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

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?

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!

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.

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

I had never heard of this surgery and I found this link. http://www.stlouischildrens.org/tabid/109/itemid/643/Neurosurgeon-Performs-LifeChanging-Surgery.aspx

What a wonderful opportunity for the children who are given this chance! I tear up just thinking how much easier life will be for these precious ones!

Good luck to you all who are getting and have had this surgery!

Hi Tara, my 4 year old daughter Brooke had this surgery with Dr. Park in July, so everything is still very fresh in our minds! We stayed at the parkway hotel, which I would recommend. I think you can take the train from the airport, but we rented a car as we had my daughter's twin and grandmother with us. I would recommend leaving your 10 month old at home. It would have been nice to just focus on our daughter who was having the surgery. The surgery took about 3 hours. Despite the heavy medication the first day, Brooke was surprisingly alert afterwards and I would recommend books and videos for your daughter to keep her entertained while she is flat on her back in the ICU. (Brooke also enjoyed ice chips and needed vaseline for her lips in the ICU. After surgery, her lips and throat were very dry. These were not offered, but were provided once I asked for them) The heavy pain meds were discontinued the second day and after that Brooke had Tylenol with codeine and valium (to prevent muscle spasms.) By about day 4 I believe, Brooke was on Tylenol only. It was unbelievable!!! For the plane ride home to Portland (with a plane change in Phoenix) We only gave her one dose of Tylenol with codeine, not so much that she needed it, but because we wanted her to sleep. All in all, I was amazed at how little medication she needed considering that it is major surgery. Brooke never did take the prescription meds we were given once she was home. We are now 4 weeks post surgery and Brooke is still weak, but can do things she was not previously able to do, like sit criss cross. We do 3 physical therapy sessions a week (one is a 2 hour session). This enables us to do 4 hours, but only 3 days a week. Home therapy is hard, but she is only 4. Good luck to you and your daughter!

Jamie - Thank you for the update on Maggie. She sure is a success story for SDR! I hope that her new school year is going well. I've often wondered what Kaitlyn's social life will hold during those difficult teenage years. I'm glad to hear that Maggie is doing so well!

2winmom - Thank you so much for the information! I especially appreciate the tips about the ice chips and vaseline - these are things only other parents would think to share! You also put my mind at ease about the pain management following the surgery. Most of the parents here seem to be saying that it isn't as bad as they had anticipated. We are already putting together a list of things to bring to entertain Kaitlyn while she is confined to the bed. I can't imagine how we're going to explain to a 2 year old that she can't get up when she wants to, but I'm sure it will all work out.

It sounds as though Brooke's overall experience with the SDR has been great. I'm sure she'll continue to regain her strength, and do very well now that the surgery is behind her. I'd love to hear how she does over the next few months!

Tara

I have another quick question. Did any of you have private rooms, or did each of your children have a roomate? If you were in a room with another child, how did that work out?

Thanks!

I vaguely remember another bed in the same room that was sometimes empty, somtimes not. But I don't remember any big problems. I liked it better when we had the room all to ourselves. The other child did not have SDR, something totally different. It was fun to see another toddler around sometimes. They only stayed a day or so, I think. We were a little worried about that, but it turned out to be no big deal. Noah was constipated though. I think the parents have to monitor that closely and make sure the Nurses & Doctors treat it if it happens.

We shared a room with another SDR patient who had surgery the same day. We met the girl and her parents at the pre-op visit and saw them in the surgery waiting room. It was kind of nice going through the whole process with another family. We even had therapy at the same time and in the same room (with a different therapist) on the last day. If you have to share a room and have a choice, choose the side by the window, otherwise you are by the door and have more light/traffic.

Tara -

When Maggie was moved from the PICU to the neuro floor, she had a roommate. I believe he was about 4 and was also an SDR patient. He had a twin sister that did not show any signs of CP, from what I could tell. He went home on our 3rd day, but another girl was moved in that evening. She was in for some observation and eventually neuro surgery due to a severe fall.
As expected, hospitals can be very busy. It was kind of nice knowing Maggie was so sedated that she really didn't notice all the noise and commotion.

Jamie

Hi Kaitlynsmom--
I forgot to say one thing about Noah's SDR experience. The last two days Noah was in the hospital there, he was very uncomfortable at times. We thought he was constipated, and so the nurses treated him for that. We finally realized that he had a severe UTI, but not until he'd been home a couple of days. The nurses didn't check him for this, because we were so focused on the constipation as the source of his discomfort. Once we got that straightened out, he was much happier! I thought I'd tell you this in case you run into a similar situation up there. One thing that should have clued us all in was the strong urine smell.
bsjones

Thanks for the tip bsjones! That's especially helpful because Kaitlyn suffers from occassional constipation as it is, so I'm sure we would be inclined to look at that as the cause of any discomfort. We'll make sure to check closely for the possibility of a UTI if she is uncomfortable. Just over a month to go...

Tara

Kaitlynsmom:
Just checking in to see if you've been to St. Louis yet and how everything is going. How are the pre-op exercises going? I just reviewed our pre-surgery videotape and am amazed at how much more Noah can do since his surgery! Good luck with everything!

Hi NWMOM (and everyone else following Kaitlyn's progress!) -

Thanks for asking about Kaitlyn. Her surgery is scheduled for next Tuesday, 10/24. We are getting anxious and excited for her big day. Unfortunately both Kaitlyn and her 9 month old brother came down with a nasty cold, so we are busy trying to get everyone healthy before we leave this weekend.

I'm so glad to hear of Noah's continued progress. What are some of the things he can do now that he couldn't pre-SDR? It seems like he's made quite a bit of progress in the few months since his surgery - that's great!

Tara

Hi Kaitlyn's mom,
In case you haven't guessed, I'm BSJone's wife.
Noah can do lots of things better than before surgery:
--has much more control in walking and picking things up barefooted than before
--also has more control in his braces now--he can now climb stairs and descend stairs without holding someone's hand and is working on descending without holding a rail
Here are some things he couldn't do before surgery that he can do now:
--he can get in and out of toy cars and onto and off of hotwheels by himself
--he can pedal some
--he can walk up and down curbs
--he can get up from the middle of the floor by himself
--he can sit on floor without doing a W (we really had to work to get him out of that habit!)
Those are the main things I can think of.
Most of these things took a lot of work. We did all of the post-op exercises til mid-July, and then our PT helped us decide which ones he still needed help with, and we spent the rest of his daily exercise time focusing on just one thing per week that he really needed work on (like sidewalk curbs, etc.)
I know he couldn't have done most of these as well as he is without the surgery or without some way of reducing his tone.
Good luck to you all--we'll be thinking of you and wishing you the best!!!
nwmom

Hi Everyone -

I wanted to give you a quick update on Kaitlyn. We made the trip to St. Louis on Sunday and were scheduled for surgery on Tuesday. Kaitlyn did great at the pre-op physical therapy evaluation on Monday, and we all enjoyed meeting Dr. Park. Unfortunately, Kaitlyn fell ill Monday night. By Tuesday morning, she had a fever of 102. We brought her up to the surgical unit, and the team decided that it was not safe to perform the surgery with her being sick. We got on a plane, and flew home the same day.

As you can imagine we were extremely disappointed, but we would never put Kaitlyn at risk by allowing the surgery to go forward. The good news is that after meeting everyone, we feel more confident than ever that this is the right thing for Kaitlyn. We'll be going back to St. Louis in late December to have the surgery, and I'll be sure to update everyone then. Thanks for your continued support!

Tara

Dear Tara,

How disappointing! I'm so sorry to hear that surgery had to be postponed. But I'm glad your not viewing this set back as a 'bad sign'. Dr Park and his entire staff were great. Maggie has benefited so much from this surgery. I wish more DRs would inform their patients/parents about the SDR. We had never heard of it in our 13 years with Mag. And once we brought it up, our DR was very skeptical. He did not easily support our decision. But is now thrilled to see how much Maggie has improved.

We'll keep Kaitlyn in our prayers for a very healthy cold/flu free Holiday season!

Jamie

We are getting ready to go see Dr. Park for the 4-month follow-up on MON (2 months late). We are going to drive this time (SAT and SUN) and stay a few days to see the zoo, etc..

Kaitlynn's Mom, sorry it didn't work out, but I know everything will be fine in December. Noah continues to do fine and I am glad to hear that Maggie is also.

Best wishes to all !

Tara,

We were just wondering how Kaitlyn was getting along. Were you able to have the SDR in December? Hope all is well.

Jamie and Maggie

Hi All!

Sorry for not posting sooner, but things have been a little hectic! The good news is that Kaitlyn was finally able to get her surgery on 12/28. The procedure itself went well, but the recovery was not so smooth.

Following surgery, we were never able to see her in the recovery room where she was for an hour. She was apparently very uncomfortable and they were trying to get her settled. When we got to see her in the PICU, she was still in lots of pain. To make a long story short, she spent from noon on Thursday until 8:00 am on Friday (20 hours) having SEVERE spasms in her back. The spasms would come every 2 minutes, and Kaitlyn would scream in pain with each spasm. She couldn't get any rest, whereas most kids are pretty sleepy during that time. They increased the Fentanyl and Valium to the highest levels, but still no relief. She had the entire pain management team trying to help her, but to no avail. Finally, at 8:00 the next morning, Dr. Park looked at her, and determined she was having a terrible reaction to the Fentanyl. He took her off of it, and put her on Tylenol W/Codeine, and she was finally able to get some relief.

The next few days went pretty well, but the trip home was awful. Kaitlyn was vomiting all day (we still don't know if it had anything to do with the surgery, or if she picked up a stomach flu). Needless to say it was an unpleasant flight home for Kaitlyn, us, and the other passengers. We sure were happy to finally get her home!!!

We are now 10 days post-surgery, and Kaitlyn is slowly making progress. She is still fighing some stomach problems, and her energy is very low. She seems to be doing a little better each day, but we can see we have a very long road ahead of us.

I have a quick question for you other parents. Kaitlyn is very weak, which we expected. How long did it take your kids to get back to their pre-operative abilities? Kaitlyn is very frustrated by her inability to stand at the coffee table, where she previously spent lots of time playing. I'm hoping her strength will increase enough in about 4-6 weeks so she can do these types of things, but I'm not sure if that's unrealistic.

Thanks for all of your support, and I'm glad to hear that Maggie and Noah are continuing to do well! They are our inspiration!

Tara & Kaitlyn

Hi Tara!

I'm so sorry to hear that Kaitlyn had such a rough time. I hope the spasms have stopped or at least slowed down. Maggie had a bad reaction to the fentanyl too. Only not nearly as bad. Just a very bad case of the hives.

Progress the first couple weeks after we got home was pretty slow. But Maggie had to have a shunt revision, (for hydrocephalus), just four days after the SDR. So who knows if she would have improved faster if she had only had the SDR. I know for the first couple weeks I really had to support her when she walked back and forth to the bathroom. It was probably a good 4-6 weeks before she could get there and back on her own. It scared me so much because her balance was so different and she would fall so easily. And at 13 years old, it's a longer/harder fall. She's stubborn, and refused to use a walker that PT provided.

Her surgery was March 24 and I remember that by the end of the school year, (right around Memorial Day), she was back to 'normal', but would still fatigue quickly. She played on a baseball team for kids with disabilities through June and still used her wheelchair. She would just get too tired running the bases and standing in the out field. By the end of the season, (mid-July), she could play an entire game without using the wheelchair. By the end of August, she was back to school without using the wheelchair at all. We're now about 10 months post-SDR. She's definitely back to full strength and full abilities and then some. She walks so much better and easier. Her gait is not as wide, (movements side to side), as it used to be.

She's very happy that she had the SDR. We still may choose to have her right lower leg 'tweaked' with orthopedic surgery. Dr. Park informed us pre-surgery that he was not sure if the SDR would help her right foot. She's rotated quite a bit on the right leg and I think having it fixed could save her from some premature joint issues.

Tell Kaitlyn that Maggie and I are thinking about her and hope that her PT sessions aren't too painful.

Let me know if you have any other questions. I'm happy to share any info.

Jamie

Hi Kaitlynsmom!
Boy, you guys had a rough go of it--glad you are home and on the mend!

I remember Noah being more tired than usual for up to four months post-op, although we did see improvements each week in his strength and in the things he could do.

We were careful to do his post-op exercises every day, although our local PT said some were too advanced for him at this stage; so we skipped those.

At 2 months post-op, he'd gotten much better at the exercises and was quickly burning out on them. Plus I thought he wasn't back to his pre-op abilities as much as I thought he should be. So we'd pick a thing to work on each week (like stepping up and down off of curbs, climbing stairs, etc.), and we'd do that plus a few of the post-op exercises the local PT said were most important for him.

We just didn't have time to do all the post-op plus learning functional activities, too. It was a good switch for us. Noah started to make much more progress in his mobility and in his strength. Noah loves elevators and magic doors (like the ones at grocery stores); so we take him to the big church down the street or to the grocery store or the library to do his exercises. It is amazing to see the difference in his motivation by taking him somewhere like that to do his exercises. Hope this helps. Good luck with Kaitlyn. It is a long road, but well worth the efforts in how much better they feel and in what they can do after SDR.

magsmom & bsjones -

Thanks so much for the information on Maggie and Noah! It really helps to hear how they progressed. It sounds like the road to recovery was slow but steady for your kids, and I'm hoping Kaitlyn will have a similar experience. I really like the suggestion of finding different places to do her exercises.

Kaitlyn is still having some lower abdominal pain, and tells me several times a day that her stomach hurts. She is very lethargic, and has come down with a cold. Her pediatrician ran a test for a UTI yesterday, but that came back negative, so we're still trying to figure out what's causing the pain. Hopefully once we get that under control, we'll be able to focus more completely on her physical therapy.

In the meantime Kaitlyn's brother celebrated his 1st birthday yesterday, and is running circles around all of us! Needless to say things are quite busy here.

Thank you all so much for your continued support!

Tara

Kaitlynsmom--
For Noah, it's not what exercise are we doing, it's what game are we playing while doing the exercise that is most important! Therefore, I've found yard sales extremely helpful in picking up cheap toys, instruments or other odds and ends that he may enjoy making a game out of while exercising. Hope this helps and that Kaitlyn is regaining more of her strength by now.
NWmom