+55 Last ERT day!!!

Hello to all,
Today is my last ERT day!! I have had 8 post transplant and 27 in all. Someone decorated my infusion room for me to have a big last party day. Miss Torie is done too and her room was all decorated in pinks... how fun! I have been doing better, no throw ups and I even ate a little yesterday.

I was supposed to have therapy yesterday but missed it (oops) and have some tomorrow. So yesterday was a day of rest. I was in a really good mood and felt better. We are finding out today that I may have to go under Anesthesia for tests after day 100... please pray for grace and wisdom for the Doctors. They all say that I am doing so very well but may not get to come home right at day 100.. it will be soon though. Hope everyone is enjoying the beautiful day!!

God bless,

Josiah

+53 Big Green Tractor

Hello everyone,

Daddy got my green tractor over the weekend and I love it!! Miss Torie might get one to ride and then we can cruise the halls together. Torie is doing great, just needs her marshmallows (WBC) to grow on their own. I need to start eating and getting more strength back. Wish that I could share some WB's with Torie and she could share some of her super appetite with me.

I had my clinic visit and my x-ray today to see how my lungs are and if my tube is good. The doctor said that everything looks and sounds great!! The tube did move (but is still safe) but is in a different spot and the Dr. thinks it may be causing a slight raw spot from moving and that is what is causing my cough. I don't cough to much it just sounds bad (mainly while I am sleeping)... we just pray that the Dr. had wisdom and I am fine! :) I don't go to clinic till Wednesday for my last ERT and then if all is well I don't have to go back till Monday. We really enjoyed Grandpa,Grandma Linda and Lily up here for the weekend and were really sad when they had to go home. Can't wait to go home soon too.. please pray for travel safety for them as they travel many hours today. Hope everyone has a wonderful day.

Josiah

+52 Hannah's Birthday!

Good morning,

Thank you all for praying for me on Friday when I had my IVIG infusion. It went really well and I had no fever. Also, thank you for praying for my Grandpa and grandma Linda for travel safety. They got here late Friday night and by 2 minutes just missed a fatal accident. Please pray for safety as they travel home on Monday as well.

Hannah also received a delivery from R.McDonald house with all the presents you see in the picture (except the beanbag, that was from daddy). It blessed her so much! We celebrated Hannah's 7th birthday on Saturday with my grandparents and also a surprise guest, our cousin Lily!! We had so much fun...we went to Mall of America (of course I didn't stay long, but the girls stayed all day), and finished the day off with a yummy supper at Cracker Barrel. Although I couldn't eat and didn't feel well, Hannah (and everyone else) really enjoyed some of that Southern food!! :) I think I over did it yesterday and am home bound today. I got really sick when we did get home last night up and threw up till after midnight. I finally settled down sometime this morning and besides a bad cough, seem to be doing better. Please continue to pray that I eat and my congestion clears. My NG tube also came loose again when I threw up and daddy had to put it back in. I will have to have an x-ray on Monday to see if it is where it is suppose to be ( and probably to see how my lungs are).

Today is actually Hannah's birthday and she is so excited. They went to Church this morning and then later presents. Looks like a fun day. I hope everyone out there is having a blessed day as well.

God bless you,

Josiah

P.S. most of you have already heard this but just in case, please help us bless the R.McDonald house as they have so greatly blessed us. Go to www.rmhc.org and click on the dot in MN. Help us get votes and they could get $5,000 to bless others with. It only takes 4 seconds to bless so many .... thank you!

+50 Yeah! Half way home

Good morning

I am 50 days post Transplant! They are saying I can go home around day 100, so I am halfway there!! We are having lots of Spring weather up here and it makes it feel more like home... 60 degrees this week and 70's next. I can't wait to be able to have energy enough to go play outside, I wish I didn't have to wear this mask it's hard to breathe but I know I need it.

Mommy, Daddy and the Dr. have figured out the main reason I get sick is from the Bactrium. I get it 2x's a day on Mondays and Tuesdays and we narrowed my sickness to Monday PM to Wed. AM. We are going to try a different medicine that does the same thing but doesn't have the side effects and you only have to have it as a breathing treatment 1x a month. Humm... makes you wonder why they didn't just start me on that to begin with. They are also upping my tube feeds at meal time to help my stomach stretch a little maybe make me more hungry.

Today I am getting my 4 hour infusion of IVIG and the main side effect is fever ( high fever). And being my baseline is if my fever goes over 100.5 I go back in the hospital for at least 48 hours. We need prayer that my fever stays down, even if it is just a side effect. Grandpa and Grandma Linda are traveling today and I can't wait to see them. Pray for travel safety and heath for everyone this weekend. I also might get my "little green tractor ";) today so I will have mommy take some cute pictures to share. Thank you again for all your support and prayers. We are almost home!!

Lots of hugs,

Josiah

+49 almost half way home

Hello to all,

Yesterday I had my 7th post BMT ERT, only 1 more!! Today I had both Speech therapy and Physical therapy and they pushed me so hard that I was shaking by the end. I did get to ride a really cool green tractor and mommy and daddy are going to try to find one for me to have at home. It is really good exercise and I love riding it around. All this exercise is good for me and I am trying to get stronger. All my numbers are slowly going down but still good for only being 49 days post BMT. We praise the Lord that I have come this far, all I need now is to want to eat. I haven't hardly taken two bites in the last couple days. Tomorrow I go for my 4 hour infusion of IVIG (boost of antibodies), hopefully I won't need anything else. I saw Miss Torie today at therapy and she looks wonderful. She is my inspiration to want to eat and learn to talk, just continue to pray that her WB cells keep growing on there own.

Grandpa and Grandma Linda are coming for a visit this weekend and we are all really excited. Thank you all for your love and prayers.

Josiah

+47 Ronald McDonald Tour

Hello everyone,
Sometimes time goes so slowly and sometimes it goes so fast. I had so many therapy visits,clinic appointments and wasted time waiting for medicine that I missed Miss Torie's birthday party. My sisters and Jay got to go and had so much fun... we send her belated birthday blessings! We didn't get home till 2pm, that meant no a.m. nap and I was so tired. I had a pretty good night but when I woke up this morning I got sick again. I also had another therapy appointment but was back by lunch. I have my 7th ERT (post BMT, 1 more to go!)tomorrow and a busy rest of the week. I will have more therapy appointments this week with an infusion of IVIG (boost of antibodies) that takes 4hours on Friday.

Grandma Linda and Grandpa are coming this weekend too, so please pray for safe travel for them. They are coming to visit for my sister Hannah's 7th birthday that is on Sunday. Yeah, another party!! :) I hope that I have strength to have fun with them this weekend. I am still getting stronger, two steps forward, one step back. Please continue to pray that I will eat and want food that is good for me, I really need to get off the TPN but for now I just need to get an appetite.

Mommy is sending a quick tour through pictures today of my current home.
The bedroom has the two queens and a set of bunks (behind the door), we stuff 8 people in there. Next is the kitchenette that is in our room. Facing the other way is the window and a couch. Then the bathroom that consists of a big open area with mirror and sink then a little room that consists of the toilet and shower. The artwork on the wall is my sisters! Then we go down stair to the main living area. One is of the Main Kitchen and room where we eat supper. They serve supper ever night here for us, what a blessing. There are also several other smaller kitchens that are fully equipped for us to make other meals. There are play rooms and areas to borrow videos and DVDs. There is a game room and a gym with a half-size basketball court. Also , a picture we sent is where mommy and daddy get some exercise in the weight room. Last is the main entrance to the Ronald McDonald house. There are three other entrances and two main parking lots. Pretty big place here that we have been blessed to be a part of. We still miss home and can't wait to come back. Thank you for all the encouragement and prayers for me and my family. We can't wait to come home.
Love to all, Josiah and family

+45 Happy Lord's Day! :)

Hallelujah, This is the day the Lord has made we will rejoice and be glad in it! Happy Lords Day!

Hope everyone is enjoying their day of rest. I have had a few of these days lately and am feeling some better. Yesterday I was back to myself, playing and dancing, laughing and enjoying life. No sickness yesterday but this morning I tried to eat a little and it came right back up. Oh well, one good day is better than none. And this day isn't to bad. We go back to a full schedule tomorrow with clinic and therapies. Miss Torie has her birthday party tomorrow also and I hope I will be able to come at least for a moment or two, it sounds like so much fun!

Please join with us in praying that I will eat and not get sick, also that I will have more energy. I seem to be getting more energy now that I am back on my Lipids, but I am still not eating.

Mommy is working on taking some pictures of my home here. We realized that most of you have no idea what kind of living arrangements we have. So look forward in the next couple of days to a tour of my currant home, it's nothing fancy but we would like to share it with you. Ya'll mean so much to us, we are thankful that you have kept up with us in thought, prayer and encouragements. Thank you!!

Love to all,

Josiah and family