What a blessing!

This was a post on facebook today: "meeting with a mom here in Bellevue for the 1st time whose infant has the same diagnosis as our Will. there's something about meeting another parent whose child has the same disablity as your own- an instant bond of understanding and frienship develops right away."

I'm so thankful to have met her! Thanks for sharing your time, wisdom, and strength. I look forward to many more meetings.

Jayen has been seizure free for 12 days! I wasn't posting this information for a while as I was kind of superstitious. I hope this doesn't make him have another. I did knock on wood! Everyday is a step closer to surviving this crazy diagnosis. I am so thankful for all the support we have received. Jayen will start early intervention next week. I'll let you know how it goes.

6 month check-up

My little chunky monkey is apparently not so chunky. At his 6 month check-up today he weighed 15 lbs. 14 oz which is only the 17 percentile. His is 27 inches long 65% and his head is 43 cm 25%. He is apparently very tall and skinny. That is not the same baby I see!
There was some concern about his development though. According to the Denver Prescreening Developmental Questionnaire II, Jayen is functioning at a 4 month old level. I didn't realize that is where he is. Kind of hard to swallow that one, one third of his life just gone. We will continue to work with him and we continue to pray everyday.

He qualifies

The Early Childhood program at Bellevue Public Schools just left my house. Would have never thought I would be doing an MDT in my living room. It just feels so weird to be on the other side.
Jayen will qualify for special education services as other health impaired. Someone will come to the house about every other week and monitor progress and teach us how to work with him. We hope that through all of our efforts Jayen will soon be meeting his developmental milestones.

Refill RX

I just signed for another $48,632.34 of medicine. In all Jayen's ACTH cost $145,877.03! That is rediculous. CuraScript just bought a new wing from my insurance.
At least it is working.

What? You're kidding, right?

I was really worried about the appointment today. Jayen was having seizures again and they were beginning to have fewer days between them too. Jayen has to be tired and ready to sleep when we do the EEGs. He was very crabby and ready to eat and sleep. It took a little bit but finally he fell asleep. From what I saw on the computer it looked worse than ever. I swore this wasn't going to be good. After the EEG we had an appointment with the neurologist. He came in the room and said well the EEG looks "fine". What? I asked "What do you mean fine?" He said he would read it as NORMAL!!!!!!!!!
How could that be? What is going on? I love this little ray of sunshine, but really? Are you sure? Oh my gosh, can I throw a party for this one. This was the best news I have heard in a really long time. We will start weening him off of the ACTH right away. It takes about 5 weeks to come down from the meds. If he stays seizure free we will look at taking off the phenobarbital. And if he still stays seizure free we will take him off the Topamax. This process of weening all the meds would take at least 6 months. On the other hand, if he continues to have seizures we will increase the Topamax until we can control the seizures.
We know that we are not totally out of the woods and actually have a long journey still ahead of us. We are so thankful for all the prayers and well wishes we have received from everyone. We know that we could not have gotten through this without all of you.

This little piggy went to market, this little piggy came to MY HOME!

I just can't believe how big he has gotten. What a little chunk. We are nervous for the appointments tomorrow. Will update when we get home.

10 days seizure free, 7 days, 3 days

After receiving his first shot Jayen had one seizure the same day and one the day after. The medicine was not fully in his system so it was to be expected. From Saturday the 24th through Monday the 3rd he was seizure free. 10 days, that was so great. On the 4th he had a seizure so we increased his ACTH. This dose seemed to be working. At least for 7 more days. On the 11th he had another. The next day we saw the neurologist. He increased the ACTH again and started another med called Topamax. The ACTH seems to be working ok on the seizures. We have definitely seen a drastic decrease in seizures, but the flip side is not the greatest. Jayen is continuously uncomfortable. He is hungry 24/7. He is up every hour at night. HE IS A MONSTER!
We are still waiting to see if the Topamax helps at all, but after having another seizure on the 14th I am not very optimistic about a lot of things. My heart is breaking every time he makes a little twitch or any little movement. I'm so worried that since the seizures are occurring again that our chances of growing out of this are decreasing daily.

EEG looked better but still having some seizure activity. Going up on steroid and adding another med (Topamax). This is crazy!

Everytime we go to the hospital Dalan throws money in the water fall and makes a wish for his brother. "Make Jayen all better!" he says, then throws the coin as hard as he can. He is such a good protector. I don't think he understands everything that is going on, but he tries his best to make Jayen feel better.

One week seizure free! THANK YOU, THANK YOU, THANK YOU!

Anyone got any good ideas of how to explain to a two year old that you have to hurt his brother in order to make him better? What a good big brother he is!

I was just handed a parental rights in special education booklet. Oh my how it feels to be on the other side :(

Insurance was billed $97,262.69 for our newest med. That is without any refills yet too. Hope this works. Got home from hospital Saturday afternoon. Been seizure free since. Jayen is in good spirits. He is going to be confined to the house for a while. Not taking any chances with the immune system.

I just gave my baby his first injection. He cried for 2 seconds, I cried for 2 minutes. This is going to be hell. Found out the meds cost $38,000 a vial. HOLY $#!+

Finally a name

Throughout all of the increase in medicines and the changing of the seizures we were still doing test after test. We have gotten to know the EEG technicians very well! We had the EEG at 9:45am, the doctor called at 1:30pm with some devastating news. The EEG showed hypsarrythmias. He was able to classify his seizures under a condition called Infantile Spasms. As stated numerous times in almost ever description of the disease, this is a "catastrophic form of epilepsy." Most of the outlooks I could research were not good outcomes. I was so devastated. I tried to call Matt at work. Again I would have to get him out of this last thing he had to do before securing this great job. I felt like I was doing it on purpose. I had no way of controlling it but I just felt like it was my fault.
We were told to get ourselves to the hospital as soon as possible. I packed our bags. We were going to be staying for at least three days. Dalan went with us to the hospital until Grandma Kuchta could get there. He got to go play at papa's house again and wasn't too upset about leaving. He gave his brother lots of kisses and told him to get better.
On April 22nd, we started our first hope in getting rid of this horrible disease. ACTH was our best hope. No one knew how it worked or what it exactly did. All they knew was that it worked in quite a few cases and it was VERY expensive. I can't stress very enough. ($38,000 a vial. We were sent 4 vials to begin with. Our first bill was over $97,000 thanks God for great insurance) Jayen had to get IM shots in his thigh daily. What a horrible experience having to give your five month old baby a shot in his little leg daily.
With the shots comes a lot of doctors visits. We are visiting our pediatrician on base twice a week for blood pressure checks, we see the neurologist at Children's Hospital once a week, EEG once a week, blood work once a week, and soon we will start working with the Early Development Network to try to regain some of the skills he has lost. This is one crazy journey!

What is this?

The day after getting out of the hospital we started noticing these "funny movements". After getting them on video and showing the doctors, the finally agreed that they were seizures. Jayen started having four to five episodes a day. We were constantly increasing his phenobarbital. He was so drugged up. It didn't even seem like his was the same little baby. We were worried mostly because it seemed he had regressed on some of the milestones he was meeting before. We told the nurse when we left the hospital that it seemed like he wasn't able to hold his head up as well as before. After two increases in the phenobarbital we added another medicine. Keppra was started on the first of April. The two medicines together seemed to help a little. By this point he was having two to three episodes a day. And on the 14th he was seizure free! But this wasn't a good turning point. The very next day his seizures starting occurring in clusters. He would start a seizure, come out of it, then immediately go into another one. This would occur five to ten times in one episode. This also prompted another increase in the pheno and the Keppra. The 16th was also a seizure free day, mainly because he was so drugged up that he couldn't even wake himself up. The medicines make him very sleepy.

The beginning of "the end"

On March 22nd, 2010 Jayen and I were laying on the couch watching TV while brother Dalan was taking a nap. It is OUR time. Jayen's left arm suddenly started hitting me. I was in shock. I wasn't sure exactly what just happened. In my mind I kept asking myself, "Was that just a seizure?" No way. I've seen a seizure before, that didn't look like a seizure. I kept going back and forth in my mind about whether or not I should talk to someone about this. I finally called a friend and asked her to watch Dalan so I could take Jayen to the hospital. So glad I did. Jayen had two more seizures while in the ER. We were admitted to the hospital and started test after test after test. Oh my this was the scariest day of my life. Daddy wasn't sure if he would be able to come home or not so mommy was alone on this one.
We stayed in the hospital from the 22-25. He was put on phenobarbital and seemed to be seizure free. Two days later we noticed a funny movement he was making. Again I started second guessing myself. I talked to the doctors and tried explaining what he was doing. I was told a few times that he was just getting startled. It was a normal thing for a child his age to be doing. I knew they were wrong. I sat down with him one day with the video camera on. I was trying to get a video to send to the doctor. In the first few seconds of taping the dog barked and scared Jayen. You could see his reaction when he was startled. Not more than a minute later he had one of those "funny movements". I GOT IT! I GOT IT! I GOT IT! I was so excited. I finally had proof of what was happening. I sent that video to almost everyone. I wanted people to know that I wasn't crazy. Something was really wrong with my baby. This was the beginning of the end.
I say that not in a bad way. I recently read when a nurse was training in the hospital she was trained that when a family is given a catastrophic diagnosis like this, that the parents have to go through a grieving process. They have to grieve the end of a perfect child. All the dreams and hopes that they had are now obscured with the possibility of things that are far worse. Not that the child can't be perfect, but the hopes and dreams of before are now shared with the what ifs and will he ever.