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!


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


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!