Hello My Name Is: Zombie Mom

So I had planned on updating about Amber's orthopedics appointment the day it happened (Tues.) and I really had no excuse since it was such a short and to the point visit. However I decided to take an epic nap and go to bed early instead.
I had also planned on doing a "girly" Wordless Wednesday for today but I decided to take another nap....and I will probably go to bed early again so hopefully I get this out before....next year!
I did muster up enough energy to make a very delicious meal that I'll blog about tomorrow. I'm also going to apologize ahead if parts don't make sense!

So let me start off by saying Amber has been doing really well this month. She's getting a lot stronger and finally starting to build up some muscles. Her glasses seem to be motivating her to do more movement and stay in more challenging positions longer.

Our orthopedics appointment was at 8:30 and you're supposed to be there at least 45 min. early to get your x-rays done. This meant we had to leave our house at 5 am to beat heavy traffic, we get there really early but it's better than being really stinking late. We sign in at 8 and they tell us she doesn't need x-rays today, ugh we had checked two weeks before and they said she did. But I'm glad because this baby has had more than her share of x-rays. So we waited the half hour in the waiting room. Amber had breakfast, played with her little puppy, talked to daddy and watched Curious George.
They put us in a room, weighed her (13lbs with all her clothes on) took a temp but forgot to do length (poor new guy). The Dr. came in right away in a really good mood, an answer to prayer because they took forever last time and he was really grumpy! He looked her over commented on how her hips were doing great and he could really tell she was getting a lot stronger. He approved her for a stander, a walker and said she should do well with them but might need some orthopedic supports because she's so extra flexible. Then we were sent on our way! Unless there is some unforeseen problem we won't be seeing him for another 6+ months!

As for equipment for Amber it's going to be tough. She's only 23 inches long and hasn't grown in length since she was 5 months old. There is really great equipment out there but it's made for bigger kids so it's going to take a lot of looking, work and nagging to find the right stuff. Right now we're looking into modifying a regular baby walker. Once she's developed a little more and seems more motivated to really walk we'll move on to a walker/gait trainer type thing although I think with the support she needs these would be better. The other thing we're looking into is a prone stander. The prone stander would be really great for her because her breathing is really compromised when she's sitting, not quite ready to bear a lot of weight on her legs but still wants to up in a more upright position.

On the 19th we have an appointment with her pulmonary specialists and a follow up with cardiology. I'm really not looking forward to cardiology because we haven't made any decision about doing surgery or not.

Sorry about the lack of pictures I've haven't had a chance to get any new ones uploaded so here's an oldie but a goody! I miss that outfit : /

Adventure Update 2 Appointments

On Tuesday (the 10^th) we went into Boston for a C.C.S. follow up and an appointment with a new orthopedic surgeon. It was a long trip for not a lot of information.

C.C.S went really well again. Amber weighed in at 11lbs 13oz and measured 24inches!!! This was nice weight gain that we weren’t expecting since we reduced the time she’s on her feeding pump and since she’s not taking her total required oral feeds. Don’t even get me started the length! It seems like a miracle. I think it’s been almost 5 months since she grew and never a whole inch at once! We went over all of Amber’s problem areas and since there was nothing new there wasn’t anything to discuss. They told us we still have referrals/requests in for the new specialists and test for the fall but no dates yet. They did have some test results though. Her vitamin D is up a little bit, this is great news! Her blood gas is getting better, meaning oxygen weaning is going to happen soon and will be easier! They also had our sleep study results. Apparently the only good thing they did was get the results in fast. The study showed (big surprise!) she still needs oxygen but, other than that they didn’t find anything. It concerns me a little bit because she really didn’t have a normal/usual night so I really hope they didn’t miss something. C.C.S. did call me today to tell me that they spoke to Amber’s pulmonary specialist who said that we could turn Amber down to 1/4^th liter of oxygen during the day but to keep her at the ½ at night.

Our other appointment was with a new orthopedic surgeon. They had communication issues so we didn’t really get great information from them. They did x-rays of Amber’s hips that showed both her leg bones are finally in the sockets right. The only other comment on her hips was that “they’re definitely funny shaped” but nothing about if it would be a problem, the two leg lengths or about the ossification issue. He wrote her a prescription for new hand splints and thankfully we can go back to the lady who did her first ones! He told us her back is fine (there were previous discussions of scoliosis) and her chest shaped is caused by deformed ribs (duh) and not a problem with how they’re attach to her spine. He looked at her chest, previous chest x-rays and pictures of it before she got the nice layer of chub and actually discussed fixing it! It would probably be with spacer type things so she needs to be bigger before she can have it done but on the other hand they don’t want to wait too long in case she gets sick or has more breathing problems. He’ll be able to tell us more once he’s talked to Amber’s pulmonary specialist and his colleague who deals with Jeune babies/lateral chest expansion surgeries (who we’ve actually seen off the records in a genetics appointment and love!).

She's such a goof! She loves to wear these glasses!

Getting to normal

On Friday we went to Boston...again. This time we saw our nutritionist, who we love! She is the sweetest lady. She is also a mom. So she completely understands all of our concerns with Amber suddenly not getting the oral feedings she used to have and the stress of being on the g-tube for almost a whole day (and the fact that we know our baby best!).  She gave us some awesome news!! Amber is gaining 3 times as much as they expected her to! She is now a whopping 10 lbs 14 ounces! She is looking rather chubby! The worrisome part is she is still 23 inches long, she has not gained any inches in almost 5 months. Back to good news, because Amber is doing so well she now needs to be cut back on her feeding. Everything she gets is still 26 calories. She is still getting 24 ml per hour but now it is only for 16 hours! We now have 8 hours off!! She is now getting 3 ounces by mouth every 3-4 hours as well. We're hoping she does well on this so we can move her to being on the g-tube for 12 hours and take 4 ounces every 3-4 hours.

This Wednesday we'll be in Boston again to see Complex Care Services aka C.C.S. I'm really hoping for a lot from them and I hope it doesn't blow up in my face. I'm hoping they let Amber get back to eating solids. They can explain the mystery of her mouth (still no teeth), find someone to help her chest and just overall get us plug into more people who can really help her. I've heard great things about them but after all the struggles over feedings we've had with them I'm really skeptical. 

I'm not sure where I was going with the rest of this post so I'm going to go to bed :) 

The cat has not been shaved......yet 

Grow BABY!

My daily lessons on patience and contentment are slowly paying off. Things are finally growing around here. Thanks to a job change our savings our growing (not that we are even really thinking about that anymore!). Thanks to better weather, a wonderful husband and sprinklers my vegetable garden is growing! I had given up on it but now it looks like we will at least have cucumbers and maybe a yellow thing. The best thing that's finally growing is AMBER!!! She's finally a little over 10 pounds! That's a whole pound in a little over a week. Before that would have taken her a month at best usually a month and a half if not two. Its so great to see her getting bigger but now we just have to wait for her muscle to strengthen, and that will make us even happier!

Her surgical follow up last Friday went perfectly! She'll be monitored every once and a while to make sure nothing is going wrong. As of right now we are in the clear meaning if anything bad in terms of infection and such would have already happened. Her diaphragm is still healing and like any muscle it will take some time for it to strengthen and then we'll be able to better tell how much the surgery helped her. This is also the reason it will take a little bit longer before we go back to weaning her off the oxygen.

This Friday we'll be back at Children's for her nutrition visit. Our hope is that since she's been doing so well with the amount of calories she's been having that they can keep the calorie amount but shorten how long she's hooked up to the pump. We would love to have more time with her off the pump, it's very stressful to go anywhere when she's on it.

I'm praying things will continue to look up!

Keeping Cool

It's been crazy hot here all week long! So here are some things Amber's been doing;

Wearing cute, tiny summer outfits

 Playing inside in the air conditioning!

 And chewing on ice cold teething toys!

She needs one for each hand!

We have some very exciting news! Yesterday Amber weighed 10lbs 9oz on the visiting nurses scale! That's 9 ounces in 5 days!! I'm not sure how accurate her scale is in comparison the the ones at Children's. According to hers Amber gained 14 ounces in the two days she was home from the hospital last week. I'll see how off it is tomorrow when she's weighed at her appointment. 

Our other news is that as of yesterday Amber has a very red, swollen looking part on her gums. If you're looking at her it's on the bottom, left corner where the canine would be. It's hard to tell what's going on because Amber has a very odd shaped mouth and her gums are actually teeth shaped. The Dr's really haven't been able to tell us much about her mouth because she can't open it very wide to get a good look and she gags really really easily when they try to "help" open it more. We'll see what happens, it makes sense that she might be teething based on how grumpy she's been lately.  The odd thing is she has another spot that looks like impetigo again (same place as always) but it lines up perfectly with the spot on her gum so it might just be that she hurt herself with a toy or the plastic part of her binky. 

Recipe For A Chubby Baby

I obviously don't have one, do you?

I do know how to make myself chubby though.

I've been eating tons of these (yes I finally made them!!)

They're amazing and easy and I'll tell you how to make them next post {I promise}!!

I'm sure you're all dying to know how our endocrinology appointment went. I love this Dr, he makes us drive an hour to tell us something he could have said over the phone. UGH! I have foggy brain {again} so I'm going to split this in two and tell you everything about her levels first and then the beginning of our appointment that didn't have to do with Dr {but probably should have}

I case you're not sure whats going on {I don't blame you she has a lot going on} the endocrinologist is a Dr that deals with hormones. In Amber's case he is monitoring/treating her rickets/vitamin D deficiency. The normal range of Vitamin D in all people should be between 30-100 depending on age and size. When Amber was first tested in October her level was 10. After being treated with a high level of Vitamin D and Calcium she was re-tested in December. Her level shot up to 204! At that point he took her off all medication. In January her levels dropped to 78. At our appointment yesterday we found out the results of her February testing. Its now 38. So when does she have her levels tested again....NOVEMBER! To me that's a big drop in one month and it seems crazy to go 9 months without testing her. His reasoning is that she should be at 30-32 and that she'll be getting some Vitamin D in the sunny months. I'm just praying that she doesn't go back to a 10 :(

Lets take a break and look at how adorable she is and take a poll;

Is this picture cute or kind of creepy?

I'm not sure

Back to the appointment! Amber has not been weighed since the beginning of March! We've been dying to know how much she weighs now since she's eating cereal, fruits and vegetables! At her last appointment she weighed 8lbs 10oz {at 5 months} Yesterday at 7 months she weighed 8lbs 13oz! I was shocked that's 3 ounces in almost two months! Usually she gains around a half a pound a month. I'm glad that she gained something but I'm worried that all or at least some of the 3 ounces is because she's constipated again.

The other part of this that upsets me is that Dr Endo. didn't say anything about it. He can look in his system and see what she weighed at her last couple appointments, what the other Dr's wrote about her and look at her x-rays but he never does! At least her main geneticist looks at everything so hopefully if she sees something is off she'll look into it.

Now for something more cheerful!

Amber is in love with this toy. It's called Sofie the Giraffe, She's soft rubber with a squeaker inside perfect for teething! When she first got this toy she loved to look at the face but couldn't hold it very well. Now that her hands are getting better she can grab at it and put it in her mouth by herself! Its so cute to watch her {yes she is still rocking her Christmas p.j.s}

Monday I'll be calling the pedi. because we still don't have a date for Amber to be retested for the car seat challenge and I want to let him know about the weird weight thing.

Hope you are all having a wonderful weekend! It's nice and hot here....that means naked baby legs!!

A quick update

Yes she is getting tubby!

Sorry to keep you all in the dark but Amber has not been sleeping lately and I haven't had the brain power to share any updates!

Our surgery consult went really well. The surgeon sees more diaphragmatic hernias in a day than most people see in a year, so he really knows his stuff. He told us there are two types and she has the less severe type. Amber's is coming up right under her breast bone (sternum) and going over the heart. It sounds horrible but he said the heart unlike the lungs is a strong organ that doesn't mind having the bowels in front of it. The best news from the visit is that Amber (at least for now) will not have to have surgery. He would like to wait and find out what is going on with her genetically because he is not convinced that fixing her hernia will fix her weight/growth problem. I'm completely fine with this, I'd rather her not have the surgery if she doesn't really need it. When we were in the waiting room there was a 7 month old boy the same size as Amber (he was a little shorter than her) but it was so nice to see another baby like her!

We also saw another geneticist Friday, at Children's. Yes she makes number 3! She and a specialist looked at Amber. They were really convinced she had a syndrome similar to Beals and Marfan but she is still not a fit for this one either. They were just as confused with her as everyone else has been. They took a whole bunch of blood to test for some more things but we won't hear any results for at least 6 weeks. We'll be seeing them again but we're not sure when. We still haven't heard any results from her skeletal scan, we probably won't until the 1st of April. It could either give us a positive or rule out Juene Syndrome and possibly some other things.

Today was Amber's 6 month appointment. It went pretty well she is 8lbs 10oz and 23 inches!! She is getting soo big! She officially does not fit her car bed anymore, this is great but she has a hard time breathing in her upright car seat. The Dr is trying to get us in to have her take the car seat challenge again. It's really uncharted territory, usually when a preemie who needs a car bed reaches the time they would have been born they are transitioned into an upright car seat and they do not need to take another car seat challenge. It will be really weird to have her in with newborns. Our other exciting news is we're supposed to start her on veggies! I'm not sure how I feel about it. If it helps her sleeping that would be great but if its going to make her choking worse I'm not excited about it.

I'm really sorry if this doesn't make sense Amber has been hardly sleeping. She will do 1 1/2 hour to 2 hour stretches at the most but she's getting up at 1am and not going back to sleep till 6 or later and not napping. The two of us were able to nap for almost 4 hours today but she got three vaccines so she probably won't sleep through the night. The poor thing you can't even brush her leg without her screaming.

We'll I'm off to bed praying Amber sleeps tonight, our warm weather comes back and we can get back to walking!

What a big baby!

Amber is now 7lbs and 13oz!! Its crazy to think that at 4 months she's the size of a newborn! She's is 22 inches now too (I think she's about the same size her daddy was when he was born!)

She is making so much progress physically with Early Intervention and is becoming such a chatterbox too!

At our appointment on Thursday we were told that the geneticist is pretty certain that she has Beals Syndrome. So this Wednesday we are seeing the cardiologist and we're making an appointment to see an eye Dr. This makes a total of 6 Drs we are seeing for her! We'll see how our appointments go the beginning of Feb. but I really think we'll be going to Children's for a second opinion (I just really don't feel like its Beals).

We've started cereal! The only problem we've had is she likes to talk to us while she eats it and then ends up choking. But other than that she seems to like it. I have some videos of her eating it but I can't seem to get them up.

My mom comes home on Tuesday and I can't wait to have her back. We've survived but it gets lonely here without her. Amber's also gone back to sleeping through the night and napping!! I'll try to post some videos and pictures later but its time to feed the little monster again!!

Happy New Year?

It's been kind of a bitter sweet start to the year for us. Christmas was wonderful it was so nice to spend time with my family and have my dad and brother home. Here's Amber in her Christmas jammies giving her Christmas doll a hug! I'm not sure if she meant to do this or not. She did it a few times before she started eating the dolls arm :)

Good News: Amber is showing a lot of progress. She is using and opening her hands more, I even saw her open her thumb up to grab at a toy!! Her head control is way better. She is well on her way to supporting it herself! Her neurology appointment went really well. The Dr said that she had no reason to believe any of Amber's delays were brain related and she thinks the seizure like episodes she was having were due to bad acid reflux (sounds really weird but apparently that can affect the brain stem) She had her blood level re-tested (she's been off her meds for a month now) and the levels are normal! She'll have them tested again in February and we'll have more x-rays then too.

The Not So Great News: At her last appointment she was only 7 pounds :/ its not a great weight gain and I really thought she would be closer to 8 by now. Her 3 month well baby appointment is next week so hopefully she's gained more weight. My hope is that once she starts on solids she'll gain more and gain steadily.

She is becoming such a smiley girl and so talkative too! Here she is checking out her hands.

We spent a lot of last year preparing for this day but its not really something you can prepare for. Second time around and its still just as hard. We'll spend all of this year waiting for him to come home. At the same time we'll be missing my brother who deploys any day now. We did get to spend a lot of time with them before they left and had a lot of fun together.
It does seem like everyone is leaving. My grandparents, aunt and mom are all in Florida. Its very weird and quite here :/ at least I've still got my hubby here!! Well I'm not completely abandoned we still have family and friends helping out but there's nothing like a mother.

On A Lighter Note!! Are you wondering what happened to that to the gingerbread house?

It's hard to see but here's its fate:
It's being eaten! The fluffy culprit is Jada. She's not the only one Mr. Pickles has been helping eat it too. All the coconut snow is gone! Who would have thought cats would eat something like this!

Hope you all had a wonderful Christmas and a blessed New Year!

Christmas is Coming

And Amber's getting fat! Well not really but she's about 7 pounds now. Its more like and the momma is very busy! I've taken all our Christmas pictures, finished Christmas shopping, made tags for the presents, made a gingerbread house and sent Christmas cards! Now all I have left to do is wrap presents (that's today's goal) and do some more baking!

Wednesday night I was up till 12am making the pieces for the gingerbread house and yesterday my cousin's wife and I attempted to make the houses. HOLY CAT FIGHT is that hard!! My shapes weren't exactly straight (this is very important lol) and the frosting wasn't getting hard enough (we were too close to the heater lol). It was frustrating but we had a lot of fun, and were very entertaining to everyone watching. My cousins house was beautifully decorated but sadly fell apart before I got any pictures of it. I was so done with the whole thing that I kind of just slapped some things on it to be finished lol. Here it is.

the other side the hearts are actually in some kind of a pattern

I spent this morning making tags for our presents (because I usually wrap first and then forget what present goes to which person) It didn't take me too long and was really pretty easy. I cut some squares of card stock, stamped it, colored it in, added some glitter glue and wrote to and from. Here they are:

I'm very proud of the fact that I actually sent cards this year :) I think it came out pretty good

I've made quite a mess lol I have wrapping paper, gifts in bags and just Christmas-y things all over the place! I really need to go wrap those presents now, while Amber is happy. I've got two little helpers too!

Can you see Boo sleeping on the gifts and Mr Pickles doing something (probably along the lines of eating them).

Christmas is coming soon!! I have some very cute and festive pictures of Ambergini I'll upload later! Uploading pictures from my phone is fast and easy but, the quality is a tad crappy lol like the ones above :/

btw sorry I said lol about a million times in this post!!

What a Week! Everyone needs a Med student :)

What a week it's been! We started a little rough but it seems like we're back to better than normal! Its been quite some time since I've seen Amber smile but she gave me a few today and a pretty good attempt at a laugh! She also slept completely through the night last night!! She went from 9 ish to 7! It was probably due to a stressful day but fingers crossed it happens again tonight... she just fell asleep :)
To start Tuesday we had Amber's 2 month appointment. She is now 6lbs 11oz (13oz on Thursday) and 21 inches! That puts her in the 10th percentile for height and the 3rd percentile for weight. The good news is she went from the 3rd to the 10th percentile for head size! She has a little impetigo around her mouth but thanks to some antibiotics its almost cleared up.

At our appointment we met a med student, as part of her training she needed to follow a family who has a child with a on going condition. So she got to come with us to all of our appointments on Thursday. It was nice she asked a lot of questions we wouldn't have known to ask and they told her "Dr things" they wouldn't normally say around us.

We had our joint appointment with our geneticist and orthopedist. It went ok we really didn't find out anything new except that they both really think its Beals syndrome (which they had mentioned from the beginning) Beals is very rare but our orthopedists has had one other patient with it who turned out fine (yay!) They told us was her bones are very very brittle (more brittle than someone with brittle bones disease) a startle could break her thigh bone :( they were very surprised she hasn't had a break yet. By looking at the x-rays she had they could tell the Vitamin D has been working, the bad news is it's making the top of her leg bones ossify (this is bad because ossifying doesn't happen until the bones are done or almost done growing).
The other bad news is she started with very low levels of vitamin D and now she has very high levels of it. So her endocrinologist stopped her vitamin D and calcium treatment. She'll have her levels tested again in January and then in March after that we'll go from there. Its hard news to hear because we came from one Dr's appointment where they said the treatment was working but we still had a long way to go to another Dr who says no she can't have the treatment anymore but hadn't even looked at her x-rays yet. The good news is the orthopedists thinks that since we started Early Intervention and the stretches so soon the joint and muscle problems she has should be fixed without surgery or splinting! The other good news is the ultrasound on her soft spot came out perfectly normal! So I'm not sure but I think that means we can cancel our Jan. neurology appointment!

We won't see the geneticist or orthopedist until February and we'll continue to see them together. Our geneticist is conferencing with other geneticists this weekend about Amber so hopefully at our next appointment we'll get some better answers, I don't think we'll get any diagnosis until Easter at the soonest.

I'm so thankful that we have the holiday season off from Dr appointments so we can focus on spending time with our family and enjoying the holidays! You can expect some cooking and holiday fun blogging coming soon! Lol I was supposed to start some cookie making tonight but sadly that hasn't happened....I'm not even sure this post makes sense! Yikes I really need to upload some new pictures of the peanut too!

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!! :)

4 Weeks Fly By So Fast!

I can't believe that on Sunday little Amber will be a month old! And its been one crazy month! We've been going to the Dr's a couple times a week for weight checks and she's finally made some progress! It took her a month but she's finally over birth weight 5lbs 6oz :)

She's looking a little bigger and is finally wearing a few newborn sized outfits! Her hair is still dirty blond with platinum streaks and growing growing growing! She has long beautiful eyelashes that she likes to bat at mummy and daddy :) Another milestone....she got her first tubby! She's not too sure how she like being in the water but loves getting her hair washed!

I haven't mentioned this yet but I finally feel OK talking about it. At birth the pediatricians were concerned with a few things about her. She has very long, slender fingers, a narrow chest, loose skin, hyper mobility or double joints in most of her joints and one pediatrician said she had low ears (they determined it was one crooked ear). The pediatrician sent us to a geneticist in our area to have her looked over. They did some blood tests to check her genes and chromosomes and we are still waiting for the results to come back. They also took an x-ray of her chest and back. They didn't say anything was wrong with the x-ray except that she has osteopenia. This means her bones aren't mineralizing. After further blood tests they found that she has low vitamin D and high levels of alkaline phosphates. We're also waiting on the results on her parathyroid. The geneticist also diagnosed her with camptodactly (permanently fused joints) in her two middle fingers on her left hand and possibly part of her thumbs. So far treatment for these two things just consists of a liquid multivitamin, vitamin D drops and early intervention to work with her fingers. As of now I'm not really worried about any of this she acts like a normal, happy, healthy baby. The Dr's are jumping to the worst just to make sure they don't miss anything. Waiting has to be the worst part of it all but we're just focusing all of our attention on loving our little girl :)