Monday, December 29, 2014
Some days, LOVE takes my breath away…We feel deeply grateful to have love in our lives. Somehow, I feel living with chronic illness makes love oh so much richer. I have not written much lately, I have been deep in reflection and realization…living life and appreciating its gifts.
Our family lives in constant hope. Hope that we will see gains and improvement. In many ways we are constantly pushing forward with hope as our shield. And when we dare to lower that shield, we still hold hope in our hearts; because with hope, we grow with the possibilities. If we didn’t believe in possibilities, how could we endure?
And yet, I must acknowledge our reality…everything we do, we plan, we celebrate…we do with much balance; for we know that there is a cost. I think this is the most remarkable strength that Parker has, but with that balancing act, he has to decide what to say yes to and what he will do to make his “yes” a reality. Let me give you a for instance…Parker wanted nothing more than to spend time with one of his cousins who was home for the holidays. But in order to do so, he literally slept all day so that he could see him in the evening. He has to bank his energy, power up in a sense, so that he can sit up in the evening to play games at a table. He knows his capacity and he must allow for it accordingly.
Much has happened since I last updated and once again, we are processing our choices and next steps. The pseudo tumor and papilledema is still there but improved and holding stable. He is still getting treatment. We are hopeful because his vision is better.
JA has been unkind to Parker's mouth...he had the last of 8 baby teeth extracted. Now we wait for them to start coming in before going back to the orthodontist. I am a little afraid to see the next bill with invisaline.
After winter break, we need to set up an appointment with the orthopedic doc to talk about what we are going to do about Parker’s left ankle. And recently, his pulmonology test showed that he needs a bit more pressure to help him breathe at night but that was easily amended on his bi-pap machine. Finally, he is going to need to start gait training in physical therapy. However, now that he is “aware” that his walking is out of whack, he is paying more attention to walking.
On most days, Parker is walking better and his doc would be so happy to see him swinging his arms in the halls of his school. See he had to learn to “walk correctly”. He is making school about 50-60% of the week and we are so grateful that his teachers are working with him. This is the hugest success ever for him and incredibly draining. He is beginning to make new friends at school. For Michael and I, this is the most joyful thing we have experienced in a very long time. It was so incredibly hard to see his friends continue on to the 10th grade and for him to re-enter school after taking a year off for his health and go back into the 9th.
The coolest thing happened last week. Parker had one of his friends over for a few of hours. That alone was the highlight of his break…but when the mom came to pick him up, she looked at Parker and noticed how much shorter he was than her son. She asked if they were in the same grade. Of course, they were not anymore because his friend went on to 10th and he was in 9th…I said it was due to medical that he was held back but they are the same age, thinking she must know about Parker’s JA…but she looked confused. I said, oh, I am sure your son can catch you up to speed when you get home. But in that moment, I was completely overjoyed…I wanted to yell…”Do you know you have the coolest son ever! Do you know that he is the definition of a true friend? Do you know that he sees my son for the cool kid that he is and the fact that you don’t even know that my son has major health issues is the best gift I could have received this year?!” I knew that this friend of Parker’s was pretty amazing…but I love this mom for raising her boy to see “people”.
So we did try the growth hormone for Parker. It was a daily shot and with each day he injected it, the worse and worse his JA got. He got rashes, swelling, fever, and intense pain. By day six, it was so incredible that we were advised to stop it. Many asked if he really needed it anyway…well, yes…yes he does…his labs show he is not making growth hormone and he is not going into puberty. His levels are whacked. So yes, he needs it. We never make medication decisions lightly. We weigh the pros and cons and then try to make the best choices with much prayer for where he is at in this moment in time. We have suspended the growth hormone and had to take Parker in for an infusion and even that was tricky because we didn’t want to make his pseudo tumor and papilledema worsen. Also, with this last flare, his adrenal glands went wacky again. So, once again, we had to increase the hydrocortisone. I am happy to report, that after 3 weeks of intense pain, Parker seems to be on the down-side of the flare. Now he seems to have picked up a bit of a cold though…he got his infusion of his immunoglobulin today and so we are hoping that helps.
The pain management doc didn’t really like this last flare at all. He is pushing us a bit to proceed with the nerve ablations that we have been putting off in his neck. We decided to wait because Parker needed a true “winter break” with NO medical appointments. The doc also talked to us about a new procedure that he really thinks will help Parker. It involves a remote control battery that can be up to 3 feet away that Parker would use when in pain. We are still processing that option, however, Parker is quite intrigued.
We had special guests for Christmas this year. Michael’s cousin and her husband came to Naples for the month of December, so we had them over for Christmas. This was our first time meeting. It was so fun to listen to them reminiscing about their childhood. She even made some of grandma’s cookies. It was all very sweet to witness. But the most incredible thing happened…her husband shared that he works for a very large pharmaceutical company as a biochemical researcher. Here I was meeting this delightful man who was super sweet AND an incredible wealth of information. We had quite the conversation about biologic drugs, immunology and autoimmune diseases. I got such an education and he knew all the drugs that Parker has been on and how they work. It was such a great discussion because this is so hard to explain to others who are not immersed in this vocabulary. I was so thankful to have time with him and his brilliant mind. He also talked quite a bit to Logan about going into medicine. It was one of those moments in time when I felt like all was right…in balance…and we were all exactly where we were supposed to be.
This life we lead is with much balance, hope, and prayer. We never know what is around the corner. We can only live in today’s moments and be joyful for the gift of love that surrounds us.