New friends, good news and bad news

Today was an exhausting day. Elias and I spent most of our day either in Children's Hospital or around it. We had two appointments: check-up appointments with the surgeons and a star scan.

New Friends

Our first appointment of the day was a check in with the neurosurgeon and plastic surgeon. As you probably already know from reading my posts, we have had several of these appointments. Nothing major to report as the doctors asked the same questions and seemed overall happy with his recovery. 

I did get to ask why the surgeons were different than the ones that performed the surgery. The reason is that they, the collective doctor team that deals with kids with craniosynostosis, likes to have regular check-ups on the kids and the schedule works out that Dr. R and Dr. S are the ones that are working at the time. 

Now onto the new friends portion! As I mentioned before, I was able to connect with a mom whose child will be going through the same thing. As we were texting, I found out that we were both going to be at the star scan around the same time today. What a great opportunity to meet and connect! As I was waiting for the appointment, I actually sat down beside another lady and child who had a clear helmet on (not the one I had been texting with. Although she did come a short while later). Long story short, we all started chatting about the process with one child not yet having the surgery, another child 1 month post surgery and Elias 7 months post surgery. Everything the mom with the child 1 month post-op said, I could totally relate to. It was definitely a mini support group meeting!

It was really great to meet with other moms who were going through the process. However, I was saddened to hear that the mom I hadn't connected with before today really didn't have any support. She didn't know anyone who had gone through the process. I did mention a Facebook group that she could join but I really should have friended her on Facebook. So if by chance you're that mom I met today, I'm sorry, we should have exchanged info. I would still like to connect.

Good News

The knowledge of people needing a connection with others brings me to part 1 of 2 for my good news portion. 

A new nurse has joined the ranks of the craniosynostosis department. She is a younger person and (not to offend any of the older generation) a little more "hip" with technology. Through a conversation with another Mom, this nurse found out about my blog and she asked me about it. I told her the details and she asked if she could share it with other families (I'm pretty sure she is going to read it first before she passes it on to others). My immediate response was yes. I really want to be able to support anyone that would be going through this journey. So now the pressure is on... (come on spell check!)

Part 2

We finally found out how long Elias will be in a helmet. 

Side note: I was reading some Facebook posts from one of the Craniosynostosis support group pages and found out that when a kid wears a helmet to reshape his or her head it is called helmet therapy.

Elias' last star scan indicated that his head shape was considered to be in the normal range. Dr. R had said today in the follow up appointment that likely we could take it off right away. However, he did mention that the head can tend to shift back to the original shape and recommended we keep the helmet on until Elias' first birthday. Both Sean, my husband, and I agreed that keeping the helmet on was the best option.

Star scan results. This is the 3-D image that is produced while Elias is in the star scan.

And now the Bad News...

After the star scan, I met again with Dr. R to discuss what our options would be with the helmet. Elias hasn't really grown from his last appointment, which is a concern for me. Also, Dr. R informed me during this meeting that Elias' head had actually grown in the wrong direction. There are two possible explanations for this: 

1. Elias hasn't been wearing his helmet or 
2. Elias' helmet is too big and not holding the head in the right spots.

Needless to say, Elias has been wearing his helmet for the recommended amount of time - 23 hours a day. So we will be heading back to Snider Orthotics, the place where we get the helmet fitted, next week to try to figure out how to get this helmet to fit better. 

I can't remember if I have stated this is in previous posts but I officially HATE helmet therapy. Don't get me wrong, it produces beautifully shaped heads but it is so frustrating when it is not doing its job! If it wasn't plastic and bad for the environment, I might just throw the helmet in a bonfire once we are done with it. 

Hopefully we can get the helmet to fit better and Elias can have a growth spurt. 

Up Next

July 2020 - Star scan and check-in appointment with surgeons.
If you will notice, July is 6 months from now which means we have a longer period of waiting between appointments. Hooray!

Elias 9 Months Update

Merry Christmas and Happy New Year!

I recently had a friend reach out to me about someone whose child is going through the same thing as Elias. As I read the text about the conditions, it sounded exactly like what Elias had and I didn't have to read through the whole thing to remember the feeling of helplessness and fear for my child. For me, having a child with a fever at home freaks me out. However, trusting God and having family and friends close by really helped me when it came to the surgery and recovery. 

I would like to let you know, if you know someone that is going through the similar situation, please don't hesitate to pass them my number or email (or this blog). I would love to talk to them about the process. They are not alone and there is a light at the end of the very scary tunnel. Also, there are some Facebook support groups for parents who have children with craniosynostosis. I can't endorse any of them as I haven't officially joined any but they are out there. :)

Elias - 8 months old. Christmas picture without a helmet. He still needs to wear it.

Elias update:

Elias is 9 months old. We recently went to his 9 month check-up appointment with his pediatrician. Elias is healthy and there are no concerns with his health. Dr. F, pediatrician, mentioned that the neurosurgeon and plastic surgeon were really impressed with the shape and progress of growth of Elias' head. She also mentioned that there is a possibility that Elias will have to wear a helmet until he is two since the head plates can continue to shift until then. When we went to the most recent helmet fitting, the technician had said that Elias will likely have the helmet on until at least one year of age, which surprised me. I was told that around Christmas to January Elias would be getting rid of the helmet. However, it really just depends on growth spurts. Elias is at a lull for growth right now. He is way too interested in trying to figure out how to crawl and get all of his big brother's toys lying on the floor.

When we take off Elias' helmet, his head is looking great. His scar is minimal and his blonde hair, which isn't thick, covers it up. You have to search for the scar to find it.

9 months old. Can you spot the scar?

With the helmet on.

Elias was in a photo shoot for the Snider Orthotics Design Company. Snider Orthotics is where we go to get helmet fittings. I think that they were updating their website and we just happened to be there while the photographer was there. No toddlers and tiaras for us. I haven't found the picture yet but if I do, I'll be sure to post it.

Elias had his first swimming lessons today (aka I'm in the water holding Elias while he splashes around). For those who may be curious, Elias can do any activity that any kid his age would engage in. We just have to take off his helmet while he swims. The time we use to have his helmet off during swimming lessons counts toward the hour he is allowed to have his helmet off during the day. Elias did really well in the water as he didn't cry once. His mother, on the other hand, was NOT a fan of the cold water.

Up Next in January:
Follow-up appointments with Neurosurgeon/Plastic Surgeon
Helmet Fitting
Waiting for a growth spurt