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. 

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.