Updated February 22, 2003

My, how the time has flown! It has been nearly a year since I have updated this section of the website! So much has happened the last year, it has truly been a whirlwind. Haley is 4 years old now! Where did my baby go? She is 27 pounds and almost 36 inches now! I feel like I have witnessed the progression of a miracle for the last 4 years of my life. The Bug will always be a miracle to me, one that I get to watch flourish from a tiny, sick micropreemie and a child fighting leukemia, into a beautiful young woman. I often wonder what God has in store for Haley, and I find I can hardly wait to see the things she will accomplish in her life. Haley has already been through and conquered so much in her short life, I can't imagine what the years to come will bring. She has taught me so much about life, sometimes it is very overwhelming. To try to explain what this child means to me would be impossible. She is my life, my breath, my everything. She keeps me going when it seems like I can't go on anymore. She has taught me that no matter what, you just smile and keep going. She has more courage and strength than anyone I have ever met.

She is doing wonderfully. She is almost a year into her chemotherapy which will last about 2 1/2 years. It is hard to believe April 3 will be a year since we found out she had Leukemia. She struggled in the beginning, and that made the time seem to go by in slow motion, but since mid-summer, she has done so beautifully with her treatment, the time has just been whizzing away! She goes to the Pediatric Hematology/Oncology clinc every other week for blood counts and physical exam by her Oncologist, Dr. Cecalupo, more affectionately known as, Dr. C! She loves to go the the hospital, and actually cries to leave amazingly enough! She has a central line inserted inside her chest called a Med-A-Port. The nurses can then draw blood through her port instead of having to stick her veins all the time to get blood and give intravenous chemo. I put a numbing cream on an hour before we go so it doesn't hurt Haley to get it done. Mr. Chris, the Child Life Specialist, always comes in and plays with Haley while she gets her port accessed, so Haley is oblivious to the whole process anyhow! She loves to play with Mr. Chris!

Haley is extremely intelligent. She scored at a nearly 5 year old level with her vocabulary! She is very artistic and loves to draw, especially faces right now. She loves to do any craft - painting, glueing, chalk - you name it! She likes to play games on the computer, and is getting really good at it too! Nickjr.com is one of her favorites. She is really into Oswald, Dora the Explorer and Blue's Clues. Haley also loves reading books. She has a Leap Pad Pro reading system and plays with it a lot. We are still working on learning letter sounds, but she knows all of her letters and is learning to write them. She can write her name all by herself, so I am very proud of that! She knows all of her numbers and can count to 20. We are working on getting past there. She doesn't seem to get how easy it is past twenty! She knows so many things that are beyond her age of comprehension - it is really amazing considering her early birth! I am so proud of her and how far she has come. She is an absolutely delightful child in spite of everything she has been through. She keeps us constantly amused; she has quite the little personality. I always find myself laughing at something she did or said. I am so proud of her.

As well as Haley is doing after being born so premature, she does have her problems. In January of 2001, she was diagnosed with mild Cerebral Palsy, or CP. She has right sided, spastic (tightening) hemiplegia, which just basically means for the most part it only affects her right side, most specifically her right leg. She can use her right arm for things, but she prefers her left because she has weak muscles in her right arm. This year she began having some spasticity in her left side as well. To look at Haley, you would never know she has CP. She wore an AFO on her right foot for 6 months, but now she only has to wear a brace at night and we do stretches every day to help stretch her heel chord and Achilles tendon and she sees a physical therapist once a week for stretching and strengthening. She can do most things, but has some trouble with very physical activities. She is mildly delayed in fine motor skills and is moderately delayed in gross motor. She tires out easily, in part due to her CP and weak muscles, in part due to being on chemotherapy. She cannot run fast - it is more like a fast walk. She cannot yet jump with both feet at the same time. She is working very hard at learning to jump right now, and I think a up and down jump may be coming very soon. However, I think jumping forward will be a very tough thing for her to learn to do. She can climb very well now though, and can walk up and down small steps without holding onto anyone. She can now play at the park by herself, so that is a huge accomplishment! She has an unnatural gait which causes her to be a little clumsy, and she always seems to be getting knocked down when she plays anywhere with a lot of kids. She is a tough kiddo though, and she still plays! It is hard sometimes to watch her around all those other "normal" kids. I wish things didn't have to be such a struggle for Haley sometimes. But, she is who she is, and it has made her the beautiful child she is today, so I guess I can't complain. It is hard as a mother to watch your child struggle though. She is learning how to do new things every day though, so I know she has it in her to be a star athlete one day if she puts her mind to it! She has great shooting style for basketball, and she can hit a baseball like nobody's business, so who knows!

I have found that there is a lot of frustration that comes along with a mild CP diagnosis that is different than the frustration of moderate or severe CP. I feel like people don't take her problems seriously when I see things that concern me. People always say, "Oh she looks fine to me," or "She will outgrow it," or "That probably won't even affect her when she is older." The problems that Haley have from her CP are problems that will be with her for the rest of her life. Even if the affects are mild, they are still there. It is hard to be an advocate for your child to reach her full potential when people don't take you very serious. They watch her and don't see the mild problems that I can't help but notice on a day-to-day basis watching my child struggle to do things that come naturally to other kids her age and younger. I am very thankful for the fact that it is mild though, and I do count my blessings every day for how fabulous she is doing! It is completely above and beyond what was expected of her when she was born 4 years ago, a tiny sick micropreemie with only a 50% chance to even survive!

She also wears glasses for near-sightedness and has an astigmatism in her right eye. Her prescription is -10.0 and -7.75. At first I hated the idea of her having to wear glasses, but she looks so stinkin cute in her glasses that now I think she looks cuter with them on then off! She got them when she was 12 months old. It took her over a year to finally keep them on her face and realize they help her, but now she wants them on as soon as she gets up and on until she falls asleep!

I thank God every day for choosing me to have this precious little girl! I don't know why I deserve her, but I am so glad she is in my life. It has not been an easy road, but I would not have chosen a different one. They say in life we take the bitter with the sweet - well, I know I have way more sweet! When times get tough, and they do, I have to remind myself of what a miracle my little girl is! I can't thank God enough for the many blessings he has bestowed upon our family!