Friday, February 26, 2010

Another Week (I'm at a loss for an exciting title!)

I don't know if I've mentioned it or not but Amber LOVES bath time now :) She tries to swim away from us and is all smiles! She only cries when we take her out now, it's so cute! 
"what do you mean I don't see well!" ~ yes it was surprising to all of us....I guess this explains why she makes lovey eyes, smiles and talks to lamps :)
Thursday was Amber's eye appointment. Her eye Dr was great and she did really well through the whole thing. The good news is she does not have any of the eye problems that are linked to Beals or Marfan syndrome! I think it will officially rule out both of the syndromes for her. This does mean we're back to square one. What they did find out is she's extremely farsighted. I guess all babies are borne somewhat farsighted and as they grow the eye elongates and they grow out of being farsighted. This could happen with her it might take longer because she is such a slow grower. The Dr made it sound like she'll probably have to have glasses (that will be interesting) I guess we'll find out when we go back in 4 months.

Holding her own bottle!!
This is from Valentine's day! She is starting to do a really good job of holding her own bottle, with no help from us or a burp cloth! You can see from the picture she still keeps that left hand in a fist but she'll open the right to hold it. She can open the left now! Not all the way but enough that she can grab and let go of her toys without us opening her hand for her! She still holds her thumbs in but she's been holding them out and using them more! This is AMAZING and after only 2 weeks of the splints!!

"mom I can't move my legs!"
She has a size 1-2 diaper on :) it funny to think that most babies her age are already in this size or bigger! It's almost time to move her out of newborn size diapers :( The size 1's are still big on her but the newborns are definitely starting to get to snug. Its such a bittersweet thing. I'm so happy she's getting bigger but I love her being so tiny!!

Our baby bunny
I'm not too sure if she liked this or not but I could resist snapping a shot of her in bunny ears! We had so much fun walking around the craft store the other day looking at all the pretty things. (she is easily distracted just like her mother!)
Unfortunately I don't have a good caption for this picture. Her face just cracks me up! I think she was very interested in her hands and didn't want her picture taken. The hubby says she's being "gangster"....I don't know. But she's got her boots on and she's already to go play in the snow! I guess you could say she's upset because I won't let her. Wednesday we got a ton of snow, it was up over my knees! Thursday we got a ton of rain, so most of the snow melted...and ended up in our cellar. And today we've had snow flurries and we've been told we won't see the sun till Tuesday. How sad. Amber and I are ready for some sun and warm weather so we can go play outside!!

I can hardly remember these days
(no I am NOT pining for a tiny one again!) I love to look back and see how far she's come! Yes she is small for her age but look how big she's now! Someone recently said to me "why would God give such a small problematic baby to young, first time parents it doesn't seem fair shouldn't those babies go to older parents who've had other babies?" My answer; because all we know is how to deal with a small baby, we have nothing to compare her too so she seems easy. I was never overly concerned about her until I found out it wasn't "normal" to have a baby like ours. God gives you what He knows you can handle. I think that's pretty great :)
I would also like to say Thank You! For the supportive comments and a much needed sermon and bible study lesson. I'm now back on track (more like refreshed) to where I need to be spiritually to take care of Amber and help her with the journey He has for her.

By the way next week we'll be seeing the geneticist on Tuesday and the endocrinologist on Friday.

Friday, February 19, 2010

Today Feels Like A Monday

Apparently we can never have a dull moment.
Wednesday we had a good early intervention session in the morning. Amber is really coming along with her head control and gross motor skills! We had two hours to feed and get ready and then it was off to hand therapy. Her splints are working great! We won't have to change them until she grows out of them. That should give us a month or so before we need to see them again. She is now wearing them for 2 hours on and 2 hours off all day long! She's doing so well with it that we can have her wear them for a little bit longer! Our goal is to get her to wear them for most of the night and eliminate day wearing. We also tried to have her blood taken that day. That was an epic fail! They didn't have the right stuff to do babies but they wouldn't let us just go to another place. So it took forever with poor baby crying and screaming and guess what! We have to go again because they couldn't get anything. I don't know why people can't admit to the fact that they can't help you and just send you to someone who it really that hard?
After our last appointment with our geneticist and hearing yet again that they have no idea what she has or what to do we decided that we would make the switch and go to Childrens. I called our Dr to let him know and switch our referral from a 2nd opinion to going there permanently and found out that our insurance won't pay for us to go there. Ugh I'm beyond frustrated at this point. So I guess we're going to try Mass General and if that doesn't work we'll try Tuffs or Shriners. I have heard that if Mass General can't help her that they'll admit it and send us somewhere that can (that would be amazing)!
Sorry to sound upset I'm really not just a little frustrated but I think I'm allowed to be. Some more good news; our tax money came in, people might actually buy our car and Amber doesn't seem to be getting constipated anymore!!
But really how could anyone stay upset for long when you're looking at this face all the time

Thursday, February 18, 2010

Valentine's Day Means

Hand Made Valentines
(yes I know its old but I'm a busy mom!!)
Here are the Valentines I made this year. They are all made from stuff I had lying around bits of old cards, stickers ribbon and some really old stamps. I think its a good way to clean out old/odds and ends in your crafting things.

I'm having some issues with blogger and photos so the inside of the card is before the outside.
I hope you all had a lovely valentine's day!!

Saturday, February 13, 2010


We have Splints!! It's only taken about 4 months but we got them on Wednesday!

Never in my life have I been more excited to bring Amber to the Dr.'s! Oh yes and we braved the elements...which turned out to be not that bad at all and we were taken early yay no waiting! The lady had even done a baby before; a one pound baby so miss beanie looked like a hippo to her :) It’s so nice to hear "you have a big baby!" Yes I would like to think that in munchkin land Amber is a giant. Well the first material just wouldn't do "she has such big hands"! Yes, we're thinking basketball or bassooning heehee. The next stuff worked fine and we now have "functional" splints for her giant baby hands :) Just so you can get an idea of the size here they are on a standard card sized envelope with a pen in front of them.

She really is a good sport about wearing them. Although at this point they are still interesting and confusing to have on. We'll see how it goes; she does seem to be in a little pain when we put them on for additional wear time and when we take them off. We’re working up to wearing them for 2 hours and having them off for 2 hours throughout the day.
The good thing is she can now chew/suck her thumb. She's never been able to properly do this before. The material is also pretty good for teething.

The bad news is it kind of hurts when she whacks you in the face with them

We are so happy with them! We've even begun to notice her hands being more "relaxed" for an hour after they've been off and it seems like she's getting more use of her thumbs! We go back this coming Wednesday to make sure they are still fitting properly. She will need new ones as she progresses and grows.
This is such an answer to prayer!

By the way any post that has to do with Amber's journey will be labeled Amber's Adventure. I'll be going back to label all our previous posts on her condition.

Friday, February 5, 2010


Did You Remember?
Did you happen to notice a lot of people wearing red today?
Today is Feb. 5th Nation Wear Red Day
A day to recognize heart disease in women

"Mothers, daughters, sisters, aunts — everyday women are dying at the rate of almost one per minute. Speak up. Make a difference. Show your support for the fight against heart disease in women by wearing red. It’s an easy, powerful way to raise awareness of cardiovascular disease and stroke. "
I found this quote HERE I think it sums up the day pretty well

Did you know?
Heart Disease is the No. 1 killer of women in the U.S.
It's a pretty scary fact! I'm sure (just like me) you are related to or have someone very close to you that has either died or is battling some sort of heart disease. Thats why I think its so important to raise awareness of this silent killer. By no means am I saying the other issues that women face are less important, I just think that heart disease sometimes falls into the shadows of other issues. I know in the wake of New Year's resolutions
and with Valentine's Day and beach days ahead of us (I know that one seems a stretch right now) the last thing you want to hear is someone talking about working out. But seriously exercising and eating healthy can really help reduce your risk of heart disease.
Did you miss it?
Thats ok! Grab your running shoes and a box of Cheerios because everyday should be a wear red day (no matter your age!!)

I wore red today and so did my mother unfortunately I did not get pictures. On that subject if you were wondering about my pictures heres the deal; I took the top one its my great grandmothers santa (aka creepy santa), the next two I found on the internet a long time ago so I don't have any references (that might not be the right word I'm drawing a blank), the last one I found a long time ago like the others but I edited on my computer

Thursday, February 4, 2010

Oh What A Week!!

This has been quite the week for us and its not even over yet!!
~ Was my dad's birthday! We got to video chat with him; put up a birthday banner, lite a candle in a cupcake and sing happy birthday, I'm not too sure what Amber thought but it was a lot of fun talking to him.
~ (these three days kind of melted into one we were having so much fun!) We headed off to PA! We got a later start than we wanted but Amber slept the whole way down so we made really good time!! I learned three new games! Amber had so much fun being the center of attention and playing with her aunties and grammy and pap (or pop ?) We left (dragging our feet) on Wednesday afternoon. We had to stop once (for an hour!) to feed the baby and didn't get home till 10!! It was such a nice trip and we all can't wait to go back again soon!!
~ What a blurr! Got up late but made it to our appointment on time! Amber had her hips x-rayed, they are maturing at a slow rate (this mean it could progress to hip dysplasia). The orthopedic did not recall talking about her radial heads ossifying and looked back into Amber's older x-rays and said that he misspoke and they are fine! That was frustrating but good to hear! He had to get up to the O.R. so he was less than helpful today, so not much news from him. The only really good thing we got out of him today is he's sending us to a Hand Specialist!!! We go next Wednesday and she'll have her finger splinted then (FINALLY!!!)!! We saw the geneticist today as well. Our visit with her was also really frustrating. She no longer thinks its Beals or Marfan syndrome. She said she could still test for them but that even people with more defining characteristics of the syndromes could have a false negative result. She had Amber's metabolic levels tested again because she is still concerned about her slow growth (her band-aide tape has hearts on it for valentine's day). She's also very concerned about her chest and thought that it looked worse than before, so now she's sending us to a pediatric pulmonary Dr. To avoid rambling on and on here I'll summarize our visit; she has no idea what's up with the peanut we're pretty much starting over or just saying "eh she looks kinda different, develops a little bit slower but that's just our Amber, because normal is a dryer setting"
~ remember its national wear red day!!! make a statement about fighting heart disease in women!!
~ Well there's not much left to it. Hopefully I'll be able to relax some, I have a few appointments to make and errands to run. My major thing that I'm dreading (like God please stop the sun type dread!) is Sunday I'll be playing my bassoon with the clarinet choir in the evening service. I haven't really played it for a year and I haven't been able to practice the piece much either, its going to be interesting!!