Wheelchairs, Kidneys, and More

We have had several appointments for J over the last month and I am feeling better all the time about getting him taken care of. We feel so blessed to have a good primary care physician, he is endearing himself more and more to us. Helpful and caring.

J will be getting a new wheelchair within the next couple of months, we're thrilled with this! He's had this one for 5.5 years and it's showing its age.

We see the orthopedic doctor soon, to get him braces for his feet again, so he can wear shoes again, so he can stop wearing out his special latex-free socks by crawling SO much. Shoes just don't stay on without the braces.

We saw the ENT and the audiologist a couple of weeks ago. They will do the tubes but think there's more going on with his hearing and speech and want to know why he still needs tubes at this age. They're going to schedule a sleep study (suspected apnea) and do the tubes, during the surgery for the tubes they'll evaluate the adenoids, and look for another structural abnormality that could be causing some of these issues. We'll be excited for him to not have to wear his hearing aid anymore. It's sad when we forget it and on our way to school, he panicks!

After his bad/not so good/really awful/sent-his-mom-into-half-a-coma kidney test reports last month, we were able to get approval to see a pediatric kidney specialist. The pediatrician was hopeful to be able to take care of the issues with perhaps a little help from the specialist over the phone, but the results stated that J's kidney problems are way out of his league. One kidney is doing 30% of the work, and one is doing 70%. This is not good at all. Also the ureters (the tubes between the kidneys and the bladder) are dilated once again. They were dilated a lot when he was smaller, but we got them to go down and thought we had this solved. This is a bad sign as well. We knew that he already had kidney damage from the severe infections that he got during his first couple of years. He actually had surgery to correct kidney reflux on one side several years ago as well. This news was quite a slap in the face because his last 1 or 2 big kidney/bladder tests have been at least satisfactory. We see the urologist next month.

Of all of his issues, we definitely feel that this one is the hardest to deal with, and would not mind him being kept in your prayers.

It is very, very difficult to watch your perfect child (you know what I mean, right? I mean this wonderful, smart, happy, brave little boy that you love more every day), have more health issues than you can count on two hands. He can live without walking. He has a great attitude about that. That's the least of our worries. (But I won't tell you I don't still cry over it.) The kidney stuff just really scares me. They're important!!

We're very grateful to have him and T. They are the light of our lives. I am so happy to be able to give them a gift of a little sister. They act as though I am doing it personally for them! They are so careful around me, J loves to touch my belly, T is always rubbing my back. (She's very good at it!) They are waiting patiently for their new baby. T, if you're reading this, I miss your back-rubs!! I love you!! I love you too, J!