Its been a long couple of weeks here in Grunsted land. We've been going through Bobby's 1 year assessments (delayed because of all of his surgeries). The results have been disheartening. His Physical Therapy assessment showed him at the same age equivalency as his 6 month assessment. He came out as 4-5 months. To some extent, we just flat our reject that score. He is much, much stronger than he was 6 months ago and his general health and fitness aren't even comparable to winter time. But he has yet to achieve any of the major milestones - he can't roll over tummy to back by himself, he can't sit, he can't crawl, he can't walk. Etc.
On the speech/feeding side, he has done better in terms of oral motor skills. He can babble quite a few sounds now. He keeps his tongue in his mouth more of the time. But he can't eat. Not only can't he eat, but he is doing worse than he did 10 months ago when he started eating baby food. Then he could eat 5-6 bites of puree. Now we struggle to get one bite into him. He has choked several times recently when he tried to swallow - something he's never done before. We hope that things will get better once his g-tube feedings are better spaced and he has a chance to feel hungry (right now, he's eating 14 hours a day) but I'm starting to wonder if he will ever be able to eat on his own. We're a long, long way from giving up on that, but the reality is some people do end up spending their lives on a feeding tube.
He hasn't had his occupational therapy assessment yet (tomorrow) but his developmental assessment did have some encouraging signs. Bobby's cognitive development has been better now that he feels better. He knows his name now, imitates our actions, engages in interactive play, and is starting to really study the world around him to try to figure out how things work.
So we tell ourselves it could be much worse. And it could. Now that he's doing so much better medically its easy to forget how sick he was a year ago. And its easy to start taking that for granted. But, now that we're not immersed in heart problems and GI surgeries we're really starting to feel the impact of the developmental disability side of Down Syndrome. And its horrible to want so much for your baby to be able to roll over and yet not be able to teach him how to after months of trying. And how do you teach your baby to swallow without choking?
When I hold Bobby in my arms and he reaches up to give me a hug and kiss I don't focus on these details - I just see the beautiful person he is. But at the same time I'm struggling now to find - in the pressure not to dwell on the negative and the imperative to count our blessing - the time to grieve for what's been lost. I hear a lot (and heck, have repeated myself a thousand times) that all children have limitations, that Bobby will eventually reach all these milestones, but the reality is that Bobby's climb is much steeper than that of other children and that he may not learn how to do all the things that most of us take for granted. I hope for the best. We'll give him the help he needs to reach his full potential. But this is breaking my heart.
8/5/09
7/27/09
7/10/09
Feeding Frenzy
This week in Bubsy land has found us focusing on his feeding schedule. We went to the ER Monday night because his wretching had gotten so bad that it was impacting his breathing. X rays confirmed that his g-tube and nissen were still in place. They admitted us with promises of an upper GI on Tuesday morning. But, when Tuesday came around they did not do anything further to help him. Instead they offered to keep him and 'watch' his feed for 36 hours. Now, 'watch' on one of the main floors of the hospital is a tricky concept. The nurses have a full load of patients in different rooms and are required to check on Bubs once every four hours. The residents who we might page are of course quite busy and take a long time to come when paged. So, 'watch' means that Mamas A and V sit on their butts for 36 hours and watch Bubsy and listen to the cries of the child in the next bed and wait for Bobby to run a temperature because of the infection he always gets in the hospital. So if he did wretch the doctors would have to take our word for it. Which is exactly what we wished they would do based on us having 'watched' him wretch for the past several weeks. (I don't know what sound a tree makes in an empty forest, but apparently a wretch is not heard unless its viewed by at least a resident). It took me about 7 hours of arguing but Bobby was eventually discharged for us to 'watch' from our own house. They suggested we change his feed and sent a nutritionist to give us a recommendation. The nutritionist asked me what I thought would be a good approach and wrote that down on her sheet.
So we got nowhere except that Bubs did get an IV and a break from eating for about 12hours. And we've started him on a gentler schedule. So far it looks promising although it will take another week or so for us to get back to any kind of maintainable schedule. In the meantime, Bobby had a cold - predating the hospital, we think, so its been a quiet week with lots of snuggling.
He is learning to push himself on a four wheeled scooter. He has started saying 'kay kay kay kay'. And has been the case for several months now, he just feels a ton stronger. This weekend we are starting our "Merry Music Maker" class and are hopefully going to a folk festival where they have an instrument petting zoo. He continues to refuse to roll over and we are beginning to think the boy may walk before he regularly rolls over tummy to back. That must be mohawk thinking.
So we got nowhere except that Bubs did get an IV and a break from eating for about 12hours. And we've started him on a gentler schedule. So far it looks promising although it will take another week or so for us to get back to any kind of maintainable schedule. In the meantime, Bobby had a cold - predating the hospital, we think, so its been a quiet week with lots of snuggling.
He is learning to push himself on a four wheeled scooter. He has started saying 'kay kay kay kay'. And has been the case for several months now, he just feels a ton stronger. This weekend we are starting our "Merry Music Maker" class and are hopefully going to a folk festival where they have an instrument petting zoo. He continues to refuse to roll over and we are beginning to think the boy may walk before he regularly rolls over tummy to back. That must be mohawk thinking.
7/7/09
The GI Saga Continues...
Bobby was admitted to CMH again tonight... having issues with discomfort with his feeds and weird breathing (sleep apnea?). They've scheduled an upper GI for tomorrow. We think he's somehow undone his Nissen surgery, which is supposed to help with his acid reflux. Let's hope they uncover something to explain the distress he's been in for the past few days!
7/4/09
Summertime in the City
Bobby is doing great these days. The g-tube/nissen surgery have made a huge difference in terms of how well he feels. Now that he's keeping his feeds down he's had a nice growth spurt and, of course, feels much better without throwing up 10 times a day.
The feeding schedule is a little hectic right now. His stomach shrank when he was on continuous feeds so we need to work our way back up to being able to handle meals. He does a continuous feed for 12 hours at night and then in the day eats 3 ounces over an hour with two hour breaks. So we're tied to the feeding tube a lot of the time.
That hasn't slowed him down though. He's getting stronger every minute. He's very close to being able to sit up all by himself and is stable enough that we can do things like push him around in a little tricycle and put him on his wooden horse for a rollicking good time. We go to the park to swing and when its hot he plays in his baby pool. It's a blast.
We've had a couple of problems - last weekend at about 1 am Bobby was crying and I was trying to get access to his tube so that I could vent it (remove the air from his tummy). In my haste I pulled out the tube. We went to the ER and they replaced it, poorly. So, we were back again in about 36 hours when the tube fell out of its own accord. Yuck. Valerie and I estimated the total ER visits for Bobby's first 15 months at somewhere around, well, 10 or 15. I've included a couple of videos below to show how Valerie and I have developed a whole ER variety show to keep Bobby entertained.
Day care is pretty much set. He did a trial run on Wednesday and seemed to do pretty well. He didn't freak out when Luke, a cute little boy in his class, stole his toys, but he did push him away a little bit, which I think is a good sign. His teacher seems excited to have Bobby in class.
We are going to have to find a new physical and speech/feeding therapist for Bubs. The daycare is not within their coverage area. We're disappointed because they have been great with Bobby, but we need some sanity in our lives and trying to juggle day care 30 minutes from our house and therapy visits at the house is just too much.
July brings with it a fun trip to Kansas City to see family and friends. We are trying to get out of the house as much as possible - we're so stir crazy from the last year of not being able to leave. Today we are going to go see Snoopy The Musical. I really hope Bobby likes it because I love children's shows and its something I would love to be able to do with Bobby for years to come.
Next Saturday he and I are going to start a music class. In August Mama V and Bobby will be attending Aqua Babies swim classes. He takes another music class with Nanny Beth on Mondays. He's a very busy boy - and how wonderful that his busy-ness does not include cardiology tests or GI hospitalizations. He's thriving and its just a miracle to watch.
The feeding schedule is a little hectic right now. His stomach shrank when he was on continuous feeds so we need to work our way back up to being able to handle meals. He does a continuous feed for 12 hours at night and then in the day eats 3 ounces over an hour with two hour breaks. So we're tied to the feeding tube a lot of the time.
That hasn't slowed him down though. He's getting stronger every minute. He's very close to being able to sit up all by himself and is stable enough that we can do things like push him around in a little tricycle and put him on his wooden horse for a rollicking good time. We go to the park to swing and when its hot he plays in his baby pool. It's a blast.
We've had a couple of problems - last weekend at about 1 am Bobby was crying and I was trying to get access to his tube so that I could vent it (remove the air from his tummy). In my haste I pulled out the tube. We went to the ER and they replaced it, poorly. So, we were back again in about 36 hours when the tube fell out of its own accord. Yuck. Valerie and I estimated the total ER visits for Bobby's first 15 months at somewhere around, well, 10 or 15. I've included a couple of videos below to show how Valerie and I have developed a whole ER variety show to keep Bobby entertained.
Day care is pretty much set. He did a trial run on Wednesday and seemed to do pretty well. He didn't freak out when Luke, a cute little boy in his class, stole his toys, but he did push him away a little bit, which I think is a good sign. His teacher seems excited to have Bobby in class.
We are going to have to find a new physical and speech/feeding therapist for Bubs. The daycare is not within their coverage area. We're disappointed because they have been great with Bobby, but we need some sanity in our lives and trying to juggle day care 30 minutes from our house and therapy visits at the house is just too much.
July brings with it a fun trip to Kansas City to see family and friends. We are trying to get out of the house as much as possible - we're so stir crazy from the last year of not being able to leave. Today we are going to go see Snoopy The Musical. I really hope Bobby likes it because I love children's shows and its something I would love to be able to do with Bobby for years to come.
Next Saturday he and I are going to start a music class. In August Mama V and Bobby will be attending Aqua Babies swim classes. He takes another music class with Nanny Beth on Mondays. He's a very busy boy - and how wonderful that his busy-ness does not include cardiology tests or GI hospitalizations. He's thriving and its just a miracle to watch.
7/3/09
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