Helmet head

We finally went back to the helmet place. It's been a month since she's been out of the Helmet. The helmet dude (he's not a doctor, not a therapist, so he is the helmet dude) was shocked that the helmet still fit. The only problem was that it pushed her brain up and created a lump at the top of her head. I wasn't comfortable with that and he wanted the entire area there is no bone covered. So she was measured for a new one. So long as there aren't any issues again with insurance she will be in it in 2 weeks. I'm hoping that's the case because the sooner she gets in it the better it will be. Not only will it hopefully aid in shaping the rest of her skull so she can have another surgery, but it will also protect the area with no bone. 

The time she was in her helmet was well worth it. Symetrical her head started off at a 10.5. Normal is under 3. Today she was at a 3.4!! She does have a bulge on the right side of her forehead and that helped a little but the back of her head looks much better. I don't notice these things because I see her 24/7 but helmet dude noticed and the scan confirmed it. I'm glad something finally has gone correct. The length/width ratio has increased, but that was expected because she doesn't have a bone on the right side anymore. 

Amelia really loves her helmet. She got super excited when he put the helmet on her and then got sad when he took it off. That's a blessing because I can't imagine how uncomfortable that is for her and she doesn't mind it. I'm so blessed to have such a happy, go-with-the-flow, compliant girl. She for sure gets that from her daddy. I'm typical type a, everything planned, everything perfect! 

Plastics and NS appointments

Today we met with Amelia's NS and plastic surgeon. Everything looked good. Amelia was scheduled for an MRI in two weeks but her NS likes to have them 3 months post op. That appointment was schedule after her follow-up from her last surgery. So we get to cancel one appointment this month!! (Yes we have to still go in a few months but that's okay). He is also referring her to a rehabilitation doctor. She will monitor Amelia's cerebral palsy and her developmental growth. She will give a plan for PT and OT and help with everything. Yes it stinks to have yet another doctor added to the mix but I think she will really benefit (not just Amelia, but myself too). 

The appointment with her plastic surgeon was uneventful. Still the same plan. Get back in the helmet (we go next Wednesday) and let her grow some before the next surgery. See ya in 6 weeks. 

Tomorrow we have therapy and then on Friday Auntie Earmuffs and Uncle BDB will be here! Even though it's a super short visit I'm excited. I don't get to see and talk to adults with the exception of doctors and therapists. Any time I can have adult conversation is welcome! Plus I miss my family. 

Guilt, heartache and pain

I'm not an open person. I hold my emotions in and try to keep a smile on my face. So sharing this isn't easy for me. For years and years I've seen people having babies. It hurt so bad to know that I would never have a child of my own. Yes we tried adoption, but that's just not the same. I wouldn't feel my child kicking in my belly, I wouldn't experience all the emotions of pregnancy, I wouldn't give birth to my child. I was happy for all my friends and family that had children, but it killed me. Honestly, it still hurts some. Even though we miraculously got pregnant, it took 12 years and tons of heartache and pain to get there. 

Every time I look at Amelia I hurt. I feel so guilty for what happened. It was my job to protect her and keep her safe and healthy and I failed. You can tell me till you are blue in the face that it wasn't my fault, but it will not erase the guilt and pain I feel. I used to sit in her room while pregnant and wonder what she would be like. I would smile thinking about how I would see so many firsts in that room. Her rolling over for the first time, crawling, sitting, her first steps. Now I can't be in there without some sort of distraction without breaking down. Putting her to bed is the worse. Sitting in there, holding her, I just feel so horrible for everything she has been through and everything that she will go through. Watching her struggle with things that should be easy hurts. Thinking about things she may never be able to do kills me. She gets so frustrated not being able to be mobile and it's hard to watch. 

One thing that makes me feel even worse is the pain in Matt. Seeing other babies do things that we don't even know if Amelia will do hurts. What makes me hurt more than ever is the pain in Matt as he says "did you see x doing y? It sucks doesn't it?" I feel like not only did I let Amelia down, but I've let Matt down too. 

 It's also hurtful when people tell us that Amelia is fine or she will do x, y and z. Yes besides her head, she looks "normal" but most of her issues are neurological. Her brain does not tell her body what to do, so she's not even close to crawling. She has cerebral palsy so she is weak on the left side and unable to do things. Despite working with her for a few hours a day and taking her for therapy a few times a week she is still way behind and may never get to where she should be. I have to deal with the heartache of watching her try so hard for something she just can't do. 

 Every step she moves forward she has another surgery that sets her back two steps. She's starting to make gains with her torticollis and then she had a blocked catheter that made her head bigger and weighed it down. She's starting to show some strength in her spine and in a month she will be in a spica cast so most likely after the 3-4 months she will lose the strength in it. 

 Maybe I'm still hormonal. Maybe it's all the stress in our life. Maybe I'm just weak. I try to keep myself busy (in the rare times we are home and Amelia is sleeping) so I don't think too much. I can't stand feeling like this. I can't stand the tears and pain. I will say that seeing this precious little girl smile and hearing her laugh melts my heart. Knowing that all the hurt I have for her she isn't carrying. I love this little angel so much.