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!

Update from Detroit and more...

Well, I didn't see this coming! It was not on my mind..never even crossed my mind, because we have had 7 plus glorious months of no worries!

Then...the week before we left for Detroit, I noticed Jackson "startle" out of the corner of my eye. It was so fast...seemed like the blink of an eye. I thought it was suspicious...the first thing that has even been suspicious to me since surgery. I tried to tell myself it was nothing. Then Tony saw Jackson "jump" while drinking something. Again, so quick we could not tell you exactly what we saw, but it was not sitting well with us. So, I immediately called our epileptologist here in Houston and he said Jackson's Depakote levels have been extremely low each time we have had them checked. It was 15 in February and then 20 in May. (should be 40 - 70) Before, since Jackson was not having any "episodes" there was no reason to increase his meds, however now he said to increase his Depakote, even though it could be nothing. Just to monitor him to see if we saw anymore. Dr. Chugani said the same thing.

Jackson has been pretty much the same weight since surgery...around 32 pounds. However, since his birthday, April 16th, he has gained 3 pounds and an inch in a month. So this could be a factor in effecting his levels as well.

After an EEG, one "myoclonic seizure" was captured and it is coming from the left temporal side of his brain. The actual area is called the perisylvian. A very small focus, which we knew was there prior to surgery. However, the doctors have told us all along that the major focus was on the right side, if we remove that focus, this left one could either go away or be controlled.

The last time Jackson had an EEG was February 23rd. He had some activity and abnormal spiking, but no seizures. His EEG looks pretty much the same now. The good thing is there is no sign of any hypsarrythmia (which is the chaotic brain waves associated with infantile spasms.) The seizures he is having now are different...it's a different "ball game" so to speak. They should not cause him harm in his development. The doctors are not real worried and feel it can be controlled when the med gets to a therapeutic level. We spoke to 3 different Epileptologists separately and they all have the same opinion.

One thing, Dr. Chugani mentioned is that where the focus on the left side, can affect speech and drool. Jackson does drool a lot sometimes. It goes in cycles. I always thought it was teething, but maybe it is from this area. Dr. Chugani wants us to ramp up speech therapy to twice a week to be proactive. However, after hearing Jackson, he felt better about his speech once around him.

In Detroit, Jackson had an MRI. Everything was fine and nothing looked abnormal. Dr. Chugani's team will still analyze the tracks of how the brain is organizing. I do not have this information yet.

Dr. Chugani and Ruth (his nurse) were very pleased with Jackson's progress in development. He has come such a long way since surgery. They said he looks like a different child.

As far as Jackson' s medications, both Dr. Chugani and our Epileptologist in Houston, want to wean Jackson first from the Vigabatrin, since he does not have infantile spasms and can potentially cause irreversible visual damage with long-term use. Vigabatrin is a front-line drug used for the treatment of infantile spasms. Jackson has been on this drug since last May. We order it from Canada monthly and it's quite expensive out of pocket. Then they want to wean him from Phenobarbital, which everyone knows I do not want Jackson on long-term. It can numb the brain cognitively and to me it makes Jackson more aggressive than he really is. Then they will add Clobazam...another Canadian drug. I am not familiar with this one, but Dr. Chugani said they have had great effectiveness and low side effects. So their goal is the Depakote and Clobazam.

When I first saw this happen, it really scared me and Tony. It was the whole unknown and having to relive a nightmare. I have only known the world of infantile spasms with Jackson's history of seizures. HOWEVER, after having the testing and understanding, this new road is not so bleak. Everyone is optimistic for Jackson and that it is a minor bump in the road. Just a matter of adjusting the meds. I guess if it was going to happen, it was perfect timing...right before we went to Detroit.

Since increasing the Depakote, he has improved. It does take a little while to ramp up the levels. Some days I do not see any at all. We go in this Thursday to get his levels checked again. Dr. Chugani wants us to be liberal with his 24 hour Video EEGs until we are comfortable and he is under control again.

There will be another day soon that our little fighter will be back to seizure free. I have so much hope for Jackson...that hope and belief never waivers inside of me. I realize that we do not always have the easiest road, but we will overcome this. Jackson is going to be just fine!!!!! He is still making leaps and bounds...although each day is something small...it is HUGE to us!

Also, I wanted to update that Jackson did have tubes put in his ears on Thursday, May 14th. They decided to also remove his adenoids. He did not do so great with anesthesia this time. It took him three hours to wake up and he was super fussy during that time. He seemed affected way more than when he had brain surgery, which is crazy. However, he was back to normal that evening. The ENT said they did drain a lot fluid, his adenoids were medium to severe, so hopefully he will benefit more from the tubes with his adenoids removed. We can tell he can hear better and he is more stable. They also took a blood sample for allergies while he was under. We go back for follow up mid-June.

Thanks for checking in on Jackson. We didn't want to post until we knew for sure and had all the answers. We just ask for prayers for Jackson and that the increase in Depakote takes care of these seizures!!!

Outdoor Fun

Jackson is enjoying playing with all his new birthday toys. I finally cleaned out his toy boxes and removed the ones that needed to go. On Sunday, he had a blast outdoors getting messy! First, I let him finger paint in his diaper. I laid a sheet on the lawn and he went to town. His body was more painted than the paper, but he did some creative art.

Then he got to wash off as he played with his water/sand table. He loves this thing! He gets wet from head to toe. Definitely a water boy! Jackson is beginning aquatic therapy, a 10 week program next month. He actually took some swimming lessons last summer. This one is more structured where they do evaluations. I will be excited to see how he does.

However, first, we have to get his ears fixed. We went to the ENT on Wednesday of last week. They did a hearing test and then we met with the doctor. Jackson is hearing at a 40 -50% loss because of the fluid behind his ear drums. So, this means he will have tubes put in on Thursday, May 14th. They will give him general anesthesia, then the doctor will poke a needle in the ear drum, drain the fluid and put the tubes in. 5 minute procedure. I feel bad that he has not been able to hear clearly all this time. His left ear is worse than the right. We are hoping that once this procedure is done, then it will help his speech, hearing and equilibrium.

Then the following week, Monday, May 18th we leave for Detroit for our follow up. We will be there through Wednesday, the 20th. Jackson will have an MRI on Tuesday at 1 pm and an EEG at some point. He will have to be sedated for the MRI too. I did check with his Neuro to make sure these two procedures (MRI and tubes) could be done so close, and he said it was okay. Then on Wednesday we will see Dr. Chugani. We are looking forward to going. Mostly, we pray for good test results for Jackson and that everything looks good and is organizing like it should! I think everyone will be pleased by how far Jackson has come in the past 7 months since surgery!

Jackson is starting to become the little explorer now. Since he has been crawling, he would pretty much just go short distances or stay in whatever little area I would have him in. Now, he is taking off from room to room and down the hallway. The first time I saw him take off, I was in the family room on the phone and I see him crawl past the couch. Then he turned the corner to go down the hallway. I was so excited...I kept peaking at him around the corner to see where he was going. I did not want him to see me or he would have turned back. I don't know where he was going, but as soon as he make it to the opening of our guest room, he saw his beloved exersaucer (that he no longer fits in) and took off to get to it. He raced over and pulled up to stand and started playing with it from the outside. It was too cute! Since then, he has gone to different areas of the home and we are loving this new development with him!

We are so thankful to God for the healing in Jackson's life and all the continued prayers for our son!

Birthday Boy

Jackson turned 2!!!! We had a little birthday for him Thursday evening at home just Tony and I. Then today, we had a Handy Manny birthday with family and friends. Jackson really likes watching this cartoon on Disney. We had a great crowd despite the horrible storms moving through all day. It was going to be indoor/outdoor party, but with the flooding rains it was all inside. The kids ended up hitting the pinata in our garage and all turned out well! We really had a good time!!!! We thank everyone for coming and making Jackson's 2nd birthday so very special!

Unfortunately, Jack was not feeling so well at the party. He has been fighting bad ear infections. In fact, we have to go to a ENT specialist to likely get tubes placed in his ears. The pediatrician thinks it is important to get his ears corrected, in case it is affecting his speech and hearing. The appointment is next week. He seems to be feeling better tonight after dinner. Thank goodness! I was worried the past couple of days. He was not his usual happy self.

We wish our little man a very Happy Birthday! We are so proud of you....