A Helmet for a Warrior

After we won the fight with the insurance company, the prosthetic company quickly scheduled an appointment for Nicholas to get fitted with his helmet. The longer the wait to get the helmet on his head, the longer he has to wear it because head growth does slow down after a certain age and so the helmet needs to be on longer in order to be effective. His appointment was scheduled for a Tuesday afternoon and we were asked to have his hair cut before the appointment. Because his hair is so long, they were worried that the plaster would stick in his hair and create some issues.

The Saturday before his appointment, we took Nicholas to the barber that Mike and Zachary use. Ironically, the barber is named Nick. He is amazing and we are very excited that we found him. He's originally from New York and his father moved here to retire and opened the shop. Nick took over the shop and according to Mike, it is exactly like a barber shop you'd find in NYC. Nick exclusively cuts Zachary's hair and Zachary asks constantly if it's time to go see Nick and get his hair cut. When we told Nick that we were there for Nicholas's first haircut in order to prepare him for his helmet, Nick smiled and cut Nicholas's hair with buzzers. He saved Nicholas's first curls for me and refused to charge us for the cut. It was hard to see Nicholas's adorable hair go away, but if it would assist in any way in helping him move forward with treatment, it was worth it.

The following Tuesday, Mike packed up all the kids while I went to work and off they went to the prosthetic office. Nicholas's head was covered with plaster (he wasn't very happy) and his helmet was sized. The plaster mold needed to sit for 24 hours and set and then was shipped off to be made. It takes two weeks for the helmet to be made and sent back to the local office, so it should be back soon.

The helmet works by creating space where they want the head to fill and a solid place where they either want the head to stay the same or change shape. He is checked by the prosthetic company on a fairly regular basis and they shave off parts of the helmet to encourage growth. We aren't sure how long he'll be required to wear the helmet, but we're guessing it will be several months. We also aren't exactly positive that this will work - that was part of the fight we had getting the neurosurgeon's office to prescribe the helmet, but we are hopeful for positive results.

We also found several companies that make decals for the helmets to make them cute and decorative. Zachary helped pick some and soon Nicholas will look like R2D2 thanks to his big brother.

Learning How To Be Sick

Last week Zachary caught a fairly nasty stomach bug. It started with diarrhea, progressed into a high fever and then ended with throwing up. He missed a taekwondo class (he would have been miserable and we really don't want to infect all those other kids) but was feeling well enough to attend an XMA (extreme martial arts) class on Friday afternoon.

We often tell Zachary that we share in this house. As any parent knows, something kids share very well and very often are germs. Once one is sick you can almost guarantee the others will be shortly also. And probably mom and dad at some point. All day Sunday, Emily was fairly cranky and clingy. She had a low grade fever around 100 but she's also getting two teeth so we decided that was likely what was causing her neediness and fever. She sat in her high chair next to us at dinner and played with toys while we ate and didn't seem to be uncomfortable, so when Mike picked her up and took her to her room to put her to bed when she started to slump and her eyes started to droop, it was a surprise to both of us when her low grade fever had gone up slightly. It was still not terribly high at just over 101 but higher than teething probably warranted. We gave her some Tylenol and put her to bed. I went in about ten minutes later to check on her and found her shaking (not like a seizure, but more like she was cold), breathing fast, and hands and feet that were purple. I was worried she was having low oxygen saturation and Mike ended up taking her to urgent care to be sure she was okay. The urgent care couldn't find anything out of the ordinary and told us it was likely a virus but that if she displayed those same symptoms again to take her to the emergency room.

At around 3 a.m. I was awakened by Mike telling me that Emily had a fever of 103 and he was getting ready to put her in the bath to try and cool her. This was only a few hours after her last dose of medicine and so we decided since she is so young and her fever was so high to go ahead and take her to the emergency room to be sure she was okay. Zach woke up during all the commotion and ended up cuddling up in bed with me while I waited to hear from Mike. The hospital tested Emily for a UTI and other illnesses and also determined that she had a nasty virus that has been traveling around town apparently and if we couldn't control her fever again, bring her back.

We started her on alternating meds - Tyelnol and ibuprofen - every three hours and seemed to have a handle on it. We were waiting for her to start throwing up or having diarrhea like Zach but she never ended up getting it. Monday afternoon, I had an appointment that I had to take Nicholas and Zachary to. Nicholas was fussy the entire time, but we were out for over 4 hours and I figured he was just sick of being in his car seat. When I would hold him, he would calm down. When we got home, I pulled him out of his car seat and his body was hot to the touch. Took his temperature and got 102.7. Gave him medication to help reduce the fever and started the watch on him as well.

Luckily when Zach was sick, I had reached out to my g-tube group on Facebook and asked how they handle a sick child. Nicholas had the nissen surgery, remember, and what that surgery does is effectively cuts off an upward path out of the stomach. Great for keeping his reflux in check so he doesn't aspirate on it. Terrible for throwing up when he's sick. The group told me that they would connect his extension and tape a diaper around the end so that anything he was trying to throw up could leave his stomach via an open pathway. After holding him and rocking him and trying to soothe him for an hour, I realized he may be sick and ended up trying the trick that the g-tube group had told me. As soon as I connected the extension and opened it, stuff began coming out of his stomach and he immediately stopped crying. In a typical turn of events, the kid who physically cannot throw up got the stomach virus. He "threw up" for a few minutes the first time and then I connected him again about an hour later and he "threw up" for a while the next time. After those two times, he seemed much better. His fever stayed in the 101-102 range overnight and then the next morning seemed to disappear - probably because the medication was steady and helping. We fed him Pedialyte for the next 24 hours to give his stomach time to heal from it's illness and he seems back to his happy little self again.