Finally home

Just wanted to update and thank everyone for their prayers!

We were discharged on Sat night and were able to come HOME!! Josiah was so excited that he was waving and saying thank you all the way out of the hospital :)

He does still have some swelling so it sounds like he is snoring while he is awake but doing better. Slowly taking a few bites of food but still not wanting to eating much. The cookie in the picture was just for show, he wanted to show you what His Aunt Karen, Aunt Kathy and his Pa, brought him. He loved having them come visit. They also had some visitors in the hospital of his Aunt Rooney and Uncle Darrell, he showed more excitement when they were here and it was so sweet.

He was up a lot last night and we are still dealing with Pain management but he loves being home and actually wants to try to walk around and even tried to stand by himself (doesn't work to well). The more we are home the better he will be, it is just going to take some time.

So thankful for all the encouragement and prayers for our family and especially for our sweet boy. He is a trooper!  The Lord was in so many of the details of this I could make a really long post but I won't :)  I do want to share one story with ya'll..

Had to share... We needed a certain wheel chair to be able to bring Josiah home. All the equipment places are closed on the weekend and said they could bring it to our home on Monday. We really needed it most sooner than later. The Nurse said she would set it up for Monday but ended up getting it yesterday for our trip home. The nurse came in and was so shocked. She said that she had to hide it from the other patients because they would ask where their's was. She just kept saying " I have no idea how you got this, I am completely amazed, things like this don't just happen.. ya'll must be blessed"! ~Yes, indeed we are very blessed!!

post op update

Update on Josiah: It has been a long 48 hours. Josiah is in a regular room and only on blow by oxygen a little when he sleeps. Still struggling with a little pain and he hasn't been able to keep anything down yet. I think if he could eat a little and keep it down they would let us go home. Please pray that his stomach settles and he can keep something down. 

We have seen the Lords hand in all this and I know He will carry us home too! Thank you all for your prayers!

Recovery

4-23-2015
9 PM

Surgery went well. We are back in recovery with Josiah now. Please continue to pray as he is swollen in his airway area and can't swallow. They have to suction him every so often and have him on forced oxygen. He is doing good, but it will be a long night. Thank all of you for your prayers!!!

4-24-15
6 AM


The night has gone well. They have given Josiah a breathing treatment and he has rested good and is alert this morning. We hope to get the air machine off soon. He is already wanting to get a drink and get down and walk, which is a good sign. Continue to keep him in your prayers as he recovers today.

Surgery .. please pray + Update

*** UPDATE>> Praise the Lord! They woke him up and he moved just fine!!!! Surgery is a go (starting now for at least the next 5 hours), please continue your prayers.. thank you!!!******


Please continue to pray for Josiah and also for wisdom for the doctors. We were just updated by the doctor and they have not started the surgery yet. As they were preping Josiah, they were unable to get a read on his brain signal that controls his arms and legs. They have been able to position him in a way to get the signal, however they are going to wake him up to make sure he can still move. At this point they are not sure if the surgery will be done today or not. We need much prayer, wisdom and peace!

Surgey Thursday

James and Josiah at the Zoo

"People who don't have a special needs brother or sister, doesn't know what they are missing."
         This is what my oldest daughter mentioned last night when Josiah was going around giving goodnight kisses to everyone.  It does a mothers heart good to know that his siblings love him so much. Truly, if you know him he is very lovable. He is a little person who isn't perfect but he is probably the most caring, joyful and loving person in our family.  I guess the Lord has given us many opportunities to realize how blessed we are. Every time we are reminded of his earthly fate we thank the Lord for putting him in our family and so thankful for him.

So, here we are on the eve of another surgery, thanking the Lord for every minute we have with him and it puts it in perspective how short our lives are... our lives are as a vapor (as in James 4:14). The Lord keeps putting this before me to help me realize that our time is precious, not just with Josiah but with each of my children and everyone around us.  I know that the Lord is in control of our days and am so thankful for the peace that passes all understanding to get us through the next few days.

In a nutshell, Josiah will be having surgery on Thursday morning at Vanderbilt in Nashville. This is not going to include the back surgery because the Doctors decided both the surgeries are so crucial that putting them together would be to much. So for this one they are going to be fusing the top two vertebrae at the top of his spine with screws. This will help with the underdeveloped or "Broken" bone in his neck. They will also be taking bone from his hip and using that to graph them together. Then they will take what Jim calls a Dremel tool :) to clean around his spinal cord to make extra room since the swelling is so severe. This is all going to be done under sedation obviously and will take several hours. We should only be in the hospital for about 2 days (but it falls on a weekend so it probably won't be till Monday). He will be discharged with a neck brace (if all goes well) and will have to wear it for at least 6 weeks.

We are so thankful that you check in on our little guy and for your prayers. Over the years, the prayers of family, friends and even strangers has been the most comforting to our family. I will try to keep an update posted when I get a chance.

James 4:14 

whereas you do not know what will happen tomorrow. For what is your life? It is even a vapor that appears for a little time and then vanishes away.

Surgery needed, please be in prayer.

I know it's been over a year since I posted... but all I have time for right now is a *quick update*.

We had another appointment at Vanderbilt yesterday. Josiah has broken a bone in the vertebra in his neck that we never realized. They found this when they were looking at how extensive the surgery is going to be to fuse bones in his neck due to inflammation around the spinal cord.This bone moves every time Josiah moves his head down and could puncture his spinal cord. So he will have to have surgery for both the broken bone and the fusing of the neck soon. They are trying to coordinate these surgery's with the surgery for his back.

His spine has gotten worse in the last year and will take an extensive surgery to fix just that. The Doctors are getting together in the next week to see our next step and figure out how much they think Josiah's little body can handle at one time.  
Josiah's legs have also started hurting him lately and is making it harder for him to get around. That surgery will be after the above mentioned. His spirit is still High and he is a trooper, but please pray for wisdom, peace and Healing. Thank you!

Doing Great!

Hello Everyone!  Sorry, again for how long it has been but no news is good news in my case. Just wanted to update everyone who still follows (thank you!!!).

Health wise I am doing well. Although, last night my ear did start to bleed but the ENT just called in some drops so it was no big deal. As for upcoming surgeries, I don't have anything scheduled for right now and it doesn't look like any in the near future either... doing pretty good. Praise the Lord!

I am working on school which I don't like very much.  My mom is homeschooling me and my siblings and I like the fun and games, crafts and projects but not working on my writing or talking. I am site reading and signing lots of words and that helps me to communicate but some people still don't understand me so I don't go to a regular school. I do do some therapy's but if you ask me I could skip those too.

This last weekend My family and I got to take a trip to my Uncle Josh, Aunt Lindsey and cousin Dylan's house in IL. It was so much fun!  We got to go through a corn maze, play with water, see animals, pick pumpkins, go on walks and many more fun activities. It was so much fun. I really liked playing with my cousin Dylan who just turned 1 !

Hope your fall is going great. Just wanted to say HI!

Blessings to all,
Josiah and family

Happy 6th Birthday

Hello, the mommy here (that is what our twin girl Torie calls me).  Thought I would give Si the day off for his birthday (actually I just wanted to share some thoughts with you from the past 6 years).

Wow, I can't believe how fast time can go.  I guess the older you get the faster it goes and everyone tell you that until one day it hits you.  You realize you are old and everyone was right.  I can't believe my babies are already 6.  Yes, 6 years ago  I had no idea what we were in for.  The joys and trials, the laughter and tears, the fear and trembling, or how the Lord would grow our faith when he brought these 2 little boys into our lives.

Most of you know our history but I will briefly give a recap. There has been so much that has happened I will just give some of the highlights (and maybe a couple of low times too). When the boys were born I was so excited, we had 3 girls already and now the Lord blessed with 2 boys.

James was the one we thought might have some problems. He was born with cysts on his kidneys. He had to be in the hospital a lot for testing and ultra sounds but in the end the Lord was always in control. The Lord helped his body to absorb the cysts and in the process it absorbed 1/2 a kidney too. So James only has 1 1/2 kidneys.  Since then he has been very healthy.  Little did we know that God had even a bigger purpose for him then we knew.

Josiah had been in and out of the hospital most of the  first couple years of his life. Finally, after one of his hospitalizations (when he had just turned 2) a Dr. finally asked us..." have you seen a specialist about what is wrong with him?"  What is wrong with him?  I know most parents want to think their children are healthy and happy.  As a momma, I had a thought that something was wrong, I just didn't know what. Josiah didn't even sit up till he was almost 10 months old. He had a huge bump on his back and we could tell he couldn't hear just right. But we didn't know what would be "wrong" with him. Finally after seeing special Dr.'s we found out that Josiah had Hurlers syndrome.   It is one of THOSE diseases that people don't like to talk about. No it is not contagious and No we don't mind people asking questions.   It seemed at the time that the world was caving around us. I am so thankful that we had good friends, an awesome church, loving family and most importantly the Lord Jesus, who never left our side.

Over the next couple months Josiah had to have lots of test.  He even started Enzyme Replacement Therapy (ERT) that was a several hour infusion every week at Vanderbilt.  Finally we made the decision after much prayer, that we would go through a transplant.  Sometimes it is hard to drudge up the details because  I think I have tried to suppress things but I know that even when we felt like we were making the wrong decisions or needed much wisdom that it wasn't actually us , the Lord was in complete control.

Finally, we found out that James, Josiah's twin brother was an identical match for transplant. They look at 10 markers of compatibility when seeing if someone is a match ( I think I remember that number right) and 6 is good but James had all 10!! All the Dr's were shocked but we knew we were just blessed. God had provided us with a blessing of Josiah and James as life saving blessing to us all.

We went through transplant in Minneapolis, Minnesota on Feb.4,  2010 (Josiah was almost 3).  As most of you know we moved our family of 7 plus my dad up there for 6 months. The Lord worked out absolutely everything, down to the last detail. Really I mean every detail. I could tell you story after story that would give you goose bumps.  We also made some life long friendships while we were up there and even met some angels in the process. :)

 One of which most of you know is Torie. She is a little girl with Hurlers that went through transplant the same time as Josiah. She is only 2 months older than he is and we call her our twin triplet since they went through everything on the same day. Their family was instrumental in helping us get through this. I always knew that I could go find momma Cheryl who knew what I was going through. Torie and her family was and is a continual blessing in our lives and we love them like family!

Since then we have had lots to overcome and I am sure he will have lots more, but overall Josiah is doing well. He just had his 3 year post transplant birthday Feb.4th and his work up was wonderful. Few things here and there that we still have to go through but he is still 100% engrafted with normal enzyme levels ( that is what you hope for with a transplant), we couldn't of asked for more of a blessing.

James is doing great too. He loves being Josiah's hero and takes good care of him. He has started to realize there is more of a difference between the two of them but he embraces it and loves Josiah even more.

My 3 older girls are doing well, trying to get through school and other growing up struggles and blessings.  The Lord knew I needed 3 older helpers and I don't know what I would do without them. I love them so much.

Jim and I would of never wished this on our family but we are so thankful that God is in control. He sees the bigger picture and we know that our lives are better because of it. We are also so thankful for YOU. All of you who keep up with this blog and encourage us with your thoughts and prayers. You will never know the rich blessing that has been to our family. God has used you in an enormous way and we are so very thankful.

I can't believe how I rambled on, If you are still reading I applaud you and thank you.   I guess realizing the boys 6th birthday was upon us made me realize how big of a blessing and trial the last 6 years have been.  I know we have just started to climb the hill but look forward to what God has in store for us the the years to come. They might not be easy, but knowing that the Lord is in control, I know they will be for the best.

Blessings on your day, thanks for sharing it with us. If you have any questions, please feel free to ask ... we really don't mind it at all.

Love,
The Carman family

Check out the link below to see a tribute video of the boys 6 years... I hope it works (P.s. I believe One True Media's site is having difficulties. If you can't view it please check back later.. thanks!)   :)
James and Josiah's 6th Birthday

Sedation update

Thank you for your prayers and encouraging notes. My day went great yesterday and I was home by supper (at the hotel). Today my appointments went well but went past nap time so I am tired. Overall my week has been great. Only a few doctors left to see. Today I saw my heart dr who said I get an A- in my report, but an A+ for cuteness! The A- was because the leaky valve they found two years ago has gotten slightly worse, but the function of my heart is perfect.  She said that they have never had to have a valve replacement in any Hurler patient yet and I am not to be the first. Please pray that the leak will get better over time not worse. She also said that my hearts function is so great that it outways any bad. Praise the Lord. I know God has taken care of me so far and continue to thank Him alone for the grace in my life.

Thank you for checking in on me, we travel home this weekend. I am looking forward to seeing my sisters and James again. I keep looking for them but I know I will find them sometime! :)

Love to all,
Josiah and family

Leaving hospital after Sedation tests (can't get that glue off my face )

Sleepy boy during appointments today

3 year checkup in Minnesota

We are here!   It was a long trip but we are finally in Minnesota. We left home on Saturday morning and got to visit my new cousin (in IL.) for dinner that night. Then we left Sunday morning and got to Minnesota Sunday night.  We are not going to be able to stay at the Ronald McDonald house this time because they have a long waiting list but we got to visit and see Jerry and play at the play place.  Monday Morning we got to visit our favorite doctor, Dr. Orchard.  He is so good and it was nice to hear good news from him. Everything is going well and all we have to do is see all my other doctors now.  Tonight, we got to see TORIE!!  We had so much fun, I wish we had more time to play because we miss her and her family so much.  Torie, Grandma, Poppa Tom, Mommy, Daddy and I all went and had dinner and then gave Torie her birthday present. She just had her 6th birthday last week so she was the birthday girl tonight.  We love that they are up here and that our paths crossed that first day. :)

Going to sleep early tonight because we have an early day in the morning.  I have to be at the hospital for many test under sedation at 7:30 in the morning. Please pray for the intubation. I don't usually have problems with sedation it is when they have to stick the tube down my throat to help me breathe. My throat is not normal so it is hard for many doctors to get that tube down there and can make it swell, which causes other problems. I know God is in control and everything will go exactly as planned. Your prayers are very encouraging and we thank you for stopping by and checking on my.  Mom and I will keep you posted!

Minnesota trip

It's that time of year again. Actually, I didn't have to go last year so it has been two years since I have been up there. Where is there (for those of you who I have met in the last couple of years)?  There, is Minnesota Children's Hospital, were I had my transplant over 3 years ago.  I just have to go back for tests to keep up with my progress and to show all the Doctors up there how well I am doing.  The Lord has truly blessed me and my family and I are really thankful.

When I am up there I will get to see my friend/twin triplet Torie. It has been so long and I can't wait to see her and her grandma.  They were like family to us while we were away from home. Torie, also has Hurler syndrome and we are only 2 months apart in age and have the same Un-birthday (transplant date).   Several of our friends will be up there when we are having check ups done and I will get to meet a few new ones too.  Can't wait.

So please say a prayer for our trip. We leave next Friday and will come back in 9 days.  That is a long time to be away from my brother and sisters but they get to stay with Grandma Linda and Grandpa, so I know they will have fun. Maybe pray for them too :)

Hope you all are having a wonderful year and thank you for keeping up with my progress. Your support has been such a blessing to my family and I ... Thank You!!

 Good Morning,
Hope everyone is having a blessed day!  Just had to share some good news really quick.  I went to have a checkup with one of my Transplant Doctors last Friday.  She said that I was doing so well from a transplant perspective that I didn't have to come back.  WHAT!!??  We are all thrilled. I will have some tests done once a year or two (probably in Minnesota), but if the Lord continues to bless I will not have to go back to Vanderbilt for transplant issues. Whew!  What a blessing. Just wanted to share with everyone that the Lord has blessed me and my family so very much and we are truly thankful!
We hope that everyone has a blessed Christmas and New Years.  Probably will talk to ya next year :)

Blessings,
Josiah and family

So Much to be Thankful for

Hello to all,
Hope you had a wonderful Thanksgiving this past week. I think we ate all weekend long.

We have had a very busy several days. As my family has been packing and moving, I have been exploring all the new rooms and cabnets that I can.  I have been loving doing school and playing in the new house.  Also, I am so thankful that my new cousin Dylan came to visit for Thanksgiving.  I love babies so much and just begged to hold him whenever I could. I did have to share but was never far away to make sure everyone was taking good care of him.

Shhh.. baby sleeping

Uncle Ben soaking up his 20th Birthday wishes.

We have so many things to be thankful for this year.  We got to move into our new house, We have a new baby cousin, my Uncle Ben (who has Down Syndrome) turned 20 this year and my twin triplet Torie is doing great!  I could go on and on. We are so Thankful to the Lord for keeping us for another year and we look forward to where the Lord takes us in this coming year.

Getting into my favorite cabinet.. the snack pantry! 

I haven't had to many Doctors appointments but have several coming up. I will have my eyes checked soon and my Transplant Dr. update. I will be going back to Minnesota for some annual testing in Feb.... it has almost been 3 years.. woo HOO!  I did go see my hip and ankle Dr. that said my healing is going great and my hips look so good that he wants to post pone my other hip surgery for several years!  Although, when he did look at the x-rays he found that there is a bone that is dislocated in my foot that has been making my feet still turn sideways when I walk.  I will have to have that surgery coming up and will have an update after my foot CT in the middle of December.  Overall I am doing great and so is my family.  We so love that you all check in on me still and we love your prayers.  When I think of all the things that I am thankful for, everyone that has supported and prayed for me is right near the top of the list.

Blessings,

Josiah and the Carman Crew

Summer days and not feeling well..

Lovin Family Pictures in Grandma's Garden!

Good morning,
Hope everyone is staying cool in the heat.  We cooked up some yummy treats this summer while inside.  James made a strawberry shortcake snake (a.k.a.  Strawberry Short"snake"), that was yummy. My favorite is Ice cream though.  I get spoiled every Tuesday night when I go to my Me-ma's house, they give me Chicken nuggets and ICE CREAM!

Enjoying some Ice Cream... Looks like we need to get more!

James creation..Strawberry Short"snake".  Yumm!

Our Garden loved the Rain!  You don't even see the
Onions, spinach, squash, cucumbers, Zucchini, Watermelon,
Cantaloupe or Pumpkins... The Lord has blessed!   

We have stayed busy, as usual. As most of you endured, we had many many weeks of no rain.   Hannah, said that she thought God needed to repaint the grass. :)  Well, He heard our prayer and we have had many days of rain and now our grass in green again. Our garden loved it too. We have a pumpkin almost as big as me. We have picked onions and frozen peppers, canned relish and ate yummy zucchini bread, tomatoes, cucumbers and more. We also caught a skunk (smelly..) and a raccoon eating our corn.


We continue to work on our new house and love it more each day. The Lord has blessed and we got Cabinets in last week (shared a picture at the bottom). Also, my uncle Marc has been working on the tile and making it look so pretty. Many projects to go but things are getting done day by day, so we might get to move in soon.

Iron man Josiah

Some of the fun things we got for our birthday are getting put to good use. I love James' Iron man mask. When I can steel it from him I love playing pretend and saving the world. Boy, do we need saving too, so glad that Jesus came to save us and that gives us all hope.  I also LOVE playing ball! So the basketball hoop that Grandma and Grandpa got us is used everyday. Also, James got a new bike that he rides and .... sometimes shares. So much fun.

James' new ride

Josiah made a basket..YAA!

Mommy was planing on posting that I was going to have some test done, so please pray for my sedation to go well.  We have waited 4 months to get these tests done and I have pretty much stayed healthy... till today.  Cozy in mommy's bed is where I like to stay on days like this. Got a fever, runny nose and bad cough.. no tests today.  Please pray I feel better soon so I can enjoy my days and have my tests soon.

Van Carman Family singers! :)

I also love to play instruments. Leah is learning to play the guitar and I love playing too. James loves to sing (like his grandpa :), so we all play well together. Momma calls us the Van Carman family singers... we just need a little more practice as you will see from James video, but we have so much fun!

This video mommy wanted to share. She is so very proud of me.  I am learning to sight read.  I tend to learn things a little slower so when I came and started to read words on the TV screen they didn't believe it. Mommy got some flash cards out and I would pick it up and read it to her. Now I love it when someone will sit and write words for me to read. I love showing what I know and learning new words.  Of course some of you might not understand the video because I sign most of my words. So when I see a word I know I usually say the beginning sounds as I sign it.  We thank the Lord for the ability to learn and can't wait to see what else I will surprise everyone with!


Hope you all enjoy your summer and stay cool.  May God bless you all. Thank you for stopping and checking on me, I love sharing my days with you.

Josiah

P.s. My first photo at the top is from family photos we had done at Grandma's.  Mommy is putting together cards to send out for all our friends and family. If you don't think mommy has your address (or even if you do :), please e-mail it to   jimandrachael10@yahoo.com   We would love to send you our family picture and you to send me yours... I LOVE pictures!! Thank you!

The Island.. can't wait to use that!

Cabinets CAME!  Still in progress but had to share!

5 Year old Birthday update!

Picture Parade. Fun Activities and a BIG 5 Year old Birthday... with yummy cake :)

                                                                Easter Picture

                                                        Easter egg hunt at Me-ma's

                                             Sunday Best, I had to wear a tie just like grandpa

                                                    Hannah's 9th birthday on March 28th

                                      Wormy mud cake for our birthday, I was signing "Happy Birthday"!

                                             Family portrait for our Big day

                                                     Birthday Boys!

                                                                     Couldn't leave my girls out

                                           Pa-pau and James with our favorite Ronald McDonald

                                                      Aunt Kendra and my sisters.
                                   Aunt Kendra made our Yummy Kit Kat cake ....yummmmm

                                                      Grandma Dee and Bubby James

                                                                 Party, Party, Party!!!

                                   I think this one will be everyone's favorite!  Thank you Aunt Kendra!

Long time since we last talked but life has been so very busy.  I have been doing great!  I am still going to Physical therapy twice a week and working on my speech. My family and I have stayed healthy ( praise the Lord), and have been able to do many fun activities.  Also,as you can see, James and I turned 5 on May 22nd!    We also have big news of a new cousin coming in October.  Uncle Josh and Aunt Lindsey are expecting and we so look forward to a new baby. I love babies!!  Also, my Uncle Ben (who has Down Syndrome) will be graduating on June 16..woo hoo, we are so proud of him.  Lots going on! So instead of boring you with lots of details of my very busy days, we figured we would posts lots of pictures.  Hope you enjoyed them and we will visit again soon.  Hope you all have a fun summer~!

Blessings,
Josiah