We had another surgical procedure today with general anesthesia at St Luke's in Boise Idaho. Kyle got three teeth pulled! He was not impressed when he woke up!
This week was Sierras turn to go with us to the hospital and see it up close and personal. She liked breakfast in the cafeteria and the stop at Tree City afterwards. She was a good helper and comfort to Kyle too.
We shook things up today by having our trainer meet us at the hospital with Merlin after Kyle woke up. Merlin did very well for this first time in his service dog role in the hospital. I was quite proud of him and Kyle loved it too. It calmed Kyle down to have Merlin with him.
All in all, another exciting step forward in our journey. Now I'm hoping to go home and have everyone take a long nap!!! ;)
Spring
Our Treasures
Friday, June 29, 2012
Wednesday, June 27, 2012
Friday, June 22, 2012
Dip and lick
The hospital, again
> This morning Kyle is in the hospital in Logan Utah for ear tubes and a hearing test. Lauren came with us today. She is helping me with Kyle and gets an up close and personal look at what exactly happens at the hospital.
>
> Dr Bennion is going to do 2 weeks of Biaxin for possible mycoplasma bacterial infection in the neomalone and the non healing part of his ear. And use antifungal drops for the drainage in his right ear in a couple weeks. Then Kyle needs rechecked in about 6 weeks.
>
> Of all the strange twists, Kyles hearing test came back normal-mild loss at 25 decibels in his right ear (it's the one that had reconstruction surgery in January). No tube is recommended and no hearing aid is recommended for the previously profound loss ear! The doctors said its highly unusual for this much hearing loss to recover. They said its a priesthood miracle. It is possible to fluctuate a bit - this is just not typical. I'm not sure how to Wrap my head around that after all the heroic time and effort we have put into improving/saving his hearing. Left was still at moderate loss neurosensory. It's stable and we will continue to aid it. But we are going to try no tube for a few months and see what happens. Both the ENT and the audiologist expressed lots of confidence in my judgement about watching Kyles symptoms and getting medical care/intervention for Kyle as needed They said they wouldn't trust everyone so much but with me they do! It's a very nice compliment and a very heavy weight! What if I miss things? Eek it's a lot of responsibility!
>
> So yet another loop in the roller coaster of Kyles health and life. The extremes are so extreme. Total hearing loss in right ear one year ago now normal! What?? I'm afraid to believe it. What if it's a fluke? Is there a cyclic hearing loss disorder? ? Kind of like sierras when she was diagnosed got a hearing aide then on retest had normal hearing. The doctor said possibly. Also said it could be related to his immune deficiency...
What fun. I'm glad it's good news!
> Spring
>
> Dr Bennion is going to do 2 weeks of Biaxin for possible mycoplasma bacterial infection in the neomalone and the non healing part of his ear. And use antifungal drops for the drainage in his right ear in a couple weeks. Then Kyle needs rechecked in about 6 weeks.
>
> Of all the strange twists, Kyles hearing test came back normal-mild loss at 25 decibels in his right ear (it's the one that had reconstruction surgery in January). No tube is recommended and no hearing aid is recommended for the previously profound loss ear! The doctors said its highly unusual for this much hearing loss to recover. They said its a priesthood miracle. It is possible to fluctuate a bit - this is just not typical. I'm not sure how to Wrap my head around that after all the heroic time and effort we have put into improving/saving his hearing. Left was still at moderate loss neurosensory. It's stable and we will continue to aid it. But we are going to try no tube for a few months and see what happens. Both the ENT and the audiologist expressed lots of confidence in my judgement about watching Kyles symptoms and getting medical care/intervention for Kyle as needed They said they wouldn't trust everyone so much but with me they do! It's a very nice compliment and a very heavy weight! What if I miss things? Eek it's a lot of responsibility!
>
> So yet another loop in the roller coaster of Kyles health and life. The extremes are so extreme. Total hearing loss in right ear one year ago now normal! What?? I'm afraid to believe it. What if it's a fluke? Is there a cyclic hearing loss disorder? ? Kind of like sierras when she was diagnosed got a hearing aide then on retest had normal hearing. The doctor said possibly. Also said it could be related to his immune deficiency...
What fun. I'm glad it's good news!
> Spring
Sunday, June 3, 2012
Growing
Sierra has the same size feet as me! She is 10! (almost 11!) and Lauren is 5'4" tall, one inch shorter than me! How does this happen???
They are becoming beautiful young women! Im just not ready for that! Seems like just yesterday they were 4&6!
Spring
They are becoming beautiful young women! Im just not ready for that! Seems like just yesterday they were 4&6!
Spring
Reflections
"Chronic" means it doesn't end. As humans we adapt to situations we find ourselves in which allows us to survive the bad and the good. Surviving gives us strength to stand against the next challenge. And when we break we learn new things. It's called growth and it hurts. I've learned that the Gospel of Jesus Christ is a resource for these times, not an insurance policy against them. And the principals of faith and prayer and blessings and the plan of salvation really do bring comfort. They don't however erase the pain. That's where we show that we will remain true and faithful by enduring through whatever comes our way. Like Job. He was poetic and inspiring but it was miserable for him.
So what does the time between the crises look like? There is alot of work to pick up the peices after you shatter and strengthen your self for the next surge. There is a lot of work to comfort and strengthen the family, individually and collectively, before the next trial. There needs to be time to rest but I don't do so good on that because I'm always trying to make sure Kyle and the other kids are ok and make sure that all those who offered support know they are valued because I need them to be there next time too and I want to be reciprocal in my friendships. It's alot of crying, journaling, grieving and starting over. Recommitting to things like exercise, healthy eating, playing and laughing, relaxing, letting your nerves relax but never knowing when the next crisis will leap out at you. It's alot of doctor visits, lots of record keeping of symptoms, hours of medical care daily as Kyle heals from the last event. It's watching strange rashes delevop on your son and not know why, it's caring for a bottom that's bled everyday for three weeks and almost everyday for just over two months. It's watching and helping the girls through their anger and resentment of their brother. It's helping Dimitri with his insecurity because mom and Kyle were gone again for a long time. It's trying to maintain and strengthen a marriage that's taxed. It's recommitting to dog training so we can get his service dog credentials.
It's celebrating birthdays, grocery shopping, watching movies, snuggling, eating ice cream, hosting end of school parties, planning summer camps, remodeling houses, doing laundry and dishes. All the while trying not to remember that these medical issues are life threatening and Kyle may be called home without me expecting it. It's trying to focus on the joy and savor the precious times while living in the shadow of life altering possibilities.
It's called Life. ☺ Today the sun is bright and the air is clear. The birds are singing and the trees are glorious. Life goes on.
Spring
So what does the time between the crises look like? There is alot of work to pick up the peices after you shatter and strengthen your self for the next surge. There is a lot of work to comfort and strengthen the family, individually and collectively, before the next trial. There needs to be time to rest but I don't do so good on that because I'm always trying to make sure Kyle and the other kids are ok and make sure that all those who offered support know they are valued because I need them to be there next time too and I want to be reciprocal in my friendships. It's alot of crying, journaling, grieving and starting over. Recommitting to things like exercise, healthy eating, playing and laughing, relaxing, letting your nerves relax but never knowing when the next crisis will leap out at you. It's alot of doctor visits, lots of record keeping of symptoms, hours of medical care daily as Kyle heals from the last event. It's watching strange rashes delevop on your son and not know why, it's caring for a bottom that's bled everyday for three weeks and almost everyday for just over two months. It's watching and helping the girls through their anger and resentment of their brother. It's helping Dimitri with his insecurity because mom and Kyle were gone again for a long time. It's trying to maintain and strengthen a marriage that's taxed. It's recommitting to dog training so we can get his service dog credentials.
It's celebrating birthdays, grocery shopping, watching movies, snuggling, eating ice cream, hosting end of school parties, planning summer camps, remodeling houses, doing laundry and dishes. All the while trying not to remember that these medical issues are life threatening and Kyle may be called home without me expecting it. It's trying to focus on the joy and savor the precious times while living in the shadow of life altering possibilities.
It's called Life. ☺ Today the sun is bright and the air is clear. The birds are singing and the trees are glorious. Life goes on.
Spring
Saturday, June 2, 2012
Dancin' in the Rain, almost
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