I believe there are angels among us.
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To sho​w us how to live
To teac​h us how to give
To guide us with the light of love
Alabama​

As I have walked this path over the last four and a half years, many angels have crossed my path. Whether it is friends being there at the right moment, family offering support or strangers who have gone out of there way to lend a hand and touch our lives. I wanted to recognize some of MY angels today.

Let me start by saying so many of you reading this have been there for me in so many ways. There is no way I could possibly mention each of you. Please know you are all important and have all helped me on this journey we call life.

First and foremost, my Mom. Since I was a little girl my Mom has been my strongest ally and my most trusted confidant. She is behind me 100%. She is my rock. I have always respected and loved her, but our relationshi​p has grown immensely in the last four years. You see Alex can tell you. he is Mimi's boy. Watching there relationshi​p grow has been one of my greatest joys and has produced some of my warmest memories. Mom, I love you.

Mariah- You could of ever imagined the path our friendship has taken. For those of you who don't know let me explain. Mariah and I both joined an internet support group in the first two years of our children's lives when we thought they had "food allergies". On this website we started responding to each other, but were certainly not friends. In May of 2006, Mariah took her girls to Cincinnati to see Dr. Putnam. Alex was scheduled to see the same Dr. one month later. Mariah graciously offered to have me call her so I would know what to expect. That call changed our lives. Since that time Mariah and I have nurtured a treasured friendship. Our kids have walked a similar path through the diagnoses of Eosiniphili​c Enteropathy and then Mito. We have shared our greatest joys and our deepest fears. When I am mad, scared, confused, happy it is Mariah I pick up the phone to call. Our lives are identical in so many ways. I know there is always an understandi​ng ear on the other end. Mariah- Thank you for always being there, for always listening and mostly for always understandi​ng. mariah- I love you. i don't know how I could walk this path without you.

And last, A stranger named Shannon who is about to make Alex's dreams come true. Two summers ago while visiting Mimi and PopPop, we came across a place called Preservatio​n Station. At one of the local shopping centers you could hold and have your picture taken with a baby tiger. Alex at the age of almost 3, gladly cuddled that "sweet little tiger". Last year, we made sure to return to once again hold a tiger. We knew that they had a very in depth hands on tour where you could interact with animals on a 50 acre preserve, but the minimum age limit was 6. Both years we asked if they ever made exceptions, but we were told 6 it is.
After the year Alex has had, Mimi felt like he deserved a special treat so she took it upon herself to contact preservatio​n station. She wound up in touch with Shannon the tour coodinator. And you guessed it....Shann​on and the director have granted permission for Alex to take the tour. So this Friday, my little buggy will get to play with baby tigers, hold chimpanzees​, feed an elephant, allow a hawk to land on his arm, and so much more. We are SO excited. Without the kindness of these strangers who were touched by Alex's story this dream would have never come true. I have held off telling about this because we are still working out the finances as this is pretty expensive, but we will make it happen regardless of the cost. It is truly a once in a lifetime opportunity.​

To all the doctors, nurses, child life specialists​, internet friends, real life friends and family...Th​ank you for being angels in my life and for touching me.

What a blessing this time at home continues to be! I haven't updated because there is NO news!!! Do you have any idea how many times in the last year I have longed for quiet, peaceful times at home with no news!

Let's see... We were all really sad to see Grandpa off Monday morning! Alex had so much fun with him. We can't wait for him to come back. Alex actually asked him to move in with us.

Monday was Horseback riding. Alex really enjoys riding. We are working on some "actual skills" now. He is learning to use his reins to stop and turn. He is also trying to build up some leg strength so he can hold his butt off the saddle. When he can progress on these things we will move him to a bigger horse and start trotting.

Tu​esday we saw Dr. Benzick, our beloved pediatricia​n. It was so good to see him and nurse Judy. For so long they walked every step of this journey with us. They were so loyal and steadfast in trying to help us figure Alex out. In the past year, we haven't seen them nearly as much. At one point we were actually seeing them weekly. So it was really nice to catch up. Dr. Benzick was thrilled with how Alex looked. He has gained weight since they saw him last and just "looks" healthy and happy right now. He was in 100% agreement about school or the lack thereof. So I have found a sense of peace. I trust Dr. Benzick implicitly. I know he has Alex's best interests at heart. He also sees "normal" kids so he comes at things from a more normal perspective then Dr. Koenig. So while I don't trust one more then the other, it is nice to have both opinions.

Ye​sterday, we ran labs in the morning and then played with Allison, Brookie and Peyton. I had to chuckle to myself yesterday. For a long time, Alex plain out didn't like Peyton. She would drive him crazy! The last year though she is growing up and we had seen some improvement in their relationshi​p. Well, yesterday there were times when Alex and Peyton were playing together and Brooke was by herself. Allison- Did you ever think we would see that day? All in all, the three kiddos had a great time. Allison and I always love catching up. The relationshi​p with my playgroup girls is such a treasured one. It is so relaxed. Because we have spent so much of each others lives together over the last almost 5 years, it just "is". We are comfortable in each others homes and with each others kids and relaxed is the best I can describe it. But boy do I need it!

Labs were awesome (for Alex) again yesterday!!!! We still have a few things off, but I'm not sure we'll ever have totally normal labs. His liver numbers and triglycerid​es while still high are trending down. His pancreas numbers are normal!!! And the most exciting for me...his blood counts held steady this week which means the procrit may be starting to work. I would be ecstatic if we could avoid transfusion​s!

So now for my big news... We are going to Mimi and PopPop's next week!!!! I am so excited. This has been a thought for a long time. Aunt Jenn-Jenn and Skye-Skye have had a trip planned for a while. I was too scared to book airline tickets or get excited about going until we knew Alex was well enough to handle the trip. So this week we finally decided it was safe to travel! We are leaving next Wednesday and staying until May 9th.

Other then that life is pretty good around here. Bruce has a few job possibiliti​es and continues to plug away. The Wii Wars have returned and I continue to kick Bruce's butt! Alex has joined in on the fun. He has a few games he will play with us now. Even Theresa (our nurse) gets in on the fun sometimes.

P​lease Pray for continues health, happiness and safe travels.
Ali

Alex continues to thrive at home! We have not had any vomiting or even a need to use nausea medication since Tuesday! We are just enjoying nice family time.

Bruce is still job hunting and hoping to get something soon. He had a positive interview this week so we are hoping good news is just around the corner.

I also wanted to let everyone know something I have been keeping to myself. Most likely Alex will not be going to school in the fall. Dr. Koenig and Dr. Pacheco have always encouraged me to help Alex live as normal a life as possible. Dr. Koenig and I have spoken about the accomodatio​ns needed fro Alex to attend public school. So I thought everyone would share my joy when we registered Alex for Kindergarte​n. However, Dr. pacheco feels VERY strongly that Alex not go to school this year. She feels like it could be very detrimental to his health. I tried to convince them otherwise, but they are pretty set that this is the right choice. They feel like since Alex spent the better part of 9 months in the hospital after minimal exposure to illness, his body cannot handle the strain it would be placed under by going to school. They feel like one year home is better then causing him to become extremely sick and regress. We will revisit the school situation before first grade. I have had time to process this and am okay with it. Alex and I are excited to begin a homeschool curriculum based entirely on animals. He actually wants to start school now!

Thanks for continuing to check on us.
Ali