Owen Gandy: July 2014

Owen has been home for over 7 months now and is doing pretty good. He is 16lbs and not gaining weight like he should be. We have seen a nutritionist and a speech therapist to help with his feedings twice a month. Since he seems to like solids better then his milk, the therapist is going to work on him tolerating different textures. We are trying any and every way to get calories into him.

Owen has been released from the cardiologist!! He did his echo and the doctor said everything looked good!!

We have had a busy month dealing with Owen's head. Earlier in the month we saw the ENT that specializes in head and facial surgeries. He diagnosed Owen with Brachiocephally (back of the head is flat), turricephally (Tall head) and Microcephally (Small head). The doctor was worried about his small head because that could mean that the brain could have stopped growing and therefore the skull has no reason to expand and then will fuse early. The doctors other concern was that the skull had simply just fused early. Owen was ordered to do a CT and MRI to rule both of these out and then to go see a neurosurgeon. We had to wait until the following week to do the scans and then another 3 days to see the neurosurgeon and get the results. Meanwhile we had a feeling that we would be planning for skull reconstruction surgery in the next month. We met with the neurosurgeon and got great news, Owens brain seemed to be growing at a normal rate, and the sutures in his head were all open still (not fused yet) which meant that he would not need the reconstruction surgery!! The neurosurgeon suggested that we try a reshaping helmet for 3 months and see how effective it is. If results are minimal then we can consider a surgery where he would place screws and a crank to pop Owen's skull out over time with a key that we would turn daily (ouch). Praying that the helmet will work and we will not have to do any sort of surgery.

Immediately after the Neuro appointment we called Cranial Tech to set up an appointment for Owen's helmet and they had an opening the next day!! We packed up everything and woke up bright and early to make our first of many trips to Dallas. The appointment went great, and Owen cooperated for the most part after a long 5 hour drive. They took 3D images of his head in some super cool high tech room full of cameras and sent them off to make his custom helmet that will be ready to pick up in 10 days. So Tuesday morning we got on the plane for our second trip to Dallas, and Owens first plane ride and he did great. he got to try on his helmet and they made some cuts and tunnels (for his glasses) so it will fit perfectly and he didn't seem to mind. We heard sleeping would be the hardest adjustment for Owen, and I believe it. Owen fell asleep pretty quickly after a long day but woke up at 1am and was one unhappy camper. We took off his helmet to give him a breather and there was a large bump on his head that disappeared by the morning but i can only imagine how uncomfortable that was for him. We flew back to Lubbock this morning and hoping that tonight goes a little better.

Owen has been working hard on some new 'tricks'!! He is sitting up on his own really well now and has mastered the art of clapping!! We are working hard to get some leg strength and for his to start enjoying tummy time more.