My chubby-lumpkin!
Just got back from seeing the dietitian at Children's for our monthly visit.
Daniel's weight is up to 30 lbs 6 oz! that is the 25-50 percentile for his age and height! WAHOO!!!!
G-Tube? NO
Cautious feedings, most certainly, as he is high risk for aspiration......but he is thriving. Never had pneumonia...and won't get a g-tube until we feel he needs one.
We're following our guts here and we might end up regretting it later. But right now I so strongly feel we are making the right decision. Again, I am not saying no to a g-tube forever. If it is needed at a later date and Daniel is showing signs of needing it.....I'm all for it. We have obviously been doing something right for the past 2 1/2 years since he has never been sick from aspirating. He is not silently aspirating, when he does (rarely) get in distress he does what we all do, he coughs. Not all kids with special needs do this, some don't have that come to them naturally. So for now, yes the information is stored in my brain and it might resurface in a while, but for now.......its stored, duly noted.
Now, off to the dentist to get his chipped tooth fixed! No, I couldn't tell you what the heck he chipped his tooth on either. He eats pureed food for goodness, and he doesn't chew on toys! Just woke up and a chunk of tooth missing! Whats up with that?!?!
Oh by the way.........18 days until Florida trip!!! Anyone have any advice of traveling with a special needs child? I've never done it. Heck how about traveling with a child in general............by plane.........never done it! LOL
Just got back from seeing the dietitian at Children's for our monthly visit.
Daniel's weight is up to 30 lbs 6 oz! that is the 25-50 percentile for his age and height! WAHOO!!!!
G-Tube? NO
Cautious feedings, most certainly, as he is high risk for aspiration......but he is thriving. Never had pneumonia...and won't get a g-tube until we feel he needs one.
We're following our guts here and we might end up regretting it later. But right now I so strongly feel we are making the right decision. Again, I am not saying no to a g-tube forever. If it is needed at a later date and Daniel is showing signs of needing it.....I'm all for it. We have obviously been doing something right for the past 2 1/2 years since he has never been sick from aspirating. He is not silently aspirating, when he does (rarely) get in distress he does what we all do, he coughs. Not all kids with special needs do this, some don't have that come to them naturally. So for now, yes the information is stored in my brain and it might resurface in a while, but for now.......its stored, duly noted.
Now, off to the dentist to get his chipped tooth fixed! No, I couldn't tell you what the heck he chipped his tooth on either. He eats pureed food for goodness, and he doesn't chew on toys! Just woke up and a chunk of tooth missing! Whats up with that?!?!
Oh by the way.........18 days until Florida trip!!! Anyone have any advice of traveling with a special needs child? I've never done it. Heck how about traveling with a child in general............by plane.........never done it! LOL
5 comments:
We just got back from Disney and had a great time. It was pretty hot there in the afternoon so we would go back to the resort in the afternoon for a nap and then go again at dinner. I am sure you already know this but make sure you get the pass for children with special needs and make sure they also give you a similar pass for his wheelchair/stroller. We did not have the stroller pass and spent a lot of time carrying Elizabeth around. You guys are going to have a blast. Just watching the amazement in Elizabeth's eyes was everything I needed. Have a great time.
We had a great experience when we flew with our daughter. The only problem we had was with security wanting us to remove her DAFOs- Uh- NO! She would have freaked. We had to argue with them about it & was a problem. We were flying to meet my DH, so the airline gave my mom a pass to help us down to the gate. They then took over, folding up her special needs stroller, putting her carseat in the airline seat, checked on us several times & helped me unload. They had the stroller open at the end of the gate, with the stewardess carrying my carseat while I carried MM. They also had an attendent there ready to help me through the airport, but once again, they gave my DH a pass to meet us at the gate. The flight back was the same, but I had DH to help on the way back. Very kind & helpful. No problems with the DAFOS on the way back. I also just saw a story on the news about changing the policy for it.
Disney was great to SNK! Like lizzymom said, get the pass for your stroller & him. You avoid the long lines & the staff is extra kind to you. It was amazing!
You're a great mom!!!
Thank you very much! I try.
Also, thanks for the infor on traveling and disney pass info. I'm hoping I'm not forgetting anything!
If you're packing jars of pureed food, you might want to call your airline and find out if they'd advise you to have a dr.'s note -- I carried Q's stuff on because there was no way I was checking his meds and food stuff -- too hard to replace if lost. They advised that I have a note explaining the special dietary needs. If you're packing into checked luggage, you won't have a problem though.
Make sure that you have his "never fail" toys in a carry on. Q's is that light spinner thingy -- it's a clear ball on a handle and when you push the little button, LEDs spin inside. He was all set to be really cranky (2 1/2 hrs on the plane before we took off), but after nursing and having a diaper change, he fell asleep in his seat with his mouth open on the toy, with it running. The people (airline and passengers) were great though.
Take advantage of the early boarding opportunity -- I was flying alone with all five and we needed the whole time to get the seat strapped in and everyone adequately arranged.
You'll have a great time and you are such a good mommy!!
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