Monday, November 24, 2008

The pictures & video you have been waiting for!

This is my amazing Peanut! The one that had an 18 minute cardiac arrest once upon a time. The one that we were told "If she survives, it will be in a vegetative state". The one that has time and time again proved them WRONG! :)
She is in no way proficient at this new walker. She has collapsed completely a time or two, because there is no seat or straps. She has to stand up and support her weight her with hands/arms all on her own. And she DOES it!!
God is good. :)

Wednesday, November 19, 2008

An awesome site for kids with hearing aids

This is just a quick post, I saw this in Parents magazine and wanted to make sure other people saw it! Luckily my Peanut has no hearing problems so we don't need these, but how COOL are they!

It's been a while since I updated ...

Things here have just been plain busy! The fires in Southern California have been really close to us, so the air quality here has been horrid. It smells bad, and it makes your chest hurt to be out in it too long. So we are spending a lot of time indoors and bored.

My peanut is doing well overall! Tomorrow we are adding a new (soy) protein powder to her feeds, to see how she tolerates it. I am crossing my fingers and hoping for no reaction! She is truly doing the best she has with her feeds right now, not that "the best" is very good. LOL But she's sleeping a bit better at night, and while she is retching and choking and gagging, she's not throwing up. Please pray that adding the protein powder doesn't upset the boat!

In some big news, my Peanut is doing amazing in physical therapy! We are putting her in a reverse walker that has arm prompts and handles. She needs you to stay RIGHT by her, because she will just collapse when she's tired of standing. But when we stand there and blow bubbles and sing and dance and act truly goofy, she stands! And even better, yesterday she took steps ON HER OWN in it! Now those who know my Peanut know this is HUGE. She walks in a gait trainer, but that doesn't need her standing on her own. A reverse walker is a major improvement! It means she is standing, supporting herself with her arms/hands, and WALKING! This is awesome. She is nowhere near consistant or good at it, but she is trying so hard. My goal is for her to be walking in this, by herself and safely, within a year. How amazing would that be?? :) I took some video yesterday, so hopefully tomorrow I'll have time to unload my camera and post it.

In some not so great Peanut news, I have to call her teacher in the morning and raise a bit of hell. Yesterday when I got her off the bus after school, her diaper was so wet that it went through to her shorts. It isn't that big of a deal if it happens once, especially considering that her bus ride is almost an hour due to all the other drop-offs along the way. But then TODAY she came home, leaked through to her pants again! Two days in a row? Obviously they are not checking her diaper right before she leaves school. I wrote a note in her communication book for the teacher, but I am really pissed. She gets diaper rashes SO quickly! And to be blunt, NO ONE wants to sit in peed clothes! She can't tell you she's wet - you need to check her. She deserves that. I know the teacher will be apologetic and do her best to stop it from happening again, but it made me sad that it happened twice in a row. It's hard to send off these precious Peanuts to school, without us. But we trust that they take good care of them while we're not around!

My Monkey is doing awesome. He's so far ahead in school, that he is getting bored. His teacher is great though and continues to challenge him and give him extra work to do when he's done. It makes my heart happy to hear how much the other kids like him. He loves nothing more than to finish his work up, and then sit next to another student and help them with theirs. He's such a good soul! :)

Well, that's about it for now. Thanksgiving is coming up, and we are getting a menu and plans ready. It'll be a big, fun, yummy day!

I hope that you are all doing well in BlogLand!

Monday, November 10, 2008

Feeding update

It's been over a month since we've tried easing Peanut's GI problems by changing around her formula mixture. Because of her metabolic disorder, she has to be on a low-fat, high-protein diet. It's hard to make when she doesn't take anything by mouth, everything through the tube has to be measured exactly right.

We stopped her BeneProtein, and her Polycose, leaving her on just Neocate Infant. She was better GI-wise than she had been in ages! She started sleeping so much better through the night, and although she was still retching and gagging, she wasn't actually vomitting. The dietician had me slowly add the Polycose back in, because she needs those calories. She did fine for two weeks, still no vomitting and still sleeping better.

Then the dietician asked me to add back in the Beneprotein, so we could be SURE it was that. It is a whey protein, which is a dairy product. We added it for two nights to her mixture, and we had two hellish nights. She was up screaming and writhing around in her crib. She was retching and gagging and ... throwing up. So I stopped the Beneprotein last night.

At least we KNOW what the problem causer is now! The dietician is now trying to find a protein supplement that is dairy free.

I had this thought this weekend, that perhaps I should research blended diets. Wouldn't it make more sense to get a recipe that would include all the calories, fats, proteins, vitamins, etc .. .that Peanut needs? Then I could blend it up real good and put it through her feeding pump that way.

I am a bit scared to ask the dietician about it, afraid to sound like a wackjob. LOL I think I will ask her when she calls me back. The worst she could say is "No, I don't recommend it".

Do any of you use a blended diet for your tube-fed kids, instead of formula??

Tuesday, November 4, 2008

Apparently God was listening ...

We have been desperate to make ends meet financially lately. It's pathetic, really. We had to stop taking Peanut to her horseback therapy. She needs a bed, but we couldn't afford one. I have huge medical bills from my surgeries this summer, which are being sent to collections. We were going to have a very frugal and simple Christmas this year.

I screamed at my husband, I cried in the shower. I literally sunk to my knees and prayed. I don't pray. I am not a very religious person at all. I do however believe in prayer and miracles, but I cannot remember the last time I really truly prayed.

I simply prayed for peace in our house. We just need to be "okay", so that my husband and I could stop arguing and everything could be happy again.

Then I got a call from Peanut's school. They just had their huge annual gala. I bought ONE raffle ticket only, because they were $10 each. And with that one ticket - I won the GRAND PRIZE. $5000! FIVE THOUSAND DOLLARS!!

Oh my gosh ... I was literally in tears when I drove over to sign for it. My peanut will get the bed she needs, my monkey will get a good Christmas after all. And we will DEFINATELY be donating a ton of toys and such to Toys for Tots this year. :)

Sunday, November 2, 2008

Koda, AKA "Big Fat Doggy"

Our older dog is 9 years old, she's a mixed husky/beagle. She is furry and adorable. She also has a large tumor coming out of her girly bits. She goes first thing Monday morning for surgery to have it removed and biopsied. The veterinarian is cautious when talking to me, he says she's old and it looks "involved".

Please keep Koda Bear in your thoughts Monday!