Thursday, August 4, 2011

Whirl-Wind Changes--our life as usual!!!

I feel like time is just flying by and Ryder’s story changes so quickly! Instead of writing the long story of the conference, I think I’ll keep it simple with the updates since then. I’ll happily tell you more if you’d likeJ

  1. Since the last update (concerned about Noah) I’ve spoke to 3 different doctors (ped, genetic specialist and neuro.) They have all reassured me that if Noah had Addison’s, he’d be sick and suffered from dehydration in his past. Noah is very healthy and active. He is super tan for our family (still a little worried in the back of my mind), but am still riding this out. He has an appointment with the urologist on Monday because he’s having accidents during the day, which is unlike him. Poor guy L
  2. Ryder has had 3 doctor’s appointments in the last week and 3 different labs tests. His neurologist ordered another MRI and a few other leuko tests. The GI referred us to a surgeon for a GI tube (he pulls the NG tube out a lot) which is scheduled for the 17th of August.. He continues to refuse liquids=dehydration and he’s constipated.
  3. With the GI tube, life will be steadier for awhile. I decided to go to nursing school after all. I hate giving up the responsibility for full time care, but my Mom will take the role---which is so awesome! Her work is flexible with her working from home—luckily! Since Noah doesn’t seem to be a risk for ALD, I’m more comfortable with going to school.
  4. Ryder is now being tested for T1T2T3 chromosome abnormalities (after researching I don’t think it’s the case), a chromosome array and 1 more thing that’s drawing a blank right now—hmmm!
  5. The blanket I made sold for $200 at the ULF auction!!!!! I met so many wonderful families and doctors there. Mike and Helen (Coopers Mom & Dad) ended up buying the blanket for another family (after a biding war between the twoJ) we definitely made friends for life at the conference!!! I found out that Janet Read passed away today. We met her at the conference and spoke with her many times on the phone---a sweet lady that will be missedL
  6. Ryder now knows how to take off his diaper---yuck!!! I turned around yesterday and he was actually squatting on the floor pooping, while holding his diaper—AAAHHH!!!! This is like the 5th time (you’d think we’d learn our lesson—ha-ha). We’ll I am going to start potty training. It seems soon—much sooner than I expected, but since he’s taking his diaper off every chance he gets—it might be time???!!!!
 That’s all the updating for tonightJ all the boys are finally sleeping, so I should go to bed as wellJ

Good night—sleep tight and don’t let the bed bugs biteJ!!!