11 Months...

11 months without seizures. It was our longest streak since he began having them regularly 3 years ago. On Friday we had a date night set and were going to go to a 4th of July picnic about an hour away. Pa Pa, Jan and Steff were going to come watch the kids but Jason had been golfing all day and I was tired and we canceled our plans and just stayed home. I am sure everything happens for a reason even if we don't know why at the time! Jack had a very minor seizure on Friday night. I am sure everyone would have been fine even if we had gone away! It was a simple partial seizure -- which is how they usually start for Jack, but they progress to complex partial and on occasion to generalized. This one stopped in its tracks after about 1 and a half minutes and he's been fine ever since. No Diastat needed. He had started (as usual) with teeth grinding and chewing motions and his little lips had a slight tinge of blue, and he was spaced out for the duration. He came too and asked to eat...he seemed confused a little and then went to bed for the night. Like I said, he's been okay ever since...and fingers crossed we go another long stretch before we see another.

Jack had Botox injections yesterday under general anesthesia. He did awesome and was such a champ during the process. He remained calm and only got nervous when the anesthesiologist came at him with the gas mask...and he was out like a light! He woke up and asked for fries...too bad it was 9:00 am and no one had any on the way home! He's doing great today and will start intesive outpaitent Physical Therapy next week.

I will keep you posted! Thanks for reading!

Quarantined...

We've been "quarantined" by the Department of Heath!  Jack was pretty sick last week (high fever, lethargy, coughing, aching, sleeping, etc.) and home for the almost the entire week.  He began to feel better and went back to school on Monday only to end up with another fever and cough on Tuesday night.  Apparently 5 out of 8 kids in Jack's classroom were out this week all with flu-like symptoms.  This type of large absenteeism needs to be reported to the dept. of health.  So two rounds of blood work, a chest x-ray and a nasal swab later Jack is "fine" his nasal swab for the flu came back negative.  However (and I am unsure of the entire process/story) due to the fact that the other swabs of the other classmates may or may not have come back positive for the flu ALL of the samples are being sent to the CDC for further analyzing -- especially for Swine Flu!  So Jack is not allowed to return to school until further notice!  We are not worried about Jack having Swine Flu but part of me is a little freaked out!  He's still sick but better than yesterday and his fever's down with medicine and is in no way getting worse.  We just have to wait and see when they will allow him to go back to school.  It could be a day, a week, or a month!  I surely hope it's only a day ot two.  Anyone else with experience please weigh in here!

Morgan had been sick too but is totally better.  I hope both kids get well and stay well for a long, long time!

I will keep you posted!

EDITED TO ADD:  Blood work shows an high white count so we're starting a round of antibioitcs...more bloodwork next week...sheesh.

EDITED AGAIN: Fever is back up to 103 :(  He's hanging out on the sofa watching tv...

Update on Jack Post-Botox

Jack had botox about two months ago.  I just wanted to give you a quick update on Jack post-botox. He's doing GREAT stuff with his walker! His motor planning is really shining through now that some of the spasticity is relieved. He takes his walker up and down 6 inch curbs, up and down ramps and can turn in any direction he pleases.We have him long sitting as much as possible. The school has really, really stepped up and they have him in a stander every day, they have him long sitting in a floor chair with his legs straight out gently strapped for an extra stretch. His PT is pleased and Jack loves walking outside with his walker. 

He is so motivated to walk.  I can't wait to get some video to share with everyone!  I love that it's the perfect time of year to have the maximum affect of the botox in his system.  I only hate that it's temporary :(  But for now, Jack is able to rip up the sidewalks and run around till he's out of breath.  That makes it all worth it.

Video to come soon!

Neurology Appointment

Earlier this week we took Jack to his neurologist for a 4 month follow up.  Over the past few months Jack's been weaned from 3 seizure meds to just ONE.  Greatly improved his overall mood, behavior, eating, growing, learning, and no seizures to speak of!!  He's now taking Keppra twice a day with no nasty side effects and no seizures.  Let's hope it stays this way for a long, long time!

Jack was such a big kid at the appointment.  He cooperated and interacted with the nurses and dr.  He did great during the wait (not his strongest point).  Morgan on the other hand was quite miserable and I made a mental note, come Hell or high water she's not going along to future appointments if I can help it.  She was very concerned there were going to be needles involved.  Not for Jack, but for her!  She kept trying to espcape and kicked my shins so hard -- and my arms ached the next day from trying to hold her on my lap all the while trying to listen and talk to the neurologist.  

Between Morgan's yelps and cries I was able to explain Jack's up and down behaviors to the neuro.  Most often it's related to his bowel habits and being backed up.  There are other times though when his behaviors and obsessions seem to come out of left field and we're left scratching our heads.  What the neuro suggested is weaning Jack off of Risperdal (the medication he's on for behavior issues).  We really haven't seen a difference relating to the medication.  It's a pretty "serious" med and I can't say one way or the other if his good days/weeks are because of the med.  So, we will see in a few weeks what he's like off of the medication.  Weaning can cause withdrawal and worsening behaviors so we are going very slowly.  

The neurologist only wants to see us back in 6 months!  That's a milestone in itself!  Keep us in your thoughts and prayers for a seizure free, smooth behavior-filled summer.

PS - see the BIG KIDDOS in the picture?  Jack's in a big people chair and Morgan's in Jack's chair.  They thought it was great to have lunch and be such big kids :)  Morgan also likes to play peek a boo as you take her picture.  So if you see her covering her eyes in recent pictures that's what she's doing!

Eyes :)

We had our 6 month follow up and have great news!  Jack is finally using both eyes together and they are as straight as they've ever been.   It means his brain has made the connections in order to use both eyes together.  He's never been able to do this 100% of the time.  Yay, surgery, glasses and patching success story :)

No glasses this time around and he only wants to see us back in September.  It was so strange to hear him say "have a nice Summer" it's hardly Spring yet!!

So great news and one thing to check off the list for half a year :)

Home :)

Botox went well!  Jack was out like a light from the gas -- the injections took about 20 mintues and he woke up shortly afterwards.  We were released about 30 minutes after he woke up and he's eating everything in sight right now!  Yogurt, cheerios, water, chocolate milk and fruit snacks...lol

We were given an rx for extra therapy PT and OT 3 hours a week as well as a night time wedge/knee splint/brace thingy that I am sure isn't going to go over very well with Jack...but we shall try.

The Dr. said even under anesthesia his hammies (hamstrings) were so so tight.  She didn't say this outright -- but I think surgery is in our future.  Sadly this is what happens with spasticity.  Jack's had a major growth spurt and his muscles just can't handle the growth.  I hope botox and therapy help a little for the next few months!

Gotta run -- Jack wants to go watch Tee Tee (TV).

Update!

Jack is scheduled for Botox tomorrow morning!  He'll go under general anesthesia and recieve injections in both legs and his right arm/hand.  We go in at 8:00 am and will be able to come home later that day.

Yesterday we attended a 2 hour meeting at our adoption agency! We learned the general process of adopting internationally. We asked a lot of questions and felt very relieved and excited after the meeting. We have filled out the formal application and sent it this morning. The application was done online so we should hear within 48 hours on whether or not we were accepted into the program.   Please say a little prayer :)  At this point I am not posting too many specifics regarding the agency publically online.  I am not sure of the legality and would rather discuss these things privately!  So please, feel free to email me with any questions!  Also, stay tuned to our Adoption Timeline on the side bar for updates!!

Also on the side bar you'll see our 2009 March for Babies banner!  Click on the banner for our 2009 March for Babies information and of course to donate in Jack and Morgan's honor ; )

I will let you know how Jack is doing after botox tomorrow!

6 Appointments in 3 days...

This week has been a marathon of illness and appointments!  I hope our recent rounds of prescriptions kick this bug OUT OF OUR HOUSE!!!  All 4 of us have been diagnosed with an upper respiratory infection and all 4 of us are now on antibiotics.  Fevers, coughing, sneezing, vomiting, clogged sinuses, headaches abound!  Jack was first, then Jason, then me, and now Morgan.  Fingers crossed we are all well soon.

Jack also had his orthopedic surgery appointment yesterday and all looks GREAT!  He had a hip x-ray and his hips look "perfect" according to the dr.  We only need to see him again in a year -- YAY!  Jack is scheduled to see the physiatrist at the end of the month for another botox evaluation.

School is going well.  Only two days left next week then it's Christmas break!  I haven't had a chance to rest and we're all not feeling well so I must get better soon so I can get wrapping and gifting!

Will update really soon!!

Catching up is hard to do!

Oh, I don't know how to say sorry to everyone!  I've been reading my blogs each and every morning...but just haven't had the, I am not even sure what, to post.

Jack's behavior has been really terrible for the past week.  I now know why.  He woke up early this morning and didn't seem to be feeling well.  I decided to keep him home -- and I am glad I did.

I decided to call the pediatrician because we noticed Jack's pee smelled really, really bad and perhaps he has an infection... 

He was really down and out and slept most of the morning.  He woke up and ate, and then at 11 am he had a small seizure lasting about 45 seconds.

Then he was really pale and sickly looking.  They got us in and out at the dr's office and confirmed (via straight cath) he does have an infection.  They are starting him on antibiotics and will call us when the culture comes back for the lab.  I know some of you remember the ordeal back in 2007 when he went round and round with a nasty kidney infection and ended up hospitalized to finally get rid of it!  I really, really hope this is done after one round of meds!

I hope you're all doing well!  I do have so much else to write about -- especially school!  Jack is doing amazingly well and I couldn't be happier with his placement.  (((hugs)) to you all!

Neurosurgery Check Up

Jack had his yearly check up with his neurosurgeon yesterday.  I braved it on my own with both kids...I packed a bag full of snacks, toys, drinks, and diapers and we left around 9:00 am.  

Jack was instantly in a bad mood when we got to the waiting room.  Morgan ran around and made lots of friends while I tried to chase her and keep Jack calm.  It just wasn't happening.  He nearly busted out of his wheelchair a few times -- when he's mad he's soooo strong!  Luckily our wait wasn't too insanely long!

It's always nice to see this doctor -- he's the only dr. left on Jack's team that has been with us since Jack's birth.  I explained the situation and how Jack has really emotional days filled with crying, head banging, and screaming but then can go several days and have none of those things happen.  It concerned him enough to think it could be shunt related to send us for a CT scan that same day.

We got the orders and went downstairs to the imaging center...and waited...and waited...and WAITED.  It was horrible.  I thought of calling Jason and begging him to come over and help....but I didn't want to do that to him and of course the minute he'd get there would be the minute they'd call us back.  There was something with a form or paperwork -- they were working on getting it straightened out.  I though about leaving but knew we couldn't.  An angel of a woman (I didn't even learn her name) befriended Morgan and played with her so I could try to calm Jack.  It wasn't happening.  I thought so many times "I can't do this!!" but of course there's no choice!  Since the room was closing in on us, I took the kids out to the hall way.  Morgan had a blast running up and down the hall and Jack was playing some kind of game with the vending machine!  It's something I really don't want to repeat for a very, very long time.

Several hours later it was Jack's turn.  I could not go in with him because they do not allow children in the CT scanning area.  The brave boy did so well.  I am so proud of him!  He held still and listened as the machine did its scanning.  It took just a few minutes and we were finally SPRUNG!

Both kids fell asleep on the ride home and I was just trying to shake the stress.  I stopped once because I though Jack was starting some seizure activity -- but he was only sleeping.  We got home around 4:00 pm and the Jack napped while Morgan played and watched the Backyardigans.  It's no wonder she wanted to relax -- I think she ran several miles yesterday!  lol!

So I called this morning for the results of the CT scan and the dr. said his ventricles look great and even a little smaller than the last scan.  So it's good news!  He said if we can't figure out what's going on with Jack we should call him and he'll get us in for another scan during one of the episodes...he really doesn't think it's shunt related though.

Jack was excited to go to school this morning and we had to rush, rush, rush because we overslept!  We managed to catch the bus just in time!

So Morgan and I are taking it easy today and tackling the mounds and mounds and MOUNDS of dirty laundry.  How do 4 people dirty THAT many clothes???  I will never know...

EEG

Jack was so brave and did so well at the EEG this time around. I can't explain how proud I am. He was scared, anxious, and just wanted to go home but he really did well with all of the gluing, taping, strange sounds and lights...I just want to give him the world when I watch him go through this kind of stuff. Not that the test was painful or anything like that -- just imagine though you don't know what's going on and someone does this to you:

(this is OBVIOUSLY not Jack, lol but an image from google image search)

Plus add in all of his meltdown triggers (someone messing with his scalp, being still, being told we can't go home yet) and not a single tear, not a single scream...

We of course don't have the results and probably won't until we see the neuro in October. It's okay though because we do have a plan in place.

Will keep you posted!

Update on Neurology Appointment

We're home now. Jack was so out of it at the appointment -- I am sure he's still post-ictal from last night's seizure.

The doctor is going to change his medications and he ordered an EEG as well. We're doing it in stages -- first wean tegretol at the same time we're going to be starting Keppra...we'll then wait until that process is done (4 weeks), see the neuro again, then start to wean the valproic acid. We also need labs as well. My head is spinning...i left with so many orders and prescriptions...and all I want to do is cuddle with my boy.

Jack has been drooling excessively and we noticed patches of hair missing from the back of his head -- all are signs of too much valproic acid. So basically we need to find a medicine that works.

Jack was so tired and pale I decided not to go to the ortho appointment. The same ladies who checked us in for the neuro also do the check in and scheduling for the ortho and once they saw him they agreed he looked like he needed to go home!

I hate all of this and I hate how utterly drained we all are after these things. We're going to be hanging out in "he could have a seizure at any moment-land" for a while until the meds are worked out. Even then Keppra may or may not work. Let's pray it does!

Anyway, thank you for your thoughts. I will keep you updated!

Wheelchair Woes...

THUMP.

THUMP.....

THUMP!

That was me banging my head against the table. Seriously, I am so FRUSTRATED.

It turns out that insurance will not cover the e-fix add on for Jack's chair. The sticker price? Over $8000.00 -- that is MORE than what a new wheelchair, even a power chair would cost. Since insurance will only cover a new wheelchair every 5 or so years....we're basically stuck with a wheelchair that Jack cannot use.

So back to the drawing board and back to square one. I am trying to look into customizing a manual one arm drive for the chair (Kuschall does not have one commercially available). I don't know how far I will get with this idea.

I had Jack at the eye doctor this morning and he wheeled the best he could (in large circles, and backing up) all the way into the toy room! Imagine what he could do with the proper wheels. I HATE this...wheelchairs are supposed to provide independence -- and here's a little boy who wants nothing more than to be independent but has everything stacked against him. His little legs don't work how he wants them to...his one arm doesn't work at all...and now we're limiting him further by making him use a chair that's impossible to use! Can you feel my mommy heart breaking?

So what to do...what to do...I would like to fix his current chair if we can. It's perfect in how it fits him...it's light weight, and stylish....we may end up getting a new chair all together, but do we go for another manual chair? A power chair? How on earth do people pay for this stuff? If we get a power chair will I be able to lift it in and out of our car?

I think, like I said first I want to try to fix what he has....then if we can't, I will start over again.

THUMP.

THUMP.....

THUMP!

Getting it out...a new diagnosis, full disclosure

I wrote the following to my specialparent.org friends on December 10th, 2007 upon returning from the neuropsychological evaluation at the hospital. I have learned more since then and even have different thoughts/feeings now but I wanted to let you know how I was feeling in the moment.

_________________

December 10th, 2007

We just returned from the neuro-psych eval and I am a little overwhelmed.

Jack didn't cooperate for much of the testing but did well with certain activities. The primary way of getting information was through parental interview. The Dr. was fabulous. I immediately knew she was listening and completely and totally validated my concerns and LISTENED. We were with her for about two hours and then we took a break while she calculated the test results. She did the WPPSI - 3 and the EIDP language tests. She also went through a lot of "check lists" about behavior (not cognitive based)...

Her findings were PDD-NOS -- on the autism spectrum. When we went through the checklist item by item after she mentioned PDD it clicked. It's like the list should have been called "Jack's List" instead of the Checklist for Autism in Young Children.

I can't possibly type the whole list, but I will briefly type which ones Jack displays...

Problems with Social Interaction:
Socially indiscriminate behavior (touching people, looking for tattoos on everyone -- even if he doesn't know them well, playing with classmates belts, hair and getting right up into strangers' faces).

Perservation:
Narrow or unusual range of interests and play behaviors, obsessive preoccupations, attachment to and holding particular objects (he always has a brush in his hand, could play endlessly with the string to our vertical blinds), among other things.

Stereotyped and repetitive play (opening and closing, etc) -- he opens and closes things over and over, has a lot of other things he could do over and over again.

Upset with change/transitions (absolutely)

Somatosensory Disturbance:
Unresponsive at times to verbal input (just stares off, not seizure related, even when I KNOW he KNOWS what I said.)

Hypersensitivity to some sounds (vacuum, lawnmower, etc.)

Distress with crowds and commotion (tunes out and doesn't look/act like himself)

Fascination with visual stimuli (he likes fans, lights, etc.)

High tolerance for pain (probably a preemie thing) but he can fall and not shed a tear.

Sleep disturbance (finally better, but only recently)

Feeding disorder (again, cp/preemie thing)

Atypical Developmental Pattern:
Expressive language disorder -- limited speech, limited reciprocal conversational speech (he expresses his needs but doesn't hold a conversation, he is unable to answer yes or no questions, only uses no as a refusal.)

Atypical vocalizations (screeches with delight, etc.)

Splinter skills -- (he's advanced with his rote memory, very mechanically inclined but delayed severely in other areas.)


Mood Disturbance:
Tantrums, aggression, self-injurious behavior, upset by performance demands (no explaining needed)

Mood changes suddenly

Difficulty expressing emotions

Problems with Attention and Safety:
Selective attention, situational over-activity (hyper-focused on things interesting to him -- totally tunes out and is inattentive other times)

Limited safety awareness

Like I said, this is just a small description of the items checked off -- but enough to know it truly affects all areas of development.

She explained how she has a niece very similar to Jack (2 lbs at birth, bilateral brain bleeds, cp, triplegia, delayed developmentally) and how even though they are very similar in their cognitive and physical skill set, she does not have the behavior symptoms Jack has. I was very confused at first how these symptoms were different than neurological damage or developmental delays. When she explained how you can be delayed and still not have the behavioral issues Jack is having.

We talked about Jack's developmental delays and she gave me Jack's IQ score. He falls in the Mild Mental Retardation category with an IQ of 60. She said in the early years of school he should do well because of his rote memory skills -- but in later grades when teaching and learning relies more on conceptual information he may have trouble. I am not surprised, but I never really ever wanted anyone to tell me this. He has strengths and I know that -- he has areas in which he is very delayed and I know that as well. This is the ugliest and hardest label to come to terms with. I don't know why, it just is.

She is going to help us set up ABA therapy for (hopefully) 20 hours a week at school and the remainder at home. I know very little about this, but from what she told me it sounds like a really, really good situation for Jack.

I am sure I am leaving out a ton of information but I had to get some of this out before I forgot. I am not posting on Jack's blog or really saying anything to family until I can digest this information myself. I told Jason but we didn't get to talk long because he had to work today. I didn't say anything to my mom (she was watching Morgan) -- I just told her we did a lot of tests and we'd have the report in a few days. I know it will be hard on our parents to hear this information. Hell, it's hard on me and I can't be strong for anyone else right now.

Thanks for reading -- if I didn't have you guys I would seriously not know what to do. You've been here through everything -- the NICU, the CP diagnosis, the emergencies, but also the best times -- Jack's first word, his first steps with his walker...I am the mommy I am today because of my friends here. I will never, ever forget that.

Thanks again for everything...love you guys!

_________________

So why now? I feel like if I don't share this part of our world I am not being honest. I also feel ready to answer questions and talk about it -- more so than around the holidays. I am also going through a tough time setting up wraparound services (TSS support, ABA therapy, etc.) and getting everything I feel he will need in order to present at his IEP meeting next week. There are decisions about elementary school that are so BIG I am not even sure how to wrap my mind around it...

There are tough decisions to make and I need YOU as my ever trustworthy sounding board! So there...that's the past few months in just one post.

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!!

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!!

Botox Today!

We are getting Botox for Jack this afternoon -- we used to travel to CHOP but we've started seeing the pediatric physiatrist at the Med Center and decided to have it done there.

Jack will not be sedated for the procedure. I am nervous. At CHOP they used numbing cream and sedation -- here they only use the EMLA numbing cream. I don't like sedation, but I also know they sedate for a reason (pain and memory). I even had a dream about Jack's old neurologist lecturing me and damning me for not listening to him. UGH. Although last time Jack was sedated for Botox he had that horrible apnea episode that dropped his sats waaaay down and he turned gray/blue and aspirated which several weeks later caused pneumonia and a seizure that lasted for hours/911/ER stay....so I am all for trying it without sedation at this point. Double UGH.

Then of course afterwards he has an eye appointment. This is going to be one long day!

Please wish Jack luck!

It's been a rough few weeks...

This is some of what's been going on -- I wrote to a few of my mommy friends for support and rather than re-write it all again, I thought I would share those posts with you.

Nov 28th

We had our follow up appointment with our neurologist this afternoon. It was our last visit -- he's retiring and I am really sad to see him go. He's helped us so much through this past year with all of the seizures Jack's had. We will see a new doctor at the same office.

Jack has been seizure free since we started him on valproic acid along with tegretol (what he had been taking). His mood was great for a few weeks then the past 2-3 weeks have been really, really difficult. His obsessions have spiraled out of control (all doors must be closed, all lights on, the fan in my bedroom even though the door is closed must be on, his shoes have to be away if we're not going anywhere, if one sleeve is up the other one must be too and so on, so on). Jack has always had "quirks" but they didn't interfere with daily life. It seems like he suddenly has tunnel vision and has a complete meltdown if I tell him no, or wait, or if he knows the shower door is open...add a severe language delay into the mix and it's been, to say the least, a very trying time over here. He gets mad and hits himself, and even started pushing chairs over at the kitchen table if I tell him he can't have another (fill in food item here).

Normally he's so sweet and I have no idea what's CAUSING the behavior...I hate treating something that I don't know the root cause of, you know??

I even took him to the ped to make sure it wasn't his ears, neurosurgery doesn't think it's his shunt, and I am kind of at my wit's end.

Our neuro plan is to increase the vaproic acid slightly over the next two weeks to see if that helps his mood (it's an anti seizure med but is also a mood stabilizer). We have plenty of room to go up with the valproic acid and over the next year he feels we should be able to wean the tegretol out totally and rely on the valproic acid alone for seizure control.

If the valproic acid works in the mood department then we're good to go. If it doesn't he have us an RX for resperdal. Candi, I know you guys use this with Noah. Please, tell me EVERYTHING you know about it.

I am hoping for some normalcy for Jack soon. He's not his happy self. I hate to see him so wired and moody.

Thanks for listening...I'll update on how the increase is going...

Edited to add luckily we do see a neuro-psych Dec. 10th so I hope to get some insight on his OCD-like behaviors and what we can do to help talk him out of the rages and meltdowns.

sigh...

Nov 30th

Due to Jack's recent changes in behavior -- I really wanted him to have a CT scan/neurosurgery visit to rule out anything with his shunt. We are scheduled for a scan in the morning on wed. and an appointment with neurosurgery immediately following. If things get worse until then we were told to head into the ER.

I almost can't take it anymore. This morning he was in a heap on the hardwood floor banging his head over and over. He's been impossible. I hate seeing him this way.

I called his neuro too this morning to see if we can start the rispridal immediately vs. waiting to see how the increase in seizure meds helps as a mood stabilizer.

I don't know if I will have any hair left -- it's been that bad. I am going to call a few pharmacies to find someone who carries the and as soon as I get the okay from neuro I am taking both kids out to the pharmacy.

Thanks so much for listening.

Dec 6th

Wow, yesterday was a tough one! Jack did so well during the CT scan. Normally we have him sedated -- but they didn't have enough time on the schedule to do it under sedation so I said we could try without. He cried a little, but stayed very still. I sang to him (and everyone else in the room, lol) and he did calm down.

We had a lot of time to kill after the scan until we saw the neurosurgeon so we walked around the hospital halls and stopped at Starbucks for a latte and an applejuice (latte for me, juice for Jack, hee hee).

We signed in at the neurosurgeon's office and waited, and waited, and WAITED...Jack was having a full blown meltdown and I wanted to cry too. We were finally seen and the scan revealed a minute change in the size of Jack's ventricles. They were not convinced the outrageous behavior had anything to do with his shunt -- but were more convinced it was his seizure meds. They did a conference call with Jack's neurologist and he stated he didn't want any of the meds changed (I totally agree -- we finally have total seizure control). So we left without any real answers and we'll go for another CT scan in a few weeks to keep an eye on those ventricles.

The respridal has helped A LOT -- he hasn't had any excess sleepiness or anything else undesireable from the new med. It's taken away the 24 hour meltdowns and now when he gets upset it's definitely more in the typical or normal (for Jack) range. It's a temporary measure until we can sucessfully wean him from Tegretol and slowly ramp up his Valproic Acid...and see how his behavior is at that time.

Thanks for all of your thoughts and prayers -- they really, really mean so much!!

His neurologist's last day is next week. He called to check up on us last night and we went over our plan one more time. I thanked him for his help -- and he said to call early next week to let him know how we're doing before he has his last day. Like I said before, I will REALLY miss that man.

Busy, Busy Week!

This has been one BUSY week! Morgan had her 6 month check up -- she's doing well! Meeting all of her milestones and is 50% across the board for growth! She weighs 16.5 lbs and is 26 inches long. She had immunizations and a flu shot. Jack also had a booster shot and a flu shot -- the chorus of cries were heard throughout the office! Due to a pharmacy issue we trialed her off of her Prilosec (reflux med) and decided to wait a few days to see if it returned. So far she's reflux free and it's been over a week! WOO HOO! I ended up taking both kids on my own. The pediatrician's office is small and I had an okay time of it.

Later, that same day, we had to go to the Med Center for Jack's physiatrist appointment. I had Morgan in her front carrier, Jack in his wheel chair, the backpack on my back and the walker on my arm. We got lots of stares -- I must have looked like a one-mom traveling circus! People jumped to open doors and a nice lady took the walker and carried it to the office!

The appointment went well. Jack was evaluated for botox and she feels he really needs it in both legs and right arm. We talked about what Jack can do gross motor wise and we also got a referral to the hand clinic for a day time splint for his right hand. She also gave us an Rx for Baclofen in it's pill form (right now we have it compounded into a liquid). I am a little skeptical about Jack taking the pill -- for those who have Baclofen in pill form, what do you do to get your kids to take it? Jack's scheduled for the Botox injections on December 17th. Not too far away at all! I was expecting a much longer wait.

We talked about Jack's wheelchair and she said she'd help us in any way to try and get what's called a one arm drive system for the chair. Jack is really not able to use his right hand at all to push the right wheel. A one arm drive is an attachment that will propel the chair when it's pushed on the left side only and keep it straight so he can push with his left arm to get around. It's probably going to take forEVER since the vendor is really, really bad about returning my calls and following up. Guess I'll go bug him again this afternoon. UGH.

Jack's been going weekly to LV College to participate in their physical therapy program. He is working with the PT students who are in their 6th year of school and getting ready to graduate. He loves going because there are other kids from his school there as well! It's a volunteer program at no cost to us. It's supervised by their instructor a Dr. of Physical Therapy -- who also works part time at Jack's school. Morgan even volunteered one week so the students could assess an infant. They used the AIM gross motor scale for which she scored right at 6 months of age.

Jack is a little under the weather today, so we aren't going to go to therapy. He had a low grade fever and is coughing. I hope whatever this is passes quickly.

I feel like I am forgetting things I wanted to write about! Oh well, that's the cool thing about blogging -- I can just start another post later ; )

Oh, one cute tidbit...the set of language builder cards contains 350 cards...every once in a while I go through them and pull out several cards to add to Jack's ever growing stack of ones he knows. This week I added a picture of corn on the cob. I knew he knew what it was, and when I asked him he said "Old Corn" I have no idea...I told him it was "corn" he smiled and said "old corn" huh??? it makes me giggle every time.