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
- 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 - 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. - 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.
- 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!
- 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
- 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!!!
I've enjoyed reading about your adventures with your little guys. I too take care of my Grandlove, so that my daughter can come on her lunch hour for a snuggle and a quick hug, or two. He used to go to a sitter, but we like him being able to set his own nap/wake schedule, rather than other kids' needs.
ReplyDeleteAs I posted on the leuko. site, we are looking at a feeding tube soon, so I do appreciate all the insights we can get. We are going for a button-type, first. He can't drink enough and with these triple digit heated days, he needs more fluids.
As a side-note, I am going to start blogging again, soon. It's just been so hard to blog about all that is stirred up emotionally.
Truth Ferret/Nana of Grandlove
Sounds like more fun times in the Hauer house!
ReplyDeleteI'm glad to hear what the doctors here had to say about Noah. Glad that it doesn't look like Addisons to them. Hopefully he will stay healthy and active as ever! Just out of curiosity...who is the urologist he will be seeing? I don't know if I have ever told you, but daytime accidents are something we have been dealing with in our now 7 year old for some time. We have now moved on to seeing a counselor since it seems to have more to do with Anxiety and coping rather than something physical. Anyway, good luck on Monday. I hope everything goes well.
Good news today also...our pool is finally beginning to clear! Hopefully soon we will be able to swim again. You'll have to let me know if you guys have time to get together sometime next week. Other than Tuesday, I think we are available. Take care. Good luck with everything this week!