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.
12/18/09
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
9/28/09
The List
I read an article today about Rosanne Cash's latest album - The List. When she was 18 her dad gave her a list of the 100 greatest country and western songs of all time. She just recorded an album with 13 of those songs.
I love the story of how the album came to be. To me, music is one of the greatest gifts we can give our children. Of course, few of us can aspire to the legacy of Johnny Cash, and in my case, I'm not even in tune enough to teach Bobby how to sing on key. But I can share my love of music.
My joy in music stems from childhood, so its only fair to pass on the tradition. I remember riding around in my dad's car listening to the local country station. We listened to Merle Haggard, Loretta Lynn, George Jones, all the greats. No wonder then that Bobby spent many of his early days - days when he was weak from congestive heart failure - listening to the classic country station on TV. He didn't care much for the other stations, but the old time country soothed him to sleep.
My mom listened to classical music, something I never understood. What was the point of music without words? But she gave me a different kind of musical gift. One year during Christmas mass she noticed that I wasn't singing and asked me why. "I can't sing," I told her.
"God gave you that voice and He deserves to hear it," she answered.
That was a revelation. God gave me the voice and I should use it? Not worry if my voice is flat? Excellent! I started singing. I sang off key. I sang the wrong words to songs. But I sang. All the time.
When my parents died, music was my solace. I spent the summer after my dad died playing "Fire and Rain" and "Far Side Banks of Jordan" over and over and over again. When my mom died I played "Angel" by Sarah McLachlan. Over and over and over again.
So, its no surprise that, upon learning that Bobby had a heart condition and most likely had Down Syndrome, I turned to music. Not knowing what else to do for my boy I sang this song into Valerie's tummy every night:
Twinkle Twinkle Little Prince
I loved you when God made you and I'll love you ever since
You're the apple of your mama's eye
You're the golden son, my sweetie pie
Twinkle Twinkle Little Prince
I loved you when God made you and I'll love you ever since.
I spent days making Bobby a mixed tape to welcome him into the world, and, not coincidentally, introduced him to the music his mamas love. These songs expressed the things I wanted Bobby to know before he came into the world - that he was perfect just as he was; that he was coming to mamas who had fierce love for him. I wanted him to know that he was welcome in this world; that while it wouldn't be easy to have Down Syndrome, in the end, God and his mamas would watch over him. And I wanted him see the beauty of his own little spirit - the light that was coming to change our world. We played it in the car in the months leading up to his birth and we play it to this day.
River Deep, Mountain High - Tina Turner
Sweet Home Chicago - Robert Johnson
Don't You Worry 'Bout a Thing - Stevie Wonder
You Were Made For Me - Sam Cooke
Everyday People - Sly and the Family Stone
Loves me Like a Rock - Allison Krauss & the Cox Family
Shine - Dolly Parton
Keep Me God - Iris Dement
Something's Gotta Hold on Me - Etta James
Wonderful World, Beautiful People - Jimmy Cliff
Whole Lotta Shakin' Goin' On - Big Maybelle
To Zion - Lauryn Hill
Bridging the Gap - Nas
Respect Yourself - Staple Singers
Sweet Thing - Van Morrison
Everybody Wants to Be a Cat
I spent the first scary year of Bobby's life singing. During the first few weeks, when he was gassy and couldn't get relief, I wrote this song for him, singing and swaying until he fell asleep:
Bobby Bear
Bobby Bear
It's no fun with gas in there
Go ahead and make a fart
You can't finish until you start
I sang to him through many a medical procedure, trying to take his mind off the indignity of the echocardiogram wand or the probing stethoscope. I sang familiar tunes with new words, words to replace lyrics I didn't like, or words that simply were more appropriate for the occasion:
Rock a bye baby, in the tree top
When the wind blows, the cradle will rock
When the bow breaks, nothing happens at all
Because mama and mama will not let you fall
I sang because I didn't know what else to do. I just wanted him to know that mama was there, even when he was stuck full of needles and tubes, even when I couldn't hold him. And the beautiful, magical thing of it is, it worked. He and I have one very special song, a song I have sung to him thousands of times. It always soothes him.
You are my sunshine
My s-o-n shine
You make me happy
oh, every day
I hope you know dear
that I adore you
and in my heart
I hope you know you'll stay
The other night, dear
as I lay sleeping
I dreamt I held you
in my arms
when I awoke, dear
my dream came true, dear
I'll hold you tight
try to protect you from all harm
Now, as he gets bigger and stronger, Bobby shows us that his love for music rivals my own. He plays the drums; he shakes the maracas; he shakes his shakers; he rings bells. He and I take a music class once a week. Each night when I pick him up from daycare we listen to the class CD. Driving home I sing and he yells and giggles, singing along too. Neither one of us in tune and neither one of us cares. It's so rock and roll I can hardly stand it.
I love the story of how the album came to be. To me, music is one of the greatest gifts we can give our children. Of course, few of us can aspire to the legacy of Johnny Cash, and in my case, I'm not even in tune enough to teach Bobby how to sing on key. But I can share my love of music.
My joy in music stems from childhood, so its only fair to pass on the tradition. I remember riding around in my dad's car listening to the local country station. We listened to Merle Haggard, Loretta Lynn, George Jones, all the greats. No wonder then that Bobby spent many of his early days - days when he was weak from congestive heart failure - listening to the classic country station on TV. He didn't care much for the other stations, but the old time country soothed him to sleep.
My mom listened to classical music, something I never understood. What was the point of music without words? But she gave me a different kind of musical gift. One year during Christmas mass she noticed that I wasn't singing and asked me why. "I can't sing," I told her.
"God gave you that voice and He deserves to hear it," she answered.
That was a revelation. God gave me the voice and I should use it? Not worry if my voice is flat? Excellent! I started singing. I sang off key. I sang the wrong words to songs. But I sang. All the time.
When my parents died, music was my solace. I spent the summer after my dad died playing "Fire and Rain" and "Far Side Banks of Jordan" over and over and over again. When my mom died I played "Angel" by Sarah McLachlan. Over and over and over again.
So, its no surprise that, upon learning that Bobby had a heart condition and most likely had Down Syndrome, I turned to music. Not knowing what else to do for my boy I sang this song into Valerie's tummy every night:
Twinkle Twinkle Little Prince
I loved you when God made you and I'll love you ever since
You're the apple of your mama's eye
You're the golden son, my sweetie pie
Twinkle Twinkle Little Prince
I loved you when God made you and I'll love you ever since.
I spent days making Bobby a mixed tape to welcome him into the world, and, not coincidentally, introduced him to the music his mamas love. These songs expressed the things I wanted Bobby to know before he came into the world - that he was perfect just as he was; that he was coming to mamas who had fierce love for him. I wanted him to know that he was welcome in this world; that while it wouldn't be easy to have Down Syndrome, in the end, God and his mamas would watch over him. And I wanted him see the beauty of his own little spirit - the light that was coming to change our world. We played it in the car in the months leading up to his birth and we play it to this day.
River Deep, Mountain High - Tina Turner
Sweet Home Chicago - Robert Johnson
Don't You Worry 'Bout a Thing - Stevie Wonder
You Were Made For Me - Sam Cooke
Everyday People - Sly and the Family Stone
Loves me Like a Rock - Allison Krauss & the Cox Family
Shine - Dolly Parton
Keep Me God - Iris Dement
Something's Gotta Hold on Me - Etta James
Wonderful World, Beautiful People - Jimmy Cliff
Whole Lotta Shakin' Goin' On - Big Maybelle
To Zion - Lauryn Hill
Bridging the Gap - Nas
Respect Yourself - Staple Singers
Sweet Thing - Van Morrison
Everybody Wants to Be a Cat
I spent the first scary year of Bobby's life singing. During the first few weeks, when he was gassy and couldn't get relief, I wrote this song for him, singing and swaying until he fell asleep:
Bobby Bear
Bobby Bear
It's no fun with gas in there
Go ahead and make a fart
You can't finish until you start
I sang to him through many a medical procedure, trying to take his mind off the indignity of the echocardiogram wand or the probing stethoscope. I sang familiar tunes with new words, words to replace lyrics I didn't like, or words that simply were more appropriate for the occasion:
Rock a bye baby, in the tree top
When the wind blows, the cradle will rock
When the bow breaks, nothing happens at all
Because mama and mama will not let you fall
I sang because I didn't know what else to do. I just wanted him to know that mama was there, even when he was stuck full of needles and tubes, even when I couldn't hold him. And the beautiful, magical thing of it is, it worked. He and I have one very special song, a song I have sung to him thousands of times. It always soothes him.
You are my sunshine
My s-o-n shine
You make me happy
oh, every day
I hope you know dear
that I adore you
and in my heart
I hope you know you'll stay
The other night, dear
as I lay sleeping
I dreamt I held you
in my arms
when I awoke, dear
my dream came true, dear
I'll hold you tight
try to protect you from all harm
Now, as he gets bigger and stronger, Bobby shows us that his love for music rivals my own. He plays the drums; he shakes the maracas; he shakes his shakers; he rings bells. He and I take a music class once a week. Each night when I pick him up from daycare we listen to the class CD. Driving home I sing and he yells and giggles, singing along too. Neither one of us in tune and neither one of us cares. It's so rock and roll I can hardly stand it.
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