Just a little update

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Joined: 11/28/06
Posts: 848
Just a little update

I haven't posted in awhile so I thought I'd give a little update on us. We've had a busy Summer so far! As soon as school was out we took a vacation to the beach with my inlaws (we do this every year). The weather was perfect and we had a fabulous time! When we came back the girls had their dance recital which also went well (other than my inlaws being late and missing Alana's ballet dance.....ugh, they frustrate me some times!). Last week we went to Daytona for dance Nationals. The weather wasn't great the first half of the week but there were bursts of sunshine where we could go out and enjoy the beach/pool. Alana's solo was amazing and she made it to the Solo Showdown and got 2nd runner up for Title as well as 3rd place overall. My little perfectionist was upset she didn't get 1st but of course I was delighted with how she did. Always chokes me up how beautiful she looks up there! Her trio came in 4th and Madi's group got a high score but didn't place overall. Madi has decided not to compete next year so this was her last competition. Sad She just doesn't have it in her heart to practice so I will probably find a rec class for her (she wants hip hop) and we'll try swimming lessons out next Spring. She's thinking she might want to be on the swim team.

Alana has been having GI issues again. Sad She has diarrhea several times a day which leads to frequent accidents (almost daily). Her appetite has decreased some but not enough for me to worry about yet. At this point she's handling it well and has accepted that this is just how her belly works right now. I'm at a loss as to what to do for her and I'm still battling with the insurance company to pay for the $690 lab she had back in November. Insurance companies just suck! We're seriously considering a trip to Shands this Summer if things don't improve but I'm terrified we'll be stuck with the bill. On a positive note, she seems to be filling out a bit and doesn't look nearly as skinny as she once did. She looks very healthy actually, and quite muscular thanks to dance and gym.

Madi is doing great! Her RAD seems to be under control and I'm hoping that her PFTs in August come out good this time. She's learned to take her inhaler without the spacer and only a little assistance from us. She's quite proud of that achievement, lol.

I'd love to hear how everyone else's Summer is going!!!

Joined: 12/01/05
Posts: 1000

It's great to hear some positive news! I'm sorry you haven't been able to resolve the diarrhea issue. That must be so hard on her. Great to hear about the awesome dance recital. WTG Alana!

Our summer is going pretty well. Isaiah has been home for almost 2 weeks now after spending 3 months mostly in the hospital. We tried to put him in rehab, but he's been vomiting consistently 2-3 times a day (sometimes more), and the rehab facility just kept sending him back to the hospital. At least at home we can deal with the vomiting without making it an emergency. The most recent hospitalization ended up with his second deep brain stimulator needing to be removed due to infection. (The first one had also been removed because it was infected.) Isaiah now has a Baclofen pump, a trach, and is on continuous feeds into his small intestine. He's just re-learning how to sit up for brief periods, and he's incontinent. But he did just use the toilet the day before yesterday for the first time in 3 months, so we are making progress. He has also been putting on weight and actually looks normal for the first time since we've known him. We have nursing care 16 hours a day, but we are trying ot get it increased to 24 because of the level of care he requires. He gets meds 12 times a day, can't sit or move around on his own, and is on IV antibiotics for the infection. Even having a few hours a day without nursing care has been exhausting. We're starting to get into a groove, though, which is nice.

Joined: 05/05/04
Posts: 435

I'm so sorry that she's still having problems. I hope you can figure out what's going on. Sad

It must be nice to have him home again. My aunt (who had heart surgery) has found that rehab loves to send people back to the hospital. It must be the MO of rehab places.

We've been busy - Sam's done with gymnastics but playing just about every other sport known to mankind. Tom's a pretty good supportive brother but we don't bring him to too many games and stuff because it's just not fair to him. For a while she had sports 4 nights a week! Smile

They're both in swim lessons for a couple weeks here and there this summer and doing well.

As far as cleft stuff, Tom's having another tooth wiggled out this fall. He knows it's not a huge deal though so he's not stressed. The teeth above it (there are 2 where only one should be) are super crooked - like they'd be coming in at a 90 degree angle to how they should be. The idea is if we pull one now it might make one of the adult teeth come down and give the other one room to straighten out. Either way he's going to be in braces quite a bit but he knows that and accepts it. If nothing else, this kids rolls with the flow better than Sam Biggrin

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Glad to hear everyone is doing well. Sorry that GI issues are back... YAY for healthy weight gain!

Hope everyone has a great summer!

Joined: 11/28/06
Posts: 848

So, I write about how well Madi is doing and she wakes up yesterday morning wheezing and vomiting mucus. The vomiting got a little out of control but after a breathing treatment and some rest she was absolutely fine in a few hours. So strange how these attacks come on so suddenly.

And we got a new puppy last night! This is HUGE for our family because our kids have been complaining that they are the only children in the world without a pet, lol. And I'm so anal about things being clean and disinfected so I'm learning how to relax a little and love animals again (we had dogs before kids). Our new baby is a dorkie (dachshund/yorkie) and her name is Darla. Alana is still a little fearful of her (she's terrified of dogs even though she begged for one) but the girls have done a great job of taking care of her and I'm sure she'll be house trained in no time. If anyone has any puppy tips/advice I'd love to hear it! It has been 10 years or so since I've done this! lol

And Natalie - I've seen on FB how active Sam has been. That's great! Alana takes a tumbling class at a gym across town a few times a month. She really loves it but has decided to stick with dance for now. I think she's a bit afraid to step into the unknown when she knows she is good at what she does now. The class is great conditioning for her though. Those gymnasts work hard! And we can't wait to watch the gymnasts in the Olympics this Summer!

Joined: 05/05/04
Posts: 435

I wish our gym offered a tumbling class. She's sick of the beam more than anything, and didn't want to continue with it. She liked the tumbling she'd learned, but when that's just a small section she didn't learn as much as she probably could have Smile

I hope your kids adjust well to life with a dog. We're cat people Smile

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Tanya - Glad things seem to be going relatively okay. I do understand the diarrhea thing as we've dealt with it since Dakota was born. Sorry for Madi's setback though.

Deb - I too have been wondering but didn't want to pry. So huge thanks for the update on Isaiah as well. So glad you've been able to go home. Oddly enough, I've heard so many bad things about rehab places, but I had the opposite experience with the one my dad went to back in August.

Joined: 11/28/06
Posts: 848

Natalie - This is a super big gym that has a gymnastics team, tramp & tumbling team, competitive cheerleading team, and they also offer rec classes like tumbling on a pay by class basis. They have a 3 hour conditioning/tumbling workshop every Saturday that she wants to do but I think that is a bit much for her. She's super psyched that the gym has air conditioning now! lol She likes to fool around on the beam, and she's practiced jump roping on it as part of her tumbling class. What she really wants to do is climb the rope to the top of the gym and it irritates her when the younger kids can do it and she can't.

Deb - I'm glad that Isaiah is home now and I hope you are able to get the nursing care increased. I can't even imagine how hard it must be to care for him, but know that I'm praying for him and your family.