Wednesday, August 1, 2012

No News is Good News


I am back. Apparently I have been shirking my duty about keeping people posted on David. I have had numerous people of late scolding me because I have not been blogging about him. In fact when I went to enroll the kids at school the other day...three quarters of the conversations I had with people were about how David was and why I hadn't been a good blogger of late. Hmmmm! So let me start by apologizing and then remind everyone that no news is good news. Right???? In this case it is.

Summer at the Elam homestead has been busy, somewhat productive and for the most part....uneventful. We got rid of David's hospital bed the end of June (actually the hospital wanted it back). We then moved David back up to his own room and his own bed. It was like an invisible fog was lifted from all of us. I think it was the first time since his surgery that we all sort of felt like we were getting back to some form of normal and that life was not always going to involve pain, therapy and more pain for our little man. We immediately turned the therapy room back into a therapy room adding a small table and bench seats so that David and his para Nikki could work on school stuff when he wasn't  doing PT.

David's summer has been two trips to St. Louis, PT, braces and lots of pool time. He loves his pool time and he has gone from just holding his legs in the pool in a frog position to actually trying to kick them. He was also suppose to have the VNS put in for his seizures, but he would have had to have been out of the pool for a month, so we decided PT trumped seizures until fall. He is now set to have the VNS put in in September. He has done extremely well seizure wise this summer (watch me jinx myself) so I am going to ask before they do surgery to do another EEG on him. I would like to know if maybe the seizures are lessening on their own before I make him undergo yet another round of surgery and anesthetic. At any rate we now have Sept. 13th as a tentative surgery date.

Last week we made a very quick trip to Shriners for Davids check up and also for him to get his AFO's (leg orthotics). I have found that with school starting and still needing to make St. Louis trips that we can leave after school one day and be home by evening the next. That will certainly be better than Z missing several days of school in order to help me take David. At any rate the doctor seemed pleased for the most part at David's post surgery recovery and she said his x-rays looked beautiful. We found that the droopiness of the foot which I have consistently worried about since surgery has really nothing to do with the foot at all and is more about the strength of his hip. Once the muscle and strength are built back up in his hip then the foot will straighten itself out. Since David missed quite a bit of therapy during his broken ankle...he is not a progressed as Dr. Keeler would like to see, but in light of circumstances he is doing well. She is not happy with the amount of PT he is getting from the actual therapist. This summer only 2 visits have been covered (which is not the therapists fault)and Dr. K said she wants him seeing a PT 2 times a week for at least an hour. This is going to bring on problems of availability and what insurance will cover. Hopefully the Rx she wrote will help. She also wrote for him to have a larger walker and a larger wheelchair. I am praying that with script in hand that this all will be covered.

The things she was really pleased with were the fact that David is trying to stand with his walker and weight bear even if it is just for seconds at a time. He has been doing a lot of sitting and standing and I contribute a lot of his success to the fact that the school loaned us a stander for David to stand in 30 minutes a day to help strengthen his legs. Now I would be remiss here if I did not thank some people for their part in all of this. First of all I would like to thank his teacher Sarah for getting the ball rolling on the stander and the school for okaying it. Then I would like to thank his para Nikki, another para Anita and his PT Melanie for spending and entire evening overhauling it so it fit David's current needs. Finally I would like to thank Nikki for all of the time she has dedicated to David this summer. David is not always easy or cooperative when it comes to PT or even just sitting and behaving. Nikki just goes with the flow though and makes the whole situation easier on all of us. David truly trusts and loves her and that is why she makes such a good para. David is a lucky little guy to have such caring people in his life.

At the beginning of summer if you remember....we were having a horrible time with tummy time. David hated it and fought it with a passion on a daily basis. He hated it so much because it stretched those hips and of course was uncomfortable. I am pleased to say that currently tummy time is nowhere near as big a battle as it used to be. Now tummy time usually turns into nap time and he often will stay on his tummy anywhere between 30 min. to an hour. Wow! What a long way we have come.

All in all....everything went well at this appointment. He got his new orthotics, he got some new night braces and they even threw in a snazzy pair of new shoes to go over the orthotics. Everyone for the most part was pleased and gave David the homework of being up and taking steps with his walker before they see him again in at the end of Oct. I am thinking this is very doable.

As always I want to thank the Shriners staff for their kindness and hospitality. The appointment ran like clockwork and the boys and I were on the road by noon. So there you have it. David is moving right along and everything looks good. Once we get a few things adjusted we should be well on our way to a very good recovery and even better future.