Eye surgery

Back on June 27th Amelia had surgery to correct her amblyopia. He went in and tightened the muscle on the left side of her eye and loosened the right side so that her eye would be straighter. With her hydrocephalus her eye will most likely start to turn out so he didn't want to move the eye exactly center so that we can possibly avoid another surgery in a few years. 

Amelia, of course, did amazing. There was a very tiny amount of swelling for a day and some redness but that's it. Her eye did itch (they say it feels like she had sand in her eye because she had 4 stitches on her eyeball) and that was the hardest part, stopping the itching. 

I'm so proud of Amelia. This little girl has been through so much and each obstacle she is thrown she takes it like a champ. I wish I had half her strength. She keeps me grounded and focused on what's important in life. 

Super boots (casting) and a baby

Sorry for the lack of updating. It's been a long few months. In January Amelia had her feet/ankles casted for 5 weeks. It was supposed to be a little longer but over achiever decided she wanted to show off and made great improvements and got out of them early. Her feet are now closer to being flat and that means she is closer to standing on them solo. Now we are working on her hamstrings. They are really tight. She has to wear knee Immobilizers to help stretch them. That isn't working out the best so this is a slow process. 

Amelia has been a champ through it all though. She actually liked the casting and called them her super boots! Her therapist thought it was so funny because no kids actually like being casted and Amelia got excited about it. 

We still don't have a compression suit as they've screwed it up. It's so frustrating. I just wish we had everything we needed all together so that maybe just maybe we could see if standing/walking would ever happen. It is so frustrating and nerve wrecking to not know and have my emotions on a rollercoaster. 

One reason I've been MIA is because just about 2 weeks ago Amelia became a big sister! She has a baby sister Charlotte and just loves her to pieces. The end of the pregnancy was rough on me and so poor Amelia had to deal with the consequences of it. Now she's still dealing as I had a c section and can't do much with her, and I just got out of the hospital because I developed postpartum pre eclampsia. Talk about a horrible experience. 

But we are all home now and trying to develop a routine. I still can't do much therapy with Amelia because I can't lift her, but I'm trying to do the best I can with both girls. 

Mapping out a plan

Today we went to the developmental pediatrician. I really like her. She knows her stuff and is willing to spend the time with us and give us what we need to help Amelia. 

Amelia was put on medication for her spasticity. I will start this in the morning so I can monitor her. She will be on an extremely low dose to start and then will be monitored over the next couple months. Of this low dose I will only give her a third of what she should be taking so I can watch for seizures as this puts her at a much higher risk for having them. I'm obviously praying for no seizures and that this medication will help limber her up some. 

She will begin serial casting as soon as we can. Both her feet/ankles/lower leg will be casted for 4-6 weeks. Hopefully we won't have to go longer than that. This will be another joyous time for us with casts and sponge baths and finding clothing to fit. I literally just bought all new clothes for her because she skipped 24 month clothes. Ugh 

Amelia is a perfect candidate for selective dorsal rhizotomy. This is a neurosurgical procedure where thankfully her NS is very skilled at. He will go into her spinal cord and interrupt the nerve that is causing her spasticity in her. This is a permanent and scary procedure. They don't even think of doing this surgery till 3/4 but it has to be done before 8. In the next year or so we will see where Amelia is at and will decide if she's ready for this surgery (if this is something Matt and I want to do). 

Her DP was very, very impressed at Amelia's speech and her cognitive skills. That made me proud! She may be lacking in gross motor skills but she's one smart cookie! 

Okay on that note I may have to go make the baby some cookies hehe

During this appointment Amelia said to the resident (who promised her a sticker) I want my sticker please. This impressed them both. Then she decided to take her shirt off while she was playing with the Doctor. She's such a hoot! Love my little monkey butt (her new phrase). 

Orthopedic Appointment

Look at me go!! Twice in a week! I must be not sleeping or something lol. We had an appointment with Dr Mencio, an orthopedic doctor today. Things went better than expected, but of course we left with our heads down. Poor Amelia had to get an X-ray and I couldn't be in there with her. I sat outside the door crying as she yelled mama, mama, mama. Times like these I wish she never learned mama. Hearing her cry would have been bad enough, but her calling for me is rough I tell ya.

He looked at and felt her spine before really speaking to me about it. He said based on just looks and feel, he would dx her with scoliosis. My heart broke. Then he showed me the computer monitor that had an image of her spine up. He said he had to look at the name twice to make sure they didn't put the wrong one in her chart. Her spine is perfectly straight. I may or may not have shed a tear or two. He said that right now she has a lot of trunk control issues and that is what is making her spine appear to have issues. We need to work hard, as we currently are, to make sure that doesn't change.

He then looked at her ankles. Yes, she does have a lot of tightness in them. Yes her Achilles could be altered to help. The form of cerebral palsy Amelia has is spasticity. She's extremely tight. I watch how easy it is for babies and toddlers to move around and bend their bodies. Amelia can't do that. The movements she makes takes a lot of effort for her. There are a few treatment options to try with her. There is surgery on the Achilles. This is something he wants to avoid right now. Doing that will help a little, but she will still have the tightness and it won't be that helpful. We could cast her feet. They would be flexed and casted for however long he saw fit. He doesn't want to do that right now. He thinks it would help stretch her and give her what she needs, but there is a very high chance that while casting her she would pop her heel up (the issue we are having with her splints and orthos) and that would cause more harm than good because she would have sores on her heels that would need to heal before anything else could be done. Another option is Intrathecal Baclofen Therapy. What the heck is IBT? It is where they place a pump in her spine and that pump would infuse baclofen directly into the spinal cord. This would help her body loosen up. This is a scary option for us. That would mean another surgery, another foreign object in her body. More things to worry about. Thankfully Dr. Mencio decided that he doesn't even want to look into this route. With Amelia having a shunt and having hydrocephalus and having chairi malformation he doesn't know if she would qualify for the IBT pump. If it comes down to her needing one we would work with Dr. Naftel on this along with a spasticity specialist.

Well there are all these options but none of them he signed off on. So now what? He wants her to try oral medication that is specific for spasticity. He wants to continue trying night splints and AFO's along with stretching and medication before he pursues anything from his stand point. We have an appointment with Amelia's developmental pediatrician on the 18th. If she feels comfortable going with Dr. Mencio's suggestions she will prescribe the medication and we will begin. If she doesn't want to go that route than we will have to see a spasticity specialist who will prescribe the medication and monitor Amelia.

Amelia has made some great progress with her muscle tone. She is getting on her knees from any position. She actually prefers her knees over anything now, so we have to watch her on her sitting. We took a huge step forward with those gains (starting to pull to stand, getting on knees, crawling on quads - even if her legs are spread) but then we took an even bigger step backward with the tone in her feet, ankles, legs, tummy. So that is what we will be working on. She will be getting new AFO's soon. She will meet with the orthatist on the 12th to get measured. So hopefully those will be in Dec 3rd. She was also remeasured for a compression suit a few weeks ago. I thought that would have been in by now. Maybe he will bring it next week. I am hoping and praying so hard that this medication will help her tremendously and we will start to see some gross motor gains in the next few months.

I also spoke with the NP from her NS office today. She said that it is common for the tube to move as her skin hasn't fused to her plate yet. So we are just watching that and making sure no other issues arise.

Keep the prayers coming please. It is so hard to watch her struggle and hurting. Thanks

A walk, a care bear, a normal head

It's been a while, and I am sorry about that. Life keeps getting in the way. Every time I have a few minutes free I am finding something that needs to get done, like paying bills, or decorations for a special someone's upcoming birthday party. So what has been going on in the past 2 months?

Amelia (and her family and friends) participated in the Hydrocephalus Awareness walk. She was the leader of Amazing Amelia's Army. The motto was "We are in this fight together" and it couldn't be more true. Every battle she has to face, she has an army of people behind her fighting for her too. I love that she has so much support from all around the world. I wish we could just give everyone a big hug. Amelia was so excited to show the world that she was walking with her walker. The biggest supporter for her was her NS Dr. Naftel. He really is an amazing person. You can tell he holds a special place for his patients in his heart. I honestly think Amelia holds the highest honor as she was mearly 16 hours old when he met her and 20 hours old when her life was in his hands. That is his girl.

Speaking of Dr. Naftel and surgery, since Amelia's last surgery we have been blessed by a "normal" head. Normal for us means scars on almost every possible place on her head, hair slowly growing in, misshapen, and fluid free. That is the most important part, fluid free. We had a scare Friday night, her tube slipped and was down by her eye. We didn't know the tube slipped and thought that it became disconnected and move forward. We will be waiting for an appointment time and date tomorrow morning. I don't think the tube should have moved, especially after over a month. So I am anxious to hear what Dr Naftel has to say about that. She also has an appointment with a new specialist regarding 2 different issues (new ones) and once we are given more information on that (Tuesday) I will update everyone.

Halloween was a hit with Miss Amelia. She was the cutest care bear ever. Everywhere we went she was complemented on her costume! She mastered saying Trick or Treat, Smell My Feet, but instead of saying it to the correct people she just said it in the car, or outside waiting. Little snot!! She did have fun watching kids in their costumes and had fun picking candy up and putting it in her bucket.

Halloween did make me really sad. It is really hard to watch all these kiddos her age, younger, older, running around in their costumes. Walking to the doors and saying trick or treat. I was hoping that the coping with her not walking would get easier, but the closer she gets to 2, the more she realizes she can't do the same things and is upset by it, the harder it is. 

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!!