Tawny Alyn Larsen

When she was born she seemed to be ok just maybe a little more premature than previously thought. She wouldn't suck, she had low muscle tone and she was unusually sleepy. After several days in the NICU at our local hospital, with regular tube feedings Tawny seemed to be getting better, tolerating her feeds and gaining weight, we & the therapists at the hospital continued to work with her on learning how to suck form a bottle and she still had low tone and slept a lot, but it looked like we were going to get to bring our little girl home soon. At 11 days old she took a turn for the worse, she had a bloody stool and began whimpering all the time even when she slept. It seemed like no one had any idea what was wrong or how to make her better. She was in pain and it seemed that nothing could be done to help her. I couldn't help but cry when as I held her. On day 12 she was transferred to Lucille Packard Children's Hospital @ Stanford University. Watching our baby be loaded onto a stretcher and into an ambulance was more than we could take. They wouldn't let us ride with her we had to drive there ourselves.

Once as LPCH they immediately ran tests, started her on several antibiotics and IV's, took Ex-rays, ultrasounds, cultures you name it they did it to her. First they found Tawny's level of infection to be extremely high, normal for an infant is below 1 Tawny's level was 16. In about a week they had ruled out anything genetic but they had discovered a stricture in her colon, an area that was too small for anything to pass through. They scheduled surgery to remove the small section and they said that she would be fine after that. All of her problems would likely go away once she recovered from the surgery. We were terrified and thrilled at the same time, our baby girl was going to be fine, but she has to have a major surgery at such a young age. At 27 days old Tawny went into surgery. A few hours later the surgeons came out and looked at me and my husband and said "that's one tough little girl." Her problem all along was that she was born with appendicitis and her appendix had burst sometime between the time she was born and the time she was sent to LPCH. Poor baby, she went through that with no pain medication at all. The stricture that they saw was really the tissue that her body built to surround the infection to prevent it from traveling throughout the rest of her body. They removed the excess tissue and what was left of her appendix. Tawny recovered from the surgery very quickly and we were anxious to get her home finally. It was time for her to start sucking and perk up, but she didn't.

She was there for another 4 weeks making her total time in the hospital 8 weeks and 1 day before we got to bring her home. She was finally able to suck from a bottle which was the main condition of her release. When she was released they told us that she was a little behind like most preemies. She will need physical therapy and some extra time to meet milestones but she will be fine. We couldn't have been happier.

Today Tawny still has physical & occupational therapies and continues to have appointments and testing to get to the bottom of what's going on with her. She is currently 9 months old and cannot hold her head up, sit up, hold her own bottle or feed herself. She has little control over her gross motor skills and has no fine motor skill ability at this time. She has esotropia and nystagmus that affects both of her eyes and a slight aversion to touch. At her last neurology appointment we were told that she may not walk until she is 3-5 years old and may always be behind. It's too soon to be able to tell the extent of the damage to Tawny's brain and how it will affect her down the road. Although she is making great progress with therapy and working very hard, she is still behind for her age.

Tawny has been accepted as a candidate for a stem cell transplant (re-infusion of her cord blood) as part of an ongoing study of Cerebral Palsy at Duke University in North Carolina. We are hoping that this treatment will help her turn a corner and give her the boost that she needs to meet her milestones sooner than expected. Some of the children who have had this procedure have had amazing, life altering results. We are trying not to get our expectations up too high, but it's really hard not to.

Tawny is a wonderful little person to be around, happy and laughing all the time even when she's sick. As far as she's concerned she's just fine and we think she's perfect! We feel so lucky that her social skills are coming along so nicely. We love her more and more everyday as we get to see her personality develop. She has a beautiful spirit about her a light inside that comes right through her eyes.

Even if the benefits of this treatment aren't as profound as they have been for other children, we are so happy that we banked her cord blood because at least we have hope.

Thank you for your support, Bret & Dina Larsen.