Happy Birthday Alvin

Dear Alvin,
   It's so hard to believe that you are FOUR now. On this day in 2008, you were born at 4:53pm.  You weighed 7 pounds, 2 oz and were 20 inches long. Today you are 33 pounds, 4 oz and are 38 inches tall! What a big boy you've gotten to be! You're even going to school now! It's been 4 years of ups and downs, but you are always cheerful. I love you monkey.
                               Mommy

 Alvin at 1 day old. Taken in the hospital

 Alvin at 3 days old. The day we brought him home from the hospital.

 Alvin at 1 year old. Eating cake at his birthday party.

 Alvin one year old, professional picture w/ doc band

 Alvin at 2 years old at his birthday party

 Alvin at 3 years old, blowing out his birthday candle

Alvin at 3, professional picture

Alvin this morning, at age 4!

April Photostudy

The picture on the left is when he started the cranial banding in November, and the picture on the right is his picture taken just a few days ago. Notice how much his head has rounded out.

Its been a while

I know. I am sorry. Things have been hectic around here. My main blog has some details on things going on with Alvin. So, look for updates over there for the past couple of months. However, I promise I will actually update THIS one from now on.

Here are his new helmet designs.

So much to do

Yeah, too much to do. In these next two months, as of right now, I am looking at 5 visits to Cranial Technologies, a visit to the GI doctor, a sweat test at Yale, finding housing, packing up this house, moving to said new housing, my birthday, Alvin's birthday, and hosts of other things. Oh, did I mention I get to do this all alone? Yeah. Loving the Navy right now. *eye roll*. I know Eric isnt going to have a much better time. He is staring down both ORSE and the coner's version of it. (I forget what it's called). Add in he is taking chief examination at the same time, and yeah. Woo hoo! We are both rather snippy with each other.

Oh well....Its my life.

December 23rd's visit to Cranial Tech

Yes, that is a new design on his cranial band. The other started peeling off, so we took it the rest of the way off and put this new one on. Its Chip and Dale. The red is more sparly than it shows in the pics.

Anyway, to the visit. There is definate improvement in his head shape. He is getting a very slight roundness to his posterier and he is filling out in his forehead. Yay! Good news for once! Woo hoo! We got back again in 2 weeks.

In other news, we finally got his appointment to the see GI scheduled. He goes there on February 4th. Yes, the day before his bday. (and my actual bday). We get to spend it in a doctor's office. What fun. But, at least we got the appointment.

Alvin's photostudy

The results have been posted. Check out his blog.

Alvin's Photostudy

Well, its officially been a week since Alvin was banded. He is adjusting well to it. He still gets upset when it's time to lay down with it on, but other than that, he is doing well.

We have his photostudy back. So here goes:

Alvin is a 9 month old male referred to Cranial Technologies for treatment of his brachycephaly. He presents with left occipital flattening, right frontal flattening, and associated facial asymmetery. He has an ear shift with the left ear anterior to the right and an increased head width to length ratio.

Increased posterior head height and a sloped forehead.

Left occipital flattening; right frontal flattening; increased head width to height ratio; left eye and cheek anterior to the right

Alvin's Photostudy

Well, its officially been a week since Alvin was banded. He is adjusting well to it. He still gets upset when it's time to lay down with it on, but other than that, he is doing well.

We have his photostudy back. So here goes:

Alvin is a 9 month old male referred to Cranial Technologies for treatment of his brachycephaly. He presents with left occipital flattening, right frontal flattening, and associated facial asymmetery. He has an ear shift with the left ear anterior to the right and an increased head width to length ratio.

Increased posterior head height and a sloped forehead.

Left occipital flattening; right frontal flattening; increased head width to height ratio; left eye and cheek anterior to the right

Day 3

His helmet once we decorated it

So, he is still having fits while the band is on. But, it is getting better. We are up to 5 hours on, 1 hour off. We start going down for a nap today with it on. Then, to 7 hours on, 1 hour off tommorrow. Then finally on Saturday night, he will go to bed with it on and on Sunday be wearing it for the full 23 hours a day.

He has been banded!

So, today was the day. He will wear the band for approx. 14 weeks. That is all dependant on how well this works.

Cranial Tech-Visit 1

So, we went to Cranial Technologies yesterday and started on the journey of cranial banding. We had a nurses consultation, then a head scan with digital imaging, then off to the photo study and "headsicling".

I feel bad for my little man. He -hates- his head being messed with and that is all they did yesterday.

Getting his consultation done. He was happy at this point.




The horrid stocking they had to put on his head to do the digital imaging and all that. He hated it.


Waiting on the photostudy to begin.

Background Information

Well, since some of you might be new to his story, or some may just not know fully. Here is the background to Alvin's story.

He was born almost a month early and after severe circumstances during his pregnancy. Around 2 months of age, the Pediatrician noticed that Alvin could not move his head to the right, and that his head was becoming increasingly more deformed.

This led to many hours of "tummy time" per day. Up to 8 hours on some days. No marked improvement was made. In fact, his head only got worse. So, then it was off to Dr John Persing at Yale Medical in New Haven. Dr Persing is a craniofacial specialist.

Once their, he diagnosed my baby with severe Plagiocephaly and Brachycephaly. This was partially being caused by his Torticollis. Their suggestion on treatment was a DOC Band. So, this diagnosis began the 5 month fight to get Tricare to pay for this treatment. They refused and continue to refuse.

So, today begins Alvin's journey. We are paying for his treatment out of pocket. Today we are going to have a head cast made and Alvin to have a full work up on any other underlying issues he may have. Cross you fingers, this might get bumpy.




**For more information on Prevention of head deformities, please visit: Heads Up Baby and Cranial Technologies **

Welcome

So, I am starting this blog as a way for people to follow Alvin's treatment and development, without taking over my entire blog.

So, we go on November 4th to Cranial technologies to get his head scan and get fitted for the DOC band. Then, we will be picking up the band on November 18th, if not before. so, here we go!

Finally, some good news

For those of you that follow Alvin's story.

There is hope on the horizon. The doctor that will be seeing him for the cranial treatment has agreed to donate his time. (IE, no doctor's fee). Cranial Technologies has agreed to a payment plan for their fees and NMCRS is willing to foot for $1000 of the bill.So, instead of a giant $10,000+ looming over our heads. Its looking like we are going to be able to do this for 5 payments of $900. So, finally, my baby is going to be getting the treatment he so desperately needs. Coming up with $900 a month isnt going to be easy, but its sure going to be easier than 10 thousand up front.

Hardest Decisions

Sometimes in life we are faced with some very tough decisions. I am finding myself smack in the middle of TWO, count em, TWO decisions that I have to make.

The first is a personal decision. I have chosen to cut ties with a long time friend who does nothing but drag me down. Its always about their life, their needs, their wants. Its 1am phone calls, and advice wanted. Only to find out that they stay in the same cycle day in and day out. They seem to forget that I have needs/wants myself. But its always the same. "Woe is me. Woe is me. You cant possibly understand how bad my life is." My advice has always been the same. What would it take to make your life better? Followed by hours long phone calls and IM's and text messages. We talk about choices to make, ideas to persue, and a plan of action. But, three days later. Its the same phone call all over again. "My life sucks. My job sucks. My relationship sucks." Its a neverending bitter cycle that I refuse to be involved in anymore. Its killing me inside to know that they just wont have the kind of friendship with the rest of their friends as I have always been the one to tell the honest unabridged truth. And its killing me to tell this person Goodbye.

But I will be stronger for it.

The second is a decision that I hope no one else ever wants to make in a million years. The decision from the appeals process has been decided. Tricare is NOT going to cover Alvin's helmet. No way, no shape, no form. I had been talking to the Health Benefits Advisor(HBA) at the clinic. She was working with me and trying to convince the HBA of Tricare that this was indeed medically necessary. To no avail. Also, the clinic was toying with the idea of helping us to pay it themselves. This has since fallen through as well. So, unless we can come up with the money ourselves, its looking like Alvin wont get his helmet. So, the only other thing we can do is wait until after he is a year old. Petition to have his development monitored and then attempt to have neurosurgery to fix his head. This process can take up to a year and half to complete. Or..

We can do nothing and just let him develop however he is going to develop. Right now, after reviewing his file, the doctors feel that he is the developmental equivalent of a 4 month old. He is almost 8 months old and it breaks my heart.

What to do? What to do? And how do I tell Eric? Email? Or do I just wait until he gets home? Sigh. Hard decisions, no easy answers.

Alvin's latest checkup

Ok, so we are freshly back from the NACC and I am armed with plethora of information. This was his 6 month checkup. (yes, I know he is only 2 days shy of being 7 months, but at least he made it in while he was still 6 months). So, what did I learn?

Alvin is now a whopping 15 pounds, 7 ounces. He has finally doubled his birth weight. Still almost a month behind on that, but at least we hit it. Percentile-wise? Yeah, he doesnt even touch the growth chart. No surprise there.

He is also an impressive 25 1/2 inches in length. So all in all he has grown 6 1/2 inches since birth. Woo hoo. Again, percentile-wise, we dont hit the growth charts.

His head is 17 inches in circumfrence. What that means, or what percentile? I dont know. They dont generally talk to us much about what his head is doing. They send all that info to the craniofacial specialist and they talk to us. Or, at least, are supposed to talk to us.

Anyway, I talked to Lynn today. (The wonderful nurse at the NACC who is working on getting Alvin's band). Apparently, no one has done anything cause his referral and records were 'misplaced' during the great doctor shuffle. So after explaining the plagiocephaly and brachycephaly that Alvin has to the NEW doctor. I was finally able to have a solid discussion with the doctor, the nurse and the head dude at the NACC. Lynn is going to be 'on the ball' in getting his band through. She is hoping that we can have it in time for Christmas. Oh what a wonderful gift that would be.

EDITED TO ADD: Apparently I totally flaked earlier, but the demon grew fangs. That is right. Alvin's front two bottom teeth came in today. Yay, now when he bites, its gonna hurt.

Now, it is time for me to go. I have more cleaning to do until Emali comes home, then its time to go remove my husband from the evil clutches of his demanding other wife, Virginia. And trust me, she doesnt share well.

Alvin--update

We went and saw the craniofacial specialist at Yale Medical. They are not willing to confirm craniosyntosis just yet, but they have confirmed that he has 2 deformities of the skull: plagiocephaly and brachycephaly. Basically, the left side and back of his skull are completely flat. They are going to be doing some sort of diagnostic readings on his head today, then we will have to have a 360 point head scan in the next week. Then, those images will be sent off to create what is called a DOC band (http://www.msplinks.com/MDFodHRwOi8vd3d3LmNyYW5pYWx0ZWNoLmNvbS9UcmVhdG1lbnQvaW5kZXguaHRtbA== ) will wear for 8-12 weeks to start. If no improvement is seen, then we will go from there. He will have to wear the band 23 hours a day. And we will have to go once a week to Clinton, CT to have check ups. This royally sucks, but, in the end, its better than having to face surgery. I am sooo glad we live in CT too. Becuse if you click on that link, there arent many of these treatment centers around.Basically, what we are being told is this. They dont know what is causing it. His sleeping and tummy time patterns do not coincide with the flattening of his head, but the coronal suture isnt completely fused either. So, we are going to try this and see if it works. I will keep everyone posted as his treatement goes along.