BaiLee's Hope

ht. For the next two and half months our lives were turned upside down. BaiLee was in and out of the hospital two or three times a month for constipation and colon impactions. We went through what seemed like every formula on the market. Expensive, cheap, you name it we tried it. She was diagnosed with colic and we were told that we just had to deal with it. In December 2004, we had BaiLee in the ER at our local county hospital for like the umpteenth time for constipation and vomiting. The doctor finally said that he thought she had a colon disorder which was causing her constant constipation problems. He told us that they would run a scope, check the colon and if part of it wasn’t working right, they would go in and remove the section that doesn't work and it is no big deal. However, it was important enough that he could either fly her, and only one parent could go, or if we promised to leave town within the hour, he would let us drive her up there. Of course we chose to drive her so that we could both be with her. We left the ER, grabbed a change of clothes, and left town. BaiLee cried the entire way which seemed like an eternity. We had never been to Wichita so we had no idea where we were going, but lucky Greg's sister and her family was up there seeing some of her husband’s family. They met us right as we got into town and showed us how to get to the hospital there! I don't remember what time we got there but I know it was really late. This is where the worst week of our (my) life starts. As you may know, whenever an infant is taken to the doctor or to the hospital the first things done are weight, length, head circumference, etc. They did all that. Then another nurse came and measured BaiLee's head. Then another, and then the moment that started it all for us, a white coat came in. That is the moment we learned white coats meant business. Over the next several days, I watched doctors run blood tests, x-rays, CT scans, MRI's, sedated hearing tests, ua tests, and just about anything else you could think of on my precious baby girl. By the end of the week we had answers if that is what you want to call them. The pediatrician walked into BaiLee's room and said we have her tests results. "Your daughter has a disease called Congenital CMV which is a virus you gave to her in utero.” IT has caused her to be almost completely deaf in both ears, calcium deposits on her brain, and cerebral palsy. Everywhere there is a calcium deposit the brain tissue is dead. We will have to wait and see how severely she is effected as time goes by. We were discharged on December 23rd 2004. We were so thankful to get to be home with our family for Christmas. Over the next two years BaiLee had a cochlear implant put in her right ear and a feeding tube placed due to aspiration and failure to thrive. The cochlear implant was a failure for us, due to the fact that BaiLee lacks the mental capacity to understand what the noises she hears are. Information we weren’t given before the surgery. That one was a real disappointment because we were given all this hope that she would hear and it would change everything. That was not the case. It was heart breaking. I will say this however, the doctors say BaiLee can hardly hear anything, but if you see her responses to certain things, you would say the doctors were crazy. The feeding tube took a while to get use to but did its job. BaiLee began to SLOWLY grow! Our son Davin was born July 11, 2006. A healthy, happy little boy. Towards the end of 2006, I finally got the nerve to leave BaiLee (with her dad……I was always afraid if I left something would happen and I wouldn’t be there) and took Davin with me to OKC with my mom to see my brothers. The first night went great. The second afternoon we were there Greg called me in a panic. BaiLee started having what he thought were seizures. She would get stiff as a board, jerk her head to the side, and had a look of terror in her eyes. My mom rushed me back home and we went straight to the hospital where BaiLee and Greg were. She had had a seizure approximately every 30 minutes for over 6 hours. They ran several tests and scans and couldn’t tell where they were coming from. They put her on a high dose seizure medication and diagnosed her with Undiagnosed Seizure Disorder. Her seizures are very well controlled now unless she gets sick. The next two years where filled with ups and downs. BaiLee got sick very easily so we spent a lot of time in and out of the hospital with common colds she couldn’t fight off and upper respiratory infections, even the occasional constipation issues. We would travel to Denver Children’s once a year and see about 7 or 8 different doctors. February 2009 BaiLee had her first double hip surgery. It was the scariest thing we had done thus far. Both hips were dislocated because of her cerebral palsy. She was in a huge cast and a lot of pain. She did not respond well to the surgery at all. She vomited and cried for the next 9 days. She lost 6 pounds we had worked so hard to gain, and we were finally released on day 11. We spent the next several weeks recovering. After her cast finally came off she spent several weeks after that doing physical therapy. We were told that the surgery would have to be done every 4 to 6 years depending on her growth. The following year we started Botox injections in her hamstrings to try and keep her loose, but Kansas Medicaid decided it was to expensive to pay for lower extremity Botox and stopped paying for it. The following year we were back where she started with her hips. Both of them dislocated. We did it all over again in March 2011. This time her reaction wasn’t as bad, but she did receive a blood transfusion due to loss of blood in the OR. May of 2011 we made the biggest decision of our lives. We moved from Elkhart, KS to Portal, GA. It was scary and exciting all at the same time. Once we got here we got a place to rent and Greg found a job. That August we got both the kids set up in there new schools. Davin was so excited to start Kindergarten, and I was terrified to leave BaiLee at school ALL day with strangers. She didn’t attend school back home except 2 hours 3 days a week. A huge change for me! However, BaiLee LOVED it! She was the center of attention and she wouldn’t have it any other way! We finally got her set up with all her specialists in Augusta! WE LOVE THEM THERE!!!! BaiLee had a very bad case of pneumonia in February of 2012. We spent 4 days in the Statesboro hospital and then we were bussed to Savannah where we spent another week. That is the one and only time Bailee has been hospitalized due to sickness since we moved here! The doctors say that it is probably the change of climate that made such a difference. Since there was a lack of her being sick, BaiLee grew tons over the past 3 years! In October 2012 BaiLee went to school like any other day. About 2 hours later I got a phone call from the teacher saying that BaiLee was crying uncontrollably and they couldn’t figure out why. I called the doctor on my way to town to get her. He came out to the car and when he moved her left leg she screamed. He sent us for x-rays but said he couldn’t see anything and that the pictures weren’t the best. He sent us to Augusta a couple days later and we found out that BaiLee’s leg was broken right above her knee. Now don’t start playing the blame game. The doctor said since her leg had never healed from her previous hip surgery that the bones in that leg were very brittle. It could have been something as simple as a transfer or even changing her diaper. BaiLee was in a soft cast for the next 8 weeks. BaiLee had another hip surgery in January 2013 because the rod in her leg from her previous hip surgery had bent and the bone was not healed. A much different experience all together. She responded so much better. She did get a minor infection in her incision but the doctors and us responded quickly and got it under control. We have since moved to Statesboro and got connected with The Therapy Spot where she receives 30 minutes of physical therapy a week from an awesome therapist. Other than a few ear infections and a cold or two she has been great so far. We know there will be plenty more of ups and downs and scary moments, but there will also be MANY more happy and exciting moments in BaiLee’s Journey!