Merry Christmas

We all had a wonderful Christmas. Jordan was so happy & excited. He did very well too. His seizures seem to have leveled off. I hope it stays this way or even get better. Recently he started a new medicine and it seems to be helping so far. We need a bit more time to tell the true effects but, so far so good. Here are some pics.

Jordan update

Things have been pretty good here. Jordan is going through medication adjustments, so there are ups & downs with him. His phenobarb is being decreased while his topomax is being increased.
One change I have noticed is he is sleeping very well at night. The goal is to completely wean him off the pheno. He still has daily seizures and usually two rather intense seizures each day. None have needed rescue meds and they typically taper off on their own. The weaning process will take a while so I am sure there are changes to come, hopefully in a positive direction.

Jordan still takes a few naps a day but I think he is more alert when awake. His new favorite show on tv is sponge bob. Jordan rolls his eyes at "baby shows" now. No more elmo or sprout. He also gets upset if you change the channel on him & turn off any cartoon. He has been doing well in his stander & chair. And playing with his switch toys. Not like he used to, but more than he has been since the seizures started.

He wakes in the morning to say good bye to everyone then, when Justice is off to school he falls asleep again for a few hours. It's hit or miss when his teachers come by to work with him. He tries so hard to stay awake in the evening until his dad comes home. And he is always wide awake when Justice comes back home. Justice is such a good brother. He plays games with him & interacts so well to include Jordan in play. Jordan loves any attention he gets from his brother.

My hope is things keep moving in a positive direction, which they slowly seem to be. I have been working when I can & now trying to stash $ for Christmas. Jordan needs toys. I should have his wish list link on this site. He has become picky, as if it weren't already hard to shop for him.

trick-or-treat

Jordan had a great time trick-or-treating. He made it all the way around the block. It was cold but he kept smiling the whole time. By the time we got back to our house his tray had 2 pumpkins full of candy (one was Justices), they were overflowing on to his tray, & 2 cans of pop. He was king of trick-or-treating last night & had bouncy stiff & kicking legs & stiff arms (he does that when he is excited) Sorry I didn't get a picture, we had a bit of a commotion with sugar brother &, had to change Jordan in a hurry (he made a stink;) Mike got home early so we all went out together, even Chewy. The boys were power rangers & Jordan liked having a big boy costume this year.
It was a gret day & was very nice to see Jordan so happy.

Jordan has been very good lately. Still has episodes daily but none which require meds, the seizures have been stopping within a suitable time frame. He had quite a few yesterday morning but I think he was excited about Halloween & he got very excited when I showed him his costume in the morning. He has been happy and more awake & alert and, participating more with his teachers. Keep up the good work Jordan!

Keto-diet no go

Jordan did not adjust well to the Keto diet. His body could not handle the formula. He had very bad diarrhea and stomach aches which began the first night of the diet & worsened as the ratio increased. When he was put back on his regular formula he was fine again. It was a very rough 4 days for him. He got a very bad rash from the pampers they gave him & they were too tight the night he had the diarrhea. It was very dry there & he needed to be on humidity most of the time which gave him excessive secretions, which he coughed up well on his own, but left his neck & trach ties wet resulting in irritation on his neck. His G/J button got tugged on in the night and almost came out & was sore & bleeding a bit in the morning and, there were repeated needle sticks to try and get blood draws which never did all get accomplished. He didn't even want to play with the cool toys they brought him. I felt so bad for him. I tried explaining things but it was just such a bad experience. It was just suppose to be a simple diet change & he suffered most of his time there. He got sad at times & of course had an increase in seizures from the stress.

The new plan is to decrease his phenobarbital, since it is so sedating, and increase his Topomax at the same time. It will take about 4 weeks to make this change at which time his seizures will be reassessed and if need be, we will start another med (Keppra I think)

Jordan is very happy he is home, in his own bed, with his own nurses who know him & what he wants & needs & who love him. I am taking the day off today to clean my home & regroup my brain. I am a bit discombobulated. I am upset the diet didn't work but more so about what he had to go through the last few days & not sure how much he understands of all of it. I very rarely see him cry & he did quite a bit this week. He is happy & content now & I just need to move forward & focus on the next step. Keep saying prayers for Jordan. I know God hears the prayers & loves Jordan.

Jordan update from appointment

This will be brief as I got home late & am tired. Jordan starts the Keto diet Oct. 22, Monday. He has to be admitted for 3 days for monitoring. Not much else to update but it was a long day.

Update on Justice's page

I posted a Justice update over on his page. I will post here about our appointment today, when I get back later.

They're back

Yesterday after Jordan woke for the day he started back up with the seizures. I was so bummed. I thought we hit a milestone or something. I don't understand why they would get better for a whole week & then start up again. I had to give Klonopin yesterday at 1:00 p.m. 2:00 a.m. this morning and at noon today. Frustrating. The happy alert playful Jordan has been replaced by the spacey, withdrawn, hooo humm Jordan again. I hope my persistence with the doctors works tomorrow. I want him started on the keto diet asap.

Justice has been sick, wouldn't ya know it. He had a fever this weekend and an earache. His first earache. He says he still has it a bit today so I am not sure if I am going to need to take him in. Good thing he didn't have school today. It gave him an extra day to get well. Mike was sick too but he is better now. He didn't mind me telling him he was not allowed to suction.
Wish Jordan luck & say lots of prayers for tomorrow.