9 Days and Counting

9 Days Seizure Free! Yippee! We are so excited around the Ratliff house to say the least.... Claire is doing great---she is tolerating the shots quite well and she has figured out how to go to sleep on her own---finally!

Started homeschool Kindergarten on Wednesday and Hope did great. She was so excited to finally start school. We took pictures of her and then she got to sit in her very own hot pink school desk for school. She has been able to read her first short story thanks to Hooked on Phonics--love that program... it gives instant success. It is crazy to think that we can have a whole day of kindergarten in 2 hours--wow! Gives plenty of time to play with the other girls. So far we have scheduled school to be when Molly is napping--thank goodness for naps!

Home Again, Home Again--Jiggety Jog

Sure is nice to have the whole family together again. Mom brought Hope and Molly home yesterday. And boy was I sure glad to hug their little necks. And I think Molly had grown enormously!

Praise the Lord--- Claire has been seizure free since Friday afternoon! I can't remember the last time she has gone that long! She has been quite a bit irritable, whiny, etc. But what a nice trade off!

The Lord is good, His love endures forever!

I think we will start Hope's school tomorrow! So we will be taking on Kindergarten at home, monitoring Claire's weight and blood pressure 2x a week, plus once a week lab work. Please give me strength to do it all and to manage our time wisely!

On our way home

We got discharged today! yeah! We will be making our way home. Claire did great. We started her steroid treatment on Thursday and she has tolerated it well. I have gotten to give her last 2 shots---yikes! The second time was better than the first for both of us. But I think I will be looking forward to this time to be over. There is a reason I didn't go into the field of nursing! ha! We should hope to see some results maybe in about 3 weeks but of course some kids need the full treatment before seeing anything.
God has been good... and as a great friend of mine said... He is such a show off sometimes. This treatment is quite expensive, like several new cars expensive, the first 2 vials of it were covered by our insurance... but our insurance starts over Sept 1, so we were going to have to pay out of pocket for the next 2 vials, however, God allowed for the company to agree to ship all four vials up front--so we have NO expense! Thank you God!
Thank you God also for this trip, our many friends, doctors and nurses who made it possible and has helped with all sorts of things along the way. We are fully trusting in God to complete the journey!

Day 2 over--Finally!

After a long day, and I mean long--we are home now and enjoying some quiet time. We started this morning at 6:30 at the hospital for the MRI, blood work and spinal tap... At 12:30 we finished and got a quick break for lunch. Claire did well, got to be sedated for the whole time and woke up with quite an appetite. We laughed in our wait for Claire to be done, we got to see other patients check in for surgery, have surgery, recover and leave all before we got to go see Claire again. Then we got to meet with her doctor again this afternoon. Of course we do not have the results from her blood work or spinal tap (some will take up to 6 weeks) but her MRI did not show anything of great significance, that we already knew. So we begin tomorrow morning her 3 month steroid treatment. We get to check in at the hospital and stay through Friday night probably. This will mainly be to check her as she starts the steroids and to help teach Russell and I how to give her the injections. Hopefully within a few weeks time we should begin to see results. Our prayer is that when this treatment is over her seizures will have stopped, we can stop the steroid treatment and all other seizure medication. And then we can begin the work of playing developmental catch up. Her current diagnosis of infantile spasms isn't great, but Claire has already beat the odds to some extent. She probably won't ever be what we would call normal, but we do believe that at some point she should learn to walk and talk to some degree. Our little Clairebear is a fighter and stubborn too, and the doc said that should serve her well.

One Day Down

Our first day at Mayo is over. We started off bright and early this morning for an EEG. The hope was that we could get Claire to go to sleep without sedation for it--and yeah--God answered prayer and Claire slept on her own for the whole process. However, we did need her awake for part of it, and we had no success in awakening her... she choose to stay asleep until we were in the car on our way home! ha! Just like stubborn little Claire to do things her own way.

This afternoon we met with her doctor and spent about 2 hours just talking about Claire. Right now the doc would like to try a steroid treatment for her---one way to get her to gain weight. And then she scheduled several blood tests, metabolic tests, genetic tests etc. Plus her MRI--all to be done on Wednesday. Right now the doctor is not seeing any new reasons for why Claire is having these seizures... but we will wait to make that final decision. She does feel we have been doing the right things in trying to treat her.

As usual, Claire is being a little trouper. She is currently enjoying some down time to just get to play. It has been such a blessing to stay here at Carol's house. We have our own quarters, but then just a place to come crash between appointments.

Tomorrow is our free day, and we are planning on seeing some sights, and Carol has even offered to babysit sweet Claire so Russ and I can have dinner and a movie! I think we will take her up on her offer.

God is so good to allow us this trip. And if for no other reason than to realize we are doing all we can do for Claire at this moment. She continues to "work" her magic and draw people to her, which then gives us a chance to share about our gifted child.

We Made It

Here we are in Rochester, MN....after 15 hours on the road we arrived in this beautiful city. I think we are all glad to be out of the car for now and able to have some down time before it all starts tomorrow morning.
First thing tomorrow, 7:30, Claire will have her first EEG.... and after that is the doctor's consultation.
May we all get rest tonight, for we have to be up early tomorrow.

Now! Happy 4 month birthday Molly. Hope you are enjoying the party that Hope and Grandaddy planned for you---with brownies and candles too!
I love you girls

Clairebear

Sweet Clairebear

On this day before we leave for the Mayo Clinic I wanted to share my thoughts with you. Two years and 3 1/2 months ago, God blessed me with a beautiful little girl... Claire Campbell, who quickly earned the nickname Clairebear. Although these past 2 years have been filled with struggle and trials, you have perservered. Every time I look at you, I see the presence of God and I am reminded of several things. The Bible is filled with verses which speak to my heart and give my strength for the days which we have already lived through and the days in which to come:

"Be still (Claire and Mandy) and know that I am God, and I will be exalted among the nations. " Psalm 46:10

"For God created your inmost being, He knit you together in my womb. I praise God because you are fearfully and wonderfully made; His works are wonderful, I know that full well. " Psalm 139:13-14

"Let the morning bring me word of your unfailing love, for I have put my trust in you" Psalm 143:8

"In this I greatly rejoice, though now for a little while we may have had to suffer grief in all kinds of trials. These have come so that our faith--of greater worth than gold, which perishes even though refined by fired--may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed." 1 Peter 1:6-7

Clairebear--Your daddy and I are so very proud of you and it is an honor being your mommy and daddy. We love you.

We do not know what this trip holds for us. But we are praying for God's will to be done. We are praying that somehow, someway we might be able to share about the love of God with someone else.