We visited with a neurodevelopmental pediatric specialist.
I was overwhelmed, driving two hours with two kids for a two plus hour appointment to then drive two hours home. I normally take my dad with me to clinics to help out with the kids so I can actually communicate with the doctors, but he was home packing for his trip to visit his family in Spain.
Most of the visit went well. I only had to carry both kids through the parking deck by their arms because they both decided at the same time that their feet were not working.
The conclusion of this visit is that Nathan is an inflexible, rigid personality. No drugs required thank God, he needs no more medicine than he is already on.
Basically for a normal child, the parent would decrease the amount of pediasure/milk to increase hunger to the point where the child would eat. This does not hold true for Nathan. He is so strong willed that he would rather starve and dehydrate himself – remember how his blood sugar was crashing at 24 when he was admitted to the PICU a few weeks ago.
We left this visit with a referral to a applied behavioral analyst at a feeding and swallowing clinic.
As soon as we returned home, we had to hop right back in the car to drive my dad and brother to the bus stop. Being that the bus stop was 5 minutes from my husband’s job and my anxiety level was peaking, we made a quick visit at the end of his work day to meet his coworkers.
Perk of the visit: sending kids home in daddy’s car, making a pit stop to walk around DSW aimlessly, trying on shoes, and not spending a penny.
A pretty low key day at home. Had business to take care of and needed to be home for two clients to stop by.
Another visit to the hospital, this time to see Nathan’s CF team and pulmonogist.
My father in law watched Teagan which helped tremendously.
The traffic stunk but what was even worse – forgetting my wallet at home, no money for breakfast, no money for parking, no money for lunch, no money period.
We arrived 15 minutes late because of the horrible traffic, I kept popping off the highway to take parallel running back roads.
Nathan and I had some deep conversations about whether or not I had Nathan when I was a baby. One main conclusion to our discussion is that Nathan wants “this many *raise both hands, ten fingers* baby brothers”. He says he will ask God to give him baby brothers and the proceeded to name them all funky names beginning with “sinbastar”.
Sorry Nathan, but looks like you will have to be happy with one little sister named Teagan.
Clinic update: Nathan is 36 pounds, not terrible but slowly falling off his curve. We definitely need to follow up with feeding and swallowing clinic ASAP. His doctor brought up the possibility of utilizing a feeding tube (gtube) again.
Since we know limiting the pediasure isn’t going to lead him to eat solid food, we are temporarily lifting the limit on his pediasure consumption. For the time being he should be having 4-5 cans of the 1.5 cal pediasure.
If his stool sample still cultures c. dif (I already collected, it’s in the test tube, triple bagged thanks to mother in law, in my freezer) then after he finishes flagyl next week he will go on vankomycin.
By the time we finished up at clinic I was starting to get dizzy. It was mid afternoon and I was still running on an empty stomach, not even a spark or a pumpkin spice latte to carry me over. I googled that domino’s pizza accepted paypal but my phone was nearly dead, my dad’s kindle wouldn’t connect to the wireless, and I had no money to exit parking deck.
Luckily, at the gate I called an attendant to explain the problem to and he gave me a deferred payment slip.
And then my husband came to the rescue and ordered me a Hawaiian pizza and a diet coke at a nearby domino’s and managed to give me directions just before my phone died.
A day of mixed emotions, spent crafting and woodworking. Don’t feel like revisiting much of what I felt today.
…will be a new day and a clean slate. Praying for my soul friend who is having surgery early tomorrow morning.