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!!