Sorry that I wasn't able to blog right after KJ's appointments at CHOP last week Wednesday but we left directly from CHOP to go home. So, let me give you all of the medical updates.....and as noted in past blogs, Shawna is our resident medical expert so I try to give you the Readers Digest version and if you want more complete, in-depth, accurate info., feel free to get a hold of her at 1-800-WELUVKJ. We got the boys up quite early in the morning after our one night at the Ronald McDonald house (we stayed in room 44 for the night....our extended stay last fall was in room 43 so the boys new right where to go!!) to make sure we got to CHOP in plenty of time for appointment #1 at 9:30 with Dr. Heuer, the surgeon who closed KJ's opening on her back. We really like him and his very laid back demeanor. As expected, 9:30 turned into about 10:00 before we saw him but to see one of the top surgeons in the world and one of who (whom??? English people, which one) used his abilities to make the life of KJ the best that it could possibly be, we're not going to complain. To give you a quick outlook of what I mean when I talk about his demeanor, after coming into the room and having a quick greet with us, he casually peeked at KJ's scar and after about 15 seconds, said, "So, do you guys want this to look a little better?" His tone was so down to earth, not worried, just saying that the wound looks okay but he went on to further explain that it felt like it had been hardening up in spots that could give her some discomfort and keep her from her maximum mobility in the future so he suggested that he and a plastic surgeon do a routine procedure on KJ in the next few months that will take care of any of that and make the wound look a little better. He needs us to have an MRI done here and sent to him so that he can rule out her having any cysts that could develop on or around her spine that would need to be taken care of surgically as well, as that would be a little more major surgery. He didn't think she had one, but wanted to make sure. Once we get that to him, we'll schedule a surgery date with him, hopefully later this summer or early fall. He said it's just an overnight or others that we've talked to that had the same procedure were back at CHOP for just a few days.....so, nothing serious. Dr. Heuer said he thought KJ looks great, and most importantly said that her head looked great and was 99% sure we're in the clear for having to have any shunts put in. Going back to the biggest reason we chose to move forward with the MMC prenatal repair was to avoid shunts having to be placed in her head around her brain. He also, in contradiction to what another doctor told us later in the day, that KJ looked like she was functioning more like a L4 infant would be at in terms of her movements at her knees and hips (she was an L3....those numbers tell you where the opening on a babies back was and the higher the number, the more lower body functioning they are probably going to have).
Dr. Heuer is originally from Minnesota so he considers himself a mid-westerner and said it was nice to see some mid-westerners come through. He said he remembered us being from the midwest right when he saw us. Well, I wasn't sure how to react to that.
This is what us three boys had on. Now, all wearing the same Philadelphia Eagles jersey (Yes, I know it's of DeMarco Murray who doesn't play for them anymore....trade after one season to the Tennessee Titans....but, remember we shop "Dutch" and in an attempt to support the team of the city that supported us we've sort of become fans of the Eagles and Flyers as they both support the Ronald McDonald House, I bought these jerseys as they were on sale for $10 each) with athletic and/or camo shorts on, that's what sparked his memory that we were from the midwest? I'll take that as a compliment about our "laid back" attitude about dress as others may interpret it as the fact we don't give a hoot about what we look like and tend to appear a bit....oh I can't think of a better or more PC way to say it, white trash? Whatever, who cares....Go Eagles!!
Oh yeah, he did have one concern....not really, just commented on KJ's legs and their girth!! She's a healthy baby, I think is how we look at it. Chuckling, he said "You might want to feed her a few more salads!!!" We got a kick out of that. As we carried her around Philly and CHOP we heard so many background comments from people around us about her "cute legs."
After meeting with Dr. Heuer, we moved to another wing of the hospital we'd never been in (amazing that there was a place we hadn't been to after spending 3 months there) to meet with their physical therapy people and orthopedic doctor in their Spina Bifida Clinic . The PT ladies said it looks like she's doing just fine but that we'll need to get more aggressive and up the frequency of her PT to activate the movement/flexibility of her leg muscles.
We had plenty of time (an understatement) to kill as we waited for the orthopedic doctor in the hospital room but fortunately the boys were on their best behavior and were able to run around a bit and invent a game where they hid just outside of the doors to the room we were waiting and come running in, roaring like dinosaurs and got KJ giggling quite hard.
As the boys were reaching their patience limit, we went out to some of the play areas they have for kids (yes, remember it's a children's hospital so waiting there and keeping kids occupied is really not a problem) while Shawna and KJ waited for and met with the orthopedic doctor. He is one of the best in the world and his goal is to get all kids with spina bifida walking and he's been very successful in he 30+ year career in doing so. We felt very fortunate to have the chance to have him assess KJ but were not prepared for his matter-of-fact, no nonsense, blunt way of going about his business. He, as opposed to Dr. Hoyer, felt like she was functioning at a low L3, she was too overweight which would impede on her gross motor skills, and was concerned about her left heel not having dropped to where he'd like it to be after her tenotomy and cautioned us that if we couldn't get that to drop, we could be looking at more aggressive surgery and castings in the future. So, we appreciated his honesty and will be working on her heels with some stretching that will hopefully steer us clear of having to go the route he warned of us having to go.
We were finally out of CHOP at 1pm, just a bit late to go back to the Ronald McDonald House for a pizza lunch with the former NFL Super Bowl winning coach, Dick Vermeil. Lawrence, one of the workers at the Ronald McDonald House who is in charge of fundraising for the house who we got to know in our stay there, invited us to the luncheon to meet Coach Vermeil if we could. One of his coaching stops was obviously with Eagles and he's been a supporter along with the Eagles organization of the PRMH. We may have been able to get back for the end of it, but with some hungry and tired boys (and parents), we thought it best to get on the road if we wanted to make it back the the land of Z at any sort of decent hour. Shawna really wanted to go back to work that Thursday, as well, so she was really pushing to get on the road (sense my sarcasm....CareLinc folks, don't take offense to that....I'm just kidding).
We made record time on the way home, only stopping twice (dangit, the first stop was due to me, again, just as it was on the way out, but this one was much longer into the trip than the 45 minutes on the way out). We pulled into our driveway at 1am.....12 hours!!! It's amazing how much faster you can travel when pit stops AREN'T needed for the bathroom. The boys have acquired the ability to pee into bottles and diapers while we're on the go so unless Shawna or I needs to go, we stay on the go (and I'll toot our own horns as we also have the ability to do our thing while the vehicle is in motion!!). The kiddos were awesome travelers on the way home and I don't think we heard, even one time, "this is taking for a long time (Myles)" or "this is taking forever (Peyton)" but we did hear Kierstyn's verstion...."waaaaaaaa, waaaaaaaaaaa, waaaaaaaaaaa". Oh well, we could handle that.
As mentioned, I wasn't able to blog the last few days about our appointments because by the time we got home, spent Thursday working (Shawna) or unpacking and repacking for the holiday weekend up a the cabin, there wasn't anytime before getting back into Mommies Gold Van and going north to Barryton and the Buche compound and our cabin. We enjoyed some R & R with fam and friends and the extraordinary fireworks at Evart (and people watching....although I think of us at CHOP with our jerseys and camo on and we were the ones being watched for entertainment, is my guess) on the Chippewa River. So, I blog after spending a great 5 days in Philly and 3 days at the cabin. We feel very good about where KJ is at in her short 7 months with us continue to try to follow the best path for her. Thanks for all of your prayers, comments, and support. We couldn't be doing this without them.
Oh, and lastly, I did just use the FREE VAC at the new Quality Car Wash on Waverly and Chicago Drive and apologize for, probably, clogging the 4th vacuum in from the left (if you're looking at the vacuums from the building....I never truly knew how many Skittles, Mike & Ikes, donut crumbs, etc. our boys DON'T get in their mouths).
CHOOSING JOY.....back in ZTown
One last link to watch...pretty cool piece CHOP did with stuff from the reunion (KJ's got a nice close-up in it):
https://m.facebook.com/story.php?story_fbid=1214417995267598&id=136817849694290&refsrc=https%3A%2F%2Fm.facebook.com%2FTheCenterforFetalDiagnosisandTreatmentatCHOP%2Fvideos%2F1214417995267598%2F&_rdr
-Jeff
