Helmet head

We finally went back to the helmet place. It's been a month since she's been out of the Helmet. The helmet dude (he's not a doctor, not a therapist, so he is the helmet dude) was shocked that the helmet still fit. The only problem was that it pushed her brain up and created a lump at the top of her head. I wasn't comfortable with that and he wanted the entire area there is no bone covered. So she was measured for a new one. So long as there aren't any issues again with insurance she will be in it in 2 weeks. I'm hoping that's the case because the sooner she gets in it the better it will be. Not only will it hopefully aid in shaping the rest of her skull so she can have another surgery, but it will also protect the area with no bone. 

The time she was in her helmet was well worth it. Symetrical her head started off at a 10.5. Normal is under 3. Today she was at a 3.4!! She does have a bulge on the right side of her forehead and that helped a little but the back of her head looks much better. I don't notice these things because I see her 24/7 but helmet dude noticed and the scan confirmed it. I'm glad something finally has gone correct. The length/width ratio has increased, but that was expected because she doesn't have a bone on the right side anymore. 

Amelia really loves her helmet. She got super excited when he put the helmet on her and then got sad when he took it off. That's a blessing because I can't imagine how uncomfortable that is for her and she doesn't mind it. I'm so blessed to have such a happy, go-with-the-flow, compliant girl. She for sure gets that from her daddy. I'm typical type a, everything planned, everything perfect! 

Plastics and NS appointments

Today we met with Amelia's NS and plastic surgeon. Everything looked good. Amelia was scheduled for an MRI in two weeks but her NS likes to have them 3 months post op. That appointment was schedule after her follow-up from her last surgery. So we get to cancel one appointment this month!! (Yes we have to still go in a few months but that's okay). He is also referring her to a rehabilitation doctor. She will monitor Amelia's cerebral palsy and her developmental growth. She will give a plan for PT and OT and help with everything. Yes it stinks to have yet another doctor added to the mix but I think she will really benefit (not just Amelia, but myself too). 

The appointment with her plastic surgeon was uneventful. Still the same plan. Get back in the helmet (we go next Wednesday) and let her grow some before the next surgery. See ya in 6 weeks. 

Tomorrow we have therapy and then on Friday Auntie Earmuffs and Uncle BDB will be here! Even though it's a super short visit I'm excited. I don't get to see and talk to adults with the exception of doctors and therapists. Any time I can have adult conversation is welcome! Plus I miss my family. 

Guilt, heartache and pain

I'm not an open person. I hold my emotions in and try to keep a smile on my face. So sharing this isn't easy for me. For years and years I've seen people having babies. It hurt so bad to know that I would never have a child of my own. Yes we tried adoption, but that's just not the same. I wouldn't feel my child kicking in my belly, I wouldn't experience all the emotions of pregnancy, I wouldn't give birth to my child. I was happy for all my friends and family that had children, but it killed me. Honestly, it still hurts some. Even though we miraculously got pregnant, it took 12 years and tons of heartache and pain to get there. 

Every time I look at Amelia I hurt. I feel so guilty for what happened. It was my job to protect her and keep her safe and healthy and I failed. You can tell me till you are blue in the face that it wasn't my fault, but it will not erase the guilt and pain I feel. I used to sit in her room while pregnant and wonder what she would be like. I would smile thinking about how I would see so many firsts in that room. Her rolling over for the first time, crawling, sitting, her first steps. Now I can't be in there without some sort of distraction without breaking down. Putting her to bed is the worse. Sitting in there, holding her, I just feel so horrible for everything she has been through and everything that she will go through. Watching her struggle with things that should be easy hurts. Thinking about things she may never be able to do kills me. She gets so frustrated not being able to be mobile and it's hard to watch. 

One thing that makes me feel even worse is the pain in Matt. Seeing other babies do things that we don't even know if Amelia will do hurts. What makes me hurt more than ever is the pain in Matt as he says "did you see x doing y? It sucks doesn't it?" I feel like not only did I let Amelia down, but I've let Matt down too. 

 It's also hurtful when people tell us that Amelia is fine or she will do x, y and z. Yes besides her head, she looks "normal" but most of her issues are neurological. Her brain does not tell her body what to do, so she's not even close to crawling. She has cerebral palsy so she is weak on the left side and unable to do things. Despite working with her for a few hours a day and taking her for therapy a few times a week she is still way behind and may never get to where she should be. I have to deal with the heartache of watching her try so hard for something she just can't do. 

 Every step she moves forward she has another surgery that sets her back two steps. She's starting to make gains with her torticollis and then she had a blocked catheter that made her head bigger and weighed it down. She's starting to show some strength in her spine and in a month she will be in a spica cast so most likely after the 3-4 months she will lose the strength in it. 

 Maybe I'm still hormonal. Maybe it's all the stress in our life. Maybe I'm just weak. I try to keep myself busy (in the rare times we are home and Amelia is sleeping) so I don't think too much. I can't stand feeling like this. I can't stand the tears and pain. I will say that seeing this precious little girl smile and hearing her laugh melts my heart. Knowing that all the hurt I have for her she isn't carrying. I love this little angel so much.

A sad day :(

Tomorrow is the first day of the new school year. Even though it has been easier as time goes to accept the fact that I had to give up something I honestly love, it still hurts. The other day I went to Kroger and I saw all the cars in the parking lot and I'll admit I shed a few tears. It's hurtful that I was forced to give up something I love. If it were any other job (honestly I think if it were any other school) it wouldn't have been hard. I didn't just work at any old school. I worked with a family. Not having family here is hard and these wonderful woman (and man) took me I and under their wing. I honestly don't think I can say I ever had a bad day at work while I was there. I not only miss the people, but I miss the kiddos too. It's amazing watching these little munchkins grow so much. They steal my heart and I love watching them grow older and move on. I will admit not hearing "Miss Kelly" a million times a day is nice, but I do miss that too. I will say that having Busia, Uncle Larry and Aunt Connie coming to visit Amelia (let's face it, no one comes to see me...right GAV?!?!?) makes it easier to forget about tomorrow. I'm excited to see them all!!

A girl and her monkey!

Isn't she just adorable?!! I have had a few people ask about the obsession with sock monkeys. Well here's the story:

So the Saturday after she was born I was released and went to see her. After about 30 mins we were asked to leave as they were going to try to put in an art line. So Matt and I went to get something to eat and went to the gift shop. Everything we had for her was at home. We wanted her to have something. Well the cutest thing they had was a pink little sock monkey. Walking down the hall I had the monkey. I was walking slow as that's all I could do (just had a c-section 1.5 days before) Matt kept looking at the monkey, then me, the monkey, then me. I finally said "if you want to give it to her go ahead" He basically grabbed the monkey out of my hand and ran to her room lol. 

That Thursday was thanksgiving and Lisa was in. We had planned (before all the horror happened) to go to Cracker Barrel for dinner, so we went. While there Lisa wanted to but Amelia something. Matt found a striped sock monkey that was so cute. Well being the ever so obvious person he put it somewhere that he thought Lisa might see it (instead of saying, here, this is cute, buy this). Lisa bought a Minnie Mouse. Well the next morning Matt was still thinking about that monkey so we had to go back to get it. That's how it all started. 

Every surgery or hospital stay results in a new monk. Now we didn't want monks to mean bad things so she has also got a few "fun" ones. Auntie Earmuffs bought her the giant stripes and U of M monk. She also has a monk lovey and some holiday ones. She really loves her monks, especially the stripes. 

Regression (and teeth)

One thing that really stinks about having surgery is the regression. Watching Amelia grow in areas is amazing and then watching her fall back is devastating. Sometimes the regression is huge (like her big surgery in May) and sometimes it's just a few little things. Even though this past surgery had a few setbacks, those set backs are huge in the scheme of things. When she is already so far behind little setbacks just make it worse. At her therapy evaluation a month and a half ago she was developed consistent to a 1 month old. So when she makes progress it's great. It's not so great when that progress goes out the window. I know regression doesn't go with teeth, but I thought I'd kill two birds with one stone. Amelia went from 2 teeth to 6 with a few more coming down quickly. I guess if she has one thing going for her it is growing normally. Her speech and appetite are good. She loves eating out food and we love sharing with her. It was embarrassing when we were in the hospital and she was on my lap while I ate. She threw a fit because I wasn't putting the food in her mouth too. So just a couple hours after brain surgery she was eating my chicken. Love that girl!

Yes, I am fat

That was awful nice of you to notice that I have put some weight on. It was even more awesome to hear you talking about it behind my back. I guess the tears falling from my face as I look at myself in a mirror or the fact that my clothes are tight and I am completely and utterly disgusted by myself wasn't enough. 

I guess when you are on the outside looking in it is easy to cast judgement on me. "Oh, she doesn't work, why can't she workout" or "She needs to go on a diet, she's nasty" Thank you. I didn't realize that your life was completely perfect that you need to judge me. 

Yes, I should go on a diet, but have you ever left the house at 9 am and come home at 4 pm because you were running to appointments with your daughter who has a multitude of medical conditions? I'm lucky sometimes if I even eat, so the last thing I am worried about is finding time to actually sit and eat a salad. Have you ever had an infant at home who just had brain surgery (and right now is teething)? Have a child who is in pain when it rains or storms, which we've had a lot of lately? That child does not want to be put down. She wants the comfort of her mother. Again, getting to eat is a luxury those days, and I try to find the quickest thing I can. So, yes I should diet and eat better, but until you've spent a week in my shoes, running to and from appointments, trying to deal with everything you've been thrown, please don't judge. 

Yes, I should exercise. Read the above paragraph and tell me when I can do that. The treadmill wakes her up, so when she is napping or sleeping at night isn't an option. I barely get any sleep as it is and I am not trying to go and over do it because society says I am fat and I need to. I need to make sure that I am doing what I can to take care of my baby. If that doesn't please you, sorry. 

I shouldn't even have to justify myself. I shouldn't have to feel even more like crap than I already to do because people like to judge others. Walk a week in my shoes. Just 1 week. Appointments every day (most days there are more than 1). After watching your child have 5 brain surgeries you don't want to see her cry, even for just a few minutes. You see how that makes her heart rate rise and how it causes pressure in her head and the last thing you want to do it see her cry. 

If you are so disgusted by me, please feel free to exit my life. I have enough to worry about without having to worry about people talking negatively behind my back. If my husband doesn't have an issues with me and loves me for who I am, than I am happy.