Much to be thankful for (surgery update)

Well, since the last time I wrote, my family has been down with sickness....every last one, except me. That was until last week. It has been amazing that I haven't been sick with even a stuffy nose while we have had just about everything run through our house. Last Monday I did wake up with a stuffy nose and now I have a cough. My cold is not to bad but for the surgery to have the best possible outcome I have to be very healthy. So the Doctors have postponed, yet again, the surgery till the earliest Feb.28th. possibly even later. I don't know why mommy and daddy seem a little disappointed because I have had so much fun climbing, kicking and playing the last couple months and look forward to exploring and NOT being in a cast for the next several months. We all know that the Lord is in control and we know that His will is best and that is what we rest in.

Being as we have been so sick lately we have missed lots of outings, family gatherings, Me-ma and Pa nights and even church for months. So I was so excited to be able to get out today and have a trip, even if it was to the Doctor. I saw trains and said "Thank you" for all my stickers, I waved to the nurses and blew kisses to all the babies I saw (I love babies :). Although I did have to have some x rays and I didn't like that at all, but still had a wave and "thank you" when I left. I love making people smile and laugh and I love to smile and laugh with them. Each day is a blessing and I want to make each one the best it can be. My family and I have so very much to be thankful for this year. We pray that no matter what has happened in the last year that you keep your eyes on the blessings in your life, because no matter what we always have something to be thankful for!

May God bless you and thank you for your prayers and checking in with me today!

Love,

Josiah

Sometimes life turns upside down

Greetings from Josiah's mom (Josiah is a little tired from all that unfolded yesterday, so I will share the events of our day :),

As the sun comes up on yet another day, I am reminded of all the wonderful blessings the Lord has given. Even when we don't know what the day will bring, He gives a special peace to those who know the Lord is in control of every step we take. Yet again our life has been turned upside down, but sometimes the view is better from down here.

We set off yesterday to the hospital to have all of Josiah's pre-0p appointments. Hours after we first set foot in the door the Surgeon says we will probably have to postpone his surgery. Knowing this was a possibility it didn't come as a shock but a bit of a disappointment. We have waited months for this surgery and we really just wanted it to be over. Even though Josiah has been on Antibiotic for a couple days now there is still a higher risk of infection due to him being sick so close to the surgery. One of the biggest concerns after surgery is Pneumonia setting in and of course with just getting over a respiratory infection there is even greater risk of this. Also, they put screws and plates inside of him to hold the bones in place and if any germ gets into the blood stream during surgery it will go straight to this site and cause more infection. So knowing that the surgery already comes with risk, the Surgeon and Anesthesia doctors have chosen to post pone the surgery for at least 6 weeks after his antibiotic is finished (making the new date November 29th). This is the case only if he completely gets over this cold and doesn't get anything else in the mean time.

So some may feel the prayer crises has been postponed, please don't let that be the case. I know that everyone has trials everyday, some more than others BUT please keep Josiah on your list! Prayer changes things! We are faced with some more information that needs our prayers. We do need Josiah to be healthy for the next 6 weeks ( and beyond) but also for his blood and body to get strong in the mean time. Josiah will be having a surgery to fix his hips and turn his ankles. They will be cutting the bones, creating new cups for the hip bones to go into, cutting 1 if not 2 leg bones to turn his feet (total radius of 90Degrees) on both hips and ankles. The plan right now is to go as far as Josiah's body can handle... to do both sides which will be a 13-15 hour surgery, minimum of 5 days in ICU and 6 weeks in a half body cast........

the NEW news... if they can't complete the surgery and Josiah has any risk they will only complete one side, One hip and one ankle. Doesn't sound to bad. Except that if this is done we have 2 options. To do the surgery on one side and then he will be in ICU for a week wake up and have the second one done. He will be in the ICU for at least another week hoping that his body doesn't go into shock from the first one and the risk of infection grows. Or have the first one done and be in a half body cast for 6 weeks just to start all over on the other side. That would mean almost 3 months of a half body cast.

We know the Lord is in control and His will is going to be done. Yet you see why we continue to ask for your prayers. Prayers for wisdom and strength. We know the Lord hears our prayers and He has blessed Josiah so much (and all the rest of us), that I know the blessings will continue even if our world turns upside down. We have been so blessed by all the support and prayers from all our family and friends, the Lord has used YOU and we couldn't of done it without all the support.

Thank you,

Josiah's Mom, Dad, sisters, brother and of course Josiah :)

Another journey

Hello to all,

Well, the last time we talked I told you I was suppose to have my tubes replaced and dental work done. That didn't happen, ( A man's heart plans his way, But the Lord directs his steps (Prov.16:9). I have been sick for the last couple of weeks with bad cold/allergies so they wouldn't do it anyway but I think they moved it till December, we will see.

Although I do have my BIG surgery coming up. The next time I talk to you I will be able to share a picture of my special cast. Maybe everyone can come sign it! My hip surgery is next Tuesday (Sept.20) at 6:00am. I will be put to sleep for over 13 hours. Actually longer than that, for I will be under lots of medicine for several days till my body adjusts to the shock of all of it. Then they wake me up... please pray for that. I don't understand it all but mommy and daddy know I still won't understand when I wake up and can't move, walk and am in a lot of pain. I know the Lord is in control and we ask you all for your prayers for it all to go smoothly, quickly and with not much pain. Also for my family to be in peace knowing that the Lord has everything under control. This is just another journey that goes into my book and has a special ending even when we haven't read it yet.

Thank you all for checking in and I will be keeping everyone posted, but please keep praying!

Love to all,

Josiah (and family)

End of the Dr. Vacation

Hey ya'll,

Our Vacation from Doctors is almost over. I know it's been a long time since I talked to ya'll but I have been doing so well and enjoying my summer that I almost forgot that life wasn't all about fun and playing. As you can see in the picture that the outside of our house is almost done. It has a long way to go but it is fun to see it look more like a house. We also have a big garden this year. So we have been busy keeping the animals and bugs out, weeding, canning beans (together with family we have canned over 350 jars... whew!),onions, okra, corn, eating tomatoes, green peppers and waiting for our squash, zucchini and pumpkins to come in. Wehave had family come visit, Grandpa and grandma are driving to Alaska (yes, driving :) and next week we will have 3 of our cousins come live with us for several days.

We are about to get back to business though. I will be having minor surgery soon. They have to schedule everyone together so I don't have a date yet but it has to be in the next couple of weeks. I will have a bunch of dental stuff done, my ear tubes replaced (again) and an ABR (hour hearing test) done. The Doctors will give me medicine to help me sleep and I will have a tube in my throat. They say I won't feel it because I will be asleep, but I still don't like it. I will be asleep for almost 3 hours. Please pray that it all goes well. This all has to be done in a couple weeks because I will have my double hip surgery September 20th. They will fix both my hips and brake and move both ankles. That day they say I will be asleep for over 13 hours.. YIKES! Mommy says I will be in the

ICU for almost 5 days and

in a body cast for 6 weeks. I love playing, climbing, running and kicking a ball so much I can't understand what she is talking about but I know that the Lord will give grace one day at a time. I will keep you posted when we know more but till then I am going to make the

most out of each day the Lord gives. I hope that you do too!

Blessings to all,

Josiah and family

Birthday Boys!

Hello,

James and I are 4!!! HOorAY! We have had so much fun playing and partying over the last week that I wish my birthday was more than once a year. I have gotten to play at the park and and have parties with family. James and I got a play grill, a pool, toys, books, a big Nerf gun and a whole big bucket of treats...yummm ( just to name a few). Last week we also got to go camping in the back yard and roast hot dogs and marshmallows. We haven't been able to get in the pool yet because it never seems to stop raining around here, but hopefully soon. I love water!!

Thank you all for your special birthday wishes on Sunday and the many more we have received since. We even got to have a special call from our Triplet girl Torie and her grandma great! Torie is home now in Colorado and doing so well, that is a great present all on it's own.

We have been having fun and the summer has just begun. Thank you all for sharing our day with us and we hope you have a very blessed day!!

Love,
Josiah

P.s. Thank you all for your prayers for safety in the storms. We have been very blessed and have had minimal damage. We continue to join in prayer for all those we have lost a lot more!

Hello out there! May 2011

Hello,

I haven't said hello for awhile so I thought I would catch everyone up on my busy weeks. Hope everyone is staying cool in this hot weather. Mommy says that I might get a pool for my birthday so I am hoping it stays nice and warm. Maybe it will be a green one because that is James' favorite color.

I am so excited to be without my mask, I have gone so many places and done so many things. My family and I actually went to a sit down restaurant and I got to eat! It was so yummy and my sisters and James enjoyed it to. Last week my sisters had Field day and we got to go watch them. OF course James and I would of rather been out playing then watching but it was still fun. We even got to have a picnic at the park with my Grandma Dee and Uncle Ben.

Also, I got to go to a Baseball game. My favorite part was seeing the Big Cat and the Fireworks afterwards. It was so much fun.

I did have some Doctor appointments last week... a whole day of them, whew. My Dentist appointment got rescheduled. My appointment was for 8am and I couldn't eat, so after not being able to eat anything for breakfast and they still hadn't seen me by 10:00 I was so hungry! After we got some food I had to go get fitted for hearing aids. They squirted goo in my ear that looks like soft play dough and then it hardens and they pull it out, I didn't like that at all. I did get to pick my colors though, I got a light brown and green sparkles (for James :). Then off to the Ortho Dr. who gave my mom and dad a second opinion on having hip surgery. I don't like Doctors but this man was very nice and told me what was going to happen. I will have to have both hips broke and turned along with my ankles ( because my feet turn out so bad). I will have to be in a cast for up to 6 weeks and in the hospital for 5 days, yuck! I don't like the sound of that. Please pray for Daddy and mommy to make the best decision for my future. The Lord has blessed so far and I am better today than I was a year ago (I have been home from transplant for 1 year...woohoo!) so I know that Lord has my best in mind. If I have this done it will be here in Tennessee and maybe in the late fall so I can enjoy my summer this year. I so love water so I am really hoping for that pool (.. hint , hint :).

I hope everyone has a wonderful summer and I will check back with you really soon!

Love,
Josiah

P.s. I can't forget to give an update on my triplet Torie. She has been home for a while and doing so very well. She is even going to be a big sister soon! Please keep praying for her! www.toriebrady.blogspot.com

Happy Birthday Hannah

Good day to all,

Hope you are having a wonderful spring day. Just wanted to share some pictures of my sister Hannah's 8th Birthday. I love her so much and I loved her cake! Chocolate covered strawberry cake.... ummm ( was the actual word I used :). She is 8 years old and I look forward to having more parties with her. I look forward to my birthday in just a couple months. James and I will be four in May. I can't believe it and I know everyone praises the Lord for bringing us this far. My bestest triplet friend Torie had her birthday last week, she is already 4 and she had a super birthday at HOME with her mommy ( and other family). We praise the Lord for His work in her life too.

I have Dr. appointments soon... after this nice Dr. break I don't look forward to getting back to it but the Lord knows. Please pray for wisdom for the many decisions mommy and daddy have to make. Thank you for stopping and seeing me today. Hope you have a wonderful day!

Love,

Josiah

Spring in the air

Hello Everyone,

Since we came home from Minnesota the bugs have gotten us. All kinds of nasty germs have come and gone, so we have been a little under the weather. This week has been great!! Finally everyone is feeling good and the weather outside is beautiful. My sisters are still finishing up school but we still had lots of fun outside. My Grandma Dee's dog had puppies and I love to hold them. I also got to go to the park with James and my sisters and I love going down the slides. Actually I like going everywhere and climbing on everything but some things mommy wont let me go on, she just doesn't understand how much fun it can be. My daddy has been working on our house and we are going to be starting a garden soon. I also love to play with dirt. Animals, slides and dirt, three of my favorite things.

Just wanted to say hi and hope everyone is enjoying the Spring weather.

God bless,

Josiah

+379 New decisions

Hello,

Boy I can't believe it has already been a week since we last talked. Last Friday I went and saw my hip doctor who said I needed a double hip surgery sooner then later. I think it scares me a little about being in a full body cast for weeks. Mommy and daddy still are trying to make a decision if this is best for me, so please keep praying.

Friday night I got to play with Torie (who is on her way home now.. woo hoo!) and see some of my other friends. There were 6 children in the house with Hurlers. Actually 2 of them are in the hospital during transplant but we got to visit with Ethan (who is delayed for his 2nd transplant), Alison ( who is here for tubes in her ears and just had her 400th ERT.. that is her in the picture). And of course Torie and I were there. We had lots of fun!

We left for home on Saturday and got to IL. but then daddy got really sick ( with bronchitis), but the Lord heard all the prayers and he felt like we could continue our trip in the Morning. We finally got home on Sunday night and I was so excited to see my sisters, brother, grandma's and grandpa's. We have stayed very busy with settling back home and trying to help with my great grandma with is going to be with Lord very soon. Not only all that but then the flu started traveling around our house. Hopefully it will be gone soon. James and I haven't gotten it so we try to take care of everyone and so does my big sister Hannah who has been a great help. Our days are full but we know the Lord is in control. Thank you for visiting and check back soon! We love you all!

Josiah

+371 Peacefull Sleep

Hello,

Thank you all for your prayers, I know the Lord is hearing them. After a rough afternoon yesterday I seemed to get a little energy back right before bedtime. Mommy and daddy still made me lay down and go to sleep early but after a few minutes I was glad. I slept peacefully through the night with hardly any snoring or noise. When I woke up this morning I was in a good mood and ready to go. I am still sore and don't bend to well but I am happy to be able to breathe better and have energy. The Lord has been so good, we are all very thankful.

I had an appointment this morning for my back. They said I don't need back surgery (only a 50degree bend and they don't fix it till it gets to 75), and I may never need it if my back keeps growing like it has. Praise the Lord ( very common for children with Hurlers to need many bone surgeries, especially back). The doctors did see in my x-ray that I will need hip surgery and very soon. I have no hip sockets and that is why I walked late and a little funny now. We will know more tomorrow when we see a different Dr.... so many Doctors but I am getting lots of stickers :)

Thank you for checking on me and hopefully after seeing a few more Doctors I will be able to head home on Saturday.

Love to all,
Josiah

update on surgery

After leaving for the hospital at 6am he went into surgery at 9am and out around 3pm. He is doing well but very exhausted and congested. Please continue to pray for the swelling!! We will update more later but wanted to let you know how he is doing. Thank you for your prayers!!

Josiah's mommy and daddy ;)

+369 1 year check up in MN

Hello everyone,

Sorry it has been so long again, time just seems to fly by when you stay busy. Last Friday was my 1 year un-birthday (and Torie's too)! Can't believe it has been a whole year since my BMT.

Mommy, Daddy and I left early in the morning to leave for our big trip. We made it to IL. Friday night and got to visit with my Uncle Josh and Aunt Lindsey. We left out early in the morning again and made it to Minneapolis on Saturday evening. We got to visit with Torie and her grandma's when we got here and had so much fun! We also had a treat to see Liam and his mommy before they left. They are friends that we met when we were here before. Actually we have seen a few familiar faces around here... it always seems like family here in the house that Love built and we are blessed to be able to stay here.

On Sunday we got to visit our church that feels like home and really enjoyed it. Monday we hit the road running. Our first appointment was 8:30am and our last was 4:30pm, with lots in between. We ate pancakes and sausage for dinner and got to sit with Torie (she is doing so well they should get to go home on Friday !!!). Tuesday started even earlier then before and we had to be on the shuttle by 7:40am. We have a very slow day today which is good because we have to be at the hospital at 6:00am on Wednesday. I go under Anesthesia (around 8) for several hours to have many tests done and to have my belly button hernia fixed. I am not looking forward to going to sleep but I really don't like waking up after they have had to stick a tube down my throat. Please pray that it will all go well and everything is fine. Also my blood pressure is a little high. They are going to take it again while I am asleep and if it is still high I will have to go on Medicine. Please pray that it is lower so I don't have to stay on any medicine. The Lord has blessed me so far , I know He is not going to leave me. We just need to trust that He is in control , no matter what! Mommy will give an update after surgery , so please pray and check back tomorrow!

Love to all,

Josiah

+341 Happy in the New Year!

Hello to all,

Hope you had a wonderful Christmas and start of a New Year. So sorry we haven't posted for so long but it has been quit busy around here. I have been up to my new antics lately of taking a bath (by myself with my clothes on), cracking eggs in the fridge, coloring on absolutely everything and seeing if I can talk James into helping me. I love trying new things to get attention and laugh when it does. My sisters have been busy with school and James is learning his letters. I am just learning how to find the crayons mommy hides so I can keep coloring. We did have fun Christmas week making crafts and I thought it was so funny that there was a tree growing in our living room! Mommy got really sick on Christmas for several days but other than that we have been pretty healthy.

We are getting a lot of snow lately... first white Christmas in TN for years. ... and it keeps coming. We all love snow and are thankful for our warm house. We are building a new house that should be cozy and warm someday but right now it is covered in snow (inside and out). :) The snow is always so pretty. I guess the Lord is preparing us for our trip to Minnesota in a few weeks for my year check up. I go up there on Feb. 4-13 for a week of testing. My Doctors aren't worried about the outcome for the Lord has been so good and and I doing so well. Please pray for our trip though and we will post how all my test come out. Till then may you all have a blessed and safe New Year!

Lots of love sent from TN,

Josiah