+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