Perseverance

Perseverance - noun - steady persistence in a course of action, a purpose, a state, etc. especially in spite of difficulties, obstacles or discouragement.

Today Little Man once again demonstrated impressive perseverance. This afternoon at the park a whole cluster (yes, that's the technical name for a flock of children ;) ) of kids were playing together. Little Man may not get the intricacies of many forms of play, but running around a playground is just up his alley. At least in spirit.

You should have seen this kid. He was "it" and every kid at the park - yes, even these little tykes in the picture above - could outrun him. Did he give up? NO. Did he cry? NO. He just kept pushing and pushing and trying his hardest. At one point a girl jumped off the equipment right in front of him, but she slipped coming off and landed on the ground. Should be an easy tag. Nope, my precious little guy stopped right there and asked if she was okay before continuing to chase the other kids. He is so very tender and sweet.

At one point Beans came and sat next to me. "Mom, Little Man can't really play tag with the other kids. He runs and tries but even the little ones can go faster than him." He let out a sad sigh.

"It must be hard sometimes being a Little Man, huh." I replied.

"Yeah...but sometimes I go slow and make sure he can tag me so he isn't left behind." Oh little Beans, you sure watch out for this brother of yours.

When we left the park Little Man could hardly walk at all. We had to stop and rest so he could make it back to our stop. You can see on his face just how hard he worked. His was the only red face in the whole group.

My dear sweeties, you have so much tenderness and compassion. You work so hard to get what you want. You have the whole world out there waiting for you, keep up the good work. <3 <3 <3

The Search

When you have a special kiddo with multiple issues but no overall diagnosis it's like being lost in a land without road signs. Sure, you treat each problem that comes along: flat tire - change it, seizures - give them meds, run out of gas - stop at the gas station, delayed milestones - do therapy. When you have a collection of "minor" diagnoses, but nothing that explains it all, or how all these pieces fit together, you're constantly wondering if you should be doing more, if there's a treatment that could make a difference.

All the new information about Little Man this week has reinforced the need to at least keep looking for that big answer. I was talking to a dear friend of mine who is in a similar situation with her own son. When you take your child to different specialists, sometimes its hard for friends and family to understand. "Why do you want something to be wrong with your child? Why are you hoping this test or appointment or whatever gives the big diagnosis?"

The truth of the matter is that no one wants something to be wrong with their child, but sometimes things aren't how they should be. People do not simply pass out or bruise or shake or have trouble learning without a reason. I think most every parent of a special child who has been waiting for an answer is both relieved and disappointed each time that reason eludes them.

On the one hand, you can secretly hope that if they don't find the answer that somehow things will turn out okay and this will have just been a phase. On the other hand, you know that something is wrong and it's much easier to fight the enemy you know, than the one you don't.

Having an answer doesn't necessarily mean having a cure, or even better treatments, but it does give you an idea of what to expect. Finding out your child has something treatable would be amazing, finding out it's something chronic but stable would at least mean your child wasn't going to get worse, and finding out it's something progressive would be absolutely devastating and yet at least you could make decisions appropriately.

The search is a very personal decision, but please understand that if you're not involved in the search for your own loved one, the emotions and choices are felt very deeply and we're all doing the very best we can for our own children with the information available to us right now.

Neurology

Today Little Man saw neurology. It was a fairly productive appointment, though we're still looking for the big answer. The best news is that there were no vascular abnormalities found in his brain the other night. Very good news for an 11 year old indeed! :D One of the things I didn't realize we had to worry about, but now we know.

A few interesting Little Man-isms were added to the list today, though we're not sure what the significance of them yet is. His eyes are always dilated, he's weaker on the left side, and his tremors are no longer just hand tremors but involve his entire arms and sometimes his whole upper body.

There is a lot of concern about his staring spells and also his slurred speech/clumsiness/spacey episodes. These could be more seizures or could have to do with something else, possibly blood pressure? His bruising and vascular system earned him a referral to hematology to further explore what's happening there. He also needs to have regular follow up with neurology in Connecticut - none of this occasional appointment then nothing that he's had a couple times.

Genetics also needs to be involved to see if we can find the root cause of all his issues, and to further explore the connective tissue disorder. Instead of being a cute party trick as we've previously thought, this could actually be serious.

And...just to keep us busy...he needs to restart physical, occupational and speech therapy. I think we've got enough on our plates to keep us busy for a while. They want a lot more extensive testing done in the neuro/hemo/genetics departments. Guess we'll get our crash course at CCMC. They did say that CCMC is a great hospital for neurology though which makes me happy since they'll be so close.

Overall, pretty much more of the same for now. Be cautious, be extremely careful about him becoming dehydrated and be careful in things like baths or activities because we're not sure when he may have a seizure/become unconscious. Really though, he's the same kid he's always been, we just know what to watch for a little more now.