh also has her follow up date with Dr. Butto. I'll be sure to let everyone know how things go:0) Hope everyone has a great weekend!!

Littlest Hero's Project... part 2

2009-08-10T18:26:00.003-04:00

Okay, I couldn't figure out how to copy any of the other photos that our photographer Amanda sent to me today:0( So instead, I'm posting the link for all of the photos that she's sending me on a disc so that I can print as many as I want! How great is that?!?! Here's the link...

http://flickr.com/gp/momarazzi/j85i13

Okay, & just so y'all know... you're getting to see these photos before Daddy does!! Since he's out on the road & without access to a computer, he has to wait until he gets home:0( He knows that I've gotten the link & that the CD is on the way, so he's quite anxious!

Hope you all enjoy them as much as I did! Let me know which is your favorite & I'll share mine later!

Littlest Heroes Project!

2009-08-04T08:32:00.005-04:00

I've been waiting, trying to be patient;0) for the pictures to come in from our photo shoot for the Littlest Heroes Project. I couldn't take it anymore, so I emailed Amanda, our photographer, to see if she had a couple of shots that I could use to put on the blog, etc. She told us after the shoot that it would be about 2 weeks & she would get us the photos. Well, I emailed her yesterday, & here's part of the response...

Aren't they beautiful?!?! I fall in love again with my girls each time I look at these photos! How could you not?! ;0) Despite it being a quite overcast & some what rainy day, they really turned out well. These were outside of the conservatory that we went to for the shoot. I'm really excited now to see the rest of them. She took quite a few photos of the girls inside an exhibit that had bunches of butterflies! The girls were both enthralled with them. I promise I'll share them when I get them!

Part of the reason I wanted a photo was to submit one for the Saving Little Hearts 2010 calendar. They take photos of kids who have heart defects & make a calendar to sell to help the organization. You can click here if you have a CHD survivor who's photo you'd like to submit!

This & That!

2009-07-27T15:45:00.005-04:00

I was reading on Kaitlyn's blog today about the FDA approving a new transcatheter valve replacement. Basically meaning that transcatheter valve replacements for RVOTO (right ventricular outflow tract obstruction - usually associated with ToF) patients would be approved for the US. I'm so giddy, because this means that Vaeh wouldn't have to anymore open heart surgeries! Can you say... WOO HOO?!?!?!?! Click here to read the article about the device. They even show a picture of the valve & the catheter that they use to place it.

Things around here are going okay. We've had some frustration with Jon's upcoming physical for his employer. Since he has a commercial driver's license (CDL) he has to have a physical every year. Its been quite a headache in the past as he has sleep apnea. They really crack down on drivers who have this. So, Jon has to sleep with a CPAP & has to have the machine "down-loaded" every year so that they will pass him to drive. Well, he went up on Friday last week & found out that they aren't going to accept things this year without a "maintenance of wakefulness" test. Basically he has to go up to the sleep clinic, they wire him up to monitor him while he sits in a dimly lit room for 40 minutes. During that time, he's not allowed to sing, talk, etc., to try to stay awake. Basically he has to stay completely still & not fall asleep! If he falls "asleep" for more that 10 seconds... he would fail. Lets just say this has been a big thorn in our side. The one good thing is that Daddy has been home since last Wednesday night!!

The girls are doing really well:0) Gabby is getting really excited about starting kindergarten. She's got until September to wait, though, so I think its going to be a long month of August! Miss Vaeh is doing great!! She's really enjoying being able to get outside & play this summer. This is really the first year that she hasn't had to stay inside, so she's getting her fill of the great outdoors!

This past weekend we were finally able to go for our photo shoot with the Littlest Heroes Project. It was a wonderful day! The photographer that we were connected with (Amanda McKinley from Mom-A-Razzi photography) was great to work with. She did an great job of getting the girls into different areas to get shots of them! She even included Gabby, taking bunches of shots of the girls together & one or two of just Gabby! We had the session at the Franklin Park Conservatory in Columbus & it was beautiful!! The girls really loved the "butterfly room". We did pictures both inside the conservatory & outside, once the clouds/rain passed. Then it was onto the Spaghetti Warehouse for dinner before coming home - yummy!! As for the photos... Amanda said that she would have a CD of them to me in about 2 weeks. So once I get them, you can bet that I'll be sharing them!!

On a fun side note, one of my blogging friends Amber (Gracie B's Momma) & her family had a very exciting weekend, too! They were able to bring the newest member of their family home from the NICU!! They are in the process of adopting little Mr. Jacob & he's just as cute as could be! Pop on over the their blog to see pictures of their family!

Thanks for stopping in to check up on us (when I finally get around to posting;0) )! We really love you all!

PS - Please keep McMama, Stellan & their family in your prayers. Stellan is not doing well & is on his way to Boston again:0(

Busy!

2009-07-19T17:29:00.004-04:00

Yet another busy week and a half here! Its just normal life here lately, since we don't go back to see the cardiologist until mid August. I'm really anxious to see the cardiologist to see what her pressures have done.

This weekend we had a wedding to go to. A couple of family friends tied the knot! It was an absolute blast to see both my girls running around having such fun! They danced the night away...

Make photo slide shows at www.OneTrueMedia.com

Even Daddy got into the mood, dancing with his girls!

Little Miss Vaeh is growing into such a little lady! She's even trying to wear my shoes ;0)

But you put her into the tub, & she's back to the antics of a normal 2 and a half year old! Watch out... she'll get ya! She's been trying to squirt everyone who comes in the bathroom when she's in the tub!

Its been so fun to do such normal things with her this summer, & not to have to plan our time around doctor's visits. Tonight we may head out to the Armstrong Museum to watch the laser light show. This year is the 40th anniversary of the moon landing & man's first walk on the moon. Neil Armstrong was the first to step on the moon's surface & he happened to be born & raised here in our little town - Wapakoneta. This just also happens to be my aunt's birthday - she was born around the same time they landed on the surface! Of course there's always a festival around July 20th to celebrate our native son's fame & putting Wapak on the map!

Hope everyone is still enjoying their summer! It really seems to speed up after the 4th of July, huh?! I do have to say that I am enjoying these mild temperatures! Its been in the high 70's/low 80's for the past several days & has been cooling off quite nicely in the evenings - great sleeping weather! Hopefully it will stay like this... maybe for good?! (just kidding;0) )

I'm hoping that next weekend I'll have some great photos to share. We are scheduled for Vaeh's photo shoot for the Littlest Heroes Project. I'm really excited to see how they turn out. We're going to the Franklin conservatory, which is basically like an inside garden. This should work out nice so that we don't have to worry about the weather! I PROMISE I'll post some of the photos as soon as I can! Have a great week!!

Here we go again...

2009-07-06T09:18:00.004-04:00

Yep, that's right. Another catch up post. I am really a slacker here lately! I guess that's what happens when you get older! Today is my, ahem... 34th birthday. Sigh. (LoL) Its also my sister-in-law's, & my two cousins' birthday, too! So, if you all are reading this post... HAPPY BIRTHDAY!!!

So, back to the catching up. We've been having fun around here! We're trying to get things ready for our fish tank, so that we can get it set up vs. sitting in the garage. I still need to get some stone for it (about 90lbs. more) & get the filter situation figured out. So, maybe by... Christmas we'll have fish in it (LoL)! Believe it or not, the MUCH smaller tank we have, we actually have 3 of the little glow fish that have lasted nearly 2 months, which is a record around here ;0)

The girls are very normal! Fighting like most sisters do... so nice (in its own way) to have such normalcy around here!

Of course, we had quite the weekend with celebrating the holiday, & the multi-faceted birthday party! On Friday, we went down to our church for the annual 4th of July celebration. They've been having a little festival of sorts for the last 10 years or so. It started as just a church function, but has blossomed into a full blown carnival. They have free hot dogs, hamburgers & chips. They also have funnel cakes, cotton candy... all the typical carnival stuff. Usually there's a show in the sanctuary for the kids, then its on to the fireworks! They are some of the best in our area. Here's some pictures ...

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Poor Vaeh... screamed after the first one went off & Jon had to take her inside. It was kind of cloudy, so the noise level was a little higher. All in all, they girls had a wonderful time! Then on the 4th, it was a surprise birthday for one of my birthday-sharing cousins. We had a nice time just chatting with family.

Today I plan on catching up on things around the house. What a way to spend my birthday, huh?! Hope everyone else is enjoying their summer!

Catching up...

2009-06-25T09:46:00.008-04:00

I have really been a slacker lately! I hope you all will forgive me... please?! We've just been hanging out & enjoying the summer. Nothing much really going on around here. Thankfully every one's been fairly healthy. Although Daddy had a nasty ear infection that landed him in the ER a couple of weeks ago, & now I'm brewing one (they're so NOT fun) & I had a lovely gallbladder attack the other night. Oh well, at least the kids are healthy! Only typical bumps & bruises that accompany summer!

Here's a few photos to catch up on the past few days. Last weekend I traded off days of helping my Mom & aunt's out with decorating. I went & helped set up on Friday for a reception while my cousin Erica came up & stayed with the girls. She has a little boy & girl, so the kids had a great time playing with their older cousins (Leslie & Jake). Then on Saturday it was a repeat of Friday, except that I stayed with the kids while Erica went to help decorate. They all had a really great time playing together. It was quite "busy" in our house those two days (ie: noisy, cluttered!)!

Oh, while all the little one's were here, we found out that our kids are miraculous! They were walking on water!!! Let me clarify...

They were having a blast running "on" the water ;0) We recently got a big fish tank (more on that to come in a future post!) & Jon filled it up to make sure it didn't leak before we put it in the house. So they were running through the drain off water from the tank.

Here's a couple more shots from the weekend...

Gabby couldn't wait to feed Emma!

Little miss skinny legs showing her stuff!

Sharing a root beer float with Daddy!

Happy Father's day, Daddy!

We were supposed to have the photo shoot with the Littlest Heroes Project this weekend, but with the weather supposed to be HOT we decided to reschedule, considering its an outside shoot & Vaeh (& the rest of us) don't handle the heat too well. I'm waiting to hear back about that.

On Sunday, however, we're going to celebrate my Grandpa's 80th birthday!! We're having a picnic type get together with our family to celebrate! I can't wait! I promise I'll put up pictures from this weekend, & when we get our fish tank up & running I'll put pics up of that, too!

Hope everyone else is doing well. Our little friend Elijah is home & recovering quite quickly from spine surgery! Also, our friend Krista is scheduled to have her little man July 1st! How exciting! Also, please continue to keep a beautiful little guy that Amber & her family have taken in. He remains in the NICU.

2009-06-16T08:51:00.002-04:00

Whew! I need to get back in the game:0) I've been off my blogging game since the weather has gotten nice! I've really got my work cut out for me. Miss Vaeh loves to go "owside". It really makes it difficult with her being on lasix, I have to watch her sun exposure.

This past weekend, however, Mommy was busy helping out with wedding decorating & flowers. I was asked to help my Mom & her sisters out with their weekend... 3 weddings! So, Daddy was in charge of entertaining the twosome on Saturday. So, knowing their love of the "owside", parks, & slides... they headed to one of the local elementary school's playground. They LOVED it!! Miss Vaeh is really beginning to keep pace with her older sister! Here's an overview of their day...

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They were both tuckered out by that evening! Even with being soooo tired, Vaeh was still asking to go "owside" as she was drifting off to sleep:0) Then yesterday, our cousins came in for a fun summer day. Leslie (12), Jake (11) & Josh (8) usually spend the days at their house, but occasionally come in to hang out with the girls & I.

The boys really are in love with mowing lawns, so it worked out yesterday that my yard work got done & the boys were ecstatic to mow ;0) Leslie helped out, too! Then of course, you have to reward hard work with ice cream, so off we headed to the local dairy bar (yum-yum). Then I had the bright idea of going swimming. My in-laws have an above ground pool in their back yard, so we had supper & headed over to get into the water. The kids had a great time! Vaeh lasted about 15 minutes before turning all sorts of shades of blue, purple, & everything in between! The only bad part was that I forgot the camera through the whole day :0( You would think that I would have learned by now, but noooo! Maybe someday my brain will catch up with the rest of me ;o)

Hope you're all enjoying your summer! If you wouldn't mind keeping a couple of our friends in your prayers... Mr. Elijah is scheduled for surgery this Thursday. He'll have to be in the hospital for a couple of days, I think, so keep him & his parents in your prayers! Also, Krista is expecting her second son soon! Amber & her family have taken on another little foster child. He's a precious little guy who's battling for his life in the NICU. Please keep these & all of our friends in your prayers!

I'm terrible!!

2009-06-08T08:37:00.004-04:00

Oh-my-goodness! I REALLY have been a slacker with this blog:0( I promise that nothing bad is going on...you all know that one of the first things I do is let our "blog family" know about anything - good or bad. We've just been enjoying life! Both the girls are having so much fun "owside," as Miss Vaeh would say!

This past weekend, we took the girls up to the elementary school's play ground... & they had a blast! Gabby was all over the jungle gym stuff, & Miss Vaeh loved going up the steps & down the slides! The only bad part was that - bad Mommy - forgot the camera:0( I'm sure, however, that we'll make at least one trip back there this summer!

Hope everyone else is well & enjoying the summer!

Promised Pictures:0)

2009-05-26T16:05:00.008-04:00

Okay, to start off here's a video of our newly deemed "mountain climber". On the swing set we have there's a "rock climbing wall" that Vaeh has been eyeing for quite a while. We started out when the weather got nice letting her try to climb it & she did fairly well. Look at how she's doing now... (Make sure you scroll down to the bottom of the page & pause the music before you watch her in action!)

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So much for needing therapy or being behind developmentally! Boy, am I going to have a fun summer trying to keep up with her & her sister!

So, did you get a good look at her in the video? Did you see her hair? Take a peek again in this shot...

Isn't she just as cute as can be?!! (okay, so maybe I'm biased!) Here's Gabby's new do...

Doesn't she look so grown up?!?! I don't know if I can handle this - ugh! Oh, & I'll even show my new look. They took about 6 inches off the back & I love it!

(I put that picture up just for you, Amber :0) I cropped this out of a picture that my Mom took of our little family right after Miss Gabby's graduation last week from pre-k...

So there's some up to date pics of us! I'm sorry that I've been a slacker here lately. I have no excuses. But I'll warn you I'm not sure how frequent posts will be coming in the next couple of weeks. After we get past tomorrow (I have to help blow up balloons for my Mom & Aunt's - 500 orange balloons that will be released at a funeral tomorrow...) I'm going to buckle down & try to get Miss Vaeh potty trained! She doesn't like to wear diapers anymore - just pull ups. The problem is she won't yet tell me when she needs to go. She isn't really grasping the concept yet, so we're going to try regular big girl panties!! I'll let you know how things are going... :0)

Hopefully everyone is doing well. Oh, & if you would remember to keep Mr. Elijah in your prayers... he is scheduled to have surgery to release a tethered cord June 18th. He's one of our little heart buddies that is just too cute for words! I'm sure he & his family would appreciate your prayers! Thanks again for checking in on us!

Oh, goodness

2009-05-25T22:49:00.003-04:00

I did it again. I went 10 days without a new post. Boy am I a slacker! But in my defense, we have been busy.

We were able to finally get our flower beds mulched, which really gave the house a finished touch. (It only took 3+ years - LoL!) And yesterday, Jon & his Dad hung my flag that I've had for nearly a year... just in time for Memorial Day. I'm a very patriotic person, so it was nice to have that flag flying.

We also all got hair cuts! The girls (myself included) are all short-haired now. Gabby & Vaeh both look soooo much older, it almost hurts! But they also look VERY cute! Gabby wanted hers up to about chin level, so that's where it is. Vaeh's is a little shorter than that, but I'm hoping cutting hers now will help it thicken up. With all the surgeries she had, all that anesthesia, along with her pulling her own hair all the time... lets just say her hair is quite thin. As for me, I just needed a change. I used to color my hair every 6 weeks. Now I'm lucky if I get it cut once a year!

Vaeh had her preschool assessment. She's too good - meaning she doesn't qualify with her therapies to have county based services paid for. So I'm going to try to get her into regular preschool this fall, & if I can't then I'll just wait until next year! To show off her skills, I have a great video of her, but can't post it right now. I promise I'll post it soon!

Oh, & Vaeh had her first sleep over somewhere other than the hospital! She & Gabby spent the night with Mawmaw. So Daddy & Mommy actually had a date night! The entire night without kids! We figured we hadn't been kid less (other than when Vaeh was in the hospital) in 5 YEARS!!! So, we went to see a movie - Night at the Museum: Battle of the Smithsonian. It was a really good movie!

So, just a quick update here. I promise to post pictures sometime tomorrow. On a quick note, though... would you all keep Jesse's family in your prayers. He is a 15 year old that lost his battle with leukemia last week. I'm sure his family would appreciate your prayers.

Promise, more coming soon... :0)

One year ago today...

2009-05-15T00:01:00.000-04:00

We were in an all too familiar place, for yet again sending our 'Reflection of Heaven' into surgery for a third time on her little heart. This time to hopefully complete her repair. Thankfully she did better than any of them expected her to!

We headed to the hospital around 7 am... scheduled for surgery at 8. They gave her a dose of versed & we were able to get some pictures of our "drunken" little girl before we would see her with all those tubes & wires, on a ventilator & sedated. I hated seeing her like that. Thankfully we don't have to worry about that again any time in the near future.

So, we're celebrating Vaeh's heart day today! Its amazing where we've come from...

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to where we are now...

( How can you resist that gorgeous face?! )

Thank you all for joining us & supporting us along this journey. We couldn't make it without all of your love, support & prayers! We love you all!!

So much info... so little space!

2009-05-11T22:10:00.007-04:00

I fear that this post may take up quite a bit of space, since I've been lacking on my blogging duties:0) To start off, Happy belated Mother's day to all you wonderful Momma's out there! I hope you all were blessed with a wonderful day with your families! The girls both made me wonderful gifts - Gabby gave me a little poem & a hand print from school, & Vaeh colored me a picture in Sunday school! I will treasure them always. And yes, they were both worth more that the other gift I was given...

Okay, so its really for the whole family, but as Jon says "its Momma's ride." We previously owned a 1997 Chevy Blazer that was on its last leg. We found this one (a 2005) on my brother-in-law's used car lot & couldn't pass up the deal. Its so nice to have the extra room the 3rd seat provides, too!

Now, as for my little stinker! My oh my how much personality Miss Vaeh is beginning to show! I think that she went through the "terrific 2's" & is now moving into the "terrible 3's" just like her older sister did:0) She's really beginning to push buttons to see how far she can take Mommy! I love every minute of it!! Today while we were waiting to have her echo done, she was kicking around, hitting me, etc. Then during the echo, she decided she wanted to pull on the EKG leads that they had on her. She created quite a bit of artifact in the strip, but the pictures they got at least turned out well enough. Just take a look at this face...

Playing before Megan started her echo.

Getting started.

Here, let me help you! She loves the gel!

Showing several "shots" of her heart.

Her appointment went very well today. It started off with perfect sats - 100%!! I just love seeing those triple digits:0) Her blood pressure has leveled out too, back up in a more normal range vs. being on the low side. Then onto the scale. I think (?hope) I told you all how Miss Vaeh had lost some weight right after we had her button taken out. Well, for a short time we kinda got a little worried but once she adjusted to being on the revatio, her appetite picked up & she seemed to be getting back to normal. Well, the scale proved that today. Since we were there to see Dr. Butto in March, little miss thing has gained almost 3 pounds!!! She weighed in at 27lb 14oz today!!! That really did my heart good!

Dr. Butto also said that the revatio is doing its job. Her right ventricle pressure is down from 55 to high 30's/low 40's! He did say that we still can't change her dose any, as the half-life for this drug is short & her pressures are still elevated. But we're moving in the right direction. He also gave the okay for her to go to a center based preschool vs. home!! So, come this fall I'll have 2.5 hours to myself 4 days a week! I'm not sure what I'll do, but I'll start planning now! (LoL)

Other than that, she's doing great & we don't have to go back for - are you ready? 3 months!!! We've never gone that long without seeing Dr. Butto! I think I'm going to go through withdrawal LoL!!

The girls are both enjoying the nicer weather. Vaeh is constantly asking "ow-side." I'm going to have my hands full this summer! They're both getting so big. Vaeh can now tell me both of her meds & which one each is by looking at the color. Check out this video of her taking her meds...

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How many 2 year olds do you know that can say the name of their medicines?! Just early training for her to go into the medical field (LoL)!

Gabby is doing well. She's getting excited about starting kindergarten. We even went & got her immunizations up to date, which meant that it was her turn for a poke (actually 3) :0( She did so well, though. That's one step closer to my baby going to school - ugh! These kiddos need to slow down. Vaeh's doing it to me, too! Look at her latest feat in the world of getting older...

Yep. She's in a toddler bed instead of her crib. Her first night in it was last night & she did fairly well. I did hear her around 2:30 this morning, & went in to find she had rolled out of bed & underneath the bed! She didn't even wake up when I pulled her out & put her back to bed! Glad she's a sound sleeper!

Well, there you have it. Sorry its been so long. I promise I'll try not to let it happen again! Hopefully everyone is doing well. Thanks for checking in on us!

PS - If you all could, would you please keep a couple of our friends in your prayers? Most of you probably know Miss Gracie, but if you're new here please link over & read her story. Her family is such a strong ,wonderful bunch & they're going through some trying times & could use your prayers.

Also, another friend of our family are in the midst of a battle for life. Jesse is a young man who is once again battling leukemia & things are dire at this point. He is in critical condition after a failed bone marrow transplant & they're hoping that he can gain enough strength to fight for a second chance at transplant. I know the family would appreciate your prayers, too!

Update coming!!

2009-05-11T11:31:00.002-04:00

Sorry its been soooo long since I've updated. There really hasn't been much going on around here other than "normal" life (if you can define normal - LoL!). Vaeh & I are headed to our "date" with Dr. Butto, her cardiologist. So, as soon as we get home & I get a chance, I'll put up a long overdue update as to life in the Walp household!

Hope everyone else is well & had a great Mother's day!

I did it!!

2009-04-21T17:40:00.004-04:00

Yep. I did it. I've been putting this off for quite some time now, though I'm not sure why I've been putting it off. Procrastination, I guess:0) (I'm really good at that!)

Oh, I guess I should tell you all what I'm talking about... The Littlest Hero's Project. I've known about this wonderful charity for a while now. When I first found them Vaeh hadn't had her final repair & was on O2. In my mind at that point I didn't want the pictures to have all the tubes, etc. Now I wish we'd done it then. Here's a case of hindsight being 20/20!

So I really decided to do all this around 10:30 last night, & by this morning I had an acceptance email!! So today I've been scouting out photographers on their list & emailing them back! Now its just a matter of hearing back from the actual photographer that we'll be working with! Its really exciting anticipating having another picture on the wall other than the one from the hospital - LoL!!!

Not much else going on around here. Miss Vaeh did fall & hit her eye on something & now looks like she has a streak of eye shadow on!

Oh, the joys of growing up "normal"!

Hope everyone else is doing well! I think we all need to band together & do a sunshine & warmth dance. That is if you live in the mid west!

Here we go again...

2009-04-16T10:08:00.002-04:00

So, this was the scene in our house... again, this morning. Miss Vaeh has had a runny nose the past couple of days, but yesterday it kicked into high gear. Every time she turned around I had to wipe her nose. At times it even was a little bloody (I think from the dry air). Her eyes have been extremely watery & "goopy" with a lot of matter. She's even woke up with her eyes matted shut a couple of days ago:0( So after trying benadryl last night, to no avail, I broke the nebulizer out again this morning. She's just so stuffy sounding - like she's talking through her nose! So, for anyone who doesn't "speak Vaeh" its even more difficult to understand her - LoL!!

As for other news, Vaeh's really getting good at going up & down steps - with help, that is! That, running & jumping are basically the only reasons she's not "caught up" developmentally, according to the therapist. She is sooo close to running... we make her try it all the time. This for two reasons, really: 1.) she gets better with practice, & 2.) she's just so darn cute when she does it! I was actually able to catch her on video...

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Don't mind the crazy woman operating the camera & asking her to run over & over! I just can't help myself, she looks so determined with that arm pumping along! It reminds me of her first steps & having to have the purse on her shoulder before she would walk!

So, Miss V will be getting at least daily nebs until the weather warms up & stays that way. The weather forecast for our area is to be around 70 degrees by Friday, & then back down into the 40's & 50's with rain again by the middle of next week!!! Maybe by the time summer gets here it will feel like spring!

Happy Easter!!

2009-04-12T16:15:00.003-04:00

Boy has it been a busy weekend! I know its been a while since I've posted. But last week my uncle was in the hospital because he had a blood clot! We think that there's something in the water around here. He is the 4th person in my family to have a blood clot - whew! So, because he was in the hospital, the girls & I entertained their kids (ages 8 to 12). Needless to say, there was a lot more noise, clutter & commotion around here!

Friday afternoon we colored Easter eggs:0) They all had so much fun, including Miss Vaeh! She had to have something to do while waiting for someone to pass her an egg, so Mawmaw had her 'stir' the dye - what a riot! She grabbed the spoon & stirred with all her might! Too cute!

Then this morning, we all got ready & headed down for the Easter contata at church. The girls looked so pretty all dressed up in their new dresses!! Although I don't think Miss Vaeh will be able to wear hers again:0( It is absolutely beautiful & fits great everywhere but... the chest! I was just barely able to get it zipped up! Well, at least I was able to get it on her this morning & get pictures of her in it!

Here's some pictures from our weekend!

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Hope everyone had a wonderful weekend! Hopefully some warmer temps are on the way on a more regular basis... I can't wait to get out in my flower beds & get things planted!!

Kids!

2009-04-02T09:46:00.003-04:00

Okay, so for how long did I wish that Vaeh would be normal? Well she's getting that "normal" thing down pat! Not only does she act like a very normal 2 year old & a very normal little sister, but she also gets bumps & bruises in a normal sense. (Just now as I'm typing this post, I can hear her & Gabby getting into a little scuffle - must not be too bad, though, Gabby didn't yell "MOM!" - LoL)

We usually make it up to Mawmaw's shop (the florist store) once a week. We tend to pop in after we drop off Gabby at school. Yesterday happened to be our day. We stopped to pick up something that they needed dropped at Gabby's school, & they offered lunch. Plus, if I were to leave without Vaeh getting to see Mawmaw over lunch, I'd be mud!

Since there's not much time after that until Gabby needs picked up, we just hung around & talked with the girls. There's 3 girls other than my 2 aunts that work in the shop & Vaeh has fun with all of them! Missy takes care of stuff out in the green house, so her & Vaeh are now best buds. Vaeh LOVES going out to the green house. I told Missy that I'd bring Vaeh's high chair up & we'd set her out there when Missy's working & let Vaeh play in the dirt! I'll be sure to get pictures if we ever get around to it!

We were up in the main part of the shop & Miss V was busy running around between work stations. My Aunt Deb was taking a step back & didn't see miss thing & ... BOOM! Vaeh fell down. Usually no biggie & I was trying to blow it off, but Deb says "she hit when she fell." So when we were checking her over, we found it. There was a red line on her chin from where she had hit the edge of the shelf. It wasn't bleeding too bad, just a bit that anyone would expect. But the closer I looked, there was a very tiny gash. It was open, but again not bleeding too much. It was one of those cuts that if I'd taken her in to the ER they'd probably have thrown a stitch in it just to charge the insurance a little more (LoL)!!

So, Nurse Mommy back to work! We put a band aid on it after cleaning it & putting ointment on it. I pulled the band aid a little snug to try & hold the cut together. When we got home, it looked like it had bled some, so I took the band aid off to check it out. It had already closed!! But just to be on the safe side, I put a few steri stips over it. (They look better than the band aid I think...) Its a good thing I kept ahold of all the stuff we used to use for Vaeh's NJ tube:0) (I'll have to tell you all sometime about our experiences with changing the tape on THAT!) Here's what she looked like this morning:

It looks much better in person:0) The orange -ish stuff around the edges is an adhesive bonder to make them stick! So my hoarding of medical supplies comes in handy!

You wouldn't even know that she'd done anything this morning.. she's just as "normal" as ever!

She's baaack!

2009-03-28T11:35:00.003-04:00

No, we didn't go anywhere. But ever since they put Miss V on this revatio, she's really been different. She had lost some weight. Enough that even the pc mentioned how skinny she was at our last visit - "she used to be... fuller?" She's down to skin & bones. At one point she was just under 24 lbs. (remember she had been near 27 lbs at one point!)

After we started the revatio, she became very sleepy, with very little energy during the day. The meds coupled with a double ear infection followed by an upper respiratory infection all in the same month really wore her down. Plus I have to wake her up between 11PM & midnight, so her sleep scheduled has been really messed up & that hasn't helped the energy level either.

Well, she's been making up for lost time:0) The past week or so, she has been eating everything in sight! Her appetite seems to have returned. For example, the other night Jon was home. He had been sleeping when we ate supper, so he ate about an hour after we did. Miss V was at his heels the entire time he was eating... begging "I want some!" She has done nothing but eat for the past 3 days, from the moment she wakes up until the moment she goes to sleep - "eat!" She's finally starting to fill out some, which is making everyone happy. Lets just say that even Daddy, who NEVER worries, was starting to get slightly concerned. But she's finally back to her old self.

Her energy level has returned as well! Right after starting the meds (which includes the broken sleep schedule) she would constantly say through the day "nigh, nigh" (night, night). She was easy to get down for a nap, that could last up to three hours. Then she was ready for bed sometimes by 6:30 - 7PM! Really not anything like the normal Vaeh. Well just like her appetite & eating habbits, her energy level has increased, too! She's busy from morning to night, not usually wanting to take a nap anymore!

Sorry I don't have any pictures... I took some of her the other night right after her bath, but she looks like a skeleton with skin on it & a round little tummy! They were almost frightening, so when I get some better shots of her clothed (LoL) I'll put them up!

We've also been in the planning stages of transitioning her out of early intervention into head start. Here in Ohio, Help Me Grow is the EI program. Children can receive services up until they are 3 then they have to transition. Well, Vaeh is just about 6 months away from turning 3, so the process has begun. And from what they tell me, she'll be in preschool this fall - ugh!! Okay, I love all this "normal" stuff, but give a Momma a break! Let me adjust a bit before throwing me another curve ball! Oh, why not - go ahead & give us your best shot! We're up for it!

Hope everyone has a great weekend! Its finally starting to get a little warmer... hope everyone is enjoying the weather!

Spring is in the air & a quilt square

2009-03-17T13:27:00.006-04:00

Its been soooo nice outside the past few days... & the girls have been loving it!! We had gotten a swing for Vaeh so that she could play on the swingset, & Jon got it put up this weekend. So needless to say, we've heard 'wing' (translation = swing) a lot the past couple of days. Then yesterday we had the bicycles, or as Vaeh says 'bikle' out & they were both soooo adorable I couldn't stop smiling!

Look Mama, I'm flying!!

On the slide for the first time - wheee!

Mom, that's enough - okay, maybe not:0)

Room-a-zoom!

I love seeing them outside, playing together, in such a "normal" way!! I know Gabby loves being outside, but now I think that we've created a monster:0) Vaeh is going to be just like Gabby in that we're going to spend a lot of time out doors this summer!

As for the quilt square... I got an email today that said that Vaeh's quilt square was done. There was a picture of it attached to the email...

I had found the CHD Quilt Project & requested a square be made for Vaeh, but I had forgotten about it. I can't even remember when I requested it, but today I got the email with the picture of it:0) It is a quilt square that will be put together in a quilt with 41 other squares that were made in honor of other CHD survivors from all over the world! If I remember correctly, they'll be sending me a picture of the finished quilt - I can't wait to see it!

Hope everyone else is doing well & hopefully this nice weather is working its way towards becoming a staple! I ready to get outside & work in my flowerbeds!

**PS - hope the pictures give you a fix, Kathy!! :0)

Praying for Miss Grace

2009-03-12T16:29:00.005-04:00

***Update: Miss Grace is out of surgery & extubated!! She's having some trouble with her labs so they are giving her some blood, but overall she is doing great!!

(original post follows...)

Isn't this face just tooo adorable?! This is our heart friend, Miss Grace. Since embarking on this journey through the world of CHD's, we've become friends with Miss Grace & her family. Today, they all could use your prayers. Miss Grace is currently in the OR at Riley Children's Hospital in Indianapolis for open heart surgery.

Its an all to familiar place for us, as well as a lot of our "family" that we've gained through this CHD world. And if there's only one thing that we've learned its that you can never have enough prayers!

So, if you'd like, just pop over HERE & let Miss Grace, her Mom & Dad, & the rest of her awesome family know that you're praying for them! At last update from Amber (Miss Grace's Mommy) they had gotten all of her lines in & were about to go on bypass, but that was earlier this morning. I'm sure things are going well & as soon as she can they're be an update, but lets just keep them covered in prayer!!

Pray for me... pray for others

2009-03-11T09:37:00.003-04:00

I'm participating in "Pray for Me... Pray for Others" on the Riggs Family Blog. Check out their blog to add your prayer request. Join a community of friends who care about you, and hope you will care about them.

On another note, please keep little Miss Gracie & her family in your prayers today & through the next week or so. They are headed to Riley Children's Hospital in Indianapolis for Gracie's heart repair. The surgery is scheduled for tomorrow & today they are going for the typical pre-op stuff. As we all know how this part of the journey can be, please keep them in your prayers!

Okay, so enough of being sick...

2009-03-09T22:34:00.004-04:00

Yes, we all had it last week. BUT we're finally getting back to everyone feeling a little better in the house:0) I was the only one who didn't go to the doctor last week. Jon even went to see the doc & took 2 days off work - totally out of character for him.

Vaeh does have a little bronchitis like thing going, Gabby ended up with an ear infection after having the upper respiratory stuff, & Jon was officially given the URI diagnosis. So needless to say, we have antibiotics everywhere in the house (LoL)!!

Now, on to some better news... Vaeh saw Dr. Butto today for another follow up. (Someday we'll get to a point that we can go longer than 2 months without seeing him... although we'll probably all go through withdrawl!!) She had a blood draw done last Monday to check her iron level, & we found out that we can stop the iron supplement that she had been on - yay!!!

Then on to her echo. Of course we had the echo tech that really seems to be somewhat uncomfortable with kids. Every time she does Vaeh's echo, she always has to ask for help, because she forgets that Vaeh has a right aortic arch. Then today, she forgot to look at her tricuspid regurg - which as Dr. Butto said is "the most important thing I want to see." I do know that after he looked at it, it was still okay - whew! Everything still looks good, & her RV pressure - that put her on the revatio (aka: viagra) is ... doing its job!!! Her RV pressure is still quite high, but it has lowered from 60 last month to 50 today - YAY VAEH!!! So we continue to take the meds & try to get the pressure to come down even lower. From what I understand, he wants her somewhere in the 30 to 40 range, but don't quote me.

So, all my worry was for not... as usual! Its so nice to have very 'uneventful' appointments. This boring life is quite nice - ha ha!!

She still is quite skinny, though... she weighed 25# today. That made me feel a little better though. At the pedi's office last Friday, she supposedly weighed 23lb 10oz. Dr. Butto mentioned it today, but didn't seem really concerned. She eats like a little monster, so I guess I'll just have to start adding heavy whipping cream to everything she eats! Hopefully when we go back in May, she'll have put on a few lbs! Oh, well....

Hopefully everyone else is staying healthy! I promise, I'm sterilizing these posts before I send them so that we don't share all the lovely germs we've had here!!

Sick... again:0(

2009-03-02T21:40:00.002-05:00

Yep, its back!! It all started Saturday afternoon with Gabby not feeling well. She got sick a few times & then spiked a temp. Poor thing... was absolutely miserable for about two days. Today, she seems to be feeling much better thankfully.

The weekend before I had the touch of the stomach flu, & this time its the chills, fever, stuffy nose, cough & chest congestion. I feel like I don't remember what healthy is. Oh, & Daddy even got hit this time. He's spending his misery in the bunk of a Freightliner.

Luckily, Miss Vaeh is just plugging along with her old standby cough! Nothing new (knock on wood...) so we'll keep praying that she makes it through this without having to endure anything more. Hopefully we can stay healthy until next Monday. She has her follow up with Dr. Butto & we find out if the revatio is doing its job. They'll check her pressures on an echo again. I swear she'll be able to do her own echo's by the time she's a tweeny-bopper! I'm hoping that we are able to lower her dose to twice a day. This every 8 hours thing (getting back up at midnight to give her her revatio) is for the birds. That, & maybe we can drop the iron. She's been on that since her cath - her hemoglobin was a little low.

Hopefully all of our "blogging family" is doing okay & staying healthy... I sent sanitizer before this post, so hopefully that prevents any germs from spreading!!

CHOMP!!!

2009-02-27T17:25:00.003-05:00

I think I may change Vaeh's nickname to "Chomp". She's really starting to come into the 'normal' stuff that little sisters do. Today wasn't the first time this has happened, but it was the worst. Don't worry, its nothing too serious. But when I got home from picking "the cousins" up from school (who are spending the night with us:0)) this is what Daddy had to show me:

I know its hard to see, but that little red mark on Gabby's back by her left shoulder, is a bite mark!! Hence the name "Chomp." She's such a little stinker! Ever since we lost her tube, she's really gotten good at doing the little things... like taking a toy that someone else had, or biting. I don't know how to stop the biting?!?!

So, we'll see how the weekend goes, hopefully no more incidence of biting. That, & hopefully my house will remain standing since I have 5 kids here from the age of 12 down to 2. Hope everyone else has a good weekend!!

Looky here:0)

2009-02-21T22:41:00.002-05:00

Can you see what my Mommy did to me?

If you look really closely, you can see...

Did you find it? Maybe take a second look...

Yep, we did it. We had Vaeh's ears pierced today!! I've wanted to do this for so long, but hadn't yet because of upcoming surgeries/procedures. And with knowing that you have to leave them in for 4 to 6 weeks in the beginning, we didn't want to have them done only to have to take them out for something. So, with knowing that nothing is remotely in the works, we did it!

She did absolutely super! They marked her dots on her earlobes, & by then she was starting to look at us like "what are you guys up to?" We had her sit on my lap, & Mawmaw was in front of her, distracting her. The gals that did the actual piercing stood on either side of her, lined up the 'gun' & 1-2-3! Just like that they were both done at the same time. Of course she cried, but when we showed her them in the mirror, gave her a loli-pop & some love from Daddy, she was happy as a clam.

They are so dainty... girl-y like & I love it! Just another step in the 'normal' direction! She's prancing around the house tonight like "look at me, I'm the prettiest girl ever!" She's just so darn cute.

Catching up...

2009-02-20T17:33:00.003-05:00

Somehow I seem to have gotten behind on everything! I don't know how it happened, but I've been missing a lot in blog land! So, I apologize for not commenting, but I promise that I'm reading:0)

We were finally able to get Vaeh started on the revatio, thank heaven! I just hope that its doing its job. She really seems to be more tired since starting it. Another 'behind' moment for me... I need to google the side effects from revatio because the pharmacy gave me nothing!! She's still fighting the stuffy nose, & even ran a fever (low-grade) a day or two, but seems to be rounding the corner with this cold/infection or whatever it is.
** Here's a question for all my heart momma friends... do your little one's seem to get a bit cyanotic/bluish looking with a cold, even after a repair? Vaeh's had a couple of times where her nail beds have been off color, & her lips have even looked a little funny. (I should have kept ahold of that pulse ox monitor!) But at the same time she has these episodes of looking funny, her hands are also VERY cold!!! This is really hard to get used to since she was always such a hot box before her repair. The other day the speech therapist was here, & her lips were nearly purple. Although this could have been due to her having on a purple shirt! (LoL)

Since I mentioned her therapy, I should give you all an update on that as they were all back in this week. This is the first time since the end of November that we've been able to connect with them because of 'this & that' (all the surgeries & hospital stuff). The speech therapist was very pleased with how well her vocabulary is growing. There was a couple of things she suggested, to kind of help her begin to make longer phrases & sentences, as well as getting the plural down pat. So, basically she's caught up for the most part with speech.

Then on Thursday, PT & OT were here together. They always come & do a 'co-treat' where they work together, & this particular session was the most I've seen them do with her! (Yes, we dearly miss our original therapists). She was able to stack blocks, although she was more interested in knocking them down. She could also put the circle, square & triangle back in the puzzle. Then they gave her a pencil & she was able to draw a circle, line & tried to make an "X" as best she could. So, having done all that, she comes out at 30 months. Let's just say that I giggled, because she's only 29 months old!! HA!!! She's finally ahead of the curve! I never thought I'd see that happen:0)

When PT worked with her, she showed off how she could get up & down off the couch, which for me was quite impressive. She also went up & down off a step with a little help. While she was working with OT, she got down into a tall kneel - another check off the list! For PT she tested out around 19 months, which is great:0) Just 6 months ago when the did the official recheck, she was only about 11 months, so she's gaining quite a bit! The PT did say that what's basically holding her back from testing out at a higher level is that she's not quite running yet (15 months) & she's not jumping, which the therapist seemed to feel that those things were required a little early on the list.

In addition to all of the hubbub with Vaeh, poor Gabby has had 4 deaths - Bonnie & Clyde #1 & #2. We got her a small 5 gallon fish tank for her birthday & we've been through 4 FISH!!! Who knew goldfish could be so hard to keep alive!! We're in the process of trying again... I'll let you know how we fair with the next set! We've all got fingers, toes, & everything possible crossed!!

Hopefully everyone is doing well & staying healthy! Oh, & if you get a chance... stop over & say Happy 2nd Birthday to Elijah! Hope everyone has a good weekend!

Back to work!

2009-02-13T10:21:00.002-05:00

I'm getting sooo excited about going back to work:0) I start tomorrow... yep, Valentines day. And yes, I'm going back on Valentine's day & on a Saturday voluntarily.

Okay, so its only for one day. And you probably wouldn't consider it working, but more like slave labor. I'm going to help out at my Mom & her sister's shop. Its a florist & wedding decorating shop. So as you can imagine, tomorrow will be very BUSY!! They've actually been busy all week - which is a good thing for any business owner in this economy!! I'm just excited to be getting out of the house to interact with other adults without having my girls along for the adventure.

Don't get me wrong, I LOVE being a stay at home Mom. But sometimes for sanity's sake, you just need to interact with other adults without children around! It will be nice to have some Mommy time - and let Daddy & the girls have some Daddy -daughter time together!

On another note... we finally were able to get the revatio filled & start Miss V on it. Its crazy how many people it takes to get something accomplished. When the whole denial thing happened Monday afternoon, the clinic in Lima said that Dr. Butto's office in Toledo was working on getting the pre-cert done & that I should call them to check on Tuesday. So, I called Tuesday afternoon (because the gal in Lima said it shouldn't take more than a day...) & had to leave a voice mail. No biggie. She did call back on Wednesday while I was taking Gabby to preschool. Luckily Jon was home. She told Jon that she would be working on it on Wednesday & let us know when she got the approval. Well, yesterday morning she called again - and talked to Jon again, & said "well I'm going to work on this today so we can get you a refill." Jon explained that we weren't waiting on a refill but the initial auth to get her started on the meds!!! Well I think the light bulb finally turned on. So yesterday afternoon, the Lima clinic called & she had gotten it approved for a year!

I must say that since there's been a change in Dr. Butto's nurse(s) I've wished his original gal, Patti, would come back!! There are two gals now doing the work that Patti used to do & still not doing as good of a job as she did - ugh!!! Oh, well, we've got her meds & started them.

Well, hopefully everyone has a good weekend:0)

Dylan

2009-02-11T11:40:00.005-05:00

2nd UPDATE:
He's home! A repeat scan the following day showed absolutely nothing!!! After the past 2.5 months, no one can tell me that prayer doesn't work!! Thanks to all of you:0)

UPDATE:
Just to give a quick update on Dylan... they are now saying that it is NOT a bleed, but just a concussion. So, there's some questions to be answered, but basically Dylan is doing well. They're going to keep him overnight just to keep an eye on him, but things are looking good! Thanks for the prayers:0)

** Original post follows...

Hi, everyone:0) I know that this blog is about Vaeh & her journey through the world of CHD, but I knew I could come to our blog family for this.

Jon & I's nephew, Dylan, is in the hospital right now & we need all the prayers we can get! He is 11, & we all know how rowdy 11 year old boys can be:0) From what I understand, he was at a friend's house this weekend goofing around & bumped his head. His Mom took him to the doc's on Monday & they wanted to get a scan of his head, which he had done yesterday (not sure if MRI or CT). So, the doc's office called Chad (his Dad) & told him that "he has a bleed. He's allowed to go to school, but shouldn't be rough-housing, etc." So the plan from there was that Mandy (Mom) was going to call the doc today & get some answers.

Earlier today the school called Chad & to make a long story short, they are now in the ER with Dylan being evaluated. I'm not sure of the details (ie: what type of bleed, how bad, etc.) but we all know the power of prayer. So if you all wouldn't mind keeping Dylan & the family lifted up in prayer, we'd all greatly appreciate it! Thank you again, from the bottom of our hearts for your prayers for our family no matter what the need!

Bummer...

2009-02-09T17:24:00.002-05:00

So, Vaeh had her follow up appointment with Dr. Butto today. It went fairly well, despite a few bumps in the road. Her echo & EKG looked good, with him noting that her heart function itself was good. Basically heart wise she's doing fine. Her lung pressures are still elevated. Meaning she has pulmonary hypertension.

I had heard them throw this around before when she was younger, but at that time her heart was a bigger issue so it was never really brought to our forefront. So, I had never really considered it. But now, since her heart is finally repaired & functioning well, this seems to be our issue now.

Dr. Butto said that basically the oxygen was doing the job, but that its so inconvenient that we can look at other options. He put her on revatio, which if anyone knows about vaso-dilators, this drug is in effect viagra! HA! My 2 year old GIRL is on viagra!! (LoL) This will help to lower her hypertension in the lungs.

Now for the even funner part of my day... insurance won't cover it. UGH!! It took me nearly an hour to find someone who could mix it (as it is a compounded drug) & the soonest they could have it is tomorrow. So, when I get home, there's a message that they can't get it until tomorrow & that the insurance won't cover it. Here we go again. So I called the pharmacy, the doctor's office & I think we've come up with a solution. Dr. Butto is going to call the insurance & basically tell them why they have to approve it. Hopefully it gets approved, because this is her secondary insurance that's denying it & the remainder of the bill is over $100!!

So, overall her heart is great, but the lungs are still an issue. So, if you all would keep Vaeh in your prayers, we'd again greatly appreciate it! As Jon said in the last post, you all will never know how much you all mean to us & the support that you give us! Thank you from the bottom of our hearts!

Oh, by the way - Happy Congenital Heart Defect Awareness week!!

Thanks to everyone!

2009-02-08T11:01:00.003-05:00

Hi every one! Jon here. Don't worry, everyone is fine, usually the only time I leave a post on here is when something is not right, but not today!

This is something that I have been wanting to do for a while now and have finally gotten the chance to do so.

Just some quick background for those who don't know, I am a truck driver, and ever since our little Miss V. came into our lives, I had to go from driving local, to going over the road to make ends meet. I have always loved driving, but my family is so much more important to me, but when circumstances arise, you have to make sacrifice, and that's what has happened. I thank the Lord for giving me the skills to do it, it's a killer sometimes, but I get through. I normally leave out on Sunday night, and don't get back home till Friday night, sometimes, I do get home through the week, when things are slow, so with the economy the way it is right now, that is more often than usual.

So what I am trying to say is first and foremost, I give our Lord and Saviour all the thanks and praise for keeping me safe while I am on the road, and my three girls, Tina(my SUGARBABE), and my two Princesses, Gabby, and Miss V. safe and taking care of them while I am gone!

Now, on to all of you, from the bottom of my heart, I can not say it enough, but THANK YOU!
Everyone of you has been such a blessing to our family, and the love and support that you have given us is such a blessing. Not only have you helped Tina get through some tough times, but you have also helped me by being there for Tina when I am gone. Your thoughts and prayers have really helped her when I haven't been home, and I can not Thank you enough for that!

So again, first and foremost I again thank our Heavenly Father for all his blessings that he has given our family, and for placing all of you in our lives! I again thank everyone of you for everything, and we pray for all of you daily, and ask God to touch your lives like he has touched ours, and remember, one of my favorite phrases, "Don't tell God how big your storm is, tell the storm how Big Your God is!"

THANK YOU ALL again!

Love and Prayers to all,

Jon

Lemonade...

2009-02-06T16:51:00.008-05:00

So, I had this comment left... someone has given me something. I was honored when I linked over to Amber's blog & saw that she had given me this lovely award...

Thanks, Amber!! You're so sweet to have given me this:0) So, now its my turn to share the lemonade!

Here's the rules:

1. You must link back to the person you received the award from.

2. You have to nominate 10 bloggers who are deserving of this award!

So, here's who I want to share this with...

1.) Krista

2.) Vanessa

3.) Kathy

4.) Megan

5.) Carley

6.) Ana

7.) Mina

8.) Karen

9.) Stephanie

10.) Hollie

*****

Now to update on how we're doing here:0) Despite a few coughing fits, Vaeh seems to be turning the corner on beating this silly ear/sinus infection thing. I think my bug is finally leaving to take up residence somewhere else... hopefully not via the computer to any of you (LoL)!! Hopefully everyone else is doing well!

Sick little girl:0(

2009-02-02T17:28:00.002-05:00

So, Vaeh is really taking to this 'normal' thing. She & Gabby both had snotty noses last week, & both developed the cough that goes along with post nasal drip. But last night, Vaeh decided to spike a temp... 102.4. So of course we broke out the motrin, which took care of the fever. This morning, she didn't have a fever, but was grabbing at her right ear.

Off to the pediatrician we went. Gabby stayed home from school, so she tagged along. Vaeh did have a low grade temp when we got there, but not too bad. During the exam Dr. McNeal found fluid in both ears, plus the ever lovely sounding lungs!! Poor kiddo:0(

So, yet another round of antibiotics. They put her on omnicef, which you'd think that all pharmacies would have, right? Nope! We use the WalMart here in town, much to my dismay. When I dropped off hr scripts, they said it would be 30 minutes. So, after an hour, they still didn't have it ready! Finally someone told me that they didn't have any in stock... WHAT?!?! You mean to tell me you let me stand around here (after wasting time walking around the store) for 15 minutes & didn't have the courtesy to tell me this?! So I told them that I'd be back later (this so that I wouldn't blow my cork & just rip them a new one!!). So my Mom called before she went out to pick it up & they have the generic, but insurance won't cover generic...UGH!!!

Do you ever feel like you're being given the run around & buried at the same time?! I think I need to soak in the tub... Calgon, take me away!!

Hope everyone else is staying healthy. And if you all would, keep Elaina in your prayers. She was having surgery today, I believe they're doing her Nissen.

Serious.Life Magazine

2009-02-02T09:24:00.002-05:00

I wanted you to know about this publication I’m a part of called Serious.Life Magazine. They just published the February issue today, and I am in their Featured Blog Directory. It’s a very high quality magazine… you’ll really like it.

The magazine includes a lot of great content from bloggers you’ll appreciate, as well as great features, photos and other content. The magazine is owned and published by a family who have seven kids, three adopted and one who has Leukemia, their daughter, Abby (www.riggsfamilyblog.com). The magazine gives away a bunch of ads to charities and ministries. Besides great articles on interesting people, there is a lot about family, adoption, personal finance, spiritual life, humor… all sorts of “life” topics.

Again, the subscription is free, and I know you’ll enjoy the magazine, so take a minute to check it out and sign up to get future issues. www.seriouslifemagazine.com

Does it ever stop?!?!

2009-01-28T13:03:00.004-05:00

So, this is what we woke up to this morning...

The street in front of our house.

A neighbor's truck sitting on the street (before the plow's).

Right in front of the garage, about 6" deep.

It drifted up to about 2ft. deep in places.

It started snowing yesterday afternoon around 3PM, & by 8PM they were already delaying school! So, of course all the kids are having a ball with a snow day today. I went out & cleared off the driveway with the snow blower & still couldn't get all of it because I ran out of gas! Don't think I'll be running out to get any anytime soon!

On another note, Vaeh's stoma is COMPLETELY CLOSED!!! The nurse from the surgeon's office called the Tuesday after they took it out & said to watch for a possible "leak" but she still hasn't had ANY drainage from it!! I can't believe what a good healer Vaeh is:0) Sorry, but I can't seem to get a good close up picture of it... I need to get the ole manual out for the camera & read up! Maybe once I'm done cleaning for the birthday party this weekend... (Gabby will be 5!!!)

On another note, please keep Gracie & her family in your prayers. Michael & Amber took her for a third opinion & now have a scheduled surgery date - March 12th. I'm sure they'd appreciate any prayers you can offer!

Cool Give-away!

2009-01-24T23:35:00.002-05:00

I just found this give-away on another blog & I'd love to win!! You should pop over here & check it out!

Our climber!

2009-01-22T12:33:00.004-05:00

Here we go with another first for Miss V. Since the button is no longer a concern, she's started climbing. Today, she was able to get up onto the couch without any help! I think she's aged (as far as development) about 15 months since May! Take a look at our climbing monkey...

*** Make sure you pause the music & you can hear her say "can't."***

Make video montages at www.OneTrueMedia.com

After we took this video, her & Gabby were climbing all over that poor couch! (I say poor couch 'cause the silly thing is nearly 40 years old - no joke!)Its just so much fun to see her doing "normal" things.

On another note, here's a picture of what Vaeh's stoma looks like:

She had broken out in a rash after her cath, but we weren't sure what its from. Jon & I think it had something to do with the stoma dressing they put on, but the tape that we have to put on it keeps it from healing up. Its already closed from what I can tell! They said it may ooze/seep for a few weeks, but she hasn't had any drainage from it so far. So, my guess is that we're well on our way to having one less hole!

More news...

2009-01-16T17:42:00.007-05:00

So, I'm sure you've all seen the great news that Vaeh doesn't need that silly cannula any more! She's finally free. Well, while she was in the cath lab, there was some other work done that I neglected to mention. We didn't really find out that this was a possibility until literally minutes before they took her in here:

I photographed it, but I must warn you...

This photo may be somewhat graphic...

Wait for it...

Introducing for the first time since she was approximately 4 weeks old...

THE TUBE-LESS WONDER!!!

This is the only "mic-key" you'll ever see on me again!

Yep. She's COMPLETELY tube-less. As Dr. Butto was going over the consent for treatment, etc., he asked if we had any questions. Jon asked about when we could have her button taken out. Dr. Butto asked 1.) does she eat okay?, & 2.) how long has it been since you used it (nearly 5 months!)? He then asked who (MD) put it in, & since the doc who did it was at this hospital, he set it up so they could take it out while she was under anesthesia. So, now all we have to do is wait for the stoma to close. If its not closed (which it will close on its own!) by her follow up with Dr. Butto then we'll talk about surgical closure. But for now... NO TUBES!!!

For as lousy as 2009 started out for us, its sure shaping up this week! Hopefully everyone else is having a wonderful year, too!

Cath... over!

2009-01-15T23:45:00.006-05:00

Are you all chomping at the bit yet?!?! Well, here's how our day went...

Feeling quite relaxed & ready for a nap.

Daddy talking to Dr. Butto before the cath

The day started off not so hot, but once someone finally told them that we were there, it improved. They actually started her about a half an hour late, which I didn't think was too bad. Dr. Butto told us that he was going in with the intent of ballooning, but that if things looked okay, then he may not have to balloon anything.

So after the cath & following discussion, we got to look at the moving version of this...

They were actually able to print out a still shot from her cath film (sorry about the poor quality pic - I didn't have a scanner). Doesn't she look like she has an octopus in her chest?! (lol) The ring is her valve inside her conduit. Then of course there are the sternal wires & the catheter wires. He actually said everything looked really good & he didn't feel he needed to balloon anything. He did check the pressures on room air & said that there wasn't that much difference. Then he noticed she still had one little collateral left that they weren't able to move (too difficult per Dr. Bove her surgeon) in the left lower lung area. He checked, & basically she was getting double blood supply to that lung with that collateral still being connected. He checked its pressure & she was getting a lot of pressure from the aorta via the collateral, so... he coiled it.

So after she was up on the floor & the residents okayed it with Dr. Butto, she now looks like...

"Look, Momma... no cannula!"

He said that she no longer has to wear the oxygen! So, when we go somewhere I can just pick her up & GO!! I'm not sure I'll know how to act or what to do! Thank you so much for all your prayers. The pictures above & how our day went are proof positive that prayer DOES WORK!!! Thank you all again!
(Here you go, Vanessa!)

CT down, Cath to go...

2009-01-14T16:27:00.003-05:00

So Vaeh had her CT scan this morning. Everything went well, except for the IV. Poor Vaeh & poor nurse, it took 3 pokes to finally get it in. The first two they were able to get a vein, but when they tried to flush it the vein blew! Again, she has such scared veins, which makes for hard sticks:0( But the 3rd time was a charm today.

They gave her noctech (sp?) for sedation, which usually takes 10 to 15 minutes to take effect. Oh no, not Vaeh! Little stinker was asleep in 3 minutes, & not just sleepy - completely out! Jon & I had to get blood work done, so we took off to do that while they did the test. When we got back, Little Miss V was still quite sleepy, & fell asleep nearly as soon as she hit the car seat.

We finally got her awake around 3 PM. She & Gabby played until... the belly flop on the floor interrupted! Poor thing was still a little woozy from the drugs that her reflexes are a little sluggish yet. She did a belly flop & ended up with a bloody nose! What a fun day. But now she's really starting to wake up & return to ornery, normal Vaeh:0)

So, now we just hang out until tomorrow morning. We have to be at the next hospital on the list at 10 AM. The beginning to another long day. Hopefully everyone else is having an uneventful week! I promise (Kathy :0) ) that I'll update periodically tomorrow! Until then...

Here we go...

2009-01-11T20:17:00.002-05:00

Well, tomorrow begins a week that I'm dreading. Vaeh has angioplasty on Thursday. She's been through this so much that it should be a snap to get through one of these. Realistically the cath or CT scan doesn'tbother me. Its the thought of putting her under anesthesia & intubating her again. I know she won't wake up on a vent, but I'm just not looking forward to the whole scenario.

Not to mention the fact that we have to return to a hospital that I don't really trust. This will be the third time she's been there & the two previous times before, something has gone wrong. The first stay, they dried her out because she got back from the cath lab so late they didn't have any way to get her formula ready. Then the next day while performing a scan they pulled her mic-key button out. The second visit the radiology tech & I about went rounds - meaning that had I not used every ounce of self control she would have ended up looking at the ceiling! I'm praying that this time everything goes smoothly & we get out of there without any problems.

Although tomorrow isn't such a big deal (Vaeh has her routine date with Dr. Butto!) it is the start of our crazy week, & I'm not quite back to 100% - lifting her is going to be quite a task! All this, & we just finished a crazy weekend with my cousin getting married - & both girls were in the ceremony! I'll try to get pictures of them up soon! Too precious!

Hope everyone had a great weekend & all are doing well. I'll try to keep everyone updated about Vaeh's CT scan & angio later in the week. Please send up an extra prayer or two for us this week - we really appreciate them!

Finally, something fun!

2009-01-04T21:02:00.003-05:00

It seems as though all we've been posting about on here is surgeries, complications, upcoming tests, etc. Well its finally time for something lighthearted & Vaeh related. She's really been taking off as far as her speech, & her personality is just flourishing. So, today Jon was finally able to capture this new thing she's been doing, & its just so darn cute I had to share it.

So, here she is... the NEXT American Idol!
(**Be sure to scroll to the bottom & pause the music so you can hear the songbird!)

Photo and video editing at www.OneTrueMedia.com

Hope you're all enjoying the new year!

Back in the saddle... again!

2009-01-02T18:55:00.002-05:00

I'm finally home, again (lol)! It took all day to get my lovenox approved, but finally this afternoon they were able to give me the meds so that I could leave. One of our family friends came up to visit with me today, & then offered to bring me home - Thanks Bill!

So around 5 this afternoon I got home, & had to give myself a shot! As Jon said, the CT scan was negative (thank GOD!) so the ER doc wanted to do a doppler (ultrasound) of my leg just in case. Good thing he was being so cautious. So, with that they found the clot in my left calf. Once I was admitted (after all the craziness - ugh!) the doc said that thankfully it wasn't a DVT or deep vein clot, but just a superficial clot. Basically it meant that I still needed the blood thinners, but the clot is in a spot that can't travel anywhere... again, thank GOD!!

I'm now taking coumadin along with the lovenox injections, & have to have my INR checked on Monday. Then they'll adjust my coumadin from there. Like Jon said in his post, if it isn't one thing its another! They also said that the clot is most likely from the hysterectomy. So, now we just have to get past this & then we get to get Vaeh past her cath!

Thank you all sooooo much for your thoughts, prayers & support! We couldn't make it through without all of you!

If it ain't one thing...

2009-01-01T18:55:00.002-05:00

Hey everybody, Jon here, hope you had a better start to the New Year. Tina and I spent the day at the hospital. She woke me up this morning with chest pains, and trouble breathing, so I called my mom, and she came over to sit with the girls, and off we went. To make a long story short, trust me, it was a very LONG day, I thank God for giving me the patience, and strength to control myself, but anywho, Tina has a blood clot in her left leg, and the doc said she may have thrown a couple smaller ones through her lungs but, the ct scan didn't show anything. He sent us home, but, we ran into some trouble getting one of her two scripts filled, any guesses on why, if you said insurance, you are the 10 million dollar winner! Big shock huh?! Basically, the best thing to do right now was to admit her, surprisingly enough, the insurance approved that! Again I ask you to keep us in your prayers, and Tina or I will update again real soon! God Bless every single one of you and have a Happy New Year!! Jon

HAPPY NEW YEAR!!!

2009-01-01T00:02:00.002-05:00

Wishing everyone a blessed, healthy & Happy New Year!

Love,

Jon, Tina, Gabby & Vaeh:0)

Never ending...

2008-12-27T08:13:00.002-05:00

With all the hubub about Christmas last week & me not having my head on straight (thanks, vicodin!), I forgot about Vaeh's upcoming test. We had already rescheduled her cardiology visit as well as the CT scan for the week of Jan. 12th. She see's her pc on Monday that week, then on Wednesday we have to go to Toledo Children's for her CT scan. Going to be quite a busy week. Oh, but wait... it gets better!

Her latest heart cath was to follow her CT scan. The thing about the heart cath is that it has to be done at another hospital in Toledo, due to sedation/anesthesia issues. I'm not really happy with having to go to this other hospital because its one that 1.) we're not used to (even though she's had 2 caths there, & 2.) we've had some issues with the care she's received there with her past caths. Radiology tech's being rude & treating Vaeh, my Mom & me with such disrespect & disregard for Vaeh as a patient. (Let's just say don't get me started on this tangent!)

But the week of Jan. 12th just got a little busier. Dr. Butto's (her pc's) office called last Wednesday & they've scheduled her heart cath for Jan 15th, which would be Thursday that week. So, we'll be in Lima on Monday, Toledo on Wednesday, & Toledo again (down town - ugh! what a great neighborhood - NOT!) Thursday!

Now comes the fun part... figuring out the logistics. Do I take Vaeh to Toledo on Wednesday & just spend the night there, or do we come home, & make the drive again the next day. I believe her cath is scheduled for noon, so we wouldn't have to leave at the crack of dawn. The other thing I have to take into consideration is Gabby. She's been pushed to the side for Vaeh's tests so much & Wednesday is a school day for her, so I have to decide whether to keep her out of school & take her with me, or find someone willing to keep her on Wednesday & cart her to/from school.

And all of this while fighting hot flashes - UGH!!! Will we ever get away from Vaeh having tests so frequently?! Oh well, just another day in paradise, right?! (lol) What a way to start 2009 off!

MERRY CHRISTMAS!!!!

2008-12-25T08:40:00.003-05:00

We just wanted to wish everyone a very Merry Christmas!!

Know that we love you all & are glad to have such a wonderful family, here at home & in blogger land!

May God bless each of you this Christmas season!

I'm baaack!

2008-12-20T16:08:00.002-05:00

Thank you so much to all of my blogging family for your thoughts & prayers! Jon & I got home about 2 PM this afternoon. I'm doing fairly well. Quite sore, but so glad to be home!

Scott, my doc/surgeon, said that my pelvis was very narrow at the base, so it was no wonder that I was having such problems. Everything went according to plan & now all I have to do is heal. So now the fun really begins.

I'll be resting quite a bit, so don't know how much blogging I'll get done, but thanks again for checking in on us! Everyone else is doing well!

Hot Diggity Dog!!!

2008-12-20T10:23:00.002-05:00

Not really a whole lot to tell you, the girls are doing wonderful, and Tina called me about 9:15, and said the doc had already been in and said she can leave at anytime!! I am feeding Miss V her Kelloggs Special K and getting everything done so that I can go get Tina and bring her home!! She's dying to get on here and check on everyone, so I'm sure she will be on here later today!! Thanks again for all your prayers! Jon

Doing Great!

2008-12-18T22:54:00.001-05:00

Hey everyone! Sorry to keep you hanging on, it's 10:55 pm here, and I finally got a chance to give you and update on Tina. Let's start from the beginning, we got to the hospital about 10 am, they got her into preop pretty quick, then we had to wait. This was hard for me because I hate to see Tina stress, and she was ready to get the show on the road and get it over with, and there was nothing I could do. They did finally tell us that her doc was running behind due to a c section first thing in the morning that started his day off wrong and put him behind. This made me feel better because thay don't normally tell you anything or give you any idea on when. She was scheduled for 1 pm, about 2, here comes doc, he apologized for running late, and off she went. About 4:15 doc came out and said she gave him a little trouble, but nothing out of the normal, this kind of concerned me but he explained and everything was fine. He said we could see her in about an hour once she was back in her room, this had to be the longest hour ever, but we finally, got to see her. Her mom and I stayed with her for about an hour, then we left, this killed me because I wanted to stay with her, but I had to get home to the girls, a friend of ours came in and stayed with them until about 5:30, then my wonderful baby sister and her kids came over until I got home. I want to thank all of you for your prayers, and I will try to give you an update tomorrow sometime! Jon

Odds & Ends

2008-12-16T23:41:00.002-05:00

Just a couple of thoughts tonight:0) Boy did that sound profound or 'corney'? (lol) Vaeh is getting better, although this cough is just hanging on:0( It sounds so horrible, but yet otherwise she's fine. Her sats have been great (at a half liter) since Sunday evening, & is running around the house like an 'almost-normal' 2 year old. I did call her cardiologist's office & decided to reschedule her CT scan. Its now the second week in January (14th). Between her funny sounding lungs & this icky weather we're having, I didn't want to drive an hour and a half north into this stuff!

Speaking of the weather... if its going to be this cold the least it could do is SNOW! I don't mind winter when there's snow on the ground. I get to snuggle up in my blanket with my girls! But this icey stuff we're getting is for the birds! (Thanks for sending it my way Amber & Krista - lol)We have a winter weather advisory out until morning & they're talking about another system behind it. As long as its snow & there's a white Christmas I can put up with it:0)

The other thing is my nerves. I only have one more day & then its my turn to go to the hospital - ugh! Im ready to get this thing over with & not have the pain, BUT I'm scared to death about the surgery itself. There's this spirit of fear that seems to be enveloping me... So if you all wouldn't mind, please say a little prayer that things go well!

Hope everyone is warm & healthy!

Pictures... finally!

2008-12-15T16:30:00.005-05:00

What a silly group!

Gabby hard at work!

Are you sure this is how you're supposed to do it?

This is how you should be doing it!

YUMMY!

All the kids had such a good time icing the cookies last week! With everything going on around here, its taken me a couple of days to get some of the evience posted on here! Vaeh was just as "normal" as could be - licking the icing off the knife. So, we gave her her own knife (yes - I was right next to her the whole time:0)) & she had a blast!

I had such a good time doing this with the girls. It really felt 'normal' for a change & because of that I didn't care how big a mess they made:0) My cousins were over & always have a good time with the girls. The boys were having too much fun, though. They had icing all over their hands & faces! Take a look at these two!

What a couple of crazy kids!

"Joshy, the red-nosed 3rd grader!"

And just so you know, I DID send those boys home all sugared up! I'm sure that their Momma is ready to repay the favor to me!

This is no fun:0(

2008-12-14T12:52:00.002-05:00

So, early this morning we decided to take Vaeh in to the ER to be checked. Her cough just hadn't gotten any better, & she was really starting to rattle when you'd listen to her breathe. Something told my 'Mommy intuition' that I should check her sats & sure enough, she was down to low 90's, even dropping to 88%! Definitely not her norm.

So up to Lima Mawmaw, Mommy & Vaeh went. Of course they tried to start an IV (even though she hadn't been vomiting & she'd been eating good) & couldn't get a line. So they finally decided to just go with a blood draw & chest x-ray. Thankfully the blood work came back okay. Her chest x-ray was okay, but the doc said he couldn't compare it because their system was down (darn computers!). From what he described to me, it sounded better. So, after hearing that I had seen her most previous film, he brought this morning's in for me to look at. I don't think I've ever seen such a good film on Vaeh:0) He was quite comfortable with us bringing her home, knowing that I was pretty on the ball with her - FINALLY a doctor who doesn't think that Mom's are stupid! (I need to go back & clone this guy, huh?!!)

So we got back home around 8 AM. Vaeh & I both slept 'til about noon & she acts fine. She is on 2 ltrs. O2 now, but I"m going to try to wean her as I can. I'm also gonna call her card's office on Monday to see if we need to re-schedule her CT scan. She always has trouble after having anesthesia with her lungs if they're not so good to begin with! So we'll see where we go from here.

Hope everyone else is doing well. I promise I'll post those pics I've been promising - later:0)

Yep, still here...

2008-12-12T11:30:00.003-05:00

Sorry its been a while since I posted last. We've been busy with Christmas stuff here! I've been trying to get the cookies baked since I'll be just a couple of days post op before Christmas - boy that ruined my entire game plan!

Vaeh is still doing pretty well, although she developed a nasty cough with a runny nose. Still no fever. But I decided to fill her antibiotic anyway & start her breathing treatments back up. The combination seems to be helping! I just don't want her going into this CT scan (next week) & the upcoming cath with any cold symptoms at all! Last time, she ended up in the PICU for 5 days following her cath because of pneumonia. We've had our fill of that already & its not even winter yet!

We're going to frost some of the Christmas cookies that we baked this afternoon. We're going to pick up "the cousins" after school & come back & have a frosting party! I'll have two 11 year olds, an 8 year old, a 4 & a 2 year old all with frosting. Yes, I AM crazy:0)

I'll try & post some pictures & a video if I can later!

**On a side note, please keep Miss Gracie in your prayers. They had to take her to the hospital the other day & she's slowly getting better. In another note, there's a new family making their way into the blogging circle that have just found out that their baby has TOF. Please keep Baby David & his family in your prayers, too!

Back to the doctor we go...

2008-12-06T11:52:00.004-05:00

*** Update!!

Thank goodness for prayers & for quick in & out visits with the doctor. He basically said that she has a cold, especially since she's not running a fever. The nebulizer isn't necessary for now, & neither is an antibiotic. He did ,however, give me a script for a CXR & an antibiotic if she starts showing signs of needing it! So that made me a little more comfortable about things! Thanks for keeping her in your prayers - they helped:0)!

(Original post follows...)

You know, there are just some days where I feel like Vaeh can't catch a break. Today is one of those days. She got up in the middle of the night last night & Jon stayed up with her. When I got up this morning, she was lethargic & sounded very congested. Out comes the stethoscope. She sounds a little coarse/wheezy on the left side this time, so we're heading in to have her checked.

I was a little bummed that her pedi wasn't on call, because the one who is of course wants to see her & do some blood work. Can't just take Mom's word for it, cause I could be right & actually know my own child better than he does! This doc has a tendency to "educate" with a long explanation as to why he wants to do things. No thanks, I'll just take the meat of the story & get on with it!

So if you all would, send up an extra prayer for Vaeh that she won't need to be admitted & we'll only need oral antibiotics! Hopefully everyone else is doing well & enjoying the weekend! I'll update when we know more!

Bummer:0(

2008-12-02T22:25:00.002-05:00

This is no fun. I had myself somewhat prepared for going "under the knife" this week, & that dreaded phone call came early this evening. "We need to reschedule your surgery." My OB/GYN had a death in the family & needed to reschedule.

Can I just say "been there, done that!" We went through this with Vaeh & having 2 of her surgeries rescheduled. NOT FAIR!! I understand completely for my doc & his family's sake, but I'm really bummed. Plus this means that I have to endure this discomfort for 2 more weeks! My new surgery date is now December 18th. Yep, I'll have a very lazy Christmas this year. Oh well, for some reason I wasn't supposed to have surgery this week. NUTS!!

Although, this does give me more time to get things organized a little more for Christmas!!

Great give-a-way!

2008-12-02T09:55:00.003-05:00

Okay, so I've been following MckMama's blog for quite a while now. I love how she posts about real life & real situations/ solutions. This give-a-way was just too good for me not to post about! They're having a raffle-a-way for a camera package with some wonderful extras! If you click on the button at the top of this post, or on the right sidebar of the blog, it will link you over to MckMama's blog. The proceeds are going to a wonderful cause(s).

In other news, Vaeh is doing wonderful! No ill effects from her bout with pneumonia, other than these nasty lumps in her thighs from all the shots! Thanks, Amber for the advice - it helped immensely! She's still walking somewhat stiff-legged, but is now trying to bend her knees some!

Other than that, all is fairly normal. The tree & decorations are up (I'll post pictures later) as are the outside lights. And this morning there was quite a blanket of the white stuff outside! Now, I just have to get past the nerves about this Thursday. I have to be a the hospital by 9AM, & surgery is scheduled for around 11:45. We'll see what time they actually get me back there! So, if you all would, send up an extra prayer for me on Thursday?!! I'd really appreciate it! Hope everyone else is doing well!

Thankful...

2008-11-27T20:45:00.002-05:00

As everyone else is, today we are thankful. There is so much to be thankful for in our lives. First, we have a loving, merciful, faithful God! If I had nothing else, that would be sufficient. On top of this, I have a wonderful & loving husband, and two beautiful daughters!

This morning, as we were getting ready to go to our traditional family gathering, I found myself watching Vaeh - in wonder and amazement. She has come from death's doorstep, & now is an eating, breathing, walking miracle! She is a testament to God every second she is here! Its so hard to look at her little mouth stuffed full of goodies, & remember that just a few short months ago she didn't eat anything by mouth at all!

We have a wonderful family (both here & in blogger-land!) that we are blessed to have in our lives. We are so thankful for each & every one of you! This journey is that much easier because of all of you! So, to all our friends & family, we want you to know that we are so thanful for each of you! Have a wonderful Thanksgiving!

PS - On a side note... Congratulations to Andy, Krista & Seth Layman! Krista announced on her blog today that their family is growing!

Let's Go Blue!!

2008-11-22T12:53:00.004-05:00

Our li'l Wolverine!
Put me in, Coach! I'm ready to play!

Its game day for the big rivalry here in Ohio, but in this house we say "Lets Go Blue!" Despite being born & raised in Ohio, I've been a Michigan fan for many years. It all started back when my brother went to wrestling camp at the U of M. Ever since then I've rooted for Michigan.

So it was just icing on the cake when they told us that the best place for Vaeh to go for treatment was to the University of Michigan. I promise - it had nothing to do with my being a Michigan fan. Had they said go to Columbus we'd have taken her there.

So, our little Miss V is all decked out in her maize & blue today, despite the worst record in school history this season for the Wolverines. We always tell everyone that Vaeh's heart belongs to Michigan - literally!

Let's Go Blue! (even though we know its a long shot:0)

Let it snow! Let it snow! Let it snow!

2008-11-15T16:23:00.003-05:00

This was the scene outside our door earlier today! Our first cumulative snow fall!! I just love it - but only for a short time:0) This, coupled with the new look & sound of Vaeh's blog really makes it seem like Christmas time! It was such a pretty snow... with the big white flakes that just seem to float down to the ground. And it has stayed with us. Its not one of those coat the ground & then melt away. No, this one is hanging on for a while! Makes me want to snuggle down with a cup of hot cocoa & listen to Christmas music! Oh, I just love this time of year!!

Getting started early!

2008-11-14T23:15:00.003-05:00

Yes, I know that its like 40 days until Christmas but I couldn't help myself! I just love this time of year & I couldn't wait any longer to change the background. Or for that matter, to put up a new playlist! These are just some of the yearly Christmas songs that I love (btw - the "Blue Christmas" is one that Jon loves! He searches for it every year!)

I hope you all enjoy the change in music... I promise I'll change it back after the Christmas season passes. I just don't think that the Christmas season lasts long enough! Hope everyone has a wonderful holiday season!

Getting there...

2008-11-12T13:54:00.006-05:00

Waiting for Dr. McNeal to come in.

How do I get the wrapper off here?

Vaeh is really starting to feel better I think. She even wanted a sucker while waiting at the pedi's office. Her appetite has started to pick back up & she's drinking like a fish again. Today was her last round of this nasty stuff...

She's been getting two shots in each leg every day since Monday. On Sunday, it was two shots TWICE! Her poor little legs look like pin cushions! At least they did mix the drug with lidocaine which I think helped! As of this evening we don't have to have any more shots! When we saw Dr. McNeal today, she switched her to omnicef. Thank heaven!

As I mentioned in my last post, she saw Dr. Butto (her card) on Monday & he said that she'd be having a CTA (CT of the arteries in her chest) followed by her cath/angio. Well, the nurse from his main office called on Tuesday & said they had scheduled her CTA for Dec 9th. Well, I don't think I'll be quite up to an hour & a half drive just 5 days after my surgery, so she rescheduled that for Dec. 17th. Then while we were at the pedi's office today, Jon said they called again. This time was to say they had her cath scheduled for Dec. 8th! What?!?! If I can't make the CTA, I don't think a cath is going to make a difference. Besides the fact that she has to have the CTA before the cath. So, the nurse apologized & said that they would have to schedule the cath for sometime in January. What a crazy winter we're going to have. (We have a wedding in the family in January, too!)

So, Vaeh is close to being back to the normal "Miss V." Hopefully the CTA & cath/angio will go off without a hitch. We didn't discuss the button on Monday, but based on her weight today at the pedi's it shouldn't be an issue - she was 26.6 lbs!! That's my girl! Hope everyone else is well!