+85 back on 5D

Just an update(more update on bottom)....

Josiah went for his Echo this morning and there was a lot of fluid around his heart. So much so they said that the pressure on the outside of the heart was greater then the pressure inside the heart and was slightly collapsing it. They put us back on 5D and pushed for operating room time. By God's grace Josiah is already in surgery and we pray that all will be well. The Dr. is only going to drain the fluid and pull the line not leave it in. Then wait till he wakes up and treat him with steroids to help keep the swelling and fluid down. Time will tell. We covet your prayers and trust the Lord will bless!! We will try and update once he is out of surgery.
Love to all,
Josiah and family

P.s. Josiah is out of surgery and the Doctor said everything went really well!! They only got 100ml of fluid which is less than they expected and recovered from anesthesia really nicely. Right now he is drinking tons and eating anything we give him (good time to push the good for you foods :) He still has to have an x-ray of his lungs tonight and another Echo in the Morning, but if all goes well they said we can go out of the hospital tomorrow as long as it doesn't look like the fluid is coming back. We see God's hand on Josiah so much and we know that He has blessed this whole process. Thank you all for praying and please continue. We will have several days of steroids and many more Echo's (at best) before we go home... but we know it is all in the Lord's timing.

God bless

+83 Pray for Si

"This is the day the Lord has made we will rejoice and be glad in it!" Psalm 118:24

Ok, so yesterday I went to clinic and they ordered 1 last x-ray before we leave. Just one of the final details we have to get done before we get to leave on Monday. This morning we had Speech therapy and when we got back I got to go love on Jerry (the house dog). While I was enjoying love from Jerry, mommy got a phone call from the Doctor. They say my CSA level was a little off ( no big deal ) and that my x-ray showed I have fluid building around my heart. Mommy thought the room was spinning... ok, we know the Lord is in control and He gives strength when we need it. Now we know that there are a couple BMT kids that have had this lately, including Tori ( that is what put her in the hospital a couple weeks back... she is doing good now :) and it can be a side effect of the chemo. It can be no big deal and go away on it's own or can increase and be severe. I have an Echo scheduled for Friday at 10:00am to see how severe the fluid is and if it is increasing. Please pray!! Pray for peace while we wait for our news and mainly pray for my little body as it continues to heal from this horrible process that God has turned for good. We are not sure yet if this will delay our departure but we do have a few more appointments on Monday and we will see then. Thank you all for being here for my family and I ... it brings much peace to know we have family and friends following our journey and lifting us up in prayer.

May God bless your evening,

Josiah and family

+81 one week and counting till home!!

Hello to all,

Just had to share our good news with you. We were told we could leave early and now we have a departure time of next Monday... one week and counting till we make our journey home. Yeah!! Praise the Lord He has brought us so far and I am doing really well! I am turning really furry from my CSA, (I am looking like a cute little monkey). My labs looked good today, a little lower than last week but still in a good range. My Magnesium went up from 1.3 to 1.4 so that is better than going down. My enzyme tests finally came back as well and my levels went from 0 to a normal range. Praise the Lord!! Why did we ever worry in the first place, I guess the Lord needed us to fully trust Him for the outcome and stay on our knees in prayer. We continue to pray for our friends here at the Ronald McDonald house and trust the Lord has each of them in His hands as well. Our Miss Torie looks great and seems to be doing better, hopefully she won't be here much longer either but please continue to pray for this sweet little girl and her continued journey.

I do have some details to cover this week.... therapies, more blood work, oral meds and an x-ray. But we know this will all come together and we will be on our way home soon. We are all looking forward to finally being home. Please pray for an uneventful journey home ( unlike our trip here), especially for health for Josiah as he goes into unexplored regions. We are so thankful for your encouragement and prayers .... we are thankful for everything!!

God bless,
Josiah and family

+79 Going to the Science Museum

Hello,
I got to get out today even though it was raining. My family and I went and met up with a friend of ours (Stacy) and had fun at the Science Museum. I loved being able to run around and get into things. My sisters loved playing and learning, it was so much fun! We enjoyed being able to spend time with Stacy as well... especially James who soaked up all the attention. We got back around lunch time and had an enjoyable afternoon, at least I got a nap and everyone else enjoyed the quiet. Hope everyone has a wonderful Lord's Day tomorrow and we'll talk on Monday.

God bless,
Josiah and family

+78 no NG tube!

Hey everyone,

I am looking more and more like myself... just a little more hair. My NG tube is gone!! Mommy and daddy are trying to give me more oral medicine so I could get rid of the tube and this morning I started to get sick and just pulled it right out. Guess I wanted it out more than everyone thought, just please keep praying that I will take all my oral meds so I don't have to revisit clinic for a new tube. So far so good but I am on so much Magnesium that it's a little hard. I also need my magnesium levels to come up. But otherwise I am still doing really good. Also, thank you for praying for Torie... she is home and doing better. Her departure date to go home is only in a few weeks!!! We hope that we will get to go home soon too, maybe even a little early. I would of loved to meet Miss. Rylie ( another little one with hurlers that is on her 2year post BMT), but I think that we may break out of here before then. Hope Rylie and her family have a wonderful trip and maybe we will go out to Colorado and meet up with her and Miss Torie sometime (that is where both those families are from). Looking forward to a wonderful weekend.

Love to all,

Josiah and family

+77 Praising the Lord!

Dear family and friends,

Sorry it has been a couple of days since I last wrote. It's about the same here but we have had several friends not doing so well, so we have been praying, praying,praying!! Our Miss Torie is doing better and she was on room air yesterday. Her pleural effusion ( the fluid build up on her heart and lungs) is resolving and she is off her antibiotics as well, please keep her in your prayers for she is still in the hospital though.

As for me I am doing great!! I am eating lots (2 1/2eggs for breakfast and some cheese crakers) and even choosing some healthier foods (eggs,banana, etc).... see how much prayer works!! One prayer request I have is that my Magnesium levels would come up. They have tripled my oral medicine and it is still at 1.3... hope I don't have another infusion any time soon. Mommy talked to the doctor about foods that are high in mag. but the doctor said that you get so little magnesium from your food I could eat them all day and not touch my numbers. So please keep praying for that. My therapist all say that I am getting stronger and learning so well, I am even babbling for long periods of time. I enjoy hearing my voice and am trying to communicate more with signs and noises. Actually, I am doing so well that there is a rumor I might get to go home a little early. As much as we will miss our home away from home and the friends that we have made here, it will be so nice to go home!! Please pray for all the little details that need to be worked out.

We hope to go on an outing this weekend and I will let you know on Saturday how that went and what our day was like. Hopefully all news is good news. Missing everyone so much, lots of love sent to all.

Josiah

P.S. We have excellent news! Miss Torie is doing much better and has returned home this evening, Praise the Lord!!! Please continue to pray for all of us here.

+74 numbers slightly up

Hello,
Hope everyone had a good weekend. We had beautiful weather and tried to go visit the Kelly farm but it was closed, maybe next week. We had clinic today and my numbers came up just a little (which is better than going down). My Magnesium was still low even after my 2 hour infusion on Friday. So they upped my oral meds and hopefully it will come up without further intervention. I am also eating much better. Mr. Jerry said that I don't need my

Peptamen (liquid feed in my tube) anymore if I keep doing well. He also said if we can get off the Potassium and I can take more medicine orally that we can pull my NG tube in a week or so!! Yeah, I won't know what to think about that! I do need to get more protein in my diet but I have started eating so much that they don't think it should be a problem. So I am doing great, Praise the Lord!!

While your here I do want to ask if you would continue to pray for my friend Torie. I know I always ask this but she is like family now and she really needs our prayers!! She is back in the hospital (on 5D) for fluid building up on her heart. She also has fluid on her lungs now and is on full oxygen to help her breathe. (check her blog for more updates)Please continue to pray for God's grace in all aspects of this sweet girl life and her family (especially energy for her grandma's who are pulling all nighters again!) We so covet your prayers and encouragements, thank you so much for your love.... I hope to come home soon!!!!!

Josiah

+71 another infusion

Hello to all,

I am just sitting here in the infusion room for a 2 hour infusion of Magnesium. Mommy and daddy are here too and just thought we would take a moment and share some prayer requests. I have been doing pretty good but again this morning my electrolytes were crazy and even though I am getting Mag orally it isn't enough. Hopefully this infusion boost will get me up in normal range and the oral medicine will keep me there. Also my weight is down slightly but Jerry said to see how the weekend goes. Please pray that I will eat more and get my energy up. I have been sleeping well but didn't want daddy to wake me up at 7:00am this morning for Speech therapy and clinic. So to tell him I didn't like him waking me up I was grumpy all morning, including at therapy. So again today I got out of therapy. Anyone know of a good speech therapist around Hartsville (north of Nashville TN)? I am sure that since I don't talk I will need lots of help. James on the other hand is talking for me and taking really good care of me. He is my best friend and the Lord has really blessed me with having such a good big brother to play with.

Not only do I need prayer but I am sure ya'll have on going lists of requests as well... we have a list of others to pray for every night and the Lord knows all our requests even if they are never spoken. Please know we pray for you all and ask God to bless each and everyone of you. Ya'll have been a really big blessing to me and my family. One of the many is for my friend Torie she is getting her echo done today to see if the fluid is still around her heart ( see her blog for more info). Please always keep this family in your prayers, I know He has a plan for them that is bigger than we can see.

Lots of love to all,

Josiah and family

+70 a little down

Hello,

Just wanted to let everyone know that I went to clinic yesterday. When I got my blood work back all my electrolytes were crazy. They put me on magnesium and potassium and still have to come back on Friday. All my numbers went down also... platelet 62, WBC 5.3, Hemoglobin 10 and ABS 3.1. I know that is good for being on day 70 but they all went down and that is a little discouraging. Also, I got up and got sick this morning right before my PT and I didn't feel good so we didn't go. I do have clinic and Speech therapy on Friday. Over all I still have a good countenance and am still eating a little. Please keep praying for me to eat more good for me foods (don't want to go back on TPN) and get my oral meds down (even though we just added 2 more). Hope ya'll have a wonderful day.

Josiah

+68 NO TPN!!!

Hello again,

Hope everyone enjoyed their weekend. As you can see from my last post, we had a really nice weekend. Went back to clinic on Monday and told Mr. Jerry how much I have been eating and he said I could go off my TPN for a few days to see how I do. Please, Please, Please pray that I will continue to eat and drink well (pref. good for you stuff) and my electrolytes stay good. Then I won't have to go back on the TPN and that will be one more hurdle down.

The Dr said that I am doing great and that being 100% engrafted in both CD3 and CD15(fancy words for how they check the cells) is so rare this early that they are very surprised. My enzyme levels haven't come back yet but they don't have any reason why it shouldn't be normal since I have such good Donor cells. Praise the Lord! Can you believe how the Lord has taken care of me.... my family and I are so very thankful. I do still have a few hurdles to get over (oral meds, eating better, talking.. ect.) but we know that "He who began a good work in me will carry it to completion!" We do have therapy today (OT) and therapy every day for the rest of the week. Also, I do have to go back to clinic on Wed. just to make sure my body is doing good without the TPN. Other then that we are just enjoying this beautiful weather ( got to go outside with the family last night and play a little ball).

Please continue to pray for the other families here .... especially my friend Torie. She really needs her donor cells to grow. She looks great and is active and eating well but the Doctors keep giving them news of setbacks. Her grandma's are very discouraged but we know with God all things are possible! Please pray for this dear little girl and her family ( check her blog for updates). We cherish all the love and encouragement ya'll have shared with us, we are so thankful to the Lord for yet one more way He is taking care of me.

We miss you all!!

Josiah and family

P.s. sorry for the same picture again but you know mommy.... she just thinks this one is so cute. :)

+66 going to church & the zoo

Hello,
We all got to go to church this morning, even Pa-paw. We were all excited to be able to go and enjoy this beautiful day. It has been before my BMT that we were all able to enjoy a morning at church all together. We sure miss our church at home but the Lord has blessed with a great church family here in Minneapolis.
We also got to go to the zoo this afternoon. I didn't enjoy it to much because I had to keep my mask on and it was hard to breathe. Also, it was so sunny and I can't be in the sun so I had to keep a blanket over me a lot and it got really hot. When I did get to see the animals I wanted to pet them and when daddy said "no", I got really mad. The rest of the family was able to enjoy it though. Everyone up here in Minnesota can't believe how warm it is for this time of the year, we just say we wanted to share some of our TN weather.

I go back to clinic on Monday just for routine check ups and labs. Also, have therapy everyday this week (except Monday). I keep getting more energy and want to get into everything like a normal, almost 3 year old! I am even eating more.... I can't wait to tell Mr. Jerry that I ate (ok, healthy people don't read the next sentence...:) 3 Vienna sausages, 6chips, 10 Cheetos, 2 bites of applesauce, 1 bite of banana and 1/4 of a chocolate bar. Right now we are not worrying about what I eat, just that I start getting calories and when I am off my TPN we will start to eat better foods... hopefully. Please keep praying that I will want more food and better for you. I also need to be able to take all my oral medicine in my mouth vs. my tube so I can get my NG tube out. Now, we are just waiting for those 100 days to be up and we can go home!!
Please continue to pray for my friend Torie that her donor cells grow, grow,grow. She really needs prayer, please check her website for more info.
We love you all and miss you. Thank you for your encouragement and we will talk to ya'll later!
Love,
Josiah

+64 Please pray for Torie

Hello,
As you can see I am getting very furry. I mentioned before that I am on a medicine called CSA that grows hair everywhere (except your head, so it seems). I am finally getting a little shadow of hair on my head as well and it is all coming in black. Wow! I had my 60 day labs done and everything is perfect.... 100% engrafted in every category. Can't get better than that, Praise the Lord!!!
We do need fervent prayer for my friend Torie. I think it was the 40day labs that came back that she was 94% engrafted. This last test came back that she was 97% herself and 3% engrafted...:( It is a little confusing (even for the Dr. I think). They are cutting back

her CSA (anti-rejection medicine) to see if her numbers come up by day 100. If they don't it is back to ground zero, either she goes home with the BMT not working or starts BMT over with a compromised immune system. We can hardly think on these things and ask much prayer for the Lord to work in her little body and for her donor cells to grow. Torie and her Grandma's have become like family up here and we love them dearly. Please pray for the Lord to give grace to this family! We thank you all for following our progress and encouraging us with your prayers and notes. Please know it is not in vain!! We so covet your support and thank the Lord that He has given encouragement though ya'll. We miss ya'll and everyone can't wait to be able to go home.

Lots of love and hugs,
Josiah and family
P.s.for more updated report see Torie's blog

+61 just had day 60 labs

Hello,

After a fun weekend we had clinic on Monday. I had my 60 day labs (the results won't come back for awhile) and and they took off my lipids (the fat in the TPN) to see if I would continue to eat better. My eating has improved and I even went to the fridge and asked to eat today. I am doing well even though I am getting a little tired of all the therapy, I have some every day of the week.

Also, my sisters and Pa-paw had haircuts yesterday. Here at the R.McD house they have volunteers from salons around town to come in and do haircuts and styles for free. My sisters had so much fun getting all fixed up and Pa-Paw got a really short cut for the summer. I would of gone but I still don't have hair on my head yet just everywhere else. I am turning into a furry boy.. the side effects of the CSA (med. I will be on till day 100 and then taper off for 8 weeks), it grows hair everywhere but your head. I had a bath tonight and it made all my hair all over my body stick straight up, mommy just laughed. We didn't get a picture because I was so cold so I wouldn't let them take the time to take one.... maybe next time. :)

We got to see something I wouldn't of guessed you would see in the city. A turkey in the parking lot... and it just stayed there. Daddy said we should shoot it for Easter Dinner but Hannah said that she didn't think they would allow you to shoot it here. It was a reminder of home though and it was so funny.

Thank you all for hanging in there with me and for all your prayers and encouragement.... it helps keep us going. We miss you all and long for home.

Hugs,

Josiah

+59 Happy Easter

Hello and Happy Easter to All,

I love to see this beautiful day that I woke up to, the sun is shining and it is going to be a wonderful day.

I am feeling well, eating more and having more energy. I really enjoyed my Uncles and Aunt Kendra coming for a visit. They even got to stay and see the famous egg hunt. The house we are staying at has such wonderful people helping, they are so kind and make being here as much like home as they can. Every year the staff here fills thousands (yes, thousands) of eggs and hides them all over the main floor of the Ronald McDonald house. All the children (young and old... like really old :) come and hunt for them. I really enjoyed finding my basket full but I tired out really fast. My sisters and Jay on the other hand spent quit a long time hunting and finding all the fun eggs.

Most all the kids from the house were there, so not only were we finding eggs we were having fun with friends. Even Torie come out in her bunny hat and found a basket full. It was so much fun.
After the hunt my uncles and Aunt Kendra had to head for home... we sure miss them already but know that we will see them again soon ( when we get to go home).

Even though we enjoyed hunting for eggs we know that that is not the real story of Easter. Jesus died and rose again for each one of us that we may have eternal life. My family and I have been through a long process and Jesus is the only one who has been able to give us any peace and hope through it all. Without Him (Jesus) we would have no hope. So, We hope that all of you have a blessed Resurrection day and rejoice that Jesus is alive. Jesus has blessed us so very much and we hope that each of you will know Him personally and He will bless you too.


Lots of love sent to all,
Josiah

P.s. don't let those little baskets we are carrying in the picture fool you, we got two big brown grocery bags full... $9.75 in quarters and about 10#'s of candy. So if any of you get a sweet craving just come on over. :)

+56 doing better

Hello,

I am enjoying this beautiful 70 degree weather up here in MN. Daddy, mommy and I walked to therapy today. I got to play with blocks and balls and color all over a big wall, I love playing. The therapist said that I am doing so much better. She thinks it because I have been practicing on my tractor and getting stronger. I still don't last to long but it's getting better every day. I have speech therapy on Friday and then I get the weekend off. My Uncle Nathanael and Aunt Kendra and Uncle Josh are coming for a visit this weekend, it was Christmas when we last saw them and we are all so very excited. Please keep them in your prayers for travel safety.

We miss everyone so much and can't wait till we can go home. While being here we have met some very special people that we will always carry in our prayers.

God bless,

Josiah