I'm Suchhhh a Lazy Blogger. Haha

Okay, where to begin.....

First off, Carter has been spasm free for..*drum roll pleaseee*...9 MONTHS AND 7 DAYS!!! It's hard to believe he is almost one and a half now! Time has definitely flown by recently. He is in the process of weaning off of the Sabril right now, and so far so good. :) No spasms, no nothing. I'm trying not to count my chickens before they hatch but I'm reallyyyy praying that the spasms are gone for good. We haven't done an EEG recently, so I'm anxious to make sure that the hyps. are gone for good also.

To sum up Carter's accomplishment: He is now walking....EVERYWHERE! (He started walking at the beginning of October) Attempting and sometimes accomplishing putting a ball in a hole. (For other mothers with special needs children, they realize that is A BIG step. :) He has picked up more babbling such as "na,na" Almosttt able to walk up stairs by himself. BOTTLE FREE!! Drinking from a straw cup with occasional leaking. Less oral (another huge step for Carter)

As you can tell, Carter has came a long way! He is meeting with an OT, PT, and soon to be ST. I cannot waitttt to meet his new speech therapist! I can tell that Carter is getting frustrated because he doesn't understand how to say words and I'm hoping that he picks up quickly with the new therapist.

Recently, I don't think I've seen Carter any happier. He has been so bubbly and rambunctious that I can hardly keep up with him. And I truthfully don't mind at all. :) Being almost med free has shown me his true personality. And let me tell ya, he's quite the character. :D

P.S. Thisssss is what happens when I let Jake pick out his outfit. Lol. Never let a man do a woman's job. Haha

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Speaking of Jake.....I just want to add in that he is the most amazing friend, father, and boyfriend that I could EVER dream of. I've gotta admit....I think Carter and I are spoiled. :)

Carter RUNS to him every time he gets home from work, and cries when he has to leave for class. It's sooooooooooooooo adorable.

I wouldn't know what to do without Jake, that's for sure. He's always been there to pick me up with I'm down or overwhelmed and for that I will always be truly grateful.

Anderson, here we come!

Okay, so MANY things have changed since I last blogged....hmmm where to begin.....

Well, first off, CARTER HAS BEEN SPASM FREE FOR FIVE MONTHS AND FOUR DAYS!!!!! It's incredible how different he is with the spasms and hyps gone. So far, things with his health couldn't be any better! The doctors seem very impressed with his progression.....considering his diagnoses.

The cardiologist informed us that his rhabdomyoma have dissolved (small nonmalignant tumors on his heart). Which was also a huge blessing.

Carter is now sitting up along with army crawling!! He can get onto all fours and rock back and forth, but isn't quite crawling yettt. He is also grasping the concept of pulling himself up on things, which is also a big step for him. He drinks from a sippy cup, and can eat almost anything I give him now such as mack and cheese, granola bars, oatmeal, rice, etc.... I'm very lucky he's not a picky eater haha.

AHHHH! My little boy also turned ONEEEE!!!! How darn exciting was thattt?!  I had a blasttt planning his party with Lindell. We stayed up way too late making his snacks though. lol. Oh goodness did he love that cake or whattt?!
                         

We have moved from Indy to Anderson, because Jake and I felt that was a necessary move for our family. I was faced with a difficult decision recently though..... I reallyyyyy hated my job in Indy, but I wasn't sure if we could afford for me to stay home with Carter.....But Jake and I evaluated our financial situation, and I am now able to stay home with Carter and focus on our little family. So far, Jake and I's relationship has grown sooo much, and I feel a lot closer with him, along with my little baby boy. Before I felt as if I didn't get enough time with him...like I was missing out on his progression, but now....I get to see every little accomplishment he is making, and it couldn't make me any happier to be home with him!!!

I know some people may not agree with my decision of staying home with Carter, but I feel that it's best for everyone. Jake, Carter, including myself. These precious times with Carter are only going to happen once, and I realized that if I can be home with him more, I'm going to be there. He is my life, he is what means the most to me, he is my everything. So I want to see that little smile as many times as I can, and watch each and every milestone!

 No matter what....my family will always mean the most to me.

Teeth, Giggles, and Joy

I'm so overfilled with joy and happiness because of Carter's success and progression. 

I just had to tell everyone his testimony. :)

Since Jake, Carter, and I moved to Indianapolis, we have been trying to attend church

as regularly as we can. One of the first churches we attended was named "Church at the Well".

This small store-front church is where a miracle happened. 

Carter was taken off the ACTH, because the neuro felt that it was time for the wean. 

The first day of the wean, the spasms had came back immediately.

We had met with our new neuro in Indy, to discuss our options, and knew that the next route would be Sabril or Vigabatrin.

We started the Sabril on Friday the 12th, and on Sunday the 14th, we took Carter to church. 

He had still been having spasms, like the medicine had no effect on him what-so-ever.

My uncle decided to share Carter's medical battles with the church. 

He took him to the altar, and everyone came up to lay their hands on Carter, as they prayed for healing.

Jake and I felt at that moment that a large weight had been lifted from our shoulders. 

We looked into each others tear filled eyes and realized, that Yes, it would be different for us, from this day on.

Later on that day, Carter had one more spasm....

But now, 2 months and 5 days later...Carter has been spasm free.

You would never guess by looking at Carter that he had these diagnoses.

He smiles, laughs, plays with toys, interacts socially, rolls alllll over, transfers things from one hand to another, scoots himself on his tummy, reaches for and grabs things, but most of all he is HAPPY.

Parents of a healthy child may not look upon some of those things as achievements, but they truly are!

I hope no parents take for granted the little things, that each child is "supposed" to do, because I know parents that would die to see their children simply sit up on their own.

Each and every day with Carter is such a miracle. I can't stop praising God for giving us such a huge blessing that day. 

Now I realize...there is...and always will be...hope...

New Neurologist...New Hopes.

We met our new neuro on Feb. 3rd and so far...so good. :)

He's very understanding and seems genuinely concerned with Carter, which is hard to find in Riley doctors.

He immediately agreed with us on trying Carter on Sabril or Vigabatrin.

Carter started Sabril the next day, and we have seen a decrease in spasms already.

I'm reallyyyy hoping that the spasms will eventually go away all-together.

We called and set him up with First Steps, but unfortunatly they haven't gotten back with us on when he will have the first appointment.

I feel that he is progressing slowly but surely though, he is pulling himself up to the sitting position, but it usually doesn't last long.

He hasn't figured out that he has to put his arms down so that he won't fall over lol.

Updates on my little boy Carter.

Well, it's been a rough road the last couple months. Jake, Carter and I made the big move to Indy where we have our first apartment. We are both attending school, and working, so it's been pretty stressful. But it's also been a blessing to us because we are on our own for the first time, and I feel that although we have faced some rough times, it's only making us stronger.

Carter was diagnosed with TSC...tuberous sclerosis complex in late December. The doctors haven't really told us what to expect about it, but so far it doesn't seem to be very severe.

He is still having the spasms. We are going to see a new neuro tomorrow, so we are hoping to get him on some new meds and see better results. We will be seeing a neuro at Riley, and I have heard great things about that hospital so I'm excited yet nervous. I don't want to get my hopes up too much.

As of right now, Carter is still on the Zonogran, Atenolol, and ACTH shot. The old neuro increased the Zono to 150 mg, but it doesn't seem like it's helping him much. :( He is on the last week of the ween off of the injection. Ever since we started the ween though, his spasms have came back slowly but surely which is very discouraging. I'm thinking the neuro didn't leave him on it long enough because it's supposed to be a 4-6 week process and he was only on it for 3 weeks.

I just keep thinking that "what if.." he would have been on it longer, they could have been gone for good. Unfortunately we have had some horrible miscommunication with the doctors and nurses, because the neuro didn't even know we had started the ween until he saw Carter 3 weeks after it was started. That was a little frustrating.

Now that Carter was diagnosed with TSC, I'm hoping to try him on Sabril, or Vigabatrin because I've heard that's the best med for those diagnoses. Although that med does have some serious side effects.

If we can't try the Sabril, then I'm hoping to try the Ketogenic diet or another round of ACTH injections. I really feel that Carter doesn't have much delay so far, but if the spasms persist I know it won't be good news.

Besides the medical issues, I feel that Carter is a happy and normal baby. He is still laughing and cooing, alond with holding his own bottle for the past couple weeks now. :)

He isn't making much progress on his tummy though. haha He isn't too fond of tummy time. lol

But Jake and I are going to look into the First Steps program just in case he is developmentally behind and we don't know it. Just to be on the safe side.

Today, Jake and I are trying to weigh our options of the next step that WE as parents need to take, because we realized that our aptmt isnt' located in the best area. Our aptmt was broken into on Jan. 26th when Carter and I were sleeping that morning, and they stole some pretty valuable items, but when they came in my room and found me petrified and unable to breath lol...they left...thank goodness.

I'm just really glad they didn't try to hurt Carter and I. The only thing that I'm really mad that they took was my camera, because it had over a thousand pictures of Jake, Carter, and I. Including videos of Car cooing, Jake and I's prom pics, and so on....

They could have the camera, but they should have just taken out the memory card haha. If only criminals were that thoughtful right? lol

So now, we are trying to decide whether to stay at the aptmt and make the management reinforce more security, orrrr break the lease and find a new place to live.....

Yeah, obviously we are in a sticky situation because we are broke college students...with a baby....and want to break a lease....AHHH! haha

We'll figure something out eventually though. :)

In the mean time, Carter is my main concern. I can't wait to go meet the neuro and get some better results.

Well, I will keep everyone posted on how Carter is doing, along with Jake and I. :)

Keep in Touch. Loveeeee,

Kristen