Monday, November 28, 2016

Christmas Photos

As someone who does photography on the side, I have to once again admit, my own children are possibly the most difficult to photograph. Never the less, I am cheap and kept up with the tradition of doing my own photos. Again. I'm just glad my editing has gotten better over the years. I will try to take more of Danny in the hopes that he will actually look at the camera, but if not, I love these regardless. :)

I've finished my holiday shopping with out even purchasing a single thing in the stores. THANK YOU to, amazon, kohl's and toys r us. I'm just not the kind of woman that enjoys shopping in public, unless it MUST be done. Wrangling a fussy baby is not my forte.

I'm pleased with the photos. :) I only wish I had the patience to take more. (haha)...

Plagiocephaly Journey Part II

It's getting increasingly harder to find the time to actually sit at the desk top and update. I need to make time though. I find sometimes, that I am entirely overwhelmed, and being able to type on my blog makes me feel like I have a little more connection to others.  I have tried to update from an iPad, but for some reason it doesn't allow me to upload photos. So, that being said, I am going to share Danny's scans from cranial technologies in this blog.

If you read my last blog, you know a little about the long wait to get to the point we are at today. Danny will be 8 months on the 12th of December, so he's a little in the older range for correcting the plagiocephaly.

Anyway, I love that cranial technologies has been so thorough with everything.  We did finally have the CAT scan done and are STILL waiting on word of the premature closing of his sutures in the back. I will call the neurologist tomorrow since we were told we'd be contacted in a few days.  I am going to figure that since Thanksgiving was last week, that is the cause for delay.  Here are the scans from our visit earlier in November that show you the levels of severity in his particular case:

 Below: I love that Cranial Technologies emails you the report, where as when you try 
to get copies of medical documents from most places it's 
a hassle, they charge you money and it could take weeks.

Tomorrow, we head back to get his cranial Doc Band placed. They say that we will have a lengthier visit this time, because they will need to shave the helmet down if it causes any pressure marks on his head. They also want to ensure that we are comfortable in removing and re placing the helmet.  He will be wearing this 23 hours a day for four months.  The cost is not cheap at 4 thousand, but thankfully our insurance is eating the cost (as of now).

I think I may try to search later for some decals to decorate his cranial band. Cranial Technologies releases a DOC BAND babies calendar yearly, and how cool would that be for Danny to be in it? - Making lemonade out of lemons. :D

I'll update more once he actually has the helmet on how it's going. Wish him luck!

Monday, November 14, 2016

This, that and plagiocephaly

Danny is now 7 months old. He's sweet, his smile melts my heart and the fact that for the time being, he thinks I'm the best thing in the world, leaves my world a lot more desirable. At 4 months, I noticed that Danny's head had a slope. His back right head was flattened while the back left protruded.

Being the medical nerd (and over involved mom) that I am, I knew right away that it was either craniosynostosis, or some form of plagiocephaly. Craniosynostosis is premature closing of the soft spots (sutures, fontanales). This causes the skull to misshapen. Plagiocephaly, on the other hand is primarily a positional issue. Be it sleeping patterns, or position in the womb.

I mentioned it to his pediatrician who seemed to not know what I was talking about but said it would self correct. Fair enough, he has the degree.

2 months later and trying the techniques of switching sleeping sides and tons of tummy time with no improvement, I grew frustrated. So at his 6 month checkup, we demanded a referral.

After the office losing our referral several times, they finally pushed one through to a neurologist.

Only, one problem - the wait list was 3 months out and correcting either diagnosis would require early treatment for the best outcome. Suddenly I was having flashbacks to fighting with Ethan's pediatrician for his issue and reliving that stress all over. I call the pediatrician and politely express my concern with timing and ask to be sent to another location. They promise to get on it but I later found out that they missed that one too 😡

Good news came when the neurologist office calls a few days later to inform me if a cancellation on Halloween. Needless to say, I snagged it up.

The appointment was short, the neurologist said one soft spot felt as if it were closing early, but since it was still open he would avoid surgery. He went on to say that he would order a referral for a CAT scan to rule out craniosynostosis- but that he would diagnose as plagiocephaly for the time being. He said once that came back it could take months to be referred to a cranio facial specialist. MONTHS?!

Just, no. I'm a mama bear over here and that wasn't going to work.

I tried poking around plagiocephaly support groups for advice but no one seemed interested in conversation. Eventually, however, someone brought up Cranial Technologies and I decided to call. The nearest office was 2 1/2 hours out, but for our child, worth it.

The first visit was free. It included a scan and report. CT decided a DOC BAND helmet would need to be prescribed and so we hounded the pediatrician office to sign off on it. They lost that too. Stephen got annoyed and drove to the pediatrician, while the wonderful staff at CT refaxed the paperwork. In true fed up Dad fashion, he didn't leave until the paperwork was signed and sent back.

Today we wen back to CT for Danny to be fitted for his custom helmet. In two more weeks he will have it and wear it 23 hours a day for 4 months.

As of now, insurance is eating the 4 thousand dollar cost. Thank God, because I wasn't sure what we were going to do.

I should mention we have the CAT scan Thursday.

I don't feel weird about the helmet, I'm thankful it exists to correct the skull. I will have to admit, the first time I saw a baby with one, I was a young teen and wondered, "why the parents put the baby in a helmet, was he falling a lot? Were they over protective?" And, here we are...

He doesn't fall, he barely wants to crawl, but we are definitely overprotective, and he will definitely be okay when it's all over. God is so good!