Life with Developmental Delays ...

This is a post that I have wanted to write for a long time but did not know how to approach it so I hope that I do it justice.

Having a child is a very exciting time, especially when it happens faster than you expect :o). When Clint and I decided to try to get pregnant for the first time we thought it would take some time before we would conceive but it happened on the first month. We were shocked and excited and beside ourselves that we would be blessed with a child. When Makayla was born we were overjoyed to have such a beautiful and good baby. She was a very mild mannered and sweet baby. After an uneventful pregnancy and delivery little did we know that our adventure was just starting.

At 12 weeks old Makayla got very sick and we spent a week in Primary Children's Hospital. She was diagnosed with a very rare disease called Kawasaki Disease. Her coronary artery of her heart was inflamed and the disease can cause aneurysm's. We were very blessed that the Pediatricians up at the hospital considered it from the beginning and watched her carefully. After an IV treatment in the hospital and a daily low dose of aspirin for 6 months cured her of the Kawasaki Disease and as far as we know we do not need to restrict her in activities. We are approaching 5 years since this experience and have a follow up with the Cardiologist this Friday. I will let you know how it goes I promise!

However, our medical adventure did not stop there ...

Between 12 - 18 months we were worried about Makayla because her gross motor skills were very behind. She did not want to stand up on her legs and her pediatrician referred us to a Neurologist at Primary Childrens. This visit sent us to an occupational therapist, pediatrician, and Opthamalogist. We learned alot about our little girl in a short time! With no medical reasoning she had low muscle tone which made it hard for her to stand up or put pressure on her legs. It must have been so painful for her because her tendons were stretched out and pulling. We also learned that she had Strabismus - a muscle alignment problem in her eyes - which was corrected with surgery. That same summer she was constantly getting ear infections and strep throat.So in 8 months she had 2 MRI's one of her brain and of her spine.

Had surgery on her eye, and got tubes in her ears, tonsils and adenoids taken out and had physical therapy and Speech Therapy every week. You could say our lives were a little crazy that year! She had a wonderful Physical therapist named Julie that helped her so much. Before she walked Makayla crawled faster than any baby I have seen ;o) She used a reverse walker to help her walk. She did not like using it and we had many tantrums and tears over it but in the end she started walking without it. That was a good day. One of the best things was seeing her walk instead of crawl out of her room in the morning.

Because of Makayla's Developmental Delays in her gross motor skills it delayed her speech as well. It has been hard to be a parent of a child with developmental delays because you feel like you did something wrong. Even though you know it really was nothing you did, you can't help it. It is also very disheartening to see younger kids doing more advanced things than your child. It took me a very long time to see that she was doing things at her pace and not what my wishes were. I had a wake up call in a waiting room of a doctors office. Makayla was crawling around playing and I would say to her that she needed to walk like the other kids. There was another family close by and I overheard the Mother say to her child (who had a developmental delay too) you need to crawl like this little girl. She is crawling so good you should crawl like her. It was like a slap to the face for me. While yes she was not walking like other kids her age, she was mobile. She could get around where she needed to go. And I never thought she would be inspirational to someone else.

Makayla walked at 2 1/2 years old. She is doing great things everyday still. But we are still working and struggling with communicating with her. She is trying so hard and I hate it when I cant understand her. But thanks to the wonderful Early Intervention program and the Special Education Preschool that she goes to she has improved leaps and bounds and is saying words more clearly every day. Our current adventure is with her ears. She has failed 2 hearing tests and they think that there is something going on in her middle ear. There is a middle range of tones she was unable to hear. We have an appointment scheduled with her ENT doctor at the end of February. So it looks like I will be spending some time at Primary Children's Hospital this year. I am so thankful for that hospital. I am glad it is close and full of great Doctors and staff. I just wish we did not have to know how great it is :o)

I am amazed and so proud of our little Makayla. She is my little angel and miracle and Clint and I do not know what we would do without her. We feel so bad that she has been through so much in her little life but our lives are complete with her in it.