Dylan W Levy
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Preparing for School...

8/23/2011

3 Comments

 
All his supplies have been bought. He has his new back pack and lunchbox. He has already picked out his outfit for tomorrow. I can't believe it...my little boy is starting first grade. Today's game plan is to sort through all of his old
clothes and get his new ones ready. It is quite the task as Dylan has a lot of clothing. He has grown like a weed and nothing from last school year fits him. Pants and shirts are about an inch too short and I am loving every minute of it. He is truly healthy now and it shows. Given Dylan's medical history school supplies and new clothes are not the only thing we have to have for the school year.

Yesterday was Dylan's clinic check at Lucile Packard. It had been two months since his last visit.  We really wanted to get him in before school started to see if there was any tweaking that needed to be done. Dylan had a full room yesterday. I think with the exception of the surgeons everyone from his transplant team was there. It was really great to see them all again. During the whole process you really form bonds with the team. They have seen you at your lowest and highest points. They ride the rollercoaster with you. Dylan's team has become family. While Dylan entertained everyone Noah and I spoke with the GI doctor.

I explained his belly issues from last month and asked what she thought it could be. We all agreed that it was not liver/medication related. I told her I felt it was possibly an allergy. Maybe something new had developed. Dylan has been riddled with food allergies since he was a baby. He has anaphylaxis to dairy and salmon (which is a new allergy) and a slightly less severe allergy to peanuts. I would get him in with an allergist at Kaiser, but it is hard when their area of expertise is NOT transplant and immunosupression. It is one of those things that even though it is unrelated to transplant, transplant still plays a huge role in it all. LPCH will be asking for a referral from Dylan's GI at Kaiser to see their allergists. One fantastic thing about LPCH is that they have some of the most amazing doctors, in ALL fields of medicine. So now we wait...

As of today Dylan's liver is extremely happy. All of his blood work is normal. Dylan has grown an amazing two and a half inches in six months. He has gained just about 7 pounds. It is amazing what a healthy liver will do for a kid. Dylan has been moved to clinic visits every four months and labs every two months. I think back to when he was a baby. This time six years ago I was adjusting to life with a BA baby. He was having weekly lab draws. Medicating a two month old was so new to me. Dylan had just had his Kasai a week before. I had no idea what kind of future my little guy would have or if he even had one at all. Now he is transplanted and doing better than anyone could have hoped for. Dylan's future is bright. He will grow up and do amazing things. We still live life one day at a time, but these days each day is so much better!
Picture
Dylan hanging out...last day of summer!
Picture
Dylan six years ago!

-Amber
3 Comments
Ed - from Dallas, TX.
8/24/2011 02:59:57 am

Hello Levy family,

This will be my last post of your site, but it is for good reason. Your Dylan is happy and apparently healthy! My family and I have said prayers for him, and for all of you, over the last several months. Apparently they truly do work, and they are wonderful. I am so glad Dyaln has responded so well to the new liver, and that is seems his worst days are behind him. I hope your soon-to-be new arrival will also be happy and healthy, but from the start! Life is a grand thing, even when you are down and out. Remember how you felt several months ago, and think how you feel today - big differnce. What it proves - is that you NEVER give up hope, and with God's grace things will turn out good one way or the other. If you believe . . . they ALWAYS do. Live each day like it could be your last, and love your family more than you did in the past. Family is everything! I hope your family has nothing but happiness and health going forward, and that you all have a great life.

Thank you for this blog, and for putting your situation up for all to see. It has certainly shined a light on my already strong faith, and once again reaffirmed my belief in living each day with love and vigor.

Appreciate the small things, and you will always be happy!

Reply
Lori Levy
8/24/2011 10:51:32 am

Wow ...What an amazing journal entry...I love that Dylan is healthy and looking forward to school. Xo!!!

Reply
Amber
8/25/2011 11:02:34 am

Ed-

I wanted to thank you for all of your uplifting comments through out our journey. We are blessed to have Dylan so healthy and I truly believe it is from all the prayers that have been said on his behalf. Thank you for always taking the time to read about Dylan. We wish you and your family nothing but happiness and health as well.

-Amber

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