So much going on …
First, I am chronically exhausted, I no longer sleep through the night —even when Nik does. I’ve recently had some blood tests to check my thyroid levels; I still need to actually get those results and make an appointment to see my doctor. As a result, I have very little energy —either physical or mental— to sit and think of words to express what’s going on. I’m pretty sure I may need my thyroid medication adjusted.
I went back to the gym today for the first time since Nik was in the hospital. For those of you counting, that’s one hundred days. Ouch. But I made it through a thirty minute elliptical workout —clocking two miles where I once did three. But I’m back in the saddle and that’s what counts.
So much is happening with Nik lately that I may have to simply list things for you!
The potty training is, um, progressing. If by progressing one means he’s peeing and pooping on my floors, refusing to wear a diaper or pull-up to bed —with the most spectacular of tantrums, I might add— and generally letting us know he is D-O-N-E. The catch? We still don’t have a full-access solution for him. We’re ordering one tomorrow through our medical supplier. Then the real fun can begin, yes?
Eating? Pffft. Like an old pro. I have yet to find something the child isn’t willing to at least try. Believe me, I fully appreciate the gift we have in that. Nik’s working on self-feeding skills as well as challenging himself on different textures and quantities. My latest challenge is finding enough foods to fill him up without giving him too many calories! Thank goodness he likes fruits and veggies. And anything with salsa. I kid you not. *shudders*
We’ve recently increased his Neurontin dose to accommodate his increasing weight. We had started at a super low dose so we had plenty of wiggle room. So far, other than some transitional behaviors which we expected, we’re pleased. Overall, I think, it seems to be contributing to some lovely developmental surges.
Nik’s recently begun not only noticing other children at the park or in play group but he’s begun to try to insert himself into their activities. Obviously, he doesn’t have the communication skills to be able to indicate “Hey, I want to play with you!” but he’s trying. The first time I watched him follow a group of children climbing upthe sliding board at the park I wept tears of joy and relief. Niksdad tells me it’s becoming more consistent with each trip to the park, too. His behavior at home is also telling us that Nik really wants to spend more time with others; the change is delightful —and challenging.
We’ve set things in motion to not only get a commode chair for Nik but to also get a new car seat, a new stroller, and a new bed! So much physical growth and change all at once! Yikes. We meet with our medical supplier tomorrow to select specific items and then begin the process of authorizations, letters of medical necessity, etc. Nik has grown so much that he needs things which are not commercially available or, if they are, are not designed to meet his safety and developmental needs.
Nik’s communication efforts continue to soar! Not only is he picking up —or making up— new signs; he’s also following multiple step instructions more and more. I didn’t know it was possible for a nonverbal child to talk back to his mama but —oy vey! —the tone of babble this child uses with me sometimes is amazing. The boundaries are being tested at every turn and we couldn’t be more delighted and frustrated!
Next week we will begin a several week trial of one of the devices from Prentke Romich (the same company which supplies Schuyler’s Big Box of Words, aka Pinkessa). We met with Janet Lehr, the regional consultant for our area, several weeks ago. The trial was nothing short of amazing and it became clear to all of us that the PRC technology would be a good fit for Nik’s learning style. The question on the table now is which device? We’ll start with the Springboard Lite and then try the Vantage Lite. The primary difference is that the SBL doesn’t have text to speech capability which the VL does.
Where Nik is not yet an emergent reader, we’re not sure which device will work best for him. It may be that the SBL is the best device but he might learn so quickly that we’d have to replace it with the VL in less than a year. That’s sort of what my instinct says. But, that’s why we’re doing this multi-week trial, too.
Homeschooling has begin in earnest. Sort of. I’m still pulling together materials and deciding which skills I want to work on with Nik. Just when I think I’ve got it figured out, Nik surprises me. It seems he’s recently learned to identify letters by the sounds they make, too. Um, so much for that first goal. (Wow, I must be a powerful teacher; I think it and he masters it? Ha! If only.)
On the health front, Nik’s recent EEG gave us good news. Nik remains seizure-free and his background wave forms on the look “normal for his age” according to our neurologist. That means the weird eye rolling and facial grimacing we’ve been seeing are not partial seizures. Of course, it doesn’t tell us what the cause is(possibly related to changes in his meds; the symptoms seem to increase in the first week or so of any changes) but we’ll take seizure-free any day!
The MRI last week gave us good news and some potentially bad news. The good news is that there is nothing showing in Nik’s brain that is either degenerative or progressive in nature. No growths of any sort and his cervical spine appears to be stable. He does have a mild cervical fusion at C2-C3 but we already knew that; we needed to make certain it wasn’t impingeing on the actual spinal cord. It is not. Whew.
What does show on the MRI is continued fluid in the mastoid air cells behind Nik’s left ear. This has appeared before and been dismissed by the ENT as “most likely he was fighting off some mild infection at the time fo the MRI.” This time, it’s appears to be slightly more infused when compared to the last MRI. Certainly enough so that our neurologist and pediatrician agree that it needs to be fully investigated by an ENT. We see the ENT on June ninth. If they are unwilling to investigate further, our pediatrician is prepared to refer us to either Johns Hopkins or Children’s Hospital in Philadelphia for further evaluation.
In light of this recent development, we requested copies of allof Nik’s MRI images from the hospital. After we met with the neurologist yesterday and he showed us where to look on the films, I spent some time poring over all the films. While I admit I am not a neurologist or a radiologist so I’m not quite certain what I’m looking at, what I think I see disturbs me. Greatly. Enough that I am going to ask our neurologist to examine the full set of films.
It appears that there has been a continual building of fluid in the mastoid region for more than two years —possibly three. It was barely discernible back in January of 2006; just enough of a small patch that it could be either overlooked because the primary focus was on the brain then. Or it may have been dismissed by a radiologist as evidence of a mild infection and not necessarily worth remarking upon.
One of the challenges is that the films were not all read by the same radiologist and were not ever read as an entire series; they’ve only been compared one at a time —the most current to the most recent —in an effort to determine if there’s any sign of either progressive or regressive injury to Nik’s brain. Thankfully, there is no evidence of such. However, the potential long-term impact if this is left untreated could be permanent or significant hearing impairment.
Going through Nik’s MRI’s —he’s had five in four years —has been a diffcult process for me. They are not “normal”by any stretch of the imagination. The damage sustained by his brain in his extraordinarily rough start in this life is emblazoned on those films in splotches of white “holes” where there should be grey matter and in enlarged perivascular and periventricular spaces. In short, there is clear-cut evidence of permanent damage to certain areas of his brain.
Our neurologist gently answered my hesitant questions yesterday—ones I should have asked years ago but was simply too grateful that my child was alive to even think about the longer term ramifications. The questions about what those holes and patchy areas tell us about Nik.
The truth is, they don’t tell us anything we don’t really already know. Those areas tell us why he has difficulty with motor functions and why he may have some vision problems. Why he may have some longer term speech challenges.
This is a tough pill to swallow right now. I’ve known for years that there was “mild damage” to Nik’s brain but I was able to fool myself into ignoring its existence by not looking at the stark images. If I didn’t look and I didn’t understand those images on the screen, perhaps none of it was real and one day Nik would —miraculously, spontaneously —recover.
It’s like ripping a scab off an old wound. The surrounding tissue has begun to heal and the damage is only on the surface, but the nerves are tender and raw. The pain is none the less searing.
None of this matters a whit to Nik. He simply keeps moving along and making amazing progress. Whether because of our help or in spite of it, he perseveres in the best of all possible ways. No obstacle is insurmountable, no challenge too great and no adventure too grand.
I don’t get the luxury of wallowing in my sadness and self-pity. Nik needs me to put on my big girl panties and keep moving. I must if I’m to keep up with my little dynamo.