Two weeks ago we had Alex's follow-up appointment with the feeding clinic and their team of specialists. Alex weighed 50 pounds and 3 ounces, a 30% increase from her last visit in May. While she is clearly gaining, they weren't as happy with the weight gain as they were at the last appointment. I think I can attribute that to the fact that since she's out of school, her feedings start later in the day so she's not getting as many calories in. Having said that, since we've had the appointment and reassessed her goals, she is now eating 8-12 ounces by mouth each meal, AND - which is a very new, 2-3 ounces of thickened pedisure from her squeeze bottle at every meal. She has made HUGE gains with her squeeze bottle the last two weeks and I just know we are going to be down to only half a tube feeding come her next follow-up appointment in November. It's really a double edge sword for me - while I'm THRILLED she's gaining so much weight and clearly meeting her goals, she's gaining weight - which is just making it harder and harder to carry her throughout the house or to transfer her in and out of the car. I'm hoping to take a ride this Saturday to a car dealership that specializes in lift vans - I truly cannot see lifting her in and out of the car at her weight for much longer...just think - if I want to go to the grocery store and get a gallon of milk it goes like this....lift Alex's 50 pound self from the house to her car seat, lift her 7o pound wheelchair into the van, get to the store, lift the 70 pound wheel chair out of the car, lift her 50 pound self into the wheelchair, shop, get back to the car, load her 50 pound self into the car, lift the 70 pound wheelchair into the car, get home, unload her 50 pound self into the house, unload the 70 pound wheel chair out of the car. If you do the math, that's 480 pounds for a 15 minute trip. On average, between therapy appointments, Dr. appointments, and just general running around town, she's in the car 2- 3 times a day - which would equal 960 or 1,440 pounds lifting - and that's just car time, not to mention all the lifting that is done in the house - I should look like Hercules by now!!!
Moving on, I'm embarrassed to say that we have misplaced Alex's glasses since the end of June - I'm guessing she lost them at school, or on the bus, but the school doesn't have them and there's really no one at the bus transportation that I can check with now that it's summer to see if they have a lost and found. I took her yesterday for her annual check up and I told them that she has not worn her glasses in over two months. They did their normal battery of testing on her and said that while she is significantly farsighted (meaning that she can't really see close up and is not REALLY enjoying all the pictures in her books) that her stigmatism has dropped 25% and her farsightedness has decreased by 10%. She is still significantly farsighted that glasses are required. We have been using pictures for her to make choices with and are in the process of getting an eye gaze communication system for her - but I'm really starting to wonder if when she's being presented with the pictures and she's looking at them, that when she's trying to reach for them her reach is so off because she's not seeing clearly. Her eye gaze and obvious reach for pictures is very new, so I'm anxious to see if, in 7-10 days when her glasses are ready, that that will improve.
Today Alex got a phone call from a boy that is in her 'typical' second grade class inviting her to his birthday party! Last year at the pool this little boy would come up to her frequently and say hello and ask her how she was doing, but we had no idea who he was. I think it's SO AWESOME that he wanted her to be at his birthday party - obviously a very touching moment for us. I'm nervous that there will be about 25-30 kids at the party and how they will all react to her, but from what I can tell, most of them are second graders that went to school with her this year and have experienced her happy yelling or odd quirky behaviors, so I'm hopeful! It was just such and ordinary request that made us feel so happy for her and very happy that she has inclusion classes at her school. Can't wait to see what Saturday brings!!
Moving on, I'm embarrassed to say that we have misplaced Alex's glasses since the end of June - I'm guessing she lost them at school, or on the bus, but the school doesn't have them and there's really no one at the bus transportation that I can check with now that it's summer to see if they have a lost and found. I took her yesterday for her annual check up and I told them that she has not worn her glasses in over two months. They did their normal battery of testing on her and said that while she is significantly farsighted (meaning that she can't really see close up and is not REALLY enjoying all the pictures in her books) that her stigmatism has dropped 25% and her farsightedness has decreased by 10%. She is still significantly farsighted that glasses are required. We have been using pictures for her to make choices with and are in the process of getting an eye gaze communication system for her - but I'm really starting to wonder if when she's being presented with the pictures and she's looking at them, that when she's trying to reach for them her reach is so off because she's not seeing clearly. Her eye gaze and obvious reach for pictures is very new, so I'm anxious to see if, in 7-10 days when her glasses are ready, that that will improve.
Today Alex got a phone call from a boy that is in her 'typical' second grade class inviting her to his birthday party! Last year at the pool this little boy would come up to her frequently and say hello and ask her how she was doing, but we had no idea who he was. I think it's SO AWESOME that he wanted her to be at his birthday party - obviously a very touching moment for us. I'm nervous that there will be about 25-30 kids at the party and how they will all react to her, but from what I can tell, most of them are second graders that went to school with her this year and have experienced her happy yelling or odd quirky behaviors, so I'm hopeful! It was just such and ordinary request that made us feel so happy for her and very happy that she has inclusion classes at her school. Can't wait to see what Saturday brings!!
3 comments:
Wow I didnt even think about what the glases will mean for her eye gazing! Cant wait!
We bought our conversion van off of Ebay, used, for a really great price. We then had the lift installed. It was MUCH cheaper than new, just in case you need that. I know how you feel. Joshua needs to gain weight also, but all I can think of is how much more that will hurt my back. My chiropractor is my best friend now! JK, but really, I live for those weekly appt's sometimes! Alex is just gorgeous! Joshua also has a clinical dx of AS.
Sooooo???? Was the party yesterday? If so, how'd it go?
Glad to hear she's made so much progress on the squeeze bottle! I think that's the best way for Harlie, too. I hope she's done with those tube feedings for good soon. What a change that would be!
See you on Tuesday???
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