Slacker Update

Post date: Jul 23, 2013 6:08:56 AM

I can't believe it's been a year and a half since I last posted an update. I am a total slacker. The only reason I am even typing away now is that I've shared this link with a couple of people who plan to share it with more people and figured I really should put something new out here.

And here's how bad a slacker I really am - I'm not really posting an update because 1) It's really late and I'm super tired, 2) Eighteen months worth of updates is rather daunting a task to take up right this instance, and 3) I'm afraid the baby might wake up and cry and then he'd wake up hubby who doesn't need to be woken up because he is still recovering from a cold and... What? Did I say baby? Oh, yeah. I guess that's one of the updates that never got posted. We have a new baby.

Okay. Maybe I should rewind and post an update after all. Let's see. The last post was in February of 2012, right after I withdrew Connor from the last week of his intensive feeding program. I guess I can recap from there:

February 2012- We see Connor's ophthalmologist because he was refusing to wear his glasses and thought maybe he just needed a new prescription. The eye doctor was concerned enough that he schedules Connor two days later to be put under anesthesia for a more thorough exam. It's a big deal to put Connor under anesthesia so if a procedure is absolutely needed, we call up all his many specialists to bundle any other tests together. We end up also doing a spinal tap to test to check his folate levels - something his geneticist had been wanting. The anesthesiologist insisted on having us checked in overnight; Connor's crazy blood sugars unnerved him, I think, and he wanted Connor monitored in the hospital overnight before the early morning procedure. The test results: not good but could have been worse. I think the doctors tell us there's always worse to try to make us feel better. It doesn't always work. Connor did not have cataracts or glaucoma. He did have edema and haziness, band keratopathy I was told, in both eyes. Again I heard the all-too-familiar words, "there's nothing we can do." This time in regards to preventing the clouding of his vision. If it got severe enough then surgery was an option along with the risks that entails. We start eye drops and have been patching his right eye every day for several hours to strengthen his left eye for a condition called amblyopia since he was two and a half. The spinal tap confirms that he had cerebral folate deficiency which affects his brain functions.

March 2012 - Honestly, I don't remember what happened that month, Spring Break because that always happens in March and time spent seeking ways to most efficiently add in new meds to his routine. We did a late birthday party for Ian at Great Wolf Lodge. We had to move it from February to March for some reason I don't remember. I know, his birthday is in January! :) What else happened in March?... I did find a feeding therapist for Connor who comes to our house twice a week. We love that the therapy is in our home because we don't have to haul Connor off to some place where there may be germs waiting, not to mention the driving and waiting time that our schedule doesn't really allow.

April 2012 - We add Physical Therapy and Occupational Therapy, each twice a week to Connor's calendar. Between six therapy sessions weekly, school and doctors' appointments, his schedule gets pretty full.

May 2012 - This was a memorable month. Connor is given the MMR shot. It is one of the few vaccinations that require live but weakened viruses be injected into the body. We debated at length prior to moving forward with his MMR shot. His pediatrician consulted with immunology specialists and Connor's other doctors. They agreed that the benefit of having the MMR vaccination outweighed the risk of side effects. Up to this point, Connor had done well after his vaccinations, but the MMR proved different. Within days of the shot, he was running a fever; his blood cell counts were down. By the end of the month, he was no longer walking. For several weeks he did little more than sleep or sit on the sofa and watch his favorite TV shows. He complained of leg pains and cried that he was tired. My niece had her engagement party and we came to celebrate with family. She asked Connor to be the ring bearer. I had to tell her that I didn't think he'd be able to walk down the aisle.

June 2012 - We celebrated Connor's fourth birthday while vacationing with my sisters and their families. Connor and Ian love spending time with their cousins!

We returned home to get a brain MRI for Connor, more labs and a bone marrow aspirate. This time we refuse to be admitted the night before. Well maybe "refuse" is too strong a word. How about "strongly advocate" for not spending the night? Turns out we can manage his glucose better at home because we are constantly watching and adjusting. Hospital protocol is too strict and waiting to call the nurse who then calls the doctor who then orders a modification that the nurse can then administer takes far too long to be effective for his very unstable glucose. Test results: the MRI confirmed that there was neurological damage.

(Sorry, to be continued later. Baby is awake and making his needs known loudly!)