Kayleigh's Story

Kayleigh was born Oct 29, 2004. She weighed 7lb 8oz. Very healthy home birth.

She has 3 sisters Ellita (21), Jordan (16), and Keyana (14). I figured this was my last child so I stayed home with her. I held her all the time. It had been 13 yrs since I had had a child and you kind of forget at what age they reach their milestones.

At her 4 month well child check up her doctor noticed she wasn’t moving a great deal so she set us up with a Developmental Behavioral Pediatrics doctor.

They did an assessment on her and classified her as hypotonic with development of ½ month old. Further testing was needed and physical therapy started.

We went through MRI’s of brain, blood tests CAT scans. No one could give us an answer.

Kayleigh didn’t do well on trips to doctor apts. and would always start crying. So we started therapy at home with the Washington Elks therapy program for kids with Becky Gibson (OT).

On June 3, 2005 we had our first apt with a pediatric neurologist Dr. Al Mateen and he told us he thought it was Spinal Muscular Atrophy. We had no idea what that was or had ever heard of it. We figured ok, we can deal with this and asked him what we were looking at. His words were “ life expectancy is shorter than normal.” OK that wasn’t that bad. Normal is what 80 yrs so what 40 yrs old. Little did we know that it was an infantile death sentence.

We got home and I called our therapist. She knew another therapist who worked with a family who had a daughter with SMA. Sunday June 5, 2005 we met with them for lunch. The Mclays were so helpful and hopeful. We had cried all weekend with the thought that our daughter was dying.

They told us about a drug trial in California with this medication call Hydroxyurea with Dr. Ching Wang. Monday (June 6, 2005) I called and had Kayleigh enrolled pending final blood work results. It was the longest wait I’ve ever had.

I called everyday wanting results. I knew time was running out. The sooner we tried something the better chance we had.

June 15, 2005 we got the results confirmed that it was indeed Spinal Muscular Atrophy.

I had our therapist print me info on everything she could find. We were under the impression that she would just be in a wheelchair. Little did we know that they classified Kayleigh as a Type 1, the most severe form with death knocking at our door.

April 1st I got custody of my niece and nephew who where 3 and 4 when all this started.

The wheel chair started with our first trip to California on June 30 to enroll her.

WE NOW HAD SOME HOPE!!! And a lot of doctors apts. With all these specialists. Pulmonology GI, Neurologist, OT, PT, Sleep study, and swallow study.

We didn’t know how we were going to afford all this and still maintain a normal family life.

Sleep study went good, no problems. We started water therapy which was great. Kayleigh could actually move her legs in the water.

We also realized that the reason why Kayleigh didn’t do well in the car seat was because of her muscle weakness and she was having difficulty breathing.

So no more car seat. How scary is that to not be able to put your child in a car seat. Accepting that was pretty hard but she would stop breathing.

Then we went to the Genetics doctor who told us that it was a genetic defect that my husband and I passed on to her.

Oh my god this is our fault. Rationality tells you no but you can’t help but blame yourself. The guilt with that is enormous. You feel as though God is punishing your child for your mistakes in life. Once you get a grip on this you realize that it’s a blessing from GOD, A MIRACLE. So what if she’s different or won’t be here very long, we cherish every second we have with her.

My daughters were extremely amazing through all of this. It made them grow up real quick and learn to cherish what they have. They would take turns going to apts. with me, wanting to be right there with Kayleigh every step of the way. Jordan and Keyana put their lives aside to help their sister.

So many kids today are self absorbed and I can’t say mine weren’t before this, but that changed the day when we found out Kayleigh was sick. They take time off of school to help with our trips to California.

Kayleigh was having a hard time gaining weight so we had a swallow study done. We didn’t see the point since she was drinking her bottles and eating baby food. I did have concerns because she never increased the amount that she drank. Oct 13 we had the swallow study done and found out she micro aspirated. They put us in the hospital to place a NG tube in and do training.

That day was worse than the day we got the diagnosis. This was the day that it became a reality that something was really wrong. Everything else was just something you read about on paper. The next day we had a gastric emptying study which confirmed she also had GERD. Now we have an NJ tube and she is on continuous feedings. The doctors said she needs a GT and a fundoplication. We went home on Sunday to think about all of this. It was now sinking in that our lives were going to be different. We were home for 5 days when Kayleigh got sick with respiratory issues.

It was a long hospital stay with pneumonia and our first introduction to bipap. Boy, did I hate everybody at the hospital who was doing this to my little girl.

We spent Kayleigh’s 1st birthday in the hospital. It wasn’t much to celebrate at the time. She had her surgeries and was released from the hospital the day before Thanksgiving.

Every day is a struggle and will be a struggle to give Kayleigh the best life possible.

The first phase of the trial was a 6 month double blind phase with either the Hydroxyurea or the placebo. It took us 9 months to get to open label with pneumonia.

I feel the medicine is saving her life. We were told it was a very progressive disease. But the hopes with the drug is to halt the cells from dying off. So far it seems to be working. February’s hospital stay was 3 weeks, April’s was 2 weeks, May’s was 3 weeks and we almost lost her. She got sick in a matter of hours and was airlifted to Mary Bridge. We had a 2 hours drive. That was the first time Kayleigh and I had been separated. I had never left her side until then. By the time I got to the hospital and they let me in to see her, she was hanging on by a thin thread. IV’s and blood draws were very hard. We stopped counting pokes at 30 on her upper body. We had a port a cath put in to help with this. She actually was in respiratory failure many times with this hospital stay. We’ve had right upper lobe atelectasis, lung collapse.

We suction all the time and she is on bipap at night. In May all the doctors wanted to trach her because she has a critical airway due to muscle weakness and not being able to open her mouth very well.

Our fears with the trach at the time was quality of life and being vent dependent. She was just starting to talk and they couldn’t guarantee it. So we told them NO that we weren’t ready for it. We studied the disease and planned for the steps that we were going to go through and the trach wasn’t the next thing. We got better and went back to our base line.

Every day we do CPT with the vest to keep her lungs clear. Suction nonstop. Feedings by pump. Speech therapy along with sign language. Occupational therapy and physical therapy to help with home and muscles. Trips to California which are very expensive. Fund raising to help with that. But as her care gets more and more its gets harder and harder to do.

We have good family support and was approved for 8 hrs nursing a day.

Boy, was that a struggle to find good nursing. It was not as if Kayleigh wasn’t willing to let anyone help. She had major trust issues which was very understandable.

Summer was great for us, Kayleigh was getting stronger and starting to talk a lot more. We went to the zoo a couple of times. We don’t get out much because it takes to much time to prepare for trips, even to go shopping. Also Kayleigh doesn’t have a lot of reserve energy and gets tired so easily.

Through the summer Kayleigh started holding her head up for short periods of time.

In Sept she say up for 5 minutes all by herself. It was a MIRICLE. Dr. Wang actually said she was the strongest Type 1 he’s seen. She was talking more and more each day.

She is so smart too . She can count to ten in Spanish and 20 in English. Kayleigh knows her ABC’s, shapes, colors. Over 200 signs and can spell her name.

She loves to help with all her care. She can suction herself. She loves to press the syringe with her machines. Kayleigh knows about her cough assist, oxygen, bipap, food, port, lungs, and all.

Oct 29, 2006 we celebrated her 2nd birthday. Oh my gosh! We made it. It was a huge milestone and we did it. Kayleigh was so tired when the party was over.

It’s so hard shopping for her. I find myself getting depressed about it a lot. With clothes they have to be real thin because she gets hot real easy. Toys she can’t play with a lot of them a lot because she can’t lift them. There are so many things she can’t do. I wonder what she thinks about the world around her.

What does she think when she sees other kids running and sitting, eating and playing while she just lays there and watches. She seems to be a very happy girl but I always wonder. I would give my life just to make hers even a little better. For her to even have one day of being a typical 2 yr old. To be able to eat food, sit up, run and jump, throw a ball, play Barbies and dress them herself.

How can this be that any child should miss out on these simple things. It’s not fair.

Dec 21, 2006 Kayleigh got sick again and we took her to the hospital. I knew she was getting sick.

With Kayleigh she is either well or very sick. There is no in between for us. Dec 22 respiratory failure and a trach tube surgery because the airway is too risky. If she were to crash any where but the ICU she wouldn’t make it. They used every technique and trick to intubate and it took them 2 hours to do it.

The surgery went well. I think it was the right time for us. She wears her passy muir valve and can talk up a storm. She can breathe so much better now. The doctors said her airway was so small it was like breathing through a tube the size of an ink pen.

She is gaining weight really good now since we had the G-Tube put in. she is now 30lbs 4 oz. and 35 ½  inches long. She came out of the hospital on Jan 3, 2007.

She is so amazing in her determination and her will to live. She is happy and always laughing.

Keyana my daughter has saved her life many times when she gets plugs. Keyana’s 14yrs old and I trust her so much with Kayleigh.

Jordan is always excellent with her.

Mom and dad are great and I couldn’t do this with out my mom.

After the trach we got approved for 12 hrs a day of nursing and finally found some good nurses and Kayleigh is finally accepting them.

For as much sorrow as this has brought our family, it has brought us to hold the joy of having Kayleigh in our lives.

We have met some of the most amazing and wonderful people that care so much.

People in our society today seem to be so self absorbed in their own life. But when a child is ill their hearts open up and compassion comes out. People we don’t even know have reached out to help us with our trips. It’s a big financial burden. We’ve had our local paper run articles on Kayleigh. My husbands employer TMI Tubafor Manufacture Inc also did a pay roll deduct and they matched it.

We are very dedicated to the research study to help find a cure. It may not save Kayleigh’s life but hopefully it will help to save the life of a future child that struggles with SMA.

Feb 14, 2007 we went to the hospital again for 10 days. It was a lot easier with the trach and it made recovery faster with easier access to the lungs.

We are hoping to get to California again soon.

Each trip takes 3 days and it takes 3 adults to take all the machines with us to California.

The Alaska airlines and TSA know us pretty well now so going through security is getting easier. We have 3 more trips (6 months) and we will be done with the study but until the medicine is FDA approved we will always have to go to California to get the medicine.

Each trips costs anywhere from $700 - $1000 dollars. Our fundraising efforts are limited because Kayleigh’s care takes so much time now. We don’t know what we’re going to do when the money runs out.

If anybody has any suggestions about this, we could use all the help we can get.

We also struggle with transportation issues. We need a handicap van but can’t afford it. A van was donated to us but not in very good shape with the way to tie down her chair or ramps to load her. We have to lift her up by ourselves and my shoulder is now really messed up with a pulled muscle.

Aunt Donna helps out a lot. Aunt Sue is excellent about everything with fundraising and trips to California. Nana gives Kayleigh all baths and helps with everything else.

We all work together as a family and no one is selfish about it. There’s no time for it. Nobody gets left out and we all take care of each other. I think it’s the only way we can do it. We are so lucky to have that support.

There is never enough time in the day and it always feels like we didn’t get enough done but we try to look at the positive side about what we did get done.

I wish I had the time to tell you every moment of this beautiful baby’s life but I don’t. I’m to busy enjoying her.

Every time I get depressed about what we don’t have all I have to do is look in her beautiful face and thank GOD for the blessing that he gave her to us. And she is a miracle and we are the ones blessed to be able to be apart of her journey.

June 2006 decided we weren’t going to sit at home and took her to ride the Mt. Rainer Scenic railroad train. Jordan and Keyana went with me. We got up at 6:00 am to start getting ready. Train left 11:30, Kayleigh loves to go places. It was a fun day watching her facial expressions and making train sounds. By the time we got home she was exhausted and slept till the next day.

She loves motorcycles too. We have a couple quads and dirt bikes and we put her in a pack and give her a ride on them. She makes the motorcycle sounds and tells us to go fast. She doesn’t like to take turns very well.

July 5th 2006 we took her to Point Defiance zoo in Tacoma. Another long day. All the uncles and cousins went. Kayleigh loves animals so much and making the sounds. The whales were her favorite.

We are trying more and more to get her out of the house and not to let her disability keep us home. It’s hard to try and figure out things to do that she can be apart of. Most everything has to be stuff visually that she would enjoy. Any fun ideas for this would be great.

Like and dislikes:

She loves to watch Dora and Elmo movies, playing with her magnadoodle and Barbie’s. She has her own dvd and ipod (loves music.) Her favorite thing to do is to go in her sister Keyana’s room and listen to music as she loves spending time with all the girls.

Keyana is great about letting her be apart of that. It works to Kayleigh’s advantage because if she was a typical 2yrs old I think Keyana would always be telling her to go away but instead they are so close. They do play argue all the time. Kayleigh keeps up with her pretty well.

When Jordan is here she can’t get enough of her sister either. They never deny attention which makes the bond that they have even more special.

Both Jordan and Keyana have really good friends too who seem to understand our family.

We moved to Rochester in August and Keyana had to start a new school. I remember the first girl that came over to the house. When Keyana gets home from school the first thing she does is play with her sister to give me a break. When they got off the bus and Keyana did this they didn’t understand why she had to. To her it was all about hanging out together. Keyana told her friends this is what I want to do not have to do. They are no longer friends. It seems that one of the things they base friendships on is how well they respond to Kayleigh. Whether or not they have comparison and understanding.

The friends Jordan and Keyana pick will be life long friends for them. They are great girls.