2025 - And We're Feelin' Alive

We started the year with a bang. Jovie was itching in her cast so badly. She was screaming each night, saying, "I can't stand this," from the nonstop itching. She hadn't slept in four days, so on January 3, 2025, I basically emailed the doctor asking if we could get the cast off and just be extra careful with her. It was torture, and she was miserable. Obviously, the doctor thought it was serious because she wrote back that the cast needed to come off that day. Since it was still the holiday break and there weren't many doctors or PAs back at work or available, we had to drive to Kennesaw to have her cast removed. She felt immediate relief even though her leg was covered in bumps. We thought she had an allergic reaction to a material used during casting, but it turned out she developed folliculitis from the intense antibiotics she was on for the bacterial infection. The lower part of her body was covered in a rash, even under her casing. We were advised at this visit to just take it easy and not do anything until we see her original doctor the next week. We got ice cream on the way home to celebrate her cast removal day!

We had her follow-up appointment with her doctor on January 8, 2025. Dr. Flanagan said the scars looked great and that Jovie could begin walking again with a walker. That was great news! The not-so-great news was that, because we had to remove the lengthening nail before the bone had hardened, she lost some length as the bone settled. The doctor predicted the loss to be about one-fourth of an inch. It was disappointing to hear, but we had no choice but to remove it because she had an infection and was in pain.

On January 10, 2025, the school closed for a snow day, and it snowed a lot for Georgia! The kids were so excited, and we were so happy for Jovie to have a "normal" day getting to sled and play in the snow without being wheelchair-bound.

As Jovie's luck (lately) would have it, the roads were too icy to have her 6th birthday party on January 11th, so we had to move the party to January 12th. She didn't seem too worried because all of the girls could still show up on the new date to celebrate her. She had a Pretty Pink Party Bus spa party. The girls got their nails painted, had facials, and walked the pink carpet!

At the end of January, we received an email from the teacher.

Good morning!

As we’re approaching February, I’ve noticed some ongoing inconsistencies in Jovie's reading skills. I was wondering if it would be okay with you for us to do some additional internal testing to get a clearer picture of Jovie's abilities.

Anna Pierce, who is part of our Student Support Services Team, would be able to administer the CTOPP (Comprehensive Test of Phonological Processing). This test assesses skills like phonemic awareness, phonological memory, and rapid naming. It’s a common assessment Anna uses with some of our students to help us gather more information about their reading abilities.

If this sounds good to you, I’ll coordinate with Sasha Mills, our Director of Student Support Services, to get this scheduled, and we can review the results together during conferences.

Please let me know if you have any questions, thank you!

--

Patty Yann

Kindergarten Teacher

We were immediately concerned because we had just received the conference report a few weeks earlier, and nothing had come up then. There was no mention of Jovie being behind or any other concerns regarding her learning, but the teacher said that her January assessments and work have shown inconsistencies. They were waiting on the reading assessments, but they wanted Jovie to complete the CTOPP, Comprehensive Test of Phonological Processing, to understand the inconsistencies better. They wanted to determine whether it was because she has missed a lot of school and has been through so much over the last few months, or if there was something more, such as dyslexia. They were just trying to ensure she is set up for success in first grade, so, of course, we did the testing.

We received the CTOPP results, but they didn't write a report because they said, "There's nothing to write." She performed at or above in all areas, so there was nothing further to do.

February 26th, she said, “I can’t do everything in PE. They do a race, and I can’t run. Last time I just walked by myself, and I was so lonely. A lot of people were cheating, and the only one who waited on me was Wesley. Not Kathryn or Avery, Wesley!” So I made sure to text Wesley's mom to tell her how sweet he was to Jovie.

Our school spring break was the first week of March, and we took a family trip to Jamaica. We stayed at a resort with a small water park, but the kids loved the lazy river the best. Jovie drank all the pina coladas she could ever ask for, and had ice cream for dessert every night. After seeing the movie Migration, they were so excited to see the "glowing water." It was so cool to see the water magically light up when we moved around. This was due to the bioluminescence.

Last minute I texted a friend that we were looking for Savannah Bananas tickets. They were playing in Atlanta, at Truist Park. Jen was able to find us awesome tickets on the 2nd row behind 3rd base, so we went to the game on March 30, 2025. One of the Bananas workers came over before the game started and asked us how old Jovie was. We told them she was six, and then they asked if she liked to dance. Jovie answered yes, and they asked Jovie if she wanted to help warm up the crowd before the game. We thought she would be with others, but she, alone, went out and led the warm-up dance in front of 40,000+ fans. It was such a special moment, especially seeing how she was just in a wheelchair a few months ago.

In April, we celebrated Easter quite a few times. She found the golden egg at the Easter egg hunt at school. They had another egg hunt at The Country Club of the South, and then the Easter Bunny came to our house and was really good to them and left a lot of gifts. The Easter Bunny left 50 surprise eggs in our backyard, and our kids had another egg hunt at the house in the morning.

Her class took a field trip to the Atlanta Zoo on April 24th, and I chaperoned since Jovie's legs still weren't as strong as the other kids. She wanted to walk a good bit, but I had her use the stroller to rest her legs if I could tell she was getting tired. She also refused to ride in the car with me and would only ride the bus with her friends. Jovie was assigned a zoo animal and had to make a poster board about it. She got the ostrich and was so excited when she got to see it at the zoo.

She had a follow-up with Dr. Flanagan on May 7, 2025. They took a new x-ray on a block to see how much she had gained.

The last day of school was on May 21, 2025. Jovie went to graduation to see her 8th-grade buddy graduate and take her a gift. Once school got out, we had a fun-filled summer. We started off with a beach trip to Hilton Head with Mema, Grandpa, and the Andersons. We went shark fishing, rode horses, fed the farm animals, played in the pool and ocean, built sandcastles, and rode bikes around the community. Jovie also continued tutoring with Mrs. Pierce twice a week during the summer since she was behind from all of the school she missed during her surgeries.

Jovie started horseback riding at Chastain Horse Park's Therapeutic Program in June. We heard about the program, but we weren't really sure what it was. We applied, had her doctor sign off on all the paperwork, and she was on the waiting list for a while. It was actually faster to get in through the therapeutic program than just everyday riding, since that is their mission.

She immediately fell in love with the horses and the overall program. They started her out wearing her big shoe, but she couldn't really feel anything, so they told her to wear normal shoes, and they would adjust the stirrup to her height. Gabby was her first horse. She was an Argentine Polo 15 Hands. One of the physical therapists came out to check on Jovie for a few weeks and realized that Jovie's saddle was too big for her. They took her to the tact room to find which saddle would fit her best. Then they took the saddle to see which horse it fit with best and they switched her horse out with Blossom, a Welsh Pony 13 Hands. The first time we met Blossom, her hair was braided!

Her amazing horse team was led by the best volunteers: Andrea (lead guide), and Lauren and Olivia as the horse walkers on each side of her. They loved Jovie! They were always laughing at whatever she's saying. She's so funny. They said they hit the jackpot with getting to be her volunteers.

We took both Jovie and River to see Dr. Sipp on June 17, 2025. They were both having constant nosebleeds. Jovie's weren't as severe and long as River's so the doctor only cauterized his that day, and sent Jovie home with some ointment to use for hers.

Jovie had her knee hardware removal on June 19, 2025. It was, by far, the most entertaining anesthesia wake-up. She claimed she was on a roller coaster, then proceeded to stick her hand out demanding, “Where’s my money?! Give me my money!!!” So I had Chandler put a dollar in her hand.

She did look at her leg, with the bandages, and said to me, “You lied to me! You said I’d be able to walk again.” I just explained that she could walk, and those were just the bandages. I kept telling Jovie that she could lift her leg, and she didn't believe me. Later that night, I put her on our bed, then heard her say, "Well, would you look at that?!" She had her leg lifted straight up in the air!

On July 1, 2025, I sent an email to Kelsey VanStee, Dr. Flanagan's nurse practitioner, and asked about Jovie being able to swim a few days before the full two weeks were up. She said that her wounds look great and she can go swimming, but recommended only swimming in salt water or chlorinated pools for now, and to continue to avoid rivers and lakes for a few more weeks.

Spent the first few weeks of school with a red, swollen eye rash. The teledoc and her dermatologist all thought it was just eczema. I sent the doctor a message after it was still there and getting worse after a month, asking if it could be ringworm. She said it was an easy test to bring her in. They scraped some of it off her eye and came back to the room after looking at it under the microscope. It turns out she got ringworm somewhere. It could have been from a pet, a horse, from the mats Acro, or just someone at camp. It took two rounds (four total weeks) of oral and topical fungal medication to get it clear.

Jovie was experiencing frequent nosebleeds at school that were taking her away from learning, so I took her back to the ENT, Dr. Sipp, on October 1, 2025, to have her nose cauterized.

We had her parent-teacher conference in October. We knew she was a little behind from being out so much last school year, but her teacher brought up other concerns. Jovie was in the lowest reading group, but was trying so hard with her reading. She was also asking the teacher to repeat the questions, or needing more help with directions. She was unsure if she was just nervous she wouldn't get it correct or she truly didn't understand what the teacher was asking. She was already still tutoring with Mrs. Pierce so, after that meeting, I called our prior Student Support Services Director to assess her. She said that Jovie did great on the CTOPP, was working with Anna Pierce, and is now going to the Reading Specialist at school, so she didn't think we needed to do anything further at this point. She said a psych-ed exam wouldn't tell us anything that we aren't working on anyway. Everyone seemed to think that her confidence was just not there from the school she missed, and her friends were all ahead of her, academically. She could have a little anxiety, and that's what's causing her to shut down.

Jovie ended up getting Flu A the week before Halloween. The unproductive dry cough was so bad, but she was able to hang on and make it several houses on Halloween. Then we went back to a friend's house, where she got in the hot tub. She took naps every day that weekend. It wiped her out, but at least she was able to celebrate Halloween this year after last year being in a wheelchair and in pain.

Around September, a text chain went around asking if any 1st graders would want to play on a co-ed basketball team. Jovie originally said yes, then changed her answer to no. We didn't sign her up. At the end of November, she started playing basketball with her daddy and brother in the driveway and said several times, "This is so fun." So, we asked our friend, who is the coach, if she could come to a practice to see if she actually really liked it, and on December 5th, she went and practiced basketball with the team. She was running, dribbling, passing, and having a good time at practice. Unfortunately, we didn't sign up in time, so she wasn't officially on the team, but she had a blast and held her own at practice. A week later, dad surprised her with her own jersey after contacting the program director and working hard to get her officially on the team with her friends. She was so excited!

She had to have her nose cauterized again on December 9th. The nurse tried to hold her head still, and I tried to keep her arms and hands down. She said, "Stop, that makes me more scared." We stopped, and she remained still while he cauterized her nose. She cried and said it hurt, but I was just proud that she was able to articulate her feelings so well.

Mr. Pierce, her reading tutor, emailed us in December to update us on her progress. She stated that they have been playing games and practicing phonological awareness. They work on the dictation of longer and longer sentences. She said she was very pleased with her progress, and after adding Ms. Muse's reading group four days a week, it really accelerated the growth. She also used DIBELS to monitor her progress. She scored quite well and was in the green or blue area of achievement in all measures.

Blue is the highest level, then green, then yellow, then red. Some measures don't actually have a blue level, so green is the top category.

Jovie saw her cardiologist, Meghann G. McKane, on December 12, 2025. They had Cookies and Carols at school, so she was still dressed in her Santa clothes, and all the nurses kept talking about how cute she was. She had an Electrocardiogram (EKG) and a Doppler Echocardiography, which is a test using an ultrasound and doppler (color pictures) to look at something that has been different since birth with how your heart pumps blood and how your heart valves work. It was confirmed that she still has a trivial to small restrictive Patent Ductus Arteriosus (PDA), L to R shunting, PG 113mmHg, and fenestrated pfo with small left-to-right atrial level shunting. The PDA is not causing any growth issues at this point, and it hasn't caused the left side of the heart to be enlarged. The hole is tiny, so we have a couple of options. We can go ahead and have the cath procedure to plug the hole and stop worrying about it, or we can wait and see if she starts having symptoms. There are risks with plugging (the plug could get loose) and risks with not plugging (more susceptible to endocarditis). Dr. McKane said she would not let us walk out of her office if there was any risk in waiting to decide whether to proceed with the cath procedure, so we decided to just keep an eye on her and check back in a year. She will need to have the hole closed at some point, but the plan is to check back in next December and maybe have the procedure during the summer of 2027. Since Dr. McKane doesn't want the procedure scheduled so close to any leg-lengthening or orthopedic surgeries, I emailed Dr. Flanagan to see whether she had a surgical plan for future orthopedic procedures. She replied, "Lengthenings are really done when she is struggling functionally.  She would certainly benefit from more length, but I wouldn’t do it until her femur is a bit longer and can get the exact nail that I want. Clearly the heart is more important, I do think her femur would be "long enough" to do a lengthening in the next few years, but I would recommend getting the PDA taken care of first."

I also emailed after her appointment to confirm what was going on with the ASD. The nurse replied: It looks like at her last office visit they were able to get better pictures of the "ASD" and have determined that it is actually a PFO. A PFO is a vessel that didn't close all the way after birth. This is typically not treated and dose not cause any problems.

That night, after her cardiologist appointment, she had her first basketball game. She had the best time and was actually really good at dribbling up and down the court.

Her annual dentist appointment was in December over Christmas Break. She has her first permanent tooth coming in behind her baby tooth, and if she doesn’t get it loose and out herself, the dentist will have to pull it.

Jovie and River must have been on Santa's nice list because they had a great Christmas this year. The cousins came to town, so we hung out a lot at Mema and Grandpa's house.

We went to Highlands, NC for NYE.