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

 

baby carter.

Carter came home from the hospital on July 27th.

He was in the hospital for almost a month and so far he had about 3 diagnoses.

He had rhabdomyoma which is a small tumor on his heart.

The tumor shouldn't cause any problems as long as it didn't get any bigger or constrict the way his heart contracts.

Also, he was diagnosed with SVT, which is basically a fast heart rate.

So, he was sent home on an apnea monitor to make sure his breathing and heart rates were regular.

He would be on medicine for the SVT called atenolol, which would be used to slow his heart rate down.

We met with the surgeon, and he healed perfectly from the diaphragmatic hernia, and everything looked great.

We also met with the cardiologist and he said that the rhabdomyoma looks fine.... so Carter seemed like a perfectly normal baby.

He was cooing like crazyyy :)

playing with his toys.

tracking jake and i around the house.

hitting every milestone that a normal baby would....

He went for his 2, 3, and 4 month well baby visits and his weight, height, and everything else was said to be great...

On Nov 10th, Carter had his 4 month shots, and that's when Carter started acting different.

He would have crying spells, like he was in pain, and we tried everything to get him to stop.

We changed him, fed him, burped him, tried to put him to sleep, walked with him, left him alone, etc...

Nothing was working....and he had never acted this way.

Jake (my boyfriend) and I thought that it was just because of the shots.

So we took Carter to the pediatrician and she said he had a double ear infection.

She put him on amoxicillin, hoping that would make the ear infection go away....

But then we noticed him doing this thing where he would straighten his arms, dip his chin, and his eyes would get really teary, like he wanted to cry.

At first, Jake and I didn't know what to think of it, and we just hoped that eventually it would go away.

Well it didn't...it kept happening.

My mom had been telling me that it looked like seizures but I didn't want to believe that or even consider that.

Eventually I came to my senses and realized that I needed to do something about this...and soon!

Jake and I were looking stuff up on the internet over infant seizures and we found multiple videos of other babies doing the exact same thing that carter did....infantile spasms.

Infantile spasms is a specific type of seizure associated with epiplepsy and TSC...tuberous sclerosis complex.

On Sunday Nov. 21st, we took him to the ER immediately because I didn't know what else to do.

The ER dctr tried to tell Jake and I that it was just his startle reflexes but I knew he was wrong.

We told him what we found on the internet, and told him to go look it up...and he immediately started doing blood work and set up and aptmt with the neurologist the next morning.

So on Monday we met with the neurologist and he asked us what Carter has been doing and many other questions.

He ordered an EEG, which basically monitored his brain patterns and the way his brain communicates.

The EEG tech told us that everything looked normal, but then the neurologist told us that Yes, Carter does have infantile spasms.

He told us that he thinks it's been happening for a couple weeks, but because he had the ear infection that the spasms were made more noticeable to us. He told us that since he was on antibiotics for the ear infections that the spasms might become less noticeable so we will have to keep a close eye on him.

The neurologist commended us on bringing Carter in right away, because most parents don't notice the spasms for months or even years. And by then the child has suffered major mental retardation.

Also, he noted that Carter has a very good chance of growing out of them since we noticed them so early.

Dr. A.... ordered an MRI for tuesday...and we wouldn't get the results back for about a week. The MRI would say whether there is something wrong with his brain that might be causing the spasms.

Jake, Carter, and I got to leave the hospital on Tuesday....

Carter was sent home on medicine that would hopefully control the spasms.

It was called Zonogram or Zonisamide. He would be on 2-25 mg capsules a day.

The neurologist also informed us that he would be putting Carter on another medicine called ACTH. They're shots...that Jake and I would have to give him every day for about 4 weeks.

Jake and I started recording all of his spasms.

He was still having them regularly. But the Friday and Saturday after Thanksgiving he didn't have any.

Then on Sunday...he had 4 clusters of spasms. So I guess it just kind of varies from day to day how Carter does.

Also, on Saturday Nov 27th the ACTH was delivered to our house along with the needles, syringes, and sharps box.

We were basically freaking out cuz we never thought that we would have to give Carter shots, let alone a ton of medicine too.

We had a follow up with the neurologist on Dec. 2 and he let us know that the MRI came back normal so that was a big relief.

We also scheduled a day where Carter would be starting the ACTH shots, and Jake and I would be learning how to give them.

That unfortunate day would be Monday Dec. 6th.

Carter would be admitted at Lutheran and Jake and I would have to stay with him until we felt comfortable going home and giving him the shots ourselves.

The neurologist met with us and decided that he wanted to run some tests on Carter to see if he had TSC...tuberous sclerosis complex, because that is one of the main causes of the spasms.

We ended up coming home on Wednesday Dec 8th.

The neurologist told us that it'll take about a week or more to actually see results from the medicine so be patient....

As of today Dec 9th, Carter is still having mild spasms, but they aren't as strong and persistant as before.

We still haven't found out the test results for TSC.

The only thing we are worried about is the fact that since he started on the shots, he has had crying spells 2 nights in a row right before he goes to bed.

It's not just a little cry either....it's like screaming as loud as possible! And Jake and I aren't sure what's wrong with him, because just like before we try everything...and nothing helps.

Last night he cried as hard as he could for almost an hour, and eventually he got so exhausted and his voice about gave out so he finally fell asleep.

My thoughts and feelings on the issue have been all over the place.

I keep asking WHY? because all of this just doesn't make sense sometimes.

Everyone thinks their children will be perfect and grow up and have lots of friends, and go to college, and get married...and all that.....but you never think things like this can happen to you.

It's scary to think....your children may not get to experience anyy of that.

And i'll admit it, I never thought this would happen to me.

But I've learned that all of this will only make Jake and I stronger in the end.

All we can do is be optimistic and think positively...if not...your thoughts will eat you alive.

Jake and I have changed so much lately, we've been praying and keeping our heads held high and hoping for the best for our little family.

I've realized that crying does help. This is one of the biggest challenges I'll ever have to face.... and that seems to be one of the only ways to cope.

Now, we are just waiting anxiously for the miracle drug to kick in.

We want Carter to live a normal, happy life just like any other little boy.

Please, put Carter on your prayer lists and help Jake and I face one of the biggest battles of our lives.

No matter what happens though, Carter is the best thing that has ever happened to me, and he is perfect just the way he is. :)

My little baby Carter.

i posted this on facebook while carter was still in the hospital.... just to get things crystallll clear. (we all know it's not too reliable to hear things through the grape-vine) haha.... i had carter david pegg on june 30th at 11:39am at dupont hospital in ft wayne by c-section. ...the reason i had him 6 wks early was because an ultrasound showed some fluid around his heart called a paracardial effusion. he was born 6 lb. and 18 in. he was having some breathing problems when he was born so they had to give him a ventilator to help him breathe...which he will eventually not have to be on once his lungs mature properly. and they immediately checked out his heart. the fluid wasn't as bad as they had anticipated so they didn't have to remove any fluid or do any surgeries...yet. they continued to run tests on him to make sure all of his organs were functioning properly. they found a mass in the left ventricle of his heart and they thoughttt it would be a problem but it turns out that it's not a cancerous or malignant mass so as long as it doesn't get bigger or cause any problems with the functioning of his heart...then we have nothing to worry about :) they did some x-rays that showed that his liver and some of his intestines were pushed up above his diaphram whereas they are supposed to be below. they ran some more tests and ended up finding out that he had a diaphramic hernia...(a hole in his diaphram) that's how his liver and intestines got there. so they scheduled for him to have surgery because having those organs in the upper cavity could affect the way that his lungs and heart contract and work. they also found out that his appendix was located on the opposite side it was supposed to be on..so they decided when he had surgery on the hernia...he would also have his appendix removed to avoid future complications. so he had surgery on friday july 2nd around 3pm... where they pulled the liver and intestines down through the hernia into their correct places and stitched up the hernia. they also removed the appendix so that they didn't have to worry about appendicitis or other issues such as his bowel getting twisted and so on... the surgery lasted about 2 hours and it was a greatttt success!! :) we talked to his doctor and everything went perfectly and he's on the road to recovery :D the ventilator that was being used to help him breathe has been reduced greatly and he is breathing basically on his own now :) so he should only have it a couple more days. right now....we are just waiting for him to recover from the surgery so we can hold him for the first time :) oh and btw...i'm fine. the c-section went just as planned...i'm still a little sore but thats about it. :) thank you everyone for your prayers and support through everything...jake and i have really appreciated it. we feel loved ♥ :D -------------**----------------**------------------**-------------------**--------------- good news people :) carter is off the ventilator for good and breathing on his own. jake and i got to hold him for the first time a couple days ago. that was amazinggggg! haha he started feedings the other day and we got to bottle-feed him for the first time :) everything has been going veryyyy well. hopefully get to take him home soon. -----------**--------------**------------------**-------------**--------------**-------- just an updateee. carter is doing veryyyy well! the only thing that we're waiting on is for his feedings to go up. they also have to watch and make sure he is digesting the food okay before we get to take him home. but we're thinking he should be home in a decent time :)