Saturday, March 27, 2010

The Ultimate Excitement!

Surely, if you read this blog, you know that Ian loves trucks. No, Ian is obsessed with trucks - especially "big rigs." This afternoon, a wonderfully thoughtful farmer friend of ours showed up with his semi and Ian was absolutely beside himself! He was simultaneously thrilled beyond comprehension and terrified of the horn and something so big being right in our driveway. Fortunately, they called ahead so I got a video of him as it pulled into the drive and another one when he was in the cab. He got to blow the horn multiple times (sorry, neighbors!) and take a ride in it. He has not stopped talking about it yet and I'm completely sure that right now, he is dreaming of it. In case you wonder how a non-verbal child talks about something so amazing, he continually points to the driveway and chatters away. We know exactly what he is saying!

video

video

Wednesday, March 24, 2010

Botox

Ian is not concerned with premature wrinkles, but he did have 12 Botox injections this morning, which really wasn't too fun. Botulinum Toxin A, or Botox for short, is used in CP patients to interupt communication between the nerve and the muscle. The hope is that while this communication is interupted, we will have 6-12 weeks (however long the effect lasts) to work on strengthening the other muscles. If the injections are successful and we see some improvement, they will be repeated (ouch!) several times. He got 3 shots in each hamstring, 2 in each bicep and one in each hand. He was a real trooper but I know it hurt because he cried like I've never seen him cry. Even tonight when I put his PJ's on, he was reminding me of the shots (by pointing to each place he was stuck.) Now we wait for 7-10 days and then, we can begin the therapy in earnest.
He was not this happy while at the doctor but thought you'd rather see a happy boy than a sad one. I know I would!

Monday, March 22, 2010

Showers of Blessings

We were blessed with a busy and very fun weekend! On Saturday, I was invited (along with the other grandmas) to a baby shower in Indy that Lindsay's church friends had for her. I so enjoyed being with them and seeing the bond that they share through Christ. They are awesome young women who have prayed for and with, and supported Lindsay during these last 4 years of Troy's medical school.
Then, on Sunday, Elizabeth and I, along with Troy's mom and sisters had another shower in Rossville. Friends and family came from Kentucky, Danville, Lafayette and Frankfort to shower Miss Olivia with more gifts. She is going to be one well dressed, little lady! What a blessing and encouragement each of you are! Thanks for sharing in our joy!!
The first pictures are from the Sunday shower:




These pics are from the Indy shower:

Casey, a long time friend (since kindergarten) of Lindsay's and fellow medical student wife, shared devotions from Prov. 31 and was the co-hostess.
Troy's mom, Cheryl, playing pictionary while the pregnant lady holds the board.

Krista (hostess) and Elliana (I hope I spelled that right!) with Olivia and her mom.





Tuesday, March 16, 2010

Oral Motor Therapy

Warning: this might be boring and it's very long! However, I promised a few people I would do a post about the workshop that we attended last weekend and the evaluation that Ian had. I can't begin to tell about it without explaining the amazing circumstances surrounding it. On Christmas Eve, we always get together with my dad's family and it's rather chaotic, with all the kids running around busting a pinata, games, gifts, tacos, etc. In the midst of all that, I had a few very rare minutes to talk with my cousin-in-law, Kyla, who has also been blessed with a special needs child. We talked about PT, OT, IEP's and eventually got around to speech therapy. She told me about a lady in Tuscon, AZ, named Sara Rosenfeld-Johnson who is an Oral Motor Therapy specialist and that they had been able to get an appointment to have her evaluate their son when she was here in March to do a training workshop for speech pathologists. I came home and googled her name and was most impressed with her 36 years of research and work in the field as well as the results she has had over the years. 3 days later, Ian had a video feeding study which revealed that he was aspirating everything he eats and the docs at Riley wanted to put a feeding tube in that very day. We weren't ready for that, so we came home and started researching and calling doctors to see if we had any alternative. On a whim, I e-mailed Sara and asked if it's possible to teach a child like Ian (through therapy) to eat safely with the hope of having the g-tube removed someday. She actually returned my e-mail and gave me a time to call her at home, which I of course, did. Everything she said made so much sense and although she didn't have any spots left for another eval, she made one for Ian. Fast forward to last Friday and Saturday: Tom and I were able to attend the workshop which was pretty intensive and a bit over our heads, but we learned soooo much about oral motor therapy. At the end of the second day, we took Sara back to her hotel and she did a 2 hour eval with Ian. It came as no surprise to us that his mouth/jaw are very assymetrical and he has very little jaw strength, almost no lip rounding and no oral airflow. So, we now have a 7 page intensive therapy plan that we will do as many times a day as we possibly can. It's a long road and realistically, we know that it may or may not work, but we feel strongly that we have to give him this chance. We also know that our God is "able to do far more abundantly than all we could ask or think" for His purpose and His glory!

While we were attending the workshop, we discovered that Ian was one of only 5 children in Indiana that were evaluated by Sara and that the only reason she was here to do the workshop was because she and her husband were taking their RV cross country from AZ to Rhode Island and agreed to stop along the way for some trainings. (This woman travels all over the world, training speech professionals the techniques that she has developed.) The timing of Kyla mentioning this type of therapy, and then Ian's feeding study and then, Sara coming to IN and agreeing to see Ian is all just incredible. We stand in awe of our great God!

Now, you might wonder what we did with Ian for those 2, very long days. That is an excellent question and one I will save for another post.

Ian Lindo Humphrey

Our adoption of Ian was complete and final as soon as he entered the country on September 12, 2009, because of the type of visa he entered with. However, in order to be recognized in the state of Indiana and to officially change his name, we had to file a petition for foreign adoption, which Judge Daniel signed today in his courtroom. So, although he's been part of our family for 6 months, he will officially now be Ian Lindo Humphrey!


Monday, March 15, 2010

Good Buddies

Ian has a special little friend who stopped by today to say hi. Every time these two see each other at church, they are so happy to see each other and they just hug and hug. It's the sweetest thing! Noah doesn't seem to be intimidated that Ian can't walk or talk or use his hands in a normal way. Today, Ian was on the floor and Noah got right down with him and laid his head over on Ian. So precious!



Monday, March 8, 2010

Happy Anniversary!

Happy 2nd Anniversary, Drew and Elizabeth!! Your marriage is a true picture of Christ and the Church! Keep on reflecting HIM!! We love you!!


Saturday, March 6, 2010

Two in One Year!!!!!!!!!

Tom and I were blessed to have all the kids come for dinner last night and were blessed beyond measure by Drew and Elizabeth's news! Check it out at merciesunending.wordpress.com. We are going to have not one, but TWO grandbabies in 2010!!! God is so good!!!!!


Monday, March 1, 2010

Therapy


This is for all of you who are interested in Ian's therapy. (I have people ask me what Ian and I do all day, which cracks me up! This is a large part of it.) We have wonderful therapists in Brookston that we see once each week. Every other day of the week, I do home therapy with him. We listen to music or stories while we do it to make it more fun for Ian. We start by putting the air splint on his left arm. This keeps his arm extended for as long as we can. (He usually holds this arm up close to his body so we are working on getting it straight.)
Next, we do leg stretches which take lots of time, but I couldn't take a picture of them since I am the one doing them and it takes both hands to do them. (I haven't trained Jack how to use the camera yet.)

Then, we do a little oral motor therapy with a vibrator. It stimulates the nerve endings in certain places around Ian's face. The hope is that over time it will help with drooling.

Now, the fun part. Ian sits up (supported in a corner) and works on reaching for items (especially with the left arm).
After that comes the really fun part, which I also couldn't take a picture of but he lays on his tummy on a beach ball and pushes himself up to strengthen his shoulder muscles. He loves to roll back on his feet and then shoot himself forward on the ball, which is not part of the therapy but makes for many giggles and squeals.
Next, we work on crawling. Ian gets around on the floor by rolling or scooting on his back, which uses the muscles that are opposite the ones that need strengthening, so we work on tummy crawling. It takes so much effort for him to do it but he's slowly getting farther and farther (6 feet instead of 2. :-)

And, of course there is also the Pony which you will notice at the top of this post because I couldn't get the picture to move to where I wanted it. He loves it (can you tell?) and uses it as much as I'm willing to follow him around and help guide him through doors. So, there you have one of our therapy sessions. I'm not sure how we will get all this in when he starts school.




Thanks, Dad!

Tom has been in China on business for several days and Ian and Idon't like it very well. However, being the thoughtful, wonderful dad/husband that he is, he recorded a series of messages before he left. We listen to one every morning and evening. They are mostly for Ian, but we both look forward to hearing what he has to say. In fact, if Ian gets his way (and he usually does), we listen to them over and over and over! The best part is that he always tells Ian to "give Mom a big hug for him" and since Ian will do anything he possibly can to please his Dad, I am getting lots of great hugs!!



Can you tell how much he loves listening to the messages? (As a side bar, notice the awesome pillowcase that his great Auntie Becky had made for him. One of the trucks says "Ian's Trucks" on it.)