short update

I have not posted in a while. Things are still pretty much the same. Jordan has daily seizures, some which last a few minutes and some which need medicine to stop them. Yesterday he had some pretty big episodes and needed an extra dose of medicine but he did well after that. His teachers came by to work with him & he was more alert & responsive. He has his good days & bad days.

Our elevator is in and working, just have a few misc. things to tie up with that. Mike finished the roof this past weekend, it looks nice & my friends husband helped a lot with that job. Now since most of the major construction is done I hope we can get our driveway in soon.

We have a new counter top & sliding door in the garage that needs installing & those are big jobs I can't do myself. Mike has too. Funny how one project always leads to another. Jordan doesn't mind so much. He would smile when the guys were making loud noises on the roof.

In the meantime, we are just trying to hold steady with Jordan & his seizures until the 10th & hopefully the docs will get him going on the keto diet so he can start to find some relief & hopefully cut down on the meds.

Jordan's toys

Jordan has been doing well. He still has seizures every day but not needing medicines to stop them as much. He has been happy & alert and the klonopin seems to still be working to stop any break through seizures when they happen. His teachers brought over a new toy. It is a switch operated airplane & he loves it. It's a big boy toy. We also have a switch interrupter for any other of his toys which are battery operated and single activation . I can put on the interrupter and he can operate it with a switch. It is just very hard to find toys he likes that work. He snubs the "baby" toys, and rolls his eyes. I will update his wish list soon & put a link to it on this page.

Fair day

Jordan loves the fair. I took him Friday & Sunday. He had lots of fun. He was very interested in the loud chicken house (his eyes got real big) and he liked to pet the bunnies, So did I.
His brother won him another frog. He had a couple small seizures but they went away fairly quick. He was trying to fight them away all morning, then daddy decided to take him down the big slide. I didn't get a good picture of his expression, but the last big hill on the slide he was very surprised & started to laugh. Then he had the giggles the rest of the day.
Sunday was a very good day for Jordan. He stayed awake & alert. The couple seizures he had didn't last to long & I told him to just let it go & we were not going to leave so it was ok. It was so nice to see him having fun & happy again. In the first frog picture he is eyeballing the big slide.

doctor appointment

Jordan's Topomax was increased again. I explained to the doctor how I am losing faith that the topomax is going to work and while she agreed with me, she wanted to try this increase and get a topomax level drawn. She explained how changing to a different medicine may help some of Jordans seizures but it would make the other type of seizures he is having worse.

We are all in agreement on the ketogenic diet however, the nutritionist who works with this diet is still on leave but another appointment was scheduled for October 10th to follow up & meet with the nutritionist and work towards starting it. When the diet is started Jordan will have to be admitted for a few days because it is such a drastic change in the type of food he is used to. This wait will also allows some time to monitor the latest topomax increase for effectiveness.

It was not the answers I wanted to hear. I was also told that when the seizures become as unmanageable as Jordan's has, they are very hard to get controlled, even with the diet it still may be difficult. In other words the prognosis of being able to control the seizures looks bleak.
The type of seizures he has is simple focal and spasm.

I am having a hard time accepting the fact that Jordan may have to live with these. There is the diet & vagus nerve stimulation. I was told these are not miracle cures & wont completely eliminate seizures or may not be any more effective, but has worked with kids with hard to control seizures.

There is hope but as I said I am having a hard time dealing with it right now. I want Jordan to be happy again. I want to see him participate in life & play. It took a while to deal with and accept the CP, then the GI issues & trach, now seizures. I get scared. When will he just be healthy and happy. There is always a hurdle for him. Never very much time to take a breath & catch up which he is able to do but something medical keeps getting in his way. I see his frustration & it's taking it's toll on him.

We are going to the fair today. Hopefully a hair cut too.
Pray for Jordan. I know God loves him.

Seizures started again

Yesterday Jordan was having more seizures. We ended up giving him Klonopin at 11:30 and he slept the rest of the day away. He woke at about 5:00 p.m. and was up in his chair playing with his brother, mike & me with his switch toys. While he did crack a few smiles & seemed in a good mood, he did not interact with his toys. I don't know if he is bored with them or just wiped from the meds & seizures. He fell back asleep in his chair at 7:30p.m. & went back to bed. He woke a few times coughing & needing suctioning. Justice has had a cough for a couple days so I don't know what we have brewing here. Just a cough, no other symptoms. Lets hope it stays that way w/both of them.

Over night he did have some more episodes & had even more this morning (he is still on his klonopin doses) It went on for over 20 minutes & we had to administer Diastat. It is such a hard decision knowing how the Diastat makes him feel. He looks really bad when I have to give it. I hope it can make him feel better after a nap. I decided it was best to give it rather than have him continue to seize & be wiped out from that. At least with the Diastat there is a chance he will feel better in a while. He also has his follow up appointment with the epilepsy doctor tomorrow. As I mentioned before, if he is going to have seizures & not respond to his therapeutic seizure meds, it is better to happen now so we can come up with a plan during his appointment.

His appointment is later in the day, at 2:00p.m. so I may not get an update posted until late.

8/27-9/2

It has been a while since I posted. I don't even know what I did this last week. Justice was in school. Jordan was doing well with his seizures until this past Thursday, then they started up again. We did have to give Klonopin. We have been getting him out & about, my internet was down for a couple days, and we switched digital phone service so, family & friends please call my cell phone or e-mail me for our new phone number.

Jordan will be going back to school September 10th. I feel it is better for him to be there, and his teachers & therapists are able to see him more when he is there. Next week is the fair, I am getting a season pass so the boys & me can go a few different days & not have to rush through. Then we will go with Mike over the weekend. Mike put a door in the upper level of our house. Next week the elevator guys are going to start on the elevator, so soon we should be able to open that new door & step into an elevator.

Wednesday is our trip to Chicago to see the epilepsy doctor. If Jordan is going to start having seizures again, I prefer they start up now than after we see the doctor. Although I do hate to see how these seizure just take their toll on him.

Jordan saw his pediatrician Friday. We gave him an update on Jordan as to what is happening with him & pretty much just got him up to speed. Jordan did get some immunizations while we were there. He didn't even cry but he was mad, just mad about the klonopin and going to the doctor.

Saturday Jordan's nurse (Diane) and myself with Jordan & Justice went to the outlet mall. It was a nice day to be outside & I had to get the boys out of Mike's hair while he worked on the door. We had a good day, Justice got some treats and Jordan was grumpy until I bought him a cool new pair of shades. His mood changed instantly & he did not want to take them off the rest of the day.

So, that is what has been happening, it will be nice having Mike home an extra day this week.