Thursday, December 21, 2006

The Croc and the Keekaroo...

I know it sounds like I'm talking about the zoo -- LOL!!

They both arrived yesterday.

I am floored at how much I already LOVE the new equipment...take a look!

The Keekaroo with the tray
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The Keekaroo without the tray
LOOK at how STRAIGHT he's sitting!!
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The chair is excellent quality. I ordered the padding and it looks durable and comfy. It did require assembly, but it wasn't hard. I highly suggest this chair!

Now, the croc! At first it was iffy -- Jack was leary of the vendor guy and didn't know what to make of the croc walker. After the man left and after Jack had his nap we tried again. It's so adjustable it's got literally hundreds of configurations. It comes with a little pouch to hold the allen (alan??) wrench. He can steer and everything!! This is something he couldn't do until this afternoon! His walking was limited to a straight line! Now, he's all over the house!!! His first task was to go to the Christmas tree (laughing all the way)!!!

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I hope to bring it with us more places because he truly is independent with it (except getting up into it, but we'll work on that!) He needs room to roam! I was thinking of the corridors at the hospital (let him run over a few people -- ha ha) or the mall early in the morning before the stores open. Of course the mall will wait until after Christmas. Any other indoor ideas?

Jason was amazed too. This isn't just a subtle difference -- this is a jaw dropping, jump up and down difference!

Wednesday, December 20, 2006

Jack's Christmas Program

The kids were so cute. They wore reindeer antlers on their heads and sang several songs (although most just looked a little stunned to have an audience). I was giggling through tears. It was so sweet and so cute! After they sang their songs the kids got a HUGE surprise!!! SANTA CLAUS came to visit!!!!! Some were scared, some seemed indifferent, and others seemed rather happy to see the man in the red suit! Jack was all three!

Jack and Miss L. his teacher.
He was asking her if he could come sit
with mommy, grandma and grandpa!!


Jack takes a "cookie" from the
"cookie jar" to give to Santa Claus!!


HI SANTA!!!!



Jack Tells Santa his
Christmas list!





Sunday, December 17, 2006

The Keekaroo...(funny name, I know)

Oh, wow -- strange how things happen. I was browing American Baby magazine and found a small advertisement in the back for a chair that looks a lot like the tripp trapp chair!

It's MUCH MUCH less expensive and the ad had a code for a FREE TRAY! They also pay for shipping too. The chair is designed to fit a child (Typical or SN) from 6 mos. to 15+ years!

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Check it out at:

http://www.keekaroo.com

With the chair, cushions, and free tray my total was $175 -- I am thrilled considering the ordeal we're having with the feeding chair and insurance.

Yay, it's a good day!

Thursday, December 14, 2006

The CROC is COMING!!!!!

WOW!!! What a great Christmas present!! Jack's walker is going to be delivered on Dec. 20th!!!!! The rep will come to the house and everything!!!!

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This has been since JUNE!!!! Wow, I never realized how s-l-o-w of a process getting DME is!

The Wheelchair is on order and several pieces have arrived at the Philadelphia office. We'll have to travel to Philadelphia (2 hr trip) to get the chair -- could be before Christmas too! I am excited to get the chair too. I will be waiting for his next IEP meeting to send it to school with him.

Does anyone use a wheel chair at school? I have to be sure he won't be "stuck" in it all day -- I know the school is great with getting kids in different postions/equipment throughout the day but I really want to emphasize that it's to be used in place of the cart he uses now.

The feeding chair is another story! Our insurance denied the claim because the say it's not medically needed and they won't pay for "comfort" features or items that make it easier for the caregiver. It's for safety, positioning, etc. Jack is getting dangerous in his booster chair! He's too big and when he rocks I am afraid he's going to tip the dining chair! I am thinking of calling the school to see if we can borrow something -- perhaps a tripp trapp chair? We are appealing and I haven't heard yet whether or not they will cover it. I am not getting worked up over it because to me the most important items are on the way!!!! YAY!

Any ideas on what to do for Jack in the meantime (inexpensive ones, anyway?) this is what he uses now: (this pic is almost a year old -- so he's MUCH bigger now in the chair)...

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MFM Check Up

Everything went well today. The bean has a great heartbeat! It was so neat to hear. It was a rather quick and uneventful exam.

I have to go for blood work next week and then in 3 weeks I will return for:
  • Urine Culture (make sure the nasty bug is GONE)
  • The HEAD to TOE ultrasound!!
  • Cervical Measurements
  • Quad Screening results
At that time we will most likely know the sex of the baby bean!! Wow, it seems to be going so quickly.

Bean's been very active -- I noticed a lot of movement yesterday and I got up to use the bathroom at 5 am, and stayed awake for a long time feeling bean shake and dance. It's like a tiny flutter -- so sweet to feel!

Anyway, Jack's not feeling well -- he has a slight fever. This will be his 4th illness since Thanksgiving. That's basically every day since...so I am going to run and get jammies on him so we can cuddle in front of the tv till bedtime!

Wednesday, December 13, 2006

15 Weeks Today!

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I love this cartoon! While I haven't gone quite that berserk, I have been madly craving vinegar!! Pickles, pickled veggies, pickled beets, pickled eggs, salt and vinegar chips...oil and vinegar salad dressing, stuffed olives, just to name a few!

I am knocking on wood -- I think I am finally rid of my bladder infection!!! Thank goodness. Bladder infections are no fun, especially when pregnant. I will have a urinalysis tomorrow to be sure the bacteria count is down or preferably ZERO! I am currently taking Macrobid -- which is not a fun pill. It makes me sleepy, dizzy and sick to my stomach (and no, it's not all of the vinegar...LOL). Two more days of pills left.

From BabyCenter.com

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15 weeks:
At around 4 inches long, crown to rump, your baby now weighs about 2 1/2 ounces. He's busy inhaling and exhaling amniotic fluid, which will help develop the air sacs in his lungs. His legs are growing longer than his arms now, and he can move all his joints and limbs. That means his hands are more functional, too. Sweat glands are appearing, and although his eyelids are fused shut, he can sense light. If you shine a flashlight at your tummy, he's likely to move away from the beam. There's not much for your baby to taste at this point, but his taste buds are beginning to form. And if you have an ultrasound
, you may be able to find out whether your baby's a boy or girl! (Don't be disappointed if it remains a mystery, though. Nailing down the gender depends somewhat on how clear the picture is and the position of your baby during the ultrasound; he may be curled or turned in such a way as to keep you in suspense.)

I will have another update tomorrow after my MFM appointment! I don't know if they are planning an ultrasound or not -- I know we are going to discuss the injections which we've decided against, and I will be getting the quad marker screening done at the lab (for genetics).

Till tomorrow!

Jack's Report Card...

The first score was from June, the second score is from December. There have been slight improvemets, no regression and overall looks pretty good to me!

I can't believe it will soon be a year since he started school!!!

If I had to "grade" him at home, or for outpatient therapy some of the items would be marked mastered. I understand the importance of measuring at school. It's a different environment without mommy or daddy, or a one on one therapist to give cues or encouragement!

I am very proud of our school boy!!

M - Mastered
I - Improvement
SI - Slight Improvement
NC - No Change
R - Regression

Imitate at least 5 consonant vowel combinations (mi for milk, ba for ball, etc.) -- SI, M

Build a vocabulary of at least 20 words and use two word utterances -- NC, SI

Initiate requests (verbal, signs or pictures) 10 times a day -- NC, NC

Follow one step directions -- NC, NC

Identify 30 vocabulary words (point to object or picture) -- NC, NC

Use two hands together to hold materials steady and use walker -- SI, NC

Visually attend to a book for at least 60 seconds -- SI, I

During book time visually locate a familiar object or character 4/5 times. -- SI, SI

Use walker in classroom independently -- I, I

Tuesday, December 12, 2006

An Update, Finally!

I feel even though I am taking it "easy" we've been busier than ever! Jack is doing very well. He's had somewhat of a cold for over a week, but it's not keeping him down at all. Just lots of sneezing and tissues...no fever, no crankiness -- so I'll just keep an eye on it.

I took Jack for his EEG last week. If I haven't mentioned it before, we do NOT enjoy these tests...I did have to go solo, but I asked for someone there to help me restrain him. I don't have the results yet -- probably in a day or two. I am still scraping the glue off of his gorgeous little head! like anything though he just moves on and doesn't hold a grudge.

We picked up Jack's new braces yesterday -- and I must remember to write a note to school to let them know he may be awkward in them a few days until he gets used to the bigger size. They aren't any taller than his last pair but the "shoe" size went from a 9 to an 11 and 1/2...that has to be strange to all of a sudden have your feet two and a half sizes bigger.

I hope everyone will say a prayer for grandpa Bob this week. He's having a cardiac procedure done to open an artery. He had a heart attack several weeks ago and spent some time in the hospital. He's resting and healing and hopefully will continue to feel better and better as the weeks go on.

Grandma Linda and Brian are in our thoughts and prayers too. Brian spent a few days in the hospital recently -- we hope you're feeling better soon!!

Grandma Josie is totally recovered and back in action!! Woo hoo!

NO MORE FAMILY IN THE HOSPITAL PLEASE!!!!! This is an ORDER!!

I am feeling great with the exception of a recurring bladder infection. Hopefully the new meds I am on kick it out of my system for good. UGH! I hate taking medication while pregnant, but an untreated bladder infection can be very harmful for the baby and mommy. I have my 15 week check up on Thursday -- tune in at the Bean's Blog later this week!

I wanted to share Jack's Wishlist from Wal-Mart, um, errrr, I mean from Santa, just in case any of the grandparents were stuck for ideas this year for Jack. If you already got something that's on the list, let me know and I'll mark it as purchased.

Wow, it's time to go get Jack ready for school! Oh, and for a good chuckle here are some "Out Takes" from our Christmas Card picture session!!! The final pick will be in a mailbox near you soon, or for those of you far away I'll post it in our Christmas album!


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Tuesday, December 05, 2006

New Pictures!

I totally forgot to upload pictures from October and November...

The albums are ready to view!!

VIEW PICS!

Enjoy!

P.S.: For those who cannot yet comment I am sorry! I have contaced Blogger again about the issue. I hope it resolves with time.

Friday, December 01, 2006

13 Weeks, 2 Days...

From Baby-Gaga:

Fetal development in pregnancy week 13:

This is your final week in the first trimester and your little weed continues to grow and grow and grow. Of the three trimesters, this one has been the most important for your little one’s development. He or she now weighs about 2.5 ounces and is roughly 3.5” in length. Little hairs, known as lanugo, will start to cover their body this week, as their sense of taste and smell are further refined. Their cozy little amniotic sac is also increasing in size and mass, as it continues to fill with more fluid.

I am feeling much less tired! WOO HOO! I am also less nauseous too which is WONDERFUL. I am showing quite a bit and had to put most of my regular clothing away! I am looking forward to my next MFM (Maternal Fetal Medicine) visit on 12/14.

I swear I feel the little bugger kicking me already -- but it's hard to say for sure. I know I felt Jack move for the first time in my 14th week...so it wouldn't be totally out of the question! Cool!!

Testing Comments...

We've been having some commenting issues -- and I am hoping it's resolved. Please take a moment to comment to this thread so I can test it out. If you are unable to comment please send an e-mail to ang_wilhelm@hotmail.com and describe the issue.

Thanks for your help!!!

PS -- an overdue update is coming soon!

Tuesday, November 21, 2006

Neurology 101


We saw Jack's neurologist last week to discuss the MRI he had done at the end of October. We discussed the different areas of Jack's brain that were affected by his grade 4 bleed. I really like our new neuro. He was drawing diagrams, breaking out his full color pictures of the human brain and very interested in answering my questions.

First question (and the main reason for the MRI) was to take a look at Jack's Corpus Callosum. As explained before, Jack was suspected to have Complete Agenesis of the Corpus Callosum (meaning the structure that connects the two hemispheres of the brain is missing). However, the MRI reveled a different finding. Jack's Corpus Callosum is formed normally in the front (anterior) and is thin (hypoplastic) in the back part (posterior.) So, this changes things on paper but doesn't really affect us in any other way. So a new diagnosis would be Hypoplasia of the Posterior Corpus Callosum. This was most likely due to the trauma of being born at 25 weeks.

We discussed his PVL (damage due to grade 4 bleed), ventricles, and other areas as well. There isn't anything new or changing and I didn't see or learn anything I haven't before. I appreciated the time he took to answer my questions. Not all doctors are willing to do this.

We talked about Jack's spasticity. He disagrees with the use of Botox in several locations at once. I repect his opinion, but we are still going forward with the injections at CHOP in February. We discussed surgical options like the SDR or the baclofen pump. Both are neurosurgery and luckily we are VERY familiar with our neurosurgeon. This was just a discussion -- we are in no way ready to put Jack through major surgery at this time. We will keep our minds open and continue to ask and discuss everything with our specialists.

Jack has an EEG scheduled for December 7th. If there are any willing participants I sure could use a hand at this appointment! These tests bother Jack so much and he needs restrained. I am hoping daddy can come with us especially because I do have to watch how much I do physically. Jack's medication levels look good so we did not increase his Tegretol at this time. He's also been seizure free so we're doing well at the moment. The neuro told me to call about 3 days after the EEG to discuss the findings. At this time we will increase meds if indicated on the EEG or we will wait until we have our 4 month follow up.

Yesterday I took Jack to get casted for a new pair of DAFO braces. I could not believe how BIG the casts looked!!! Jack picked dinosaurs...again....but this time I chose green padding and strapping instead of blue. He was also measured for a hand brace as well. Those only come in gray...we should be picking everything up in about two weeks.

This afternoon we have our 6 week follow up with the eye doctor. 6 weeks ago the doctor decided to give Jack a break from his glasses to avoid over-correcting his eye muscles because they were in a pretty good position at the time. I feel Jack will be in glasses again perhaps just not as strong of a Rx.

Is everyone ready for Thanksgiving? We are celebrating at home, just the three of us. Then we may go visiting or have visitors...it's all fine with me! I am totally flexible.

Thursday, November 16, 2006

11 Weeks, 1 Day


Maternal Fetal Medicine
I met with Dr. B. today for what was a very informative meeting. I really like his manner of speaking. He has a very difficult job, one that I would not want, but am sure glad we are blessed with people like him on this planet.

We discussed a relatively new type of therapy for preterm labor. It's called 17-P. When he started talking about the injection, I became excited and hopeful. There were studies showing a decrease in preterm labor and delivery with 17-P injection therapy. But I knew there would be the other side of the coin. I listened carefully and then learned that the FDA has yet to approve 17-P. This blurb from Wikipedia explains and sums up the risks involved.

The application of 17OHP has been shown to be useful to delay premature labor in pregnancy.

The use of 17-hydroxyprogesterone caproate in pregnancy to prevent preterm birth is not recommended without further study according to two authorities.

A 2006 Cochrane Review concluded "...important maternal and infant outcomes have been poorly reported to date... information regarding the potential harms of progesterone therapy to prevent preterm birth is limited" There was a similar conclusion from a review by Marc Keirse. Three clinical studies of 250mg/week of i.m. 17-hydroxyprogesterone caproate have all shown a trend for an increase in pregnancy loss due to miscarriage compared to placebo.

A meta-analysis by Keirse showed a trend for an increase in miscarriage with 17-hydroxyprogesterone caproate compared to placebo.

There has also been a study in rhesus monkeys where all rhesus fetuses exposed to 1 and 10 times the human dose equivalent of 17-hydroxyprogesterone caproate died in utero. Currently (2006), 17-hydroxyprogesterone caproate is a category D progestin according to the FDA (evidence of fetal harm). There is speculation that the castor oil in the 17-hydroxyprogesterone caproate formulation may not be beneficial for pregnancy.

So, while it's wonderful to know we're on the brink of helping prevent preterm labor and delivery, I am not ready at this time to deal with the risks of 17-P.

We discussed his opinion of my chances of another preterm delivery and he put me at 16-23% based on my history and medical records. This is good news because I truly thought the chances were much, much higher.

We discussed stress management, both physically and mentally. This is something we've been working on at home for the last few months. One small example of something we can control is having Jason take the dirty laundry downstairs. That saves me strain of carrying the HUGE, OVERFLOWING basket...also, Jack is taking the bus to school now which cuts out a lot of carrying and lifting...although I do still carry him on the bus and into his seat. We talked about lifting properly and not bearing down or straining when lifting...rather, use my legs. I am sure I could even ask Jack's physical therapist on some ways to help ease the strain while lifting and carrying our ever growing little man! As for the mental stress I am taking it as easy as possible. Stress is NOT good for the baby. In fact, stress hormones are directly related to premature labor! I am trying really hard to relax.

I go back in 4 weeks' time which by then I will be 15 weeks pregnant! We will do the quad screening (genetics) at this time and also an ultrasound.

We will start measuring my cervix and tracking any changes at 18 weeks. I believe he mentioned this would be done weekly for several weeks.

We discussed the need for a repeat c-section due to the fact that Jack was taken via a classical incision which an up and down cut on the uterus. This is less stable and can lead to uterine rupture if the pregnancy goes all the way to 40 weeks. This could be fatal for me and the baby. So we'll do a fetal lung maturity test beginning at 37 weeks and as soon as the lungs are ready we'll schedule the section.

I really feel I am getting good care. It helps to ease my mind and I am doing a good job of enjoying being pregnant! We are very excited and happy. And YES as soon as they can tell I WILL know what we're having!!!!


Wednesday, November 01, 2006

9 Weeks Old Today!



From baby-gaga.com :

Fetal development in pregnancy week 9:


Voila! Your amazing growing baby has now been accepted into to the fetus-club, a very exclusive and exiting new stage in their prenatal development. Basically, this means the little sweet pea has graduated from swimming embryo creature to a recognizable human being! This week in particular, the irises of their little eyes can function, but (frustratingly for them?) their eyelids remain fused shut for a while yet. The external ears are formed, and their inner ears are now filled with fluid—so your little one actually has started to develop their sense of balance. Your baby's little swimmer legs are still relatively short, although other developments are going forward at a nice pace: their kidney is actually functioning now, which means they’ve started urinating.

Photo Courtesy of brillbaby.com

I feel HUGE already! I've been wearing elastic waiste pants and maternity tops already. I met with a nurse at HMC last week. She was very nice and informative. I had labs done as well. I will be a high risk patient at Maternal Fetal Medicince and will be monitored very closely.


Next week (at 10 weeks) I meet with Dr. T. at HMC. This will be my last appointment before I move over to MFM. The nurse said there would most likely be a quick bedside ultrasound done at this visit! Oh, I hope so...we love our pictures in this family! LOL


I am under the weather a bit and have an appointment with my family doctor tomorrow morning. I believe I caught whatever virus Jack has at the moment. He saw his dr. yesterday and found out he has an ear infection! Poor guy.


Well, must go get Jack ready for school!

Tuesday, October 31, 2006

Happy Halloween!!


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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!!!!!!!!!

Friday, October 13, 2006

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!! ohmy.gif ohmy.gif ohmy.gif -- 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.

Wednesday, October 11, 2006

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.

Monday, October 09, 2006

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!

Wednesday, October 04, 2006

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!

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