October Medical Update
September and October were crazy months for the Heasley household! Between appointments every week, a trip to PIttsburgh, a trip to Dallas, having family in town and business trips to LA - we are ready for a breather. Fortunately throughout the chaos we have received good news at all of Hattie's appointments.
In late September, we had our first appointment with Urology - primarily to look for a reason why Hattie has been having so many Urinary Tract Infections throughout these first few months. It got to the point where we could tell when one was coming on - Hattie wouldn't have as many wet diapers, wouldn't eat and would start to throw up. Our pediatrician, Dr. Kallio, has been nothing short of amazing throughout the months. She has always been willing to take us in for a visit or help us over the phone. The hardest part about the UTIs was probably the antibiotics, which we would have to administer through a syringe. It tasted awful (we tasted it) and Hattie would gag and eventually throw up her entire bottle. Urology initially suspected that she may have Vesicoureteral Reflux, which means the urine is going back up into the kidneys from the bladder, causing infection. We went in for a procedure on September 20 where they basically administered a solution into her bladder that would glow on X-Rays and the doctor watched to see if the glow could be seen going up the ureters and into the kidney. Hattie passed with flying colors! There was no sign of reflux. Hattie - 1 , Vesicoureteral Reflux - 0.
We had another 24-hour heart monitor to do with Hattie as Cardiology was wanting to keep an eye on her heart for any more SVT (heart beating rapidly at 200 bpm+). She passed that one again (for a second time). Hattie - 2 , Supraventrical Tachycardia - 0.
The last week of September, Hattie had to go in for an EEG, or "Electroencephalogram" (say that five times fast) to see if they could detect any seizure activity in the brain. She had this done multiple times during her time in the hospital in late June. I have to say - it was pretty scary looking. They hook a ton of probes up to Hattie's head and then do multiple things to try and trigger a seizure (strobe lights, light patterns, sounds, etc.) They did this for about 2 hours. Abby slept in the room with Hattie while it was going on. After all was said and done, no seizures were detected! Hattie: 1 , Seizure Activity: 0.
Hattie was dominating, but she still had one big hurdle in front of her... gaining weight. The goal was 10 lbs. by October 16th otherwise they were going to likely have to put a G-Tube in her stomach so she could directly receive nutrients. I was in LA for work and received the best text I've received in a while - Hattie was 11 lbs. and had grown in length to 23 inches. INCREDIBLE news. Hattie - 1 , G-Tube - 0.
Another piece of news that we are awaiting are results on the genetic testing that Abby and I had done. We decided to move forward with genetic testing on our blood to see if we are a carrier of a gene or chromosomal condition that may have caused Hattie's chromosomal deletion. Through prayer and consideration, we knew we had to find out to put our minds at ease about family planning down the road. Hopefully we will hear results in the next few weeks!
Our last exciting update was a call that we got from our geneticist. We were told that another family with a daughter, a few months older than Hattie, had been diagnosed with the exact same deletion. Her name is Lucy, and her family lives in Fort Collins.. what are the odds?! Out of 55 cases reported in the entire world, who would have thought that 2 families would end up in such close proximity? We ended up getting in touch with them, and meeting at our favorite spot for lunch, Chuy's--We were excited to show some Colorado natives some real Tex Mex. We bonded with them over the hurdles that both of our families are facing. We are so excited to have friends that know exactly what we are going through, and are excited to have them in our lives. More importantly, excited that Hattie will have Lucy as a friend--Someone that was born just like her.
-Abby & David