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Isabella’s Story

Isabella is an exceptional 7 year old who will capture your heart the moment you meet her. She was born with multiple birth defects and medical conditions. After 6 years of trying to piece together the puzzle that is Isabella, she was diagnosed with Fanconi Anemia. It is a rare genetic disease that will cause her bone marrow to fail and will require her to have a bone marrow transplant. Additionally, FA patients like Bella are likely to develop blood cancers such as leukemia as well as solid tumor cancers at an exceptionally young age. Despite it all, Bella is an incredible little girl and her fighting spirit will show you that miracles really do exist!



Isabella Claire Griggs was born on April 21, 2004. She weighed just 4 lbs. Her medical diagnosis include esophageal atresia, PDA, ASD, and VSD heart defects, epilepsy, mild hearing loss bilaterally, Celiac disease, and severe oral aversion with g-tube dependence. She has endured 8 major surgeries, including open heart surgery, as well as multiple medical procedures. She has spent over 200 days in the hospital during her lifetime and she has over 20 scars on her tiny body to attest to her struggle.

Despite it all, Isabella is a dazzling, energetic, and feisty little girl. She has endured more pain, suffering, and surgery than most adults do in a lifetime. Because of her extensive health history, Isabella never learned how to eat, and received all nutrition through her g-tube for most of her life.

This CaringBridge website will be used to inform the many friends, both old and new, family, doctors, teachers, and other wonderful people about Isabella.

 

Latest Journal Update

Pre-school Tune Up

Bella and I spent most of our day yesterday at or in the vicinity of Children's Hospital as she had multiple appointments in what we will call a little 'tune up' before school starts in a couple of weeks. 

After spending the past few weeks watching Bella wretch and gag on nearly any amount of food that passes through her esophagus, we were concerned about a possible stricture of the esophagus. A stricture is excessive scar tissue which forms in the esophagus at the site where it was connected after she was born. In the past, stricture has caused her to aspirate and develop pneumonia. After expressing our recent concerns to her surgeon's nurse, an esophagram (radiologic exam of the esophagus using barium contrast) was ordered and that's where we started our day at 9am.

Bella was a champ and, despite some understandable resistance, she took several large swallows of that yucky, disgusting, chalky orange (seriously, why even bother flavoring it?) barium beverage. I watched the monitor as it slowly, but steadily crept down her esophagus which showed no signs of stricture. Unfortunately, the contrast made it painfully obvious that her swallowing is uncoordinated and, to be frank, looks crappy. Her muscles, as with many patients with esophageal atresia at birth, just never developed peristalsis. No surprises there. What was surprising is that her nissen (surgery where part of the stomach is wrapped around the top of the esophagus to prevent vomiting/reflux) was really, really tight - allowing only small amounts of barium to slowly pass through. The combination of poor muscle motility and a tight Nissen is what has led to the discomfort with swallowing. Thankfully, no surgery is necessary (or even possible) to remedy this problem. Bella just needs to work harder at chewing and swallowing and drink after each bite. 

I'm proud to say that despite overscheduling and even though the radiology nurses were very skeptical, we did make it to our 10am appointment on time. Now under normal circumstances, this wouldn't be so impressive however, radiology NEVER runs on time and the second appointment, was in a completely different clinic building. We had to drive to from the hospital in Wauwatosa to downtown Milwaukee for a dental appointment. Dr. Fischer is definitely worth the drive tonight as he has a good rapport with Bella and has taken the time to read anything on Fanconi Anemia that he can get his hands on. So at 10 o'clock on the dot we walked into the Dental office of the downtown CHW clinic building.

Bella got an official thumbs up from Dr. Fischer for her recent teeth brushing. Herr teeth were cleaned, a sealant applied to one tooth, and a thorough examination for any oral lesions or lumps was completed within reasonable time which means Bella was cooperative. All is good and we were assured that the tooth fairy should be visiting our home soon as two teeth were very loose. 

With a break in the action, we decided some retail therapy was necessary and headed over to Toys R Us where Bella quickly spent her remaining birthday money on a new set of Lego Friends and some accessories for her bike before promptly telling me she is now "totally broke." Then we stopped for lunch at Q'doba and hit the CHW pharmacy for some candy for dessert.

Just before our final appointment for the day, we stopped by the surgery clinic to see our favorite nurse, Lynn, and discuss the results of the esophagram. Although Dr. Oldham isn't in today, Lynn had already reviewed the test and agreed with my assumptions. Of course the doctor has to give his official agreement, but the results are pretty clear cut. Regardless, it was great to see Lynn again and catch up with her for a few moments, even if we weren't on the schedule. My apologies to those patients who had to wait a bit longer while Lynn chatted with us!

Our final appointment was with the Ear, Nose, and Throat specialist. It should come as no shock that Bella has yet another ear infection. I think it would be more shocking if she didn't have one as summer and frequent swimming seem to bring on ear infections regularly for Bella. We got a refill of her ear drops prescription and Dr. Robey suggested that we should look into ear plugs when Bella goes swimming. We will discuss this with her audiologist. 

Fortunately, these appointments are all she needs before school starts unless something else comes up in the mean time. That means we will hopefully be able to set aside Bella's medical issues and just enjoy the last few remaining days of SUMMER!