It had been October since David was last at Shriners. If you remember the last trip I was almost sick with fear that I was going to hear that I was failing my child and that I wasn't doing the right things to get him where he needed to be. Luckily I was just paranoid and Dr. Keeler talked me off the ledge. This time....after several reschedulings some on their part a couple on mine......I wasn't nearly as nervous, but I was expecting different things than I heard.
For anyone who has never been to Shriners....when they are dealing with your child, their emphasis is on what they see as the best way to get your child where he/she needs to be....whether this means walking, sitting, standing, etc. With kids like David....the route from A to Z is extensive and full of information. Lots and lots of information. It can be tremendously overwhelming at times. No matter how hard you listen or even if you take notes.....you simply can never get all the information in one visit. Your mind can only process so much and when the info is about your child and you are dealing with unfamiliar treatments, surgeries and terminology.....you can leave a visit feeling as if you have been hit by a semi and walked away. Add to that a lengthy drive home and it can really be exhaustive.
After our first visit there this is how I felt. Processing all the information was almost impossible, so I picked out what I felt was the REALLY important stuff and focused on that. Apparently I set a precedent and that is how I do it every time now. I guess it is my way of keeping sane through all of this. At any rate now, each new visit becomes like a new chapter or unfolding of new (sometimes reiterated) information. It is almost as if I am processing the information as I need it. At least that is how I feel.
So David is just barely over a year out from his surgery. A year ago....this point in time was targeted as a milestone. Dr. K felt that most of his pre-surgery movement and ability would be back by now and that we would be looking to move onto step two which will be the next surgery to remove the plates that were originally placed. In my opinion a lot of his pre-surgery ability is back, but not all. In the last months he has started crawling and trying to pull up on stuff, but his efforts to stand are in vain as his feet won't cooperate. He has gone from being very tight with hips rotated inward before surgery....to much much looser with hips rotated out (unless I have that backwards...but you get the drift. We are opposite now). His lower legs and feet now tend to hang and cross. Also...the one foot that I have worried about since surgery that seemed to be just flopping...still seems to flop. His feet frustrate him to the point that he refuses to even try to walk with his walker anymore. That frustration also resulted in the one meltdown David had yesterday. If anyone thinks David does not understand things.....being in that room yesterday would have shut that theory down completely. The physical therapist (PT) was talking to me and she wanted me to put David on his walker so she could see what the walker issues were. She said "walker" and David popped up off the bed and started getting mad. He grabbed at me and pointed to his wheel chair. I said, "No...you are going to stand up on your walker so they can check you out!" That is all it took. He shook his head NO and he started punching and screaming. Yes....his frustration was to this point. After a punch that landed squarely in my eye, the PT decided it might not be so necessary to see him on his walker after all. Once he new he had dodged that bullet....he was fine. Not another problem from him. So much for a non-verbal child not getting their point across.
As I said though....in many cases David is where he was a year ago, but in some....he still has a way to go. In my head, I thought Dr. K would look at him and say....we will take out the plates and then go from there. This was my plan anyway. I was wrong. How unusual. After looking at David she said that surgery will happen when his knees are straight. While his knees are almost there....they aren't quite there yet and removing the plates sooner would defeat their purpose. She said they will likely be straight once he has another growth spurt. Another appointment has been scheduled for October to check them again, but if he has a growth spurt.....I need to call to get him in sooner. Until then she wants us pushing David as far as we can. Except for stair climbing....she wants him off his knees and moving on his tushy, or with his walker or wheelchair. Yes....she wants him to learn to love his walker again, so I will dawn the armor (you too Melanie and Niki) and we are going to have to get him used to it all over again. To help this along....his old leg orthotics which had grown much too small were stretched so he could wear them while the new ones were being made....and they will have additions, which I am sure his school PT is going to be happy about.
In the past I have been unhappy with school PT from time to time and I have made no bones about it. However, I have to hand it to his current PT (Melanie) and also his para (Niki). I will say that physically David is back where he is primarily because of these two women. If I haven't said thank you.....THANK YOU! Working so closely and diligently with him also means they get to take a lot of his fighting back unhappy moments, but because of this....they ALSO know without a doubt what works for David and what doesn't. When he is fighting....there is a problem. So that I would have the big picture, the picture even I don't see on a daily basis because he is at school.....they took pictures of where his old orthotics were rubbing on his legs and feet and how his feet looked after wearing them for a period of time. This was unbelievably helpful to the orthotics crew at Shriners and they stated that they wished this happened more often. Melanie also sent a letter to the Shriners PT stating what she had seen with David and what she felt he needed. Both the Shriners PT and Dr. K read the letter. They didn't necessarily agree with what Melanie said feeling that it might put too much stress on his knees but I didn't agree with them. I know....where is my PT/MD degree? My thinking though was that Melanie sees him far more than they do and I trust Melanie. I don't think she would suggest anything that might cause knee or other issues. I think she knows that this would help him....so I persisted and I told them why. Afterwards they both agreed that it "might" help....so off we went to get fitted with a belt with adjustable straps running down the legs that helps to pull Davids hips in a bit while separating his feet some. Even the ortho people questioned doing this but after the straps were in place....everyone admitted that at least the left hip and foot looked better. The right one remains a problem.
What I learned about Davids right hip and foot is part of the continuing saga that unfolds each time we go. Davids left hip, knee and leg are doing great and as I said....I think this new belt and straps are going to make that progress even further. However, his right foot that I have been so worried about is not his foot at all. It is the hip. When David had surgery last year....they plated his left hip but not his right. At the time, that was the worst hip and they were hoping that correcting it would be enough but now the right is having its own issues. So...when he goes in to have the plates removed they will also go in and plate his right hip. This should then bring both hips up to speed and move things forward much more rapidly. Fingers crossed. Yes...this makes the next surgery and bit more intensive but still not as harrowing (to me anyway) as the last.
We also have the issue of his spine. David has overtime developed a bit of a hump in his back. In October they did x-rays of this and then again yesterday. They compared the two and there has been no new curving but..... it will progress. They ask me if he leans all the time. Yes...he does at times but he can also sit straight as a string if he wants to. This is probably why his hump has not increased much. For now...there is nothing they can do about his spine. A brace they feel would have to be so tight that it would break down his skin and also make it difficult for him to breath. No thanks....we have enough issues. So instead....for a couple of more years we work on his core strength and make him sit as straight as possible at all times. Then when he is about 15 or 16 he will have spine surgery to correct his spine. Yeah I know.....another surgery.
All in all....Dr. K and the Shriners staff were pleased with what they saw. Apparently nothing going on is unexpected and I have grown to love Dr. K's direct attitude. I know if I ask a question....regardless whether I like the answer or not, she will pull no punches and give me an honest and direct answer. Sometimes those answers have stung a bit, but other times like yesterday.....this is immensely comforting. When I asked about his spine she said it WILL get worse. No beating around the bush, no hedging just a flat out definite. HOWEVER.....surgery WILL make it better. It can't fix the hump already started....but it can stop further curving! YAY! I take that as a win.
As I said....I plan these trips to the second but this trip was not to be planned by my hands apparently. My plan to leave home at noon was decimated before we got started. I left the walker at school and hand to turn around and pick it up. I forgot to refill a prescription that David needed for the trip. Had to stop and do that and wait to pick it up. It was after 1 p.m. before the trip ever even began. It turned out perfect though as we missed traffic in Kansas City and pulled into Columbia, MO........ where my aunt and uncle live and we stay over night on these trips...... at 5:30 p.m. It was a beautiful thing.
The return trip home had me a little unnerved though. Since David's appointment was at 9 a.m., I was hoping to be on the road no later than noon as I was driving straight through to home. As sometimes happens though....Dr. K was caught in an emergency and we didn't get to see her until after 1 p.m. which didn't get us out of there until after 3 p.m. There were storms predicted for our drive home and it was already beginning to rain in St. Louis. My brain was shot and I couldn't even mentally figure out times we would hit certain places.....so I just drove. We missed almost all major traffic and when we did hit the storms.....it was by Emporia where the traffic was almost non-existent. I was thankful, grateful and so tired when this trip was its end. I would say over all....it was a great 30 hours.
In case you don't know Shriners, it is a place of unending miracles. Everyday kids come in there with life affecting issues and everyday kids come out with new abilities and new possibilities. Through Shriners....David is a miracle in the process. Even with the occasional hiccup in the road.....he is progressing and with the combination of the amazing Shriners staff, Davids school staff and Davids abounding strength and fortitude.....I really believe that someday soon.....David will walk!
****If you have a child or know of a child with orthopedic issues, cleft palate, neurological or burn issues please contact a Shriner or contact the Shrine Temple nearest you. They not only can but they will help you to change a child's life. Here are a list of Shrine Temples through out the United States.
