Hip surgery

So today is the day. We got up early (who am I kidding, I barely slept), drove to Nashville, got checked in, went through all the pre-op stuff and they took my bug away. When I see her next she will be in a purple spica cast (I choose the color this time!) 

There is a chance that she won't need to have the surgery and that he will be able to pop her hip back in. Now we all know my luck and know that Amelia inherited that from me, so I don't anticipate to be called back in an hour and go home today. I anticipate a call in an hour saying they are starting surgery and it will be a few hours. I prayed and know that it is in God's hands. I kinda wish her Dr didn't tell me that she may just need to be popped in because I know that's what I'm hoping for and I know when it doesn't happen I will be heart broken. Based on our appointment with him back in June he was pretty sure that she would have to have open reduction surgery. Again, I'm praying for comfort in this. 

Well here we are an hour and a half after we left our sweet girl. We just finished talking with her doctor. He was able to push the ball back in the socket without having to go in a scrap and cut her ball and reattach it. He did have to make a small incision on her upper thigh to loosen a tendon but that's it! The best part is that she gets to go home today!! I can't wait to go see my bug in her purple cast! 

Thank you God for letting her ball go back into her socket without the need for surgery!! 

Happy Grandparent's Day!

HAPPY GRANDPARENT'S DAY!!!

Today is a rough day for me because my parents aren't here to share Amelia's love. But Amelia does have some special people in her life. I am so glad that my Grandma is here to see Amelia. Knowing that she got to see Amelia and how much she loves Amelia just melts my heart! Amelia loves her Busia!!!

There are two special people in Amelia's life that even though they are not her real grandparents they might as well be. GAV and GUB (Great Aunt Vic and Great Uncle Bruce...but I guess you can substitute Great for Grandma/Grandpa hehe). I sometimes wonder if GAV loves Amelia more than I do! Knowing Amelia has her in her life is the best feeling in the world. I know if my mom were here she would love Amelia just as much GAV does. 

Even though Amelia doesn't have many grandparents or great grandparents she sure is a loved little girl!! 

This child is amazing!

I am always amazed by Amelia. I love that through everything she has been through she has a smile on her face! The thing that amazed me this week is her therapy evaluation. 2.5 months ago we walked into the rehabilitation office and were told that Amelia, 6.5 month old Amelia, has the developmental skills of a 1 month old. I knew she wasn't where she needed to be, but that was a shock that she was so far behind. I guess I should have known as she didn't even know her toes existed! 

Tuesday Amelia was evaluated in PT and in OT on Thursday. We wanted a baseline for when her cast comes off (hopefully November 20th). Being so far behind and going in this cast is not a great thing to be going through. The next 3 months will be spent on arm strength, hand-eye coordination and hopefully some upper body strength. She is really weak in the left arm and doesn't even want to push up on it most of the time, so that is something we need to work on. 

PT's eval was basically her neck tilt from the torticollis and core alignment and hip rotation. OT is where her motor skills were put to the test. Amelia was so tired going into therapy. But she did try, for the first half anyway. She started to fall asleep during the second half of the evaluation, poor bug!

Are you ready for me to spill the good news yet?!!! So my 9 month old, brain damaged child tested at 10 months in fine motor skills!! I was floored. I knew she was making progress, but not that much!! You go little girl!! Mama is so proud of you! Official testing for gross motor skills put her at 7 months, but that is when she fell asleep. Her therapist said that she is more like 8/9 months!! YAHOOOO!!!!!!!!!!!!!!! No she isn't crawling (see above with no upper body strength because of the CP) and even though she is trying more and more to sit on her own, she isn't there yet. She does do a good job sitting supported though. 

I can't tell you all the emotions that went through me after that session. One thing that bothers me the most is that she doesn't do things like normal children (sitting, crawling, etc) but I know now that she is playing like she should be, and that she can do things that she should be doing! 

Tuesday is the hip surgery and I will warn you that there will be some sad/angry/hurt posts coming up. The surgery isn't going to bother me (heck after 5 brain surgeries a hip surgery is not going to be so bad), it is the cast. If you saw this little girl and her love for jumping you would feel my pain. I just hope that these next few months she doesn't lose that smile. Because I don't know what I will do :(

9 months old

So I started this after her 9 month check-up almost a week ago. Wow, I'm horrible at this blogging stuff!! 

It is so nice to have a normal appointment. Most parents of 9 month olds take their child to the doctor. We are in the norm here! 

Amelia weighs 19 1/2 lbs and is 28.5" tall. Her weight is the 75th percentile and she is 80th for height. I have no idea where she gets the height from. I'll take credit for the weight but not the height. Her weight/height proportion for 9 months is perfect at 50%! So nice to hear some normal, good news. I'm not starving her and despite a lot of people who have no filter, I'm not over feeding her and she's not fat. So 😝

I noticed a while back an issue with her lip. I didn't know if she was lip tied or not because she didn't have top teeth and I didn't know what to look for, but didn't think it was normal. Well it's not. She is lip tied. For right now we are just going to wait it out. Most kids end up falling and busting it open so why have the surgery if we don't need to. She is Matt's child so it's highly likely she will bust it open and sooner rather than later. 

Amelia did impress her doctor with her grabbing skills as she grabbed the protective cover off the tool she uses to look in her ears. She did this twice before she needed her arm held down. Auntie earmuffs would be proud. She doesn't do well with doctors. 

We are all set with her pediatrician until she is a year old! Once things from surgery settle down I will make the appointment. 

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.