+20 &GI tube, YIKES!

Hello everyone,

Sorry I didn't come and talk yesterday, I'll make up for it today :) . Yesterday I did get a visitor, my sister Hannah came and made me smile. I had a lot of oral medicine to try to get use to and a lot of it came back up..... Kinda wore me out. I still had fun playing with Hannah and since I was feeling some better just wanted daddy to get every video and toy available to play with.

I slept good over night and woke up to having to have 7 oral meds this morning... yikes! I don't like these meds, I just see them bring the bag in and I start gaging (I also try to inhale them, maybe that will make mommy and daddy not make me take them ;) . Besides having the medicine today I got another visitor. Leah got to come play with me and even went and brought me some blocks. That was a lot of fun... I like my sisters and Jay coming to visit. I am still doing really well although my counts are all going down. I had to have Hemoglobin(7.4) this morning and probably Platelets(13) by tomorrow. My ABN is 6.2 and my WBC keeps dropping 7.8, but I am thankful that it's that high and I am still feeling pretty good.

Well, I was feeling pretty good till the Doctors,mommy and daddy decided I needed a GI Tube. Wow, I thought my life was ending. Daddy was holding me down while a nurse came and shoved a tube up my nose and into my tummy. I gagged and cried (so did mommy). I had to have an ex-ray to make sure they got it in my tummy and not my lungs. Finally I got settled and wanted to sleep for awhile when they came back in and said they didn't get it in right and had to move it. Oh, boy! Jesus please hold my hand! Now that its fixed, I got my first medicine in it and it didn't do to bad. Then mommy tried to give me some Medicine through my new tube and I threw up so awfully I turned blue. The nurse said that my pain med had worn off and I was trying to barf the tube. It stayed down and I think I am going to take a nap for the rest of the day.... until the nurses come back that is. I had my 3rd enzyme treatment since BMT (22 total). It went pretty good, my blood pressure and heart rate are really high though and my fever is going up and down. I think it's just from all the activity I have had today. Hopefully I will have a good night ( pray for NO fevers), and I will be able to go home (RMcD house) tomorrow. We are all looking forward to that (and a little anxious with all these meds.).

My family got to meet another friend who had Hurlers Syndrome (like me), his name is Wyatt. Wyatt is 4years old and has handsome red hair. He and his family are from Florida and he is having a surgery on his back today, so please pray for him and his mom and dad. Also, it seems Torie is doing a little better too. Please continue to pray for her as well. Thank you all for your loving notes, cards and prayers for me and my friends. It is so encouraging and it helps carry us through. I know that the Lord is the only one who carries us through but I am so thankful that He works through wonderful people like you (people we know and don't know). It overwhelms our hearts to know how many people care and we love it. Thank you, Thank you, thank you.

Lots of hugs and kisses sent your way,

Josiah

P.s. If you want to know more about Wyatt you can read his blog at www.caringbridge.org/visit/wyatt or click on my link at the right.