Miss Amber: "I am not a baby"

Can you believe that our little Miss Amber is going to be 18 months on Friday!!!! 

I can't! 

Amber would like everyone to know that even though she looks like a little baby she is no baby!

When she's not feeling sick she is quite the energetic, busy bee!

She plays her own games and thinks everything is funny.

 Anything she can get her hands on she'll play peek-a-boo with, including her oxygen cord.

 She recognizes people in pictures (She's looking at a picture of her, Grammy and Pappy).

We're working on a new form of communication using pictures of her things. She's supposed to pick the picture of the thing she wants to get that item but right now she is more interested in playing with the pictures than playing with or using that item. 

She is getting so strong! She's sitting really well on the couch and on laps. Her body control when you're holding her has improved so much. We really don't have worry as much when we hold her. She can spend a long time in her jumper now and usually prefers to be more upright during the day. She is also doing really well in her walker. She is still only going backwards but can now turn herself to the side and rock back and forth in it. One night before she was sick she backed herself into the bathroom off our kitchen about three times and was very content to sit in there and talk to herself, it was so funny!

This is one of Amber's favorite things. A "taggy" blanket made by one of my cousins. 

Somehow she always manages to get that certain loop in her mouth. 

She loves to stuff a loop and a bunch of the blanket in her mouth and talk to us.

Her other new favorite toy is a baby bottle. She loves to feed her baby and this puppy.

 However Pooh Bear does not get a bottle. 

She makes the funnies "No mommy" face when I feed Pooh Bear this way or tell her to.

She still loves her "beads". Her fine motor skills are really coming along. 

When she first got this toy at Christmas she would hit the beads to move them or try to move them with her hand closed.

Now she grabs a bead, pulls it to the top and lets it fall.

Sometimes it takes a few tries but she's so happy when she does it right!

She finds humor in everything!

 She squeals and screams in happiness now, I have to get it on video because it is so adorable! 

Everyday she seems to be doing or saying something new, I can't seem to update quick enough!

Her speech is improving. She has so many sounds and "Amber words".

She really is more of a toddler than baby now. When I'm changing her diaper I'll ask her to lift her legs or put them down and she will! She knows where eyes, nose, mouth, feet and hands are on us, baby and herself. She just needs to learn "no" :)

She is moving on the floor more too! She can plant her feet and lift up her butt, which doesn't really move her too much but it's really cute! Her rolling back and forth, leg lifting and stretching is really impressive now too. 

What a difference between this year and last year!

Tomorrow we're in Boston for a follow up genetics appointment. Our break has ended and we'll following up with all the specialists this month and next.

Thanks for reading!

Do you know how hard it is to pick a video! It's much harder than trying to pick picture!

Today I think we'll go for the super chatty Amber one because (in my opinion) it's a pretty good depiction of how life around this house is right now. Full of baby chatter.

Other than a nurse visiting ever 28 days and her weekly Early Intervention visits Amber really doesn't have much going on. She has two visits this month, with a neurologist and her pediatrician but then she has off till March. I can hardly believe it myself!
With a lack of weekly appointments to cause schedule interruptions she's had a lot of free time to think about what she's doing with her life. And she's decided that she's going to spend every waking second telling us how she feels. She's also decided to work off some of her flab and build up some muscle. I have to say when this baby puts her mind to something she really can achieve quite a bit!
For muscle strength she is doing really well with supported sitting. She's well on her way to sitting on her own and I think she'd be closer if she wasn't so scared to fall over. Her muscle control is really come a long way, she can bend herself forward on purpose and pull herself back upright. I've already told you about the walker and jumperoo which is just amazing! We are so proud of everything that she is doing and trying to do, of course we're always proud of her no matter what she is or isn't doing!
She is also quite the conversationalist. It's much easier to show you in these videos than it is to try and figure out how to type baby speak. Because we're talking about it and because I love you all so much I'll try and see if blogger will let me add another video. Just so you can really see how talkative she it!

Isn't she a great mommy! 

I love how she's making the baby bang on it's head, that's something that she does to herself all the time. 

I hope you all enjoy the videos, I'm really sorry for my horrible grammar (can I still use the pain killer excuse?) and I hope you all have a wonderful weekend! 

Adventure Update 3 Early Intervention

 Early Intervention! What’s going on? Not much. Amber’s range of motion is getting so much better. She’s lifting her legs more and higher. She can’t quite grab her toes but it’s still a big improvement. She’s lifting her arms higher too. She can almost pull her bows out now. Her neck muscles are getting stronger. She does much better at stabilizing her head when she’s held. Her trunk is slowly, slowly, slowly coming along. She still becomes a puddle in her bouncy seat and car seat but it takes longer. She doesn’t slump as much and she can pull herself back up straight a few times before getting too tired. We’re working on supported sitting in a bean bag chair right now and it’s going pretty good!

 In case you were wondering her bean bag chair has a hedgehog face on it and little feet

She's also getting to be a champ at holding her own bottle!

We're In It For The Long Haul!

Yesterday we were all making this face. In last weeks weight conundrum I completely forgot to mention that yesterday was Amber's Early Intervention Re-evaluation.

Can you believe that she was this tiny when we started!

Its been six months and she's made so much progress. When she first became eligible she did not have a diagnosis that would keep her in the program for 3 years (the maximum time). This meant that every six months she would have to be re-evaluated to make sure she was still eligible to stay in the program. At the beginning of the evaluation yesterday I gave the development nurse a copy of Amber's last skeletal survey. At the top of it under Indication (amber's description) it says; 6 month old with microcephaly and multiple congenital anomalies. Apparently microcephaly is a diagnosis that will keep Amber in the program for the full 3 years! This means we don't have to worry about anymore evaluations or whether or not she'll stay in!

Side Not; microcephaly means small head, however all of Amber is small so technically her head is proportional to the rest of her body also, under skull it says "overall appearance of the skull is normal".

After they found out she has microcephaly and would be in for 3 years they didn't really need to do the evaluation but they went ahead and did it anyways just so we could figure out where she is right now. It went really well and she scored really high in some areas and not so well in others but better than I expected. I'll give you her scores now and kind of explain them. Keep in mind she is 7 1/2 months right now.

Cognition: 7 months so right on target!

Gross Motor: 3 months. This isn't great but its because of her low muscle tone, can't lift head or sit up

Social/Emotional: 9 months She didn't cry when we left the room, I think it was because she was comfortable with the lady that comes every week.

Speech/Language: for expressive language she is 5 months because she doesn't say consonants yet (its a muscle thing so its harder for her) For responsive she is 10 months old! She turns her head to her name, knows/responds to names of things example if you say wheres daddy she looks or finds daddy.

Fine Motor: 5 months. This isn't too bad I don't know what would have made her score higher. She can pass toys from hand to hand and pull a peg from a hole. She can't sit of her own so they held her in a sitting position to do the tasks. Since she's not used to this position it was harder for her to figure out than if she was in her usual side or back position. She did score higher than they expected.

Self Help: 5 months. She does the right mouth movements for eating but she doesn't want to hold a bottle and she's not super interested in feeding herself.

Overall (from my point) she's a genius! Well they were very impressed by her. The evaluation shows us that we need to keep on focusing on language, stretching and muscle strengthening. Even though its still a little bit early they want us to start working on self feeding. We found a great cup for her yesterday and now we're looking for some good utensils for her.

I didn't get any pictures but we tried the cup last night. Sometimes she gets that she's supposed to hold the handles but she'd much rather be feed. It's really hard for her based on her hand positioning and lack of upper body strength to get it in the right position.

I have even more exciting news! We found a new car seat yesterday!! It's upright and really big but hopefully she'll pass the challenge and be able to use it! Another surprise we're actually supposed to have her car seat challenge today. The baby ward doesn't want us (the poops!) but the Dr office said they could do it and then called back and said they couldn't....so we'll see what actually happens.

I think that's all for my exciting news!

We've been enjoying looking at these little toes all the time! It's finally cool and rainy today so its back to socks, pants and sweaters :(

I have a lot of things I need to do and update about but I promise I'll get to all this coming week!

Did She Just Do That?

This has been quite an eventful week and I'll admit I'm exhausted!

The most exciting news is that Amber is now starting to wave, clap and laugh! She does it in her own way so its easy to miss but she's really doing them!! Of course like any other baby she won't always do it when you want her too so I have yet to capture it on video to share with you all!!

Bear with me here I have a ton of information and events to tell you about. I should start doing updates more than just once a week when I have crazy weeks like this!

Monday ~ My mom left to go visit my dad. We headed to an appointment for me. Amber decided to show off and waved at my Dr! What a nice relaxing day :)

Tuesday ~ We headed to Amber's genetic appointment. It went really well! We had some very nice discussions with the geneticist and found out some interesting things. The results of her general metabolic and general genetic test came back. They are both normal! Its good but it makes things more complicated for her Dr's. The geneticist is now toying with the idea that it might be Juene Syndrome It seems like it would be a good explanation of Amber's chest shape, slight breathing problems and issues gaining weight. However its not a perfect fit. She has very long fingers, contracted fingers, osteopenia and pretty normal length arms and legs. Anyways our geneticist is sending us to her friend as Mass General for a second opinion.

Wednesday ~ The early intervention lady and developmental nurse came to visit Amber. It was a great session!! Amber was in the mood for showing off; talking, waving, clapping, imitating the works! By the way at her age she shouldn't really be imitating so they were very impressed! When they visit they do a mini neuro exam and she scored above average! For a fun experiment they want us to teach her some simple signs. As of right now she just thinks its really funny but won't do them. Her daddy did teach her the fist bump (in one day!) so maybe the signing will be his job.

Thursday ~ We had our first pulmonary appointment. This wasn't supposed to be until later in the month. We were really happy that they were able to see us sooner. Recently she has been choking a lot during and not during feeding, she also has episodes at night where she does her in pain cry randomly the developmental nurse and us think its possibly reflux, her soft pallet causing an obstruction or apnea. The pulmonologist right now wants to figure out why her chest is that shape. He said one reason could be Juene syndrome or something like that or because of her soft bone issue the diaphragm muscle could be pulling her chest walls in. It sounds bad but her pulse/oxygen levels at rest are ok and her pulse/oxygen levels during feeding go down lower than they should but its not low enough to cause any intervention or major concern at this point. He did order another full body x-ray and upright chest x-ray. I guess vitamin d makes the bones look different so they could have missed something last time and it will give them a better idea if her chest shape has actually become worse. Our geneticist check in on us while we were waiting and it sounds like she might go ahead and order a sleep and swallow study. The pulmonologist seems great but I'm not thrilled about his wait and see attitude. So after that loong afternoon at the dr's we came home to a dead water pump :( ugh so we packed up and slept at my grandparents for the night.

Friday ~ We were supposed to go to the endocrinologist but had to cancel to deal with the pump. Unfortunately we won't see him again until June, we're praying they can give us a cancellation like our pulmonary appointment. I made amber's mass gen. appointment! It wasn't supposed to be until July 2nd (!) but (thanks to her being famous and loved by all the geneticists in our region) we were moved up to March 19th!!!!!! Oh and my mom found a happy apple in with some old toys!!

Well that's our crazy week! I think this sums up how we all feel

yup she feel asleep while I was feeding her

(we finally got her a real highchair! it seems to work really well)

I think this runs in the family

He's such a cutie :)

Have a good weekend its supposed to be nice and warm here yaay!!!

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 can.....is 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

Showing off :)

I know I promised some holiday posting and yes it will be coming soon but we had such a good day today that I just had to share it!!!

Today our regular early intervention therapist came with a nurse who specializes in development to discuss some of Amber's setbacks and what the Dr's have told us so far. It was my turn to impress them first sharing my knowledge of medical terms, explaining her conditions and my super binder skills! Not to pump up my own ego but there is such a stigma associated with young parents that it was nice to finally have someone recognize that I actually know whats going on :)

Amber's turn was next she totally aced today's session! She did everything cognitively that she's supposed to be able to do right now. This is a recent accomplishment and it really wow'd the nurse and her therapist. She did great eye contact, turned her head to the side and up to look at me and her Grammpy, was being very vocal in a bunch of ranges and talking back and reacting to the talking around her! Her neck control is getting a lot better even in just a week! Her therapist even commented on the remarkable improvement she's had this week, even in her hands! I know its still going to take some time before she's all "fixed" but I'm so proud of her accomplishing so much already! Thanks again for all your prayers I really believe Amber couldn't have come so far without them!

Here are some pictures of Amber and her PA Grammy enjoying some time together!

I'm proud to say her face making ability is one of the few traits she got from me :)

An update!

Yikes time flies and so much is going on I just haven't found the time to get back on here!!

Soo I'll try and do this in bullets to make it as short as possible (if that possible!) and then do some fun pictures at the end b/c I just love to show off this cute peanut who is changing soo much!

* 10/26 & 11/11 Early Intervention Evaluation went well she's qualified! And we will be seeing them once a week for services and then in 6 months (4/11) we'll have another evaluation.

* 10/26 ~ 10/29 We visited my grandparents at their place in North Conway NH (where we stayed for our honeymoon!) and had a lot of fun taking Amber to Diana's bath and enjoying family and the outdoors

* 10/30 We had our Endocrinology appointment (a hormone Dr) who will be dealing exclusively with Amber's bone issues, the good news is this seems to be something that will be fixed over time!! YAAY We also found out her lack of vitamin D could be b/c I have a lack of vitamin D

* 10/31 Amber dressed up in a duck onesie from daddy and we went to my cousin's house to hand out candy and enjoy the warm Halloween night

* 11/10 We had the follow up appointment with Amber's geneticist. The good news is her chromosomes are completely fine! This rules out a few of the disorders they were looking at! The bad news is they are still concerned about other genetic disorders and she will have to have further testing done. The Dr still hasn't given us a good idea of what we might be dealing with b/c they still need to gather information on her. They also tested her for a rare metabolic disorder.

Upcoming Events for us, again I'm going to do the bullets b/c there is a lot going on!

*11/20

- Amber (again) and I will have our blood tested to check the levels of calcium, magnesium, phosphorus, vitamin D and the parathyroid

- Amber will have an ultrasound done on her soft spot to check her brain structure and she will also have an x-ray to check her entire skeletal structure

* 11/24 We have Amber's 2 month visit so we'll have another weigh in!!

*12/3

-We have a joint (no pun intended!) genetics and orthopedic appointment to discuss test results and discuss whats going on with her hands and hopefully get her hands splinted that day!!

- We will also have our follow up appointment with the endocrinologist that day. If her levels have gone down we'll be able to decrease her medication and if not she'll have to have a bone density test done.

At some point she will also be seeing a neurologist to determine why she is reluctant to lift/move her head, use her arms (especially the left one) and to discuss a few episodes where she becomes distant and non responsive.

Yep there is a lot going on!! But she's doing really well despite it all and we're doing a good job managing everything! We are so thankful of all the help and support we receive from our family, friends and Dr's, we are truly blessed!

Some Milestones She's Hit

* She is now 6 pounds 5 ounces!!

* She is eating a little over 3 ounces!!

*She is pretty much sleeping through the night!

* She is now smiling!! Her first smile was for daddy :)
And now here are some fun pictures!!

Happy Veterans day to all our service men and women! We are truly grateful for the hard sacrifices you all make to keep our country free! Love you and thanks Dad and Ian

Enjoying a Fall Day!!

Its been quite the week! But today we took a moment out of our crazy life to just enjoy a nice fall day. Daddy did some lawn work wile Mommy and Amber caught up with Auntie Allie :) and then Amber got to play in the leaves!! She wasn't too sure at first but I think she liked it (or at least the noise). We went to a pumpkin patch too and saw some giant bunnies!!

Monday-we had our first meeting with Early Intervention, it was a tad frustrating b/c the lady had no idea why she was there :/ and had no idea what camptodactyly was. We're praying that her evaluation this coming Tuesday will go better!

Wednesday- she had her one month appointment. It went really well, she weighed 5lbs 13.5 ounces (yaay almost 7 ounces in a week!) And she was 20 inches long (yaay her newborn outfits are now getting shorter!) The best news is 1) she didn't have to get any shots!! 2)we don't have to see the pediatrician for a WHOLE MONTH!!

Upcoming appointments- on the 27th she has her Early Intervention evaluation and the 30th she has an appointment with an endocrinologist (I'm guessing this means there was something up with her parathyroid levels, there is a serious lack of communication going on :/) and Nov. 10th a follow up with the geneticist (still no word on those tests :/)

I also got out twice this week!! And its amazing how God used both situations to remind me of His presence in our situation. The first was a Sunday night encouragement service. It was hard not to apply all the encouraging things everyone said to our situation. I was also very blessed by two lovely young women with their arrangement of the hymn "It is Well with My Soul". If your not familiar with the hymn or the powerful story behind it check it out: http://en.wikipedia.org/wiki/It_Is_Well_with_My_Soul

The second was Tuesday morning bible study, it was great and very encouraging to be around such godly women and learn from them!

In my search for something to encourage the man in my church and a dear teacher who has just been diagnosed with cancer I found two verses that have calmed the storm of worry I let brew during this time of waiting. "Wait for the Lord; be strong and take heart and wait for the Lord." Psalm 27:14 and "Be still and know that I am God" Psalm 46:10

It never ceases to amaze me how if we just open our eyes we'll see how God uses every situation to show us something or encourage us!

Thank you for all of your encouragement!! :)