End of Summer Pics

I just realized it's been 2 whole months since I have posted!!! I knew it had been awhile, but where does the time go?!? We have a lot to update on Jackson. I am in the process of writing a lengthy blog update, but in the meantime here are some pictures of Jack on our recent end of summer trip to see family in Missouri.












(Sorry Jack...he was so tall he would only fit behind the "girly" flower with the pink butterflies...he loved peaking his head through.)



(All about the park at Grandma and Grandpa's in KC)

Obsessed with water

These are pictures of Jackson this week before the EEG. This child loves the sink, bathtub, anything with a faucet. We now have a stool at the kitchen sink and after each meal, we walk him over and he climbs up and washes his hands. Now, I just need to get him to like having his teeth brushed!

At Home EEG

Pictures with Jackson and his head wrap. We tried to accommodate the box around his waist as best as possible. However, I have been mostly carrying it around as he moves around the house. He is trying to wash his hands, but his stool is not there for him to climb up on, so he is trying!!!

We began the EEG on Wednesday at 9:30. I was impressed with how fast the tech was able to get Jackson all hooked up. We were in the office and out with computer, video and Jackson with his head wrap in less than an hour. We made it home and as soon as I set him down, he had the entire head wrap pulled off!!!! Luckily, the leads stayed in tact, so I used 1 of the 2 additional head wraps given to secure everything again. She did not tape his skin, but at that point I decided it was the only way. So he was all taped up too. Then 15 minutes later, he begins having diarreah. Fun, fun stuff!! He still has it today, so may be taking him to the pediatrician once we get this off.

It is so much easier having the long EEGs in your home. Our circumstances were a little more difficult since we are in the process of moving out, but otherwise it is much better than being in the hospital. The only hard part has been keeping Jackson hooked up to the video. It is almost impossible unless he is sleeping. He won't stay in one area and the video monitor does not adjust that easily and is big.

Long Overdue

Well, before I get into everything...I have AWESOME NEWS...Jackson has been seizure free again for 21 days!!!!!!

The last time he had a seizure was on, Tuesday, June 23rd. We had the whole crazy vigabatrin wean drama...where he went from 2000 mg to 0 in the course of 5 days! We do not want to be in that situation again. I ran out of Vigabatrin on Monday, June 22nd. He got his last dose of 250 mg that evening. Tuesday was his first day to go without. I did see a slight increase in seizures to 5 total for the day. Then on Wednesday I did not see any all day! I could tell he was detoxing though...he would not sleep at all during the day. Then when he would sleep, he would wake up quickly and whimper a little. It was not at all like himself. However, that Wednesday and Thursday he was so alert and happy...laughing all the time!

Then the Vigabatrin came in the mail on Thursday...FINALLY! However, I was hoping that since Jack was already weaned and doing great that we would not have to start this medication again. I called his neuro in Houston, and even though he was seizure free he wanted to go back up and wean over the next 3 weeks! I was a little reluctant to mess with seizure freedom, so I also checked with Dr. Chugani who told me there is not right or wrong, but it is the safer way to go. They know best! So with faith, we went back to 250 mg in the am and 500 mg in the pm for a week, then 250 mg and 250 mg for a week and now we are 0 and 250 until this Thursday and then NO MORE VIGABATRIN!!! Jackson is so much more alert and happy with out this med. It is so nice to see him come off a medication and find out that he really did not need it.

Our Neuro also wants us to come off the Phenobarbital in August. Once we are off the Vigabatrin, we will wait 2 weeks then start the pheno wean. We may add something else, or we may just leave him solely on Depakote. His levels have finally reached a therapeutic level and seem to working!!! Thank goodness! It was a little scary as prior to surgery medicine never worked for Jackson, now it can! Also, our doctor is going to continue to treat his levels. This means, that as Jackson grows, if he gets his medication levels checked and they are running low, then he will increase his dose to get back to therapeutic. Before, if it was low, but he was seizure free, he would not make any changes. So this should hopefully prevent future recurrences as Jackson grows.

We will have an EEG in our house on the 22nd - 24th. This time, our Neuro, contracted a company called Digitrace. We will take Jackson in to be hooked up to the electrodes and come home with a camera and computer, etc. Then we will monitor him for 48 hours in our house and then take him back to be unhooked. Should be interesting!!! It sounds great, but what happens if something comes loose? Do I have to take him all the way to the medical center to have adjusted? Also, we sold our house rather quickly. We put it on the market a few weeks ago, and it sold before the weekend was up. We close on our house on the 24th. I don't know how I am going to handle moving, packing and watching Jackson at all times hooked up to the EEG, then get him unhooked and close on the house in the same day!?!?! Sound a little crazy? This was their only available appointment for awhile, so we took it and will make due! Everything always works out.

We are so relieved and so incredibly happy that Jackson is once again seizure free. We are just taking one day at a time and focusing on all the positives. Jack is now standing up from the floor and balancing on his own now in the standing position. The most I have seen him do this is 20 seconds. The 2nd biggest news besides the seizure freedom, is that he took 4 steps on his own on July 3rd. He went from a bench to a window, and he had his arms out to the side and balanced on those 4 steps. I could not believe it!!! My sister was with me and we were both in shock. Since, he has taken a few steps from his therapist to me on his own...but mainly he is cruising...which is much improved as well!!!

Lots of exciting things to report! Sorry it has taken me so long to update...but with the sale of the house, Jackson schedule, my work, and Tony started a new job...it has been super hectic and stressful! It's been good stress though! Hopefully, in August things will settle down a bit.

*Above is a picture of Jackson on the 4th. He is so big now!!!! Also, I have some pictures of him with his new favorite race track toy that he received recently as a gift. He loves it and you can see Jack's focus while his dad is showing him how to race the cars*

Jackson and Molly, our friend's daughter. She is 3, one year older than Jack...but he is already taller than her. ;-) She was too cute and loved giving him hugs and kisses!

Summer Fun

Jackson is doing better! Still not seizure free, but I think we are FINALLY getting somewhere. (I'm looking at things optimistically!!) Last I posted...he was having a couple a day...sometimes none. Well, they did get worse to where I would see at most 8 individual seizures a day. I could have missed a few, because they begin and end in the blink of an eye...but I am around him ALL the time. Now they are back to improving! Yeah!

Our neuro had Jack's medication levels checked every other week. Our doctors goal is to get the Depakote level to 50 - 100. We were at 20...then two weeks later it only increased to 30...and last week it was at 41. The Depakote level is taking forever to increase, because the other meds are breaking it down, BUT now we are finally seeing results. I am only seeing again 0-2 seizures a day...and we still have to get to 50 - 100 for therapeutic level of Depakote. I think it is a good sign. I was a little (well very) worried for awhile, because we were not seeing improvement. However, this past week has been consistently better. I hope in the next couple of weeks we have NONE again! Anyway you look at it...we so DETEST any type of seizure...infantile spasms or not.

We are experiencing a HUGE issue with Jack's Vigabatrin medication that we get from a Canadian pharmacy. This particular drug is not approved in the US. Well, I had ordered a 3 month supply in February. I went to reorder this month, and when I called the pharmacy, I was informed that they can no longer supply me Vigabatrin, because my prescribing doctor is an American doctor, not Canadian. I asked, "When did this change?" The pharmacist said, "2 months ago." She told me to call another pharmacy in Canada, in a different province that could send me the medication. However, Jackson at the time of this call was 5 days from being out of his medication completely. Normally, this pharmacy would only take 2 days to ship...because they would send it via Fed Ex. So, I ended up calling 8 new Canadian pharmacies...they all gave me the same answer, "We can ship to you, but it will take 8 - 21 days." I was freaking out! They only ship regular postal mail!!! No one could do Fed Ex or a rush. So I ordered...they did not even ship out his medication for another 2 1/2 days. It was a nightmare. However, Tera, Reagan's mom, gave me some "expired" Vigabatrin that she had and my doctor approved us taking it. In fact, I think it was once Sophie's, that Elaine had given her. ;-) Then I realized I would quickly run out of that...and Danielle, Trevor's mom, kindly sent me 10 tabs priority mail that they had left over. Thank you so much Tera and Danielle!

However, we still have no clue when this medication will actually show up and I do not have enough still if it was to take another 3 days. So, after speaking with Jack's neuro on Friday about the predictiment...he now wants to wean this drug. It is a rather fast wean...so I HOPE that Jackson has no increase in seizures and no side effects. This is what we have wanted...one less drug, but it is kind of scary at the same time. Our doctors do not think it will hurt Jackson, and that this particular drug is not necessary for him anymore. With this super fast wean, if medication does not show up, he will be off by Monday!!! I am a little nervous...

Besides all the medication drama, Jack's having a lot of fun this Summer. He loves swimming. We swim everyday...sometimes twice a day. He is taking lessons on Tuesday morning every week, but we are still on the wait list until September for the aquatic therapy program at TX Children's.

Some new things....Jack is starting to walk more now with assistance. He is cruising the furniture, windows, and doors...anything he can pull up on. He loves trying to stand up from the floor...and pushes off with his hands. It is quite scary as he is learning this maneuver while he is over 3 feet tall. Most babies learn this and they are much smaller. However, he really is good about protecting himself, but I still get nervous. He is also so much more alert and really pays attention when we are speaking to him. His concentration level is much improved, he is into books finally, and he is starting to play with his toys in a more advanced fashion. He is really observing them and trying to figure out how some of the toys work. He is still our "wild" little man, but more organized! We're so proud of him!!!

Prayers for Sophie

Also, in addition to prayers for Jackson, one special little girl, Sophie, (www.oursweetsophie.blogspot.com) is undergoing the same surgery Jackson had in September. However, her resection will be on the left side of her brain. Today is the first part of the surgery where the surgeon places the grids and monitors the activity the rest of the week. They will do the resection this Friday, May 29th. Sophie is such an amazing child who has done so well in development despite the infantile spasms. They tried many drugs and none were ever effective in control.

Her mom, Elaine, is just as wonderful! She is so strong and such a sweet friend. They have been so supportive to me and Jack, and even visited us when we were in the hospital in Detroit after surgery. They had come up for testing for surgical candidacy.

Elaine is 34 weeks pregnant right now!!!...away from her home outside of St. Louis...for approximately 2 weeks. Sophie was actually scheduled to have surgery in late June, but there was a cancellation and they came to Detroit in less than a weeks notice. A lot in a short amount of time! This week is going to be difficult for them, as they will not get a lot of rest and Sophie will not be too comfortable with grids. Please keep the whole Coleman family in your prayers! We pray and hope for a smooth, peaceful and successful surgery for Sophie!