“Christmas, weddings, funerals, graduations, retirements, and births are like speed bumps in life; we slow down, look around, think about our lives, and then once over the bump, we speed up to our usual pace. ~ Allen Lagarbo
It’s been a very full week what with Nik’s multidisciplinary evaluation by the developmental pediatrics team on Wednesday morning, followed by an unplanned visit to the GI clinic to have his g-tube changed. Don’t ask me how but Nik’s actual tube —the part that goes into his stomach and to which I attach an extension tube for each meal —broke. Uh huh. Literally came unglued. But I’m getting ahead of myself…
Oh tidings of comfort and joy,
Comfort and joy!
Oh tidings of comfort and joy!
God Rest Ye Merry Gentlemen (author unknown)
Tuesday morning was our last play group until after New Year’s; it was a warm and fuzzy morning in which Nik played and laughed and made a Christmas ornament which moved me to tears. Well, I suppose I should say he lent his assistance (cooperation?) to the process. The end result is something that only a parent or grandparent would ever appreciate and think was worth ten times more than any gold-plated la-di-dah from a swanky store. But it is incredibly special to me.
The herculean effort I know it took for Nik to allow his hands and foot to be traced —the sensory processing, the cooperation and sitting still — along with the monumental feat of Miss D actually getting a picture of Nik (almost) sitting still? Let’s just say the heavens must have lent a little help in this case.
I cried not only for the fact that my son helped make it, or that Miss D and Miss T are so thoughtful as to have even come up with the idea in the first place. No, I cried because it reminded me of how tiny Nik was when he was born; he was so tiny and in such distress that we never got his footprints on his hospital birth certificate. The closest thing we have is a set of footprints taken when he was one month old. The prints are still minuscule but they aren’t the same. Somehow the hand and footprints done Tuesday represent a birth of sorts and I’m happy to have something to mark the passage.
***********************************************************************************
“Christmas is a necessity. There has to be at least one day of the year to
remind us that we’re here for something else besides ourselves.”
~ Eric Sevareid
(1912-1992), American newscaster.
Wednesday was the antithesis to Tuesday’s warm fuzzies. Nik’s evaluation didn’t go as well as I had hoped. The team was wonderful and I like and respect each of the professionals., but Nik was simply all over the place and almost completely unable to maintain any sort of focus for more than a few seconds at a time. Nik’s balance was really off kilter, he didn’t cooperate even when I sang the transition or cue-songs we usually use, and Nik didn’t respond to his name at all. The door perseveration was working overtime and Nik kept trying to run out into the hallway —clad only in a shirt and his pull-up diaper!
Each member of the team spent some one-on-one time with Nik and then talked with me at length about what I hoped to have happen as a result of the evaluation. I suppose from that standpoint, the fact that I wanted them to recommend an increase in Nik’s therapies, we may have achieved one of our objectives; their report will be finished early next week and then the developmental pediatrician will call us to discuss it with us. Until then it’s a waiting game.
The hardest part for me was watching Nik struggle so badly. I realize now that he had not had sufficient time to acclimate to the environment. Nor had I taken the time to do any brushing, joint compression, or firm pressure and rocking —all of which I know helps Nik calm and center a bit more. Hindsight being what it is, I can see now that I should have simply asked the team for a few minutes to do that before they started. The lesson here is for me to stay focused on Nik’s needs and not worry about the other people; they’ll take care of themselves just fine.
By the time the team was finished, it had started to snow and Nik and I still had a little more than two hours to wait until his afternoon appointment with the advanced practice nurse in the GI clinic. It was not part of the original plan to have Nik’s g-tube changed but it broke on Tuesday! I didn’t think it was even possible —but this is Nik we’re talking about. We did stop to see if she could see Nik sooner but the part she needed hadn’t arrived yet; she expected it just after noon. So off we went, dashing through the snow, to the nearby mall to visit Santa.
My first clue that Nik wasn’t feeling well should have been in his refusal to walk more than a few steps at a time. I finally ended up carrying all 32 pounds of him, along with our coats, nearly the entire length of the mall and back—having missed the fact that Santa was actually tucked away in an alcove near the center of the mall. By the time we got to the Clauses, Nik and I were both spent. It pretty much shows in Nik’s face in the photo.
We returned to the hospital and managed to get Nik’s tube changed earlier than scheduled. Yay! Someone remind me next time to take a change of clothes for Nik; apparently he hadn’t finished digesting his breakfast from several hours before and it got more than a bit messy. Poor little guy had to suffer insult on top of injury when he came home in a hospital gown instead of his big boy clothes.
***********************************************************************************
Thursday was pretty low key —if you don’t count the faucet which began running from his little nose, followed by the coughing, the facial rash, and finally the fever. All this wrapped up in a pretty package of multiple episodes of unexplained pain which has morphed yet again into something slightly different and slightly more intense than it was before. We’d actually gone a few days without any significant episodes so I guess we were due. And, I’m finally over my tracheitis and Niksdad is healthy, so I guess it was Nik’s turn again.
***********************************************************************************
“Christmas gift suggestions: To your enemy, forgiveness. To an opponent,
tolerance. To a friend, your heart. To a customer, service. To all, charity. To
every child, a good example. To yourself, respect.” ~ Oren Arnold
Yesterday was one of a few bright spots in the week as we saw the good Doctor Mary. In spite of not feeling well, Nik was very good for Doctor Mary. Except for “the snots,” he actually got a clean bill of health —and two shots which we weren’t expecting —the Chicken Pox vaccine and a Polio booster. We got off the hook for the MMR and DTaP shots as Nik has had both of those —albeit before his fourth birthday— as part of some immunology testing a few months back. Since he’s not currently in school we can let those shots slide for a while. Whew! Fortunately, Nik has (knock wood!) never had an adverse reaction to any of his shots.
This was probably the longest appointment we’ve ever had with any doctor and it was incredible. Both Niksdad and I really, really like Doctor Mary; she’s very personable and has a great “bedside manner.” She’s also wise enough to know her limitations and recognizes when a change in tactic is in order. It’s disappointing —yet oddly reassuring— that the “fabulously brilliant neurologist” never returned her calls either. We are seeing the new neurologist on the 30th of this month; Doctor Mary says she has met him and has also heard lots of good stuff from some of her patients’ parents about how approachable and accessible he is. I am encouraged.
We also got the inside scoop —highly favorable— about the diagnostician we are seeing on the 21st. Doctor Mary knows him personally and told us he is incredibly thorough and thoughtful and open-minded. Niksdad and I are eager to meet him. She warned us that he doesn’t say a lot; he listens and processes and ruminates. Sounds just like Dr. House —without the drug habit and the surly “everybody lies” attitude. Which, I must confess, I think is very sexy and entertaining on TV. But when it comes to my kid? NOT A CHANCE IN HELL.
We’re still investigating the issue of intermittent increases in intracranial pressure —including one highly unusual potential cause which was brought to my attention by a reader who emailed me with some very useful information. We’ve gotten used to having some of our ideas and theories dismissed by so many doctors —often to discover that we were, in fact, on the right track if not necessarily entirely correct— that it is refreshing to find Doctor Mary listening and asking for our opinions. As she acknowledged yesterday, some of the things we’re wondering about may seem highly unlikely. But all those rare conditions which something like six people in the world have? Well, someone’s got them so it is possible. We just want to rule out every possible cause before we simply accept that Nik’s recurring and increasing pain is behavioral or something we can’t fix. After seeing the video of some of Nik’s more recent episodes, Doctor Mary agrees that there has to be a physiological root. Let’s hope the diagnostician can unearth those roots.
So, I guess it’s really been a mixed bag around here this week. In spite of the illness and trips to the hospital in the snow, I’ve managed to get some holiday baking and candy making done —in those brief windows between Nik’s bedtime and mine, while Niksdad studies for his exams next week. That has helped to provide me with some creative outlet and a bit of zen feeling from the actions of cooking which have always soothed me. I’ve made literally dozens and dozens of cookies —of the chocolate and nut, chocolate and butterscotch, and mint chocolate variety— and my “famous” (ha ha) chocolate covered almond clusters. I’ve ventured into new territory and made some yummy pumpkin-cranberry mini loaves and star-shaped muffins. Today, I’m actually going to make my easiest and most favorite holiday treat to make —peppermint bark. If Nik is having a good day, I may even make my microwave toffee…
Then, I will divvy it up, package it, and write my holiday letters to mail to the hospitals where Nik spent so much of his first year. Though we no longer see them, the doctors and nurses, social workers and chaplains are firmly woven into the fabric of our family. To not send them something would be like forgetting to give my mother a gift!
Friendship is a precious gift to give at Christmas time. A Cherished gift, a treasured gift that lasts through all time. ~ Unknown
Read Full Post »
