Kaylee's Story

Posted by  | Wednesday, December 10, 2008  at 8:40 AM  
Thank you to my cousin, Leah, for asking me to guest post on Prayer of Hannah. She is an amazing woman and mother. Definitely proud to share genes with her!

Leah asked me to share information about Kaylee, my beautiful four year-old daughter. Just to show you how beautiful she is, I added a little pic.

Here is Kaylee's story...

Brain Development We didn't learn that Kaylee had any major developmental delays until she was about seven months old. Her balance was not very good (while in a sitting position her head would bob from one side to the other). We took her to a neurologist who ordered an MRI. We learned a few days later that Kaylee's brain did not develop normally around week ten of my pregnancy. This was due to a genetic mutation.

Hearing Loss We also learned that Kaylee had severe to profound hearing loss in both ears. All of this news was difficult and unexpected. My husband Cory and I never thought we would be dealing with anything like we were experiencing.

Kaylee was tested for a cochlear implant; however, those tests revealed that Kaylee was hearing more than when first diagnosed. This was an answer to prayer in a very real way. So many people have faithfully prayed for Kaylee, specifically that she might one day be able to hear. It was awesome to get a YES. It was also very humbling. Seeing God work in the life of a child in such a real way...and for it to be our child. Blessed, truly blessed.

Hemangioma Around one month of age we also noticed a small mark on Kaylee's lip. We later discovered that she had a hemangioma. This hemangioma continued to grow until September 2007. At that time she underwent plastic surgery to have it debulked. Her lip now has a more natural curve and it is easier for her to do things like eat, drink, and speak. Here she is right before going into surgery. I think her nurse gave her twenty stickers that morning, and I think she wore all of them at once!

Heart Murmur Kaylee's doctors determined that she had two small holes in her heart at birth, an ASD and VSD. Both of these little holes are still present. As long as she continues to grow and remain healthy, they will just continue to monitor them.

Therapy Kaylee immediately started physical therapy, occupational therapy and speech therapy. Praise to God that we live in a state that offered all these services in our home for a nominal fee. All of her therapists have been amazing and truly care about Kaylee's continued development.

She is no longer eligible for these in-home services. At age three the local school system handles special needs children. Last year attended the special needs class of the local elementary school. This year she was mainstreamed into a preschool class that meets at a local church. She is making amazing progress.

Kaylee gets additional physical and occupational therapy from two wonderful ladies, Deb and Jolene. She is making amazing strides. One of these days she is going to walk right out of her walker and never look back! She is already using crutches at therapy instead of the walker.

Support Cory and I have an excellent support system. It all starts with Christ. He and He alone is in control of Kaylee's outcomes. That brings great comfort.

Our family is also incredibly supportive. Kaylee stays with her Great-Grandma Jerri while Daddy and Mommy work. She has been such a blessing. Taking Kaylee to preschool, therapy, and working on Kaylee's home program, but most of all for providing a loving environment for her everyday. I should also mention that she is a wonderful cook too. I think Kaylee sometimes holds out on eating the supper I prepared. She knows breakfast at Grandma's will be much better!

Kaylee's grandparents, aunts, uncles and cousins are also fantastic. I know that they love Kaylee and faithfully pray for her continued progress.

Our church family is also very supportive. We are blessed to go to a small community church. It was my church as a little girl and now it is Kaylee's church too. They are simply an extension of our biological family. Always providing love, prayer and support.

Daily Life Since Kaylee is our first and only child we have never known life with a child to be any different. It takes us longer to grocery shop, eat at a restaurant and get ready for school than most families. We wouldn't have it any other way though. Kaylee blesses our lives in multiple ways. She might be six years old or sixty years old before she takes her first steps unassisted, but hearing her little voice say 'I love you' makes it all worthwhile.

All children are truly a blessing, those with developmental delays are just an extra blessing. I hope this is what Leah had in mind when she asked me to guest post. If you have any questions, please feel free to send me an e-mail at angelakmorris gmail com.

Have a blessed Christmas,

Angie

UPDATE

After I posted this entry I came home to find Kaylee had taken six steps in therapy today! She took four more for me in front of the camera. Praise God, another answered prayer!

7 comments:

Carol said...

Kaylee is truly one of the most special little girls I have ever known. Thank you Angie for sharing your story. What an example of God working in our lives every day. He truly is good, all the time! We love you all.

Christina said...

Thanks for sharing, Angie! What a sweet little girl!

Krista said...

I found my eyes welling with tears. What a beautiful daughter you have and a sweet story. Thank you for sharing!

Teesa and Bill said...

What a blessing to hear about Kaylee's progress and how she has affected your lives. I am encouraged with my own son. He does not have any obvious physical issues, but has a heart condition that keeps me hopping. I have to do so many things differently just to keep him healthy and to protect his defibrillator. It's encouraging for me to hear your story!

Steph said...

Angie - thanks so much for your encouragement!!! It is truly a blessing to hear stories like Kaylee giving glory to God. My daughter has a similar story (developmental delay, hearing loss, and dandy walker variant). We thank God every day for her and the blessing she is to our family. Though the road may be difficult, we KNOW with confidence it was the road marked out for us by Christ. Thanks again for your encouragement!

KC said...

I would like to ask the POH authors/readers to please pray for my 6 week old son. He has developed an inefficient suck pattern and doesn't nurse well. We are having him evaluated for possible breathing/swallowing problems and reflux. I know that God has the ability to work these things out and I am asking that you pray that He will do so. No matter the outcome, I know God is sovereign and I trust Him!

Even still, my heart is heavy with thoughts of not being able to continue to nurse him if he doesn't improve or of him having serious breathing/swallowing problems. Please also pray for me and my husband to deal with God's decision.

Izabell said...

my daughter has phace syndrome
posterior fossa
hemangioma
arterial defects
cardiac defects
eye problems

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