+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

+43 No more CSA

Hello,
I went to clinic today and my numbers went down. It wasn't enough to have any extra medicine and I still get the weekend off, so that is not so bad. I did throw up once and didn't want to eat at all today. I have been more tired and I had PT and Speech Therapy appointments today. I was wiped out when we finally got back here around 3:00pm. Mommy and Daddy went shopping to see if we could find anything I would possibly want to eat... we will see. I do start back on my lipids with my TPN tonight so maybe my energy will be up by tomorrow. Over all I am doing well, I just have a few hurdles to over come. My medicine list is going down and that is always goood. I am only on 5 medicines 3x's a day and two that get hooked to my port at night. Everyone else is doing well too,just missing home. Please continue to pray for me, sometimes it feels like this journey will never end. We know that we will get to go home before we know it and look forward to seeing our family and friends when we get back.

Love to all,
Josiah and family

+42 doing better

Hello everyone,

I am doing better today. I got a day of rest and I slept in some this morning, actually everyone slept a little later this morning. I didn't get sick when I got up and I have not thrown up all day. I have taken it a little easier today (with no clinic) and I have seemed to be better. I still have not wanted to eat much but Me-ma said that she would fatten me up when I got home. :) I did get to go outside for a few minutes to play with Miss Torie and her Grandmas. It was such a beautiful day that we couldn't pass up a chance to play on the fun toys out in the yard here. I was only able to stay a short time and it wore me out, but I had fun. When we came in I took a bath and a really good nap.

Meanwhile, Daddy went and fixed the van so it is not so hard to drive and mommy went to Target for some eggs and bread. Pa-Paw and all the girls got to go to the famous bingo night and won lots of prizes. Tomorrow we have to go to clinic again but not till 9:00am and hopefully not for long.

We pray for a better time for the rest of the week. We will talk to ya'll later, everyone have a good night.

Hugs, Josiah

+41 ERT day

Hello everyone,

Today was my 24th ERT (5 post BMT). It went really well... I did get a slight fever at the end but it went away really quick and I was fine. I only have 2 more ERT's to go and then I will hopefully be all done. The day over all has been a little down. Mommy, Daddy and I took the shuttle to clinic today and I got sick on the ride, I also got sick when we got home. I haven't felt like eating at all and still don't have to much energy. I also have had a lot of bad diapers and the Dr. said it could be from the Ensure I have got in my line, so we have stopped that. Like last night I kinda felt I would like a bite or two before bed and I ate a couple crackers. Hopefully they will stay down and give me a little energy for tomorrow. On an up note my blood work numbers today where really good... all of them went way up (WB 10.4)!! Praise the Lord! Since my numbers where up they said we could have the day off again tomorrow. On Friday I will have a clinic visit to test my blood numbers and 3 therapy appointments, so hopefully I will have more energy to do all those exercises. Till then, Goodnight for now. I hope you all have a wonderful night.

Love,
Josiah

+40 Just makin it

Hello,
Just wanted to write a quick update. Today we got a day off from going to clinic and we made chocolate chip pancakes.. yum. Although, I didn't eat any of them my sisters and Pa-Paw sure enjoyed them. Daddy worked on the van and my sisters got to go to the library that is in the school here. As for me I haven't felt myself today. I started the day off by throwing up 2x's and not wanting any food. I have been tired and sad today, but we think it's because I don't have any energy from not eating and not having my lipids. I did perk up a little tonight and ate some green peas and a bite of hot dog but we will see how I do tomorrow. I need a good nights rest for tomorrow is my ERT day and I hope it goes well. Hope everyone has a good night and thank you so much for all the encouraging notes and prayers, we covet them all!

Hugs,
Josiah

+39 Trying something new

Hello to all,

Hope everyone had a wonderful weekend. I didn't go to Church Yesterday because my numbers where so low, but daddy took the girls and they really enjoyed it. Our church at home had services in our new building yesterday and we sure wish we could of been there (can't wait to see it). Also,Pa-Paw came back yesterday afternoon and we were all glad that he had a safe trip back.

I went to clinic today and so did James. James went to get checked because he has bumps on his back where they took out the bone marrow (see picture). The Dr. said that it is where there was some bleeding between the bones and it hardened, they should go away on there own eventually. My blood work came back really good and I didn't have to have extra medicine. Actually they took me off of one (Ursodiol) and cut one of them in half (Lasix). Also I get off my MMF on Friday and my Ganciclovir (anti-viral for CMV) ends on the beginning of April....yeah, less medicine! I still don't have much of an appetite. I kinda go back and forth... one day I will eat up to 400 calories then the next day I won't eat anything. Mr. Jerry is trying something new by taking away my Lipids (fat in my TPN). Hopefully this will cut my calories enough for me to want to eat more. Also, we are going to try to give me "shots" of ensure in my tummy line after meals (if I eat) to help my stomach stretch a little and maybe want more food. The Dr. said that right now I feel the hunger pains as nausea pains and can't tell the difference, so I push the food away instead of wanting food. Please keep praying that I will eat more and can keep it down.

We have been having beautiful weather here, maybe later in the week if it stays warm my sisters, James and I can go outside and play with Torie. It's Torie's birthday next Monday (she will be 3)and she visited us in a wagon passing out invitations for her Elmo birthday party ( see picture, no that is not me.... it's Torie with James :) We love seeing her and the thought to go play outside sounds so fun. We all love the thought of Spring coming and can't wait to get home and work outside. We miss you all and hope you are enjoying your weather no matter what it may be. Thank you for your continued prayers we love you all!
Josiah and family

+37 numbers holding steady

Hello,

I didn't have to have my G-CSF today, my numbers didn't go down but they didn't go up either. I am just holding steady. Thank you all for your prayers I know that God is in control of my numbers and my immune system. I am so thankful that the Lord has kept this far. I had an early appointment this morning and when I go home I asked for food. I ate a half hot dog and some Cheetos. I thought I wanted some Rice Krispies but just played with the box instead. I still have to see the Dr. on Monday and hopefully my numbers will be back up again. Yesterday my sisters and James got to do Tap dancing and crafts. They even wanted to give James his own tap shoes, mommy thought it was so cute and James loved it. I just got to hear the stories but I will be able to go play pretty soon.

Pa-Paw will come back late tonight, actually Sunday AM (12:00) and we pray that he has a safe trip. Also my Uncle Nathanael & Aunt Kendra and Uncle Josh and (soon to be )Aunt Lindsey had a vacation in Colorado and are traveling back today. I hope they have a safe trip, I miss them so very much. We got to talk to Me-ma this morning and it made everyone so very home sick to go visit her and all our family. We miss home but know that God will bring us back in His time. We are so thankful that I am getting better and pray that this time is productive for His glory.

May God bless you all, thank you for listening and being there for my family and I. We love you all!!

Josiah and family

+36 Numbers went down

"This is the Day the Lord has made we will rejoice and be glad in it."

Boy, Daddy said if a happy heart does good like medicine (Prov.17:22) I should be getting better really fast. I am back to my normal loving self, laughing and being so cute ( at least mommy thinks so ..:). I am giving hugs and blowing kisses, giving love pats and waving Bye ( even to the Doctors). Yesterday I had a day off of going to clinic and took it easy. Today I had to go for blood work and missed the shuttle. So we all jumped in the van and daddy dropped us off. I got to see Miss Torie and her Grandma's, and a bunch of friends from the RMcDonald house were there. It took longer than normal and my tests came back that my ANC is down to 1.3 (tells how my immune system is building). That number isn't the best and I have to go back tomorrow to get it checked again. If it drops under 1 I will have to get G-CSF ( a medicine to help boost my immune system), I haven't had any of that since I left the hospital and everyone thought that was amazing. It wouldn't be really bad (actually the Dr. expect it), but I sure wish my numbers would go up on thier own so I don't have to have any more medicine. Mommy and daddy are also trying to be super careful... no Car show this weekend (bummer :) or anything else including Therapy. Hopefully my numbers will be going up soon. Also, haven't really eaten much still but I did look interested in some of daddy's noodles this morning. One day at a time....

Sorry I missed ya'll yesterday and I will try to talk to ya'll tomorrow... but for now, have a blessed day!! Please keep up the prayers (for me and Miss Torie), we sure appreciate it and it encourages us so much.

Love and hugs,

Josiah

+34 ERT...only 3 more!

Hello again,
Today I had my 5th ERT and it went really good, I even got to see my friend Torie. She is doing a little better and still here at the RMcDonald house.
My day started by not eating this morning. Actually threw up twice, but daddy said that I ate 1/2 turkey sandwich for lunch at the hospital. Once home from my ERT I was in the best mood, my sisters just kept making me laugh and laugh. I got in a good nap and mommy hopes that I want to eat a little supper tonight. I really like Cheetos but I have also tried noodles, cheese crackers, and obviously some turkey sandwich. Of course I have only tried a bite or two at a time and that doesn't add up the calories. I might not be eating much but at least I am in good moods (most of the time). Just wanted to give ya a quick update today. My blood work was really good today so I have Thursday off... everyone have a wonderful night.

Hugs to all,
Josiah

+33 still hanging in there

Hello,

Hope everyone had a good day. I got to go to the store today, Woo Hoo! It was a quick trip and mommy washed the whole cart down before I got in (actually daddy washed half and mommy washed the other half), aww mom. I still had to wear my mask and probably won't go again for awhile but it was nice to get out with the family. I am so thankful for the prayers lifted up for me everyday, I get a little stronger as the days pass. I still am not eating very much, I will have to tell Mr. Jerry (my Nutritionist) that I didn't eat the loaded potato bowl (with butter,cream and cheese) that daddy made me (daddy ate it :). I am sure that I will get there but they want me to eat 400 -800 calories a day, Yikes ! Also, I still don't do to well with my oral medicine so my nose tube doesn't seem like it will be leaving any time soon. Other wise I am doing pretty good. Enjoying being out of the hospital and able to play. I go have my 5th (post BMT) ERT tomorrow, I hope that goes well. I will also have blood work done and if it's good I might get a few days off again (yeah)! I also am thankful for all the cards and notes I am receiving. I got a card from Torie's Grandpa Tom that played a song for me.... I loved it! I don't get to see Torie to much (seem to be on different schedules), but yesterday my sisters saw her and were so happy that she is still here at the RMcD house. Torie still has hurdles to overcome and her Grandmas are finding it hard to get extra sleep even though she is here but we are all glad that she is on her way to getting better. Thank you all so much for your continued prayers. Even though we pray the days to follow are uneventful we are still daily getting over hurdles that we need much strength for and much prayer. God bless you and hope everyone has a good night.

Hugs,
Josiah

P.s. In that bottom photo daddy is fixing my TPN ( nightly food that goes straight in my Port), that is what I need to get off of because it is hard on my liver. I need to eat more first... we'll see.

+32 Happy Day

Hello everyone,

Yesterday I got to go to church!! Yeah, my family and I enjoyed it so much. I didn't get to stay for the entire service, I started breathing so loud from having my mask on so long that daddy thought I might be making to much noise. It was nice to get out and go somewhere though and if you can only go one place what better place than church! :)

Today I went to clinic and the Dr. said my blood work looked so good that I could have another day off. They said that for only being +32 days post BMT my blood work looked excellent!! I still need to start eating. I need to eat at least 400calories to cut my lipids out (the fat) and 800 calories to stop my TPN. I really need to get off the TPN, it's not good on my liver and once my TPN is gone so goes 2 other medicines. Other than eating I am doing really good and just praying that my body gets stronger every day.

Tomorrow Pa-Paw goes back home. He probably will come back next weekend and it will be so different without him. I hope he has a safe trip home and gives Grandma Dee a great big hug from all of us. Hope ya'll have a wonderful night!

God bless you,

Josiah

+30 a few problems (but not with me)

Hello everyone,
I'm sorry that I didn't post yesterday but we had a problem with our site (thank you Uncle Kenny for your help!). Someone has hacked into my site to cause problems... I can't understand why but hopefully we have fixed it (at least for now). Mommy's camera is also down right now, so no picture today. These are so minor in life that we almost hate to mention them but at least you know why we are a little different today.

On a different note... I got to see my friend Torie, she is looking so good. We are both a little shy (with blue masks in our face),but mommy knows we will be playing in no time.
I have been doing pretty good the last couple of days. I am on a medicine (actually still considered a chemo drug) for about 4 more weeks that really irritates my diaper area. I have got blisters and cry every time I go potty. I also have been a little more nauseated, which doesn't help me wanting to eat. Over all I am doing really well, my blood pressure and fever have stayed down (big plus). I don't eat to much but I drink really well and I enjoy being able to cruise around the room to see what my family is doing. My platelets jumped up again today. The doctor ordered them yesterday because my platelets were 12 and today they were 17! Praise the Lord! My blood work came back where I could have just Sunday off, I am thankful for the little blessings as well as the big. I am not able to go to church yet but some of my family will be able to and they are really looking forward to that. Thank you for your prayers.... we are just on our (hopefully boring) climb to getting to go home in May. We love you all and hope you have a blessed Lords day tomorrow!

Hugs,
Josiah
P.s. Please pray for travel mercy for Wyatts family. Wyatt is doing well and they are on their long journey home to Florida.

+28 Great News!!

Hello,

Guess what everyone, I have something really special to tell you! My BMT worked and I am 100% Engrafted!! The Doctors took a test last week, that would take awhile to come back, and it sees how much of my DNA is James's... 100%. The Lord provided a perfect donor for me and my best friend and twin brother James gave me cells that produce enzyme. I will get stronger and stronger everyday and soon will be able to come home. I will have to be careful still for my immune system is just starting to come back but the Lord has greatly blessed. My appetite is slowly coming back as well and as you can see in my picture I have eaten a whole serving of CHEETOS, YUM!!
My blood work came back so good that the Dr. said I might be able to have 2 days off this weekend and not have to go to clinic. Wow! I still enjoy the walks in my stroller, but maybe we can all go for a walk somewhere besides the hospital... and maybe my friend Torie can come too. She might get to come to the RMcD house tonight and we will all be happy to see her.

Thank you all for your prayers, we are so encouraged by how many people are supporting and praying for us. We couldn't do this without the Lord providing so much for us. We love you all and hope you have a very blessed day!

Josiah

+27 Enzyme Day

Hello from Sunny MN,

I hope everyone is having beautiful weather, we are sunny and 40 degrees. Even though I can't be out in the sun, I sure enjoy the nice weather and taking walks to clinic everyday. Today I have my 23rd ERT (4th since BMT, 4 more to go!!), it takes over 4 hours to infuse so I get to be here for awhile. My body should be producing Enzyme by now but they want a total of 8 treatments post transplant to make sure my body can catch up on cleaning out the trash in my body. I will still have some build up in places like my joints that don't completely clean out and may need work down the line, but hopefully my body will make up for lost time. I was suppose to have Platelets today as well but my counts jumped from 11 to 23 over night. Wow, praise the Lord! So no platelets today. All my other counts dropped and my Hemoglobin (blood) went from 8.7 to 7.4 so I do get some of that today. Over all I am feeling pretty good and have been really helpful with the nurses doing my vitals. I am joyful and friendly even though I seem to be a little weak, I know I will get stronger over time.

I really enjoy being back with my family even though it is a small room, our single wide mobile home will seem like a mansion when we get back...but it will be home and I can't wait. We will have to be very careful for the next year or so till my body gets really strong. I will have to wear my blue mask for a year or more as well, even at home just to help my body fight germs. But like my daddy says, God is the only one that keeps us in health or sickness so we just keep trusting the Lord to keep. We have been blessed with much health since we have been here and we Praise the Lord for that.

I still don't want to eat much but I am drinking well and I know that I will want to eat in time. I have enjoyed all of my "hurler family" friends that I have met here, and everyone else as well. Thank you for your love and prayers we miss you all and hope you have a wonderful day!



Hugs,

Josiah

+26 doing great!

Hello everyone,
Today I am feeling much better. I still have not eaten much but for lunch I ate 5 crackers (all I have had for over 24hrs.) and now I have a little energy to play. I went to clinic this morning and I got a good report. My platelets and hemoglobin are a little low (will get platelets with enzyme tomorrow), but my WBC is up a little so my body is getting a little better. I am starting to get back to normal Si, enjoying playing and helping cut daddy's hair. :) I love being with my family! Every time I go to the Dr. and come home James asks "bubby home too?" James really takes care of me and makes sure I have what I need, even my barf bucket. I still have to go to the clinic everyday to get my blood checked but I am just on maintenance check ups and hopefully the time will go by without any fevers. Thank you all again for all your prayers, we serve a great God who takes care of all our needs and boy has He provided abundantly. Praise the Lord!
Love to all,

Josiah

+25 a little tired today

Hello,

Last night we had an interesting thing happen. We got my TPN and my Antibiotic hooked up and I was all ready for bed. I had a pretty good day and even eaten a little. When I got into bed my line got caught and pulled out of my chest a little. The stitches pulled out and so did my line about 1/4-1/2", it really hurt and bled. When daddy called the Dr. they said to unhook the

medicine, stop the bleeding, put a new bandage on and wait till morning for an x-ray to make sure all is OK.

Well, despite all the excitement, the Lord really blessed and everything was fine. The x-ray showed it was pulled a little but will still work. Praise the Lord! All my blood work came back good and my blood pressure and temperature is even down today. My Kidney test showed that my levels were going up a little but that just means more medicine. I have felt a little weaker today. I can't get in the sun so when mommy, daddy and I walk to the Dr. I have to have a blanket over me when they push me in my stroller. The sun can cause a GVHD flare up. I have been really tired and in the evenings I just rest in my crib with my TV and today I didn't even eat anything like I have been trying to do lately. I do like to go Bye-bye, but it's hard to breathe around my mask and I can't take it off when we are out. So we don't go very many places outside of the RMcD house. We did get a visitor on Sunday afternoon. Mr.PJ and Mrs. Ester came and visited and played ball with my sisters and even brought some frozen Custard. The custard is like really good ice cream and mommy is saving some for me for when I feel like eating. It was so fun to have them here even though it was only for a short time, I am not suppose to have to many visitors but it was nice to see someone from home ( well sorta home :). My friend Torie and I sure appreciate all your prayers. She is eating really good ( I wish I had her appetite), but having a hard time with her oral meds. Her Grandma said that she might get to come home by the weekend, it would sure be nice to see her again. Also, my friend Wyatt seems to be in a lot of pain. He had back surgery last week and got to come home today, but he was so sad... please pray the Lord would make him stronger and not in so much pain. We have met a lot of friends here at the RMcDonald house and we pray for them all every night. So many different kinds of people with so much hurt, sometimes mommy wonders what God has in all this. We praise the Lord that He is in control even when we can't see the big picture. Lots of love sent to everyone. Thank you for all of you Love, prayers and encouraging words sent our way, we praise the Lord for each and everyone of you!!

Tired Hugs,

Josiah