Two days before Thanksgiving, Justin and I loaded up Akinya and took her to her appointment at the Cystic Fibrosis clinic at KU Med in Kansas City. We were hoping to complete the daytrip without either Grandma calling to see what we were doing/how things were going...after all, we hadn't told ANYBODY about our appointment and we were hoping that once the appointment was over, we could share good news with everybody!
You see, it started the week before Thanksgiving when we received a letter in the mail from the Kansas Department of Health & Environment. Apparently, when Akinya was in the hospital, they collected a blood sample from her for the typical newborn screening tests. Well, all her levels came back normal, except for her IRT level. Because it was elevated, they ran a DNA test and they found she had one of the gene mutations that causes Cystic Fibrosis. With that, they were having our primary care doctor set us up with a referral to KU Med for further testing.
Once we got to their Cystic Fibrosis center, they did what is called a "sweat test." This test is considered the gold standard for the life-threatening disease; based on the results, we'd know exactly what we would be dealing with. To do the test, they hooked several electrodes up to Akinya's arm to produce sweat; once the are started to produce sweat, they attached a round patch to her arm for the next 25 minutes. Once enough sweat was collected, they took the vial to the lab and we headed upstairs to meet with their Pediatrician.
About an hour later, the test results were ready and the pediatrician came into the exam room. Fortunately, our prayers were answered and the sweat test came back negative--Akinya does not have active Cystic Fibrosis. But rather, she's just a carrier of the disease. Long story short, the mutated gene she has is carried by people of European ancestry--meaning, I'm a carrier and passed the gene on to her. Justin doesn't carry any mutation, which is typical of the Black population. As I like to joke, good thing I didn't marry a white dude! But anyhow, because she only has one mutated gene, she'll have to make sure that whoever she has children with (and that better not be for like, 50 years!) is not a carrier of the disease--otherwise, they run the risk of having children who end up with full-blown Cystic Fibrosis.
Looking back, it was very random that we even ended up in this situation. In Kansas, IRT levels above 60 are sent on for DNA testing; in other states, they use a level of 190 as children with active Cystic Fibrosis usually have levels in the 200-300 range. Kansas decided to be very aggressive in setting their standards so that treatment could be started as early as possible for sick kiddos. Considering IRT levels can be elevated by a traumatic birth, jaundice and an epidural (which, we had all 3 of) and Akinya's number came in at 62, we now know that our family carries the mutated gene...but now we're also going to have a very expensive medical bill to pay! I'm tempted to send our bill to KDHE so they can pay it, but Justin said not to ;-) In all reality, though, we would pay any amount of money so that Akinya can have this knowledge when it comes to having children of her own some day. Which, to be honest, it was VERY weird to sit there in the doctor's office and think about your 3-week old daughter eventually procreating!
With that, we had a VERY thankful Thanksgiving! We celebrated the holiday at my parents, filled the family in on what had been going on and spent time catching up with the siblings, in-laws and my niece.
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| Celebrating with Grandma & Grandpa T |
But with enough time, Marcella warms right up! The week before, at Miss Marcella's birthday party (she turned two years old--eeeek!), we ended the evening with Marcella stroking Akinya. Something tells me that in just a few years, the two girls will forget about these awkward moments and they'll be the best of buds!
The Thanksgiving weekend also marked Akinya's 1-month "birthday." We got her up for the day, slapped the 1-month sticker on her onesie and took out the camera. And then, all hell broke loose. Mitzi wanted to be in the picture, but Akinya didn't know what to think of having the dog next to her...so, Akinya started freaking out and Mitzi refused to move. After some funny noises and gestures made by Justin, we managed to snap a picture of Akinya looking at one of us. It wasn't the "one of us" with the camera, but whatever, you take what you can get! And then you just crop the stressed dog out of the picture ;-)
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| Moody models! |
It's crazy to think our little Akinya Kate is already 1-month old. I'm not sure where the time has gone, but it's certainly a reminder to make every day count. Her well-baby visit was earlier this week and since coming home from the hospital, she's packed on 2 pounds and grown 1 inch...and I'm convinced her hair's grown an entire inch, too. No joke! It's crazy how much she changes with each passing day, but we're just thankful for the blessing she's been and the great health that we were able to celebrate!
so glad she's ok!!!
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