What do I type? What is the update for those that are praying and thinking of our family? I have NO idea what to write and what to say so I am trying to just type so I can get some things off my heart and out of my mind.
Aden has decided that he is going to be a destructive 3 year old… he decided to take the scissors and make a scarecrow out of his drapes. It was hard to not get super upset; I mean he cut holes in his drapes. I think that it was partially because we are working on learning how to cut and partially because a bunch of shows have been talking about making a scarecrow so he wanted to keep the “bad stuff” out of his room. He is trying to give up naps and he is also having issues with a sinus meds, the whole thing is making him mean. He isn’t a mean boy he is sweet and loving and concerned.
We have noticed something about Aden which is breaking our heart… he is starting to really realize that Zach is sick. He is telling us that “Zach is going to have to go to hospital” because he is sleeping a lot. Whenever one of us coughs he begs us to not have to go to the hospital. It took me 30 mins the other day to convince him that I was okay because I was coughing. It is a hard reality knowing that our awesome and loving 3 year old is worried about his brother.
Zach has been having a rough couple of weeks. He has been sleeping a lot and acting like his legs are hurting him. We went to Zach’s neuro appointment the other day and we learned that it is going to be testing time for Zach. We have to do a special MRI of the brain and spine and we have a referral into a new doc ( I am praying that we can get in pretty quickly, this doc is one of the few of his specialty in the country). The Neuro ordered new AFOs for Zach and also told us that PT/OT was very important and that we needed to work on strengthening his legs and the sensory issues that he has on his legs.
It is hard because we are talking him to OT every week and to ST every month and to then we will have PT bimonthly. All three of these of these are being done privately which means that I am going to 3 different locations and in all 3 I can’t take Aden. It is hard on me and on him needless to say that it is hard on Zach. He cries and screams through most of the sessions. I pray that it will get better, on a good day nobody would know that he is sick or having issues but on a bad day, he looks horrible. However, even on those days he still looks like a little boy that can’t be that sick. I can’t explain to people that he is that sick, that he is sleeping 20 hours a day and that he doesn’t have the endurance to do anything but that the doctors don’t know anything, that the tests are normal.
I don’t know what I feel about it all, My head is spinning because a doctor is listening to me and ordering more testing for him… finally and it is spinning because the road that we are on has been hard and bumpy and STRESSFUL.
So the week has been good, we have SMILES and we have lots of hugs and lots of laughs. I will hang on to those because even with all of the “bad things” that Zach goes through, I have finally realized that to Zach they ARE NORMAL~~~