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!! 

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. 

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!!

It's so hard

I have been fighting some demons for a while now. I have been trying so hard to stay positive and smile through all the pain, but its getting harder to do. Every time I see something we bought for Amelia or said we wanted to do with Amelia and can't it hurts. My heart is so full of hurt right now that it's hard to put a smile on my face. It is hard to even pretend any more. I am starting to become angry. Angry at myself for what happened, angry at everyone who is flaunting their perfectly healthy babies. Angry at Matt for no reason. I am sick of feeling this way. Sick of feeling the tears streaming down my face all day. Sick of praying for Amelia to over come obstacles that she shouldn't have to face in the first place. 

I am sick of peoples comments "oh, but she's so beautiful" "oh, she's fine" "oh, just pray about it" "oh, be thankful you have a child" I know these comments aren't meant to be hurtful, but they are. Her beauty and her happiness have no bearing on the fact that she has struggled for the past 14 months. The fact that she has had to have 6 brain surgeries, hip surgery and casted, wear a helmet, have extensive therapy, hospital stays, doctor appointments...doesn't make it any easier because she is pretty. She is NOT fine. She has multiple things wrong with her and she struggles daily. If you don't know, don't say anything. I pray, I have prayed for the past 13 years, and non stop for the past 14 months. Yes it is a miracle that she is still here and that she can do some of the stuff she can do, but it doesn't make it easier. It doesn't make life easier to see 9 month olds walking around and your child can barely sit up. It hurts to see that. I am NOT hurt that these children can do it, but that Amelia can't. People like to tell me I am rude because I don't like seeing that. I can't help it that it makes me upset that my daughter may never walk. People always seem to think that it isn't that hard to deal with something like what we are dealing with. I am just glad they don't have to go through it and I would NEVER wish this on anyone. 

The internal fight of having another child is another thing that hurts. Matt would LOVE to have another child, as I would too, but I just don't know if I can emotionally handle it. Or physically to be honest. I think a sibling would help Amelia in a lot of ways. I think she would love having a brother or sister, but is that just the selfish part of me talking. I don't think I would be able to handle all the "normal" stuff that child does. It will hurt that it comes easy to him/her but Amelia struggled to do it if she could do it at all. 

Do you know what is really hard? Having to discipline your child for ripping off her eye patch. Something else to add to the pain I feel. I have to scold her for messing with it. Something that all other mothers take for granted and I have to scold my child and make her upset with me yet again. I know I am doing it for all the right reasons, but it doesn't make it easier. The bad part is that it doesn't seem to even be working. 

Why does life have to be so hard? Why do the tears have to come when thinking of my child? Why are people so rude? I would love to surround myself with family and friends during this hard time, but they aren't anywhere to be found. Well, that's not true. I know I can count on my aunt, cousin, sister and Grandma. They have been there for me since day 1 and I know they will be here for me in a second. But they are so far away. I can't call anyone and say "hey, I need a break, I need to take an hour to myself". There are a couple of people who offered, but these people also don't listen to what we say about watching her head, not giving her certain things, etc. So not only am I stuck at home/at doctors/at therapy alone, I don't have anyone to lean on for support. This is starting to take a toll on my marriage as well. 

I just wish for once that something would go right in my life. Just one thing is all I am asking. Let one thing be easy for Amelia, or let her do something major that we were told she wouldn't do. Let Matt get onto a job where he is making full scale and we aren't wondering how we are going to pay the bills or how we can make it work so I can go back to work so bills will be paid. Even something as small as someone here who said they would be there for us to actually be there for us. I've written everyone off because they aren't worth me worrying about, but it would be nice to have someone to talk to. 

Please pray for me. Pray hard because the devil is trying something fierce to get to me. He is wearing me down. I am still standing strong in my faith, but it is getting harder and harder to do. 

Merry Christmas

For those that personally know me, you know that Christmas is an extremely difficult time for me. Even having Amelia it is still a rough time. There are people who think that they know what will make me like Christmas but they don't know that Christmas will never be a happy time for me. Yes I think that as time goes on and Amelia gets older I may enjoy it more, but being so far from my family will make it so I will not enjoy it much. 

This year all I wanted for Christmas was to be with my family. The people that for the past year have surrounded me with love, kindness, and comfort. The people who called/texted/emailed/facetimed all the time to talk to or check on Amelia. The people who worried as much as I did every time Amelia went to the doctor or for surgery. I wanted to surround myself with them and smile and actually mean it. Money is always an issue with us. When we have a little money we never have time and when we have time we never have the money. Matt was determined to make me smile though and said we will make it work. (Leave it to a man to say that when he's never balanced our checkbook or paid a bill in the last 15 years!!). 

So we packed up and headed north. Prior to Amelia a trip to my sisters would take just over 8 hours. We would eat in the car and just go. With Amelia it was almost 12 hours. Stopping for an hour for lunch, an hour for dinner, stops to change diapers and give meds. We didn't tell anyone we were coming except for my sister. On Christmas Eve (a few hours after we got in) we went and checked into a hotel out by Grandma's and then went to her house to surprise her. My sister took her to my uncles and said her surprise was here (everyone thought she was pregnant). It was so nice to be able to walk in and get greeted with open arms and happiness. 

We had a great time and I got the best Christmas gift I could ever ask for!! 

Happy 1st Birthday

I know this is really late, but I am finally getting the courage to start posting again. I have to build up enough emotional energy to make a post and with so much going on the last few months I couldn't do it. 

I can't believe my little baby girl is 1!! I love seeing how far she has come in this past year. She is the sweetest, happiest, most loving baby I've met. 

Her birthday party was awesome. Well, I guess it was as awesome as you could get with over 20 people saying they will for sure be there and never show up. There are 2 people in particular that really disappointed Matt, but they will never care. I am so, so, SO thankful for my family who traveled from MI, FL and WI to come celebrate with my little bug. 

The theme was pink sock monkey and I think everything came out cute. I did the baking/cooking and Lisa printed all the decorations, so for being amateurs the party turned out cute.