Neurosurgery Check Up

We had a check up with Jack's neurosurgeon yesterday. He's been Jack's NS since he was born. Jack has hydrocephalus which required a vp shunt to be placed when he was in the NICU. Thankfully Jack hasn't had any problems with his shunt and we're on a yearly check-up schedule with the NS.

Jason came home early from work to be with Morgan so I could take Jack to the appointment. We left early and I decided to take his walker. We parked in the parking garage and I carried Jack and the walker the short distance to the garage elevators. Once we got to the elevators I put Jack in his walker and he was so excited! He walked into the elevator...stood there while we went down and I helped him turn around so we could walk out. He walked all the way down the ramp to the sliding doors at the South Rehab entrance. He wasn't paying attention and he got his walker caught on the sliding door. A nice gentleman held the doors from closing and Jack maneuvered and made his way through the doors. He then walked down the corridor and made a right hand turn into the waiting area! I was so proud of Jack.

We signed in and as we were waiting for the doctor he took several trips down the long hallways...a few times he asserted his Independence and wanted to go in a different direction. For the first time he was on his own. It was amazing to see. I liked that he didn't listen and insisted on going back to the bathroom instead of back to our exam room! Normally Jack doesn't have a say. He's usually in his wheelchair or stroller -- both of which I control. He did take instructions well and I was able to verbally instruct him on which way to turn or how to get "unstuck" -- it was truly a milestone day!

We met with the NS and he was happy to hear that Jack hasn't had any signs of a shunt problem. We talked about his candidacy for surgery to reduce spasticity. We talked about SDR surgery -- he didn't think Jack was a good candidate due to low muscle tone in his hips as well as dynamic tone (tone that changes with positioning). We also talked about a baclofen pump -- which he does feel Jack would be a good candidate. There is a test they do to see how the medication would affect Jack. If we decide this is what we want to do we can schedule the test. He told us it will look as though Jack swallowed a hockey puck -- Jack is small and has skinny little belly and the pump which is placed in the abdomen will protrude out. The numbers he gave us for the pump system that they use were refilling usually happens every 3 to 6 months in the clinic. It is done by a needle into the pump. The entire system usually needs replaced about every 7 years because the battery dies. I asked if placing the pump puts Jack at risk for a shunt infection. He said he's only had one patient with a shunt end up with a baclofen pump site infection after surgery and the shunt did NOT get infected. He said patients with shunts usually end up needing less medication from the pump because the shunt helps move it along the CSF tract. I thought that was an interesting tid-bit. There are risks -- infection after surgery, pump failure, over or under medicating (both of which can be extremely serious). The pump is programmed by a human being so there's risk of human error. The benefits are many though. The pump puts medication directly in the spine which goes directly to the spastic muscles. He said he feeds the lining high which would greatly reduce the spasticity in Jack's right arm...enough to be functional with a lot of therapy. Jack's legs would benefit making walking easier. It's a tough call. He gave us some information and a video to watch. Silly us, we don't have a VCR anymore -- just a DVD player so I am going to have to find somewhere to watch the tape!

We are taking our time making the decision. There is no rush. I would love to hear from anyone who has been though the surgery themselves or have kids with the pump. I will keep you all posted on what we decide.

Today is Jack's first day back at school for over a week! I will miss him :( I am sure he'll be so excited when the bus gets here!!

Vacation Pictures!

Our vacation pictures are uploaded and ready to view!

September 2007

It's amazing when you visit the same place each year to see the difference in Jack's growth and development. He had an absolutely wonderful time! We all did. Although traveling with two little ones is tough -- it was certainly worth the experience. Vacations take on a new meaning -- we didn't relax one bit, it was tough work, and hard -- but the look on Jack's face when he saw the ocean was totally priceless! Morgan did amazingly well during the car ride...something I was a little concerned about. She loved going for long walks and spending time with Grandma Josie and Grand-Pauly.

Neuro Update

I spoke to Jack's neurologist yesterday afternoon. He agrees that the episodes were seizures. He said they were simple partial seizures.

Our plan is to increase his night time dose of Tegretol by 2ml. He's increasing the dose at night because of our experience with complete meltdowns when he has more medication during the day. So now he's getting 4 ml in the morning, 3 ml in the afternoon, and 8 ml at night. In a few weeks we'll have another blood level done and hopefully this will work. If not he said it's time to look into switching to a different medication.

We had a lovely vacation -- I will be adding pictures as soon as I find the bag that has my camera!!

Small Seizures?

Jack's last seizure requiring intervention was June 3, 2007. He had been having one about once per month since January 2007. We then switched his medicine schedule from 2 times a day to 3 times a day and it worked very well.

Over the last 6 weeks or so I've noticed what I think is a small seizure about 4 times. He'll start with what looks like he's tasting something --which is usually what he does when he's about to vomit and then have a seizure. His heart races slightly, his mouth moves like he's tasting something and he looks a little scared. He then smiles like nothing is wrong and moves about his business. These episodes only last seconds and don't progress any further. Afterwards he's a little clammy and pale.

We're still on vacation and he did this right before breakfast this morning. This does sound like seizures, doesn't it? We just had blood work done last week so when we return I will call his neuro and run it by him as well as check his levels.

The kids are having a wonderful time on vacation! If you want to know where we are think "Watch the Tram car please!", aggressive seagulls that steal whole pieces of pizza and chicken legs off of hot grills, Khor Bros. Ice Cream, Mack's Pizza...lol, it's the Jersey Shore!!!!

The sun rising yesterday morning -- beautiful!!

Where are we?

I'll give you a hint...



More to come!

Random things...

Morgan had her 4 month check up last week. I ended up taking Jack along to the appointment because he was due for a booster shot. The stars were aligned and everything went smoothly! I took Jack's wheelchair and carried Morgan in her carseat. The only trouble I had was getting them both through the door but another mom and her son came to our rescue! We didn't wait long at all and both kids did amazingly well with the shots. Morgan's 13.5 lbs and following the growth chart nicely at around 50% -- not adjusted for prematurity. The pediatrician said she would call and find out whether Morgan qualified for RSV shots. We weren't holding our breath because the cut off is usually 34 weeks and she was born at 34 weeks and 1 day. A few days later I got a call and SHE'S APPROVED!!!!!!!!!!!!!!!! No fight, no calls to make, she's going to get them!! I was totally not expecting her to! This is a relief because I am sure Jack will be bringing home lots of bugs from school this winter.

Recently I've realized that Jack does so much better with the Reverse Kaye walker vs. his Crocodile Walker. I had a pit in my stomach thinking we made a mistake getting the Crocodile and that we are basically stuck with it and insurance would not pay for another walker. On a whim I decided to check ebay. Again, someone was looking out for us! There was one in brand new condition Reverse Kaye walker for sale (buy it now) for $60. I purchased it immediately!!!!!!!! They retail for several hundred dollars. When the woman selling the walker emailed me about shipping, we started a conversation about walkers. Her son is now 6 and a half and just "graduated" to using the CROCODILE WALKER! She said her son did better with the Kaye walker at first too. It came by the end of the week and I could not be happier. I'll have to get some video of Jack strolling along our sidewalk out front -- he does amazingly well. His new DAFO's should be in any day now and not a moment too soon. His current pair are just too small. I am not sure if I am going to even wear them on him today when he goes to school.

A cute Jack story! Jack was playing in the living room and I grabbed my keys to go get something out of my car. I passed by him and he said "Bye bye" and I said, "Mommy's not leaving -- I'll be right back" which he replied "Go bye bye?" and I smiled and said "No, mommy is just going to the car honey, I'll be right back!!" I ran to the car and when I came back in Jack had both shoes lined up perfectly on the mat at the door! He really wanted to go somewhere and I obviously didn't get the hint the first time...LOL!

Well, I have to run! Morgan just woke up....told you this was very random! LOL!

Crying Times...

Sometimes we're happy other times we're...well...not happy.

The BIG Three-Zero...

August Pics

Click the album link below...

*~*~August 2007~*~*

The Heart of Blogging

Sometimes through my day I think about a virtual conversation I've read. I wanted to share some of those with all of you...

Heesun at Special Survivors writes about Be"longing" So many times I feel alone in my thoughts and to have someone across the country or world take the words right out of my head is amazing.

Dream Mom writes about the Gray...areas in a special child's development that are neither black or white or clear cut. She was able to describe a feeling I had no words for.

Lisa's thoughts mirror my own...here in her Dear Friends post.

Mel tells us More About Crew. Her mommy love shines through in her writing and makes me well up each time I read it.

Jacqui says what's Wheelie on my mind about being Wheelie Obvious.

There are so many more posts I would love to share -- but I won't overwhelm you and I'll save them for another day. To the authors -- thank you for opening your heart and sharing your life with me.

Help With Comments...

Can someone help?

I switched to haloscan comments and all of my previous comments were gone...I wasn't aware this would happen. Is there a setting to get them to appear? For now I switched back to blogger comments because I don't want to lose those precious conversations!!

New DAFO'S

Jack was casted today for new DAFO braces. He grows so quickly!! This will be his FOURTH pair already! I decided to try and brave an outing on my own with both kids to somewhere other than my mom's house. I chickened out at the last minute and called a friend to see if she could tag along and play the role of extra hands, baby wrangler, and preschool song singer! She happily obliged thank GOODNESS!

Morgan was less than happy to be out in pouring rain and in the car...Jack started to get nervous when we got to the parking garage at the hospital. Both kids were crying by the time we made it to the orthotics area. I am so glad my friend came along -- and I learned I probably could not do a medical appointment with both children. Jack needs me to hold him because he can't walk or climb by himself -- the examiners need me to hold him and I of course want to hold and comfort him. Morgan is not happy being still. She needs to be moving at all times unelss she's sleeping which she prefers to do only in her bed. Long story short it will be a LONG time until I brave a medical appointment with both of them ; )

Jack is trying a new product from Cascade DAFO -- it's called the softy brace. It's functionality is exactly the same as his current brace. The difference is on the inside.

Cascade DAFO 2 Softy

The indside is soft and good for those prone to sores, hard to correct, or boney feet. I wouldn't say Jack is truly in any one of those categories but after talking with the orthotist today I came to the conclusion to try them especially because the functionality of the brace is exactly the same so why not add more comfort?

Jack starts school tomorrow. I am sad. I always get sad when he has to go back! The bus will be here at noon and he'll get home around 3:45. That's longer than usual -- the driver must have some other stops after Jack! This is his last first day of preschool!! :( You know what that means? He'll go to Kindergarten in just one short year!!! Oh where has the time gone?

Monday Memories...

March 2003

Just born

March 2004

1 year old

March 2005

2 years old

March 2006

3 years old

March 2007

4 years old

Quick Update!

Morgan is doing better than Jack -- she still has some coughing and a runny nose but no fever and is generally happy and eating.

This morning Jack had an appointment with his orthopedic surgeon and he was very miserable. He's had a low grade fever, lots of coughing and sneezing. He's resting now and if he's still feverish tomorrow I'll take him to be seen by the ped.

The ortho said his hips look stable and he only wants to see him back in a year!

Thanks for thinking of us!! Jack thought it was very funny to be in Morgan's crib!

Sickies...

Bad news -- both Morgan and Jack have a cold. Jason had been sick for several days with a cold and we were trying to be as careful as possible not to expose Morgan. Yesterday afternoon she started with a runny nose, sneezing and coughing. She does not have a fever -- please keep your fingers crossed that this passes quickly with no intervention needed.

As some of you know we kept Jack basically quarantined under doctor's orders due to RSV, etc. He only got his first cold at 18 months old and his first antibiotic at 24 months old. This is scary and new for her to be THIS YOUNG and sick.

The doctor's office said to run a cool mist humidifier, use saline drops/nasal suction about 15 minutes before each feeding and to call right away if she runs a fever or has labored breathing.

She's acting more tired -- but is eating well. Even though she wasn't as early as Jack -- she is a preemie and I know how awful illness can be for any baby, especially preemies.

Jack started last night with a runny nose and today has been coughing, sneezing and generally miserable. Both kiddos are sleeping right now -- hopefully getting rest so they can get better!

Thankfully Jack did not have a seizure with this illness. Usually he has a seizure before we even know he's sick. I am keeping an eye out of course -- but I think we're going to skip the seizure this time.

I'll let you know how they're doing...

Disability Awareness Clip

I saw this video on another blog this afternoon. I loved it, absolutely loved it. How do you feel about the video?

Milestone Alert!!!

JACK PEED ON THE POTTY!!!!!!!!!!

So we're very proud at the moment!!!! We're taking potty training very, very slow. He started to hide while pooping and when he's done he'll tell me. He knows what his penis is (pee pee) and he knows that's where pee comes from. He seemed a little shy when I made a big deal over peeing in the potty so the next time I just said "hey great job -- wanna flush?" and he did. He loves flushing -- but if he doesn't pee, he doesn't get to flush. We're at the basic stages here and any advice would be appreciated.

We're using a very basic potty ring with a splash guard right now. I think I may look into something more sturdy further down the road.

Pharmacy Concerns

Please read the email we sent to our pharmacy last night...

Picked up oral Baclofen for my 4 year old son tonight. When inspecting it a home, I noticed that there were large vi sable chunks of undissolved "material". I called the store to report this issue and they instructed me to bring the medication back and that they would mix up a another dosage. I returned to the store and was given another bottle, however there were still chunks of undissolved material. Pharmacist told me that the new generic pill form since store switched from Old Pharmacy to New Pharmacy does not "mix as well." I asked what would happen if one of the chunks ended up in my son's dosage and if it could be an overdose, and her reply was that it could. I asked if it was ok to give the dosage to my son if I was sure that none of the chunks was in the dosage, and her reply was yes, but I detected uncertainty. She then proceeded to tell me that the chunks were "probably" the filler used to make the pills. She could not provide any other direction and apologized to me. I am concerned and upset a couple of things here, but mostly that the pharmacist could not provide any more instruction and more importantly was willing to give me the medication knowing that there was potential risk for my son. Unfortunately we do not have any remaining baclofen - which is our fault - but, we have never had any issues getting this medication quickly and properly up until now. We are forced to skip this dosage and scramble to find another pharmacy in the morning that can mix baclofen compound completely. I have images of the chunks in the bottle should you be interested.




This morning I am taking both kiddos to another pharmacy hoping they can remake the Baclofen. This is unacceptable! We often hear horror stories of pharmacy errors and it's one of those things that's always in the back of my mind. With compounds it could be so easy to make a mistake...which could be very serious if not fatal. We have worked with our current pharmacy for 4 years and as much as I really like the pharmacists I will be taking our prescriptions elsewhere from now on.

So please, always inspect your medication. If something looks off call right away, don't assume things have changed or they switched brands, etc. If it's not the same look, color, smell, or taste call and ask why! It's better to be safe in this kind of situation.

I'll let you know how we make out -- the place opens at 9 am and I plan on being there then!

Those Magic Moments...

Morgan's check up went well! She's just over 12 lbs and in the 50th percentile for weight -- and that's not adjusting her age. She's catching up very well. We were given the okay to switch her to regular baby formula. I chose Nestle Good Start Supreme -- after reading about their proteins being broken down more than other formulas. It's much less expensive than Nutramigen -- although of course if she'll get whatever she needs if she can't tolerate anything else!

We had one great night this week where she slept through the night at the right time! WOO HOO -- progress. Last night was a very difficult night though. She was up all night...unhappy and finally at 3:30 am went to sleep. She ate quite a bit -- nearly every two hours, but I am not sure if she was eating because she was hungry or because it was comforting her.

Jack is doing quite well. His behavior's been pretty top notch and he's been trying a lot of new foods and requesting them too!! He also had his first shower in the bathtub! He LOVED it!

He's growing up so much. He's using so many new words -- and if he doesn't have a word for something he uses that great imagination of his and chooses something from what he can say...for example he loves it when I trim his nails...he lays back and hands over his digits one by one. Last time I told him he had a hang-nail and that's why it hurt a little. So several days later he kept saying "Hanger, I wan hanger." So I assumed he meant a clothes hanger...we went into the closet and when I presented a hanger he started crying. I picked him up and asked him to show me what he meant and he directed me towards the bathroom cabinet....he opened the drawer picked up the nail clippers and said "HANGER!!" I had to scratch my head until I remembered our conversation about the hang-nail. I love to see his mind and memory at work. Now that he's using more words I see he knows and remembers so much...so, so, so much more than we ever guessed. So while the rest of the world needs some interpretation I LOVE our conversations. I wish each and every one of you could experience it for yourself! Although sometimes it can be frustrating trying to decipher what he's talking about the magic that happens when we're both on the same page is truly amazing! And that magic happens more and more every day!

PS -- CHEL...I was hoping to be invited to read your blog :) angwilhelm@gmail.com

Morgan -- A Night Owl...

It's okay, because she's cute -- but we are seriously lacking sleep at our house! Morgan has really ended up getting her days and nights confused. I have tried many different things to try and remedy this -- but it seems that she's sticking to her guns on this one. She has this super fussy time between 10:00 pm and 12:00 am and then she eats and will usually go to sleep sometime between 2:00 am and 3:00 am. She will sleep 5-6 hours, wake to eat and take a few naps during the day. Last night was actually the best night we've had in a long time. We avoided the fussy time by the skin of our teeth by entertaining her and trying to tire her out. I don't know if this is the "right" approach, but sanity comes first. She went to sleep around 1:30 am without having to cry for 2 hours before hand! I realize all of this is normal infant development at this age. Jack used to fuss every night from 7 pm to 9 pm for a few weeks...then he'd sleep "through the night" from about 11 pm to 6 am...so our time is coming -- I just hope sooner than later.

Morgan's reflux is well controlled now -- YAY! She's taking Prilosec and 2 tsp of rice cereal in her bottles. She's still on Nutramigen formula (the pricey stuff) but since it's working so well I am reluctant to make any changes at this point in time.



She's a happy baby (this picture is for Steph -- Miss Morgan in Tony's high chair!!) She loves to play on the floor...she even loves tummy time! She's growing and changing every day right before our eyes. She has her 4 month check up soon -- and I am sure Dr. C. will be pleased!

I have so many other things to blog about...but it always sounds better in my head, and when I get to the computer it just doesn't come out! I think of things before sleeping most nights and by the time I remember any of it, my thoughts are random and disconnected! So I will continue to read the blogs of my dear friends and stare in awe over their ability to write so well!