1 week no (major) seizures

Jordan has not needed any klonopin or diastat in a week. The 20th was his last dose. He has still been having flinching & twitching episodes but, not as severe or as lengthly as before. It would be nice if he just needed to be at his current topomax dose. I am hoping this is the case and they wont start up again. However, this morning he did have a larger twitching episode. That is how they started up last time we had a topomax increase. It worked for a while then they came back. I suppose it is better if they come back now so we can address them at his appointment on the 5th.

For the last week Jordan has been getting better day by day. He has clearly let me know he wants to go back to school. He has been staying awake in the morning, and has been gradually becoming more alert. Yesterday was his best day by far. His teacher brought over some toys for him & he was activating a switch. He shows preference in toys. The switch was controlling a butterfly that vibrates & plays music. He preferred lightning McQueen, which he had to operate manually. He has always let me know he doesn't like baby toys.

Today, Mindy was holding him up with his feet on the floor and he was supporting his own weight. He would do it for quite a while then collapse his legs, take a break & put his feet down to do it again. He did this several times. He actually was over working himself. He wants to get better. He tries & tries when he is awake & alert & not overrun with meds. I am starting to see his fighting spirit again & will to be a part of life.

I just want the seizures to be managed so this Jordan, that I saw yesterday will be himself. After this mornings episode I am prepared if they come back & knock him down again, but He is defiantly showing me what he wants. I called the special ed director at his school to get him back in school. They just need to find him an aid, and she wanted a doctors note which I will get on Friday, Jordan will be seeing his pediatrician.

The 5th is not only Jordan's follow up with his epilepsy doctor but, also the start of the Sandwich fair. I plan on getting a season pass this year & taking both of the boys.

Go to Justice's blog

Go to justice's blog to get his 1st day of kindergarten update. Includes pictures.

Justice Michael

Our social butterfly

Jordan had a great weekend. On Saturday his grandma KK & pa pa came to visit. Jordan loved getting his grandma snuggles. He was giving sad faces when it was time for her to go but she promised she would be back next weekend & he seemed ok with that. He loves to look at his grandma's face & listen to her soft nurturing voice. Jordan loves having visitors.

On Sunday, we went to the museum of science & industry. Jordan had just woke up when we initially arrived. Waking up is very stimulating and difficult for him but then we were in a crowded museum and he had a pretty big episode. We went into a quiet area and told Jordan we have all day you take as much time as you need to adjust. After a short while, he began to calm & enjoyed his museum trip. He had several smaller episodes but he managed just fine.

He got excited walking through the train area & the area where the plains are hanging in the air (because they are easier for him to see) There was a lot of visual effects & big body parts hanging up high where he could see also. He was giving everybody smiles and happy to be out and about again among people. Today was a rainy day & a good time to show Jordan there is more in Chicago than just hospital's & doctors.

I want my Jordan back

Jordan is still having daily seizures & needing some sort of medicine to stop them. He has brief moments where he is awake & alert but only for an hour or so at a time. I feel these seizures are taking his life away. The seizures them self make him tired & I know he is angry & frustrated about them. Occasionally he tries to calm himself & make flinching & twitching go away. He gets a facial expression that looks grumpy & if he allows himself to show or feel any excitement, it sets him off into big flinching episodes (myoclonus seizure) followed by twitching,& sometimes shaking & eye darting (cluster seizure)

The epilepsy doctors office called back, increased his topomax again and said to only give the Klonopin & Diastat for the bigger seizures. All 3 medicines increase tiredness. I inquired about the Ketogenic diet. The doctor had brought this up at his last appointment & will have the nutritionist at his Sept. 5th apt. to hopefully set it up. I am hoping & praying, this will help to relieve him not only of his seizures, but also some of these medicines he has to take therapeutically. My baby is drugged. It sounds harsh but that is the point this has all come to.


I want my Jordan back. He has been withdrawing, not as interested in play & sleeps most of the day. When he does play those small glimpses of the lively happy boy he used to be are very short lived. He does not bat at toys or grab objects in his hand anymore. He does react to Justice & me & his puppies & of course the key words McDonalds. He just isn't himself. I am hurting for him & I know this situation is very hard on him. I just don't know what to do anymore.

Best Buddies

McDonalds lunch date

Today I got Jordan out of the house & boy was he excited. He was sound asleep in bed and I told him if he wanted to go to McDonalds he had to wake up. He defiantly let me know he wanted to go to mcDonalds. It was quite loud & a very overstimulating environment but, at this point I figured he is going to have seizures no matter what the environment is so why keep him all cooped up. He was so happy. He was laughing & giggling the whole way in the car & ear to ear grinning in there. Above is a picture just before he started getting a bit over excited.

I swear I thought he was trying to hold back the flinching & twitching. His face became very serious and he wouldn't move. He held his breath & didn't relax until I said we aren't leaving relax. His nurse was with us (Mindy) and she saw it too, so I'm not crazy. I don't think he actually held back a seizure, but he was trying to calm himself.

Anyway, he had a great time. When we got home he took a nap & then....... You guessed it. Had to give him some Klonopin but as I see it, every time we have to give him this medicine, after the 3rd dose, he will usually start up again after about 24 hours. So we are not going to blame McDonalds, besides that makes Jordan sad, for some reason he loves going there.


Also included is a picture I snapped the other day when it was super hot, our 2 AC units were not able to keep the house cool & we were all sweating it out. I was cooling him off with a cold washcloth on his head & he was getting his neb. treatments at the same time.

The little engine that could

Thats my Jordan. He just amazes me. He had another seizure this morning. A pretty big one that was frustrating him & I think scary. It was stronger than the one from yesterday and lasted longer. I gave him Klonopin, a medicine to stop the seizure to use instead of Diastat. It has 3 doses that are given over a day and a half, so it's affects to keep seizures down are longer lasting.
After a long nap (which he usually does after seizures) he woke up and was more happy than he has been. He had a lot to say, so I put his passy valve on & he was trying so hard to talk. He is practicing with his sounds again. After such a rough morning, I am so proud of him. Yesterday after the morning seizure, he was very happy his brother was playing with him. He looks like he is sleeping in the picture, but he is peeking through. Although he gets very sleepy & does not have the strength to physically play, he does still try to interact. Not as much as he used to but he didn't have these issues before either. I think he has a lot to say. I can't wait to hear all about it.

A side note

I don't know if everyone wants me to post so many details, I know it is hard to hear. It can be sad to know all the things going on here & what Jordan has to go through on a daily basis. Some days I am a better blogger than others & can put down what is happening in proper form, other times it is just written. Whatever your feelings, I understand if you don't check in on every post. Feel free to comment as it not only is in support for Jordan, but me also to keep this blog up to date and encouraged to write. Some who come here are family members to keep updated, some are Jordan's nurses to keep updated when they are not here for a few days. Others may not know us, but I hope I can help spread awareness of what life for families is like, who have a loved one with medical needs. The day to day worries, struggles & most important blessings. I look at my fellow man a lot differently these days. No on can know what a stranger walking by is going through. Just as no one who doesn't know me or my blog could ever know my life. When I have Jordan with me, people will open the door, let me first in line. When I am alone I have got caught in the door, and been cut in front of in line. Be kind to your fellow man, you do not know their worries. Unless they are being a total jerk of course.

pictures

Wanted to add some pictures of the boys working out yesterday

Taking it day by day

So far today Jordan had just one seizure which went away on it's own. He slept for a few hours after then woke, had a smaller episode & was awake for a bit. We were trying to get him to play with us, he was happy and smiley but not interacting very much. For now we will just let him go at his own pace & try and get him up & about. He may fall asleep in the middle of all the activity but it's to be expected. He wants lots of snuggles, & nuzzles into me when I hold him, so I've been giving him plenty of those. All in all he had a good day & I didn't need to give any medicines to stop his seizures. I look forward to him being more playful and alert again.

A bit better

Jordan is doing good. We have not seen any episodes since Thursday. I have instructions on what to do if he has any more. As I said we should know the results some time next week. With those results we should have a new plan. I am not expecting a seizure free week, but am prepared on what to do & how to treat them in the meantime. That helps make them a bit less scary.

Jordan's home

We are home. Jordan had a 24 hour video EEG and we were able to catch quite a few episodes on the monitors. Jordan also had a ct scan done when his EEG was finished. Just before that, he did have a pretty big seizure requiring Diastat. We left and had a good drive home with no traffic issues. When we got home Jordan was continuing to have more seizures. I placed a call to his doctor and she said to give another Diastat, and Klonopin (another med to stop the seizures.) She also increased his Topamax again. So far he seems ok, no seizures but very sleepy.

He did good during the process. He didn't mind it all so much but was sleepy from the seizures & medicines. It seems all he does lately is have seizures & sleep. I was told it will take a bit of time to go through all the results & the doctor will call back with the findings. Most likely not until next week. The picture above is when he was having his turban taken off & he was getting excited, he started laughing and knew he was going home. He did get a bit perturbed when we tried to put him in the ct scan machine, then I think he got scared & shortly there after started with the seizure. All is good now. The medicine stopped the seizures & he is resting comfortable.

One more day

Since this day is about wound down I only count tomorrow. Jordan is scheduled to be admitted Wednesday. The person on the phone said he should be discharged Thursday morning. (if life only worked that smooth) I was also told they were trying to squeeze in the CT scan (I know better) I am hoping for at least a Thursday afternoon discharge. Providing all goes smooth that should be the plan. I am trying my best to have a back up plan just in case. Last year caught me off guard.
I have 3 meals made, some in the fridge, some frozen, the house is mostly clean & laundry is caught up for the first time in months. I have my name on the list at the Ronald McDonald house, And I am just trying to get through tomorrow. Jordan has been doing a lot of twitching & I just want him to be seen. We are as prepared as can be at least through Thursday. Hopes are that is all we need.

The 3rd night nurse who was suppose to start tonight had a change of heart on working nights, so I am short again. I was so looking forward to sleeping every night. But I guess that to will come in time. Once we can get Jordan's seizures under control my next life obstacle is getting Justice to bed at a decent hour and on a sleep schedule for school. He is quite the night owl lately. He's up right now and it's 10:15. He was up at midnight last night. I better get a handle on that. He is up at 7:00 a.m. at the latest, I don't know how he does it.

I have limited access to a computer at Children's so I will post when I can. The computer room closes at a certain hour & there is sometimes a wait during the day & only a few computers, I will do my best. We will be leaving early in the morning Wednesday so just watch this blog. It will be the first updated.

A plan of action

We went up to Chicago today to see the epilepsy doctor & she was awesome. She took a very detailed neurological history from birth to present. She ordered a 24 video EEG and a ct scan. Jordan will be inpatient next week for these tests and other monitoring. If there is an opening in the epilepsy center at the hospital Monday or Tuesday he will be admitted then. Doctor said if there is no opening, she will admit him Wednesday. I thought she said he may be there a week however, I may have misunderstood. I am unsure of the length of time he will be there. When the office calls next week I will ask.

I feel very relieved that his seizures are being investigated. The seizures have become worse, and more frequent and the Diastat is starting to lose it's effectiveness. She also gave me a plan to care for him until his testing next week. She changed his meds a bit, and added another medicine to give if he does have anymore seizures over the weekend.

After the testing, we will start to work toward taking him off the phenobarbital (which makes him sleepy) and onto other seizure medicines which should be more affective for his type of seizures & wont make him so sleepy & drugged. There are also other treatment options discussed but wont be looked into further until we have more information next week.

As I said I feel very relieved that someone is looking into his problems & looking for a solution.
Keep saying prayers for Jordan. He just wants to be sociable and play again without having to suffer a seizure, and without being to tired to play & interact. I will post info as I receive it.

Epilpesy clinic Fri. a.m.

Jordan had more seizures yesterday & today. I called the doc & Jordan will be seen in epilepsy clinic tomorrow morning.

Mikes new job is great, the stress has been lifted off his shoulders. And....

I met Jordan's new night nurse today. We should have all nights covered now.

Have you guys been praying?
Thank you