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.

The Wheels on the Bus...

The People go Up and Down...

The Doors go Open and Shut...

The Horn goes BEEP, BEEP, BEEP...

All through the town...

YAY!

Trick or Treat!

Language Builder

A few months ago I purchased a set of Language Builder Picture Cards that Jack's speech therapist introduced last year. I love the detail of the pictures and Jack can interpret the information much better than a "cartoonish" picture or black and white stick/symbol type of drawing.

He impressed me the moment we opened the package! He knew so many different pictures and this was without practice or prompting (our set is different than the ST's). He loves to go through the set and has come up with some cute words for things as well. For instance, there's several similar pictures of the same thing -- but they may be a different color, in a different setting, etc to help with generalization skills. We came across a picture of a grey, fluffy, long-haired cat and he immediately said "HAIR!!!!!" to this day he still calls that cat hair...all I do is say yes, that's a cat, and he has LOTS of HAIR!

Jack wasn't totally enthusiastic about reading the cards in front of the camera, but I think the video is a good example of what he's learning. The sound/picture gets a little funky in the middle where Jack's mouth isn't moving with the sound! I don't know why that happened...anyway, enjoy our sweet little student studying his cards!

PS -- if you have any questions about the cards please feel free to ask here or email me at angwilhelm@gmail.com

The set was expensive, but very worth it!

Yesterday's Neurology Appointment

I love our neurologist. I am so sad to report that he's LEAVING. We will have one more visit with him before he goes.

Jack had a seizure free weekend and had one 15 - 30 second episode at school Monday. So far so good yesterday and today. He said Jack's doing well and adjusting to the meds and we're not at full dose yet. He said the small seizures are par for the course and to call him if things change.

I reported a major increase in appetite (not bad news by any means) and only having meltdowns when it's close to bed time. No major side effects for which I am grateful.

We saw him at the CP clinic and he said Jack has a contracture in his right hand and both legs. The leg contractures are not "fixed" and he recommended we have Botox and extra PT following. A few months back he referred us to the new physiatrist -- our appointment is Nov. 5th. She will manage Jack's spasticity (as well as our current ortho) and the new neuro will manage his seizures/meds.

He tried his best to get a multi-approach cp clinic started -- and due to red tape and MONEY it fell flat on it's behind. It's a big step in the right direction to get a physiatrist on staff and I am glad we have one locally so we won't need to travel two hours to CHOP. He said I should be adamant (aside from doing physical harm ) about using sedation for botox. He said due to money issues they just want to stick the kids with all these injections and not involve anesthesia. Sort of get 'em in and get 'em out -- who cares what the kiddo remembers or feels as long as it saves MONEY. Those are MY words, not his!! He said it makes him sick and he's going to go be a lawn doctor instead of a people dr. lol.

I thanked him PROFUSELY for his candor and help and wished him well. He said if he goes in to private practice he wouldn't see the need for us to travel "that far" he mentioned a place which isn't that far and I told him I'd follow him...lol, I swear I am not stalking him -- but a good neuro is so hard to come by and I told him that.

I am glad we see him again before he leaves so I can ask him if he's retiring or setting up shop somewhere else. Fingers crossed we can manage to keep him as our neuro!

The team watched Jack walk with his walker and said he really depends a lot on his spasticity. He has weak hips and this coupled with tightness is making him crouch and scissor slightly. They noted a huge improvement since our last visit on his motor planning and problem solving skills. I also told them how he's pulling to stand using finger-width ledges on windows, and door knobs.

Overall it was a fantastic appointment for information. After we see the physical medicine dr. we'll possibly do a targeted round of botox (meaning one location for one specific purpose) and it'll be in his right hand/arm. We'll see "what's left" tone-wise after the spasticity is reduced and go see a hand therapist for a proper hand splint.

As always, I'll keep ya posted. Thanks for reading!

Colin Farrell Talks About Son’s Cerebral Palsy

I had no idea -- it's not like I go around hoping celebrities have disabled kids, but it sort of makes it seem like it can happen to anyone. Thanks to Jacqui for bringing this to my attention!

QUOTED FROM US MAGAZINE

Miami Vice actor Colin Farrell may have earned a reputation as a bad boy in Hollywood, but at home with his four-year-old son James, he is anything but. In a recent interview, Farrell spoke about his son's disability, a rare form of cerebral palsy called Angelman's Syndrome which affects his speech and motor skills, and how James has shown "amazing courage" even as a toddler.

Farrell, who has joint custody of his son with mom Kim Bordenave, recounts a recent milestone in James' life: his first steps. “He took his first steps about six weeks ago and it was four years in the making. All the work is his, he worked his arse off for four years. And when he took the first steps it was incredibly emotional, there wasn't a dry eye in the house.”

And the 31-year-old actor is committed to helping his son have even more such moments, by reaching his "individual potential." He says, "With my son the only time I'm reminded that there is something different about him – that he has some deviation of what is perceived to be normal – is when I see him with other four-year-olds. Then I go 'oh yeah' and it comes back to me. But from day one I felt that he's the way he's meant to be.”

Fortuitously, Farrell became involved in the Special Olympics prior to James' birth. “It's mad the way the world works. It's bizarre. I experienced the overwhelming effect of being around those athletes pretty much just before my son was born with special needs." For Farrell, both experiences have been enriching. "[I am] incredibly blessed to have him in my life," he says of James.

Morgan's Turn

Thought this was cute...

My Life, My Love, My Family

Make an on-line slide show at www.OneTrueMedia.com

Puddin' Pie

So far, so good...

Jack's had a quiet weekend so far. He had one seizure on Friday evening and ZERO on Saturday and so far so good today. I am hoping the new med is finally working. Jack's neurologist called to check on him Saturday morning -- it was very nice of him! We see him on Tuesday of this week.

Morgan is getting big! She's sooo cute and full of energy! We've been having some problems getting her on a "normal" schedule (meaning SLEEP, SLEEP, SLEEP at night). She's very much a late night baby. We've tried everything and hope this phase ends SOON!

Morgan and Jack are adorable together. Morgan won't let Jack out of her sight and he is a willing participant in making her giggle. He'll hop like a bunny for her and she SQUEALS with delight. Last night he helped me give her a bath by scrubbing her toes and splashing water on her legs. He also loves to help with putting on lotion (sho-shin) and he'll smell her belly and say "yum" and top if off with a kiss. It melts my heart to see my little man so gentle and attentive to his baby sister. I sometimes have to remind him to be gentle because his hugs are very much in the category of bear hugs...lol.

Jack's continuing to amaze me with his walker! He's also pulling to stand using the wall and door knobs...I find him standing so many different places. His confidence is building -- and sometimes getting him into trouble!

We've been "practicing" with utensils for what seems like FOREVER! He got the fork down pat a while ago, but not the spoon. The scooping motion is hard for him and took a long time to learn. Last night I gave him a bowl of pudding and he managed to finish most of it with the spoon (without getting it all over). I was pleasantly surprised and really took stock of the moment. Sometimes things come when we aren't expecting them to.

Jack's also using two and three words together without prompting. Actually just now he said "fish on" which means he wants the fish tank lights turned on. The other day he said "Walker, side, shoe" which roughly translates into "Mom, lets get our shoes on and take my walker outside!" again, I am happy with how much he's learning, growing and changing. He's learning and retaining new words every day.

I will surely keep you posted on how we're doing this week!

Riding it out...

I spoke to Jack's neurologist this morning...I was so fuzzy headed, Morgan was up until 3:00 am -- (teething woes) and Dr. N. woke me from a dead sleep. What I got from the conversation is that he wasn't happy about yesterday's 4 seizures and we are increasing the rate of increase of the valproic acid after he did some weight calculations (mg per kilo).

He's on call all weekend and we see him on Tuesday. He also said to give Jack his meds as soon as he wakes up in the morning instead of waiting until 9 am -- because his night time dose isn't carrying over 12 hours.

I did ask him if this was "normal" for the situation (as in the bumpy road reference) and he said yes. We are hanging in there, and hopefully the increased rate will help get us seizure free faster!!

Even more...

Jack had a total of 4 seizures today. He's doing okay, but my nerves are shot. Will post an update in the morning....

More Seizures...

Yesterday morning Jack and I were lying in my bed and he had a seizure lasting several minutes. I ran to get the diastat and opened the back door because our dog was barking madly to go out and pee. I ran back to Jack and watched him and he seemed to be coming out of it so I did not give him the diastat. He was out of it for a little while and then was totally fine.

I know we are to expect this to happen until the meds are up to therapeutic levels -- but I still don't like it. It truly is like constantly waiting for the other shoe to drop. I can handle it, but the stress is getting to me. Every time I hear a bump or noise coming from the other room I run in expecting to find Jack having a seizure.

I realized that I had the dog outside and hadn't attached her tie! When I went to let her in she was gone. I called and called. Jack was still post-ictal and Morgan was napping and I didn't feel comfortable putting them in the car to scout the neighborhood...so I went out every now and then to call for her. Finally one time when I was out I saw her head pop up over the neighbor's bushes! She came running back all happy and excited. Poor dog had to take herself for a walk...lol. I am glad she came home!

Later in the morning Jack had a massive poopy that was gross and sticky and went up his back and down his legs...I ended up throwing away his jammies and he had a nice long bath. It was just one of those days.

He went to school and had a great day. This was his first day back since the end of September -- they have weeks off here and there because they are on the extended school year schedule. I wrote a note to the teacher explaining what to look for and I also told Jack's nurse to keep an extra eye on him.

Then, this morning he had another seizure at the breakfast table. I moved him to the sofa and carried the diastat along with us. It was shorter than yesterday's seizure and he's lounging and watching the Backyardigans "The Yeti" episode.

I hope once the new meds reach their therapeutic levels that we can say GOODBYE to seizures.

The Heart of Blogging...

I recently posted several links to posts that I defined as "The Heart of Blogging." I read another post tonight by Billie (Holland and Eden's mommy) that I really want to share with all of you. As I was reading I kept nodding in agreement. She truly took thoughts I've had swimming and swirling in my mind for years! Billie, I appreciate you so very much!

Perspective -- written by Billie 10/4/07

QUOTE:

Perspective

It could be worse. This is a topic that has come up on my blog, as well as in various other forums that I am a part of, several times in the past three years. How does a micropreemie mom react when their acquaintances or even friends are complaining about their full term healthy kids? They're not walking at 14 months. They're not talking in sentences at 2. They're picky eaters. They won't sleep through the night. Moms of twins complain about how much work their two normally developing kids are. Pregnant moms complain about how uncomfortable they are at 36 weeks, and they wish this baby would "just come already."

How should moms of kids with more severe disabilities react when they are barraged with the worries of other preemie moms worrying that their baby might have CP, when they are already holding their head up at 6 months? Or stressing out to the point of their hair falling out over a language delay at 15 months?

It's all a matter of perspective. I admit to having lost the ability to relate and be empathetic in certain situations, and I am sure that I have snapped, or said something that I probably shouldn't have more than once. More than once I have been guilty of at least thinking "stop whining," or "get over it," or "what in the world do you have to complain about," or "FOR THE LOVE OF ALL THINGS HOLY, COUNT YOUR BLESSINGS AND STOP WASTING SO MUCH ENERGY ON SOMETHING SO INSIGNIFICANT!!!" Most of the time I am able to bite my tongue and remind myself that their feelings are valid for their life and their situation. And they are. It's NORMAL for people to worry about their kids, even the little things. Had I not been thrown into the life that I have now, I would most certainly been one of those moms. I can be forgiving.

At the same time, I feel that people in general should be considerate of their audience. I have an analogy that I think most women can relate to... You see, almost every woman has some complaint about their body. They think they are too fat, their nose is too big, their belly pooches out too much, their boobs are too small, their hips are too round, etc. etc. etc. The list goes on and on. But it would be rude and inconsiderate for a woman of average or below weight to show up at a support group for obesity, and complain about being fat. It may be very real and true to her. She may be miserable and unhappy about her weight or her body and it may affect her life to a great extent. But it is still rude and inconsiderate of the audience. How should the women in the group react? Should they try to be empathetic and supportive of the skinny woman's feelings? Or should they put her in her place, and give her some perspective?

I wouldn't join a support group for moms of kids with CP, then moan about my child not walking until they are 18 months old. They have children who will never walk. I wouldn't talk to a mom who lost a twin about how hard it is having two. She would do anything to be in my shoes. I wouldn't complain to a preemie mom about how miserable my third trimester has been, and how uncomfortable it is to be 8 months pregnant. Really, it will just make her want to stab you in the eye!

Blogs are an interesting thing. When you are writing on a blog, you don't have the ability to really know and choose your audience. I think, on your blog, you can moan and groan about anything you want. That's what it is for. Your audience chooses you, and most of the time they do so because you write about something they can relate to, at least on some level.

I moan about things on my blog that I just wouldn't in other places. I don't complain about Holland being hospitalized with every little cold to someone who's child has cancer. I try not to complain too much about the severity of Eden's CP with someone whose child has severe quadriplegia, or impaired cognitive ability, or is nonverbal. I wouldn't complain about Holland having to wear her patch, or glasses, with someone whose child is blind. And I try not to complain too much about what terrible eaters my kids are directly to someone whose child does not eat by mouth at all.

At the same time, I don't want to lose perspective to the point that my friends can't talk to me just like they would any other friend. There will just have to be some give and take, by myself and by the people I encounter who know my story. I will try to remember that your feelings and worries about your healthy full-term kids are valid and very real to you. But you should also be considerate of your audience and not go on and on about how your kid who is in the 95th percentile for weight is a picky eater! At least use a disclaimer, such as "I can't imagine what you are feeling, because I feel so incredibly worried about my 35 weeker spending 5 days in the NICU."

It could always be worse. I need to remember that too. I am so blessed in so many ways. Eden is learning to talk. She has good use of her hands. She seems to be pretty bright in terms of cognitive ability. Holland is falling less, and is starting to run a little more smoothly. She can do a somersault. They are both improving in their eating. They both interact so well, and are interested in so much, and are cheerful and friendly and very happy most of the time! I am so very lucky. But you know what, even if they could do none of these things, I would still be lucky. Someone else will always have it worse, and even they might still be lucky in so many other ways. It could always be worse. But maybe it could be better too. Our feelings are all valid and need to be shared. Let's all keep it in perspective.

Seizure in the car this morning

Okay, I am officially sick of seizures...for ALL OF OUR KIDDOS. Morgan had her first RSV shot this morning and on the way to the ped's office Jack started having a seizure. I almost pulled over to give him diastat but we were almost at the ped's office...I pulled in the parking lot like a hot rod driver, parked crookedly and ran to Jack. He was coming out of it when I got him out of the car seat. We went in (I carried both kids) and I told the nurse Jack just had a seizure. She took us to a room right away and by then Jack was fine, just a little shaky.

Morgan had her shot and we're home now. Jack asked for a hotdog for lunch and seems slightly off, but I have seen this post-ictal state before. I cut his lunch into tiny-smaller-than-toddler bite sizes just in case.

I called the neuro and am waiting on a call back. <-- Wow, that was quick, just answered the phone and he said we'll continue on our current med schedule. I knew this would be the answer, but just wanted to report the seizure. The new med has not had time to kick in yet.

I don't like the uncertainty. I don't like being alone when it happens. I certainly don't like driving when it happens. I don't like not knowing what to do in the moment...call 911? Give diastat? Wait and see? I hate not knowing if it's the start of something bigger or if it'll just fizzle and stay a small seizure. As usual, I will keep you posted.

I am off to make a large pot of coffee and snuggle with my darling kids. My sweet babies who should never know any pain or sickness...I need a tissue now too.

Costume Ideas??

Morgan's costume was easy to choose and I can't WAIT to see it on her! You'll have to wait and see...too, wink, wink!

I've always had an easy time choosing Jack's halloween costume each year...let's take a trip down the costume memory lane...

2003 "Baby Elmo"

2004 "Tiger Jack"

2005 "Jack the Puppy"

2006 "Beetle Bug Jack"

2007 -- ?????

I have no idea what to dress him up as!! And no, I am NOT crafty, not in the least. I could probably cut two holes in a bedsheet and send him as a ghost but that's the oldest trick in the book, right? Hmmm...he loves the Backyardigans, especially Pablo, but the only costume I saw was waaaaay too expensive!!

Ideas, please?!?

Urgent Neurology Appointment Today

I wrote this yesterday:

I am concerned about Jack. As I posted earlier he had a seizure on Saturday. He ended up sleeping for a couple of hours afterwards. He was okay mood wise (we even went for a long walk) but then he went haywire. His mood was all over the place...he cried and raged...I forget when he went to bed but it was close to normal time. Sunday was a lot of the same -- moody, cranky, raging...then he fell asleep at 6pm and only woke up for meds a drink and a diaper and slept all night till 7am. I called his neuro to update on the seizure. He said he really thinks it is time to switch to a new med due to the fact that we increased the Tegretol 10 days ago. He said the mood is most likely from the meds (we've seen this before). He is fitting us in tomorrow at 9am. I have to take Jack for bloodwork in the morning at 6:30 so he can have the levels by the end of the day.I don't like seeing him so upset -- it's like he's possessed. It breaks my heart because I know he isn't doing it on purpose. It has been a "walk on eggshells, waiting for the other shoe to drop" kind of day.I will update when we get home tomorrow afternoon.

**UPDATE**

We discussed Jack at length and decided the best course of action is to reduce the Tegretol slightly and add Valproic Acid (Depokene). He said by using both meds we have more wiggle room and he won't be maxed out on Tegretol and still have seizures like he is now. Instead if the Tegretol covers most of the seizures, the valproic acid will hopefully cover the rest with room to increase the dose. Please keep your fingers crossed that the road to being seizure free and side effect free is a smooth one. Although I know there is the possibility for bumps along the transition...

Small Seizure

When we were on vacation Jack had a small seizure after breakfast one morning. When we got home I called his neuro and he increased his bed time dose of tegretol and said if that didn't work we'd switch to another med.

Well, this morning right after breakfast (10:00 am) he had another small seizure. He started with mouth movements like he was tasting something, grunted like his tummy hurt, asked for a drink and then some food (which I did not give him). I think he was feeling different sensations in his belly. It lasted only seconds and now he's really sleepy laying on the couch.

Another call in to his neuro I guess...

What meds are your kiddos on for seizures? I don't know what he would consider changing to...I wonder why the Tegretol isn't working like it used to? He's been taking it since he was 15 months old with fabulous control until January of this year.

Anyway, just asking for some hugs -- I HATE this.

No Words Needed...