Getting Healthy........

Sorry about the lack of blog posts. I've been busy lately trying to get healthy after many months of snuggling with the boy at home (which I love) AND eating fattening foods. If I've learned anything about this journey with a special needs/medically fragile child, I've learned that balance is the key. Most of my days are filled with scheduling appointments, medications, breathing treatments and therapy sessions. If I take a small portion of it focusing on a goal for my health it makes a big difference in how I feel! When Isaac has a nurse in the mornings I've been working out. Yesterday I went to a zumba class for the first time. I was really nervous since I'm so uncoordinated, but it was fun and I had a couple of good friends cheering me on.

Speaking of health, Isaac has been keeping us on our toes as usual. He was cutting those molars and may have had a cold that caused his 02 needs to be all over the place again. I had to call the Pulmonologist on Friday for a plan, but by Sunday he was on room air. Crazy kid! We were going to send in a culture to see if he had an infection, but now it doesn't seem like he needs it. Hopefully we can keep him at baseline.

Isaac has been enjoying his therapy sessions and his teacher came over last week to help him make insta-snow. It was the coolest thing! (Sorry about the quality, I took these on the ipod).
.....And I cut his hair really short. Now he looks SO SUPER handsome!

Snow Day!!

Autumn and Brownie are having a blast playing in the snow and going sledding! Almost all of the schools are closed today in the inland northwest. I'm trying to decide if it would be safe to take Isaac out in the snow. He's never been sledding before, but I would worry about him getting snow/water in the trach and the air being too cold for his lungs. Oh well, he doesn't look seem overly disappointed that he's not outside. As usual, some things come to mind when our city has this much snow. Will the power go out? What is our game plan if we there is an emergency and we can't get him to the hospital? Will the nurses be able to come out here? Will they be stuck here? These are things I can't worry about too much or I'll make myself crazy! After the nurse left this morning, I got to snuggle up with this sweet little man and a hot cup of coffee. What could be better?

Back On The O2

So the oxygen is back in full swing lately. Isaac has been a junky boy in his lungs and needing the 02 during the days and nights...the amount has been all over the place. The nurse and I felt 2 molars coming in that may be throwing him off. No fever, no yellow color in his trach so he doesn't have an infection. He's been a good sport though as we've been giving him more neb treatments. We just have to pull out a few more tricks to get him back to baseline.

Last week he got weighed by the dietitian and he finally hit the 30 pound mark! That is really small for someone his age, but at least he's growing.

Carter's Hope

Isaac's story was featured in a new website called Carter's Hope. Carter was an adorable little guy with a rare chromosome disorder like Isaac. Sadly he went to heaven way too soon, but his journey lives on as his amazing Mom has made this website in his honor. I remember getting the overwhelming news that Isaac would have special needs. When I came across blogs, poems or positive stories it kept me going during those first few months. Carter's hope has stories of hope from parents who have been there through the tough times and JOYS of having a child with special needs.

Getting Organized

Life as we know it is back on schedule with the nurses, therapists, teacher and medical suppliers ringing the doorbell (insert me pulling my hair out). Appointments are made for part of 2012. Calendars are bought. I'm going through the medication list and getting rid of some PRN's (as needed) meds that Isaac hasn't used in a long time. Back to reality...my crazy normal. If only I was this organized with the rest of my life, but my little man is at the top of the list.

Today I decided to go to a sale for organizers and bins since Isaac has more toys than I know what to do with in his playroom. I thought I would buy an extra one for Isaac to sit in and play with his colorful balls. I think he likes it:)