I'm melting. Today is supposed to be the hottest day ever in Seattle. Woo-hoo. This heat needs to go to Oklahoma where it belongs. Where's my marine layer overcast drizzle??? Places where it's this hot in the summer have air conditioning in the homes--we only have heat, because it's usually cold and miserable here. Someone slap me the next time I complain about the rain.
Yesterday I was all prepared to take some good pictures of Annie in her hippotherapy, but they called and cancelled because the horses were out back sipping mint juleps behind the barn. So we spent most of the day driving around in the van that has air conditioning. Maybe today we'll go to the mall. Hopefully Annie won't have any seizures within running distance of screaming ladies.
Stay cool.
Jean
He bestows rain on the earth; he sends water upon the countryside. Job 5:10
Wednesday, July 29, 2009
Sunday, July 26, 2009
Confessions of a Grandmother-to-Be
Yes, it's true. In about a month, I am officially going to be a Grandma. This will come as a surprise to the person who asked me if I was Olivia's grandmother 2 weeks after I had given birth to her--14 years ago. It will also shock the clerk at the garden center who asked if I qualified for the senior discount when I was 46. It will make total sense to every professional who meets Annie and me for the first time and asks in the exam room, "And you're her........??" "Right, I'm her MOTHER," I say politely through clenched teeth.
But I'm okay with being a grandmother--heaven knows I've been masquerading as one for at least 10 years. I have to tell you, though, I don't know what to be called, and who decides that anyway? The first grandchild? Better decide now. So I was looking at the official grandmother names website, and here were some of the options: Buh-be, Meemaw, Nana Barbie, Oma, Ninny, Gammie, and Ya-Ya. Ga-Ga was also listed, but somehow I don't think Grandma Ga-Ga would work.
Anyway--very soon we'll welcome Peter & Cris' first baby girl into the world. And I figure she can call me anything she wants.
Jean
For you created my inmost being; you knit me together in my mother's womb. Psalm 139:13
But I'm okay with being a grandmother--heaven knows I've been masquerading as one for at least 10 years. I have to tell you, though, I don't know what to be called, and who decides that anyway? The first grandchild? Better decide now. So I was looking at the official grandmother names website, and here were some of the options: Buh-be, Meemaw, Nana Barbie, Oma, Ninny, Gammie, and Ya-Ya. Ga-Ga was also listed, but somehow I don't think Grandma Ga-Ga would work.
Anyway--very soon we'll welcome Peter & Cris' first baby girl into the world. And I figure she can call me anything she wants.
Jean
For you created my inmost being; you knit me together in my mother's womb. Psalm 139:13
Thursday, July 23, 2009
Tattoo Theology
As parents of a daughter with special needs, Bill & I try to be aware of how living with a disabled sibling affects our other children. Annie's brothers and sister are called on to assist with her care every day, and no doubt experience the same emotions as any caregiver: love, frustration, exhaustion, guilt and burn-out. As parents, we feel a responsibility to not only to care for our disabled child, but also to help our other children cope, adjust and find purpose in their new role as siblings of a disabled person.
During the first year after Annie's brain injury, we scheduled frequent breaks away with our older kids--times to decompress, ask questions, pray, and often, just cry with them. We were intentional about guiding the conversations while we ran errands, or took them out for ice cream or a bite to eat. I remember sitting in the van trying to help one of them understand that although this horrible thing just happened to their sister, God still loved them and still could be trusted. Tough conversations.
You see, the reality with severe brain injury is that the old person you knew is gone and, confusingly, their body is inhabited by a different person. So it's common to feel an overwhelming sense of loss that the old person is gone, but you don't have the closure as with the death of a loved one. So you can feel a lot of guilt, because you're thankful that they are alive, but sad that their body is now inhabited by this new stranger.
These are some of the feelings we felt, and some of the feelings our kids felt but had a hard time expressing. Fortunately, at more than two years post-injury, much of the grief has receded into the background. What has taken its place is the daily realities of caregiving and living with a medically-complex child. But every once in awhile, what is going on in the minds of one of Annie's siblings rises to the surface and catches me by surprise.
For instance, our fourth son, David, turned 18 this month, and being 18, was now legally able to get a tattoo. So he decided to get one. Now, I know what you're thinking. And I don't have any desire to write on my body either, I write on the computer. But that's just me. Anyway, this week he came home and showed us his artwork. On his left shoulder is Annie's name, and "Romans 8:38," a reference to a verse in the Bible that says, "For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Then he explained, "I know that no matter what happened in the past or happens in the future to Annie, God still loves us."
Now who is going to argue with that?
Jean
For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. Romans 8:38-39
During the first year after Annie's brain injury, we scheduled frequent breaks away with our older kids--times to decompress, ask questions, pray, and often, just cry with them. We were intentional about guiding the conversations while we ran errands, or took them out for ice cream or a bite to eat. I remember sitting in the van trying to help one of them understand that although this horrible thing just happened to their sister, God still loved them and still could be trusted. Tough conversations.
You see, the reality with severe brain injury is that the old person you knew is gone and, confusingly, their body is inhabited by a different person. So it's common to feel an overwhelming sense of loss that the old person is gone, but you don't have the closure as with the death of a loved one. So you can feel a lot of guilt, because you're thankful that they are alive, but sad that their body is now inhabited by this new stranger.
These are some of the feelings we felt, and some of the feelings our kids felt but had a hard time expressing. Fortunately, at more than two years post-injury, much of the grief has receded into the background. What has taken its place is the daily realities of caregiving and living with a medically-complex child. But every once in awhile, what is going on in the minds of one of Annie's siblings rises to the surface and catches me by surprise.
For instance, our fourth son, David, turned 18 this month, and being 18, was now legally able to get a tattoo. So he decided to get one. Now, I know what you're thinking. And I don't have any desire to write on my body either, I write on the computer. But that's just me. Anyway, this week he came home and showed us his artwork. On his left shoulder is Annie's name, and "Romans 8:38," a reference to a verse in the Bible that says, "For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Then he explained, "I know that no matter what happened in the past or happens in the future to Annie, God still loves us."
Now who is going to argue with that?
Jean
For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. Romans 8:38-39
Tuesday, July 21, 2009
Thy Will Be Done
There's a song we sang at church on Sunday that I wanted to share with you. I looked it up and found it was written by a woman in England who spent most of her life as an invalid, and who often wondered what God could do through her because of her inability to do anything "significant."
It's interesting how God often does amazing things through people who have been isolated from the busy-ness of normal, everyday life: Joseph spent 13 years in prison before assuming a 2nd-in-command position over the known world, Moses spent 40 years in the desert before being called out to lead Israel out of Egypt, and Daniel was taken captive as a young boy from his home in Jerusalem to Babylon, where he became a top advisor in 3 successive kingdoms.
And some people live in isolation their entire lives, and we won't know the scope of God's work through them until we get to heaven. Charlotte Elliott was an invalid for most of her adult life, but God used her to write this hymn, and the hymn, "Just As I Am." What is that saying, It's not your ability, but your availability that determines what God can do through you.
My God and Father! while I stray
Far from my home in life’s rough way,
Oh! teach me from my heart to say,“Thy will be done!”
Though dark my path, and sad my lot,
Let me “be still,” and murmur not,
Or breathe the prayer divinely taught,
“Thy will be done!”
What though in lonely grief I sigh,
For friends beloved, no longer nigh,
Submissive still would I reply,
“Thy will be done!”
If Thou shouldst call me to resign
What most I prize, it ne’er was mine;
I only yield Thee what was Thine;
“Thy will be done!”
Should pining sickness waste away,
My life in premature decay,
My Father! still I strive to say,
“Thy will be done!”
If but my fainting heart be blest
With Thy sweet Spirit for its guest,
My God! to Thee I leave the rest--
“Thy will be done!”
Renew my will from day to day,
Blend it with Thine, and take away
All now that makes it hard to say,
“Thy will be done!”
Then when on earth I breathe no more
The prayer oft mixed with tears before,
I’ll sing upon a happier shore,
“Thy will be done!”
Charlotte Elliott (1789-1871)
"Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus throughout all ages, world without end. Amen" Ephesians 3:20-21
It's interesting how God often does amazing things through people who have been isolated from the busy-ness of normal, everyday life: Joseph spent 13 years in prison before assuming a 2nd-in-command position over the known world, Moses spent 40 years in the desert before being called out to lead Israel out of Egypt, and Daniel was taken captive as a young boy from his home in Jerusalem to Babylon, where he became a top advisor in 3 successive kingdoms.
And some people live in isolation their entire lives, and we won't know the scope of God's work through them until we get to heaven. Charlotte Elliott was an invalid for most of her adult life, but God used her to write this hymn, and the hymn, "Just As I Am." What is that saying, It's not your ability, but your availability that determines what God can do through you.
My God and Father! while I stray
Far from my home in life’s rough way,
Oh! teach me from my heart to say,“Thy will be done!”
Though dark my path, and sad my lot,
Let me “be still,” and murmur not,
Or breathe the prayer divinely taught,
“Thy will be done!”
What though in lonely grief I sigh,
For friends beloved, no longer nigh,
Submissive still would I reply,
“Thy will be done!”
If Thou shouldst call me to resign
What most I prize, it ne’er was mine;
I only yield Thee what was Thine;
“Thy will be done!”
Should pining sickness waste away,
My life in premature decay,
My Father! still I strive to say,
“Thy will be done!”
If but my fainting heart be blest
With Thy sweet Spirit for its guest,
My God! to Thee I leave the rest--
“Thy will be done!”
Renew my will from day to day,
Blend it with Thine, and take away
All now that makes it hard to say,
“Thy will be done!”
Then when on earth I breathe no more
The prayer oft mixed with tears before,
I’ll sing upon a happier shore,
“Thy will be done!”
Charlotte Elliott (1789-1871)
"Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus throughout all ages, world without end. Amen" Ephesians 3:20-21
Thursday, July 16, 2009
Another day, another theory
Before I begin with another edition from the chronicles of Annie-land, I need to remind you that we do have a life beyond medicine, poop, and hydrocortisone. Sometimes it's not much more of a life, but I felt like I needed to put that out there, in case you have been thinking I'm too one-dimensional. Like, for instance, on the way to take Annie to school yesterday, I stopped to put gas in the van, and when I heard the clunk of the nozzle shutting off, I pulled the nozzle out of the gas tank. Unfortunately, the nozzle that I heard shut off was in the truck next to mine. Consequently, when I pulled the nozzle out of my gas tank, gasoline sprayed all over my jeans, my hands, my shoes, the concrete, pretty much everything within a 12 ft radius of the van. The guy with the truck next to me pretended not to notice. And, at that moment, I was thinking about something other than medicine, poop, and hydrocortisone. Unfortunately, I can't share with you what I was thinking, because you would be convinced that I had lost my salvation. I briefly considered going back home to change, but we were late, and summer school is only an hour and a half long, so I got back in the van and rolled down the windows. Driving up to Annie's school on the freeway, I was thinking about the probability of getting cancer from the carcinogenic fumes rising from my clothing, and what the likelihood would be of my van blowing up in the event of a collision. So I do think of other things besides medicine, poop and hydrocortisone.
Now, about my other theory: The "Test" from the last post about Annie needing more hydro is only partially correct. My latest (and last) idea is that there is a link between Addison's, brain injury, seizures, slow motility, throwing up, and needing extra hydrocortisone. It's actually a circle. On any given day, we could be camped on one of those issues. Some days, there are two things the demand our attention. Some days all of them. The common thread is that there is never a clear cause and effect, and there is never a clear solution. It is more like degrees of managing of never-ending cycle of symptoms, medicines, and side-effects. So that's it. My theory is that there is no solution--only managing.
And even as Annie struggles with these things, her cognitive abilities continue to improve. She turns the pages of the little board books I read to her, and she seems to prefer books that are a little more advanced than the "Brown Bear" story I've been reading to her for months. The fact that she's getting tired of stuff and wants something new is a great sign. Her speech teacher at school has noticed this too, so we'll be making adjustments next year to keep challenging her cognitively.
Now if we could just teach her mom how to pump gas, we'll be in business.
Jean
Now, about my other theory: The "Test" from the last post about Annie needing more hydro is only partially correct. My latest (and last) idea is that there is a link between Addison's, brain injury, seizures, slow motility, throwing up, and needing extra hydrocortisone. It's actually a circle. On any given day, we could be camped on one of those issues. Some days, there are two things the demand our attention. Some days all of them. The common thread is that there is never a clear cause and effect, and there is never a clear solution. It is more like degrees of managing of never-ending cycle of symptoms, medicines, and side-effects. So that's it. My theory is that there is no solution--only managing.
And even as Annie struggles with these things, her cognitive abilities continue to improve. She turns the pages of the little board books I read to her, and she seems to prefer books that are a little more advanced than the "Brown Bear" story I've been reading to her for months. The fact that she's getting tired of stuff and wants something new is a great sign. Her speech teacher at school has noticed this too, so we'll be making adjustments next year to keep challenging her cognitively.
Now if we could just teach her mom how to pump gas, we'll be in business.
Jean
Monday, July 13, 2009
Test
One of the reasons I blog is so that anyone who has a kid with Addison's, or a seizure disorder, or a brain injury, or blond hair and blue eyes--can read about our struggles, compare their situation to ours and hopefully get some helpful information. With that in mind, let me share another update:
Yesterday Annie had only two detectable seizures--a huge improvement from the day before. But she was still on the brink of vomiting all day, and in fact, threw up twice. Because she had no other symptoms (like a fever, cold, etc.) to make me think she needed more hydrocortisone--the medicine for her Addison's--I thought that the nausea was caused by Banzel, the new medicine for her seizures.
And more background--the last few days she's been getting up around 4 AM gagging herself. So every morning with her regular medicines and regular dose of hydrocortisone, we had been treating her with Zofran (an anti-nausea drug). But, in the last few days, even Zofran hasn't worked to keep her nausea at bay.
Now, for those of you with Addison's, you know that sometimes when you're low on hydrocortisone, you need more so you can sleep better. It's counterintuitive, because for the rest of us, steroids can keep us up all night. But for people with Addison's, the right dose of the steroid hydrocortisone can actually help them sleep. So, last night, I thought, I'll give her a little more hydrocortisone at bedtime, and see if it helps her not wake up at 4 AM, gagging herself. Voila--here it is 7 AM, and she's still asleep.
Now although I have no idea why she might need more hydrocortisone, because, again, she has no outward symptoms of illness, I'm going to give her double dose today and see if: a. It helps her stop being so nauseated and gaggy, and b. Helps eliminate any seizure activity.
Thanks again for checking in with us this morning, and again, thanks to those of you who pray for us. It helps so much.
Jean
Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul. Psalm 143:8
Yesterday Annie had only two detectable seizures--a huge improvement from the day before. But she was still on the brink of vomiting all day, and in fact, threw up twice. Because she had no other symptoms (like a fever, cold, etc.) to make me think she needed more hydrocortisone--the medicine for her Addison's--I thought that the nausea was caused by Banzel, the new medicine for her seizures.
And more background--the last few days she's been getting up around 4 AM gagging herself. So every morning with her regular medicines and regular dose of hydrocortisone, we had been treating her with Zofran (an anti-nausea drug). But, in the last few days, even Zofran hasn't worked to keep her nausea at bay.
Now, for those of you with Addison's, you know that sometimes when you're low on hydrocortisone, you need more so you can sleep better. It's counterintuitive, because for the rest of us, steroids can keep us up all night. But for people with Addison's, the right dose of the steroid hydrocortisone can actually help them sleep. So, last night, I thought, I'll give her a little more hydrocortisone at bedtime, and see if it helps her not wake up at 4 AM, gagging herself. Voila--here it is 7 AM, and she's still asleep.
Now although I have no idea why she might need more hydrocortisone, because, again, she has no outward symptoms of illness, I'm going to give her double dose today and see if: a. It helps her stop being so nauseated and gaggy, and b. Helps eliminate any seizure activity.
Thanks again for checking in with us this morning, and again, thanks to those of you who pray for us. It helps so much.
Jean
Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul. Psalm 143:8
Friday, July 10, 2009
Three steps back...
A week or so ago I was feeling overwhelmed at all the stuff I needed to do to push Annie along, because she was on a wave of feeling good. That wave is gone. We're back to square one, or minus one, as she is struggling again with nausea and vomiting. Annie had multiple seizures today, and threw up 3 times.
I think we're going to have to wean down on the Banzel, which I think is causing the vomiting...and I'm not sure what we'll try next. Something, I'm sure. But it is the nature of Lennox-Gastaut seizures to elude easy solutions. We were hoping that this new drug, which specifically targets her type of seizures, would work. It's discouraging that the side effect of nausea/vomiting is so severe in Annie that we may need to discontinue the drug.
Chronic illness is the pits.
Jean
Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths. Proverbs 3:5-6
I think we're going to have to wean down on the Banzel, which I think is causing the vomiting...and I'm not sure what we'll try next. Something, I'm sure. But it is the nature of Lennox-Gastaut seizures to elude easy solutions. We were hoping that this new drug, which specifically targets her type of seizures, would work. It's discouraging that the side effect of nausea/vomiting is so severe in Annie that we may need to discontinue the drug.
Chronic illness is the pits.
Jean
Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths. Proverbs 3:5-6
Wednesday, July 8, 2009
Riding the Range
Annie had her first official hippotherapy yesterday. Her therapist was impressed that she was sitting up tall for the whole half hour, and thankfully, didn't have any seizures while she was on the horse. Yippeeyiyokayea. Now, I did remember to bring the video camera, and as soon as I can get my producer to put it up here, you'll be able to see it too.
I do have a few updates for you:
1. We went to the dentist last Monday. She showed me some tricks to get the toothbrush into Annie's mouth, and to brush her teeth while I'm in there. Most of the ideas require 3 people to accomplish. But she did say I was doing a good job. Yeah, me and Olivia. ;)
2. We went to the neurodevelopmental clinic today to discuss ideas on how to break Annie of the annoying habit of intentionally gagging herself. They all involve "redirecting" Annie away from the behavior.
3. We're going to the nephrology clinic tomorrow to find out why Annie has protein and glucose in her "output."
4. The seizures were down to one or two a day until today, when she had about 6. I wish I could tell you why she had so many, but I don't know. We're off the zonisimide completely, and probably will go up again on the Banzel, if we can do it without causing too much nausea.
5. Annie also started summer school this week. And did I mention that it's David's 18th birthday today?
I remind myself often that many people in the medical profession do these things all day for a living--and aren't I lucky that I can do it and get a load of laundry done at the same time?
Annie's asleep now. Time to rest so I can be ready for another day.
Jean
And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. 2 Corinthians 12:9
I do have a few updates for you:
1. We went to the dentist last Monday. She showed me some tricks to get the toothbrush into Annie's mouth, and to brush her teeth while I'm in there. Most of the ideas require 3 people to accomplish. But she did say I was doing a good job. Yeah, me and Olivia. ;)
2. We went to the neurodevelopmental clinic today to discuss ideas on how to break Annie of the annoying habit of intentionally gagging herself. They all involve "redirecting" Annie away from the behavior.
3. We're going to the nephrology clinic tomorrow to find out why Annie has protein and glucose in her "output."
4. The seizures were down to one or two a day until today, when she had about 6. I wish I could tell you why she had so many, but I don't know. We're off the zonisimide completely, and probably will go up again on the Banzel, if we can do it without causing too much nausea.
5. Annie also started summer school this week. And did I mention that it's David's 18th birthday today?
I remind myself often that many people in the medical profession do these things all day for a living--and aren't I lucky that I can do it and get a load of laundry done at the same time?
Annie's asleep now. Time to rest so I can be ready for another day.
Jean
And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. 2 Corinthians 12:9
Sunday, July 5, 2009
The Day After
We survived another 4th of July. I say that, not because I'm ungrateful for living in the US of A, because I truly am, but because the people who live in my neighborhood have an insatiable need for blowing things up until all hours of the night. They started around 4 PM Thursday with the legal pyrotechnics, but by 7 PM last night, the bombs from the reservation came out. At 8 PM, the firetruck came up the street. How it was able to navigate through the yellow smoke, is a mystery. I put Annie to bed around 8:30, and she promptly fell asleep, even though the pictures were dropping off her bedroom walls. At about 10 PM, the smell of sulphur started closing off my bronchials, so I shut the windows. At 1 AM, the last explosive went off. I know, I should count myself lucky--you lit off your last one at 1:30.
Next year, I'm praying for rain.
Jean
Next year, I'm praying for rain.
Jean
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