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!