Without a Crystal Ball

Our Journey through Chronic Illness & Autism

I’m so sorry for the long delay in getting a post up to date. Here is something you will learn about me, I do everything in spurts. I read 5 books in a month and then don’t read for a year. It’s just how I’m programmed. This break was not because I didn’t have things to say, but more I was caring for a really sick little boy. Von and a few others at daycare contracted RSV. RSV for most kids is pretty mild, and most never have many symptoms other than a simple cold. However, Von was a preemie on oxygen, spent time on a ventilator, and now he has asthma as a result. For us, RSV was terrifying.

Von has always been a labored breather, and it wasn’t until recently that it’s really proven to affect him. He’s had probably a chest cold or ear infection every other week since August. Finally his pediatrician stepped in and said we needed to start treating it more aggressively. Von started Pulmicort, Albuterol and prednisone in emergency. We are watching to see how this will help our little guy. He’s been so miserable for the past few weeks. His little voice is hoarse, he is still laboring and tugging when he breathes, and he’s more tired than normal. He’s waking up a lot in the middle of the night from coughing or having too much snot in his nose. It’s made for a really exhausting few weeks for me. Von does not allow anyone other than me to help him at night. This is partially my fault since I’ve always been his primary evening care taker, but is also because Von is still nursing. So he wakes up, and in order to fall to sleep or calm down he wants to nurse. Nursing has been a wonderful bonding experience for us, but after 16 months of it I’m beginning to get drained of it. My goal is to get to 24 months. So let’s hope I can hang in there long enough! Von spent a week out of daycare, and finally returned on Tuesdays of this week. This is the same week he is also transitioning to the toddler room at daycare. This is so incredibly bittersweet for me. I’m excited to watch him grow, excited about the reduced costs, but so sad that he’s no longer that tiny little baby. We also have a whole new team of teachers to teach the details of managing Adrenal Insufficiency. That is nerve wracking in and of itself. However, the director, assistant director and curriculum director are all queued in to Von and know his needs. So the transition should hopefully go smoothly.

Von also had his first appointment with Early Childhood Intervention today. Today was the assessment portion. This was absolutely nerve wracking for me. I was an early walker and talker, and to watch him struggle is very difficult. However, the therapists both said while they witnessed some delays, they also saw some very encouraging behaviors. We have one more assessment, and at this point they aren’t even sure he will need speech or physical therapy. I’m going to be cautiously optimistic that we can help him ourselves, but if he qualifies for assistance, I’ll be ok with that too. I learned some really valuable things today about how to help his communication along. I also had to admit to them, almost with a tail between my legs, that much of the cognitive development has gone by the wayside because we’ve been so focused on keeping him healthy. They told me they expect with the amount of health issues he has had to be delayed, but they aren’t certain how delayed he is. I’m hopeful that they can continue offer me guidance on how to bring his cognitive skills up to speed.

Tomorrow is our appointment at Children’s Ear Nose and Throat. We are seeing Dr. Tibisar, who happens to be recommended to us through our friends from the NICU. Tomorrow Von will have his hearing screened, and he will have his consult for tubes. He’s had 5 ear infections since August. I’m hopeful the tubes can go in pretty soon. With tubes and asthma treatment, I’m hopeful we can get him on the path to a more healthy life.

I hope to get more in to the INs and OUTS of his condition, but I’m hoping you are starting to see how complicated our little one is. We call him a complicated case. 🙂 He has a lot going on, but somehow he is managing to keep on going, and I’m managing to stay organized…which is not my strong suit.

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