Our nightmare all began a few days prior to January 16, 2011. Isabella was barely 2 months old when she began having seizures. I took her to the pediatrician who told me she had reflux. The doctor prescribed her some medication for the reflux.... It wasn't reflux! On January 16, 2011 we had to rush Isabella to the ER at Ynhh! I remember the horrific ride to the hospital like it was yesterday. I held my baby in my arms helplessly watching her have seizure after seizure. Running in the ER I was in tears asking for someone to please help my baby. They took us right in and began giving her a "loading dose" of phenobarbital. It was a huge syringe on a machine that would go in slowly until it was empty. They then admitted us. The next day the testing began. MRI and EEG all types of blood work. Then came the neurologist to explain the results accompanied by a neurosurgeon.(who we didn't know at that time but he (neurosurgeon) would forever help to change our and Isabella's lives. I'll never forget how my world pretty much stopped when I heard the words "your daughter has a malformation on her brain" . I didn't really understand what that meant at the point but could tell by the doctors tone it wasn't good. We couldn't believe how could this have happened to our baby, why why Isabella? I began to think about everything that I could've possibly done during my pregnancy that could have caused this. Although the doctor said that happens in rare cases I couldn't help but wonder if it was my fault. The days to follow were so hard. We finally came home about a week later. Isabella continued to have seizures many of them every single day. She was on 6 meds at one time and nothing seemed to help. We didn't give up hoping that somehow the meds would start to work. We tried tons and tons of different meds some made it worse some we saw no change at all. We couldn't and wouldn't give up. After tons of meds and testing we realized Isabella was nothing but a science project to her doctor. All he ever spoke to us about was statistics and conferences he had gone to. First he had said it just happens then he had us all do tons of blood work. He at one point said she had rhet which is a very serious illness . Then he said it might be genetic, then it wasn't! That was the time that we realized it was time to switch doctors. We spoke with Dr. Diluna (neurosurgeon) and he told us we know what is causing Isabella's seizures lets focus on that. Which is what we did. He recommended us to a wonderful pediatric neurologist Dr. Susan Levy. Since the day we met her we felt like Isabella was now in good hands. She couldn't believe how many meds such a small child was on. She told us that she would've never put a little baby on that many meds. So from there we began weaning her off the few that certainly weren't making a difference. By the end of that time Isabella was on two meds and one as a rescue (only used when she really needed it) for a while this was ok. Then Isabella seemed to need the rescue more often so we would give her that one daily also. Although she was still having many seizures they weren't as long and as many as she had been having. Dr. Levy was and has been so good and genuinely cares about Isabella and has her best interests in mind. She suggested we begin the birth23 program. This was so wonderful for Isabella. Christin (pt)helped Isabella so much we saw her once a week. We completely trust her! Dr. Diluna had told us that at around 18 months or so Isabella should have brain surgery to remove the malformation (dysphasia) on her brain that was causing her seizures. Until that time came it was a rough road of trying yet more meds and diets that we knew most likely wouldn't work but couldn't help but try. We did the ketogenic diet which Isabella was admitted to the hospital for a few days. Our poor baby who once had eaten so well didn't want this diet. It was a powder that tasted very disgusting like a very sweet thick vanilla milk... Within the next few days Isabella began losing weight and she just didn't look healthy. So we called Dr. Levy and she said to take her off. We were able to give Isabella her normal food again. She was back to her happy healthy normal self. So from there on we just continued her meds. Nearing her 18 months we began doing testing for Isabella's surgery. It was so difficult to see her poked and prodded, test after test. (We didn't know yet but relief was in sight) we met with the surgical team on many occasions. They told us that the surgery would either stop Isabella's seizures immediately, she would have some then they would stop, or she wouldn't have any then she would but they would also stop. In the end Isabella would be seizure free!!!! They also went on to tell us that because Isabella was so young that she could move whatever info she had there to another area of her brain. This made us so overjoyed!! There was just one thing that had us very worried they said she would have a right side weakness and would have trouble doing things like tying her shoes and buttoning a shirt. This was very difficult to hear. I remember crying most of the way home from that visit. After realizing that Isabella being seizure free would be most important and great regardless of her weakness we were very happy. Although we were still very worried we went on with the surgery. That morning we arrived at the hospital very early. I remember holding Isabella crying and not wanting to let her go. I was so afraid. But Dr. Diluna came in and spoke with us and made me feel a little better. I'll never forget letting her go in the operating room with her favorite dog violet. It was her favorite toy and that was all that could go in there with her. The surgery lasted over 10 hours!! Dr. Diluna would come in and update us every hour or so. Finally the last update came in! The surgery was over and had been successful!! He said they were just prepping her to go to the picu. So we went up to see her. She was so little in that big bed with tubes everywhere. She was so swollen. But still so beautiful and perfect. That night I didn't sleep at all I pulled a chair up and rested my head on Isabella's bed. The nurses were in and out the whole night. The next morning Isabella woke up and she was SEIZURE FREE!!!! We couldn't believe what we were seeing! Within the next few days the tubes came off and she was moved to a normal room. We came home on June 5,2012! That was like the day Isabella was born. We would have to pretty much start from there! We continued with Christin and also started Daniela (ot) and Deneen (speech). Isabella had to get braces for both of her feet (afo and smo) and a brace for her right hand which became fisted after her surgery. Just as we were told Isabella pretty much had no strength in her right side. She regained use of her right leg and foot faster than her arm and hand. In January of 2013 Isabella took her first steps!!! It was the only thing I had wished for Christmas. It came true we were so excited. Although she was and still is wobbly she has come so far and accomplished so many things!
Isabella has now been weaned off her meds completely for a few months now and has shown so much improvement especially in her speech! She is now developing her vocabulary so well. We take her to therapy three times a week. Although her right hand still isn't working very well she has shown improvement by reaching for things with a somewhat open hand. With time and lots of practice I have faith that she will be able to use both of her hands. In September Isabella will be starting school. We are so nervous the thought of not being able to be with her all the time like I have since the day she was born worries me. There are just so many what ifs?? Like what if... She falls, chokes, gets made fun of. I just don't know what I will do. We have protected her and kept her safe and always praised her for any little accomplishment. We can only hope and pray that she will be excepted and continue to make us the proudest parents.
Isabella has not only shown us how precious and delicate life is but she is a true inspiration. We are so lucky to be her parents! We are and will forever be grateful to Dr. Levy, Dr. Diluna, Christin, Daniela, Deneen and all of the wonderful nursing staff at Yale that helped us get through this really difficult time in our lives. Our families were there with us through this whole journey! We are so grateful for everything they have done and continue to do for our little girl.
We are still struggling to get her seizures under control. So far we have seen some improvement but she is still having seizures. We are praying that one day she will be completely seizure free. We will never give up! Isabella is the most inspirational little girl we know. She never gives up. Things that we use two hands to do she has learned to do with only one hand.
A Special Thank you to..
Our parents and siblings-for being there for us from the beginning through this very difficult time in our lives.
Mrs. Denton- Isabellas