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. 

Another successful surgery!!!

Surgery was a success! Praise The Lord! He was able to go through the same incision as before to replace the valve. He was able to find a smaller programmable one. It is still larger than the previous one, but it means no furture surgeries to change the setting. He also had to change the catheter again. Normally with hydrocephalus when fluid starts to build up the ventricles are enlarged. With her she has an area (where the bone has been absorbed) to decompress and so her ventricles remain small. So he added extra tubing this time and hopefully that will help with her small ventricles. Everything was still working, just not as effectively as it should have been. 

He did have to make an additional incision under and toward the ear. This was so he could attach the valve to the rest of the tubing. Everything else looks good. 

We should be able to go see her in just a few minutes. As long as she can hold down food and Tylenol can help her pain we will be able to go home tomorrow! 

I'm waiting to hear from her plastic surgeon to see what restrictions she will have since she will not be allowed to wear her helmet for a few weeks. I'm really hoping she doesn't have to sleep back in her car seat. That's not fun for any of us. 

Thanks so much for all the prayers and thoughts. 

Surgery Day

We are here and waiting. I tell ya what, this waiting room is great people watching. Sometimes that's not a good thing, but sometimes it's a great distraction (and not just for Amelia either!). 

It doesn't seem like we've been here an hour, but we have been. We have been taken back to the holding room. She has been checked out and the nurse practitioner (who Amelia loves and she loves Amelia) has been in. In about an hour she will be taken back. The surgery shouldn't take long. He will open her up, test the parts of her shunt and then put in the new valve. As long as everything goes well she should be on her way home tomorrow! That is such a blessing to be able to recover at home. 

Amelia is sitting with daddy (as usual - she doesn't like mommy much, especially when daddy is around). For a child who hasn't had anything to eat in a long, long time, and didn't sleep well she is having a ball.  I love her spirit. I love her ability to laugh and smile all the time. Granted she doesn't understand that her head will be cut open in an hour, but still, she's so happy.  

We are praying hard for healing and comfort for Amelia and for guidance for her doctor. Once she is out of surgery and we can see her I will update. 

How do you prepare?

How do you prepare for surgery? How do you put aside those fears that this may be the last time you tuck your baby in? I'm so thankful that today is Sunday and that I was encouraged and blessed at church today. Knowing that when the trumpets sound I will be with a child that has a perfect body. No more scars and pain. Thats comfort right there. 

It's hard packing a bag knowing that you and your baby will be miserable until you get home. Just when she falls asleep someone comes in to check her or give her meds, waking her up. It's rough, but I know this is what has to be done and it will make her feel better in the long run. 

I managed to do some cleaning (I like to clean and organize when I'm sad or mad). I want to do more but know I need to try to get some rest. Matt is cuddling with a happy little girl. She's up WAY past her bedtime and knows this. The more she does cute things the more daddy eats it up and let's her stay up. I'm not arguing. How can you sleep train a child who is in the hospital every month? Maybe after her 1st birthday we can work on it. Maybe not. At this point, I honestly don't care about that. If I get a few more minutes with my girl then so be it. I can function on little sleep. 

I don't know if it is because this is now life for me or if I just haven't given myself enough down time, but the reality of this surgery hasn't hit yet. It will be like last time, when they took her away is when it hits hard. You are entrusting the life of your child in someone else's hands. Her neurosurgeon has proven himself 3 other times already, so I trust him, but it's not easy. Thankfully this will be a short surgery so by the time anxiety and worry start to hit she should be finished. 

If y'all have had the pleasure of talking to me lately you may notice more attempts at humor. That's my way of coping. I tend to laugh at the most inappropriate times. When I am stressed or nervous I find comfort in humor. One of my favorite movies is What About Bob? I think that movie is so funny and Matt knows something's up when I'm watching it. Things like that get me through times like this. 

If you are reading this could you please say a prayer tonight/this morning. Pray for healing for sweet Amelia. Pray for guidance for Dr Naftel and his team. Pray for comfort for Matt and I. 

Much love,
💜💜💜