doc band update

*This is a long story, but I want to document our doc band experience for ourselves and for others who are going through it right now, too. And I couldn’t leave anyone hanging on what happened on Friday.

Remember how I said that I am a reformed control freak? That’s because so many things about motherhood are completely out of my control.

On Friday morning, Hudson, Hayes, and I left Columbia at 7:30 a.m. and headed 90 miles north for Charlotte. It’s a very easy drive. We have our portable DVD player rigged up in the car for Hudson. The drive time happened to be when Hayes’s morning nap takes place, so he slept the whole way.

It did hail on us for part of the drive, but we weren’t in a huge hurry- our appointment wasn’t until 10:00 a.m.

We got to the appointment and Hayes immediately got to try on his new, fun, head accessory. I thought I was going to cry when they put it on him, but I didn’t. He looked really cute and it didn’t seem to bother him a bit.

Hudson was very interested in Hayes’s new “hat” and he was pretty well-occupied watching Tangled on the iPad. All the rooms at Cranial Technologies have lots of toys in them and most of them have some kind of exersaucer. Hayes was content to crawl around the whole time.

Around 10:30, our therapist came in and checked Hayes’s head for any redness and then made some adjustments to try to make the doc band fit a little better. She came back around 11:00 and put the doc band back on Hayes and then told us we could go kill some time before coming back at 1:00 to re-check Hayes’s head and the fit of the band.

I had planned for us to meet my friend Katie at a nearby Chick-fil-A for lunch so we could visit while we killed about an hour and a half before our second appointment.

I’m so happy that Katie met us there. I got us all situated with our lunch. Hudson did manage to spill almost all of his milk on his pants. (I had packed some spare clothes for Hayes, but didn’t even think of spare clothes for Hudson.) I gave Hayes a bottle, Hudson ate all of his lunch, and I got to visit with Katie. And I got to devour the yummy chicken tortilla soup. Have y’all tried it? Amazing!

Hudson got to play on the playground with about ten other wild, crazy boys, and Katie and I got to chat and play with Hayes.

I noticed, though, that Hayes’s doc band kept sliding down in front of his eyes. The back of his head is so flat that there wasn’t really anything for the band to rest on to stay in place. It just didn’t fit well.

We said goodbye to Katie and went back to Cranial Technologies. Our wonderful therapist also noticed that the band wasn’t fitting well, so she made some adjustments and it still didn’t help much.

They ended up taking photos of Hayes in the band and sending the photos to their corporate office to get their opinion. About 20 minutes later they told us that we needed to have a new band made.

When I heard this, my heart sank. I had almost survived this day without any major drama. Hudson had his “moments” and Hayes was cranky, but we were almost done! We had survived. And then they told me we have to start over?

I had to get Hayes undressed and we had to do all new scans, which we had done at his appointment 3 weeks ago.

I started to worry because he’s 10 months old now and he should have been in his band 3 or 4 months ago for it be the most effective.

But I didn’t cry. I really wanted to, but I didn’t. I told our therapist how tired both boys were and it was hard on them to go through long days like this. But she gave Hudson some candy, and of course, all was good!

Around 3:00 we left Charlotte and headed home. We scheduled our next appointment to get our band (again) and we’ll go back in a week or so.

I’m thankful that we noticed that it didn’t fit well. Because I want this to be a good experience and I want it to work. I want Hayes to be comfortable.

My boys are troopers. They slept the whole way back to Columbia and I spent time thanking God for keeping everything in his control. It’s not in my control at all. I am reminded of that time and time again.

But we survived. And in a week or so Hayes will have his doc band and we’ll be able to bring it home with us. My sweet Hudson isn’t always so sweet, but it’s not his fault. He did his very best on Friday and toughed it out for as long as he could.

Thankfully, my mother-in-law is going to keep Hudson when we go back up there for our all-day appointment. That way I can be 100% focused on Hayes, and Hudson won’t have to spend all day tagging along again.

Thank you all for thinking of us!

Hayes's Noggin

Thank you all so much for your comments, texts, tweets, emails, and phone calls yesterday. I could really feel them and so much of my worry was taken away. Todd and I have a fairly big decision to make, so thank you for your prayers.

Our sweet Hayes is healthy and wonderful, and we are so grateful. We have so much to be thankful for, and while this situation is a big thing in our lives, it may not seem like a big thing to someone outside of our family.

A few weeks ago at Hayes’s doctors appointment, his pediatrician told me that she wanted to refer us to Cranial Technologies for a consultation to see if Hayes needed to wear a doc band to correct his head shape.

This was something that I had been concerned about for the past few months. Hayes’s head is flat. And it’s really not just a little bit flat. It’s actually flat. Around the time he was 3 months old I noticed that his head was getting a little flat. And as time has gone on, our pediatrician has told us that she wasn’t concerned yet, but wanted to keep an eye on it each month at his appointments.

And as time has gone on, it just hasn’t improved. It’s not obvious when you look at him from the front, but the profile view makes it pretty obvious.

While Hayes can crawl now and he has been on all fours and sitting up for a few months now, his head still hasn’t rounded out at all on its own. When he’s awake, he’s not on his back at all. But when he’s asleep, he still sleeps flat on his back.

Tummy time “practice” never really phased Hayes. He would actually just lie down and doze off when I’d put him on his tummy on his mat. He’s just the most content kid.

When Hayes was 2.5 months old, he started rolling over. At this time, we stopped swaddling him and hoped he would start sleeping on his stomach. But he never did. He loves sleeping on his back (and sometimes his side) and is comfortable sleeping like that. We wish he would just flip on over and be a tummy sleeper.

The clinic we visited yesterday is in Charlotte, which is about 90 miles from our house. We chatted with a few friends who have gone through all of this to find out a little bit about what we could expect.

They took some photos of Hayes’s head from a few different angles so we could really get a good look at what his head looks like.

Mommies always see their babies as perfect. Seeing the pictures of Hayes taken at the clinic were pretty startling. It looked a lot worse than I’ve ever noticed before.

We saw the physical therapist and after watching Hayes and talking with us, she recommended the doc band treatment for 3-4 months. She said that he has Brachycephaly.

We are encouraged that the treatment can correct his head shape. And it’s actually a really light weight apparatus. It only weighs about 7 ounces, I think. So I don’t think it would really bother him all that much.

He would need to wear it 23 hours per day. And it’s imperative that he wear it while he naps, sleeps, and rides in the car seat.

But then the physical therapist told us that it’s up to us. This is our decision to make. She recommends he wear the doc band, but pointed out that if he doesn’t wear it he will still be healthy. This is an appearance issue. But he’s a boy and won’t have tons of hair to cover up his head shape and the doc band is more often recommended for boys because of that. She categorized Hayes’s head in the “moderate to severe” category.

So, the doc band is recommended. But he’ll be fine if he doesn’t wear it. It’s also really expensive and insurance rarely covers it. And the clinic is 90 miles away and treatment would require visits to the clinic every two weeks.

Then there’s the concern that your baby is “different” and will be wearing something that causes people to stare and ask questions. He’s just a baby and he’ll never know. And none of that matters, I know. But my mama heart breaks a little bit when I think that people may whisper about him.

The benefits of wearing the doc band definitely outweigh our concerns, worries, and the hefty price tag.

At this point, we’re waiting to hear back about the insurance situation and then we’ll decide based on the information we have.

Todd and I went back and forth about whether or not I should blog about this, but I’m hoping that I can connect with moms who have gone through this or who are going through this currently.

Has anyone been through this before?

I know that we would probably regret not going through with treatment, but I know we wouldn’t regret doing it for Hayes.

Related Posts Plugin for WordPress, Blogger...