Tuesday, April 14, 2009

What's new

As I mentioned in the last post, I wanted to fill you in on how Annie is doing, and things to pray for.

First, the good news: She hasn't been in the hospital since June of '08. She has been quite stable, and for the most part, healthy--with the exception of the cold she has now, of course. Cough, snotty nose, the usual. Please pray that it go away quickly.

Now, for the prayer requests:

1. More strength in her torso, as well as balance. She walks in her gait trainer, but her strength to walk by herself is limited by the weakness in her hips, and general lack of standing balance.

2. Seizures. She still has about 4 or 5 a day. Along with the seizures are the 3 seizure medicines that make her already compromised brain even slower. If the VNS worked, and the seizures went away, and we could wean down/off some of this seizure medicine, we might get a more alert kid.

3. However, I think the effectiveness of the VNS is also affected by The Addison's Disease. Why? Because a normal person has fluctuations of adrenal function throughout the day, but Annie's adrenal function is only as good as the doses of hydrocortisone I give her through the day. If her regular dose is what she needs, great. But if she needs more, I'm usually behind the 8-ball on it, i.e., I realize she needs more hydrocortisone as I am cleaning her lunch off the carpet. Also, I think that some of her seizure activity may be caused by her endocrine system being out of whack. Because this week, as I am giving her more hydrocortisone for her cold, she is having less seizures. And seizures can be caused by endocrine problems. Anyway--this is probably too much information. Even my eyes are starting to glaze over.

Bottom line--please pray that God would tell me what to do. Sometimes I feel like if God would just point out something--probably something obvious--that it could have a huge impact on Annie's recovery, or at least, her quality of life.

Thank you for remembering her in your prayers.

Jean

Remember, O LORD, Your tender mercies and Your lovingkindnesses, for they are from of old. Psalm 25:6

13 comments:

Gretchen said...

Will print off this list and pray, Jean.

I know it's tempting to think that you might be missing something...and you may be. But...for what it's worth, I think you're one of the most alert, in tune, God-led moms I know.

Hard to wait on God for this one.

uncle jeff said...

jean - i will be praying for you this whole weekend. starting tonight at bed-time:)

love, your brother

Anonymous said...

Amen to both of those, except I am starting right now for a few minutes.
Love,
Terri W

Jean said...

Thanks Gretchen, Jeff & Terri, (and all of you who pray!) we appreciate your love and prayers so much. I sometimes wish I could listen to you--I think it would give me more faith myself! But today, I was thinking of the story in the Bible of the leper who said to Jesus, "if you are willing, you can make me clean," and Jesus said, "I am willing, be cleansed." I know that it's so possible--but God who decides. How do our prayers move His hand? I don't understand.

Sue Powell said...

Jean, it must be so difficult not being able to know precisely what Annie needs. You are a SUPER Mommie and she is so blessed to have you. I will be praying!

Gretchen said...

What a fine new picture in your sidebar. ;)

Jean said...

I agree!

Anonymous said...

I love the new picture, too. Annie you are so bright and beautiful! (OK, Miss Gretchen isn't bad either.)

Jean, I just reread your most recent writing. God has made a huge impact on Annie's recovery and her quality of life by honoring her with the parents, family, and support group He gave her. Trust me, I know. And please know too, that I am not in anyway trying to act like it's easy and that I know what you are going through. I know I do not. I am just trying to be encouraging by telling the absolute truth.......'cause I love you guys.
Toodles! (with continuing love and prayers),
Terri W

aunt rebecca said...

What's new?

Then He who sat on the throne said, “Behold, I make all things new.” And He said to me, “Write, for these words are true and faithful.” Revelation 21:5

Blessings be upon the Sullivan household...

Love

Your Father in Heaven said...

Dear Jean,

I was thinking of you this morning, and decided to send you this early birthday gift:

Words written long ago, yet ever new:

http://www.cyberhymnal.org/mid/p/r/o/protection.mid

How firm a foundation, ye saints of the Lord,
Is laid for your faith in His excellent Word!
What more can He say than to you He hath said,
You, who unto Jesus for refuge have fled?

In every condition, in sickness, in health;
In poverty’s vale, or abounding in wealth;
At home and abroad, on the land, on the sea,
As thy days may demand, shall thy strength ever be.

Fear not, I am with thee, O be not dismayed,
For I am thy God and will still give thee aid;
I’ll strengthen and help thee, and cause thee to stand
Upheld by My righteous, omnipotent hand.

When through the deep waters I call thee to go,
The rivers of woe shall not thee overflow;
For I will be with thee, thy troubles to bless,
And sanctify to thee thy deepest distress.

When through fiery trials thy pathways shall lie,
My grace, all sufficient, shall be thy supply;
The flame shall not hurt thee; I only design
Thy dross to consume, and thy gold to refine.

Even down to old age all My people shall prove
My sovereign, eternal, unchangeable love;
And when hoary hairs shall their temples adorn,
Like lambs they shall still in My bosom be borne.

The soul that on Jesus has leaned for repose,
I will not, I will not desert to its foes;
That soul, though all hell should endeavor to shake,
I’ll never, no never, no never forsake.

Anonymous said...

The new picture is incredible! I am awed by how smiley and involved Miss Annie looks! Can't wait to see how far she has come.

I continue to pray for clear answers and direction and better yet, healing! Sending love and endurance to you all.

Tanya W.

Sue Powell said...

Love the hymn... one of my all time favorites; and so true. Good reminder here for Annie and Mommie (and family and friends) too. :)

I agree the picture is -- WOW!

Jean said...

Thank you ALL for your encouraging words--I'll have another post up here soon...with a clue as to why Annie's looking so alert.

Stay tuned. (And on your knees!!)