Bye bye rib graft

It makes me so sad to announce that the ribs in Amelia's head are officially being absorbed. I knew this, just didn't have official confirmation from the plastic surgeon. 

Matt and I discussed what we would do next and we decided not to do any more grafts. We are going to do an artificial plate. We need to wait till she is at least 2 to do it. Once older than 2 the skull is 75-80% finished growing. We don't want multiple surgeries so we will wait. I just hope Dr Kelly doesn't retire before then. I actually said "you're old, hope you don't retire by then!" I was so embarrassed that my thoughts came out my mouth. He laughed and said at least I said it. Most just think it! 

This means that Amelia will have to be in her helmet till then (and possibly awhile after the surgery). It really stinks. She won't be able to be a kid. No playing outside, no swimming. Surgery will be when she will really feel the pain after and she won't be able to do anything for a few weeks after surgery. My heart breaks for this little girl. 

It would take a miracle for her bones to stop being absorbed and for them to start growing. I know God has already blessed us with multiple miracles with her but I don't see this happening. I still will hold onto faith, but need to brace myself for the furture. This affects all of us in many ways. I won't be going back to work anytime soon. We talked about possibly trying to have another child but I don't want to be pregnant or with a newborn/infant while Amelia has this surgery/hospital stay/recovery. Waiting at least 2 years isn't something we want to do as we are both getting up there in age and we would like the children to be close in age. But, as always, we will turn to God and follow his lead. 

Amelia was dedicated today

First off, a big happy birthday to auntie earmuffs (aka auntie Lisa)!!! 🎁🎈🎂

Today we dedicated Amelia. This a big thing for us as parents. We are telling family, friends, and most importantly God that we are going to raise Amelia in a home that loves and serves the Lord. This may not sound like a big deal to some, but it should be. God gave us Amelia. He gave her to us to raise to love and know Him. We accept that and are going to try our hardest to do just that. 

The message today at church was about letting others see Jesus in us. Pastor Mike preached about how people want to serve God in their own time and way. That if God wants them to move they will move to the next town. God wants them to have a different job, they say naw. That really got me thinking about Matt and my journey. We felt God leading us down here to Tn. That was a huge move, especially for me, away from all my family. God put it on my heart to teach. And just like the bible states "he gives and takes away". No sooner I felt at home and like I was where he wanted me, he took that. He wants me home with Amelia and that is where I am. It is hard, getting easier by the day, but God has never left me. I hope that when people look at me they can see Jesus. I am nowhere near perfect. I am a sinner. I have the love of Jesus in my heart. I desire to follow Jesus and live my life for him. 

That's what this dedication is all about. Letting not only the world see me live for Jesus's but having Amelia see me live for Jesus. Raising her to know that life isn't what we want it to be. Life is what God gives us. I don't know how God wants to use me, but I will someday. I will know why I have had to go through all these struggles. 

Hydrocephalus Walk!!

Yesterday we participated in the hydrocephalus walk. We had some family walk with us which was awesome. It feels good to know that Amelia has support. We had tons of people donate to HA for the walk. Those that wanted to show support for Amelia but couldn't be there wore blue in her honor yesterday. 

 The Nashville walk brought in over $20,000. This money is important for research purposes. People with hydro have many brain surgeries through their lives. With the money raised the HA is involved in trying to find a cure for hydro. Right now they are working on how treatment can be less invasive. How they can find out if shunts are working with less radiation. It's amazing to see the progress HA has made in the past few years. Hydrocephalus used to be a condition that mothers were told to abort over. Now with more awareness people can see that hydro isn't a death sentence. There is no cure for hydrocephalus but there is treatment. Brain surgery sucks, but it beats the alternative. We are hoping to see many more advances in the years to come. 

Thank you to everyone who has prayed, donated, wore blue, walked, and loved us during this. Know that Amelia is not fighting this condition alone, there are millions living with this condition. So you aren't just supporting Amelia, you are supporting all of them! 

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.