Wednesday, March 27, 2013

Sedation update

Thank you for your prayers and encouraging notes. My day went great yesterday and I was home by supper (at the hotel). Today my appointments went well but went past nap time so I am tired. Overall my week has been great. Only a few doctors left to see. Today I saw my heart dr who said I get an A- in my report, but an A+ for cuteness! The A- was because the leaky valve they found two years ago has gotten slightly worse, but the function of my heart is perfect.  She said that they have never had to have a valve replacement in any Hurler patient yet and I am not to be the first. Please pray that the leak will get better over time not worse. She also said that my hearts function is so great that it outways any bad. Praise the Lord. I know God has taken care of me so far and continue to thank Him alone for the grace in my life.

Thank you for checking in on me, we travel home this weekend. I am looking forward to seeing my sisters and James again. I keep looking for them but I know I will find them sometime! :)

Love to all,
Josiah and family
Leaving hospital after Sedation tests (can't get that glue off my face )

Sleepy boy during appointments today

Monday, March 25, 2013

3 year checkup in Minnesota

We are here!   It was a long trip but we are finally in Minnesota. We left home on Saturday morning and got to visit my new cousin (in IL.) for dinner that night. Then we left Sunday morning and got to Minnesota Sunday night.  We are not going to be able to stay at the Ronald McDonald house this time because they have a long waiting list but we got to visit and see Jerry and play at the play place.  Monday Morning we got to visit our favorite doctor, Dr. Orchard.  He is so good and it was nice to hear good news from him. Everything is going well and all we have to do is see all my other doctors now.  Tonight, we got to see TORIE!!  We had so much fun, I wish we had more time to play because we miss her and her family so much.  Torie, Grandma, Poppa Tom, Mommy, Daddy and I all went and had dinner and then gave Torie her birthday present. She just had her 6th birthday last week so she was the birthday girl tonight.  We love that they are up here and that our paths crossed that first day. :)


Going to sleep early tonight because we have an early day in the morning.  I have to be at the hospital for many test under sedation at 7:30 in the morning. Please pray for the intubation. I don't usually have problems with sedation it is when they have to stick the tube down my throat to help me breathe. My throat is not normal so it is hard for many doctors to get that tube down there and can make it swell, which causes other problems. I know God is in control and everything will go exactly as planned. Your prayers are very encouraging and we thank you for stopping by and checking on my.  Mom and I will keep you posted!

Friday, March 15, 2013

Minnesota trip


It's that time of year again. Actually, I didn't have to go last year so it has been two years since I have been up there. Where is there (for those of you who I have met in the last couple of years)?  There, is Minnesota Children's Hospital, were I had my transplant over 3 years ago.  I just have to go back for tests to keep up with my progress and to show all the Doctors up there how well I am doing.  The Lord has truly blessed me and my family and I are really thankful.

When I am up there I will get to see my friend/twin triplet Torie. It has been so long and I can't wait to see her and her grandma.  They were like family to us while we were away from home. Torie, also has Hurler syndrome and we are only 2 months apart in age and have the same Un-birthday (transplant date).   Several of our friends will be up there when we are having check ups done and I will get to meet a few new ones too.  Can't wait.

So please say a prayer for our trip. We leave next Friday and will come back in 9 days.  That is a long time to be away from my brother and sisters but they get to stay with Grandma Linda and Grandpa, so I know they will have fun. Maybe pray for them too :)

Hope you all are having a wonderful year and thank you for keeping up with my progress. Your support has been such a blessing to my family and I ... Thank You!!