Vaeh's IEP

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.

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

"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)

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...

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

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(

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...

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)

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.