Angelina came into this world hearty and healthy in June of 2004. She was delivered via planned c-section at 39 weeks, weighed in at 8 lbs 13.75 ounces, and was 19.5 inches long. My anesthesiologist remarked, “You have given birth to a toddler!” Once they cut her cord and swaddled her, my husband was the first to hold her because of my spinal block, but he brought her to me and held her cheek to mine. Finally! My little girl was here. The little girl I had waited for all my life. She even had lots of black hair, as I knew she would. I could not wait for us to get home to her big brother Anthony. It felt like our family was complete.
 
The next day the pediatrician told me she detected a heart murmur, but was not overly concerned. This happens all the time and the murmur, usually caused by a pinhole-sized hole in the heart, closes up within the first year and never causes a problem. It was just a few minutes after this visit that the pediatrician returned to my room to tell me that Angelina had turned blue in the nursery. They were now very concerned about her heart and rushed her across the street to Kosair Children’s Hospital for testing.
 
After several hours, Angelina was brought back to my room and a pediatric cardiologist paid me a visit. Angelina seemed to be fine. There were four pinhole-sized holes in her heart, but again, this was not that unusual. We would follow up with the cardiologist at six months, then a year, then yearly after that. No big deal. I was not going to stress. We left the hospital thinking everything was perfect.
 
Looking back, I should have seen the signs. I hear this from so many parents with children who are stroke survivors. She was hitting her milestones much slower than her brother did, but hey, he was always ahead and I tried not to judge her. It never occurred to me that there was something wrong with her right foot not wanting to go into her shoes, or that it was especially difficult to dress her right side. I never thought anything about the fact that she did not try to hold her own bottle at six or seven months old.
 
We were with my Mom one night at a community event, when she remarked that something must be wrong with Angelina’s right hand. I blew it off. Maybe Lina was going to be left-handed. Besides, my Mother did not read all the baby books and child development magazines I read! I thought Mom was just old-fashioned and believed everyone had to be right-handed. Unfortunately, all the baby books I read never mentioned a child should not show hand preference until they are two or older.
 
After a week of nagging phone calls from my Mother, which worked me into a frenzy, I took Angelina to the doctor (not her usual pediatrician) to have her hand examined. His first question was, “Who did this to your child?” I was dumbfounded. It never occurred to me that someone had hurt her. I told him that she did start a new daycare a few weeks ago, but other than, that she had not been with anyone but she and I had not been injured to my knowledge. He obviously did not believe me and I soon became scared, “Who was abusing my baby!” After an X-ray showed that there was nothing wrong with her shoulder, arm or hand, the doctor said he felt sure her arm had been dislocated and he put it back into place. He rather muttered under his breath that if she did not start using that hand soon, we should see a neurologist. I do not think I even realized what a neurologist was at that point, and I certainly did not know what it had to do with her arm.

It took two more visits to the doctor to get someone to listen. At her 9-month check-up, Dr. B (her regular doctor) tried to coax Angelina into using her right hand to grasp a sucker, a pen, a balloon. Nothing happened. She would always reach across her body with her left hand. Dr. B. said, “I think she’s had a stroke.” I was in shock. So much shock, that I was not upset, just numb. Luckily, Dr. B has a personal friendship with our local pediatric neurologist and we got in to see him two days later. He agreed within about 60 seconds of that visit that a stroke had occurred. An MRI was done a few weeks later and confirmed a stroke in the left middle cerebral artery.
Our neurologist gave us a long list of possible outcomes, none of them particularly bright. She has surpassed many of his expectations, but others have come out about where he predicted. She walked much sooner than predicated, at 17 months, but language skills have been slow and difficult to develop for my little girl. She can use her right hand as an assist, but it is still weak - though much better than the day when we first took her to the neurologist.
We still do not know when or why Angelina suffered a stroke, but in my heart, I believe it happened when she turned blue in the nursery. Not knowing is something I just have to come to peace with. She has had blood tests, but nothing has come back conclusive.

Angelina received PT, OT, DT and ST in First Steps for a little over two years. I credit First Steps with teaching me to advocate for my child and helping me face what she needed for the best outcome possible. Leaving our First Steps family at age 3 began an entirely new kind of journey with Mom as case manager #1. Lina attends preschool at a public school and receives special education services including PT, OT and ST; however, she also has a PT and OT outside of school that she sees weekly. They really help to manage her tone and monitor her assistive technology, like DAFOs and benik splints for her hand. She receives botox injections every 6 - 12 months as needed to relieve spacticity, and we are about to go for our third round of Constraint Induced Movement Therapy. All of this is managed by her orthopedic surgeon. She is going to start e-stim therapy in the near future.
In November of 2008, Angelina began ABA therapy to address some behavioral concerns. ABA has brought Angelina out of her shell. When you have a special needs child who is involved in multiple therapies, you can never know for sure exactly what therapy is making the most impact, but I know that ABA has helped her decrease tantrums, increase her ability to focus and participate in non-preferred activities. Best of all, and unexpectedly, it has helped her language skills take off. She is talking in multi-word sentences and is beginning to ask simple questions including proverbial, “Why?”

She just told me tonight, “Mommy I lub (love) you so much!” As a Mom of a child with language delays, I immediately counted the words, one-two-three-…..six! Six words in that phrase! We are so proud of Angelina for her hard work and her accomplishments that seem to come daily. That is why this group is so important to me. I want to give back to the community that has supported us and brought us so far. The best way I think we can do this is to reach out to other families, especially those parents who have no idea what the future may hold for their child to let them know there is hope and help.