Thursday, December 10, 2009

"Poopy Dance"

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)



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!!!!!!!

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!!

Friday, December 4, 2009

December 5th...

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!

Thursday, December 3, 2009

UGH!!!

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!

Saturday, November 28, 2009

New look!

'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!

Wednesday, November 25, 2009

Catching up...

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!!

Wednesday, November 18, 2009

Saving Little Hearts 2010 Calendar

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!

Friday, October 23, 2009

"Tickle my feet!"

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!

Monday, October 19, 2009

Potty training!!

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!

Sunday, October 11, 2009

Still here...

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!

Saturday, September 26, 2009

An old friend :0/

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!

Thursday, September 24, 2009

Miss Moriah :0)

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!

Thursday, September 17, 2009

Happy Birthday, Miss Vaeh!!

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...

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!!

Sunday, September 6, 2009

New editions...

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!

Friday, August 28, 2009

Mistakes...

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!

Monday, August 24, 2009

One less...

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!

Friday, August 21, 2009

Prayers for Mr. Logan:0)




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!!

Monday, August 10, 2009

Littlest Hero's Project... part 2

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!

Tuesday, August 4, 2009

Littlest Heroes Project!

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!

Monday, July 27, 2009

This & That!

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(

Sunday, July 19, 2009

Busy!

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...



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!!

Monday, July 6, 2009

Here we go again...

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 ...



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!

Thursday, June 25, 2009

Catching up...

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.

Tuesday, June 16, 2009

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...



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!

Monday, June 8, 2009

I'm terrible!!

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!

Tuesday, May 26, 2009

Promised Pictures:0)

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!)



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!

Monday, May 25, 2009

Oh, goodness

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)

Friday, May 15, 2009

One year ago today...

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...


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!!

Monday, May 11, 2009

So much info... so little space!

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...





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!!

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!

Tuesday, April 21, 2009

I did it!!

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!

Thursday, April 16, 2009

Here we go again...


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...



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!