Monday, May 31, 2010

Memorial Day

In recent times Memorial Day has turned into a holiday to kick off the start of summer, full of barbecues and sales.
I would like to remind you all that it is actually a very somber holiday to remember and pay tribute to our service men and women who have paid the ultimate sacrifice for our country.
It should not matter what your political views are or your feelings on what our country is or has done. Please remember that these fallen men and women are someones; son, daughter, sister, brother, parent and friend. They gave up everything so that we can have everything that we do.

I would like to encourage you all to say thank you to those these men and women have left behind or place a flag on a fallen soldiers grave.
This is a great site if you would like to learn more about this holiday.
I would also like to share with you a quote from Christian Military Wives that says a lot about this day;

"This special weekend set aside for National observation is a time for us to publicly, prayerfully and thoughtfully remember those who have lost their lives defending this great Nation. Please spend time in prayer for our Gold Star Families. We have an opportunity to remember and honor the fallen by reaching out and loving those they left behind."

Thank You

Thursday, May 27, 2010

There's No Place Like Home

It's so true Amber is even better now that she's home. Every toy she greets like they've been parted for months its so adorable. She seems to be doing well. She was very congested in the morning but it cleared up, she only choked once. Now that she's feeling better she does not like the oxygen in her nose and is constantly trying to pull it out. It's so nice to have our chatty baby back!
Amber is doing well but I think the two of us are really stressed out. Last night we had a thunderstorm and lost power. I flew out of bed thinking her oxygen wasn't going to be working....her oxygen doesn't run on electricity so she was fine. Her pulse ox monitor does but thankfully it has a good battery power reserve. Her regular monitor isn't set up to switch to batteries so needless to say I did not go back to sleep until the power came back on an hour and a half later. The other stressful part of the night was that we had our air conditioner running which made it almost impossible to hear her in the monitor. We're still trying to figure out all the in's and out's of using her new equipment and what works best for us.
We had a really good visit from the respiratory therapist and a visiting nurse. Hopefully tomorrow we'll get set with a few more things we need.
As of right now that's all I can think of. We have a lot of things to get caught up on and a lot of moving around to accommodate the big oxygen tanks. Hopefully tonight goes well so we're revived enough to get what we need done!

Wednesday, May 26, 2010

Wordless Wednesday 'looking back and finally home'

This is something new for all of you!

Generally I wouldn't write anything but just so you know this is a picture for everyday we were in except today's is the home picture. We are so happy to be home thank you for all your prayers and well wishes. We should be hearing from the surgeon tomorrow afternoon to get his opinion. We are set up with oxygen at home and should be visited by a respiratory therapists and a visiting nurse tomorrow.

Tuesday, May 25, 2010

Day 4 Things Are Looking Up

Look at that there is actually something after the number today! I think that's almost proof enough that today is looking better! For starters I woke up in a good mood (that always helps)!

Our favorite day nurse was back! When they tested Amber without oxygen this morning she dropped into the low 80's but brought herself up to the mid 80's! She is still no where near ready to be off the oxygen though and they did not even try to wean her off today. She gave Amber a lovely bath and Amber smelled so good and her hair looked so nice! She's had a lot of diarrhea today but they said the antibiotic she was on can do that. They've been pushing solids to help get her poop thicker. She ate 4 oz of peaches today and almost 4 oz of bananas. The bad news is she just majorly threw up and had diarrhea on the two of us. I'm thinking it was over eating since she doesn't have a fever.

We were visited by a multitude of residents and med students (we're at a teaching hospital) today when the floor pediatrician came in. They bombarded us with questions about her sickness, general health history, genetic testing and anything else they could think of. After words I believe they had a session discussing her very much like an episode of House because one came back with theories and things we should tell her Dr's to test her for. They did inform us though that the testing they did when we first came back positive for a common virus. The virus usually causes croup but thankfully it's only cause Amber to have something like bronchiolitis. This means she doesn't have to be on antibiotics anymore.

We were also visited by the pulmonary specialists resident. He said that him and the specialist looked over Amber's recent chest x-ray (the one from Friday night) and it looks like her hernia has gotten worse and is now in front of her lungs. This is bad news because she doesn't have a lot of room to breath to begin with and coupled with the respiratory infection and intestines in front of the lungs she's really have a hard time breathing now. This explains why they are having such a hard time getting her off of the oxygen and why everyone is so intense of discussing her hernia. I've got an e-mail off to the guy in Boston who would be fixing that so we'll see how it goes. The bad news is the pulmonary specialist himself did not show up today. This mean we'll be spending at least another day here because he is the one that will tell the pedi floor team if she should still be watched for the virus or if she can just be sent home with oxygen to recoup at home. This is the second day he's stood us up so hopefully he actually comes tomorrow.

The best news of the day is Amber SMILED!! Finally finally finally! She really seems a lot better today her color is back and some of her energy. She was playing and acting more like her usual self. This really gives us hope that we'll be able to bring her home soon and get her some sun! Oh and she's gone back to refusing to go to bed lol so she must be feeling better!

Now for something that will make you laugh. In our tiny room is a pull out chair with a mattress smaller than a twin. The hubs slept on one comfortably all by himself when Amber was born. The last couple of night the two of us were supposed to be taking turns sleeping on it and an awful rocking chair. Well my hub is a bed hogging troll! So sleep for me wasn't going so well and sleep for him wasn't going so well because I would constantly poke him till he woke up. This is where being two tiny people comes in handy! Last night we both squished onto this tiny one man bed and actually had a very good nights sleep. The nurses and Dr's gave us very funny looks, I'm sure they've never seen two people actually try and successfully sleep on one of those!

Do you know what else made my day today! I logged onto my e-mail and saw a message from a mothers site that I use saying I was the winner of a resent giveaway! I had completely forgotten that I'd even entered. This is what I won. I can't wait till it comes in, of course it will say Amber and her birth date.

It's had it's ups and downs but I'd like to say overall it was a good day! Tomorrow I'm going to try something a little different. I hope it will something like a weekly treat for you all so you'll have to let me know what you think.
Have a great night!

Monday, May 24, 2010

Day 3

I have mixed feelings about today. I woke up in a funk and I'm ending the day in a funk but the middle was really good.
The weekend nurses and Dr's are gone. But our day nurse was amazing. Amber seems a little more like her usual self. She even ventured to eat almost a full 4oz jar of bananas! Apparently though the body uses oxygen to digest so she needed her oxygen turned up to .4 afterwards. In general she still is having periods of distress and her oxygen will have to be turned up a little every once and a while.
At this point they've stopped discussing weaning for right now. We're supposed to be seen tomorrow by the pulmonary specialist who follows us here. It sounds like we're not going any where for a while. Hopefully if we can get her down to a lower amount of oxygen and if she's having less periods of distress we'll be able to take her home with oxygen.
It's amazing how much better one can feel after a shower! I finally got one today. We tried to give Amber a bath but it didn't work to well. The poor thing really needs a good hair washing.
I'm sure theres more to update about but I just can't think of it at the moment.

Sunday, May 23, 2010

Day 2

Today is day 2 of Amber being in the hospital, I had to really think about that it feels like we've been here for longer than that.
She spent the night on .2 oxygen (had been at .3) and seemed to do ok. She woke up this morning very congested. Seems like she is feeling worse today; she's very fussy, not really with it and had one bout of diarrhea. The ER Dr we saw last Sunday came in and confirmed that it did look like she was having a much harder time breathing than when she looked at her last Sunday. So now her oxygen up to between .2 and .3.
They added a water bottle type thing to her oxygen to make sure she doesn't get dried out. When they did this they didn't break the seal to the bottle so Amber was on room air for less than a minute. In that time her pulse ox numbers rapidly dropped down to the high 70's. That accident confirmed to them that she definitely can not be off oxygen at this point.
The plan is still to give her another round of antibiotics tonight (her 3rd) and to wean her off the oxygen. Based on how she acted today I'm not sure when they'll try to wean her off the oxygen again. They can't give us an exact day we'll be going home because it really all depends on how she does getting off the oxygen.
We're praying she gets better soon, we just want to see her smiling again!

Saturday, May 22, 2010

Not The Getaway We Had In Mind

I think I mentioned earlier in the week that Amber has been really sick since this past Sunday. She's had a fever, congestion and diarrhea off and on all week. I thought she was getting better but yesterday she was extremely lethargic, very congested and seemed to be having a really hard time breathing.
After a long game of phone tag with her pediatrician's office we were finally able to bring her in. She had a fever of 101.2 and her pulse ox was reading in the low 80's. Anything below 92 is bad news. They sent us back down to the ER at UMass and we were admitted right away. She's been on oxygen and an IV since last night.
Her numbers are in the high 90's now as long as she's on the oxygen, as soon as they take her off or lower it her numbers drop. Around noon they dropped the amount of IV she was getting because she has finally started to eat better and have more/better wet diapers. Even though they've been constantly sucking out her nose and mouth she is still struggling with the amount of mucus she has. She had some good periods of sleep last night and today but she's still waking up and choking a lot.
Right now the plan is to wean her off the oxygen at some point either tonight or early tomorrow. They're hoping to get us home tomorrow but it doesn't sound too promising. There's not much else to say, I have a nasty case of mushy brain thanks to lack of sleep. I'll try and update some more when we have more information.

Friday, May 21, 2010

Flash Back Friday, "it's been a year!"

I can't believe it's been a year since we found out Amber was going to be a girl.

I still can't believe we thought she was going to be a boy

There was no sign of anything being wrong with her back then, other than a little bit small

She's even more beautiful in person!

I think in an attempt to get better at almost daily blogging I'm going to dedicate Fridays as "Flash Back Friday" and look at some old things. Let me know what you think!
Hope you have a great weekend, looks like it will be warm and sunny here!!

Wednesday, May 19, 2010

We're Still Alive!

Although we feel like death.
We had a very busy week and now we have a touch of the flu. Poor baby I think she started to come down with it Friday. Towards the end of Friday she started to get very fussy and not wanting to eat, Saturday was worse. On Sunday she felt really hot when we came home from church, she had a fever of 101.8. She seemed to have more labored breathing than usually so we were sent to the ER at UMass. It was just for safety sake and after a urinalysis, blood work, x-rays and hours checking her pulse ox she's alright, just a cold. The night was bad, Monday her fever was still high, she cried non stop all day and had diarrhea twice. Monday night was better she slept with us. Tuesday she slept most day her fever was better but she had diarrhea four times. Today is alright, no fever but she's back to being fussy and very congested. She's been sleeping on and off but she threw up once and she's had diarrhea three times in the two hours she's been up. It's very unnerving since has very labored breathing normally and since she's not wanting to eat now. Its comforting to know that everything turned out alright on Sunday but I think we'll be talking to her Dr again today. The good thing is she's getting a lot of sleep so I've been able to finally get caught up on mine. It was also nice to see how the UMass ER works. I will feel very comfortable going there again if for some reason we have a real emergency. They're waiting area is like a hotel lobby and they have a whole separate, very attentive section just for kids.

Nothing is better when you're sick than getting a package from Grammy!

She is such a sweetheart even though she felt so awful she still tried to be her normal happy self.
She was very interested in her package.

And she loves the new binkies!
She had a brief moment of feeling better so she played with them.

What We've Been Up To;
We've been working at mastering a sippy cup! She's doing better at it but still prefers to be feed by someone else. (she's not sick in this picture by the way)
She's also finally become un-constipated. I won't show you that picture, the poor thing! We saw her Dr on Thursday about her weight and constipation. He's not too concerned about her weight but he does want us to see the surgeon again and this time talk to his nutritionist too. He's put her on a daily stool softener that will be mixed in with a formula bottle. So far she hasn't been too happy about the formula. She hasn't had either of them wile she's been sick. The stool softener for obvious reasons and the formula because she's refusing it and all other solids. Hopefully (once she's better) the two of them will help her become more regulated and help her gain some more weight.

4th Times A Charm!
She's finally finally finally passed her car seat challenge!! The 1st time in the new car seat she screamed for the whole hour! Her pulse ox numbers were in the low 90's and her breathing rate was between 14-20. The 2nd time she slept for the last 15 min and her numbers were in the mid 90's and between 40-50. (b.t.w. they fail if the numbers go below 90) Ironically most babies numbers are worse when they are asleep.
Here she is in her new car seat!! We're still not completely sold on how good of a thing this is for her. She still seems to be having a lot of difficulty breathing in it and she screams if you go over any bump. She has odd shaped vertebrae so we're not sure if she's in pain when we go over bumps. Even though she's really padded in there she still jiggles around a lot and with her low muscle tone she has a lot of difficulty keeping her self upright and secure. I think we would feel a lot more comfortable if she were in something different but there is nothing on the market that really works for her. I've been looking into adaptive equipment so hopefully it will just be a case of adding more padding and support than having to get another new car seat.

Trot Trot To Boston
On Friday we went into Boston to see our geneticist there. So far all of the testing they've done has come back normal. So normal metabolism, no marfan and not the syndrome similar to marfan. We had a orthopedic specialist look at her who has treated Juene syndrome before. He doesn't think it's Juene's at least not a sever form of it. Right now her DNA and x-rays are out in California at a place that deals with the most Juene cases. They'll be able to do some testing and tell us if it's a form of Juene's or not. The newest thing they are looking at is some thing that abbreviates to UPD14. For some genes you need a copy from each parent. Sometimes something goes wrong and you get two copies from one parent and none from the other. In Amber's case she fits the description for getting two copies from her dad. So on Friday the hubs and I got out blood tested to see if this is what she has. I'm being vague about this one because it usually has mental retardation along with it and Amber is the exact opposite, this is why the Dr isn't convinced it's what she's has. Basically it's more wait and see. In the mean time she is trying to get us in to see pulmonary and endocrinologist specialists at Children's.
The biggest news we got was that they were both very surprised she hadn't broken any bones or been really sick. As we're finding out her being sick isn't like other babies. She doesn't have the reserve to fight things off, she can't expand her lungs like us to cough or clear mucus. It's very hard to watch her choke and sputter and not be able to do anything about it.

I've got to get back to taking care of this sick baby. Hopefully our life will go back to our normal sometime soon!

Thursday, May 6, 2010

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' 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!

Saturday, May 1, 2010

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!!