+24 still out and Pa-Paw's Birthday

Hello everyone,
Thank you all for your encouraging notes on my last blog. My family and I love to read all the notes people write, makes us know that we are not alone in this. Thank you! I am still doing well... I have had a few very busy days so it takes a little while to let ya'll know. The day I got out of the hospital, I was on my way out when I threw up and blew my GI tube out several inches. The nurse had to push it back in and take another x-ray. This time it was in the right place but it delayed our trip out. I didn't mind taking an extra rest there as long as I got to go home at the end of the day. I had so much medicine to take home and when we got to the RMcDonald house I had even more waiting for me. I still loved being home with my family. I have to go to the clinic everyday to get everything checked. So far no fevers and my Blood pressure is back down. I have had trouble keeping meds and food down but I have been eating more and hopefully I will be off my TPN soon.

Today is also my Pa-Paw's birthday! As much as we miss everyone, we have been blessed to have my moms dad to stay with us up here. He told me that the best birthday present he could get would be me to be home to celebrate it. We all praise the Lord that I am here to bless Pa-Paw on his special day.

We are home for now and will be for here in Minnesota for a minimum of 100 days post transplant. I am +24 today, so we will be here for awhile. Hopefully it will be an uneventful time, as we have learned "boring is good!" Hopefully my friend Torie will be home soon so that I can play and we can grow strong together. I really am thankful for all your prayers for both of us, it is such a blessing!

Love to all,

Josiah

+22 Discharge Day!!! :)

I am leaving!! Hooray!

The doctors just came in and gave their blessing for me to go. I still need to have some platelets before I go and it will take them a couple hours to fill all my medicine anyway. So now off I go for another chapter in my journey. I will still need to wear my mask all the time (that's not in my room) and go to clinic everyday. We have many hurdles to still over come (like taking all this medicine), but I have come a long way. We pray that I get no fevers! They tell us there is a 90% chance of coming back and we want to be in that 10% that doesn't. So keep praying for me and I hope that we get to come see ya'll soon. Thank you again for all the encouragement you have sent for me and my family (and Miss Torie!!)... it has been a blessing and I know it would of been a lot harder without you!
I love you all!!

Josiah

+21

Hello again,

I am still here in my hospital room, at least till tomorrow. I am doing well, all my counts went up on there own today except platelets (just down to 12). My blood pressure seems to keep going up so they are trying a different medicine and want to watch me over night. So for now all the nurses are stuck with me but hopefully not for long. I did get to go for a walk today again

in the hall. All the doctors thought I was so funny walking with my pole and my cart with my portable TV on the cart. See, my therapist (OT) came in to play and I didn't want to walk ,I wanted to watch TV or play the computer. I was kinda tired from still barfing meds (even with this tube up my nose :( ) several times. So to encourage me to walk she put my TV on my cart and let me loose. I loved it and I just started cruising... just a little crazy steering though since I didn't watch where I was going. So now I am back for a nap. They are also watching me for a fever (right now under 100 but had gone up to 100.3), they keep you for an extra 48hrs. past your fever of over 100.5. Over all I am doing good and hope to be out soon. My friend Torie is doing so much better she ate eggs, sausage and pears for breakfast. You have to check out her website and smile at her picture. It makes us all smile to know that Torie is feeling some better. Thank you again for all your prayers and I hope to report of a discharge tomorrow.
Love to all,

Josiah

+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.

+18 another visit!

Hello everyone,

I am so excited, I got another visit today. I haven't seen Sara for almost 3weeks. I just smiled and she made me laugh. Her and daddy had to leave but I got to roam the halls! My nurse found me a convertible to ride. I know its pink but its the only one they
had and a guys gotta do what a guys gotta do ( just don't tell daddy :)). I also got to go shopping, boy that was fun (can you tell that mommy was with me today?). It really wore my out though. So now I am back in my bed for a good nap. Pray for my friend Torie that she gets better soon so she can come play. I think she would like my car :) !

My WBC is down today to 12.5 but they took me off my G-CSF (helps my WB grow) and they said that is normal. My Hemoglobin dropped as well to 8.8, as did my platelets to 26 (so my polka dots are coming back). I had a slight fever on and off yesterday but today seem to be doing really well. My body is trying to get stronger on its own without extra meds and they said if I can hold down all my oral meds (barfed 2x's yesterday), I can go home (RMD House) by the weekend. Yeah!! Thank you all for your prayers!! Please don't stop .... I'm not done yet. :)

Hugs and kisses,

Josiah

2nd post for today

Hey Everyone,
Just wanted to share some pictures of my outing with ya'll. After my long night, I was feeling a little better this morning. I have ups and downs a lot so we made the most of one of my "Up" times. Boy did I have fun and James even got to go with me!! :) My only problem was I didn't want to go back in my room and my nurse said I had to be back by two for my medicine. Maybe I can go out again tomorrow. Thank you for praying!


Love,
Josiah

+17 visit from Jay

Hello everyone,

I still have not got to go on my wagon ride. Yesterday after my nap I didn't feel good. Everything looked OK, but I hurt and was sick to my tummy. It got worse through the evening and my nurses were so busy I didn't get any medicine till around 9:00pm. The medicine helped till it wore off 4 hours later and we got some more. So I did get a little sleep last night and woke up this morning feeling a little better. My bubby Jay came and visited me, I sat

up and gave him a big smile. I miss him so much! James got to stay while daddy went to a class on how to give me all my meds when I get out. I loved having James here, I just watched him and laughed. Finally I got so tired I had to take a nap. But I am doing better. The Doctors are taking me off my CSF which has helped my WBC and they expect them to drop a little till my body realizes it has to do it all on its own. My WBC were 21.5 and ABN 14.4..Yeah! I hope I continue to feel better and get strength. Thank you for your prayers!

Love,
Josiah

+16 Feeling more like myself

Good morning,

I have smiles for you this morning! Mommy was so happy when she came in to see me and I gave her a big smile. I am feeling more like myself since some of my meds are gone. I didn't go for my wagon ride yesterday, I was still really tired and not quite up to it. The Doctors keep saying I can get out and I am up to it this morning.... but they couldn't find me a mask or a wagon. :( Oh, well I 'll take a little nap and maybe this afternoon I'll go out. I am feeling so much better, thank you all for your prayers. My WBC is 16.1 and ABN11.3! That is really good... just waiting for our test next week to see who's they are and we are trusting the Lord they are My new Enzyme producing cells. I am holding down more oral meds and even took a couple bites of pudding yesterday. I think my system is starting to get the hang of this. We can't tell you enough how much we appreciate your prayers and encouragement. My sisters really enjoyed all the Valentine packages that were sent and even got to decorate some cookies from Aunt Kendra and Uncle Nathanael. I wish I could try one... maybe next time. I still have a lot of swelling but the Dr. says it will take a while to go away. My blood pressure is up a little but everything else is going really well. We still have the thought to get to go to the Ronald McDonald house by next weekend. We will see what the Lord has for us this week. Please remember Miss Torie, we have been on this journey together and we need Jesus to touch her body like He has mine.

Lots of smiles for you today,

Josiah

+15 ...WBCount 11.6!

Good Morning,
And a very good morning it is! My counts are up to 11.6... Ya!!! And of that I am 68% engrafted...Wow! We just keep praising the Lord. We will probably post more later but wanted to share the good news! My main prayer request right now is... 1.my swelling/breathing. Still not good ( has gotten better though). 2.They test the bone marrow to see if what has grown is mine or James on day +21 (just 6more days). That is really important so we don't have to go through this again. Also, (#3)I need to be able to take all my medicines orally, and there are a lot. So I will be working on that in the next couple days. I also (#4)need to start eating... the doctors said I will more than likely get out with the TPN (nutrition line), but it will be really good if I would start eating some on my own ( haven't for days). Oh, and a little thing called my blood pressure, it is still really high. It comes down with medicine but goes right back up. Sounds like a lot but I have come so far I know these details are not difficult for God. I may even get to go for a ride in the hall today. I wish I could go with my friend Torie, I miss her. I miss a lot of people and I am going to miss my Uncle's birthday so I want to tell him ...Happy Birthday Uncle Nathanael!! I am so sorry I will miss your birthday, but I will get better soon and come home and party with you, OK?!
Love to all,
Josiah

+14 gettin there

Hello Si here, just letting everyone know I am doing really good! Right now I am sleeping a lot because my body is trying so hard to get better. When I am awake I am very grumpy and I don't understand why I don't like anyone right now. The Doctors gave me a medicine for the swelling in my throat and it worked really well, I come off the oxygen when I am awake and need just a little when sleeping. They took me off the medicine early (suppose to have min of 3 days) because I am doing better and they think it is what is making me so grouchy. I feel more like Oscar the Grouch than Elmo. I had my 2nd ERT (21 total) Wednesday and it went perfectly. My swelling is slowly getting better but I still am very puffy. My fever is gone now for over two days, and I have taken oral medicine without throwing up. My blood pressure is up a little but I have been able to take the medicine (oral) to help me. My bum is completely better as is my spots. Mommy will post some numbers at the bottom for those who want to know. I just know that I am slowly getting better. I know that a lot of people are praying for me and the Lord is hearing our prayers. Thank you Lord! I may be able to go for a stroll in the Hall by Saturday and possible out by middle of next week. Woo Hoo! Can't wait! Always want to remind everyone of my friend Torie, she isn't feeling well and I want to be able to play with her soon. She needs Jesus to touch her body. Besides me being so grumpy I am sending lots of hugs to everyone, I miss you all! We still have a ways to go but we are gettin there!

Love,

Josiah

WBcount 4.1 YA!

Platelets 46 & holding

Weight 15.5kg (still holding the liquids)

Neutrophils 2.5 and of that I am 61% engrafted!

They wait till day +21 to test if the marrow that is growing is mine or James. Hopefully its James and now Mine!:)

Don't worry if you don't understand this..took mommy and daddy a long time to get it (and still don't to much). Just know I am doing really well and we are so thankful to God!

+13 turning a corner!

Hello,
We wanted to let everyone know last night that I was doing better but we had a little computer problem (now fixed by daddy, aren't daddies great!). Thank you for the prayers!! My Temp has been down now for over 24hrs., heart rate is down and my Breathing is doing better. They gave me a steroid for my throat and that really seems to be helping, it does make me very cranky though. The yeast is still in my throat but I don't have to take the oral medicine, the ones I am already on should take care of it. Being as I don't have any oral meds right now I haven't been throwing up lately either. Just that makes me feel some better. My WB count is still 1.1 (stayed the same), but of that I am 43% engrafted and my Hemoglobin is raising on it's own. I did need some platelets again this morning but my spots are going away. Right now the Doctors are really happy at my progress from yesterday morning, and we are just so Thankful to God.
Love and hugs to all,
Josiah
P.s. please continue to pray for Torie. We were blessed with a related Donor which tends to allow my body to heal faster. Torie had a cord blood transplant, which is good but she is a little behind me and is in great need of prayer as well. Thank you!

+12..WB count 1.1!!

Hello to all,

This morning my W.B.count is 1.1 YEAH! Even though this is so encouraging news I am starting to feel a little worse. Worse? How can this be... the Doctors said that my body has come back to life and is now freaking out! The white blood cells are working over time to fix all that is wrong and therefore I will feel a little worse before I get better. My CMV is gone again but I have to stay on the Anti-Viral for 8wks. to make sure it stays away. Also, I now have yeast growing in my throat (probably from all the antibiotics), and have to have another oral medicine. I can't even keep Tylenol down for my fevers I don't think another one is going to stay down. :( My Bum is feeling a lot better, it has scabs on it now which is really good (my body is trying to fix it)! My breathing is getting worse, I had to have my Oxygen turned up again last night. My CT test was cancelled because they don't think the problem is my lungs but my throat is swelling shut. Please pray that my swelling goes down ( one of the biggest requests right now)! I will be on a new medicine to help with the swelling and an emergency dose to help me breathe. If it doesn't get better the Doctors want to intubate anyway. So PRAY, PRAY, PRAY! The Lord has brought me this far I know He has me in His hands and I just pray that my Throat will open so I can breathe. I don't understand why I feel so horrible but I am glad to know that

everyone is praying. Mommy didn't want to take another picture of me feeling cruddy so we put some fun ones of my family on here. Hopefully, I will be doing well soon and give lots of smiles for fun pictures. Thank you for praying for my friend Torie, her counts came in at .1 yesterday YEAH! The journey isn't over for us but we are staying strong thanks to your prayers!

Hugs and Kisses,
Si

"This is the day that the Lord has made, we will rejoice and be glad in it" Psalm 18:24

P.s. As you can see Jay loves being in Pictures and talking to family and friends on the phone. He prays for his "SI, Grandma Dee and Me-ma,Pa to stay safe and come soon" everynight. :)

Another update

Doctors just came in and said that I am over all doing ok. All that is going on is typical and that hopefully I am on the mend. My WB count is .5 and of that 20% is engrafted!! WooHoo! Praise the Lord! I am still not that comfortable with fever, swelling and nausea but encouraged that my body is trying to make it better! My CT scan was cancelled for today but is tentatively scheduled for Wednesday. The Dr. said that if I am doing better by Wed. that I don't have to have the test. We don't want the test because they changed the date so they could intubate me for the sedation. I don't do well with sedation but if they intubate me with all the swelling I will probably have to go to the PICU. We don't want a set back so we are praying for a healthier me so that I don't have to have the CT. Thank you for your prayers!

Love to all,
Josiah

Quick update on +11

Good Morning,
Last night was about the same as usual. I am still swelling and looking like a busted can of biscuits, but everyone still thinks I look cute. I am gaining swelling all the time and it is putting pressure on my lungs. I have a CT scan today that they have to sedate me for. I need much prayer for that because my airway is still very swollen and gunky. They have turned up my oxygen several time last night just to keep me in the 90's and I don't do well with sedation. My fever isn't going down to much even with Tylenol but its not to bad, I have kept my Tylenol down the last two times but I am still very nauseated. My WB count hasn't come in yet but we are hopeful. Torie and I have the same test today so just please keep praying. Thank you all for the kind notes and Valentine gifts. It is really encouraging... I even got a Valentine video from our friends the Goke family. Boy, do I love videos of people talking to me, its like they are here visiting. Oh, and please pray for Grandpa and Grandma Linda for safe travel as they go home... lots of snow predicted.

Kisses,
Si

+10 & WB count .2!!

Hello,

I had to share with everyone that my White blood count came in this morning at .2!!! Yeah!! It is small but my body is working so hard that the Doctors said that I am using some of them up. My body is actually trying to fight my infections. The Lord is so good. Right after my Grandma Dee asked for prayer we saw a little improvement and I sat up here with daddy for a quick pic. As you can see I still need Lasix (SP?) to help get the fluid out, that is one reason I am not breathing well (lots of fluid on my lungs). I set off the alarms for my Oxygen all night so today they put a little oxygen up my nose and I am able to breathe a little better when I sleep (daddy didn't get much sleep either). They also put me on an IV blood pressure med so I am holding steady there. My fever does spike pretty high but my time between Tylenol is spreading out where I don't have to have it ever 4hrs. I can't really keep it down anyway but God is giving grace when I need it most. I am throwing up a lot and they are trying a different Anti-nausea, but there is not as much blood in it, so that is good. I did need more platelets last night and they gave me a little extra because of all the blood I have thrown up. I'll probably need Hemoglobin today but hopefully I am on the road to recovery. Please keep praying !!! Thank you all! Also, if you haven't checked out my friend Torie's site please do. She is not doing well like me and needs much prayer!

Happy Valentine's day everyone, Lots of Love sent your way!

from a Pillsbury Dough looking boy,

Josiah

P.s. Another reason for prayer that I need is I have a test tomorrow that I will need to be sedated for, with my swelling already bad I will need to be watched very close. Also, my CO2 is climbing being on oxygen.

Urgent Call For Prayer

Hi, this is "Grandma Dee" posting for Rachael an urgent request for prayer. I know that so many of you have been so faithful in praying for Josiah through this time of trial but if we could be so bold as to ask for 'double time' prayer the next few days. This is truly the valley of this procedure, and is medically expected to be the most difficult time of the entire bone marrow transplant. Yesterday, it was within only a few hours of putting out prayer requests that we saw such an improvement! Well, we need another shot of prayer!

Josiah's little body is fighting a giant right now, with little to no natural resources to fight with. That's why we are continually asking for your prayers, because we know the Lord is more than able to carry him through this. The doctors say that there should be signs (however small) of improvement in about 4-5 days. However, these are the days he needs the most prayer.

Immediate request:
Right now, as of 4:30 pm Saturday, Josiah's fever is spiking, and cannot keep any of the traditional medicines down to help his body bring down the fever. He throws everything up and it's much more irritating and painful for his already swollen airways.

Specifically, here are some details to pray for:

• Control of fever
• Relief from the intense swelling from water retention
• Rapid growth of his new enzyme producing cells
• Healing for the awful blisters on his 'bum' and to protect them from infection
• Healing of the blood infection and CMV
• An increase of blood platelets
• Relief of the pain from all this
• Ability to keep what's needed down (medicine, food, liquids)
• Wisdom for the medical staff (and that the Lord would choose them...nursing care varies WIDELY)
• Peace and comfort for Rachael and Jim, keep them healthy. They get very little sleep lately, because Josiah isn't sleeping much at night.

I'm sure Rachael could add to this list and I apologize if I missed something vital. It's reassuring that the Lord knows what we need even before we ask. What a workout the Lord is giving them in the TRUST department!

Thank you, the incredible support you have shown this family has blessed them beyond words. This is a burden they could never have carried alone.

+9 update

Well I was going to write and tell everyone that the Dr. worked out my medicine and I was stable. But all I want to do is ask Jesus to hold my hand... at least that is what mommy keeps saying every time I throw up. I seem to be doing that a lot this afternoon and it just keeps getting more blood in it. My fever is back with a vengeance and I can't keep the Tylenol down to help it. Therefore with my fever comes high blood pressure and heart rate. My breathing is OK when I am up and around but since I don't feel like sitting up this afternoon my oxygen keeps going down in the 80's. I was used to that before my Tonsil surgery but since then have had good Oxygen (till now). The Doctors are just watching and mommy and daddy are praying. I needed some antibodies (IVIG)for my infection and this flare up could be a reaction to that. Right now I am miserable and pray that God will continue to heal my body and bring my new cells soon. Pray for my nurses they have a lot to do, they need much patients and wisdom. I wish every time I woke up there wasn't a new nurse in here but at least I have mommy or daddy with me and I love holding their hand. Thank you for your continued prayer.
Josiah and family

Prayer works!

Good evening,
Thank you all for praying, I do feel a little better since this morning. I have not had to go to Intensive Care (PICU) like the Doctors had mentioned this morning. Mommy and daddy know it is because everyone came together and prayed. The Lord hears! Please pray for my fever and my swelling...I hope that I sleep well tonight and my body can over come this infection and the swelling goes down so I can breathe better. Then I will be doing great. Although, when I sleep my breathing seems to get a lot worse. I am still being monitored really close and being given lots of medicine (& barfing oral meds). I am doing better from this morning so please don't stop praying! My family and I covet your prayers and I know that the Lord is hearing! Please also pray for Torie, she is having a rough time like me and needs much prayer as well.... I could never thank you enough. I guess you could say "I thank you with my whole being". Lots of Love sent to everyone.

Goodnight, we will talk tomorrow.
Josiah

+8 not doing great

Hello to all,

I wish I had a better picture for you today but I am not feeling so well. My platelet count went down to 6 again yesterday and I had to have more. Also, my Hemoglobin was 7.8 this morning so I am getting more of that as well. Pray for good blood. My CMV has come back ( mommy wonders if it is from some of this blood that was donated, they don't screen for CMV it's harmless to most), so I am on my Bad Anti-Viral again. Also, my test came back that I have an infection in my blood, so I am on an antibiotic again as well. In my picture I am actually awake and watching my shows, which is encouraging to mommy and daddy because I haven't even wanted to watch my shows. But as you can tell I have a lot of fluid swelling so I have to be on a medicine to help me get that out. The extra fluid can build around my lungs, and we don't want that. My blood pressure is staying a little high, but they say that could be from the anti-viral and the extra fluid(but giving extra medicine for that as well). I have been barfing my oral meds which is hard when I need the Tylenol for my fevers. My fever is down a little right now (only by prayer to 98.7! :) but has been staying over 101-103. My nurses are trying to juggle all the medicine that I need so please pray for patients and wisdom for them. I have 4 pumps with many lines coming into me and they are always full. Yikes! My breathing continues to be rough and I am trying so hard to breathe. A lot of this is side effects from the Chemo and we just need to get passed this. I am on a continual drip of Morphine for the pain which is helping me to rest a little. We continue to trust that I am in God's hands and continue to ask for your love and prayers. I am very weak and need the encouragement. Thank you all for being there for me and my family. We thank the Lord for you all!!

Josiah and family

P.s. Grandpa and Grandma Linda are coming to visit this weekend, pray for a safe trip as they drive so many hours! I wish I could go play with them, but look forward to it in the near future! We just need my cells to grow ( they have seen them come in as soon as day +11..) Jesus please help my new enzyme producing cells to grow fast!

+7 Another day done

Hello again,

Thank you all for your prayers, we will especially need them in the next few days to come. I am very weak right now and trying to rest a lot. Last night I had my 20th ERT, I will have 7 more before I am done. I ended up getting a fever and not resting well at all ( all night). I had to have an x-ray of my lungs and put on 2 antibiotics. They did find a little "junk" in my right lung but nothing serious just something to watch. My fever is still staying up even with Tylenol and I needed my first dose of Morphine last night. Mommy and daddy are hoping that it was a reaction to my ERT and that I will do a little better soon. I am in a time where my body is trying to restart itself and I am so worn out. The Lord has kept in all this and we are really thankful. The Dr. said that I am right on schedule but I still will not start to improve for another week or so.... that is why we need some extra prayer right now. Even though I am weak and my bum still hurts (and everything else), I still wanted to get out of bed and color and watch my "Hi to Si" videos on the computer. Didn't last to long, but everyone was encouraged that I even wanted to get down. I look forward to getting better and being able to play more, the OT people have some pretty cool toys! Also, please remember my friend Torie, she is in the midst of this as well and feels pretty poorly. We all love the encouraging notes that are sent and am so very thankful God has blessed us with wonderful family and friends.

Hugs and tired kisses,

Josiah

Day +6 (taking it one day at a time)

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

The Lord helps us to rejoice in our trials! Those who don't know the Lord, I don't know how you do it!?

I pray that everyone out there is doing well.
I had a rougher 24hours. My platelet count went down to 6 this morning and I had to have some blood. It went pretty good but I still didn't sleep well last night. I got another bath today, my hair was shedding so bad we had to get a shave and then get cleaned up. I am a baldy now!! Everyone up here says that bald is in. :) I am more tired and weak today. The Dr. said that it won't get better till my counts start coming in around day 15-21 (I am on day 6). Trusting the Lord moment by moment. I do still have a sore bottom, please pray that infection stays away. They say that the sores on my bottom are a high risk to get infection in me. It is not infected right now and we ask the Lord to keep it that way! So

far my mouth doesn't have sores, but it is swollen a little. The Dr. said that I am still doing really well, this is all part of it. Sometimes mommy wonders if this was the right decision, but then we have to trust the Lord for that as well! We still have a lot of snow. My sisters are just waiting to go play in it, it's so pretty and white. I miss everyone, thank you for all the notes of encouragement and prayers! You will never know how much they are appreciated!

Love to all, Josiah

+5 and still going

Hi everyone,

The Dr. is taking me off of the Bad Anti-viral medicine today!! Yeah! They are switching it to a different one that is not so bad for my body since I don't have CMV anymore. I still need to be on a anti viral in case the CMV pops up again while I have no immune system, but this one is not so bad. My blood pressure is up a little but they say that is probably from this hard Anti-viral med and it should stay down now. That means one less blood pressure medicine. Praise the Lord! I had a really good night last night and even kept down my oral medicine this morning. I wanted to get down and play and lasted for 1/2 hour before I got to shaky. I am on +5 days and doing great. My hair is falling out in chunks (mommy thought I didn't have much hair till it started falling out and getting all over everything and there is still more to go), it is a little itchy but it doesn't bother me much. I do have a pretty bad sore bottom, they say it is the break down from my organs (and that is normal). Please pray that the Lord will keep all parts of me in this process and my

bottom won't hurt so bad. My mouth seems to be pretty good, no sores we can see but I still like to suck on my fingers (which I never use to do). So besides by bum and being a little weak, you would never know I had just killed my immune system and am trying to restart it. My platelet count is 15 and Hemoglobin 9.9, Dr. says that this is part of my blood and I may need more soon but not yet. I do seem to get cold easy, but mommy likes to keep the room nice and warm (daddy not so much :). I rest well and love the warm blankets! The Doctors and nurses still say that I am doing so amazingly good, we give God all the glory. Thank you again for your continued prayers! Ps. Thank you to my friend Torie for the fun Elmo book. I love it!

Day +4

Hello again,

Just wanted to say Hi. I did really good last night and got some sleep (so did daddy :). This morning I am not keeping my Oral meds down again. They had to give me my Blood pressure medicine 3x, yuck! My blood pressure seems to go up a little during the day so they give me extra medicine to help that ( but I think anyone who has nurses around trying to give them oral meds when their tummy hurt would have higher blood pressure too:). Over all doing well! We continue to ask the Lord to bless everyday that I would get stronger, my cells would grow and my body would accept it. That is a lot to think about for a little guy! So I just rest and rest. I still love getting down and playing, a little more shaky each day and I only last a few minutes at a time. My platelets are down to 20, they don't give me extra blood till they go down to 10, (hemoglobin at 10). My white blood count is 0. So far so good, I do still have the dots from head to toe (Dr. says its from my platelet count being low),but my Elmo pink is gone. Mommy has noticed my hair falling out a little at a time, but I didn't have much to begin with.

We got a lot of snow today. I wish I could go play in it but the Dr. said, "no sledding for you mister". Bummer, maybe when I get better James and I can go make a snowman! Mommy says that James is a little sore lately but it doesn't seem to get him down to much, just a little more fussy. Glad I don't have to hear that but I do miss playing with him! I love to watch the Video's people have sent to me over the Internet. Like my uncles and Grandma Dee said Hi to me ( http://www.upsidedownsyndrome.blogspot.com/), I watch it over and over clapping and waving bye! I miss everyone so much. You could send me a video, I would love to say Hi to you!! God bless you all and thank you for your continued prayers!

Day +3 Bath Day!

Howdy,

It's bath day and I love baths. I have been doing pretty good, just a little more tired. Mommy says my body is working really hard to put my new blood where it's suppose to be, so I am more tired. I also haven't been able to keep down my oral medicine so they gave me a different medicine to help my tummy feel better. Since my tummy is a little better I have been able to keep down my oral medicine and been feeling a little stronger.
We wanted to get all clean from all the puking so I got a real bath. Oh boy! I haven't had a real bath since I came into the hospital. It's a little hard to get started because you have to tape all my lines and my port on my tummy to keep water out. The nurse and mommy helped me and I loved it. I even got some play toys and got to splash. I didn't even want to get out but I was shaking so bad that mommy made me get out. They had some heated blankets to wrap me in and I just laid there enjoying the warmth. It was so nice to be clean. After I was dressed I got to take a nap with my special blanket that all my family and friends from church back in TN made me. I love it. I don't get to sleep with it often so we can keep it clean but it's always in the room to encourage us with prayers and love from home. I can't wait to go home. Hopefully I will get stronger really quick and be all well for our trip home. It probably won't be for several months but that is why things like my special blanket are so important to me. I wish ya'll could see it, mommy tried to take a picture to share with everyone! I send my love to everyone!

P.s. The nurses have not found any sores in my mouth yet,Praise the Lord! You will notice that I keep my hands in my mouth lately, tends to be something I like. Hopefully the sores will stay away!