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. 

One more sleep!

I can't tell you how excited I am for tomorrow! I am more excited about tomorrow than I am Friday. Tomorrow Amelia FINALLY gets her cast off!! Woot woot. I don't know what I'm more excited for, quicker/easier diaper changes, no more stinky cast (she had the stomach bug, teething and runs from meds all after getting this cast), actual baths or the fact that I can see if she will be mobile or not. I will probably get to the doctors office an hour early because I'm so excited!

It has been a long few months but she has been a champ. She hasn't been bothered by the cast (besides getting upset that she can't sit up or crawl on occasion). She has been crawling in a circle, so she still get to various toys. She also tried to get her left foot today lol it was so cute! 

I know she is going to be excited about not having it and more excited about taking a bath! Once she can get to sitting up on her own she will really love bath time. 

What a week

Tuesday of this week started with Amelia's second hip surgery and recast. We got to the hospital bright and early and were home before lunch. Everything went really well. Her hip is exactly how it should be and her cast will be coming off Nov 20!!! 

Wednesday night I noticed a new discharge on the incision site is Amelia's shunt. Thursday morning I called the NS office and they sent us to the ER. A shunt series (x-Rays) and CT scan were needed. Despite throwing a fit we got the shunt series. The CT is another story. After 3 tries (one normal, one after feeding and one when she was sleeping) and her screaming we decided to sedate her. Well apparently the IV wasn't placed correctly because the medication didn't work right away. After 2 doses and lots of tears we finally got the scan and headed to our room. Amelia was having emergency brain surgery in the morning. 

When we got in the room she had a shunt tap done. This is where a needle is stuck in her head to draw CSF to make sure it's not infected. This little girl spazzed during a CT but was talking and calm during the tap. Those drugs finally kicked in. 

With the leaking it was just a matter of time before the shunt and brain became infected. So Dr Naftel wanted to remove the shunt on the left and get it put in on the right. 

Thankfully there was no infection in the CSF. To be sure another sample was taken during the surgery and sent to be tested. The shunt on the left was removed and another one placed on the right. Dr Naftel was completely happy with the outcome. He said it made a huge different and don't be surprised if her head was sunken in eventually. By the time we got to see her head was already sunken in. What a difference putting the shunt on the right side made. 

We had some issues with her staying awake and eating and I was not sure if she was just getting used to the new pressure or if maybe there was over draining. When the NS team came through they felt confident that it was okay and she's come around. An hour later we had dinner and that's all it took. Little princess perked up and ate like a champ. I guess a bottle wasn't going to do for her. 

If all continues well through the night she will get to go home tomorrow. I feel so bad because my little baby is bald but she will have hair yet again. What sucks is that I have to now see all her scars, I can clearly see the bone and where it ends and I'm reminded of all she's been through. But this too will pass. 

Always something :(

I don't know why I expect anything to be uneventful and to go our way. I always end in disappointment and hurt. 

Last week monday I called the neurosurgeons office because Amelia's eyes weren't sitting right with me. He right eye was crossing more, her head was getting larger. I called and of course because she doesn't throw up I was ignored. Finally got a call Wednesday to come in tomorrow for a mri and see her NS. Well in my world that meant Thursday. 3 times in the voicemail she says tomorrow. Well after she called me a liar when I showed up Thursday, I find out her tomorrow was next Tuesday. 

So this morning after the daunting task of washing her head I notice a huge "goober" (what her NS called it lol). Of course it looks infected and all I'm thinking is admission to the hospital, surgery to remove shunt and external drain. We went to therapy as normal and then to the mri (which she moved too much to get a good read). Then up to the NS office. 

He wanted to removed the goober. If he saw shunt immediate surgery was needed. If he didn't see shunt then we would do wound care at home. Thank the good Lord that shunt was not seen. The cause could only be speculated as pressure from the helmet. 

The mri showed the left side as great. The right side, not so much. It's not bad enough to have surgery now but he wants to move the shunt from the top left to the bottom right. The shunt needs to be on the right because that's the side that needs the help removed excess CSF. The reason it wasn't place there before is because of the no bone issue, which we have again. So I don't know if this means a temporary plate will be put in since she will be having a new shunt or what. 

I don't know if it's nerves or what but I'm a wreck. I don't like feeling this way. I hate the roller coasters of emotion. I'm so thankful that she is home with me now. I hate that for a few weeks she won't be in a helmet and have anything protecting her head. I hate more than anything that she has to go through all this. She had a rough day today but for the most part she had her cute smile. That and she was all about leaning in and giving me kisses, telling me it's all good.