Ryder has been in a great mood since he got tubes in his ears. I was surprised at how fast the surgery actually was! It took at the most 10 minutes before his ENT told us that everything went great. It took another 10 minutes before Ryder woke up from the anesthesia. The doctor told us Ryder had soooo much ear wax in his right ear that it took more time to clean that then actually putting in the tubes!
Since the tubes, Ryder has been in a wonderful mood! We have noticed that Ryder has quit an appetite lately--YAY!!! He is still picky, but eats some new things. He LOVES yogurt now and I haven't noticed a reaction--so far so good! He's also tried some meats, lasagna and cheezits. He always seems hungry (signs more and points to his high chair:) Ryder loves to dance. He used to need music close by him, but lately, he will dance when he HEARS music anywhere in the house:)
Ryder's PT suggested high tops instead of AFO's at his age. Grandma bought him some nice, flexible high tops from Stride Rite. He LOVES them!!! We are working on dressing skills in OT. He doesn't like to put on shorts, but if I show him his shoes..he is motivated:) We have been going on a walk outside daily. A few days ago Ryder started walking holding only one of my hands--YAY!!! He is still unsteady, but this was a major step forward for him!!!!
After getting Ryder's last lab results from his GI doctor, his liver enzymes are normal!!!!????? It is mystifying! They have been elevated for over 3 months. He needed an ultrasound and possible liver biopsy since the elevation continued to elevate (slowly) and then the last lab--wa-la--they are normal!!!!!!
The vote is in on the ulf. symbol I told you about last blog!!!! Les took my designs to Evit and had the graphic design program put them in graphic form. He also had a competition with the students to come up with an original symbol. They studied leukodystrophy and had some amazing designs for the cause. I got over a hundred designs to pick from. I forwarded 5 of my favorite to the founder of the ULF. After talking with her last week, we decided on one----you will see it soon:) It will be sold as magnets, on shirts, etc--to raise funds for research on leukodystrophy!!!! I am soooo happy to be a part of this and know it will make a great contribution to reasearch.
I have been trying to make money for Ryder, Les and I to attend the United Leukodystrophy Foundation seminar in Chicago this July. I have been selling my crafts (hair accessories, handmade dresses +more) on etsy. Check it out at www. LiveBeautifulbyDee.etsy.com (All profits go towards funds for Ryder).
I also recently became a consultant for Thirty-One. Check out my site at www. mythirtyone.com/Hauer
I love their products!!!! They range from organizational totes, purses, travel gear, a new kids line, picnic/out & about supplies, stationary and a lot more!!! Check out the catalog on my site. I get 25% commission from sales-which all goes towards Ryder. If you are interested in hosting a party or having a catalog party(I'll let you borrow a travel party kit to go for 2 weeks--you collect orders and get lots of freebies yourself-meanwhile helping Ryder!!!!! Either visit my site or call me if interested in helping out this way:)
It is so good to hear that Ryder is doing so well. I hope it just keeps getting better and better. I am so excited about the Leukodystrophy design. I can't wait to see it. I think that it is great that you have done this. I'll have to check out Thirty-one. I haven't heard about that before. Maybe one of these days I can do a party out here. Then we could finally meet each other! =) I hope that all goes well for you. Things for these kiddos can get so expensive!
ReplyDeleteThanks for the good news. It is heartening to hear he is doing better and making good gains. You remain in my prayers.
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