Ben's world has been keeping us busy and out of trouble.
MEDICAL UPDATE:
I'm happy to report that his vomiting issues has subsided with the switch to the new formula "EleCare". However, he still hasn't regained the weight he lost during those months of vomiting and has actually lost even more since the vomiting has stopped... which is puzzling. His GI doc now wants to add a high calorie, protein-free nutritional supplement called "Duocal" to his diet. This can be mixed in with his current formula and will add additional calories. We will start this next month.
Ben will also need a test called an "Upper GI " to make sure that he doesn't have a slipped hernia above his Nissen (the surgery he had at 4 months that wrapped the upper part of the stomach around the esophagus and stitched in place to prevent reflux). This could have been the cause of his past vomiting and the reason why Ben still has so much air in his stomach that needs vented during his feeds.
Ben had an eye exam which showed that his vision has worsened and we can't hold off on glasses any longer. One eye is near sighted and the other is far sighted. Seeing how Ben does with glasses should be interesting. We are only going to have him wear them during school hours since he sits up most of the time and when sitting in his high chair at home. Trying to get him to wear glasses when scooting around on his side will just be too difficult and the eye doc agreed that it wasn't worth fighting him and having them broken. Wearing them outside won't work either because he needs a double layer of darkness (we put sunglass clip-ons on his sunglasses) and can't obtain that without getting prescription sunglasses too and insurance only covers one pair. Will definitely post a pic of Ben in his new glasses when they come in.
SCHOOL UPDATE:
School is going really well. Ben is in morning preschool again this year, has the same teacher, the same one-on-one aid and our two day nurses are the same. This made the transition very painless. The only addition to the team has been the interpreter... and she is wonderful too. At first, Ben seemed really interested in all she was doing and was trying to mimic her. Most recently, he has become stubborn with his signing and is refusing to do any. I think he is just trying to be difficult to see what he can get away with.
RECREATION:
Ben is still loving his car rides, playing on the mats in our garage, going for walks and swinging.
His wheelchair soccer season has started up again and he has been enjoying that. This year he is able to give "high fives" and that has been a big hit! Personally, I love being around so many families/kids that understand and get Ben and his needs. It seems to be the place "he fits in" the most. They are also a great resource for any questions regarding making adaptions to house, bath and car too. Since Ben is the youngest, they have already done what we are in the beginning stages of planning.
Horseback riding starts in October.
And last but not least, I think we have adjusted well to not having night nursing every night and I enjoy being with Ben when he wakes up with the roosters (5am is his standard wake-up time). But we have been lucky with only having a night or two a week open. Come October, I will have a 9 night stretch of no nursing when our main night nurse is on vacation so I may sing a different tune then. :)
