Thursday, June 7, 2007

Rehab Diaries--Thursday, June 7th

Tomorrow we complete our four weeks of Rehab at Children's, and continue at home with Rehab Without Walls, hopefully beginning again on Monday. So what is Annie doing now that she wasn't doing a month ago?

1. Independently push herself up from a lying position, sit, and lay back down.
2. Ride a tricycle with help.
3. Yell, cry, and generally create a fuss. This is a great thing--showing emotion. She wasn't doing this a month ago. Having a flat expression is a drag. Screaming and yelling is good--at least this week it is.
4. SMILE! This afternoon she smiled a big smile for the FIRST TIME IN MONTHS!!!
5. Tolerate her teeth being brushed WITH toothpaste without blowing her groceries.
6. Taste a variety of foods--on good days. She's not yet consistent with her taste tolerance..
7. Sleep through the night without the help of medicine. She has come off of 4 different medicines in the last month.

She also hasn't had any obvious seizure activity the last three days--a huge praise. The new medicine has helped her focus and have more attention. I think it's also made her more drowsy, so please pray that the side effects go away and the good effects are permanent. She's also alot more verbal, which is so encouraging to us all--especially when her vocalizations are in response to something we say. Annie is in there--we just need to keep praying that God help her to make the words with her mouth. The whole motor planning and executing needs the Lord's healing touch.

Anyway--that's how things are going. Bill's with her tonight and then tomorrow we'll come home. It's been a good month, but a month of ups and downs--not unlike the past 5 months. Dealing with this has been the most difficult thing of our lives, and there are days when we sit in a puddle and cry. Let me tell you--I don't write in this blog when I'm blue, which probably qualifies me as being at least a hypocrite. I vacillate from missing the old Annie to bonding with the new Annie at least 5 times a day. I miss the way things used to be. But our new reality has a cute snuggle bug in it who likes to yell and scream and smile, so I'm good with it today. I just felt like I had to get that out there in case you ever thought of putting us up on a pedestal--we're crawling through this with God's help and His answers to your prayers.


"I have been crucified with Christ and I no longer live, but Christ lives in me. The life I live in the body, I live by faith in the Son of God, who loved me and gave himself for me. I do not set aside the grace of God, for if righteousness could be gained through the law, Christ died for nothing!" Galatians 2:20-21


Anonymous said...

(((Jean))) (that is a cyberhug). Thanks for the great updates and I will continue to pray for Annie and all of you. I appreciate your sharing your struggles... believe me I am not under any illusions that you are on any pedestals and know this must be SO difficult for all of you! You are loved! And prayed for EVERY day!!

Sue Powell

Anonymous said...

Jean-Children's rehab. had a purpose and now Annie gets to go home and be with the family. Yeah!! God is with her and working in her. Give her time and I bet she is going to do so much more in the next few months. I remember Emily making a lot more progress when she got home. Being able to brush her teeth w/o getting food back, hey that is big and her smile, thank you Jesus! Jesus loves Annie and you and your family, He is molding you and making you shine for Him! Lots of hugs to you and we continue to pray. His mercies are new every morning, Lord we ask you to give this family your compassion and love as they walk the path you have for them. In Christ alone do we place our hope and trust. Love, Cindy B.

Anonymous said...

Jean/Bill, I found two wonderful sites online that have netting!! One site has JUST what Bill and I designed today! (Great minds run in the same channel...!) Anyway, it certainly looks do-able, and NOT for $$$$ !! Love you guys,

Anonymous said...

And oh yeah that is SUPER about the big smile! Bet you were sooooo glad to see that!!! :) And hope there are a lot more of them in the very near future.

Sue Powell

Gretchen said...

Jean, Annie, Bill, David, Andy, Olivia, Jack, Peter, Taylor

Hugs and love on you all. I don't even know you all, and yet I know this has been quite a ride for you. God is good, and I pray that He will keep you all in the palm of His hand.

See you soon. xxxooo Gretchen

Anonymous said...

Dearest Annie,

Hello from over the puddle here in Spain. It's been so long since we've logged in to see how you are doing. We've been having computer problems and have not been able to. But, here we are... and what a difference I see! You are doing so much and doing so well! Keila and Nicole say hi and keep telling me you should bring your swimming suit when you come to visit, ok? It's a hot summer beach day over here today, after being along rainy month. Kids are out on this long summer's friday night. Well, take care. I really hope not too much time passes before we get to meet you. I don't want you to grow up too much before I can give you a hug hello.
All our love,
Becky from Spain (and keila, nicole, aaron, joel, and pontus)

Anonymous said...

Oh, a shout, a scream, to make a fuss
what’s wrong, what’s true, perchance to say,
to utter in frustrated mood
the wears and tears of another day;
To yell out in displeasure pure
emoting is a blessing sure.

Oh, the smile of a child
what a world of light it brings
an amazing thing upon the face
of youth and love unfettered
unmarred by earth’s unyielding strife
the bliss of ignorance of life
a smile upon a child’s face
and brightness shines through darkest place.

And God, the Master stands
controlling, allowing, revealing
leading as we follow Him
the brightest light that shines.

And so we ask His healing
every single day
we know He can, He has before
and we continue in this way.
We stand with you as best we can
though we must do so from afar
Through love we reach to hold your hand,
though we’re not where you are.

He warms us all with his presence
He soothes us all with his grace
He loves us through the toughest days
and we seek Him, always.

In private puddles we sit and cry
for what is, for now, no longer
He divinely wipes the tears away
with her smiles He makes us stronger
And each new day He shows us
something more of Him
While Holy, Holy, Holy
sing Seraphim and Cherubim.

While all around you life goes on
seemingly without you.
Ne’er a person passes a day
but to pray He’s brings you through.
The things of life keep pushing us
from where we’d rather be
beside you, every step of the way
until He heals Annie.

Lest ye forget you’re loved so much
on earth, as is so in Heaven,
may you feel a loving touch
for each of you, all seven.

Anonymous said...

Hey Sullivan's-
You all are so brave and courageous. Annie is so blessed to have such an attentive and truly devoted family.
Soon Annie will call your names with a smile on her face and a big hug waiting to wrap her little arms around each one of you.
She will be so blessed when later in life she looks back on this experience and how you all and God's supreme grace pulled her and you all through it- steadily, steadily, moving forward, trusting faithful, warriors.
The miracles do not and will not cease, like a ripple effect for generations of your family and unknown families touched by your honesty and raw faith.
God is faithful. He hears our prayers, our cries, our selfish and unselfish requests- and He finds joy in blessing us- He finds joy in answering our prayers- just like we find joy in blessing our own children with suprises, hugs, and the unexpected wink.
Smile on Annie! Smile on.
We are so glad to see your joy and we know that you are happier and happier every day that you return a little closer to the "old Annie."

Anonymous said...

Annie, you looked adorable at church this morning. Your hard work is paying off, keep it up Sweetie! Love, Andrea