Ryder is still having a hard time balancing, eating, drinking and is just all around unhappy this week. Last night was very rough. He didn't really take a nap in the afternoon and was up the majority of the night. I brought him in our bed to sleep with us and I noticed that he was jerking/tremoring throughout the night. It really scared me. I wasn't sure if it was seizures, dreams or just tremors. I was up watching him to figure it out, but I couldn't. This morning he had physical therapy. He was falling all over the place. He spit up, which he has been doing a lot lately even with thickend liquid. I am still waiting for the appointment to get his G I tube placed. A few hours ago I noticed drainage from his ear. It looks like he has another ear infection. This may be the cause of the last few days being rough. I will call the doctor tomorrow. I thought getting the tubes in his ears would help reduce infections. It doesn't seem to be the case though. I guess they are draining better than they used to at least.
Ryder's birthday is next week on September 5. I can't believe my baby will be 2!!!! I haven't decided if we should have a birthday party yet because the walk is in a few weeks. I guess I should start making plans for small party at least! Any suggestions that would be cheap yet fun for Ryder?
Noah has been doing great since his surgery. It was worse than I thought it would be. He had to get a spinal tap and stitches in the area. He was off from school for two days, but is doing just fine now.
Remember the walk is on September 17. René needs to have the total number of walkers by September 3. Please e-mail her at rlnap@hotmail.com. We will be singing happy birthday to Ryder at the end of the walk. I can't wait to celebrate with you and spread leukodystrophy awareness!
PS for those of you that commented on the Dragon (which I still love) it is on sale at OfficeMax this week for $39.99----awesome deal go get one!!
Glad Noah is making a good recovery.
ReplyDeleteSorry that Ryder is having such a hard time. Leukodystrophy does weird things. i.e. if my LD kids get a slight fever they start refluxing really bad. That is usually how I know they are getting sick. (as far as I know I think my kids are the only kids that do this)
I hope Ryder is well for his Birthday♥
Oh poor Ryder. I hope he is feeling better soon. I'm glad that Noah is doing well. I'll have to tell John about the Dragon deal. He has been wanting one.
ReplyDeleteI have a great idea for Ryder's birthday party. You can celebrate at "the Clayton farm"! We can go swimming and enjoy the petting zoo all at the same time...and it's free! The only problem would be that we can't do balloons, they make Bryce gag and puke. Feel free to invite anyone you would like to. Let me know if you would like to do that and we can set it all up.
So excited about the walk. It's coming up quickly. Feel better soon, Ryder!
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