This is the end, for now, of Bobby's blog. I haven't updated it since before Christmas, largely because it started to feel like a chore, but I thought it needed one final post as a sign off.
Really, this feels like the end of our first chapter with Bobby. The chapter with two open heart surgeries and 13 hospitalizations. The chapter where we agonized over his every milestone.
The last few months have been so different. Learning has become much easier for Bubs. It used to be that every step was initiated by the mamas and required endless repetition before he mastered the new skill. Now, he's figuring some things out on his own and understands what we're teaching him much more quickly.
Oh, its not without trials. He started eating purees and then just stopped. Now we're restarting the feeding process with grown up food and it's a slow journey. While Bobby's been blessed with good health for the last few months, we still have the most difficult of his heart surgeries looming ahead about a year from now. He's got some habits that make his mamas a little crazy - staring at lights for much longer than he should, hitting his head, and some other sensory issues. But as crazy as they make us, his therapists assure us that they are normal for a child that's had low sensory input like Bobby has - meaning very little tummy time and no crawling.
Mostly though, its good news. He's scooting everywhere now, a process that also has increased his upper body strength exponentially. He's growing well - he's even got a little extra chub on his tummy, hopefully waiting to kick off a growth spurt. He loves daycare, loves his teachers, and enjoys interacting with the other children. He's about to graduate to an older room where he'll get more stimulation. He's trying to pull himself up - one of those skills we didn't introduce to him - its his own desire to be mobile that motivates him. He's not got a lot of language yet, but he is fully capable of expressing himself. And he definitely understands a fair amount of what we say to him. He's started to stand up for himself around other children and sometimes he willfully misbhaves.
He's full of laughter and wonder. Given what we've been through in the first chapter, its amazing to spend this time with him now. As we move on, I want to say thank you to all of the readers of This Bobby's Life. Your support has been invaluable!
3/21/10
12/18/09
Holiday Bubs
Wow, its been a while since my last post. I hardly know where to start on the Bubs catch up.
We celebrated Thanksgiving in classic Grunsted style by hanging out at the hospital. Bobby had a tonsilectomy/adenoidectomy and tear duct probe. The original hospitalization was supposed to be overnight but we were there three days waiting for Bobby's oxygen saturation levels to stabilize. Spending a holiday in the hospital is a definite downer (although the mood was lightened by our good friends the Medinas who brought us Thanksgiving dinner) but its good to have the surgery behind us. Hopefully he'll be healthier for the rest of the winter.
Since the surgery, we've been working to increase Bobby's food intake. His weight has stalled a bit. We've tried increasing the calorie count of the food he's on, but its given him bad diarrhea (or frequent blow outs, as we're fond of saying) and kept him up at night. So, we're back to his old formula formulation, planning to increase the volume he eats.
Lastly on the medical front, we've had two ER visits this week. Bobby's Mic-Key button came out Saturday night. Valerie went to comfort a crying Bubs at 3 am and found his sheets soaked. Unfortunately, the tube had been out so long that his g-tube hold had started to close so we couldn't replace it ourselves. Valerie volunteered for hospital duty and five hours later Bobby was home with a smaller button.
Then yesterday I got a call from daycare after his afternoon nap that he had turned blue around his eyes and sweated out his clothes. I'm not sure that he was really blue as in lack of oxygen blue - that has always started at his lips and tongue. But, his teachers are great and I trust them when they say something is wrong, so we went back to the ER. Four hours later we were going home after negative chest x-rays and a good EKG.
Therapy has been slowed some this month by the medical goings ons. Still things are going well. His Developmental Therapist told me that Bobby was beginning to narrow his percent delay, meaning that not only is he progressing, but he is learning at a faster rate than he has in the past.
The Bubs is getting strong! His body feels so much tighter when I toss him into the air - I credit that to all that time he's spent sitting up. He's able to pivot - he uses his legs to turn himself 360 degrees. He is also starting to butt scoot a bit. In the last couple of weeks, he's learned to pull himself into sitting position. He starts on his tummy and then does the splits. He pushes his upper body upright by 'walking' his arms towards his body. Its quite impressive.
Of course, we've gotten some negative feedback from our therapists about this adaptation. I understand that it's not ideal for him to be relying on this position - he needs to stop doing the splits so much and start stabilizing his hips. That said, he is 20 months old. At 20 months, the boy deserves some mobility by whatever means he can achieve it. Goodness knows we've tried hard enough to do things the 'right' way.
Bubsy is getting to be more fun by the day. He is starting to develop a sense of humor and is very conscious of whether or not we are watching him when he makes his silly sounds and gestures. He gives 'five' and enjoys being clapped for. My son the entertainer.
We're having a great Christmas season. Little Lord Bubsleroy is going to get more toys than he needs. I have to start packing up some of his current stuff now. We've seen Santa Claus and shown some curiousity but haven't pulled any hair or beard as I guessed he might. We have a couple more chances this weekend as we're going to a Christmas party for one of our play groups tomorrow and then having Breakfast with Santa at Lambs Farm on Sunday.
We celebrated Thanksgiving in classic Grunsted style by hanging out at the hospital. Bobby had a tonsilectomy/adenoidectomy and tear duct probe. The original hospitalization was supposed to be overnight but we were there three days waiting for Bobby's oxygen saturation levels to stabilize. Spending a holiday in the hospital is a definite downer (although the mood was lightened by our good friends the Medinas who brought us Thanksgiving dinner) but its good to have the surgery behind us. Hopefully he'll be healthier for the rest of the winter.
Since the surgery, we've been working to increase Bobby's food intake. His weight has stalled a bit. We've tried increasing the calorie count of the food he's on, but its given him bad diarrhea (or frequent blow outs, as we're fond of saying) and kept him up at night. So, we're back to his old formula formulation, planning to increase the volume he eats.
Lastly on the medical front, we've had two ER visits this week. Bobby's Mic-Key button came out Saturday night. Valerie went to comfort a crying Bubs at 3 am and found his sheets soaked. Unfortunately, the tube had been out so long that his g-tube hold had started to close so we couldn't replace it ourselves. Valerie volunteered for hospital duty and five hours later Bobby was home with a smaller button.
Then yesterday I got a call from daycare after his afternoon nap that he had turned blue around his eyes and sweated out his clothes. I'm not sure that he was really blue as in lack of oxygen blue - that has always started at his lips and tongue. But, his teachers are great and I trust them when they say something is wrong, so we went back to the ER. Four hours later we were going home after negative chest x-rays and a good EKG.
Therapy has been slowed some this month by the medical goings ons. Still things are going well. His Developmental Therapist told me that Bobby was beginning to narrow his percent delay, meaning that not only is he progressing, but he is learning at a faster rate than he has in the past.
The Bubs is getting strong! His body feels so much tighter when I toss him into the air - I credit that to all that time he's spent sitting up. He's able to pivot - he uses his legs to turn himself 360 degrees. He is also starting to butt scoot a bit. In the last couple of weeks, he's learned to pull himself into sitting position. He starts on his tummy and then does the splits. He pushes his upper body upright by 'walking' his arms towards his body. Its quite impressive.
Of course, we've gotten some negative feedback from our therapists about this adaptation. I understand that it's not ideal for him to be relying on this position - he needs to stop doing the splits so much and start stabilizing his hips. That said, he is 20 months old. At 20 months, the boy deserves some mobility by whatever means he can achieve it. Goodness knows we've tried hard enough to do things the 'right' way.
Bubsy is getting to be more fun by the day. He is starting to develop a sense of humor and is very conscious of whether or not we are watching him when he makes his silly sounds and gestures. He gives 'five' and enjoys being clapped for. My son the entertainer.
We're having a great Christmas season. Little Lord Bubsleroy is going to get more toys than he needs. I have to start packing up some of his current stuff now. We've seen Santa Claus and shown some curiousity but haven't pulled any hair or beard as I guessed he might. We have a couple more chances this weekend as we're going to a Christmas party for one of our play groups tomorrow and then having Breakfast with Santa at Lambs Farm on Sunday.
11/24/09
Rough Going
It was a tough day for Bubsy. He had a temperature around 99.7 when we got to the hospital, but it seemed to fall after we took a few layers off so we went ahead. The surgeries all went fine - no issues with the tonsils/adenoids and the eye doctor said that the tear ducts opened nicely.
Recovery, however, has been another story. This afternoon Bobby spiked a fever of 102. Dr Billings the ENT thinks it may be because she cleaned up an ear infection during the procedure. We iced him down and he seemed to do better.
My bigger concern is that Bobby couldn't maintain his oxygen saturations (they fell into the 70s) so he's got a cannula. He's not on a lot of oxygen (1.5 liters) but he does have some junk in his lungs. Hopefully its just a bit of mucuous that he can cough out, but of course, my mind immediately goes to the multiple lung collapses he's had post extubation. Hopefully he'll be spared that.
So far the pain has been OK with tylenol. He'll come home with a prescription for Tylenol with Codeine just in case, but Valerie will try to get him through tonight without it because it can lower saturations.
Mama V is on hospital duty tonight. I've already come home to try to get rested for what lies ahead. I'm trying not to jinx us but I'm having visions of Thanksgiving on 5 west. We'll know more in the morning.
Recovery, however, has been another story. This afternoon Bobby spiked a fever of 102. Dr Billings the ENT thinks it may be because she cleaned up an ear infection during the procedure. We iced him down and he seemed to do better.
My bigger concern is that Bobby couldn't maintain his oxygen saturations (they fell into the 70s) so he's got a cannula. He's not on a lot of oxygen (1.5 liters) but he does have some junk in his lungs. Hopefully its just a bit of mucuous that he can cough out, but of course, my mind immediately goes to the multiple lung collapses he's had post extubation. Hopefully he'll be spared that.
So far the pain has been OK with tylenol. He'll come home with a prescription for Tylenol with Codeine just in case, but Valerie will try to get him through tonight without it because it can lower saturations.
Mama V is on hospital duty tonight. I've already come home to try to get rested for what lies ahead. I'm trying not to jinx us but I'm having visions of Thanksgiving on 5 west. We'll know more in the morning.
The (Latest) Big Day
In less than an hour, Bobby was placed under general anesthesia, and had his tonsils and adenoids removed. Dr Billings, Bobby's ENT, just came out to give us the update - Bobby came through with flying colors. However, he did have a nasty left ear infection, which she drained, and now has a new ear tube in place to help with drainage. He'll be sent home with antibiotics (always a good idea for the Bubs) and Tylenol with Codeine. If all goes well, he'll be home some time tomorrow morning.
Right now, we're waiting on the opthamology procedure with Dr Hawke Yoon. I remember when we first met Dr Yoon - he skipped into the examination room. Also, it's nearly impossible to refer to him only as Dr Yoon - he is such a fun guy with such a great name - he will always be Doctor Hawke Yoon to me.
Right now, we're waiting on the opthamology procedure with Dr Hawke Yoon. I remember when we first met Dr Yoon - he skipped into the examination room. Also, it's nearly impossible to refer to him only as Dr Yoon - he is such a fun guy with such a great name - he will always be Doctor Hawke Yoon to me.
11/23/09
One Tough Truck!
Tomorrow is Bobby's TAD surgery (tonsils, adenoids, and eye ducts). Poor little guy is covered with scars from his journey thus far. I get sad thinking about what he's been through and yet am so thankful for the years that the surgeons have given him and us. So far they've rerouted his venous system and wrapped his stomach around his esophagus. How resilient is the human body? How amazing can modern medicine be?
10/30/09
10/4/09
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