Becky will be two in two weeks. Where does the time go? She is just so sweet. She loves to take care of Casey. She hugs him and puts bandages on him. She is just too cute. They are the best of buddies. On the other hand she is so strong willed that she is a great challenge to parent. The boys were easily distracted ..If they wanted a piece of candy and I didnt' want them to have it, I could distract them..like "hey look at that worm over there" and they'd run..forgetting all about the candy. My daughter will follow behind me for an hour or so saying "candy"...relentlessly . She is speaking in two and three word phrases now so we know what she wants most of the time now. I was worried about a speech delay, but she's really caught up and even surpassed what she should be saying for her age. She can put on her own shoes and socks, brush her hair and teeth by herself, take off her diaper, get a new one, put on pants and shirts (with assistance). She is way too capable.
Zach is ready to go back to school. He loves school and the routine of it all. He's a bit discouraged that the elementary music programs have been cut from our district. Seems music is the first to go. It kept him interested in school and out of trouble. I hope he can find something else he will enjoy this year. He's a really great boy. I pray every day he stays that way.
Casey has been doing good. We are looking forward to the fall and some cooler weather. We're not able to do much outside during this hot weather ..fifteen minutes or so and he's all red. We spend alot of days in the little pool outside or in the sprinkler. He loves water. On hot days in school he runs errands around the school or stays in with his nurse and a friend he can pick. His school is sooooo good to him. I am going to miss them all next year. This september he will attend the same preschool but instead of the special education program he was in this year (at three years old) he is going to be mainstreamed into a regular universal preschool program in our school district. He proved this year that he can keep up with the others socially and physically. He is the most loved kid in his class for the teachers and the other kids. He really brings humor to that class. Like I've always approached life with Casey...assume he can do it until proven otherwise and work backwards then. He has exceeded all my expectations. He runs and jumps, rides his bike, climbs the swingset..and if he gets hurt, we just patch him up and send him back out. Nothing stops him from what he wants to do. He is more cautious than most kids his age in his approach to things but he has to be. This year (at four years old) he is finally becoming aware that there are differences between him and other kids. Last year a little boy asked him what is that on your neck? (referring to the trach) and he said ..What??? theres nothing on my neck silly!! ...this year, only one year later, I get..why do I have EB but Becky and Zachary don't? Well, this was my big parenting moment...I had my chance to say something profound and full of meaning...Instead I said....."cause YOU got screwed". ...There goes mother of the year again this year....that's all I could muster up. Pathetic, huh? But in many ways, true. :) ..He just started laughing and singing.."I got screwed" and the moment was over. Next time he asks, I'm going to be better prepared. I promise. ....Anyway, we are still battling eye infections off and on since the last corneal scratch. I have tried every drop, cream, itch, dry eye combo out there ...We've washed hands fifty times a day...cleaned up arm bandages that may rub against his eye many times a day..I am off for a second opinion later this month. Our highlight of the month was finding sandals that would fit Casey. Yes, his feet are wrapped ..but he really LOVES having sandals like his brother..and so far we have had no blisters from them....I know it's a little bit geeky to wear socks with sandals..but I'm not about to unwrap those feet..I'm most protective of his feet. Our lowpoint of the month was when we unwrapped his hands for bedtime.. If we don't unwrap them before bed we come in to find he has done it himself anyway..he hates them wrapped...so we compromise and unwrap them before bed. This particular evening he decided to stand on his bedrail and jump off like batman. Of course the rail could not hold his weight and down he went on the palm of one hand. All the skin peeled from the palm and was clumped on the side of his hand in a ball. He screamed like he hasn't done in ages...After I wrapped him all up, my husband says to him..."casey this is going to suck in a few days when it starts to heal" (casey hates itchy and it gets itchy and drives him mad as these types of wounds heal)..So casey says to him.. "what do you mean in a few days..it sucks RIGHT NOW"...and we all started laughing and he forgot all about the horrible hand wound. I wanted to punish him for saying such an awful word, but really....It did suck. .... The hand is healed up now and I don't think he'll try that one again. This month we are scheduled for a dexascan (bone density) and an echocardiogram as well as a dental visit. Casey's well visit went great. He gained another two pounds. He is just ounces shy of 40 pounds..and he is 39 inches..up an inch from last time.
I got alot of email last month asking me my feelings on the bone marrow transplants being done and if I have considered it for Casey. Honestly speaking, we have looked into the two different protocols being explored extensively..we had Becky and Zachary tested and they are not matches for Casey unfortunately. I may have been a bit more apt to do it if he had a SIBLING match. The age group Casey falls within has had the most complications. I follow each child closely and have spoken and met with the doctors doing both protocols. The protocol being explored in our closest hospital accepted Casey as a candidate, we set a tentative date and I backed out. He has on reserve two perfect matches from the public donor bank with a high cell count (more than what is needed for the study) but that will change as he grows and gains weight. The samples will become smaller in volume compared to his weight... They also found four very close matches they were happy with. I am just waiting for some sort of sign that says it's the right thing to do and I haven't gotten it yet. My heart still says it's not the right time..and I always follow my heart...Maybe it's a bit of my selfishness..not wanting to take a chance at losing him right now....I don't know...As he gets a bit older and they fine tune the chemo regimen, I am going to re explore. Never since Casey was born has there been so much hope for a cure. I hope funding continues to go to the right places.
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