I am not even sure where to begin really. For the past two months things have been quiet. Ben seemed to be doing much better and we were able to take some small day trips for a little holiday. This week things slowly reverted to the tangled mess of appointments that our life had been a few month ago.
Tuesday I had calls from nearly every department at the IWK children's hospital. We are gearing up to be at that place every few days again. To be honest this was to be expected. The ramp up to the next surgeries was to start in the fall and with that comes all the appointments to prepare. What I did not expect was it to all come at once.
Yesterday we had a trip to see Dr. H in opthamology (please forgive me I cannot pronounce her name and at the moment I cannot think how to spell it either...her first name is Santa...that I can remember lol). Poor kid went through a long dawn out series of exams, eye drops and lights. His eyes had to be dilated. Things, for now, look normal. He will be seen back in two months ( around mid October) to be rechecked prior to surgery.
Ben will see the cleft palate team next month along with ENT, ID, plastics, and cardiology all at the IWK. He will be seen at least once a week by hearing and speech here in the valley.
Today Ben went to see Dr. Hilliard here in town. It was for a weight check and to investigate a new 'symptom' that has developed.
While Ben has surpassed all his normal motor milestones, his speech is (understandably) delayed. He does show good signs of hearing, which should mean hearing and speech will focus mostly on helping to develop appropriate and understandable speech post repair. His length has really caught up to where it should be, as has his head circumference. His weight however has decided to plateau yet again! I am getting so frustrated. At 8 1/2 months old he weights 7.15 Kg (15 pounds 12 ounces).
Part of the issue is that he is so active. He is burning more calories than before and hasn't greatly increased what he has taken in. The doctor isn't sure where to go from here really. We are going to tried fortified feeds at bedtime, through the night and first thing in the morning when the volume of what he is taking is down as he is sleeping longer.
Lets hope this works and it gets Benny Bean back on track. A problem with weight may cause a delay in the surgery as our plastics guy is pretty picky on how much he should gain prior to the palate surgery.
