We started the day by dancing to music as loud as we could stand in the living room. I danced with Emma first as Nathan followed us around with puppy dog eyes while repeating "My turn. My turn." As I spun him around until we were both dizzy, I tried so hard to memorize his adorable toddler laugh into my mind...just like I have tried to do so many times previously with the girls. But you forget that sound over time...that high-pitched shrill of happiness. I love that sound.
This week has been full...full of chores, full of medical stuff, full of childhood wonderment, full of happiness. Amidst the insane duties we had this week, we still had a whole lot of fun. Maybe its the warm spring air; maybe its the numerous antihistamines that are required to function with the sea of pollen on our doorstep...but whatever it is, this week has been a good one. Nathan had 2 therapies this week...one where he did excellent and one where he was so-so because it just so happened to be one of his "off" days where he was extra tired and his breathing was more labored. We are really trying hard to help strengthen the little guy up before the craziness of summer begins where he has a tougher time with the higher temps, which seems to affect his entire system at times. He is loving therapy these days and has started aquatic therapy...he LOVES to "swim with Miss Holly" (which is what he mentions numerous times throughout the week). It doesn't help that she is a cute young blonde who I totally think Nate has a serious 2-year-old crush on. He talks about "Miss Holly" all the time. We also had 2 sub-specialty appts this week...immunology and neurology. After this week, I am once again so very thankful that God has blessed us with an incredible team at Shands. Now that we have been in the "system" for a couple of years, all of Nate's doctors know us and are understanding how this disease affects him better. We have created long-lasting relationships with so many people we have met on this journey, including the medical professionals caring for Nathan. It's an odd thing to think about, but I am exceedingly thankful that God has blessed us to meet these people.
Anyway, Immunology went well. His IgG was up a bit and in the low-normal range. The last reading was pretty low in December, which was right before he started getting sick back to back to back. Our immuno told me to make sure she is informed the next time he is inpatient in case he is pretty low again and potentially needs IVIG to tank him back up. We did find out yesterday that he is losing his titers to his pneumococcal vaccine, which seems to be a problem with some mito patients, so she wants us to get him a pneumovax. I look forward to talking with the immuno/pulmo in Houston about all of this.
The neurology appt yesterday was good as well. Our neuro is amazing...simply amazing. We spent a good portion of the appt talking about the upcoming mitochondrial grand rounds meeting we are going to have at Shands with a mito specialist from Cleveland. We and our neurologist have visions of having a mitochondrial clinic in our hospital in the near future, and this grand rounds may be the catalyst to jump start those plans...at least we can hope and dream. Nathan's exam was good...he really is doing well right now. He has a few things that are concerning and perplexing, and I hope to get more clarification at next week's visit in Houston on these issues.
The little guy has graduated to a bigger cannula! The infant cannula has been too small for him for a few weeks, but he absolutely would not trade over to the bigger pediatric cannula. Every time I would try the bigger one on him, he would take it off and try to put the infant one back on. But, the infant one was having a harder time staying on at night, and it was always pulling at his nostrils. Finally, Jay got him to switch over, and he hasn't looked back since. This bigger pediatric cannula is so much better!! Even though it is bigger and a bit more noticeable, it doesn't get stuck nearly as often, it is is easier for Nate to grip and pull himself when he is running throughout the house.
To make this post even longer, I wanted to add some recent pics of Emma's daily shaving adventures. This kid shaves nearly every morning. Apparently, just shaving her chin was not cutting the full facial hair/werewolf appearance, so she has decided to start lathering her entire face to be shaved.
I have to admit that this is something that I hope to always remember. She has been shaving her face for so long now, and she even has her own "Toy Story" razor. I love it...just love it all.
The girls are going to be with church members for the majority of the week next week (its Abby's spring break), and Nathan and I will be in Houston Monday through Friday. Its always hard to be split up as a family, but to be split in three different directions will be especially difficult. I pray that the week with go smoothly for all of us Five Ferrells.