Jim and I both felt like writing updates this month, so please read below for Jim’s version of our summer and my version of life.
Where do I start? It’s easy to gloss over the feelings of the moment when we summarize our days, nights, weeks, etc. But in reality every day seems to throw a seemingly impossible mental or physical challenge our way. Here are the things I thought about and did yesterday. Just a typical day. This is very long… SORRY!
I wake up and watch Nathan have his morning seizures. His seizures (paired with his constant vomiting) still suck. We read and hear about all these different treatments, but with Nathan they have either been tried or seem too far fetched. I’ve been reading about stem cell treatments in places outside the US. Not only are they hundreds of thousands of dollars, but do they work? Could they work? And if they do work, for how long? Do they work to improve his seizures, regenerate parts of his missing brain, improve his eyesight, enable him to walk or talk, fix his GI system? I can find a success story for each scenario, but not one for all of Nathan’s challenges. Do we choose to pursue something like this and sacrifice the money and the time with our other children, our jobs? I’m obsessed with his seizures. I think if we could control them, he would start progressing on his development. Maybe yes and maybe no, but he can’t do anything when he is seizing all day. I know each one is a set-back. There are days that he still has hundreds, but we don’t see them all. How do you handle hundreds of brain set-backs daily?
I think about our friends and acquaintances that have children with other life threatening diseases who pursue any and every treatment constantly in pursuit of a cure. There is a direction, a vision, a purpose to every move they make. We read their blogs and cheer them on for their race for a cure, a better life for their child. I often wonder what the race is for Nathan, there is no prescribed roadmap or known possibility for a cure.
At 9am, I take Nathan to physical therapy where I engage in conversation with other families that have been relentlessly advocating to get their kids into the best school and best programs for their childrens’ physical and cognitive development. In case you are not aware, kids with special needs get to enter the public school system at age 3. As a matter of fact, you don’t really have a choice if you want to continue any early intervention services for your child. So, when Nathan turns 3 in six months, we must be prepared for all of the things we need to ask for, all of the services and educational/therapeutic opportunities that he needs. You may think that is 6 months away, but it takes that long to do anything in our wonderful (sarcasm) system. I’m already behind. These families also talk about taking their kids all over the world for hyperbaric oxygen treatments, intense therasuit therapies, and many others. Again, do they work? For some, yes. And you never know until you try. Should we be doing this? Are we giving him the best chance? Again, what race should we be running?
Nathan needs a medical bed, ramps to get into and out of our house so that we don’t end up with carpal tunnel popping wheelies into the house. I know there is other equipment, but I just haven't had the time to research or start the paperwork/prescription process and the clock is ticking.
Nathan’s eye surgery (for blocked tear ducts) did not work. We must repeat the surgery before pneumonia season starts again. The lady that does the surgery scheduling does not return my phone calls. We don’t have that much time.
At 11am, we see the dietician who tells us that Nathan has lost another pound. Not good news for him, but she is at least happy he did not lose more with all the vomiting. She tells us that he is 5 lbs shy of his recommended weight. I think – I’m glad he does not weigh 5lbs more than he does (as long as he stays healthy).
Nathan’s feeding pump is malfunctioning. Which means I must call Apria again. And they are really miserable to work with!
The receptionist at the endocrinology office berated me for being 2 months late on Nathan’s blood panel (to do a precautionary check for pituitary gland deficiencies). Not only that, but the office refused to cooperate with the neurology office who needs some of the same blood work done. So, after spending 2-3 hours trying to combine the tests, I gave in and decided to subject Nathan to giving twice as much blood just to make it work. The lab has their policies and procedures also. They decided poor little Nathan would have to come back for a 2nd time because they could not draw that much blood from him at one time. Why does Nathan have to suffer because the system is ineffective and each doctor really only cares about their piece of Nathan’s body?
The documents for Nathans’ services renewal were due. Of course, the mail must have lost them (because no one at the Government office could have made a mistake). If we don’t go down to the state welfare office today to re-submit, Nathan will lose his nursing care starting August 1st. Change of plans for the afternoon.
So, when Friday night rolls around and I go to the summer concert series in the park with the kids alone (Jim was playing softball), and some uninformed / insensitive person parks their car in the handicap zone (you know, the zone with cross-hatches that says no-parking) which “saves” the room for a wheelchair ramp, I decide to lose it. This means that I cannot get Nathan back into the van without pulling out into the street (which I do). Later, our friend, Avis, leaves a message on our answering machine that said, “we tracked down security and they gave that car a ticket”. I felt vindicated for one moment - it made me smile. KARMA! I hope it was not anyone reading our blog.
If you get this far, thanks for reading and thinking of Nathan and our family. You are all his cheerleaders on his race for quality of life and for that we thank you.
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