updated 4/2022 (as seen in the Spring 2022 Newsletter)
I can't remember the last time I wrote an article or update about my amazing girl...I also can't remember the last time she was in the hospital before now. It is Friday, March 20th, and she was admitted the evening of the 17th. Thankfully, hospital visits are less frequent the first few years of her life. We are here now because she has a stomach bug like the rest of the family, but couldn't get better on her own like we did. So...IV fluids (D10), Carbaglu, and "sick day" formula...
Nationwide Children's Hospital is an incredible place, with an amazing staff. Before I go on about Allison, I would like to thank some of the most special people in her life. "Daddy" Dave, who does EVERYTHING! Grandma Char, who cares for her and/or her twin brother Austin for countless hours whenever needed. Yvette Williams, her home nurse for over half her life, and full-time nurse at Nationwide Children's Hospital for 20 years this August! Dr. Bartholomew, Jimia Hoy, and everyone in the Genetics department, and all of the wonderful nurses on the 11th floor (many who have cared for Allison since she was a week old!) We love you all and couldn't do this without you!
Allison is currently in 3rd grade and is in a special needs class (another special person...Kelly Duell, intervention specialist who has taught her SO much, every year since kindergarten!) Despite her developmental delays, she is reading and writing many words, doing math on a calculator, and expressing herself more than ever! She wears DAFOs, receives physical, occupational and speech therapy weekly. She loves music (Frozen soundtrack, Laurie Berkner, and nursery rhymes, mostly), dancing, playing hide and seek, arts and crafts, swimming, and playing with her friend Gwen. There isn't much she doesn't like, all I can think of is storms, dogs (but she is getting better), and she isn't very interested in food. Primarily G-tube fed her special formula (which consists of Propimex 2, whole milk, MCT oil, water, and levocarnitine) she is only allowed 3-4 grams of protein a day by mouth. She will snack on her favorite..."white cookies" (mini vanilla Oreos introduced by Grandma Char), and occasionally have a little applesauce, juice, or taste of something (but when asked usually replies "no, I don't like that anymore").
Potty training has been one of our biggest challenges. We have tried lots of things including the potty watch, and just not using pull-ups, but underwear instead. Very messy! The combination of her diet, delays, and ulcerative colitis make it necessary for us to use chucks on her bed every night as well. I just paused and wandered off thinking about whether or not she gets teased or made fun of at school. I am back now because I don't want to think about that. I know I wasn't always a nice kid, especially when I thought someone wasn't "normal".
Our goal for Allison is to be as "normal" as possible. We would love to see her become independent, have a job she enjoys, and maybe even have a family of her own someday. Whatever she wants is our wish, and we have to help her discover what that is.
P.S. (Just for fun)...I used to joke that Allison's "Make-A-Wish" was to meet Mick Jagger and the Rolling Stones. I even got her to say it a few times 🙂 We haven't applied for anything like this for her, because we really aren't sure what she would pick. I just asked asked her what she most wanted, what she wished for...she answered "I wish for Allison". I just love her! I wish for a cure for Propionic Acidemia and will continue to do my part fundraising and supporting the wonderful PA Foundation.
I wish to meet Mick Jagger, so if anyone reading this has any connections...
Allison Lynne was born on November 29, 2005 in Columbus, Ohio. A healthy little girl, weighing in at 6’3 oz with her twin brother Austin at 5’10oz, the future looked bright. It was a healthy normal pregnancy. On Allison’s 1 week birthday, we got a phone call from the pediatrician’s office that said her newborn screening was abnormal. The few days prior, we did notice that she had been very sleepy and difficult to feed and we had a Dr. visit scheduled for later in the week. But, when we Dr. asked us to bring her in to get more blood work done as well as a urine sample, I was feeling nervous.
After the tests, they sent us home to await the results. On Wednesday, we called and told them that she wasn’t eating and they said to bring her into the office immediately, and once they saw her, they sent us to Children’s Hospital—this was Wednesday night. That night she had many firsts: including a spinal tap, IV, Oxygen, and was placed into a warmer and spent the night in the PICU. (Pediatric Intensive Care Unit). On Thursday December 8th, she was diagnosed with Propionic Acidemia. She spent her first week in the hospital and came home with a new diet of Propimex 1, Similac, Biotin, and L-carnitine. Allison did well until her next hospital stay 4 ½ months later in May. Her acid reflux was the reason for this visit. After receiving Prevacid and Reglan she was back home. She still was not eating really well and in October she got a feeding tube to assist her in getting all of her nutrients.
Later- her white blood count showed up low and after consulting with an immunologist, she was diagnosed with an IGG deficiency. She received infusions in August, September, and October. Her blood was checked in December and her IGG levels came up and consequently has not had an infusion since. Allison’s development has been supplemented with Physical and Occupational Therapy and focusing on her Gross Motor Development. Allison was saying a few words, clapping her hands, and getting very close to walking, when she developed a virus. This sent her back to the Emergency Room on Monday January 15th, 2007, with symptoms of vomiting and showing Ketones in her urine. After a day of testing, including a MRI, Spinal Tap, C-Scan, EEG, and Chest X-ray and another night in the ICU, she was diagnosed with a virus. They think a virus caused metabolic crisis (due to her Propionic Acidemia), and resulted in swelling of the brain. A neurologist said she had “chorea” which was “secondary to swelling of the basil ganglia.” Her EEG showed decreased brain activity and her MRI showed the swelling or “lesions” as the neurologist referred to them. She is home now, but not herself (not taking food or bottle, not sitting up, not holding toys, not talking…) They told us it could take weeks or months to tell if damage is permanent, but that the swelling and chorea should go away.