What is Craniosynostosis?

If you have not had a chance to watch this video where I try to explain what craniosynostosis is in such a way that many more could understand, please give it a view!  I am working on some follow up videos where I will tackle other aspects of cranio so any feedback that I can get now would go a long way in making the other videos even better.

ALD Evaluation

Last Monday we took a family trip to a VCUHS satellite location that is dedicated to children’s therapy. This was the day before the eye surgery, and I mentally set it aside afterward to focus on the procedure. At the therapy center, Zoey was evaluated by an OT, a speech pathologist, and a training therapist for an assisted learning device. It’s essentially a tablet that is specifically designed to assist kids who have trouble with speech. It’s programmed with a system that provides spoken phrases using finger muscle memory in a series of keypads, much like typing on a keyboard. I was almost teary-eyed watching Zoey get so excited about her sudden, new-found vocabulary. As I worked on paperwork for the purchase order, she was eagerly searching for the words for all the zoo animals that were on the puzzle in front of her. Meanwhile, Cranio Dad was on David duty, and got his full workout as a jungle gym and tag partner. Unfortunately we won’t get a home device for ourselves for a long time. The full process of paperwork traveling from therapist to doctor to insurance to device provider, before the device is finally shipped to us, is estimated to take 3-4 months. Slightly longer than ideal, but I am so excited for Zoey to have some new encouragement in expressing herself. Personally, I can also only say the same word so many times anymore before my patience goes out the window. If Zoey can carry around a device that helps her develop her words more consistently while also communicating with others, score for all of us!

Post-op Day 1 

A little redness, a little swelling, and a lot more focus. After sleeping for practically 24 hours straight, Z woke up in a much better mood. Her post-op appointment was late this morning, and the doctor is very impressed with the results. We are supposed to keep her eyes clean and dry as much as possible for the first week. The swelling and black eye might take up to three weeks to completely heal, but rarely does Zoey take as long as doctors estimate. We are so glad to be on the other side of this one, and we are ecstatic over Zoey’s already improved vision.

An Eye Procedure

Tuesday morning Zoey had her ninth procedure, which corrected a few eye muscles to encourage her eyes to realign and work together more often. We left the house shortly after 6am and the anesthesiologist began his job around 7:30. We couldn’t believe it when we saw Zoey again before 9:30. So rarely do these procedures end this quickly for us. Even with the best of specialists, Z has some pretty unique anatomy and there tends to be a few surprises once they start working. This time the eyes muscles were in a little bit of an unusual position, however, Dr Wortham seemed very pleased with the outcome when he talked to us immediately following the surgery. We are excited to see how Zoey is affected as she recovers. For now she is sleeping on the couch while the rest of us finally grab some breakfast.

Check up

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On Tuesday afternoon we headed downtown to visit our pediatrician. Zoey had her 4-year check up and clearance sign-off for her pending eye surgery next week. David was his usual smiley handful of screaming energy. They each colored, had two snacks, took off their shoes, weighed each other, and attempted a few tries at the computer password in the exam room during the waiting time. Zoey also re-examined her own ears, blood pressure, and temp. Just in case, I guess. Overall, she is doing really well. She put up an admirable fight for her two vaccines, which took two nurses at her legs while I held down her arms. I believe the phrase “strong as an ox” was used. Sometimes I wonder what it would be like to have weaker kids, and I’m so grateful that they can each hold their own…even if it means I’m the one needing to fight back most often. As soon as Z saw the pink band-aids with little bows, all was good again. They lasted the entire day, and the first thing she had to show Daddy when he came home was her pink battle band-aids still on her thighs.

Every trip is an adventure and another ten memories that provide me with an exhausted smile at the end of the day. After 3 initial years of fighting for a feeling of normalcy in parenting, these really are the best days for me so far. Even the bad days hold so much joy when I look for it. My kids are eating, sleeping, playing, and growing right in front of me. Life is good.

Eye Procedure Pre-op

This morning was Zoey’s last appointment with her eye doctor before her pending muscle corrective surgery, scheduled for the morning of the 26th. I took both the kids with me and they did really well, even with a 30-minute delay in the waiting room. I love that Z is becoming more self-sufficient these days. Just in time for another child ;). This will be the 9th procedure for Z, and the first time in a different hospital. It makes it a little scarier for me since none of them normally work with her. The procedure itself is supposed to take about 40 minutes, and about 2 hours total from sleep to wake up. It’s nice to have so much going on these days because I don’t have a lot of down time to worry about it. Tomorrow we see Dr Romesh, our pediatrician, for Zoey’s 4-year check up and clearance exam for the procedure. 

Tons going on this week….

This week is going to be a busy one… heck, the next two weeks are going to be nuts.

ALL of the videos are ready to be uploaded to YouTube for to be caught up with Dungeons and Dragons.  My playlist for D&D is going to explode from 31 to ~115 videos in the coming days, but I will finally be caught up.

We finished building and prepping the garden for Daddy Gardens, a video and post about that will be coming out this week.

I ‘should’ be able to start/finish building the LONG overdue toy box for Daddy Builds this weekend!

Thursday there will be a video coming out on my YouTube channel explaining what Craniosynostosis is (through the eyes of a parent).  It also marks 4 years after the day we finally were able to bring Zoey home!

I will also be posting a video and blog about preparing for Zoey’s next surgery (that happens to be next week).

I should also mention that my beloved bride is speaking at MOPS this week, also needs to set up the child care that she manages for MOPS, there are a few appointments throughout the week, the grass needs to be cut, the mulch needs to be done, blah, blah, blah, blah….

I am already way too tired for this.