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! 

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.

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. 

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!!!

This Is Where I Woo You With Pictures Cause I Don't Have A Lot To Say....

First of all sorry for the general lack of posting but...

 the peanut is sick again.

 It seems like just a cold but the congestion is really getting to her.

 She's needed to be held most nights just so she can breath right. 

So you can imagine how tired I am!

She is quite the amazing child...

 Even though she's been so sick she's taught herself how to sit on a lap with no help!

 She's really happy about trust me!

Amber saw her neuromuscular neurologist this past week. They agreed she has been doing really well for being so sick and recommended she get more PT. As much as everyday (yikes) or as little as twice a week. They also want her to get into an aqua therapy program and a hippo therapy (horses) program. 

I've looked into a few places. So, this week and next we'll be talking about it more with her pedi and EI person and hopefully making some decisions about it. I'm also praying since she grew that half inch we can get  her walker!! 

Amber's new trick is, if you hold her while you're eating she steals your food.

 This is new favorite thing to steal.

 Yup that's mushy half of Peep.

She doesn't really eat it eat it but more sucks on it till it's really gross. 

 We've also been doing a lot of spring cleaning around here!

 We rearranged the living room and all the baby stuff has ended up here : )

Amber's toys are now in the bottom two shelves and a basket next to the book shelf. Her books are now on the shelf she's laying on in the picture. I also did some major cleaning in her bedroom! It was really sad going through all of her clothing. Her preemie clothes used to be so big to me and now they're unbelievable tiny, especially the socks!! I don't have any pics of her room I need to make her some curtains and then I'll finally have some finished nursery pictures to show you all! (It's only taken me a year and a half) 

This is something else that's on my "To Do" list;

 take some nice pictures of Amber in all of her beautiful dresses! Oh and get her another hair cut!

I think that's all!

This is how she keeps tabs on all of us

Amber Out And About!

 First of all I have to say,

 Amber loves to go anywhere.

She gets so excited when we put her in her car seat. 

She even tries to strap herself in, it's so cute!

She loved the "fort" I made her too.

Yesterday my parents and I took Amber to the 2011 Boston Flower and Garden Show.

It was so much fun! The theme this year was container gardening. Every display had to have some sort of container in it. Some were made entirely of containers and some had a few containers here and there. Most of them took to the challenge and used very nontraditional containers such as half an egg shell, a skull or a drilled hole in a rock, just for some examples. Others dressed up the traditional window box or pot. No one disappointed! 

 Amber had so much fun looking at everything!

 I really liked this moss lady!

 The Blue Hill display had a little owl. Amber loved it!

 They also had amateur competition through different garden clubs.

This one in particular was butterflies made completely of plant matter.

 There were lots of cool fountains, rock formations, ponds and any type of garden you could make!

 Above and below are part of our favorite display made by the Newport Garden Show.

They had a table setting, chandeliers and this lady all completely made of plant matter and the detail on them was amazing. She had earrings, buttons down the back of her dress and a train! 

There was so much to look at we really enjoyed ourselves! 

For more of my pictures you can look Here

Starting Spring Right!

We're doing things right and starting off this spring in good health. Yes, Amber is finally 100% back to her normal self! 

Yesterday's Genetics follow up went really well. Amber was in good spirits and other than her gum over growth nothing else has changed! Yay!! She had her usual blood work done to check the levels of her iron, potassium, white blood cells, electrolytes and some other things. Her last couple of results have been pretty out of whack and we think that might have been some of the reason why she had been so sick. Thankfully the results of yesterday came back showing almost everything has started to come back to normal levels! Amber weighed less this visit (but she's been sick) and she's grown half an inch! Which we're really excited about because she should be able to get her walker now!

The other awesome thing about yesterday was being able to meet with another I-Cell mom!!

She has twin boys with I-Cell and we met through a Facebook support group. She doesn't live in our area but was doing some work up here and we couldn't pass up the chance to meet her! It was so nice to be able to chat with another mom who's going through the same things as us. Someday I'd love to have Amber and boys meet, I think they would have so much fun together! She has a blog too HERE, the boys are sooo cute!!

We had a GORGEOUS day here today!! Nice warm weather, in the 60's. Amber was able to enjoy some fresh air. She loves to be outside and thought it was really funny that her cat Boo could come out too! 

Amber also got to touch snow for the first time today! I know, it's weird to think about, it was warm but we still have snow in most places. We're looking forward to more warm weather these next days!!

Amber wanted to wish you all a Happy St. Patrick's Day! 

(this was supposed to be posted sooner)