Hello all and Happy Thanksgiving. Can't belive it's that time of year already. The holidays just creep up on me and I find myself unprepared every time. For Thanksgiving we will be joining my family for a feast at my sister's house. My children just love their Aunt Kelly..We always say she is their "mom away from mom"..like John and I could die tomorrow and as long as they had her they wouldn't even miss us... :) When we think about all we are thankful for this holiday my sister is tops on my list. I don't know what we would all do without her. My fellow EB moms know how one family member usually steps up to help in every way possible..to learn all there is to learn... to do whatever you need them to do..who is NEVER absorbed so much in their own life that they don't have time to spend with us. .....For us that is my sister. Let's face it, we are all busy..we all have things that take our time and obligations that keep us busy and prevent us from spending time with the ones we love..but we all find time to do what we REALLY want to do...It's not like we don't HAVE the time..we just choose to use it in other ways. I miss visiting my friends and family as much as I used to but it's just not so easy anymore. Casey's needs consume almost my ENTIRE day. To keep him alive, healthy, coordinate his care, keep up on supplies, Dr. appointments and therapies is a full time job and leaving the house most days is just not an option when it takes two hours just to bathe him. I thank the friends and family that understand that and am sorry for the ones who can't.
The kids have been good. Zach was chosen to participate in a day of trombone workshops with a trombone player from the metropolitan opera. It was a great oportunity for him and he really loved it. So many of our family members came out to watch him in his concert that night and for that he was so proud. Thank you guys for making it special for him. School has been going nicely for him this year too. He loves the teacher. He is such a smart boy. I can only remember a handful of times he did not score 100 on a test. And he got first chair in the fifth grade band..(may I brag that he is only in FOURTH grade) :) He really makes me proud. Becky is growing up fast. She is a beautiful little angel. She doesn't give me an OUNCE of greif. She's a special little girl with a special purpose in our family.
Casey has been good too. I almost hate to say it and jinx myself. The only problem I'm seeing that bothers me right now is that one toe is turning towards the bottom of his foot and the skin is tight and pulling it down. I've decided to unwrap them in the evening so that he can walk barefoot and sleep unwrapped and wiggle them around a bit in hopes of stretching it a bit.(I just pray his little sister doesn't step on them)...It's just one of the complications of EB..Anyone with any good suggestions, can feel free to email me..I'm not sure what to do about it..if he straightens the toe it pulls the skin and hurts..(Adele...any thoughts, you are my EB expert..... :) At his last physical he had gained two pounds and grew two inches. This is thanks to the great blended organic food diet his AWESOME nutritionist opened my eyes to. It has made an incredible difference in the vomiting and his energy level has doubled. He just looks healthier and feels so much better and wound healing is so much faster with the right nutrition.. And he is loving school. He's the class pet and I'm not surprised. He has the personality that can light up a room. The kids in school love him. We are due this winter for a bronchoscope..actually overdue. We keep procrastinating. I don't like to fly in the winter. We've had too many bad experiences with the weather..and the prices for airline tickets skyrocket this time of year..We've been looking at an average of 550.00 a ticket. That's not in the budget right now..Heck, bread and milk isn't even in the budget right now. Since Casey's been born I have never before been stretched as much physically, emotionally, financially or spiritually. I have just been drained. Casey has a sinus infection again..and the associated eye infections that go along with his. We're back on antibiotics..(the joys of preschool)..before that is was a stomach virus (the joys of preschool) and a cold (the joys of preschool) and pink eye (the joys again of preschool)...
Well, as everyone gathers tomorrow, take a few minutes out of your day to reflect upon all you have in your lives to be thankful for. We all have more than we realize. We are all so hurried and busy every day that we tend to overlook our blessings ... Make sure your family and friends know how much they mean to you and tell your children how much you love them.
Happy Thanksgiving to all our friends and family and special prayers to all our EB friends..May you have a peaceful holiday weekend.
John, Beth, Zachary, Casey and Becky