Having a Great Week

Anya has been amazingly well the past week. It seems like a couple days after receiving CoQ-10 her eye contact has been much improved. She's been able to track objects and fixate or focus on objects for a period of time. She has also been smiling alot and even giggling. Prior to this past week Anya has only giggled perhaps twice in her life, and those were very brief moments. This has been so awesome to see. Whether or not its the CoQ-10 enzyme doing it is unknown.

We've upped her dosage of Topamax to 18mg/day but still no change in her chorea (movements). She did also vomit her entire feeding on Monday morning but nothing since.. Her sleep has been great; through the night (pretty much) and taking an hour or two nap each day.

We've started to re-introduce a bottle again w/ thickened water. She really seemed to have lost her suck during that most recent spell of being sick. She's doing ok with it but has definitely regressed. She maybe swallows 5-8cc /day (about 1/4oz).

Monday

Hope everyone had a nice Thanksgiving. We had a great turkey day! Brian and Sandy (my in-laws) were here, which made it extra special. The kids love to see their nana's and papa's. Anya has been WONDERFUL. She has been so much fun. She's been smiling and giggling so much in the last couple days! We started giving her COQ10 and have seen some improvements. The OT came today and thought Anya looked a lot different, in a good way. We will be starting PT work soon to work on some of the gross motor skills Anya can't do (ie head control, rolling over...) We're going to Special Cares Clinic at Children's' today and may find out more results of blood work that has been taken.

Have a good Monday!

Good Mornin'

Yay! Anya finally fell asleep last night around 7:00 and slept through the night. That's great! Pete and I were able to get some much needed sleep. Today she is really mucousy, not sure if that's a word but.... you get what I'm saying :) I don't know why she produces so much mucous. Her body is def. trying to tell me something. I'm sure I'll learn the reason for it soon there has to be an explanation for it. Our friend Mindy (she has a daughter with Mito in WI) suggested melatonin for the nights Anya has trouble sleeping. Makes sense to me, I am going to ask the doctor tomorrow when we go in for her check up. Thanks Mindy for the info. Well that is it for now. After being couped up in the house yesterday we need to get outside. I need fresh air. Maybe we'll bring Anders and Aksel to the park, that sounds good........... Have a great Sunday.

Another Sleepless night

Good Morning! Anya had another sleepless night. She's been very agitated all night. Her movements get really bad when she's tired but because of her movements she can't calm herself and sleep. This movement disorder (chorea) is so unfair. She looks so frustrated with her arms and legs flailing around. I can't imagine what it must be like to be trapped in a body that doesn't settle. Yesterday, she took a 3 hour nap, which is great but I had a feeling we would be up all night. Ugh! We'll see what today brings us. Hopefully she can calm her movements and get some rest. She is on topamax for her movements but I don't think it is working, we may have to up her dosage. Who knows, this is all one puzzle..........

Happy Thanksgiving

Anya has been having a good day so far. She actually just took a 2 hour nap, which never happens! That's so good for her, she has a lot of sleep to make-up for. Last night Nana Gumness was telling Anya a story and Anya actually started giggling. She GIGGLED, that is huge!!! I haven't seen her giggle in a couple months. That made our day. We have learned to appreciate every little thing Anya does. We are so grateful for those smiles and giggles.

Today is Thanksgiving and I am so thankful for so many things. I am thankful for all of you! The love, support and prayers you have given us through these last couple of months has been amazing. I feel so fortunate to have such wonderful friends and family. Our family is truly blessed. Thank You.

Anya is finally holding food down

Well, Anya is finally holding food down. She hasn't gotten sick since yesterday morning. I was really getting concerned she has been sick since last Tuesday. She is taking pedialyte and formula. Hopefully today we will be able to give her just formula and she will tolerate it. We went to the doc. yesterday and she has lost a 1 lb. She now weighs 11.11oz. She really needs to gain some weight. The Holidays are coming up, everyone gains weight around this time, right? Although, it's hard to stuff turkey down her G-Tub, oh well.

Happy Thanksgiving!

Not so good today...

Another set back today. Anya again has been vomiting all day. We tried going back to a formula she had been on previously with out problems earlier in the day but still can't hold anything down... poor girl.. She's back on Pedialyte again but we added a multivitamin to offer a little more nutrition.

On a good note, we got her Neurologist Report faxed to us today and she is now officially diagnosed as "a pretty baby"... we knew it!

It's been a really good day!

Anya slept great last night, granted it was mildly prescribed drug induced, but still she needed sleep. She actually looked tired at around 10:30 so we put her down and she fell asleep on her own for a nap (that is very rare fro her) and slept until 2:30 when i woke her. Since then her eye contact has been great, she smiled again and still no vomiting through two whole feedings of regular formula. Today is a good day...

Got another smile!

Anya slept GREAT last night! She slept from 5:30 until 10pm, was up for an hour and then slept until 8am. She is still on pedialyte only and hasn't vomited any significant volumes since yesterday afternoon. She is sitting in her theory chair right now to help work on strengthening her neck muscles and she just gave Mom a little smile. First smile in five days...

11/16

Anya was vomiting A LOT the last 4 days. We started feeding only taking pedialite to keep her hydrated at around 10am and at around 1:00pm she has been looking good! Good eye contact (for her), not vomiting, seemingly content. Ups and downs...

Sleepless night

Long day of vomiting isn't enough to wear her out. Anya was pretty lathargic most of the day. Fell asleep around 8pm and woke up with a lot of gas vented through her g-tube at around 11. She been wide awake since. Not taking bottle, nuk, finger, or holding. She bites pretty hard on finger. Is grunting and moving a lot.