A little rant

Since I am already crying, I might as well go ahead and write this post. I understand that a lot of people, most people, do not even come close to understanding the daily struggles Matt, Amelia, and I have. I know some people think they are being helpful, or maybe they don't, they just want to put words out there and don't care what they mean. These words can hurt so bad. Especially when they come from a parent that has never had to deal with any type of struggle remotely close to what we have been dealing with for 22 months.

I have no idea why anyone in their right mind, who knows any part of our journey the last two years, would say that Amelia is fine. Just the fact that she is 22 months old and can't even pull herself to stand consistently, or stand on her own should be enough to show you that she's not fine. She has been through 9 brain surgeries in 22 months. Again, that isn't something a child that is fine goes through. Please quit telling us that our child is or will be fine. It is not helpful in the slightest. What really gets me is when it is a parent who is literally crying and acting like the world is ending because their child has a cold.

Another thing that really upsets me is when people say "but she's so happy." Yes, my child knows how to smile, she enjoys certain things, but that doesn't mean that she's not hurting. I put a smile on my face daily because who wants to see someone crying all the time. When asked I always say I am doing well because who cares about me. Amelia must get that perma-smile from me. Her smile can bring joy to anyone and I am glad she can do that. But please don't mistake her smile for her being a completely health, normal child.

I was just reading through some comments on a post on FB I did a year ago (that is what stemmed this post) and one comment, from a friend I have know a very long time, made me want to drive 9 hours to punch her. Yup, I said it, I wanted to punch someone because of what they said. A year ago we were told that Amelia would need to be in her helmet until after her 2nd birthday (this was obviously before all the issues with the helmet and the shunt). I, with every right, was upset. She had to be in the helmet 24/7. So I posted about how she wouldn't get to enjoy her childhood because she couldn't go outside with the helmet when it was remotely warm because the helmet is extremely hot and causes a horrible heat rash. She couldn't go swimming because she can't go in the water with her helmet, etc. Well this person comments basically that I am being way too dramatic and just need to improvise and do a pool in the basement or whatever. Really? Because first of all we don't have a basement, second, if we did she STILL couldn't go in a pool because she has to wear her helmet 24/7. UGH

 Before you accuse me of being dramatic, please put yourself in my shoes.  With everything this child has been through Matt and I are trying to give her as normal a childhood that we can. It's not easy. We struggle financially, when we have money it's because Matt is working and that gives us zero time together, and the time we do have is usually at the hospital or doctors. People have NO clue what it is like to have a child that is almost 2 and can't walk. To go to the park or the zoo or the mall and see children way younger than her walking around. I can't even put into words the pain I have. It's not just pain for me (and my back from carrying an almost 30 lb child everywhere) but it's for this sweet little girl who wants to go and play. Seeing the hurt in her kills me. Most people have never seen me cry, but let me tell you I have had to stop 8 times to wipe my eyes and blow my nose right now. I hurt. Your words make me hurt even worse. I don't care that she won't remember this time, I will. When your weeks are filled with PT, OT, PT, specialist appointments, therapy at home, etc  you want to do something that will bring some joy to your child. Again, until you have walked a mile in my shoes, don't judge me.

One last thing (It is all I can really get out right now and I am hurting, frustrated, and angry). Amelia is NOT SICK. The list of all of her dx are medical conditions. You can't catch cerebral palsy from being around her. Your child will not all of a sudden not be able to use part of their body. Yes, I have been told that is why people don't want to be around us. Honestly, Amelia hasn't even really had a cold that could be passed to someone. She did have some congestion a few months back but it never did turn into anything. I completely understand people not wanting to be around us. It is not easy to be friends with someone with a special needs child. But don't leave my child's life because you are uneducated on her medical conditions.

I know there are not a lot of followers or people who read this, and that's okay. I just need to get my feelings out. There are days I just want to shut off the internet, turn off the phones, lock the doors and stay in forever. I want to protect my baby from the glares and stares from people. The comments I get about my kid being too old to be in a stroller and she should be walking. The comments about how I am raising a lazy child. But I do what I do best, throw on a smile and keep pressing on because Amelia needs a role model. Someone that will show her to not let anyone in the world knock you down. 

Off she goes!!!!!

So I don't want to just include all the bad stuff. Here is a happy post. A few months ago Amelia got her walker in. After a couple days this little warrior decided she has it, and took off walking on her own in it. Her therapist was so shocked. She said that walking on her own wasn't even in her 3 month goals. This girl is a rock star. I wish we had a bigger house so she can move around more. With all the hills I can't just take her outside around the neighborhood. Hopefully soon we will start taking it to stores and to the park where there is a walking trail.

Not only did this little ball of awesomeness start using her walker, but just a few weeks ago she started pulling up to stand. It was such an awesome site to see. She gets on her knees with such ease now. If we can only get her to keep her knees together when she's on them. But progress is progress. She is making some progress getting into her anywhere chair. We aren't quite there yet, because she refuses to pick her head up and since it won't go through the back of the chair, she gets stuck. But we are making some gains with gross motor skills.

I couldn't be any more proud of this little girl. She has been through so much, but she has so much to prove. Her NS was talking to me about how he has never, in 7 years of training, in all his schooling, never himself, nor has he known any NS to operate on a child less than 24 hours old. He refers to her as the 1% the textbooks warn you about. She continues to amaze everyone! God is sure working miracles on her!

This picture was taken back when she had hair still!! 

3 surgeries, a plate, and a new dx

So, I've been MIA for awhile and I am sorry. I have come on the computer to write this and the tears start flowing and I have to leave. Why is it so hard to write about your day/week? There have been some major happenings with Amelia in the past 7 weeks. 

July 30th Amelia had a big surgery. She FINALLY got a plate put in. The surgery went better than expected because her PS and NS were able to shift her brain over and she doesn't have a bulge anymore. This is big because now she won't need as many reconstructive surgeries as anticipated and we can wait a few years before needing to address anything. Her head is actually indented, when it's not filled with fluid. Yes, you read that right. 

Amelia had a rough time after her surgery. Normally she is in the PCCU for 24-36 hours and then we are in a regular room. Her head wouldn't quit drain blood for almost 5 days. They finally removed the tube because it was a bigger risk keeping it in. For over 5 days we were not allowed to hold our child. That was rough. I wasn't sure how I felt about them removing the drain, but needed to hold my sweet baby girl. The fluid pooled on the top of the plate, but her NS assured us that it was fine and normal and in a few days it would go away via the shunt. 

We were discharged on Wednesday, Friday we were in the ED.  She kept running a fever and it wouldn't break. They were pretty certain it wasn't a blood infection or CSF infection but because she had something going on she was admitted. We saw her NS Monday morning and she had surgery that evening. He did a shunt revision, replacing the catheter that goes into her head. He also drained her head. Things seemed to finally be looking up for us. 

We went home Tuesday and that evening Amelia got sick for the first time ever. She was lethargic and not herself. We watched her and by morning she was doing better so we just kept watching her. A week passed and her head finally started draining on it's own. It was pretty much completely drained for a few days and then all of a sudden it just plumped back up. Her NS was in Europe and unless it was an emergent matter they wanted us to wait for him. Amelia is such a rare and unique case it is better, even for just a shunt revision which is a common thing for NS, to have the person who has been with her since the day she was born. 

So we waited, and waited. She had a CT scan on the 1st of Sept and we were scheduled to see her NS on the 10th. When we saw him he already had her being scheduled for surgery for the 16th. He changed the setting on her shunt since her ventricles are so small in hopes of increasing the fluid that goes to her shunt rather than coming out and sneaking on top of her plate. He we hoping that would do the trick. If not, surgery. First goal was that the shunt wasn't working. Then it would be an easy fix and he would know the problem. If the shunt was working then he would put a tube on top of the plate and tie under the shunt so the fluid can drain straight down. Worse case is that none of these things work. Then he will have to go in, with her PS, and remove the plate, figure out where she's leaking from, try to fix that, replace the plate, and pray that works. I am glad there are plans just in case, but praying we don't need them. 

Surgery was yesterday. She did great. Her catheter wasn't flowing as it should have been, not completely blocked, but on its way. So he replaced that. He also doesn't want to be back in the same situation in a few weeks, so he put the tube on top of her plate and tied that in. We are now praying that there will be no more fluid collecting. The longer there is fluid there, the longer it will take her skin to stick to the plate and do its job. This morning there was fluid starting to build, so we have to wrap her head all day and hope that it pushes the fluid out. 

This little 21 month old precious girl went through 3 brain surgeries in 7 weeks. That's more than anyone should have in a life time. The surgeries are starting to get to her. It's taking longer to recover. I am hoping that she is going to be back to herself soon, because these past 7 weeks have not been fun. We do try to do things with her, like go to the zoo (where she was kissing a goat lol), but it's hard when she doesn't want to do much. 

On top of all the surgeries she was also dxed with chiari malformation. Now this is a condition that a lot of people have, but would never know unless they got a MRI. For Amelia, she has chiari I, which is what is common with people. Hers has just developed, as she has plenty of MRIs to look back at. Right now we don't need to do anything with it. Basically, her brain is starting to grow down her spinal column. Since hers is just starting no surgery is necessary. We will continue to monitor it. Hopefully with shifting her entire brain during her plate surgery will do enough to help maintain this and it will not progress to a higher level. 

So that has been our past 7 weeks. Lots of time in the hospital, lots of cuddles (or cuggles as my bug calls them), and lots of Oh Maria from Sister Act. Yes, my child loves that song. She refuses to really watch tv or movies, but put that on and she sings and claps with them. She sings along, hits long notes with them, double claps with them. It is so cute!! She also will pray now on her own. "Dear God, thank you food, mama, daddy, help walk, amen" Sometimes when she is really hungry it is "Dear God, walk, amen" I so love this little girl.