and there we have it

So the kids had their appointments at children's clinic today, it was better news. J'naya's numbers went way done from over 2000 to 900 ( still almost double what they want ot at they'd like it at about 550) Tony's numbers didn't really change still just over 900. Plan of action?? Eye appointments.......EKG's ( to see if the oxalate is doing any damage)....... ultrasounds (to see if there are kidney stones forming). so all in all the Dr. does`t think we`ll be able to get the levels back to `normal`so we may just have to live with what we got! She did suggeste i go on the mayo clinic website to `talk` to parents who also deal with PH1 , she also wants me to see if there is anyway we can all go to the `gathering`of the Ph 1 patients that happens every year however the last one was last summer and in new york (yup can`t afford that) so we will see! Now a BIG problem is finding a pharmacy that will make the K-citra for me so far no luck if I can't find one then I'll have to call the doctor and get another new me.

In other news.......the kids brought home report cards this week Good news all around.....Nothing below a 3 (back in the day that would be a C) and we brought home a pile of 1 ( that would be A's) so they all did well. Well the three that still live at home did the one that lives with her Dad did not show me her report card....I'm not allowed to see it....Daddy says so...I'm also not allowed to punish her.....again Daddy says so. I wonder if Daddy forgets that I carried that child in my body for 9 months, I did EVERYTHING for her for 14 years and now I am nothing.....Anyhow I guess you can see how that is going basically she is being "brain washed" by Mr. Wonderful. I'm still not sure how to handle all that.....All I want is my Ashton back....I miss her ALOT!!

meds!

I received a call today from the children's doctor, the news was not good. Both kids had fairly high oxalate output, Tony's was at 900 and J'naya's is 2100. The normal is 500. This is a concern. Now are the levels high because they aren't actually taking the meds ( We have caught J flushing hers, or hiding them in her sleeve) or is it because the meds are no longer working?? The plan is to watch them like hawks to make sure the meds are making into their bodies and retesting them in 1 month. I hope it's cause they aren't taking them. I do not want my kids to have to face a transplant!! I have also brought in a new "tool" to make sure the kids take their meds at the right dose EVERY day. Basically it's a white board/cork board, I used little zip lock bags on the bags is the first letter of the child's name and a number ( I.E. J-2 would be J'naya's for the second) so each day the child takes the bag for that day and it has all the meds they need in it. This way if either one misses I know who!! I hope this will make it easier to do. It is also on the wall which will make it noticeable and harder to forget. I also made some of these baggies to leave with my parents for sleepovers so that even at Grandma and Grandpas they get their dose!!



that's what it looks like. It's one months worth of medication ( we won't mention the cost all of which IS NOT covered by insurance) We will be offering a reward at the end of the month for all the days the meds were taken!! I hope this works!!