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!