These pictures of a bit of the downtime when we were in Houston are some of my favorites in a while...they seem to sum up the simple joys of childhood. No matter what is happening, no matter what news we are given, no matter what tomorrow holds, these kids seem to always find ways to enjoy each and every day...and so shall we.
We had about a day of rest when we got home from Houston (and after Easter) before we hit the ground running again with more dr appts for the kids. The first on the docket was Emma, funny enough, seeing one of her best friends' dads (and ENT here in town). Emma has been the unfortunate victim of "sister of a medically complicated brother" in that I have known for a good while now that she has more than likely needed her tonsils out. Once we started finding Abby sleeping on the couch every once in a while because Em was snoring so badly, I finally decided to bring it to everyone's attention.
Turns out that she fits most all the qualifications to take out her tonsils and adenoids without a sleep study, so she was a bit bummed. Hopefully this surgery, scheduled for this summer so she doesn't have to miss so much school, will help the poor kiddo stop sounding like Darth Vader when she sleeps. And I do have to mention that it is funny to have doctor visits with people that you know on a more casual basis beforehand. And by casual, I mean that Emma has had numerous playdates with his kids at his house...and even jumped into their pool fully clothed a few months ago...purposefully. He totally knows what he is getting into with this kiddo.
We had an appt with Nate's home pulmonologist the next day to review everything we did in Houston and all the new info. He did his second ever PFT and did outstanding with good results as well. I never would have imagined that he could perform a PFT at 4 years of age, and his pulmonologists here were pleasantly surprised as well. We are going to perform more extensive PFTs in the future (with mep, mip, and laying down) to hopefully see how much respiratory weakness we are dealing with here. The appt was a long, but really good one. We met with the fellow we have worked with for some time and love immensely, and we also saw an attending who we haven't seen in a little over 4 years. In fact, she was the very first pulmonary attending we saw the very first time Nate was hospitalized when he was 2 weeks old, and she remembered him so well. Turns out that he was quite the enigma then and this attending was so excited to see how well he is doing with the oxygen therapy now. It truly was an incredible visit with these doctors...a visit that encompassed quite a bit of medical talk with a lot of personal emotion talk of what is happening with our son and family...it was exactly what I have needed lately.
We thought we rounded out the marathon of appointments as of lately with a visit with Nate's surgeon today. This was, by far, the appt that he was looking forward to over the past few days. He genuinely loves his surgeon...so much that I can't adequately explain his admiration for this doctor in words. Nate spent a good amount of the appt just draped over his lap while we talked...it is something that is so heart-warming to see as a mother. I can not help the fact that my child has to sit hour upon hour in these white-walled rooms, listening to his mother talk about his life and medical oddities with countless doctors...so to witness him actually enjoying and looking forward to these interactions every once in a while is so touching in many aspects.
He also told me that he is publishing the data on Nate and 4 other kiddos with neuromuscular disorders who have had positive responses to gastric electrical stimulation. I am so very excited about this!! And a second mito patient has responded quite well to the temporary stimulator and is having the permanent stimulator placed tomorrow. I am very excited with the fact that this information is being published as a positive therapy for kids with mito and other neuromuscular diseases!
But it has truly been amazing to be reminded of God's bountiful blessings amidst everything. The friendships and relationships we have formed over the past 4 years in this medical world are such incredible blessings from our Lord. We have numerous nurses who treat Nate like their own child...giving him gifts, loving on him, and taking care of him when I need to talk to doctors. Each and every one of these people we encounter hold such a special place in our heart, and I am so very thankful that we have had the privilege to know and love each one of them. Like I told our pulmonologist yesterday, I truly wish life was different for Nate, but I wouldn't trade what we have learned and who we have met through this journey for anything. It is such a strange emotion.