Much better...

I took Jack to the pediatrician yesterday and it turns out he has pneumonia. Yesterday he spent most of the day on the sofa sleeping and resting...not eating or drinking much at all. I know the diastat was partially to blame, but I knew he was feeling lousy from the fever and cough too.

This morning Jack woke up and asked to eat right away. He requested waffles (plain, never butter, never syrup) and ate THREE of them! He had water to drink and is playing now which is so nice to see.

He's on an antibiotic for pneumonia and motrin for the fever. I canceled school and therapy for the rest of the week and the only other obligation I have is a quick informational meeting this afternoon about transitioning to Kindergarten.

I will keep you posted on how he's doing! Thank you all so very much for your comments. I am only sorry to know that there are others going through the seizure stuff as well. I am glad to know I have so many caring friends and family. Thank you from the bottom of my heart. (((hugs)))

Seizure and 911...

Jack had a slight fever yesterday so I kept him home from school. He spent the day on the couch soaking in cartoons and not really eating or drinking much at all. I knew he was coming down with something but overall just seemed tired. He perked up when daddy came home and got off the sofa for the first time in several hours and played with Morgan while Jason and I watched the news. Jack stood up at the table in our living room with Morgan under his feet and suddenly tensed up and flew backwards a lot like a solid brick of ice -- and landed on the back of his head on the hardwood floor. For a brief second I thought he had just lost his balance, until I realized he was still rigid and turning grey. I pulled him away from the table by his foot and Jason grabbed the diastat and called 911. He wasn't breathing because he was locked in a tonic phase and really turning grey/blue. I administered 5 mg of diastat and his body released from the clenched, rigid tone to loose and floppy and he began breathing very shallow breaths. The paramedics, fire department and police got here within moments and he was coming out of the seizure but was still unresponsive. They took his stats and medical info and loaded him onto a board with a neck brace and secured him so he couldn't move as a precaution for the nasty fall he had. Jason stayed with Morgan and I rode in the ambulance. During the ride to the medical center Jack was coming to and was agitated because he was strapped down. Once we got to the hospital he was responsive and asking for a drink. Jason had called my family to come watch Morgan and he arrived at the hospital shortly after we did. The ER was quiet so we got attention pretty quickly. They took blood to test for medication levels and started an iv for fluids. They took him for a head and neck CT scan and we waited for the results. His blood levels came back low and his CT scan came back clear. We were released after several hours of observation with instructions to increase his valproic acid and follow up by phone with peds and neurology today. Jack went to bed shortly after we came home. Morgan, on the other hand, was thrilled to be spending time with Grandma, daddy and mommy and wondered why we don’t have late night “parties” like this more often. So far this morning Jack is tired and coughing and again, slightly feverish. I will be setting up an appointment with his pediatrician in the next day to make sure he’s getting better and not in need of antibiotics.

There was no warning with this seizure…no twitches, no vomiting or lip smacking…nothing. It came on so quickly and suddenly. I keep replaying the scene over and over and can’t get the sound of his precious little head hitting the floor out of my mind. I have made the executive decision to get carpeting in our living room and hallway. In fact, while I’m making executive decisions, any way we can simply carpet and pad the rest of the world too?

I will keep you all posted. Keep our little man in your thoughts and prayers and send plenty of “NO MORE SEIZURES” vibes our way.

I've Been a Bad Blogger!

And for that I apologize! I am not even sure where to begin!

I have been taking Jack to outpatient therapy (PT and OT) several times a week in the mornings before school. He is working so hard without a fuss and it makes me so proud. The Botox injections really worked well for Jack this time around. He is able to be stretched more easily and it's carrying over into walking, standing and even sitting better. Every chance I get I've been taking Jack with me on errands/appointments and using his walker. It's not always easy -- but the boy is so motivated! We get lots of onlookers stopping in their tracks and most people are supportive and patient even giving Jack a few words of encouragement along the way. He's come so far with listening to my directions and not wandering off on his own or trying to crash into store displays (YIKES)...usually I go a bit in front of him and let him explore but try to keep him reigned in and on task. I am so proud -- my heart swells each time I see the look on his face as he's walking! I can't wait for warm weather so we can REALLY get out and explore the world!!

Miss Morgan is crawling -- quite fast, and with the intent on touching and eating everything she's not supposed to! It's amazing to see her grow and develop into this little person. She's babbling a lot as well -- she babbles dada, nanana, and lots of coos and goos, giggles and squeals! She and Jack are funny together. She is interested in EVERYTHING he's doing. She eyes up his food, the way he crawls, she dances when he dances to music, laughs when he laughs and wants every toy he's playing with. Jack goes with the flow and is a very nice, loving big brother. He is so gentle with his sissy and loves to touch her soft hair and give her hugs and kisses! See the video for a great example of the fun at our house lately!

We are preparing for Jack's annual IEP -- which is always nerve-wracking and stressful. This year we have a lot of meetings and preparations because we are going through the process of transitioning him from a special education preschool setting to KINDERGARTEN!!!!!!!!!!!!!!! Can you believe he's going to be 5 in a few weeks?!?!?! FIVE. I am without the words to express how that makes me feel! We will be attending meetings to figure out what kind of program would best suit Jack's needs. I know we have several options. I will let you know as we learn more.

New pics are in the January 2008 album and here is a video of the kids I took last night...enjoy and have a great weekend!!!

Go, Go, Go Morgan!

Morgan wanted her own post about being on the GO! She's getting ready, don't you think?

How Jack is Moving Post Botox...

Besides the fact that he's cute ; ) -- I wanted to show the video of Jack post botox at one week. He's having an easier time getting to standing. His left foot seems to be turning in a lot more than usual. Perhaps releasing some of the high tone is causing this. I don't know but will be mentioning it to the physiatrist in two weeks. His right arm is totally straight -- which is nice.

This morning we went for a walk with his walker outside (we're having a "heat wave" in January!!) and he did well -- he had enough high tone left to hold on with his right hand (previously after botox his right hand became too weak to hold his walker) and he walked well with the nagging exception of the left foot turning in.

Here he is moving and crawling inside this morning:

Botox Follow Up Today

The follow up went well this morning. She didn't feel the need to serial cast Jack!! She said he's close to neutral in his feet and we still have lots of time for the botox to work as well. Of course his hamstrings are always a concern but I really don't think any amount of botox or casting would be a "cure" or "answer" anyway. I feel sometime in the future surgery will be mentioned.

We notice a nice improvement in his range of motion and his legs are hardly crossing at all when he's walking with his walker. His hand is nice and open too and he's wearing his hand splint with no problem (fingers crossed it stays this way).

I know the results are temporary, but our hope is to increase his range of motion even slightly to help prevent bone and muscle growth problems called contractures. He has several contractures already and what they call a fixed contracture in his right hand. He's so young and has so much growing to do -- I worry what all of the spasticity will do to his body. I also wonder when is enough enough as far as intervention. So far we've done the "minimally invasive" things -- but okay, it may be medically minimally invasive but what about all of the appointments and hours of therapy...I just hope we choose the right course for Jack.

So overall our botox experience with the med center's new physiatrist went very well, with only minor bumps along the way...

The doctor is also excited to learn more about the e-fix power conversion for Jack's chair. She's on board with letting writing and insurance battling to get Jack what he needs for independent wheeling! The NEW vendor (don't even get me started on the OLD vendor) called and is getting preauthorization. We will meet with him to discuss the system in detail soon.

I am still adjusting to Jason being back at work! These two really give me a run for my money!! Busy is always an understatement at our house! More to come :)

The E-Fix Power Conversion

My frustrations have grown greatly over the fact that Jack is not able to use his wheelchair independently -- the sole purpose for having wheels is FREEDOM! I have had it up to my eyeballs with our current vendor. I've been trying to get a system that will propel Jack's chair when he pushes only on the right side. Come to find out it doesn't exist for his brand of chair. I was discouraged and started looking online. Months of waiting and calling totally WAISTED!! I found something called the E-FIX (on the site click on E-FIX) and let me say I WANT THIS FOR JACK so very much!!!! Check it out!! It easily converts your existing manual wheelchair into a powerchair!



1. A simple bracket connected to the power distribution unit is installed on the wheelchair frame.

2. The manual wheels are removed and the E.fix wheels are "plugged in". (Existing manual wheels may be interchangeable with the E.fix drive wheels.)

With a turn of the wheel hub, users can choose between manual and power operation.



3. The joystick controller is mounted to the wheelchair frame.This component is quick release for easy removal.



4. The nylon battery pack is attached using Velcro straps. The power distribution unit plugs into the face of the battery pack as it sits in the pouch. To fold the wheelchair, only the battery pack needs to be removed.

Here's a google image of the system attached to a manual chair...



There are so many reasons why this seems like it's ideal for us. It's utilizing his existing chair -- we love his chair and the portability factor (we don't need a lift) -- he fits well in the seat and you can switch between power and manual modes.

I contacted a new vendor and he's going to work with us to try and get this system for Jack!

Here is the printable brochure (PDF)...

I am hopeful that this will truly let Jack be independent!!

Mornings Like This...

And sometimes I wonder how I don't get anything done?!?

Update!

Wow, I can't believe it's 2008! HAPPY NEW YEAR! Our Christmas was fantastic -- and I've uploaded a lot of new pictures to the December 2007 Album!

Jack had botox injections on December 31st and the procedure went very well. He was so brave! He cooperated and was excited to wear the jammies (hospital gown) and get into bed. He was put under general anesthesia and was given injections in his both legs in the hamstrings, gastrocks, upper arm, forearm, and thumb on the right side. Right before they gave him the mask to go to sleep he asked me to sing "The Wheels on the Bus" and the Dr. and anesthesiologist chimed in too! I learned both have kids under two years old -- so they were pros at all the verses! He woke up and started bouncing around -- and after he took some juice and rested a while we were free to go home. We will be heading to PT and OT several times a week for the next few weeks to maximize the benefit of looser muscles and help Jack gain strength that will hopefully carry over after the botox wears off.

Jason had off from work from December 21st until Jan 2nd! It was so nice to have daddy home for so many days in a row! We had so much fun on "vacation" and I was sad when he had to go back to work! We enjoyed the downtime and played with the kids, went shopping, and basically just stuck around the house and took it easy. We did go to Chocolate World in Hershey and the kids had a great time! They were fanstastic and gave us the "Royal Treatment" when it came to disabled access. We didn't have to wait in line and they had a special wheelchair ramp to get on to the tour ride!

I really hope your holidays were happy and safe! I promise not to be such a stranger to the blogging world now that things have settled down! To my blogging buddies -- I've been reading and catching up...now I'll just have to come out of "lurking" and tell you all how much I've missed you!!