No Kidney for Child With Disabilities?

As I sit down to write this I cannot even remember where I first saw this story - I think it may have been on twitter. But once I read this story I could not get it out of my mind.

If you haven't read it yet I would strongly suggest you go and read it now at the following link - Brick Walls. Basically, it's about a little girl with disabilities who's parents were told she would not be approved for a kidney transplant because she is mentally disabled.

As a parent and caregiver to children with a wide variety of disabilities - NLD, ADHD, mild cerebral palsy, mild to moderate developmental delays, possible mood disorder - this is both very sad and very scary.

It is sad to think of a parent having to hear these words. It is sad to think of a beautiful little girl being denied the gift of life simply because she is disabled. It is sad to think of a family hurting because of the decisions callously made by others who think they have the right to decide who has a chance at life and who does not.

And it is scary to think that there are those in the medical profession who would make decisions like these based on these criteria. Because if it can happen to them, can it happen to my kids too? Will they at some point be denied care because of their disabilities? What if the disabilities listed on paper overshadow, in some doctor's mind, the reality of the awesome kids they are in real life?

These are real and important questions that cannot be ignored.

To be totally fair, we have not heard the hospital's side of the story and probably will not. Privacy laws, if nothing else, would keep them from being able to share all the details. However, it is hard for me to understand why there would be a need for the parents of this little girl to make up a story like this.

The good news is that this story is not being ignored and there are a number of other bloggers and other writers who are sharing this story.

Here is a partial list of those articles:

My Worst Fear . . . Is Coming True

Who Deserves a Kidney? CHOP Says No Kidney for Amelia

Hospital: No Kidney Transplant for Girl With Disabilities

Sign Petition to Fight Hospital Denying Transplant to Developmentally Disabled Child

Human Rights, Going Viral, and What Next?

I hope the doctors realize that this story will not go away and rethink their position on this. And I hope that sharing this will help doctors everywhere who have this mindset realize that parents and caretakers of children with disabilities will not take this kind of treatment sitting down.



Michael's Physical Therapy and Speech Evaluations

Today were Michael's evaluations to see if he needs physical therapy and speech therapy.

So after getting everyone up and fed this morning and then taking one child to preschool Michael and I headed across the mountain to Kluge Children's Rehabilitation Center. We stopped on the way and bought a second breakfast at Hardees, which is a rare treat for us. Since our appointments were at 11:00 and 12:30 and there is no place right there to eat I thought we'd both do better with some food before we got there.

Our appointment with the physical therapist was first. Michael was not in the mood at all to cooperate with her. His answer to nearly every request was "No." No he would not stand on one foot, no he would not try to walk on the balance beam. No, no, no. He did move around enough though doing anything except what he was asked to do at the moment that the therapist was able to get most of the information she needed. One thing of concern that she showed me is ankle

clonus in both ankles. While overall he is certainly in the functional range she did feel he would benefit from some physical and occupational therapy. So after the holidays we will be going once a week for those appointments. We will also be given things to do at home. Our initial plan is to do this for eight to twelve weeks and then see what we need to do from there.

We were finished with that appointment around 11:45 and the appointment with the speech therapist was not until 12:30 so we had some time to fill. One thing I love about KCRC is the playroom they have for children to use while waiting. It is full of fun toys, lots of huge windows, and there is often music playing. Sometimes there are volunteers there to do crafts with the kids if they are interested. I meant to take more pictures of the playroom today but Michael was everywhere while we were there and I was busy keeping up with him. But I did a couple of him playing at the kitchen set.

Even though Michael enjoyed the playroom I was really glad when the speech therapist came down early and said she could go ahead with Micheal's appointment. She was really firm with Michael and the evaluation went really well. She was not mean in any way but she made it clear from the beginning that she was in charge. She also gave him little breaks to do what he wanted after he completed what she asked of him.

We were referred for speech articulation concerns but his scores there were in the average range for his age. His understanding of speech fell in the low average range and expressive speech below average for his age. We have the option of starting speech therapy (if insurance will pay for it) or she said she could give us some things to work with him on and let us do it on our own at home. We're thinking at this point we are going to work with him at home and see if we can make some progress.

Having this day completely out of routine really threw Michael for a loop and behavior was a major issue all day. I'm looking forward to a new start tomorrow with a normally scheduled day to help him get back on track. I hope we don't have to deal with this much upheaval every time we go back when weekly therapy starts.

Follow Up Visit with Pediatrician

Yesterday was Michael's follow up visit with the pediatrician. Since Michael's last visit to him we had an evaluation at Kluge Child Rehabilitation Center and a medication change.

I feel like there are small changes in Michael's behavior that make life easier on all of us, but we have a long way to go. Of course I am watching gradual changes and sometimes they are harder for me to see than for someone who has not seen him for a month. Dr. J (as the kids call him) said he saw a big difference and was very pleased. Michael was a lot more cooperative in the office this time than the last time we were there. But when we stopped in the rest room on the way out Michael was everywhere, completely fascinated by the touchless water and paper towel dispensers, running them repeatedly and fighting me when I said it was enough, then turning off the lights in the bathroom on the way out. Then on the way home he threw open the van door. Thankfully we were stopped at a traffic light when he did that, but it scared me anyway. I guess he's going to have to sit out of reach of the door handles from now on. I found myself thinking that I wished Dr. J could see him now and wondering what he would say if he did.

But, I do have to agree that over all we are seeing some gradual changes for the better. Making the decision to go the medication route was hard for me and I pushed it off for a long time, maybe a little longer than I should have. I'm not against using medication if needed but I had to know it was definitely needed. So now we're on 18 mg. of Concerta in the morning and .10mg of Clonidine and 3mg of Melatonin at night. The night time medications are so he (and I) can get some sleep at night. Most nights are much better so far although he did have one night this week that he was awake a large part of the night.

Our next appointments are with speech and physical therapy. Those appointments are on Monday and I'm looking forward to the results of those assessments and any recomendations they can give us.



Michael's KCRC Appointment - Ear Infection, ADHD, and Cerebral Palsy

Back in September during Michael's 5 year physical I brought up some concerns we've having with Michael that I thought we should look into further. Most of the concerns were behavioral - hyperactivity, constant sensory seeking, defiance, poor sleep, constant eating, no impulse control,  etc -  although I also wanted to know if there was a physical cause for some of the behaviors. I also had some questions about his feet and legs, to me they looked like they were not properly developed and he occasionally complains of them hurting although he does have an unusually high pain tolerance. I've seen him calmly take a bee sting, his only reaction being to calmly state "that bee stung me" and he doesn't even flinch for shots.

His pediatrician (who is my favorite pediatrician in the whole wide world) agreed that there was reason for concern and referred us to Kluge Children's Rehabiliation Center for an in-depth evaluation.

Tuesday afternoon was our appointment at Kluge and we left with a diagnosis that I was expecting and a couple that I was not expecting.

The first diagnosis is ADHD. I expected that and have already been working on things at home to manage that along with his medications. While it is time consuming and sometimes energy draining I familiar with ADHD through working with other kids and I'm comfortable working to manage it. She changed his medications, adding Concerta in the morning and Melatonin at night with his Clonidine.

The second diagnosis is temporary and easily treatable. When the Dr. looked in his right ear said he has a "massive ear infection." I knew he was starting with a cold but he had not complained at all of his ear hurting and when Dr. Hensen asked him if it hurt he said it didn't. I asked him again later that evening and he still said it didn't hurt. There's that high pain tolerance again. So he's on antibiotics for the ear infection. Again something I'm familiar with and completely manageable.

The third diagnosis was the one that really surprised me and the one I'm still processing and finding information on. When Dr. Hensen checked his legs and feet the first thing she said was "He has cerebral palsy!" Cerebral palsy had been discussed when he was a baby and we were doing physical therapy to help him become mobile but when he became mobile and really began to make progress in all areas it was dropped and never brought up again. There was never a diagnosis and my understanding was that it was not an issue. So along with the Prader-Willi and the Down Syndrome testing that all came back negative, I thought Cerebral Palsy had been ruled out.

Initially she said the Cerebral Palsy was only in his lower extremities, but when she rechecked his arms she said he did have mild signs there as well. This all knew to me, so I don't know if I have all the terminology correct, but this is my basic understanding of what she was telling me.

So, we are now working on making appointments with the following professionals - physical therapist, occupational therapist, speech therapist, genetecist, pediatric developmental specialist specializing in cerebral palsy. Plus follow up visits with his pedeatrician and the Dr. we saw Tuesday.

She described the cereabral palsy as mild although I'm not sure if the mild referred only to the upper extremities or upper and lower. She also described it as spastic. I guess the upcoming appointments with therapists will help us to understand the true severity and extent and make a plan as to how to manage it.

All through this two hour appointment Michael was very active and fought nearly everything the Dr. tried to do. I love how the staff at Kluge is so understanding and tries to make things as simple as possible. They worked with Michael to get him through everything and even allowed him to play games on the doctors phone.

There is also a nice sized play area for the kids to go to while the adults finish talking about everything and it is often staffed with volunteers who play with and do crafts and stories with the kids.

So, I guess now, we move forward, learning, treating and growing.

One thing I do know is that Michael has been a miracle from God from the beginning. When he was a baby there was little hope from the doctors that even if he survived everything he was going through as a baby - born at 27 weeks gestation - he would ever learn to walk and talk. I believe God will continue to work in his life and that we can trust Him to guide us in every step.

I am interested in any information and experiences anyone else has with Cerebral Palsy and ADHD and the therapies involved, as well as any other advice and tips and stories.