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. 

Bye bye rib graft

It makes me so sad to announce that the ribs in Amelia's head are officially being absorbed. I knew this, just didn't have official confirmation from the plastic surgeon. 

Matt and I discussed what we would do next and we decided not to do any more grafts. We are going to do an artificial plate. We need to wait till she is at least 2 to do it. Once older than 2 the skull is 75-80% finished growing. We don't want multiple surgeries so we will wait. I just hope Dr Kelly doesn't retire before then. I actually said "you're old, hope you don't retire by then!" I was so embarrassed that my thoughts came out my mouth. He laughed and said at least I said it. Most just think it! 

This means that Amelia will have to be in her helmet till then (and possibly awhile after the surgery). It really stinks. She won't be able to be a kid. No playing outside, no swimming. Surgery will be when she will really feel the pain after and she won't be able to do anything for a few weeks after surgery. My heart breaks for this little girl. 

It would take a miracle for her bones to stop being absorbed and for them to start growing. I know God has already blessed us with multiple miracles with her but I don't see this happening. I still will hold onto faith, but need to brace myself for the furture. This affects all of us in many ways. I won't be going back to work anytime soon. We talked about possibly trying to have another child but I don't want to be pregnant or with a newborn/infant while Amelia has this surgery/hospital stay/recovery. Waiting at least 2 years isn't something we want to do as we are both getting up there in age and we would like the children to be close in age. But, as always, we will turn to God and follow his lead.