Happy 4th of July! We hope you all had a safe and fun holiday!
Please don't fall out of your chair when you see that there is an update here!
I know... it's shocking! Life has been so busy... so busy in fact, I am not sure where to begin. Here is a quick (well... quick for me!) overview - - I can't believe it's been nearly two months since I last posted. Being a "single" parent has kept me just shy of a constant tailspin!
John: He is hanging in there at the academy. Being the "old guy" has had it's share of challenges - - not so much physically, but because he's been out of practice academically. Study habits and techniques are slowly starting to re-form. (Since they cram 2 1/2 years of curriculum hours into 6 months, I think it would prove challenging for most people.) Physically he is doing well... keeping up with the "young bucks" and I suspect surprising them that "grandpa" can actually keep up with them. As I predicted when he started 10 weeks ago, he has morphed back into his "twenty something" physique and looks quite a bit like he did when we met 12 years ago... hubba hubba!
Gracie: She is doing well overall... "well" is always a qualified statement with her. She had been on major house arrest during the horrible smoke conditions... and missed going outside so much. We are still trying to manage all of her GI issues and keep her tummy happy and hold the migraine cycles at bay - - as a result, she has had no weight gain and we are barely maintaining. Despite this, she has been gaining stamina and strength with her use of the gait trainer and can now do over eight laps around the main living areas of our home... pretty impressive considering we were stuck at three-four laps just a couple of months ago! She seems to be more willing to try new things without as much protest - - so long as she's feeling real well and tolerating the upright position. Check out these photos of her just "hangin' out" on Preston's tricycle!
Not such good news... we saw an ENT at Stanford whom I really liked, but whom delivered a pretty devastating reality. Unless Gracie can regain a functional swallow (which she appeared to have prior to her trach - - although it was probably borderline), she will not be able to be decannulated (get her trach out). She produces an excessive amount of saliva and doesn't swallow it... this affects the amount of suctioning required, explains a large part of her inability to tolerate a Passy Muir valve (speaking valve) and was not the news (obviously) that I was hoping for. She scoped Gracie right there in the office (my girl was a superstar and handled it better than most adults would) by going through her nose to look down at her vocal cords to check function. It was quite sobering... as she made the turn from her nose down to the back of her throat, it looked like a bubble bath - - just a ton of saliva and no vocal cords in sight. The secretions were so tenacious, they blocked any view of the cords - - a sign that her vocal cords are not functioning at their optimum level as they would naturally protect her airway and help keep some of the saliva below that area. There is a therapy (VitalStim) that uses electric stimulation to help train the muscles to swallow - - unfortunately, this is not an option for Miss Gracie because she has a pacemaker. We have previously tried Botox in her salivary glands to minimize her production of saliva, but that failed. We will continue to look for alternative treatment and ways to manage her saliva... and in the meantime, focus on all of the good things that are happening with her!
Preston: Oh my... he's a busy boy! From the moment he wakes up until the minute his eyes finally close... it's go, go, go! He is my diet/exercise plan!!! I could make a fortune "renting him out" as a workout plan for people! He's already signing (many are approximations, of course) about 30 signs and has a handful of oral words now, too. He always signs what he's saying which is so cute! His first word was "ball" just a couple of days after his 1st birthday (not counting his early babbling of "Dada" which is now said with great intent). He's since added "Papa," "apple," "hot," and "wow." ("Wow" was picked up during the diving and gymnastic Olympic Trials because Mommy kept saying it while watching the competitions on TV!) He is obsessed with balls & sports, motorcycles and nice cars (I have no idea how he knows a clunker from a sleek ride, but he does!) - - it's a strong genetic link to his daddy! He loves going to the park, especially our new water parks that have all kinds of sprinkler features! He climbs EVERYTHING and I am convinced is trying to see how many new gray hairs and near heart attacks he can give me in a day!
Please don't fall out of your chair when you see that there is an update here!
I know... it's shocking! Life has been so busy... so busy in fact, I am not sure where to begin. Here is a quick (well... quick for me!) overview - - I can't believe it's been nearly two months since I last posted. Being a "single" parent has kept me just shy of a constant tailspin!
John: He is hanging in there at the academy. Being the "old guy" has had it's share of challenges - - not so much physically, but because he's been out of practice academically. Study habits and techniques are slowly starting to re-form. (Since they cram 2 1/2 years of curriculum hours into 6 months, I think it would prove challenging for most people.) Physically he is doing well... keeping up with the "young bucks" and I suspect surprising them that "grandpa" can actually keep up with them. As I predicted when he started 10 weeks ago, he has morphed back into his "twenty something" physique and looks quite a bit like he did when we met 12 years ago... hubba hubba!
Gracie: She is doing well overall... "well" is always a qualified statement with her. She had been on major house arrest during the horrible smoke conditions... and missed going outside so much. We are still trying to manage all of her GI issues and keep her tummy happy and hold the migraine cycles at bay - - as a result, she has had no weight gain and we are barely maintaining. Despite this, she has been gaining stamina and strength with her use of the gait trainer and can now do over eight laps around the main living areas of our home... pretty impressive considering we were stuck at three-four laps just a couple of months ago! She seems to be more willing to try new things without as much protest - - so long as she's feeling real well and tolerating the upright position. Check out these photos of her just "hangin' out" on Preston's tricycle!
Not such good news... we saw an ENT at Stanford whom I really liked, but whom delivered a pretty devastating reality. Unless Gracie can regain a functional swallow (which she appeared to have prior to her trach - - although it was probably borderline), she will not be able to be decannulated (get her trach out). She produces an excessive amount of saliva and doesn't swallow it... this affects the amount of suctioning required, explains a large part of her inability to tolerate a Passy Muir valve (speaking valve) and was not the news (obviously) that I was hoping for. She scoped Gracie right there in the office (my girl was a superstar and handled it better than most adults would) by going through her nose to look down at her vocal cords to check function. It was quite sobering... as she made the turn from her nose down to the back of her throat, it looked like a bubble bath - - just a ton of saliva and no vocal cords in sight. The secretions were so tenacious, they blocked any view of the cords - - a sign that her vocal cords are not functioning at their optimum level as they would naturally protect her airway and help keep some of the saliva below that area. There is a therapy (VitalStim) that uses electric stimulation to help train the muscles to swallow - - unfortunately, this is not an option for Miss Gracie because she has a pacemaker. We have previously tried Botox in her salivary glands to minimize her production of saliva, but that failed. We will continue to look for alternative treatment and ways to manage her saliva... and in the meantime, focus on all of the good things that are happening with her!
Preston: Oh my... he's a busy boy! From the moment he wakes up until the minute his eyes finally close... it's go, go, go! He is my diet/exercise plan!!! I could make a fortune "renting him out" as a workout plan for people! He's already signing (many are approximations, of course) about 30 signs and has a handful of oral words now, too. He always signs what he's saying which is so cute! His first word was "ball" just a couple of days after his 1st birthday (not counting his early babbling of "Dada" which is now said with great intent). He's since added "Papa," "apple," "hot," and "wow." ("Wow" was picked up during the diving and gymnastic Olympic Trials because Mommy kept saying it while watching the competitions on TV!) He is obsessed with balls & sports, motorcycles and nice cars (I have no idea how he knows a clunker from a sleek ride, but he does!) - - it's a strong genetic link to his daddy! He loves going to the park, especially our new water parks that have all kinds of sprinkler features! He climbs EVERYTHING and I am convinced is trying to see how many new gray hairs and near heart attacks he can give me in a day!
We discovered his obsessive love of watermelon today, fittingly on the Fourth of July- - check him out!
2 comments:
These are absolutely lovely photos of your blue eyed boy. Beautifully shot busy mummy! Cx
and how do I make these collages myself?
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