Wednesday, April 8, 2015

Cranial Doc Band

Frankie has been wearing his helmet for about a week now. It has definitely been interesting! Frankie has not thrown much fuss about wearing his helmet, and appears to have adjusted to it pretty well. He objects to having it put on for first few minutes as we fit him with a helmet, then after that, he's golden. 

On March 31st, we went to Hanger Clinic, and met up with Dr. Staci. It was a long appointment, even though time kind of flew while we were there. We learned how to put the doc band on Frankie, how to clean it, and regime with helmet wearing. Dr. Staci measured Frankie's head, and took a couple pictures as "before" pictures, I suppose. Frankie was measured at 24 MM. Dr. Staci shaved off the foam on the inside, then put on Frankie to see how the helmet fit. It took a few tries with shaving, and seeing how it fit on Frankie's head. 

Since Frankie's head was oblique, think of an egg oval shape, the helmet was a bit loose on him, and Dr. Staci had put on a soft foam pad with a Velcro sticker inside of the helmet on the back. It helped to stop the helmet from getting too loose. We only had the foam pad on for a week before removing it. Anyway, we were told to start the regime of helmet wearing immediately after the appointment by 2 hours on, and 1 hour off cycle until bedtime. 

As the days gone on, we increased the helmet wear by doubling the hours of having the helmet on (2 hours on, 1 hour off, then 4 hours on, and 1 hour off, then 8 hours on and 1 hour off, and so go on). For the first 5 days, we did not have the helmet on for bedtime, and gradually got Frankie to become comfortable with wearing his helmet. By the sixth day, we finally reached to 23 hours cycle with one hour break. It was also when we started having Frankie sleep in his helmet at the night. 

Now, the first night was pretty rough. Frankie had a very hard time settling into a restful sleep. I admit that I did not sleep well either, because I was constantly waking up to check on him, and making sure he was okay. I worried that Frankie was going to get too hot, or not being able to roll back and forth easily with the helmet on. I experimented with clothes for Frankie to sleep in. It proved to be difficult. Frankie had a thin long-sleeved onesie with nothing for his legs, but his legs got way too cold. If I had him sleep in a sleeper PJ, then he got too sweaty, and hot. By the third night, I finally found a perfect solution!

I used Gerber Boy Baby thermal flame resistant PJ. It was just thin enough to allow air to get through so Frankie wouldn't sweat as much, and it kept his legs warm! We also kept the house temperature at 67 degrees, and it was still kinda cool outside. Frankie was comfortable in this PJ, which made me glad. 

I got one issue resolved, yet we still struggled with Frankie's comfort at the night until I noticed that Frankie liked to sleep on his side. Thankfully, it was not his "bad" side. I debated whether it was really okay to let Frankie sleep on his side, because as SIDS campaign has stated that it was better for infants to sleep on their backs to reduce the risk of SIDS. However, I decided that it was just better to let Frankie sleep in whatever position that enabled most comfort for him while sleeping. If he wanted to sleep on his side, then so be it, you know. Besides, from what I remembered, Forrest started sleeping on his side around 5 months old as well, and he turned out to be just fine. 

We returned to Hanger Clinic for a follow up appointment. Dr. Staci measured Frankie's head, and found that he went from 24 MM to 20 MM in matter of just a week! His flat spot didn't look as flat anymore. I was really impressed. It confirmed our decision to go with helmet therapy for Frankie. It also resolved some guilt inside me for putting Frankie through such discomfort lately. We also had the foam pad removed since Frankie's head grew, and the helmet fit him better. He had some red spots (heat rashes), and I was told to use A&D ointment (a baby diaper rash cream). By the way, it worked really well! 

Dr. Staci wanted us to come in every two weeks for Frankie's helmet therapy progression, because Frankie was still so young (only 4 months old), and his head has been growing so fast. She wanted to keep eye on him, and adjust accordingly as he goes through growth spurts. I scheduled appointments in advance in May. So we had an appointment on the 17th this month, then two more in May. 

Then on June 1st, I will be sending in the helmet to be painted by Paula Strawn. Google her. She does fantastic painting job on the helmets! She also paints orthopedic braces for the back as well.  I'm quite excited for that. It's why Dr. Staci gave us the head model (as seen in the first picture) for the helmet to sit on when it is shipped to Washington to be painted. At that point, Frankie's head growth should be a lot more stable (he will be 6 months old) to not need helmet for at least 36 hours. It will be a nice break for Frankie too. 

Anyway, I'm hoping that having Frankie's helmet painted will reduce what I like to call polite stares from people. As a Deaf person, polite stares is something I am very used to. Trust me, after 30 years of signing, not a lot frazzles me anymore, ha ha. However, when it comes to my kid, it sucks. It stings. I prefer it very MUCH so when people come up to me, and ask about the helmet. I find more comfort in that. Yes, sometimes the comments are a bit far fetched, or silly, but it invites discussion, and education. I enjoy that. 

The helmet does smell something fierce. Frankie sweats a lot while wearing the helmet. His hair is always so soaked when I take the helmet off him, and the body odor is just quite terrible. To remedy the smell issue, I mix baking soda with a bit of water, rub it all over the plastic part of the helmet on the outside, then shampoo it really good on the outside, and on the inside, and dry it with a rag. Then I spray 50-50 of rubbing alcohol, and water on the inside on the foam part. After all that is done, I blow dry the helmet on COOL setting. It sounds lengthy, but it isn't. It only takes me under 10 minutes to do it. I do this while Stu holds Frankie after his bath (his hair needs to be washed, and dried really good too). It removes the odor no problem, but after so many hours of wearing the helmet, it reeks again. It sucks, but what can I do. 

If there is a magical remedy or method to keep the helmet smelling clean 23 hours, then share with me! I would love to know. 

Yes, there has been some regression with PT after Frankie got his helmet. I am told to do tummy time in small intervals, and not to expect so much from him in the beginning. If it takes 2 minutes for Frankie to do tummy time after every diaper change, then fine with me, and we can work on increasing his tolerance again. I usually like to put him on my lap to give him some width off the floor, and play a game on my Iphone. It distracts Frankie from being on his belly, and he enjoys seeing a moving object on the phone screen. Sometimes, if Forrest isn't too rowdy, then one of our cats like to lay next to Frankie as he does his tummy time, and Frankie likes to try reach out to the cat. 

Hopefully, within a month, Frankie should regain his strength to do tummy time, and tolerate it better once again. The helmet is pretty heavy, and bulky. So it takes him time to get used to build up strength for tummy time. 

AT least we are on the way to fix Frankie's flat!