Tuesday, April 26, 2011

Yikes, I'm really not doing well with my blogging lately! 
Theres some changes to Amber but I've just been too busy to update! 

Amber has been pretty sick on and off since January. Some of this sickness her Dr's are thinking is the I-Cell progressing and the rest is just that her body has a hard time fighting off a simple cold. It's hard to really tell because her labs show (for about a year now) that she's fighting some "infection". From birth her body has not been great at regulating her temperature, usually she has random fevers or just a higher regular temp. Also, from birth she's had a lot of mucus/secretion/snot. So you see our predicament; it seems she's always sick so it's hard to tell when she's really sick. 

Not only has she been hit pretty hard this cold season when she's not fighting off something she's been having episodes of respiratory distress. Meaning when she's attached to her pulse-oxygen monitor her oxygen levels are dropping to bad numbers, to say it the easiest way. When this happens you can also see her get paler and working harder to breath.  Unfortunately this has been happening more frequently and it's getting harder to get her to recover. 
 We've been discussing this with all of her specialists. Unfortunately it seems that we're already doing everything that we can for her. We've added a prophylactic (meaning daily) antibiotic to her daily plethora of medications. It really made a difference she was really healthy and acted like a whole new baby! Unfortunately (word of the day) she's sick again. We've also added a nasal steroid that will hopefully reduce the size of her adenoids, they are thinking that might be the explanation of the random distress. Unfortunately (are you counting) she would need another sleep study to confirm this and like the MRI we wouldn't be able to do anything with the information from this test (it would be a surgical fix which is a no). 
The other stinky news is it seems like she's needing more oxygen to recover from times of distress and needing it for longer. Her pulmonologist believes that the oxygen might actually not be helping her anymore or not as much. It could also be a reaction to oxygen and some of the medicine she's on but we won't know more until she sees her cardiologist (May 2nd). The only fix she can have for this would be to play around or to add medicine.
Our other new news is Amber has been approved for 32 hours of nursing a week. Part of me feels like this is admitting defeat. I'm trying to convince myself that it's important (since we're seeing her get worse) to get someone in now to learn her baseline (how she is not sick) so they can help more effectively in assessing a situation when she gets really sick again or progresses more. They'll probably start within the month or so once we pick the person or company that we want to work with.

I think that's it. This Thursday Amber has a GI appointment and hopefully she'll be getting a new g-tube button. They're supposed to be changed every 3-6 months and she's had the same one for almost a year. We will not be keeping it as a memento let me tell you it's gross and starting to get stinky! 
Her cardiologist appointment is her last follow up and then we'll be on another break from Dr appointments until the fall! Of course then we start summer adventures, showers and wedding season! 
Maybe by next spring time we'll have some down time!

Tomorrow is Early Intervention not sure how it will go since Amber is sick but we'll be discussing her walker! And I think I'm officially done now!! I'm also waay to tired to re-read/fix this so sorry in advance for any grammatical errors or incoherent babbling! 

Thursday, April 21, 2011

Working On Wheels

Amber has been doing really well in her walker!

She's a pro at going backwards and turning sideways now! Her favorite thing is putting herself under the table.

We are still working on getting her to come forward.
 We've been trying all forms of bribery!! 
 She's also doesn't have lolly pops down yet.
 Once she gets it though....
 she loves them!
She has taken a few steps forward. Usually how it goes is, she gets really excited to move forward. Then confused about how to move so she ends up going backwards. Which makes her really happy so she goes running backwards until she gets stuck.
Along with lolly pops and cats we've bribed her with paper she can pull of the fridge and fridge/side of oven singing farm magnets. It's so cool to watch her discover more of her surroundings. I really love the visibility this walker gives her.

This is Amber's last week with the trial walker : /  Next week we'll discus the benefits of this one vs. her regular baby walker and also evaluate how she's doing in it. If it's decided that she'll be able to get one of her own I'm not sure how long the whole order/wait process will take.

Thursday, April 7, 2011

Amber's New Wheels!!

Yesterday Amber started her trial with a Rifton Mini Pacer Gait Trainer!
It's soo tiny!
 It took a lot of hands to get her all set up. 
From the left; Amber's early intervention therapist, me, my dad, the equipment vendor and Amber.
 Amber's taking a break here and we're learning about all the adjustments we can make.
 It took us almost an hour and a half to get her fitted right but once she was comfortable she loved it!
It has a ton of available adjustments which is perfect for Amber's strange shapes, you can't even tell one of her legs is shorter!
 It forces her to be in a standing position, something she's not totally used to.
Because of this it's going to be more work for her until she's used to it but she's already doing really well.
 It has a ton of "accessories" to help positioning. 
Amber is using the chest prompt, the hip positioner with pad and hand holds. Since this is the trial version it also has ankle prompts, hand loops and the guide bar attached (in previous pictures). 
 It's designed to grow with her and also change as she strengthens.
Everything can be removed so it can also be used as a regular push walker.
She really likes it and since the wheels can swivel and go sideways she's already able to move and go places she can't in her regular walker. Amber is still pretty much going backwards. The wheels have settings to change how easy/hard they roll and you can also put breaks/locks on so she can only move forward.

I took this video at the end of the day, so Amber's a little tired. She can move around with her body straight and her head upright. At this point she had just discovered that she could see the floor so she wouldn't look up at all. Sorry it's kind of long but you know how kids are as soon as I stopped videoing her she would move! I did miss her two tiny steps forward but I'm sure in no time she'll be all over the place!

We have the walker for about three weeks and then the therapist and us will have to decide how beneficial to her and her development it would be. 

Monday, April 4, 2011

The Ever Amazing Amber

Apparently Amber missed the memo that's she's not supposed to be able to do most things that "normal" babies do. In my last post I talked about how she had started sitting unassisted on our laps. I've seen other babies use a boppy to help them learn how to sit. So this morning I  thought I'd give it a try with Amber. 

Yes she's SITTING! Something we never thought she would do! This is her second try. At first she was really excited about throwing herself backwards but once she got over that she did really well! 

We also played around with sitting her on her squishy pillow with the boppy behind her.  In this position she can put some weight on her feet to help stabilize herself and hopefully reduce any pain she might have in her back (something we've had issues with before). She did really well in this setup too. 

On the floor she's forced to have her back straighter. We thought this would be more uncomfortable for her. Actually she seems to breath better this way and it seems that she can get her balance better too. She sat this way for a little over 20 minutes! The more she sat the better she was at it. She caught herself from falling back and was able to play with a few different toys. 

She loves it and did not want to take a break!!

I think this accomplishment and the fact that she's feeling/sleeping a lot better is the best way to start out our busy week:
Tuesday, we have a home visit with our PACT team (the palliative care people)
Wednesday, Amber starts her trial with her gait trainer (walker)!!! 
Friday, Amber has a 18 month Well-Baby visit/follow up to being sick

We're looking forward to a productive week!!!