Tuesday, February 1, 2011

Starting fresh......Life with Jacob part 1

     I started this blog months ago with the intent of jotting down a few sweet sappy phrases here and there about la la la.... life here in our little piece of New York State, I got as far as two posts before real life once again set in and the project has sat. Now, I put nimble fingers to key board once again, and this time, instead of la la la fluff, twitter, giggle, life is perfect mush, I will try.......life in the key of Jacob.
     Jacob, my sweet 3 year old boy.........the biggest challenge of my life so far, a living, breathing, tidal wave of energy, love and sheer determination since the second he was conceived.  He is exceptionally bright to the point of being considered gifted, he is cute and funny and a whole list of other wonderful adjectives, a typical preschooler, yet far from typical, a list of problems make him "exceptional" or "a special needs" child. Right from the very first ultrasound Jacob has been, and continues to be, my challenge.
     "The tech really couldn't get a clear picture of his feet, can you come in to do it again?" Not a red flag to me at that point, so no problem I went back for another ultrasound and the next call was, "We need you to go see a specialist, someone to do a more in depth ultrasound, a perinatologist, no big deal really, we just want to be sure...." Ok still only a bit worried, I was pretty confident that everything would turn out fine (Which considering all the awful alternatives, it really was pretty ok, I guess?).  After yet another ultrasound we were told our son would be born with bilateral clubfoot, it would not be a big problem, some "light" bracing, all fixed, no sweat. Things never really have the "happy, no sweat fix" that we pray for and this story most definitely did not.
     Jacob was born in July of 2007, his delivery story goes right to the top of my list as worst nightmares of my entire life to date. With all the ultrasounds I got while I was pregnant (6 I believe, maybe 7) they knew he was big, and they figured I had already delivered a 9 lb. baby with my second pregnancy so it would be no problem, I had what they called a "proven pelvis". Those extra 11 ounces must have really tipped the scales because at 9lbs. 11oz. Jacob ended up wedged in tight, stuck for what seemed like forever and should have been a c-section, as they pulled the OB and I both looked up at the same time when we heard  CRACK, she said "that was a bone breaking, you heard it too?"  Yes, I did hear that breaking bone. Jacob was finally born........with a broken collar bone and I had a horribly separated pelvis that made it impossible to walk and carry or hold anything at the same time for months, no bags, no baby, this made doing much of anything by myself those first few months pretty much impossible and to this day if I move the wrong way it still causes me pain.
     At 5 days old we took Jacob to see a pediatric orthopedic surgeon, she looked at his feet and said we'd cast," but they don't really get worse" that what he had, complex clubfeet. Casts on a new born is a nightmare, almost straight leg, from thigh to toes, both legs, on this little baby that just wants to curl his legs up and cozy in, a nightmare that lasted for 2 months before our ortho declared his feet were unfixable through casting and we could just give up until he was old enough for surgery. At this point I know there are people who will question why we sought no other alternatives, you are right, why???? I truly thought we had found the best and only way and that if this doctor said casting wouldn't work then who was I to say different. I will not look back at this point and ask why, because it will solve or change nothing.
     During the first year of Jacob's life we noticed things, little things that at the time we mentioned at regular check-ups but so much focus was on his feet and "breathing problems" (mild asthma & reactive airway) that we never looked at the big picture, we had pieces of a puzzle but were to ?????? to put them together. More about those things in another post. Anyway, in February of 2008 Jacob had his clubfeet corrected surgically over the course of 3weeks and 2 hospital stays, at which time he also had a CT scan of his head because he had started to develop plagiocephaly and it was determined that his skull bones had not fused prematurely so we went ahead and had him fitted for a helmet. Two full leg casts and a helmet, many, many looks and comments out in public, a rough start, but this little boy was determined to overcome it all. Through this whole process Jacob started having some red flags for being on the spectrum, yes even at that very young age. Just before he turned a year old,  early intervention came and did an evaluation and it was determined that he would receive PT and a special teacher once a week to deal with the now host of physical issues and the spectrum issues. He had low muscle tone, favored one side of his body over the other, didn't crawl  but dragged himself with one arm only, some many other things, the ortho even figured he wouldn't stand or walk until 18 months, again his determination and strong will took over and whatever he couldn't do he found a way to compensate (and to this day is amazing at compensating) and even stood just before his first birthday and walked before 18 months. 
     Moving forward a few months and EI is going very well and we are overcoming many of his "spectrum" red flags with the help of his teacher (and I tell you she was sooooo suprised by this) , he used many signs to communicate but spoke very few words and mostly just made noises. As we approached Jacob's second birthday we started speech with EI as well. Within months Jacob went from mostly signing to and absolutely incredible vocabulary. He still had and still has oral motor muscle issue, but his vocabulary was amazing, it was like opening flood gates, an amazing turn around!  The special teacher had stopped coming by age 2 and our speech teacher felt that Jacob's vocabulary had come so far and whatever oral muscle issues remained could be dealt with when he went to school (I know now what a mistake we made in letting her go) , by the end of the summer of 2009 our PT decide to take a full time job elsewhere and Jacob refused to accept a new PT so we took it as a sign and opted out of the program. Yes, I know, it was a huge mistake, he was in no way ready and by the following summer (this past) we decided it was time for an new eval as we really began to see all sorts of issues present themselves.
     This post ends here, but really it's just beginning, stay tuned for part 2.

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