It’s been a tough week.
Nik is ill again…hopefully not anything that will result in a stay in the hospital. It’s the upper respiratory gunk that has been going around. It has been building up and then just knocked the stuffing out of him on Thursday afternoon. It’s trying to work its way into his lungs and we are fighting it tooth and nail with homeopathy (which we use as a family anyway, not out of biomed desperation to “cure” anything!) and increasing his breathing treatments. Today, anyway, it feels like “it” might be getting the upper hand.
The toughest part —the unknown, if you will —is that Nik’s immune system isn’t functioning properly at this point. Yeah, we just found THAT out this week, too. It’s too early to know exactly what the situation is except that he’s not making certain antibodies and needs to be super careful about illness. Actually, the doctor we spoke with on Wednesday afternoon told us “be hyper-vigilant.” Swell. Another thing to add to the growing list of parental concerns, eh? He also told us that if Nik gets sick he needs to be on antibiotics to protect him from any secondary infections.
Too late…Nik not only has this “gunk” but he’s also started to show signs of a skin infection at his feeding tube site. Sigh…we started the antibiotics last night.
So, yes, the hammer blow seems imminent and Niksdad and I have been talking about the possibilities of treatment if Nik really IS immunodeficient. Of course, I pray that this is just a phase his body will outgrow, but my gut (which has seldom been wrong where Nik is concerned) tells me that we are about to embark on yet another roller coaster in this Dutch Wonderland. While it isn’t going to be a “boy in the bubble” sort of situation, it could mean monthly trips to the hospital for IVGR (intravenous gamma globulin replacement) to give Nik the necessary antibodies to help him fight infections and illness. As it is, he’s been stuck so many times in his short life that he’s got more scars than veins (so it seems sometimes) and the trauma of blood draws or IV’s usually takes him several days to recover from.
On Wednesday, we finally got the written report from the developmental pediatrician. She strongly recommends the state autism program as his best educational placement. Not a surprise for us but still tough to see on paper. It seems so much more defining —if that makes any sense. As Niksdad and I read and digested the report (a process which is continuing even now!), it became evident that Nik’s current school may not be the best place for him after all. That means potentially changing schools to the school I had some reservations about.
Of course, I have great trepidation about making such a drastic change —whether into the autism program at Nik’s current school or to another school entirely. I worry that the change will be so dramatic for Nik that he will regress and have even greater difficulty coping that it could be weeks or months just to regain ground to where he is now. He’s been making some really nice gains lately in the area of awareness of other people and actually initiating interactions; I cringe at the thought of losing that.
Of course, if the change is necessary —and it seems likely that it is —Niksdad and I agree that it’s probably best to make a clean break of it and go to a new school. At least there wouldn’t be the familiarity of place and routine to frustrate Nik. By that I mean if he stays at his current school, his classroom would be at the opposite end of the hall, he wouldn’t have ANY of the same teachers or paraprofessionals but he would still see them every day. (It is a small school and they all know each other.) As it is, Nik has a complete breakdown if I even have to turn around for something once we’ve started to walk out the door at the end of the school day
The idea of changing schools is tough for different reasons which I have already mentioned here. Still, I know that if Nik had some life-threatening physical ailment which could only be treated surgically I would not hesitate to have the operation. Somehow, this is so much more difficult for me to deal with. Is it that I can’t see further than the next few months down the road and so I have no idea what is best for Nik’s longer term future? Likely the case.
So, here I sit today —a sunny, beautiful spring day —wanting nothing more than to take my child to the park and feel “normal” for a bit. Instead, I have a sick child who is too sick to go out but not so sick that he’s not totally bored being indoors, Niksdad is off taking a professional course for the entire day, and I have a raging sinus headache myself. I have not the benefit of knowing thing one about ABA, Floortime, RDI —or any of the other wonderful things I am just starting to read about — to help me in connecting with my child and drawing him out or going into his world or making any kind of connection beyond touch and the aching love in my heart.
And in the midst of it all, I pray for the patience of Job, the strength of Hercules, and the wisdom of Solomon to guide me in knowing what to do to help my child.
Like I said…it’s been a tough week.