February 15, 2014- A New Year, A New Boy

It has been over 10 weeks since the last update.  We have been busy and I guess as the saying goes, no news is GOOD news!  If someone would have told me even a month ago that Chase would be where he is at today, I would not have believed them.  He is unbelievable.  He is amazing.  He is our little miracle.

After our last trip to the Mayo Clinic at the end of November when we found out the great news that Chase's EEG was clear, he slowly begin actually interacting with us and others.  He had been in his own little clouded world for so long, it was amazing to see him start recognizing us when we picked him up at daycare- even if at first smiles were for only his sister.  The blank look he would get in his eyes slowly started to be replaced by awareness. He started to reach up to be held and cling onto us, rather than feeling like a (very heavy!) wet noodle.  It was a wonderful feeling.  These simple things I never thought about before and took for granted with our daughter, I had wondered when-  if at all - would ever happen with Chase.

Christmas Day 2013

On Christmas we brought Chase back to the Healing Shrine
Tom took him to each day at our church after he got out of
the hospital in September.

For basically 5 months during the time he had infantile spasms and was treated with ACTH, most of Chase's development had been frozen (except the walking - which cannot be explained).  The development slowly started up again in October after the spasms stopped, but around Christmas when Chase was almost 16 months old, the changes started coming fast.  The week of Christmas he finally clapped his hands for the first time, another milestone for which we had been patiently awaiting.  He started being more alert, laughing with and chasing other children at daycare. This was good, this was REALLY good. And then he said "Mum-mum".  Even though it has only been a few times and I don't even know if he is saying "mama", it is the best sound on earth!!  There were many days I truly feared I would never hear that sound come out of his mouth.  Christmas was an exceptionally emotional time for us, realizing what could have happened "80-90 percent of the time" and that we don't even know and never will know how lucky we are to have dodged that bullet.  We visited Chase's local pediatrician in January, the first time she had seen him since he had finished the injections. "He even has the Mayo Clinic excited!" is what she said ecstaticly, noting she had never seen so many exclamation points in a medical report as the most recent one sent to her from the Mayo Clinic.  She was astounded and said she had never seen this excellent outcome.  

Now it is the week of Valentine's Day, and Chase is practically running up to us happily hysterical when we pick him up at daycare.  He will actually sit for a few minutes and look at a book.  He is banging blocks together, and banging everything and anything.  He is a tornado, a typical boy getting into everything he isn't supposed to and more quickly than we can keep up with. He just started waving his hand bye-bye a week ago.  He no longer drinks a bottle on a daily basis (only in a pinch if we can't get his medicine in- which can be stressful) and with a lot of persistence and occupational therapy, he is now feeding himself some finger foods.  It's funny how we have changed from the crazy parents who wouldn't let our first child eat sugar or anything the least bit unhealthy at this age, to feeding Chase a steady diet of hot dogs and M&M's, among other crap.  When you have a kid that would not eat for so long, you are just excited they will eat anything!  When you have a kid who has been through this nightmare and that medical treatment, the worst cold, flu, or hand, foot & mouth disease doesn't make you flinch.  And Chase has had all of these things the past few months and he did not flinch- he has become one tough cookie.

The Early Intervention therapists and daycare teachers have commented that Chase is a completely different boy than he was only 2 months ago.  Although he is not really saying any words, Chase is making new sounds and that is a good sign.  We will most likely need intensive speech therapy down the road but if that is all, I think we can deal with that.

Along this journey, we keep hearing stories of other children that family, friends or acquaintances know or knew with Infantile Spams, and the story is never good.  It is devastating- it is a teenager in diapers, it is a grown adult with a feeding tube and unable to communicate, it is even death.  We now know Chase's story will be good.  As we watch him today dart around happily, we cannot explain and we don't know how we have been so lucky, but he is our little miracle.

In his favorite place- the Tupperware drawer

Feeding himself !