Back to School

I think Back to School needs to quit masquerading and identify itself as the excessively materialistic holiday season that it is. Every year it seems like I spend as much in the two weeks leading up to the first day of school as I do for Christmas. All the ads come out right after July 4th, and it's like I get sucked into a vortex of plaid Jansports and new Chuck Taylor's. Then there's the ASB cards, sports fees--and we haven't even begun getting pens and paper! Fortunately, most of the Sullivan children are gainfully employed, and are therefore buying their own Chuck Taylor's. And, fortunately, Annie hasn't asked for a plaid Jansport--yet.

The upside, of course, is that law and order is about to return to our house. The lazy days of sleeping in are almost gone and in their place will be children walking out the door at dark-thirty looking like zombies. I will make my annual resolution to get up early and fix them a healthy breakfast like oatmeal, or bacon and eggs, which will last approximately one and half mornings, after which they will return to their staple diet of pop tarts and Fruity Pebbles.

Annie will be in full days this year, too. We were driving in the neighborhood of her school this afternoon, and when she looked out the window at the building, she started chattering quite purposefully, and gave me a big smile when I told her that "pretty soon, you'll be going back to see Teacher Amanda and Nurse Moira." I'd say she's excited.

I will admit that I am anxious to catch up on projects that have been idling for 2+ years. Organizing, cleaning, painting--it's almost heaven just thinking about it. Just imagining uninterrupted hours to do a load of laundry, dry it, fold it, and put it away...it's like a dream come true. And yes, I am pathetic. And I live with a little girl who requires 24 hours a day/7 days a week care, and who would rather throw up than have her mommy out of sight for more than 30 seconds. Raising our 6 kids did not even begin to prepare me for what we've been called upon to do in the last 2 years. I keep telling myself it's just a season. A really long one.

But enough of that. As of today, Annie is still doing well with the increased dose of hydrocortisone. Her seizures, however, are still in the 4+/day range, so we'll have to start working on those again. I'm almost afraid, though, of rocking the boat with any seizure medicine changes, because I am enjoying this time of relative stability. But I know it's just a season, just like Back to School.

Jean

To everything there is a season,

A time for every purpose under heaven. Ecclesiastes 3:1

End of Summer

Hard to believe that summer is almost over, but I figure this is a good time to assess where we are, where we've been, and where we're going in Annie-land. Looking back over the last two months, we probably packed in too many therapy and doctor appointments but the good results make the frenetic activity worth it. You can read the details here, or do what I do and skip down to the bottom line.

Where we've been

Addison's: We started the Fludrocortisone a few weeks ago. It helps her body regulate fluids so that she doesn't look so dehydrated and gaunt. So far I think it's working, and we're controlling her blood pressure with another med. (Remember, she's a Rubik's cube, and when we change one thing, we usually need to change something else.) Also, after meeting with Annie's endocrine doctor last week, we increased her daily hydrocortisone dose which also seems to help her overall sense of well being. In fact, I noticed when I got home from my time away with Olivia this past weekend that Annie seemed to have perked up a lot. So I figure it's either the increase dose of hydrocortisone or her dad does a much better job of caregiving and probably needs me to take more vacations.

Constraint Therapy: Three weeks of constraint therapy have brought about some nice improvement on her initiation and use of her right arm and hand. Our job is to build on what her therapists began. Things Take Time.

Seizures: Annie is relatively stable and for that we are very thankful. Her seizures average about 2-4 a day, and are brief blips in her awareness. The downside is that any seizure is really too many, so we'll continue to adjust her meds with the goal of zero seizures. And then someday maybe I'll get her a pony.

Where we're going

Gastro: We're going into GI clinic this week to try to sort out her motility issues. She was recently tested for celiac--a common comorbid condition to Addison's--and we'll have the results back from that soon. She isn't vomiting nearly as often as she had been--probably because she is more hydrated with the fludrocortisone on board, so hopefully she'll regain some of the weight she's lost. You may have noticed that in her recent pictures she looks thinner than in earlier ones. I think there's a link between needing the fludrocortisone, and nausea, vomiting, losing weight, etc. Plus, if she has celiac or malabsorption or ?, then that would contribute to the weight loss. Or maybe she just needed more hydrocortisone, or....

She hasn't been constipated lately, either, but has swung to the opposite extreme. I'll spare you the details, but suffice it to say that the GI people will be questioning their choice of profession after our appointment this week.

Mobility: We have the Kidwalk gait trainer ordered, and it should arrive before school starts. That is, if school starts. The district website says that the teachers still don't have a contract, although I'd be happy to type one up for them tonight.

The Bottom Line

You were wondering when I'd get to this. The bottom line is Annie is doing well. Our family has enjoyed a full and busy summer and most of us are looking forward to school starting again--Andy back at school in Portland, David beginning college, Jack & Olivia both in high school together, and Annie in full days! Peter and Cris are a week or two away from welcoming their first baby girl into the world. Oldest brother Taylor keeps truckin' the 11 western states with too infrequent visits home. And Bill and I are thankful for the patience, strength, and hope Jesus gives us each day.

Jean

I can do all things through Christ who strengthens me. Philippians 4:13

Home Again

Thank you all for your prayers for us this weekend--Olivia and I had a very restful time away, and Bill kept everything under control here at home. He did say this evening that he felt his stress level go way down when I got home, but you know, that's exactly how I felt when he got home from his time away with the boys a few weeks ago. This life of caregiving of Annie is a two+ person job, and often a 3 or 4-person job, depending on the particular crisis at hand.

I'll post more soon--I've got a pile of laundry to do--but just mine & Olivia's, though--Bill had all the laundry clean & folded when I got home. What a dude.

Jean

Constraint Therapy Files

We're coming down the homestretch of constraint therapy--tomorrow, in fact, is the last day. Annie has done well, and is just beginning to use her right arm to reach and activate toys. Today she not only reached for a toy, but when it didn't work, she tried again and again. So those connections between her brain and her arm/hand are there--they just need tons and tons of practice. We have our work cut out for us at home, and much more so when she gets the cast off her left arm tomorrow. It'll be very easy to just go back to doing things the "easy" way--but we'll fight against that, right?

Meanwhile, this weekend Olivia and I going away for a bit of R&R--Bill took the younger boys on a little vacation earlier this summer, and now it's our turn. Someday we'll go together as a family, but we haven't found someone to take care of Annie for any extended time, so we'll tag-team for the time being. And someday, Bill & I will be able to go away together, but we're not seeing that anytime soon either. What would be perfect is for God to heal Annie, and then we could all go camping together, or to the Hilton, one or the other.

For now though, I'm just very thankful that Bill is willing to spell me for a few days, and I would be even more thankful for your prayers that everything go well for him this weekend. The boys will be here to give him a hand, too, helping with Annie and eating pizza rolls.

Jean

I will lift up my eyes to the hills—From whence comes my help?
My help comes from the LORD, Who made heaven and earth.
He will not allow your foot to be moved; He who keeps you will not slumber.
Behold, He who keeps Israel shall neither slumber nor sleep.

The LORD is your keeper; The LORD is your shade at your right hand.
The sun shall not strike you by day, nor the moon by night.
The LORD shall preserve you from all evil; He shall preserve your soul.
The LORD shall preserve your going out and your coming in from this time forth, and even forevermore. Psalm 121

Weekend Update

We finished the 2nd week of constraint therapy, and so far, only 2 people have asked us how Annie broke her arm. (Most people who notice the cast just don't ask.) I do think the therapy is working--today while I helped her practice using her right arm, she lifted it up voluntarily for the 1st time to touch her Princess Mirror. That thing is so motivating--shoot, I'd touch it too if I heard "You look WONderful!" everytime it lit up.

The other thing that I've noticed is a few more vocalizations/sounds/words since she's been working with her right hand. And, if language is primarily on the left side of the brain, and if the function of the right hand also originates from the left side of the brain, then maybe rattling around some neurons for her hand is waking up some language neurons. That's just my layman's theory, I don't think you'll find it in a brain surgery textbook. But let me know if you do.

She was a bit gaggy today, so that wasn't very pleasant. We are still trying to regulate her gastrointestinal issues. The salt-regulating element of her Addison's is still fuzzy--we're trying to figure out fludrocortisone, and what, if any, influence that has on her nausea/gagginess. I did read today that if you have hyponatremia (an electrolyte disturbance of the salts in the blood) that you can be nauseated too. And when you're nauseated and vomit, then you can exacerbate the hyponatremia. She's a very complex little girl.

Thanks for your continued prayers. Please pray for our wisdom in managing her multiple medical issues, and please pray that this constraint therapy work to help her regain the use of her right hand/arm, as well as desensitize her left arm while she wears her cast. More words would be good, too.


Jean


The LORD will perfect that which concerns me; Your mercy, O LORD, endures forever; Do not forsake the works of Your hands. Psalm 138:8

A horse is a horse of course, of course

After a 3 hour constraint therapy session--and a nap--we drove to the hippotherapy barn and watched Annie gallop around the arena on Mahon the Arabian steed--okay, maybe not gallop, maybe amble, and Mahon is a Haflinger pony from an Amish farm in Indiana, not an Arabian steed. So anyway, Annie had a good session on the horse, and she didn't gag when it was time to feed him carrots after her ride. If you recall, a few weeks ago we tried to get Annie to feed one of the horses hay after her therapy session, and she just about turned inside out when the hay was placed in the basket in front of her. Today she was perfectly calm when we put the carrots in the basket on her lap. Come to think of it, I prefer carrots to hay myself.


Jean

Constraint Induced Therapy Camp

Annie finished up her last week of summer school on Friday, as well as the first of a 3-week constraint induced therapy camp. The constraint induced therapy is described in this link: http://en.wikipedia.org/wiki/Constraint-induced_movement_therapy.

As many of you know, after her brain injury, Annie lost the use of both arms and hands. After months of intense therapy, she regained some use of her left arm and hand, but not the right. Both arms and hands are tactilely defensive, meaning that she doesn't like them to be touched, held, or otherwise messed with. We don't know why--could be that she has a "pins and needles" feeling, or some sort of neuropathy in them.

The goal of this constraint induced therapy is to "constrain" her good arm, so she is forced to use her not-so-good arm and hand and thus develop new neural pathways. After her first week of constraint therapy, she does seem to be more willing and able to swing at things with her right arm/hand, but only when prompted, and not with any dexterity in her fingers.

Now, on Friday when we took the cast off to check her arm, we discovered a bit of a sore spot on her forearm. So, we're going to hold off on recasting until that spot goes away, or we'll have to come up with a plan B to restrain her left arm.

Please pray that we have wisdom to know to do about the cast, that her sore spot heals quickly, and that she maintain the stamina to get the most benefit out of this 3 week/3 hour a day camp. Also, as you think of it, please pray that God heal her tactile defensiveness completely.

Thanks--and I'll post updates as she progresses through the camp.

Jean