Update 4/13/22

So today started off bright and early with our road trip to SLC. Braylee had her appointment at the dentist at 10 o'clock where he had to pull 4 teeth. She had 2 permanent teeth coming in in front of her baby teeth that weren't even close to loose and then he pulled 2 others so her permanent teeth all had space to come in. She did great. We gave her some versed to try and help calm her nerves. As you can imagine she's pretty nervous about all procedures after these last 6 months. It took us about 10 minutes to talk her into letting the nurse put on the nitrous mask because she was afraid it was going to put her to sleep like when she has surgeries. Poor girl, no 9 year old should know about this stuff and worry about it. 😟 

A couple hours later she had her appointment with her plastic surgeon. This is his first experience working with medihoney (as it is ours too). We're all pretty interested to see if it will work especially since it's on her skull. With that being said we are going to give it another 2 weeks and hope that this medihoney works it's magic and gets things growing! If we don't see any progress by then then she will be heading into surgery for the big rotational skin flap. 

Send up some prayers, happy juju, or whatever you can that this will work and keep her out of surgery. 

Update 4/10/22

 Well, Braylee is just over a month post-op from her second revision.  I wish I had better news to tell you but it's not going very well.  She got her staples removed on March 22 and it looked really good and we were hopeful that it would close until about 4 days after and it started to open up more and more.  It is now bigger than it was before this last surgery and she has more skull exposed.  Her surgeon wanted to give it 21 days which that deadline is the week of April 18.  A fellow Apert Mom recommended we try medihoney since it helped heal one of her daughters wounds.  I asked her surgeon about it and he is all for trying anything that will keep her from another surgery,  so she has been on that for a week now.  We go in on April 13 to see him since she has an appointment with her dentist to pull 4 of her baby teeth that day.  If he isn't happy with her progress then she will unfortunately be needing a huge rotational skin flap revision.  He has been trying to avoid doing this surgery because it leaves more scars on her head.  We of course will do what we have to to get her healthy again but damn this poor girl has been through the ringer these last 6  months.  

Onto happier things.  Since we are staring down the barrel of another surgery we decided to treat the girls to a fun trip to San Diego over spring break.  Braylee's surgeon even gave us the go ahead to try a swim cap so that she could go swimming while we were there. It worked great and kept the top of her head completely dry, she was so happy she could go swimming.   We went to Legoland and they rode all sorts of roller coasters and had a ball.  All 3 girls love their rollercoasters which makes their Dad super happy haha, me not so much I'm scared to death of heights.  The next day we went to the San Diego Zoo and Braylee got to see the elephants, which are her favorite.  That zoo is seriously amazing, we were there all day and we only got to do maybe half of it!  The third day we went to SeaWorld.  They rode more rollercoasters, got to see the sea lion show, dolphin show, and the orca show.  All of them were amazing!!  Our final day before we flew home we went to the USS Midway, the girls loved the flight stimulator and  Braylee got a picture in every plane that she could, pretending to fly.  Seriously such a great trip with so many great memories made. Just what we needed.  

She is still our happy bubbly little girl.  We just need to get over this massive hump and keep on keeping on!  

 

Discharged 3/4/22

She's doing great and hasn't needed any pain meds at all. We are out of here and heading home!! 

Successful surgery 3/3/22

Braylee is out of surgery and he got her closed. It was really tough and hard to get and he ended up putting 4 staples in at the end to help pull and keep that last corner closed. We'll come back in 3 weeks to get those removed. We stay overnight and if tonight goes good and she's eating and drinking we'll get to head home mid morning tomorrow!!  We'll get to see her soon. Thanks for the prayers!! 

Surgery #12 underway 3/3/22

Well 3.5 months later and it didn't heal/close and she ended up having bone exposed once scabs fell off.  So we are back at Timpanogos Hospital and she is back in surgery to close up the hole that has yet to close by itself. Her surgeon is still worried about getting enough skin pulled up from the back of her head to close it. It's still thin but not as thin as her forehead. But he is hopeful. He anticipates it to take and 90 minutes. Please pray for our girl and her doctors. 

She got some versed to help her relax since she was scared and anxious. We got a little smile before she went back. 

2 steps forward...1 step back

Well of course we started to feel pretty comfortable with recovery and then BAM, brought back to reality. After her shower on Sunday night I was doing her hair and combing her hair back from her scar line when a scab suddenly popped and a bunch of pus came out. This is of course in a spot that wasn't in one of the big trouble spots either.

We took pictures and sent them to her surgeon, seriously love that we can contact him on weekends about anything! We tried topical antibiotics on it the last couple days but it's still wet/oozing and there's a hole now. So she is now back on antibiotics for at least 10 days. We went a whopping 27 days with no antibiotics. I'm trying really hard to not feel defeated but this recovery is seriously the hardest one we've ever done and she still has the monster surgery to come. So please pray that the antibiotics work and we don't have to go down the road of another infection clean out surgery. This poor tough little girl needs to catch a break. 

Happy 9 year Cranioversary!!!

 

Happy 9 year Cranioversary!!! We started this surgery journey 9 years ago and in that time she has had 11 surgeries.  I find myself rereading almost every blog on this day every year.  It brings such a wave of emotions.  Even though this journey started on the day she was born it just really hit hard on the day of her first surgery.  It made everything more real I guess.  

I know a lot of people have been wanting an update on how she's doing. I have just been waiting and waiting because there really isn't anything to report.  She is  over 2 months post op  from her 11th surgery and she is still recovering, we are just so frustratingly close to seeing if the skin has grown in under her scabs.  What we can see now is the edges look good but we just don't know what is going on in the middle underneath.  She was on antibiotics for 9 weeks and we finally got to stop those about 3 weeks ago and it is doing great and no signs of infection (knock on wood).  Below are some before and after pictures now that her swelling is completely gone.  There is a HUGE difference!! Although it is hard to see her sweet face changing from each surgery it is what is needs to be done to make her life better.  

She is doing great in school and just so happy to be back.  She got a little behind while she was out those 2 months even though Mom tried her best to teach common core math, it just wasn't the same as being in school.  I was sure glad they sent YoutTube videos for us to watch so we both could learn the steps. She always tries to do her best and that is what matters.  

She has been cleared to do pretty much everything but swimming.  She has started to do snow shoeing/cross country skiing with her special olympics group.  The ski boots hurt her feet so she likes to do snow shoeing.  She has been out on her snowmobile of course and loving it.  

It is just a hurry up and wait situation.  So hopefully the next blog I post will be that we are on the other side of this and moving on to what is to come next.  Until then we will keep doing what we have to do and try to have fun while we do it.  

This girl is so amazingly strong and brave.  We just take the lead from her and keep on moving forward.