6/13/09
6/7/09
Bubby Land
All is well here in Bubbyland. The first week after surgery was a bit tough - the feeding tube site was sore and he was in pain unless he laid in just the right position. We spent a lot of time cuddling with him, which is not bad duty at all.
This week he's returning to his familiar self. He's still only able to play on his tummy for short times, but he's able to play on his side and to practice sitting up.
His tummy problems have gotten much better. He wretches occasionally, but for the most part he is able to take in his calories with little issue. He is still on a continuous feed - he is hooked to the feeding pump 18 hours and get a couple of three hour breaks. Its wonderful to be able to take him out or play with him with no tubes attached. Its more wonderful not to have to deal with a tube hanging out of his nose all the time. Bobby concurs on both counts.
Right now, Bubs is on the floor rattling his maraca and making raspberries. He is becoming quite a babbling brook. He can make several consonants and even engages in the following conversation.
We say "ma ma ma ma ma'.
Bubby says 'da da da da da'
We say "ma ma ma ma ma ma'.
Bubby smiles and says 'da da ba ba ta ta ta'.
We go to the GI doctor tomorrow and will soon start moving away from continuous feeds and towards meals. That will be huge. It will be particularly important because WE FOUND DAYCARE FOR BOBBY.
As our long term readers will remember, we have had horrendous problems finding daycare for Bobby. Providers were scared off by the feeding tubes. This latest go around we had one daycare tell us, upon learning that Bobby had Ds, that they were full and we could not even apply for the waiting list. Five minutes later, Valerie called back pretending to be someone else and was told that the center had a very short waiting list and that we could come for a tour the following week. Of course all this is illegal and made worse in my mind by the fact that the center is funded by Chicago Public Schools. However, when I complained to CPS, they seemed relatively unconcerned that the center director had told Valerie that 'she wasn't sure she even needed to follow the ADA'. We haven't decided how to deal with them.
But, the good news is we have found a lovely daycare center in Evanston. Its on a hospital campus, which let's face it, is not a bad idea for the Bubs. The center director has a son with developmental disabilities and the center has another child with Down Syndrome. Bobby will start in the room for 7-12 month olds which is a perfect fit for him developmentally. He starts in September.
In the meantime, we are planning a lovely summer. We are going to a children's music concert next Saturday. We have gotten doctor's permission for Bobby to take swimming lessons and also bought him a kiddie pool for our yard. Our major developmental goals are to get Bobby sitting by end of August as well as eating a couple of meals a day of pureed food. His current cognitive goal is to learn how to hit things with a mallet. I suspect that's one of those things we'll regret him knowing at some point. And we are generally just going to enjoy being a family. Outside of the hospital.
This week he's returning to his familiar self. He's still only able to play on his tummy for short times, but he's able to play on his side and to practice sitting up.
His tummy problems have gotten much better. He wretches occasionally, but for the most part he is able to take in his calories with little issue. He is still on a continuous feed - he is hooked to the feeding pump 18 hours and get a couple of three hour breaks. Its wonderful to be able to take him out or play with him with no tubes attached. Its more wonderful not to have to deal with a tube hanging out of his nose all the time. Bobby concurs on both counts.
Right now, Bubs is on the floor rattling his maraca and making raspberries. He is becoming quite a babbling brook. He can make several consonants and even engages in the following conversation.
We say "ma ma ma ma ma'.
Bubby says 'da da da da da'
We say "ma ma ma ma ma ma'.
Bubby smiles and says 'da da ba ba ta ta ta'.
We go to the GI doctor tomorrow and will soon start moving away from continuous feeds and towards meals. That will be huge. It will be particularly important because WE FOUND DAYCARE FOR BOBBY.
As our long term readers will remember, we have had horrendous problems finding daycare for Bobby. Providers were scared off by the feeding tubes. This latest go around we had one daycare tell us, upon learning that Bobby had Ds, that they were full and we could not even apply for the waiting list. Five minutes later, Valerie called back pretending to be someone else and was told that the center had a very short waiting list and that we could come for a tour the following week. Of course all this is illegal and made worse in my mind by the fact that the center is funded by Chicago Public Schools. However, when I complained to CPS, they seemed relatively unconcerned that the center director had told Valerie that 'she wasn't sure she even needed to follow the ADA'. We haven't decided how to deal with them.
But, the good news is we have found a lovely daycare center in Evanston. Its on a hospital campus, which let's face it, is not a bad idea for the Bubs. The center director has a son with developmental disabilities and the center has another child with Down Syndrome. Bobby will start in the room for 7-12 month olds which is a perfect fit for him developmentally. He starts in September.
In the meantime, we are planning a lovely summer. We are going to a children's music concert next Saturday. We have gotten doctor's permission for Bobby to take swimming lessons and also bought him a kiddie pool for our yard. Our major developmental goals are to get Bobby sitting by end of August as well as eating a couple of meals a day of pureed food. His current cognitive goal is to learn how to hit things with a mallet. I suspect that's one of those things we'll regret him knowing at some point. And we are generally just going to enjoy being a family. Outside of the hospital.
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