Slacker Update - Part 2

Post date: Jul 26, 2013 7:28:41 PM

Sorry about ending the last post so abruptly. I had to dash off when the baby started crying before he woke anyone up. So here I am again trying to finish my update and get to present day.

Let's see...

June 2012 - MRI, blah blah, neurological damage, blah blah... The MRI results supported what we were observing and probably contributing to his muscle weakness, developmental delay and other memory and cognitive issues. Curiously enough (at least to us), while he may struggle to identify colors, remember names or count to three, he will remind us of the time he sang at his cousins' house months after the event.

July 2012 - Connor is still not walking but he is moving about some - scooting on the floor and crawling a little although the crawling hurts him more. He continues to be an entertainer and is always ready with a joke and laugh. By now we know we are expecting another baby due in early February.

August 2012 - We have a massive influx of visitors! A friend of ours is marrying another friend from our college days and we had a grand time catching up with people we hadn't seen in years. We take this opportunity to throw a magic-themed birthday party for Connor (yes, two months late!) He is so excited about all the attention that he not only walks on his own but even dances at the wedding! It was magical indeed. However, all the exertion must have been too much because he is sick all through the latter half of the month and back to scooting on the floor.

September 2012 - We travel to celebrate my niece's wedding. Connor did get to be the ring bearer and rode down the aisle in a wagon pulled by big brother.

A new school year starts and Connor is loving it. He loves the big yellow school bus that picks him up every day, he loves his teachers and classmates, and he loves his Mr. Kinney! Mr. Kinney is the school principal and Connor has a serious man-crush on him. Whenever he catches sight of "his Kinney" he will scream excitedly, waving and grinning.

Connor is taking wobbly but definitely more steps on his own and we are thrilled, but he is still getting sick frequently. Each time he is ill, it takes a very long time for him to recover. While a cold may last a few days for us, it will take him two weeks or more to get better. Since May, his illnesses are taking even longer to bounce back from. We don't like this trend and worry it is a new plateau for him. When he was an infant in the hospital after the diagnosis, the palliative care doctor warned us that we might see a cyclical pattern to his health - that it would go up and down. Each down and then up again might result in a new plateau that was lower than the previous as his health declined. We start to worry about how much time we have left.

With the new baby's arrival approaching we know we won't be able to travel for a while. (We find out it's another boy!) Traveling with Connor takes a huge amount of planning so we usually don't bother or stay very close to home. Still, Connor seems to be getting sick more frequently. Needing to make as many memories as possible for our boys while we can, we decide that it's now or never for a big trip. So in...

October 2012 - We take the boys to Disneyland and California! It was an absolute dream! We meander through Hollywood, visit the San Diego Zoo and were vampires at Legoland in their attempt at a new Guinness World Record of the most vampires in one place. They didn't set a new record but it was fun to be a part of the attempt and Ian and I landed in the front row of the giant group picture. Then we headed to Disneyland for a five day stay.

Our visit to Disneyland was amazing! How did we manage this during a record setting heat wave? That was thanks to some very special people, Sandra and Mickey.

When I was purchasing the park tickets to Disneyland, Sandra the travel agent asked if it was a special event. "There's no special event. We just need to go now." I don't know why it hit me but all of a sudden my throat tightened up and I started to cry. I then had to explain to the bewildered agent how we've learned to live in the present because we never know what the future holds. Unbeknownst to us, she contacted Mickey at Disneyland who arranged some special surprises for us. They truly made the trip magical! Even before we left, Ian and Connor received a letter and pictures from Mickey Mouse himself! Connor loved Cars Land and was thrilled to meet Lightning McQueen! Without the special assistance Mickey and Sandra helped provide, we could have only seen a small fraction of the parks; the heat and wait times would've otherwise been unbearable for Connor. Instead, we were able to see and do so much and still ensure Connor got his daily naps and the rest he needed. THANK YOU, SANDRA and MICKEY!

November 2012 - Back at school and the home routine, I am heavy entering my third trimester of the pregnancy while the cold and flu season are fully in force. We are glad we took our trip in October.

Connor's most recent hearing evaluation show a decline; he may be starting to lose his hearing although test results are still within normal limits. I'm not ready to think about what this means yet so we just plow on with our daily life and endless to-do lists.

Connor catches a cold during the Thanksgiving holiday.

December 2012 - Connor is still sick and misses school for most of the month. He asks Santa for a red ball so he and Santa can play catch. Red, practically the only color he consistently recognizes, is his very most favorite color much to Ian's chagrin since it is his favorite also. He gets a flood of red balls in his Santa bag on Christmas. He asks, "Where's Santa? I need to play catch with him."

A highlight of the day is seeing Connor walk to find most of his gifts without using his walker. (Dad plans a fun scavenger hunt for each of the boys every year.) Ian asked for more challenging clues this year. After an hour of scavenging he states, "Maybe I didn't mean this much." :)

January 2013 - I usher in the new year and my final month of pregnancy by getting really sick. We follow our family protocol of quarantining the sick person from Connor which means Dad gets extra duties on his plate. Connor gets sick anyway but I vehemently state that there's no proof it was from me. After all, he was already sick and has been since November off and on. We recover just in time for our annual trek to Great Wolf Lodge! Connor and Ian have a blast as usual. Being 8 1/2 months pregnant, I don't do much or at least try not to. Baby boy #3 arrives on Ian's 10th birthday! Grayson's addition to our family means our initials now spell M-A-G-I-C, Ian's idea. I'm so lucky to have three gorgeous boys. Connor gets sick again so we continue the quarantine protocol with Grayson, which means Connor doesn't get to visit me in the hospital. Boo.

February 2013 - Connor gets an ear infection, the first of many. This month is doctors' visits month. This month we get to see the cardiologist, endocrinologist, nephrologist, gastroenterologist, neurologist, ophthalmologist, and hematologist. As a bonus due to all of his illnesses and infections, we get to see his pediatrician multiple times too.

We also receive his power wheelchair, an electrical monstrosity that is quite intimidating. Although Connor is able to walk short distances, he is very unstable and does not have the stamina for anything far. We use a stroller to transport him most places but he is getting too big for them. At this point we may need a bigger house just to store all of his medical equipment and supplies. I never thought I'd have a pharmacy/DME in my house!

Whew, I am not going to procrastinate this long before making another update! I still have five months to go!! (Who am I kidding? I am so not going to be able to keep this updated. To prove my point, I'm going to have to end this post here.) ;)