It's funny how I spend money on cool toys and Isaac would rather play with soup ladles and whisks. And tubes too, ooooo tubes!! Like a typical boy, he likes to pound things and see how much noise it can make. Needless to say he's very entertained while I cook dinner. I Love that he enjoys the simple things in life!Isaac is doing fantastic, on room air most of the day and very alert during his therapy sessions. His lab work has been really good too in the Potassium department. Yesterday I got a phone call from the Pulmonologist that we can discontinue 2 medications that he's chronically been taking for 4 years! I felt like I was walking on air when I hung up the phone. Finally a move forward! Now before I get all excited and think this means he will never take these meds again, we will need some prayer and positive thoughts. 4 years ago he blew up like a balloon and had chronic edema in all extremities. The cause of the edema was unknown as they did a bunch of tests and couldn't find a true explanation. Since then this has improved, but his Ped never wanted to "rock the boat" by weaning him off of it. Because he's been on a long term dose of diuretics, he was also put on a Potassium supplement. Without it his levels would've been critically low. So as of yesterday he no longer has to take the diuretic or Potassium. There is still a chance that he could swell up, but I'm hoping that doesn't happen.
Thanks for the prayers and for keeping up with our blog!
Today my 10 year old made a decision to get baptized. This made me a very proud Mama! Even though she's only 10 years old and has more growing up to do, her faith in God is way beyond her years. I couldn't be more proud of my amazing girl!
Isaac has been getting lots of snuggle time with his big sister lately. It's so nice to see him feeling good!
We had a few appointments this week. During one of Isaac's lab draws recently he had a strange red rash around his portacath. The nurse was afraid that he had cellulitis around it so I took him into his pediatrician to get it checked it out. He wasn't sure if it was irritation or infection and told us to take him into the ER if he got a fever or the rash looked worse. Of course after getting gray hairs over that, later on it disappeared! Meanwhile it's been hard to access lately and he's had the same one for over 3 years, so he's overdue for a change out.
The surgeon I met with yesterday was not the same one who put in his port 3 years ago, but I was very impressed with him. He seemed to know his stuff and most importantly was great with Isaac! He will do the procedure mid April. I was going to schedule it sooner, but somebody has a big birthday coming up! We also saw the Ophthalmologist and she increased his prescription for his specs. She noticed some abnormalities in the pigment of his eyes that was there last year, but she wants to look further into it when he's under anesthesia with the surgeon. She didn't specify what this meant exactly and said that it could mean multiple things or nothing. I will try not to worry over it, but I can't help but wonder.
Today is "Spread the Word, to End the Word" day. This means that us awesome Mama's of special needs kids are spreading the word that using the word "retard" is disrespectful. I'll be the first to admit that before having Isaac, especially when I was very young I used the word many times. It was funny to say "you are so retarded" around my friends. Yes, sometimes I even made fun of people with disabilities because it made me feel better about myself. How sad to think that I was so ignorant and disrespectful! How I wish I could turn back time and apologize to them.
It's no joke to throw this word around.There are many ways this term is used. I realize that when a Dr. says "mentally retarded", they are saying this in a medical term. Even though I wish it was described differently, such as my child has a developmental disability. In medical terms, such as a description of Isaac's chromosomal disorder it is said that he would be "profoundly retarded." Now when I think of someone in that state, I'm thinking of a person who just lays in bed all day with their mouth wide open. No interaction, no smiling, no understanding. That's just not him! 
Now if Autumn were to hear anyone saying that her brother is a "retard" or "retarded", she would seriously have to kick some butt! Keep in mind that she's a black belt in taekwondo:) It is just plain mean throw it out there when talking about a child with a disability. In this case, I'm NOT OK with it and you would have to deal with the grizzly bear Mama too.
Even though Isaac doesn't have Down Syndrome, this is a perfect example of a siblings love towards a brother or sister with a disability. Please watch and thank you for being kind to people with disabilities. http://www.youtube.com/watch?v=W7ENrWPZmc0&feature=youtu.be
It's funny how I spend money on cool toys and Isaac would rather play with soup ladles and whisks. And tubes too, ooooo tubes!! Like a typical boy, he likes to pound things and see how much noise it can make. Needless to say he's very entertained while I cook dinner. I Love that he enjoys the simple things in life!
