Surgery update

I know I haven't been updating like I want to but it is so hard emotionally to write these posts. I want to be writing posts about Amelia running around the park or going down water slides. But instead I have to write about brain surgery. Maybe one day in the next few years I will be able to write about her finally being able to walk. Maybe then I won't cry when I see pictures of kids her age walking around, playing at the park, walking on the beach. Maybe one day our lives won't revolve around therapy and doctors, but things Amelia will enjoy. 

Surgery itself was a success. When the left side of her head was opened up her surgeons were able to shift her brain over so that the bulge she had is gone. This meant her plastic surgeon had modify the plate that we waited 5 months for. Ugh! When talking to us after surgery her PS said, like a proud grandpa, that Amelia looks cute as a button! How sweet that Amelia has everyone wrapped. 

Everything was going well, until the fever started. It kept getting higher instead of lower with Tylenol. Her blood work came back fine, so they weren't too concerned with a fever but with all the blood on her head they were worried that if it didn't drain quick enough then that would cause an infection. There is also concern that the fever is coming from the body rejecting the plate. They did a blood and urine culture yesterday, so far they are both negative. They want to culture again if her fever reaches a certain point. I'm praying they don't have to. 

On top of everything Amelia hasn't had a normal bowel movement. This poor girls belly hurts so bad and she can't push a fart or poop out because it hurts her head. She just can't seem to catch a break at all. 

We have an army praying for her and the prayers have been helping Matt and I keep our calm. We know that Amelia is in God's hands. That being said, it's the hardest thing in the world to watch your child laying in a hospital bed in pain. We still can't even hold her. She doesn't understand why we won't hold her and comfort her, she's just upset with us. I can't help but look at her right now, trying to sleep in this makeshift car seat thing, completely uncomfortable, head wrapped up, IVs in 3 spots, drain coming out of her head, and cry. She's just a little girl. She shouldn't be having her 7th brain surgery (and this isn't her last by any means). I know people mean well when they say she's a fighter and God has big plans for her because of what she's been through, but hearing that makes me want to scream. Until you are sitting in a room, listening to your child scream and cry because she's being taken from you and going to have her head cut open for the 7th time you will never understand. Until you sit here, for the second time in your child's life, watching them helplessly, not being able to hold or comfort her, you will never understand. The hurt and pain that I feel is so great that I can't even function at times. There are days I do nothing but cry because I hate seeing how bad she struggles with little things that should come natural. My heart breaks for this little sweet girl. 

Rescheduling stinks

Ahhhhhhhhhhhhhh!!!!!!

Okay now I feel so much...the same!! 

We got a call yesterday telling us that they have to postpone Amelia's surgery. They haven't even gotten the model of the plate for her plastic surgeon to sign off on and it will take 4-6 weeks to get the plate made after that. Her PS is livid that the plate is not already in his office. 

They want to schedule her at least 6 weeks out but the first available isn't until July 20th. Since we don't know if that is too far away we will get a call Monday to let us know the actual date. 

This stresses me out on so many levels. I was finally coming to the end of my anxiety attacks because surgery was happening. Now I have 6-11 weeks to continue to stress and fret and worry. Joy. 

I am thankful that Amelia is not old enough to understand what is going on because having to prepare her again wouldn't be fun. The bad thing is she will be that much older and it will be that much hard to cope before, during and after surgery. 

I guess that means we can do a few things we didn't think we could because of having to be home bound and because of stitches. Always a silver lining, right?!

So much harder

If you've had the pleasure of speaking/texting/emailing me lately, you probably are wondering what got into me. I'm moody, mean, hateful, cranky, emotional, sappy, etc. This is NOT me. I am not myself. I apologize. This surgery is hitting me really hard. 

I'm not sure if it's because Amelia is older and I know this will be harder on her. She won't be able to be held for a few days because she will have an external drain coming out her head. Until that is removed she can't be moved. That is going to kill her and me. I hate that I'm not going to be able to comfort my little angel. Sleeping is going to be horrible. We have a monster that will only fall asleep when mama is touching her. 

I know when we have to hand her over to the nurses she is going to cry. She is going to scream when they walk away from us. I'm going to cry. That will break my heart and the next few hours will be the longest. Sad thing is I can't even pick her up and cuddle her when we get to see her. 

Maybe it's so much harder because we were thinking that this would be the final surgery until her permanent plate would go in 6 mos to 6 years later. Now we find out there will be more and taking that in is too much right now. 

Even though it's hard for me to admit, I'm not okay. It seems like everything is going wrong at once. She isn't making any progress and is regressing in her leg tone. She is having to get AFOs now. Therapy will be increasing to try to help more. I feel like I'm failing Amelia by not doing more for her. My two people that I have leaned on the most can't be here physically for us (one is ill and the other had work emergency that she couldn't leave) so having to go through this alone (besides Matt) is making my heart hurt. So again, I apologize if I've offended you in any way lately. I'm battling a demon right now. I do think that it's time to see a doctor and once we are given the clear to be out I plan on finding one and making an appointment. Until then I will try to plaster a smile on my face and be pleasant. 

Reconstruction part I

I know it's been awhile since I've last posted and I apologize. Actually, I have written a few posts, but they won't be published. I needed to get my feelings and thoughts out and didn't want anyone to take it the wrong way, tell me I'm looking for attention, feel sorry for me, tell me everything is fine with Amelia or tell me I'm ungrateful. So the best thing to do was to just write it out and leave it there. 

So we got the news from Amelia's PS that surgery will be in 5-6 weeks (this was weeks ago, lol). He said he was going to put in a temporary artificial plate and eventually she will need a permanent one. It is a strong plastic (some big word I forgot), the same that is used in knee and hip replacements. He is using this because the body is less likely to reject this. With our track record we will be praying hard that her body doesn't reject this. He will track her growth and then when he feels she is ready she will have a permanent one put it. This could be 6 months or 6 years. It will depend on her body and her body's ability to accept this plate. 

We were relieved to get this part going. I even thought that I would go back to work since she will have a plate, and I was going to put a whole bunch on my plate to make it work, but I was going to do it. Well, never, NEVER, tell God your plan. He will just laugh and laugh at you. Obviously it was His plan for me to stay home with Amelia for a LONG time. I just hadn't seen it that way...yet. 

We couldn't schedule surgery till we met with her NS the next week. We got a phone call the day after seeing her PS that she needs to come back. I was freaked out. Basically the nurse told us that he was going to have to do something more and on the left to her head and he wanted to discuss this with us so that we weren't blindsided surgery day. Since it's a long drive and she already had a bunch of appointments we opted to just speak with him surgery day. 

We got in to see her NS (which by the way, I LOVE! In 15 minutes we were signed in, taken back, vitals taken, met with the NS and were waiting to schedule surgery). It was there that we were hit with the bomb. Because she was unable to wear a helmet and her head was not able to grow properly and symmetrically, they would have to basically break her entire skull and reconstruct it. Her NS didn't think that her PS would start the process this young and thinks that she will have a few more surgeries before her final plate(s) will be placed. My heart just broke for my little girl  So we went from accepting that she will need 2 more surgeries (not including any for shunt issues) to possibly around 5. AHHHHHHHHHHHHHH

I can't even begin to tell you the emotional roller coaster I have been on. I have had my highs of hoping that she would be able to start actually recovering and maybe we can really move forward with therapies. To an extreme low of hurting so bad that I couldn't make it through an hour without crying.  I have even thought about the fact that these surgeries will be taking place while she is in school. That means she will be bald, scars all over, already not like the other students. So I went from saying I would NEVER home school because I want her to have the social interaction and the resources I can't give her, to saying, hmmmm maybe I need to home school till she is ready and out of surgeries. 

This surgery, just like all the other surgeries, will require around 7 days in the hospital and then a few weeks of being isolated. So you can see how being in school wouldn't work. She can't miss a month of school multiple times. 

This surgery is a week from today (I told ya'll I am really late with this). May 4th, aka Star Wars Day. Her surgery is at 1:00 which totally stinks because she will not be able to eat after 5 am. I am NOT waking her up at 4:30 to eat, so I have to deal with a cranky, hungry little girl. 

Please pray for all 3 of us. Pray for both surgeons and their staff. Pray for everyone else who is praying for this little girl. We know that God has some big plans for her and even though we have strong faith, it is never easy to see your child, a child you prayed for for 12 years, to go through. 

This helmet....AHHHHHHHH

Since the first time we stepped foot into the helmet place I knew this was not going to be an easy journey. I have a love/hate relationship with that place. I love the fact that her helmet not only will help shape her extreme misshapen head, but it also offers protection. I love that the helmet will alleviate the need for surgery. I love that the helmet will help her head grow symmetrically. I love that the helmet could help her vision some. I hate that no matter what time our appointment is we are there no less than 3 hours each time we go. I hate that the helmet shifts all over and bothers Amelia. I hate that the helmet stinks beyond belief. 

When we got her helmet in Feb it was a bust. It was not fitted properly and therefore it could easily be shifted. The first full day in the helmet, while I took Amelia's breakfast plate to the kitchen, she managed to turn the helmet around, suffocating herself. Talk about scary. I couldn't leave her in the helmet. So we went back for another super long appointment. He was able to help it some, but not enough. Back we went. This time he tried to help it some more but also re-scanned her, just in case he needed to get a new helmet. After a few hours it was apparent that we needed a different helmet. These things are NOT cheap and our insurance was not going to cover another helmet. Thankfully he was able to do a warranty exchange and we didn't have to pay for this new helmet. 

Last Friday Amelia got her 4th helmet. Everything looked really good this time. No shifting or tilting, pressure in the right places. I think this helmet is going to do it. Saturday night when I took her helmet off to wash her hair I noticed that her cheeks were really red (sign of the helmet being too tight). That's not a big deal. I will schedule an appointment and have him shave it down just a little bit. Problem solved. Everything else was great. Well I noticed that behind her right ear was red. There has to be pressure behind her ears to hold the helmet in place. Mr Helmet Dude knew that Amelia has a shunt and that her tube runs down behind her right ear. We discussed this at great length. He purposely put the pressure right behind her earlobe so that it wouldn't interfere with her shunt. The problem we ran into is that the helmet will naturally shift. It will shift when Amelia moves her head and it will shift when she tries to pull it off. This is natural and only shifts a little bit. Well that little bit is too much. When the helmet shifts it pushes on her shunt tube. Just a gentle touch is okay, but with her torticollis her head tilts to the right and puts a little more pressure on it. 

What does that mean for her now? We have been advised to keep the helmet off her. I believe that the shunt tube was being pushed hard enough that it wasn't draining. When her helmet came off her head was hard and full. After about 2 hours it was back to spongy. So keeping the helmet off will make sure we don't have to do anything with the shunt at this time. But we have to do something. The purpose of the helmet is so her head grows symmetrically. Without the helmet the brain will only grow out the place where there isn't a bone. The rest of her skull will not grow. Her eyes and mouth will grow to the right and not the left. This will mean lots of plastic surgery to try to correct the issues, if they can be corrected at all. We can't get a plate put in her head until she is at least 2. We have a long wait for that. What do we do?

We have an appointment on Wednesday with her plastic surgeon and neurosurgeon. We will discuss the only option we have left, surgery for a temporary plate. This breaks my heart. Amelia has been making so many gains with gross motor skills. After surgery her biggest setback is gross motor. So it is highly likely that after surgery she will not be crawling, standing, rolling, or walking in her walker. After every surgery it has been about 3 months before she starts to regain these skills. She will gain them long enough to use them for a few months before her next surgery. This is so frustrating. As I said before, it seems like when we take 1 step forward we take 10 steps back. We were on the road to start helping her with her walking. Now we will be back to where we were before her hip surgery. Poor girl. She loves being mobile. She loves crawling around the house. Even more so she loves getting in her walker and going all over the house. She goes in every room, knows how to turn around, knows how to back up if she is stuck. It is so awesome to watch. After the surgery she will have an external drain put in and that means we can't even hold her to comfort her. She won't understand why we can't hold her. She will be so upset because she will feel like we are abandoning her. She won't understand that she has to stay in the hospital for a week. That we don't get to come home and play with the dogs, or go to the zoo, or go to Kroger for food.  

When she has this surgery we will request that they shave her whole head (otherwise they will just shave the entire right side). This is so sad for us. She finally has hair that covers those awful scars. Looking at her head (at least the front left side) I don't tear up because of everything that has happened. Now we will have all those scars and stitches looking us in the face. The back of her head that is completely flat will be made very obvious. Yes, those seem like petty things to think about, but it hurts. It brings back all the horrible memories of when it all began. How I felt so hopeless sitting in my hospital bed, a mile away from my little angel. That the first picture I really got to see of her was of her head shaved, stitches all over the entire right side and across the back. Now I get to see this all over again. For the 3rd and not last time. Yes her hair will grow back, but that doesn't help with the pain I feel. 

I have been a wreck since finding this out yesterday. I just want all this to be behind us. I want Amelia to make gains in gross motor, fine motor, and verbal skills. I want her to retain those skills and not lose them because of yet another surgery. My poor sweet little girl. I don't understand why this is happening. I don't understand what God's plan is. All I know is that I have to keep my faith and trust in Him. The prayers help me feel peace and calmness, but right now the only thing I feel are warm streaks running down my face. 

Please keep us in your prayers. I hate asking for prayers for me when Amelia is the one who needs them, but right now all three of us need them, along with Amelia's surgeons. 

And she's off!!!!!

Well it's official, we have a crawler! I'm in tears writing this. This is something I never thought I'd get to say. She's been crawling in circles for a long time. Back when she had her spica cast on she was moving in circles. But now she's going forward!! 

For the past couple days she's been just going back and forth on the carpet. Today she decided she wanted my slippers, then the dog bones, then the dogs water bowl in the kitchen. Daddy put the baby gate up (we finally get to use it for its purposes and not the dogs) to the kitchen. It brought such joy to my heart seeing her going all over. She's army crawling (well, without much help from the left arm), but does a good enough job getting where she wants to go. It's a lot of work on her part and she tired easily from it. I know for PT we are supposed to do a lot of standing (which we are) but I'm too excited to see the crawling, so we do that if she's wanting to. 

We've been practicing standing and just the past couple days walking with her. She is doing amazing with the walking. She went from not moving her legs at all, even if we tried to move them, to taking steps all on her own. So proud of this amazing little girl!! 

One step forward, ten steps back

Just when you think you have the swing of things down, all the appointments, home therapy, helmet therapy, patching the eye, how to tell the difference in an illness and a shunt malfunction, things change. Despite Matt and I both being extremely ill we went to the neurodevelopmental physician. We waited 6 months for this appointment and we weren't going to wait another 3 months to go (I called and that is when the next available appointment was). I will be honest, I went in thinking that despite everything this child has been through and is going through, she was doing well. I thought that things were progressing well. Boy was I wrong. I can blame the flu, but the reason I left there feeling nauseous was because of what we were told. 

Lets start with the eyes. We already knew that her right eye was crossing in. It wasn't getting any better with patching so we are patching now for the purpose of not losing sight in that eye. We patch the left eye for 4 hours a day. Well what we didn't know (well I asked her ophthalmologist at her last appointment) was that she has what is called visual neglect to the left. Basically she doesn't have peripheral vision on the left side. So now we have to add vision therapy to her busy schedule of appointments. I don't know how I am going to work on the left eye when that eye is patched for 4 of her waking hours a day. 

We knew she had cerebral palsy and knew that it affected the left side of her body. I thought she did well with her leg and that her hand/arm was improving. I was wrong. Her arm and hand are really bad. This is something that will have to be addressed with restraint therapy. Basically in OT (and at home) her right arm will need to be restrained so that her left arm has to do everything. This means we will be moving back to OT every week. There is a chance that PT and OT will have to increase back to twice a week, but that will be discussed this week at therapy. I will say that today during lunch I let her drop 8 pieces of food to the dogs all because she did so with the left hand. This was big for Amelia as she doesn't really touch food with her left let alone pick it up and move it over the side of the high chair to drop it. 

Her left leg isn't as it should be. The type of CP she has is spasticity. It is a tightness of the muscle. Right now Amelia doesn't appear to be in pain because of this (there could be a reason) but it could cause her pain in the future. Her left leg is too tight. Both of her ankles roll in. When she sits she leans which isn't good. So to help with this we have to purchase a stander. Basically it is a contraption that she is strapped into in a standing position. She will need to be in this for multiple hours a day once she gets this. When we go to therapy next week we will discuss this. Once she's in this stander and doing well we will have to purchase a walker. Basically the same thing as a stander but with wheels. Because they are built for the individual child these can't be rented and they are well over $3000 each. IF, and she stressed the IF part, she can walk Amelia will most likely have a limp. She said it is too early for her to tell if she will be able to and we have a bunch of therapies to try first. There are also medications that we can put her on to help with a few of the issues (or try to help with them) but she thinks that we need to exhaust therapy first. I agree with that. Let her try to build the strength on her own. 

Amelia has sensory issues. More so on the left side, but it affects both. This could be the reason why she never seems like shes in pain despite all shes been through. She may not understand or feel the pain. This is not a good thing. We will be working more at home with sensory therapy. Letting her experiment with hot and cold, rough and soft, prickly and smooth. This out of everything we will have to do will be something that is fun for her. We already work on this, but need to amp it up. 

When I told her doctor that she seems to be smart when it comes to things like mimicking and understanding, she told me not to get used to it. Decreased mental ability is expected with a brain injury like she sustained as well as behavioral/mood. We are already dealing with issue of her having behavioral/mood issues because of her anti-seizure medication, so this should be fun. In the past week or so she has stopped crying and is now just screaming and shrieking. I figured it was an age thing, but I guess this is expected for her. The intellectual part I'm not worried about since facebook had the meme about if a mother has a big butt her child will be smart. Amelia is bound to be a genius with only half a working brain :) All kidding aside, I am already thinking about her IEP and her 504 for school. I am wondering what would be the best situation for her when she starts school in 5 years and 6 months. I know that time will tell me what she will be able to do and what I will need then, but I am a planner and need to take care of my baby. 

I know people will say "oh she's still cute" or "don't worry, she'll be fine" or "she's at least happy" or "be thankful for what she can do". I know they don't mean to be, but those comments are hurtful. Yes she is the most beautiful little girl I've ever laid eyes on. In her daddy's eyes and my eyes she is perfect. But that doesn't make going through this any easier. Her looks have nothing to do with the daily struggles she faces. I know that doctors are not God and they don't know everything. I know that they are only human. But they have lots of research and schooling to give their opinion and I value it. I take their dx and I do everything that I can to help Amelia defy those odds. That being said, she will never be fine. She will always have a condition that the only option to help it is brain surgery. She will always have CP. She will always have nasty reminders all over her body from all the surgeries she has had and will have. She was a happy baby. She went with the flow, but that is because she had to. Now she isn't happy most of the time. She is frustrated because she can't do things that she sees other children do, like walk, or crawl. She wants to get around but she can't and is unhappy about it. She has to wear a patch on her eye for hours a day. She has to wear a helmet 23 hours a day. She has appointments or therapy almost every day of the week. That isn't something to be happy about. Matt and I are beyond grateful for our little girl. We thank God every day for blessing us with her after we prayed for over a decade to have a child. We are thankful for the doctors that were put in her path and saved her life. We are thrilled with the progress she has made. That doesn't make it easy to watch your child suffer. Think about when your child has a cold or an ear infection. Think of how helpless you feel and how you just want to make your child feel better. It doesn't mean you aren't thankful for all the healthy days. It just means you are a caring parent who doesn't want to see their child suffer. We are ready for whatever God chooses to do with Amelia, but it still doesn't mean our hearts can't hurt for her. 

So this is the life of my 14 month old child:
*Helmet 23 hours a day
*Eye patch 4 hours a day on left eye
*PT, OT 1 hour a week at clinic (could be increased) and lots of home therapy
*Vision therapy on left eye (right now we are working at home until we get an appointment with the therapist. Will probably be the same as PT and OT)
*Hip brace for naps and bedtime
*Stander for multiple hours a day
*Sensory therapy for at least an hour a day
*Countless appointments a week

Pray for us please!!