Life has been a whirlwind since Kylan first got sick in July. I am sleep deprived and just getting by day to day seems impossible some days.

Update on Kylan

After Kylan had his MRI in September, his ID doctor called us the next day as soon as he saw the results and told us to get to his office immediately. Unfortunately Kylan’s leg still had infection, so he was sent to the children’s hospital while they gave him his first dose of a new IV antibiotic.

On September 24th Kylan had a procedure done to move his picc line from his right arm to his left arm. This happened because we had made multiple visits to the ER regarding his picc line. It was oozing thick yellow liquid and was really itchy, but the site itself was great and was not infected. The ER doctor suggested that he could be having a reaction to the dressing on his picc line, but because his skin was so irritated underneath the tape, we made the decision to have it moved to his other arm and his home nurse would come the next day to apply a different dressing.

The next day, September 25, he was admitted into the hospital for an allergic reaction to the medication. His ID doctor first ruled out an allergic reaction to the medication and gave him a dose while he was there. No more than 10 minutes after the IV finished, Kylan was miserable. He was covered in a rash and blisters were forming right before our eyes.

We spent another two nights at the hospital, but thankfully this time around he wasn’t in unbearable pain.

We are now on a different medication and his body has been tolerating it well. Unfortunately, it takes 2+ hours to drip so that requires me to be up at 4 a.m. each morning. We were told he needed it every 8 hours and we made it work for the first few days, but it was nearly impossible for us to administer his mid-day dose each day because of our work schedules. By the time I started his 8 p.m. dose, it was nearly midnight before I could make it to bed, only to get up at 4 a.m. the next morning to start his morning dose.

Thankfully, his ID doctor told us to just give it twice a day. Now we give it at 4 a.m. so he can go to school and then give it again at 4 p.m. I’m not crazy about Kylan getting up at 4 and being up the rest of the day when his body is still trying to heal, not to mention all of the illnesses he is being exposed to at school, but his doctor said he didn’t need homebound or abbreviated days.

Life Lately

Even though I have been worn out, I have had such sweet friends to get me through. I won 4 tickets to a local Teacher’s Night Out event and took the absolute best friends I could ever ask for! One of them was Koby’s teacher when we first moved to Virginia and the other two are his current teacher and her aide. Each of these ladies mean the world to me and I am so thankful I was able to have a night out with them. Pasta galore, the best chocolate cake I’ve ever had, and photo booth pictures. I had the time of my life!

Last weekend one of my AMAZING coworkers made our family a home cooked meal and delivered it to our house.

Later that night we went to a local haunted house and the kids got to shoot zombies in the dark with paintball guns. It was so much fun! Because it was an event for special needs kiddos, it was kid appropriate and not too scary. We were so happy that Kylan could participate where it didn’t involve any sudden movements or physical activity.

We even went through the haunted house!

School dismissed early yesterday for fall break so I took the kids to Sweet Frog for some froyo. I like to think that I will be productive and get a lot done during our break, but haven’t been very motivated lately. Rather than The Motivated Mama I’ve been The Not-So Motivated Mama.

How do you stay motivated? Let me know in the comments below!