Happy Halloween!!

Create Your Own!

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Oh wow, we're back after a lot of technical difficulty! I switched to the blogger/google/beta and was quite lost for a bit. I believe everything should look and run smoothly now.

I have so much to tell you! Pictures will have to wait because I am on daddy's work laptop at the moment (shhhh!!) because our mac is having power issues (it won't turn on) and we have yet to get it looked at.

Anyway, things have been very busy of course -- Jack's been well, no seizures, and up until recently very healthy! He has a cold now but should hopefully be at the tail end of it. He's at school today and he was acting fine, no fever just some left over sniffles...

We went to visit Kris, Mike and their daughter Alicia in the Poconos two weeks ago while daddy was in LA on business. Alicia has cerebral palsy too. Kris and I have been friends for almost 4 years now and it's been amazing to watch our kids grow up and accomplish so much! We spend a lot of time chatting on the phone and running our online support group so we're always in touch, but there's something about actually kicking back and hanging out together that's SO MUCH FUN!! The kids had a blast too. They played and played and played...Jack got to meet Alicia's occupational therapist, and they loved playing with Mike in the Dora tent. Jack's Christmas list grew every time he would play with one of Alicia's toys! lol! We had a wonderful time and hope they will come stay with us soon!

Jack had an MRI under general anesthesia on Friday. He did so well. This is just routine and will give a better picture than his CT scan on file so we can get a look and discuss things with his neurologist. Most kids with neurological conditions should have an MRI within the first few years...we have our meeting with the neuro on Nov. 17th.

I am a little ticked at the seating clinic! We had our appointment the first week of August with the hopes that everything would be approved and ordered and ready 3 months later, which would be the first week of November. Well...they JUST GOT the letters of medical necessity on Friday....which means the last three months have been a total waste of time!!!!!!!!!!! If I knew who dropped the ball I'd go kick them REALLY, REALLY hard right now. I am so mad with myself for not following up sooner. I am going to call every Monday until we get the equipment. The woman I spoke to was very nice -- I didn't take out my frustrations on her. She explained the process and once they have the letters and get approval from insurance her job won't take but a week or two (purchasing and delivery). I do understand the wait...but my child NEEDS this equipment and because someone didn't get the letters out in a timely fashion it's going to take even longer.......... but there's nothing I can do.

I have been concerned about the special needs carseat for some time...I just wasn't sure it was going to fit in our minivan (the seats are small). Anyway, I still think Jack would benefit from it but I found something that I feel is a much better fit for Jack.When I learned that the seat hadn't been ordered yet, I immediately placed an order for this seat from Graco:

Graco CarGo Booster Seat

It goes from 20 to 100 lbs and has what I feel is just the right amount of support. So sometimes things happen for a reason. I also wanted to share this seat for those who have smaller cars and can't fit the bigger SN carseats. So now I must call the vendor and cancel the seat. I'll keep you posted!

Grandma Josie had to have surgery last week -- she's home now and on the mend. We are going to go over to her house and hand out candy. We'll probably do some trick or treating as well around her neighborhood. I will post a picture of Jack in his costume tomorrow, or later this evening if I get a moment.

Jack's sleeping has been ROTTEN for about a week now. He's going to bed with little fuss (which is a bonus for sure because that's usually not the case) -- but he's waking up very upset around 2 am every morning. He won't go back to sleep and wants to play after I get him settled down. I've tried shortening his nap which I would take away compleltey but he will fall over and go to sleep at school when I do that!! Anway, just a little vent on how little sleep we're getting. He does this from time to time and it hasn't helped that he's had a cold either. Pleas keep your fingers crossed for more sound sleep in our future.

Have a safe Trick or Treat tonight everyone!!!!!!!!!

Another busy day!

Jack had his 6 week post op appointment with his eye doctor this morning. While we were in the waiting room a fire alarm went off and we all had to evacuate. It's at the Outpatient Center so there were a lot of offices that had to evacuate -- it was a FALSE alarm, a child had pulled the alarm handle!! -- we went back in and were taken back to be seen.

Jack's eyes look nice and straight with the occasional turning out of his right eye. It's very brief. The eye doctor said Jack's RX in his glasses may be too strong now that his eyes aren't turning in any more. He thought for a while and decided Jack should go without glasses for 6 weeks. He said this should even out the eye that's turning out. I think Jack will be upset! He asks me for his glasses every time he's without them!! I am not sure if he'll need them in the future. I assume so because I think they helped with his farsightedness. Does anyone know if farsightedness can get better? I am nearsighted so I am not familiar with the opposite. I know my vision got better to the point of no glasses around 16...then slowly they got worse again and when I went to college I needed them again and still wear them now. Anyway, just curious.

After the eye doctor we went over to the Feeding Clinic and met with the dietitian. She is new to HMC and very informative and nice. She weighed and measured Jack -- 29 lbs, and 38 in. HE'S NOW 25% FOR WEIGHT, HEIGHT AND W/H RATIO!!!!!!!! In June he was less than 1%!!!!!!!! for weight and about 15% for height!!! I could not believe my ears!!!!! She did refer us to a GI doctor for Jack's ongoing constipation issues (since birth basically) and I don't think it will hurt to have one on the team anyway. I told her the only thing we've done differently was add the one 8 oz serving of Resource 1.5 JFK. I explained again the supplier problems and she is going to hunt one down for us. She really seemed serious too! I hope this gets resolved finally!

On a sad note, Jack's pediatrician has retired very suddenly effective immediately due to an illness. We are very shocked and sad. Her office is still open and taking calls and they said they are going to be working with her patients to find a new doctor. I wish her the best. She saved Jack's life when he was born (she was the ped on call and got him breathing and administered CPR). I am going to make some calls to other local peds to see if they accept our insurance and are a good fit for us.

Our CP Clinic Visit at CHOP

What a long day!

We left at 11:30 am and got to CHOP at 1:30. It was an easy drive with zero traffic. We checked in and Jack made a few new friends in the waiting area. He's so friendly -- and the other kids were so cute!

We met with the occupational therapist first. She had him show off some of his fine motor skills and Jack took to her right away. He was practically ready to go home with her! They tested his ability to handle small objects, draw, use scissors and she measured the range of motion in his right hand and arm. She suggested we have a new brace made that will hold his hand open a little more aggresively than our current Joe cool splint and our night splint (which he hasn't been wearing too much lately because it's too easy for him to take it off).

Our next visitor was a resident doctor of physical medicine. He came in and measured Jack's range of motion in his legs, and tested all of his refelxes. Jack liked him too -- although I think it's because he let Jack play with his stethoscope! Then Dr. Drake came in to see Jack. He suggested we do another round of Botox injections in both legs and his right hand. After the injections he will evaluate Jack for a new pair of DAFO braces for his legs. He felt we can get a few more weeks out of our current pair -- which I am hoping is true because it doesn't look like Jack has much more room to grow!

We then met with the physical therapist. He's very easy to talk to. We discussed different ways to "sneak" in some extra stretching. He said we should keep doing what we're doing!

We then went for hip xrays -- which I assume are okay, because we haven't heard anything to the contrary. His hips felt fine on examination -- the xray is just to be absolutely sure.

CHOP tomorrow!

Jack's school recently had slipper day! All the kids got to wear thier slippers to school for the day. We saw Elmo, Dora, Thomas the Train, and many other kinds of slippers! I had to find a pair that fit over Jack's braces, so we went with the older look! I think they looked cute!

Tomorrow we have an appointment at the CP Clinic at CHOP in Philly. Grandma Josie is going along again -- because daddy is up to his ears in work these days.

We will see the whole team, get some hip x-rays, a status on our equipment, an RX for new braces -- and a full physical exam and eval for future Botox. It's going to be a loooong day, but it's always so informative.

Oh, I had a BIG "DOH" moment this morning...I took Jack to PT, we had a great session and as I was gathering our stuff I looked in Jack's bag where I ALWAYS keep the keys...they weren't there! I figured they'd be in the bag somewhere...so in the lobby I am taking a part our whole bag...diapers are flying...Jack's crawling over to a gentleman and trying to steal his cane (that was kind of funny) and we're in everyone's way. The PT asked if there was anything she could do and offered to keep an eye on Jack while I went out to the van. I looked in the back window -- no keyes...I looked in the side window and there they sat right next to Jack's car seat! I must have set them down when I was getting him out! So we called Daddy and he came to the rescue! He works about a half hour away from the therapy center so he drove over to us, we took him back to work and now I have his car. We'll have to get the van first thing in the morning because we need it for CHOP tomorrow. Oh well, this kind of thing happens!

I think Jack and I are going to go for a little walk on this gorgeous afternoon! I will update when we get back from CHOP!

Two Lines!

Wow, two lines! Welcome to life little bean!! We are so happy to know you are on the way...

I found out by taking a first response pregnancy test on September 27th 2006. I saw the second line appear and my heart skipped a beat. I loved you already.

I called daddy at work and he was so excited. He would have jumped up and down if he could!


Today you are 5 weeks old.

The changes to your growing embryo are not quite as drastic this week as they've been in the last weeks. Growth is now focused on their little head, which is starting to develop much more rapidly than the rest of their tiny body. This is because their amazing brain is undergoing some very crucial and rapid development in order to effectively regulate their heart rate, blood circulation, and other vital functions. As for the rest of their miniature body, what were simple limb buds last week are limb flippers this week and the tail is more expressed. Amazingly, within a mere five weeks your little miracle is already developing the rudimentary forms of their liver, pancreas, lungs, stomach and nasal pits while their little heart is already increasing its circulation. Your baby is now a whopping 4-6mm in length.

I am feeling quite pregnant. Very tired...very, very tired! I am also in need of looser fitting pants already!