Since the first time we stepped foot into the helmet place I knew this was not going to be an easy journey. I have a love/hate relationship with that place. I love the fact that her helmet not only will help shape her extreme misshapen head, but it also offers protection. I love that the helmet will alleviate the need for surgery. I love that the helmet will help her head grow symmetrically. I love that the helmet could help her vision some. I hate that no matter what time our appointment is we are there no less than 3 hours each time we go. I hate that the helmet shifts all over and bothers Amelia. I hate that the helmet stinks beyond belief.
When we got her helmet in Feb it was a bust. It was not fitted properly and therefore it could easily be shifted. The first full day in the helmet, while I took Amelia's breakfast plate to the kitchen, she managed to turn the helmet around, suffocating herself. Talk about scary. I couldn't leave her in the helmet. So we went back for another super long appointment. He was able to help it some, but not enough. Back we went. This time he tried to help it some more but also re-scanned her, just in case he needed to get a new helmet. After a few hours it was apparent that we needed a different helmet. These things are NOT cheap and our insurance was not going to cover another helmet. Thankfully he was able to do a warranty exchange and we didn't have to pay for this new helmet.
Last Friday Amelia got her 4th helmet. Everything looked really good this time. No shifting or tilting, pressure in the right places. I think this helmet is going to do it. Saturday night when I took her helmet off to wash her hair I noticed that her cheeks were really red (sign of the helmet being too tight). That's not a big deal. I will schedule an appointment and have him shave it down just a little bit. Problem solved. Everything else was great. Well I noticed that behind her right ear was red. There has to be pressure behind her ears to hold the helmet in place. Mr Helmet Dude knew that Amelia has a shunt and that her tube runs down behind her right ear. We discussed this at great length. He purposely put the pressure right behind her earlobe so that it wouldn't interfere with her shunt. The problem we ran into is that the helmet will naturally shift. It will shift when Amelia moves her head and it will shift when she tries to pull it off. This is natural and only shifts a little bit. Well that little bit is too much. When the helmet shifts it pushes on her shunt tube. Just a gentle touch is okay, but with her torticollis her head tilts to the right and puts a little more pressure on it.
What does that mean for her now? We have been advised to keep the helmet off her. I believe that the shunt tube was being pushed hard enough that it wasn't draining. When her helmet came off her head was hard and full. After about 2 hours it was back to spongy. So keeping the helmet off will make sure we don't have to do anything with the shunt at this time. But we have to do something. The purpose of the helmet is so her head grows symmetrically. Without the helmet the brain will only grow out the place where there isn't a bone. The rest of her skull will not grow. Her eyes and mouth will grow to the right and not the left. This will mean lots of plastic surgery to try to correct the issues, if they can be corrected at all. We can't get a plate put in her head until she is at least 2. We have a long wait for that. What do we do?
We have an appointment on Wednesday with her plastic surgeon and neurosurgeon. We will discuss the only option we have left, surgery for a temporary plate. This breaks my heart. Amelia has been making so many gains with gross motor skills. After surgery her biggest setback is gross motor. So it is highly likely that after surgery she will not be crawling, standing, rolling, or walking in her walker. After every surgery it has been about 3 months before she starts to regain these skills. She will gain them long enough to use them for a few months before her next surgery. This is so frustrating. As I said before, it seems like when we take 1 step forward we take 10 steps back. We were on the road to start helping her with her walking. Now we will be back to where we were before her hip surgery. Poor girl. She loves being mobile. She loves crawling around the house. Even more so she loves getting in her walker and going all over the house. She goes in every room, knows how to turn around, knows how to back up if she is stuck. It is so awesome to watch. After the surgery she will have an external drain put in and that means we can't even hold her to comfort her. She won't understand why we can't hold her. She will be so upset because she will feel like we are abandoning her. She won't understand that she has to stay in the hospital for a week. That we don't get to come home and play with the dogs, or go to the zoo, or go to Kroger for food.
When she has this surgery we will request that they shave her whole head (otherwise they will just shave the entire right side). This is so sad for us. She finally has hair that covers those awful scars. Looking at her head (at least the front left side) I don't tear up because of everything that has happened. Now we will have all those scars and stitches looking us in the face. The back of her head that is completely flat will be made very obvious. Yes, those seem like petty things to think about, but it hurts. It brings back all the horrible memories of when it all began. How I felt so hopeless sitting in my hospital bed, a mile away from my little angel. That the first picture I really got to see of her was of her head shaved, stitches all over the entire right side and across the back. Now I get to see this all over again. For the 3rd and not last time. Yes her hair will grow back, but that doesn't help with the pain I feel.
I have been a wreck since finding this out yesterday. I just want all this to be behind us. I want Amelia to make gains in gross motor, fine motor, and verbal skills. I want her to retain those skills and not lose them because of yet another surgery. My poor sweet little girl. I don't understand why this is happening. I don't understand what God's plan is. All I know is that I have to keep my faith and trust in Him. The prayers help me feel peace and calmness, but right now the only thing I feel are warm streaks running down my face.
Please keep us in your prayers. I hate asking for prayers for me when Amelia is the one who needs them, but right now all three of us need them, along with Amelia's surgeons.
