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.

Happy boy

1 week and no Klonopin. Wow. I am so thrilled & nervous at the same time. He still has seizures daily but they go away on their own after 5-10 minutes. He is becoming more alert & HAPPY! He had the giggles the last couple days & it is such a joy to see him this way again. He is so much fun to play with. I love it. We are still going to go ahead with the Keto diet because if it works we should be able to cut down on some of his daily seizure meds & be not so sedated.

I have not posted in a while because the daily seizures & watching them suck the life out of him was getting to much for me. It was the same thing day in & out. It is heartbreaking & although I am an open book most of the time, I just didn't want to share the sadness anymore. I am glad I can share some joy for now.

Mike & I went away last weekend to Lake Geneva. A much needed mini vacation just the 2 of us.
The Willow Tree Foundation Helped fund the trip. We wouldn't have been able to go otherwise. I actually managed to schedule 24 hour nursing, and justice went to his cousins house & had a great time. Mike & I went horse back riding, had a wonderful dinner & visited wineries. Spent a lot of time putting around deciding what we wanted to do since we didn't HAVE to do anything, it was kind of strange. But we easily adapted. I missed my boys but was not worried for a second, just missed them. That was a different feeling too. Jordan was mad at me when we got back & he gets mad when I go to work now too. He is adjusting and geeze, I only work for about 5 hours a day.

Justice is settling into kindergarten finally. He is his happy self again. Jordan is used to me leaving for a few hours for work and happy when I get home. Mike has a very bad cold & I am going to quarantine him, he just doesn't know it yet.

Things are going rather well here. Uneventful, which is just the way I like it. I am also doing better myself. I needed the weekend also, and I am always better when Jordan is well.
No school today or Monday. I will be wore out by Tues, just in time to go back to work & unwind.

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.

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

It worked

To my amazement the pheno change seems to be helping. I really didn't think it would since the dosing is the same but I guess I was wrong. I don't mind being wrong on things like this. He has had some slight twitching only lasting a minute or so.

The only drawback with having an a.m. dose is he is sleepy. I hope he can adjust better to the medicine and not be to sleepy when school starts, (august, 22) If it is a problem I can always bring it up to the epilepsy doctors.

Jordan is otherwise well. His daddy left for his last day at the builders, and starts his new job tomorrow. He is awake in bed getting his morning medicines, and lets hope & pray for no seizures.

Daily seizures

Jordan's doc called back & the earliest they can get Jordan in to the epilepsy clinic is September 5th. Too long in my opinion. He needed Diastat again yesterday. What appears to be happening is Jordan is now having seizures almost every day. The ones which require Diastat are more intense and last longer. After giving Jordan the Diastat, he sleeps for a while then wakes up sleepy but more alert. For one to two days following Diastat, Jordan still has the same seizures. They are just less intense & start to ease after 3-5 minutes. By day 2 after Diastat, the seizures gradually increase in intensity & frequency until day 3, then he will just have seizures & sleep if I don't give him the Diastat.

I mentioned to the doctors office that I think September is too long to wait. Doc said to split his phenobarbital dose so he has 30mg in the morning and 60mg in the evening. Although this may help a bit, it is still the same dose & the phenobarbital is obviously not working. I was told to give the pheno change 2 weeks, and check back with the office. Not acceptable to me.

I called every children's hospital with an epilepsy clinic in chicago & they all have even longer wait times. Today should be a good day for Jordan since he still has some Diastat in his system to keep the seizures down. I will try and get him out & about.

I have thought of taking him to the ER with the next bout of seizures come Monday, but they will most likely treat him with medicine (like I am doing with Diastat) and when the seizure stops, send him home with instructions to call his neurologist. I will be calling the office again Monday to try to get in earlier. I was advised to call the office everyday but I have already been told to give the medicine change 2 weeks.

He has not had an EEG in a while. I want him to have a 24 hour EEG, there are other meds and treatments for this. It is not fair that Jordan should have to suffer.

Epilepsy

I spoke to Jordan's Neurologist's office & he wants to increase his evening dose of Topamax by 25mg. He also is referring him to an epileptologist. I should be hearing back this week or I was told to call back by Wednesday. Doctor is writing a referral letter with history & explanation of what has been going on with Jordan.

For reference; epilepsy-these links help to describe things better than I can.

Jordan did have another episode this morning & I am concerned for him. I hope the office calls soon to have Jordan see the new specialists. I did express a tone of urgency, I usually do not overreact, but I mentioned these episodes are worrisome.

God did answer our prayer in that Jordan's doctor is wise enough to send Jordan to a doctor who specializes in his condition. I was worried he was going to want to try more meds, or different meds (many past docs do that), That can take a long time & take a toll on Jordan. We don't want him sedated, there has to be a way to treat these seizures so Jordan can still be alert & active & able to enjoy the life around him.

Well, I have to sort through my thoughts & notes & put together information for the new doctors. They typically have tons of questions and it is best to be prepared. I outline a brief history, explain the episodes, note dates and severity of episodes & just try to give them a easy to follow chart with any signs of patterns or not. I'm confused just thinking about it. I'll sort it all out though, I always do. And now I have the help of Jordan's nurses to help me sort through all the notes, dates & everything. They are awesome.

I will update with any big news, feel free to drop an e-mail even if you just want to check in. Jordan has been good this afternoon. Not as active as we like but awake & aware of whats going on. He is coherent & comfortable. I may take him to Justices soccer camp tomorrow. He was giving me a sad face today & making big sighs. I went through a list of "what's wrong, is it....???" And when I got to , "did you want to go to soccer camp?" He stretched his legs, banged his arms & made a funny face, that was a yes.

Still have seizure problems

He had a few more today. One was mild, 2 were pretty bad but at 5 minutes they started to ease and taper off. He has been quite sleepy. He does wake up & is alert but not to active. Any other ones I noticed were quite mild and only lasted a minute or two.

For Jordan, a mild seizure is when just his head is slightly twitching & the corner of one side of his mouth, it only lasts a minute or so and is not a very strong twitch. Any stronger or bigger type of seizure would be as strong as the twitching would be, and has also included his one arm twitching or a tremor. When his body becomes stiff with this twitching taking place, I consider it a more severe seizure. His eyes also dart and move to one side and his may smack his mouth. By neurological standards it may not be a major seizure as it is not convulsive, but it is bad for Jordan's standards.

I did put in a call to the doc & should hear back tomorrow. I have not had to give Diastat yet today, but if he has any more I will have to. He has been in good spirits, giving me such a sweet smile. But I know these are tough on him.

Jordan does have a nurse scheduled tonight so someone will be here & awake to watch over him. Say some prayers for our little peanut, that he can overcome these episodes & his doctor takes care of him and gives Jordan what he needs, so he can go back to enjoying life without worry of having fun causing a seizure. So he can be awake & alert to see all that is around him and still have the strength to participate & play. Scroll down & look at that big giggly laugh in the zoo day post, there is a picture, on the way home he had the giggles, thats what I want to see.

Much better today

Good morning. Jordan had another restless night but, he did sleep all day & with such a big seizure he may have been uncomfortable. His night nurse gave him some Tylenol which she said seemed to help. He woke up good this morning, asked for his teeth to be cleaned (by smacking his mouth) and has been alert, active & very happy. Look at those numbers on his pulse/02 monitor. Can't get any better than 100% He is watching wonder pets & very content. He did have the dose of Diastat yesterday & typically when these seizure episodes come in waves, the diastat will last into the next day.

Tonight, we do not have a p.m. nurse scheduled so I will have Jordan in bed with me. He's snuggly. I will be gone this afternoon getting my hair cut & a long overdue visit with my sister in law.

update for Jordan

Jordan is a bit better now. He finally woke up & has his eyes open & looking at me. He is much more alert and sitting up in his recliner. Not as active as I like but he has not been all that active for months. His brain/seizure activity seems to have returned to his normal although, there is still Diastat in his system. We will keep watch over the weekend & keep updates as they occur. For now he is doing well.

Staying home today

Jordan had a rough night. He was uncomfortable, grimacing and restless a good part of the night. He had more bowl movements & they were large and not him norm. He woke late this morning and seemed to be gasping & scared. His stoma by his trach has a red spot. We changed his trach to be sure he was ok, and gave him some cuddles. He began to have a different type of twitching & tremors. He did have another seizure. The last couple days he has not been quite himself but not enough to say what or if anything was wrong. He did have some increased twitching yesterday but they would go away on their own, he was also unhappy.

Sometimes it is really hard to tell what is actually going on. I don't think he is sick at this time. But something with his brain & seizure activity is happening. I called his neurologist & he won't be in until Monday. I would rather wait it out until Monday since this doctor knows Jordan & his history. I would not want someone else adjusting his medicines, which is what it is looking like what might be needed. We gave him Diastat this morning & he is resting comfortably now.

We all hope & pray for no more episodes this weekend. This morning was different than his usual episodes. I am not sure what could be going on with him but I will defiantly be consulting his doc on Monday. I have the weekend to get my thoughts together, go through old notes & hopefully by Monday after talking to doc have a plan to help Jordan.

I started this blog this morning. Justice has been a computer hog. It is now 3:30 p.m. and Jordan is still sleeping. He was up all night & did have a seizure & diastat which is enough to make anyone sleep all day. I will be keeping a close eye on him & hope he wakes up later, or gets back to normal by morning. If not he is going to have to go to the hospital. I don't think he needs to yet, but as I said these episodes were a bit different.

Right by my side & sounds

Since I have been spending a bit more time on this computer, I thought I would share my beautiful view I have as I am typing here. I just have to turn my head a bit to the right & this is what I see. A big smiley boy, trying to get my attention, and usually successful at it.
He is in the recliner part of the couch & when it is reclined down, he is right there, by my side. The computer is just behind the couch.

Jordan has been doing very good this week. We have had no issues or seizures.

He has been wearing his PMV.
And has been more vocal. I love hearing his voice. I have missed it so much this past year. He mostly makes cooing and ahh sounds. I can see him trying to form words with it also. He is practicing very hard. He wore it for 2 hours the other day. Unfortunately it dried up his secretions. (He typically uses his HME which helps keep his airway moist and filtered.) His voice is like music, he gets a charge out of himself. He also can make sounds without the PMV. Many of his nurses say most kids with trachs figure that out.

Tomorrow we have a outing planned. We are going to be meeting up with some other parents and kids with some similar situations as ours. It is a bit far but will be a nice outing. It is at a forest preserve & we will be having a picnic. I will post when we are back & of course bring my camera.

Seizures

I did not get a chance to post yesterday. Jordan had another seizure & required Diastat. I have not posted on this blog his seizure history so here is a brief background.

In march Jordan began having several seizures, almost every day or so. He never really had seizure issues in the past other than fever or trauma related. Calls to the neurologist and increasing & adding seizure medications seemed to help them. He would still have mild seizures daily, but they would go away on their own.

After consulting with his neuro doc, it was discussed that if we medicate more to make the seizures go away completely, he would be too drugged & listless. Therefore, it was decided to keep him at his current dose, allow some mild seizures, so that Jordan may have a more active quality of life. However every other week he has had the larger seizures, they don't go away on their own, & diastat needs to be administered to make them stop.

Yesterday was one of those days. The seizure & the Diastst make him very sleepy.
He slept up until mid afternoon, then woke & was in good spirits. I will be calling his neuro. doc. tomorrow, just to see his take on things. Chances are he will say the same thing as before & I agree. Jordan has not been this active, alert & happy for a long time.

He enjoys life & takes everything in. I can not deprive him of that. I will just have to space out time frames between known stimulating environments.

As evening came, my friends came by. Adrienne & I stayed in the house to watch over Jordan, the boys set up the tents & made smores. See Justices page for his updates. After a while, the boys came in & watched movies & we adults played cards. It was a very nice evening.

Jordan went to bed around 8:00p.m. and had a good uneventful night. Today we will be going for a walk & play in the yard, something calm for the peanut.

Zoo day

What a perfect day. The weather was perfect & everyone had a great time. Jordan loved it. He liked the dolphins the best. We sat in the front row.
He doesn't look to excited in the picture, but once I put him back in his chair, he could relax & watch. Every time a dolphin would jump up out of the water, he would turn his head & watch it. When they were up on the island in the middle, he would watch them then. I have never seen such good tracking from him.

Some of the far away exhibits were difficult for him to see & find the animals. We did see some where he could find them, usually the bigger animals. The giraffes, he could see & would watch them. At the petting zoo he could see the goats because they swarmed him.
(goats like wheel chairs)

He touched a leopard fur, when the zoo person was near & all the kids were touching the patch of fur, Jordan held his hand out, then he wanted to touch it again.

We went into the butterfly tent, (which no one was excited about but me) and a butterfly landed on Jordan's toe.
There was a family play center, and a kids chat about snakes. Jordan touched a snake. That got his attention. He was awake the whole time except for a few 5 minute naps, we would be walking along & all of a sudden I would see flaying arms & kicking legs. I would stop to check on him to see what was wrong & he would be laughing. He was so excited & happy. I have not seen him like that in a long time. He had the giggles the whole way home.

It was wonderful to see him that happy.
It really made my day.

I will post Justices zoo experience on his page, there is a link to it over to the your left of this page, it says justice michael, just above the archives.

I can not wait to plan our next adventure. To see my kids that happy is all I could ever want.

Zoo trip planned

Jordan just left for his last day of summer pre-school. He was all smiles & happy. Tomorrow we have a big day planned. Daddy is taking some much needed time of work. We are all going to the zoo. The whole family! I am so excited. We have not done anything like this, all together in a very long time. Look for lots of pictures & a recap of our day. The weather forecast is calling for a wonderful day. With the whole family together it is bound to be wonderful anyway.

Post Tracheostomy

It was less than a week post tracheostomy & Jordan began healing & doing much better.
Jordan came home August 30th. Life as we knew it had changed. What followed was a long winter of more illness & hospital stays. Mostly respiratory & tracheal infections. Jordan also started having more seizures without having fevers. Medication, and some time seemed to help those issues. Late October began nursing help which was a disaster until I switched agencies in February. I am currently still with that new agency & it's working out.

Over time Jordan became more stable. His seizure med's & breathing treatments have been changed. It seems we have finally found the right mix. I was now able to focus on his development again. I had since requested a lowering of his Baclofen medication, which will increase his tone but allow him more strength & less sedation. He seems much more happy & alert.

Jordan still has a GJ tube & receives all nutrition & medications through the J-port. Only his stomach med's go into his stomach. It has been decided to just let Jordan be healthy for a while & address the stomach issues later. All tests and scopes come back normal. There is no answer to this day, as to why he can not feed through his stomach, but he is getting enough nutrition and he is happy & healthy.

My how perspective has changed. Jordan started out with a diagnosis of Cerebral palsy, reflux & a g-tube. After the fundo, everything was great, for 2 years. Then, it was a long agonizing year of unexplained vomiting and respiratory illness & surgeries. I just wanted Jordan back to the way he was. I had finally come to terms & accepted his challenges, and how life would be for him. Then it has all changed. I looked at it as he was getting worse. Until I saw how he gained weight. In fact he became overweight & we had to cut back on feeding. I saw how once the winter season ended, Jordan became more stable. It was easier for him to breath. He didn't have to work so hard. He needed time for the trach to do it's job. He needed time for his body to adjust to his environment, everything was different. He needed time to heal from so much time of being sick.
Jordan has finally become healthy.

Tracheostomy

Tracheostomy. That was the end result of a summer long hospital stay. I could go into the details of all the tests & procedures leading up to it. How the doctors tried every other option to avoid it, but many of those details are also a bit of a blur. Even to me, who knew nothing of what a tracheostomy was, I knew it would help Jordan. He was not getting better.

July 26th he had a T&A. Because Jordan was so sick & unstable, he did not fair well coming out of anesthesia. Another memory I have of that summer, is seeing my peanut not take a breath on his own. He was intubated, and used a ventilator to breath. He has several bronchoscopy's, these showed his airway was not healing from the previous surgeries, the tube in his throat was continuing to irritate the site. When they would reduce Jordan's sedation, he would become agitated & move about making the healing process more difficult. When he was sedated, he wouldn't breath. The only way to move on with the healing process was to place a trach. This happened the 2nd. week in August 06.

Spring 2006

All was good for two years. No vomiting. My only concerns for Jordan in that time were leveling his medications, getting him to therapies, and trying to get him to feed orally. Then, in April of 2006 he suffered his first pneumonia. For the next two months he would be a sick little boy. He had his first fever seizure.

Some of the times between April & August of 2006 are a blur, but some things are etched in my brain forever. The day he had that seizure was one of those. I took him to the ER, an hour away because the local hospital could not take care of his complex issues. I was alone with no help and had to bring Justice with me. Justice is the reason I can't forget it. He was so scared for his little brother, he didn't even want to look at him. He turned down a Popsicle, and just wanted to "run away" I had to give doctors information, medications & history while Justice was in a near panic. Because I had to keep him from running away, I could not be there for Jordan. He was being treated at that time. I remember standing in the doorway of Jordan's ER room, Justice clung to me all arms & legs, with about 5 people trying to get information from me.
After they finally got Jordan stable, I told Justice "Jordan was ok now" & then he went in his room. He still didn't want to look at him but he glanced to be sure he was still there.

During the spring of 2006, Jordan was in & out of the hospital. On June 16, he began vomiting again. Which led to more hospital visits. More pneumonias, more fevers, and changing doctors. We were given oxygen and a pulse/02 monitor. His vomiting never stopped. I had thought he needed the fundo repaired. While trying to get answers to Jordan's GI issues, his respritory issues began to take precedence. Because he would not keep any nutrition down, they gave him a
picc line and he received his nutrition TPN.


Eventually he had a GJ tube placed. He was sent to Chicago to have it placed. Jordan was home for about a week and the catheter recoiled.
The food was being fed to his stomach again, so naturally he began vomiting. After being in the hospital for so long, and continued vomiting, when the catheter in his GJ tube recoiled again, I had him transferred to Chicago.

This began a two month stay in Chicago. A team of specialists looked at all of Jordan's conditions but again, respiratory issues took precedence.

After the fundo

Jordan recovered well. He was in the hospital 2 days. Tylenol was all that was needed for pain and he handled his feedings great. Of course we had to continue slow feeds, with such a fresh procedure but in time, a gradual increase would bring him to a calorie intake that was close to where he needed to be. His stomach would only handle a certain volume at a certain rate (can't remember the particulars) As time went on the rate and volume would increase.
Jordan began gaining weight. Jordan stopped screaming. It was a miracle.

After several g.i. doctors, and several more neurologists, we had a new treatment plan for Jordan.

Jordan received early intervention services consisting of speech, physical, occupational, developmental & vision therapies. Each of these were once a week. The newest G.I. doctor was added to Jordan's care team just recently in June 07. His present neurologist has been a part of Jordan's care team for quite a while. I was not only seeking specialists who were talented to care for Jordan, but also who gave it to me straight. So many doctors sugar coated the reality of Jordan's injury and the time had come I needed to realistically plan for and manage Jordan's care.

Through Jordan's neurologist, we were referred to a physiatrist. This doctor manages Jordan's Baclofen. She also helps piece together Jordan's many issues. Because Jordan has so many specialists, therapists & complex conditions she picks up what falls through the cracks.
The physiatrist is the doctor who diagnosed Jordan with cerebral palsy.

Once Jordan's reflux issues were resolved, we were able to focus on the rest of Jordan's challenges. As hard as it was to hear, finally having a diagnosis actually helped me to understand what we were dealing with and how to go about managing Jordan's health care.

The Fundo

After several weeks of vomiting, Jordan was not gaining weight. Doctors use a growth chart to track weight, height & head circumference. Jordan's doctor explained, where my child is on the growth chart is not as important, as long as there is steady growth and that his growth progress follows a curve. Jordan was dropping off the chart. We were told he was showing failure to thrive.
A surgery to stop the reflux was recommended & we went for the first consultation.

What this surgeon described was not what I had thought it would be. He spoke of an incision & wrapping his stomach around his esophagus. To be honest, I did not hear much after incision.
The procedure is called a Nissen Fundoplication. Because of the harshness of the description, I set out seeking a second opinion, a better way.

I was unable to find any other procedure to resolve the reflux, but I did find a surgeon who performs this procedure laparoscopic. Much less recovery time involved as well as less pain for Jordan. The surgery was performed July 20th, 2004. Jordan was 5 months old.

Reflux

As time went on, while trying to teach Jordan to bottle feed, and compensating with g-tube feeds for the lack of nutrition he could orally take in, he would vomit, more and more each time. Hours of oral feeding would come up in seconds. We did not have a pump at that time for tube feedings. We were feeding with gravity, and we did not have any extensive training with tube feeding. We had to figure it out on our own. Jordan had to be slowly fed, a little at a time with breaks in between, just to ensure his stomach could handle the volume & keep the food down. We were feeding 30cc (1oz) every 15-20 minutes.

Finally, after a few months of this (about 2 or 3) he was diagnosed with reflux. It all made sense now. Well, some of it made sense. After trying several different reflux medications, he was finally prescribed Prevacid and my little screaming infant had finally found some relief.

To think, all this time he was in pain. Absolutely heart wrenching. Who would know that this was only the first of many heart wrenching realizations we would come to.

The prevacid helped ease the pain but, did not stop the vomiting.

2/16/2004

The happiest and most sad day of my life. My beautiful baby boy came into the world.
Due to a ruptured placenta, his oxygen was cut off and he needed to be born emergency c-section, 2 weeks early. It was the first time I heard the words ....
Hypoxic Ischemic Encephalopathy I was told he may have some brain damage. I am still learning how severe it is. He was immediately sent to another hospital 2 1/2 hours away. I had to remain behind in the local hospital.

After 2 weeks of testing & treatments he was released with a g-tube & brief, basic instructions how to feed him. When Jordan wasn't sleeping he was screaming. This went on for weeks. He would scream so hard he would fall into a deep sleep from exhaustion. It was very scary & we did not know what was causing it. After consulting with a neurologist, he was diagnosed with seizures & put on phenobarbital. The medicine did not help the screaming. Also noticed at this time, Jordan would become unnaturally stiff, and arch his back. Still, we were unsure of the cause for the screaming. He had a brain injury, perhaps his head hurt. two "regular" parents had no clue of any other reasons for his unusual behavior. We knew Jordan had some problems but had no idea to the extent of the damage.

We were told very vague prognosis, not knowing how much or if the brain would heal. All we knew at that time was he lost his suckling reflex & was having seizures during these screaming attacks. We were not told what was reality.