It’s been a whirlwind of a week. Last Wednesday was Zoo Day for the Children's Ministry and against my better judgment (I hate zoos with a fiery passion - right up there with Sea World and circuses), I decided to take baby K in order to spend some time with my husband. It was over 100 degrees so we rigged up a tent fan to her stroller and she hardly even broke a sweat! She did great, better than I did. My favorite sign was the one saying “We have created the Gorilla’s natural habitat. Please be quiet and remember you are in their environment.” Oh, right, ok.
Thursday was Movie Night at the church building so I took Kiersyn up for an hour or so until it was time for bed.
Sunday I left with Baby K to see her Pediatric GI at Texas Children’s in Houston. Thankfully, my mom was able to go with us because absolute chaos ensued when we got a few hours out. I-45 was completely shut down due to wildfires and I’ve truly never seen anything like it. There were cars EVERYWHERE. Every surrounding highway, road, gas station, fast food establishment, etc was packed with cars. Cell phones weren’t working because everyone was jamming the towers up and even GPS wasn’t working to tell us how to get around it. It was insanity but 7 hours and several back roads later we made it to Houston. Thank the Lord I was not alone and was able to sit in back and keep Kiersyn happy for the standstill traffic parts.
At Kiersyn’s appointment Monday morning, we talked about how Kiersyn does not do well when we have tried to take her off thickened feeds. The doctor decided to do a swallow study to see why. Kiersyn wasn’t allowed to eat 2 hours before which ended up meaning she had to go much longer than usual before eating. It was very unpleasant, for Kiersyn, for us and for everyone else in the radiology waiting room at Texas Children’s. Once they took her back, Kiersyn drank thin and thickened barium liquids while a radiologist and speech therapist watched the x-rays on a video screen. It was interesting to watch but also intimidating to have doctors standing around discussing my baby. The study basically showed that Kiersyn is not very coordinated at swallowing – instead of sucking and then swallowing, she sucks several times before swallowing, causing liquid to pool in her throat. It also sometimes mildly penetrates her vocal chords which may be the cause of her cough. We were told in order to get her off of thickened feeds we’ll just need to slowly decrease the amount of thickener to give her time to adjust. Good news all around.
However, the doctor told us the thickener we’ve been using, SimplyThick, just had a bulletin put out by the FDA because several premature babies have died from using it. AND some of it is also being recalled. (Some that is sitting in our pantry. Awesome.) She suggested using rice cereal to thicken instead. Well, when we got home I tried this for the first time and it did not go well. At all. Kiersyn choked on her spit up an hour after eating – her face turned nearly purple and she was having serious trouble breathing. It was terrifying. She projectile vomited everywhere. The doctor’s suggestion? Put her back on SimplyThick. Since that seemed insane to me, I tried half the suggested amount of cereal and so far we’ve been good to go.
Tuesday night was “family dinner” – since we all live in the metroplex, we meet up with my mom’s side of the family once a month for dinner. Kiersyn did well, but Danley wasn’t able to go which was disappointing. I am just thankful and so blessed to have my family nearby.
THEN today was Kiersyn’s 4 month appointment with her pediatrician. I hate her check ups. She does not handle vaccines well. I try to plan it so she will be hungry and can have a bottle right after but she still pulls off the bottle to scream. It’s terrible. In addition to shots, we also found out she has a Periorbital Dermoid Cyst under her left eyebrow. It’s a congenital cyst, something she was born with, that has only just now grown enough to be visible. Unfortunately it will continue to grow, and since this type of cyst is dangerous to drain and can cause complications it must be surgically removed. Tomorrow I call to schedule a consultation with a pediatric surgeon.
It seriously seems ridiculous that every time we get past something with Kiersyn, we find something new. I absolutely hate that this time it means surgery.
I also hate that all of this is taking place during Danley’s busiest time ever. It is VBS work week and he is gone sun up to sun down. Next week is VBS and then he is gone to Oklahoma for camp for another week. We are living pretty separate lives right now – he comes home, I update him on Kiersyn and it’s time for bed. He’s doing important work, and I’m so proud of him – It’s just so hard to sit through these appointments without him.
I also hate how much I continue to struggle with worry and emotional exhaustion.
I pray and hope for all this to end for my baby girl. I’m ready for her to be past medications, discomfort, allergies, reflux, surgery… but I’m desperately desiring deliverance from myself – from my tendency to hold on to unending worry. I know worry is rooted in fear and I’m tired of being a fearful person, incapable of giving it to God and letting go.
I found and spoke to another mom whose son had the same surgery Kiersyn will have and she said something that I’m taking to heart. I really have no energy for further reflection so I’ll leave you with her words:
“I feel confident that this journey has taught me a great deal, the least of which is to be thankful for what you have and to not fear what you might lose. Or else, you've already lost it because living in fear is not really living. I'm not sure how long it will take me to get there but that is the direction in which I am heading... living a life without fear.”
y my parents who came by and mowed the yard, cleaned the house, bought groceries, folded the laundry and even ironed. I'd probably have gone crazy by now if it weren't for them. In light of the past few weeks' depressing/boring updates I thought I'd try
to balance
it out with some pictures. Enjoy.
