SDR Parents - Questions! - Cerebral Palsy Message Board

Kaitlynsmom · 08-24-2006, 01:03 PM

Well, it's official, Kaitlyn will be going for the SDR with Dr. Park in late October. We are really excited, and of course very nervous too! Here are a few questions on logistics for all of you parents who have made the trip out there...

1. Did any of you stay at the Parkway Hotel? If so, how were the accomodations? My husband and I plan to switch off sleeping at the hospital, so one of us would be at the hotel each night.

2. We are wondering if we need to rent a car, or if we can get by without one. Is the Parkway hotel within walking distance of the hospital? If not, is there a shuttle to take us back and forth? If so, how often does it run? Also, are there shops and restaurants within walking distance of the hotel?

Finally, as far as the surgery goes, our biggest concern is the immediate recovery period. How much pain did your kids experience immediately following the surgery? How about when they got home? For those of you who flew, how did your child manage on the plane ride home?

Okay, that should do it for now. Thanks for any help you can give us!

Tara

bsjones · 08-25-2006, 11:46 AM

Congrastulations! Noah is doing better and better, so I bet you will have good results too!

1. Parkway Hotel was great. We really liked it.

2. The Parkway hotel is right next to the hospital, connected by a covered, air-conditioned walkway. No need for a car to go from hotel to hospital. We got a ride from the hotel to a grocery store to buy bottled water.

There are plenty of restaurants around there (one in the hotel and several accross the street), plus the children's hospital has a really, really good cafeteria.

Noah was in pain for a day or two, but they kept him pretty sedated. After he got home, the pain was gone, but he was still weak.

He did OK on the flight(s) home, I don't remember any problems. Getting the car seat on and off was tricky and hard work.

Do you have any other children going with you?

Kaitlynsmom · 08-25-2006, 12:18 PM

Thanks bjsones! I'm so glad to hear that Noah is doing well!

We have a baby who will be 10 months old in October. I think we are going to leave him behind with my parents for that week. We thought about bringing him along, simply because I feel terrible leaving him (I've never left him with anyone, and since my parents live out of state, he really doesn't know them). However, we think that he'll be fine with his grandparents, leaving us able to give 100% focus to Kaitlyn. I know that Noah's brother tagged along with you, but I'm guessing that it was a little easier for you since he's older.

So how is PT going? How many times per week is Noah going? We're trying to figure that out so we can get our finances in order.

Thanks!

bsjones · 08-25-2006, 03:50 PM

That all sounds good. Noah gets 4 PT per week, plus one "swim therapy" that he really likes. He hope to reduce this soon since he is doing well and it is coming up on his 4-month review. Best of luck to you! I will check here often to follow your process.

By the way, the cafeteria in the Chidren's Hospital is on the Lower Level (LL) or the "Lunch Level". We had a little trouble finding it at first until we learned this.

MagsMom · 08-26-2006, 12:14 PM

Hi Tara,

I second everything that bsjones has noted. (And bsjones - I'm so glad to hear that Noah continues to improve!). We also stayed at the Parkway and it was very clean, comfortable, and very close. The hospital should give you some information on how to get their special rate.

Maggie (13Y) had the SDR on March 24. We started PT the week after we were home. 4 45-minute sessions each week. At our 4 month check in July, Dr. Park changed it to 3 sessions/week for the next 6 months and then said 2 sessions per week for the following 6 months. Then we'll see him again for our final checkup.

Mag was an independent ambulator prior to surgery. She was just having a lot of leg and foot pain and starting to get some contractures with her adolescent growth. Last September, the pain was so bad that she began using a wheelchair at school to get around. The pain really increased her fatigue too. We looked at the SDR and the more traditional orthopedic tendon lengthening as our best options. After meeting with both DRs and researching both thouroughly, we decided to go with Dr. Park and the SDR. And we're very glad we did. Maggie has regained all of her independence. She does not use her wheelchair anymore. When she returned to school in April after the surgery, she was still using the wheelchair. It takes a while to get their full strength back. She just returned this week for a new year without the wheelchair and the teachers were so surprised at how much taller she is. She stands so much straighter and stronger.

Maggie was quite sedated in the hospital, which was nice because it allowed her to rest during the first couple days that they can't be moved. On day 5 Mag had to have a second unplanned, unrelated, shunt surgery for her hydrocephalus. We were still able to go home on day 6 and even with both surgeries she didn't require too much pain medicine. I think she only used it for the first couple days that she was home.

Our ride home was by car. We're only about 3 hours from St. Louis.

Best of luck. We'll be thinking of you guys. Keep us all posted on how things go.

Jamie