Kaylee's Story

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!

What is a Developmental Disorder?

Once we scheduled this topic in our lineup, it became apparent that the five of us were unsure of the definition of a "developmental disorder." At this point, none of us have much, if any direct experience with developmental disorders or delays in our children. We'll hopefully have a few more guests posts this week from Mom's who've been there with their own children. Until then - I thought I would offer up some definitions and resources for those that are interested.

I learned so much from just about 20 minutes of quick research. (Actually, what I realized is that I should have remembered much of this from my psychology courses in high school and college! Oops!) It is such a broad topic, I really only skimmed the surface. Here is some of what I found.

First off, there is a difference between developmental disorders and developmental delays. I had a hard time finding a good, succinct description of the differences between the two. A disorder can be physical or psychological in nature and includes autism and aspergers syndrome. These disorders usually include delays in several areas including language, motor skills and social skills.

The term "delay" is usually used when only one or two developmental areas are significantly lagging. These include delays in fine and gross motor skills, speech or social skills. Delays can be caused by genetic factors (such as Down syndrome), prematurity, other complications during pregnancy and even chronic ear infections.

Most readers know that my son was born premature at 32 weeks. We battled major reflux for about 20 months! Now, I know reflux is not a developmental disorder, so where am I going with this? :)


About the time that Will was 10 months old (8 months if you adjust for his prematurity), we started giving him finger foods like "puffs" and cheerios. He would gag and rarely chew them. Sometimes the gagging would result in coughing which would lead to choking. My husband and I both performed the Heimlich several times before his first birthday. By the time he was 11 months - we took him to the doctor because he still could not eat finger foods without gagging. We learned that he had dysphagia. Basically, the word dysphagia means "difficulty swallowing." It can be caused by many things - but it our case, the reflux and prematurity were probably to blame. He went to a speech therapist for 3 months for "feeding therapy" in order to learn how to chew and swallow properly.

I had no idea how behind my son was in his eating skills. Now, I watch my 9 month old eat and I realize how behind he really was. She is already eating mostly finger foods or very chunky spoon fed dishes. We break her foods up in tiny pieces, only to have her gather up a fist full and shove it in her mouth with no problem!

I share this because we were clueless, first time parents. Thankfully, we had a doctor who listened to our concerns when we took him in at 11 months to say, "he can't eat cheerios." I have to add that I'm so thankful this minor bump in the road is the only real issue we've dealt with from Will's prematurity. Praise the Lord!

Here are some links that give good information on what to look for in your child's development. (Most don't include "can your child eat cheerios without choking?") These links are helpful, but do remember that all children develop differently. Always talk with your doctor about any concerns you have about your child. You are their best advocate and don't be afraid to ask questions!

University of Michigan

Babycenter Milestone Charts

March of Dimes baby milestones

AAP developmental stages


We would love to hear from any of you about your experiences regarding your child's development! Any other good resources that you know of regarding developmental delays and/or disorders?

Zoe's LIfe...Made for God's Glory

This week's topic, developmental disorders, is such a broad topic. We hope to have several guest authors to share their stories with you. Heather, a dear friend of mine (Stacey), is such a great mom with a beautiful family. I hope her story encourages you as much as it has me...

“You are made for God’s glory!” is a phrase we tell all four of our children often. We want to instill a sense of purpose as well as a sense of importance. The world looks at beautiful, perfect, and complete things as meaningful, and we can easily fall into that pattern. What about things which are imperfect or abnormal? Are they any less meaningful or purposeful to God? What about something He created that may be viewed as “abnormal?”

Our firstborn daughter, Zoe, was diagnosed with mild Cerebral Palsy at 2 years old, shortly after our second child was born. Around 9 months of age we began to notice that Zoe’s hands always mirrored one another. Our pediatrician (who has an autistic child) said that if this did not fade by 2 years of age, we would look into it. There was a possibility that it was just a minor developmental delay that would catch up. All of Zoe’s milestones were within the normal range, but on the late end. She didn’t crawl until 10 months or walk until 17 months. At 2, she could not put more than 2 words together. There were times when it was difficult (some times embarrassing, as if I could fix it but didn’t) for me that my child was not the same as other children her age. Right after her second birthday, we took her for an MRI, which showed minor damage in the left parietal lobe of the brain. A pediatric neurologist diagnosed her with mild CP with a rare expression of obligatory mirror movement in her hands, with some dynamic tone in her arms and legs. This explained the developmental delay we had seen and prepared us for a continuation of delays for the future.

I can remember that day well: the day that someone told me that my child was not normal. We jumped into “fix-it” mode by getting Zoe into therapy. Somewhere over the next year I went through a grieving stage while trying to imagine what life was going to be like for Zoe and for us. I carted my newborn to Zoe’s therapy sessions twice a week for Physical Therapy, Occupational Therapy, and Speech. We saw major improvement with her developmental skills in all areas over the next 2 years of continual therapy. During this time I remember wanting to pray for God to heal her, but not sure if I could. I didn’t know if I could handle the answer being, “no.” After mulling it over for a while I came to the belief that I first needed to have the faith that God could heal her. (Did I really believe He could?) I then had to have the faith that acknowledged that God alone had the right to make that decision. (Could I give over my control?) Thirdly, I had to have the faith that God would sustain me regardless of His decision. (If His answer was “no,” would I still praise Him?) So, I prayed (and still pray sometimes) that God would heal her. So far His answer is “no,” but that does not mean He is not working!

In God’s sovereignty, He called me to major in Special Education in college 9 years before Zoe’s birth. I met a fellow student with a sister, Shannon, with Down’s syndrome. Through interaction with her family, God gave me a passion to learn how to best assist children with disabilities. One thing about this family that caught my attention was the way they interacted with Shannon. Her brothers often introduced her as their sister with “super syndrome.” Their explanation was that Shannon had an additional 21st chromosome. To them, this meant that she was not lacking anything, but actually had something extra to make her special. I remember that when Zoe does something that is not “normal.”

Zoe is now almost 6 and I have been homeschooling her for a year and a half. We have learned how to focus on Zoe’s strengths, while still working on her weaknesses. She can’t tie her shoes or fix her own hair and has difficulty with some other self-help skills, but she knows the flags from over 50 states and countries. Her handwriting is atrocious, but she has learned how to read like a champ and has a memory that locks in information. Zoe is developing into a great big sister to her siblings (Karis, 4; Hudson, 2; Sophia, 5 months). We can’t look in the future and see what Zoe’s life is going to be like or what her capabilities will be, but we can continue to challenge her. Some days are more challenging than others (for example, Zoe broke her arm last week and now needs even more help than ever), but most days I simply see her as one of my kids. The most important thing for Zoe to know is that she is a gift from God, created by Him, to bring glory to Himself.