Part 3: 9 – 12 months, Learning to Trust Myself and How to Advocate for Kai

Once we returned home from the hospital I began my extensive internet searching. I researched hypotonia every place I could think of. I joined yahoo and Facebook groups for parents of children with hypotonia. I learned that hypotonia is not a diagnosis at all, but a symptom. I was encouraged by some of what I found. After reading so many different stories it was hard to predict where Kai would fit in but I had come to the assumption that Kai would crawl and walk one day. I figured he might crawl after his 2^nd birthday and walk around 5 years old. These were my goals for Kai. Kai was going to crawl and walk. I was sure of it. He was just going to be farther behind the curve than most kids.

We began weekly therapy visits and I worked with Kai every day I could. Kai’s occupational therapist was fantastic! She was so creative and a great teacher. Many of the posts on this blog were her ideas. Kai would get mad at her sometimes for putting him in a position he didn’t want to be in. She would hand him to me so that I could hold him and give him a break. She was very aware of how he felt and if he absolutely didn’t like something, he didn’t have to do it.

I had a full time schedule at the local community college and worked full time in the midst of this. Fortunately for us, Kai’s daycare and grandparents were doing a great job helping Kai as well. I taught them what we were working on in his therapy, and they took it from there. The same applied to feeding. I showed everyone how to make his formula, how to feed him and what amounts to make sure he drank. They were all on top of it. It was great to have such good help while I couldn’t be there.

At this point, Kai was drinking all of the thickened bottles he was supposed to and eating purees. I saw a drastic change when we switched him to thickened formula. For the first time in months, Kai sounded clear. He made no sound when he breathed. It was great to know that he was actually getting some nutrition and he had noticeably more energy. He was kicking his legs and would attempt to bring his head up a lot more often. He also started vocalizing more, even saying Ma sometimes. We were able to put him in his high chair with the seat reclined a bit for play time and we were giving him lots of belly time. He could raise his head for moments off of the floor and could bring some objects to his mouth if his arms were supported.

A few weeks after we got home from the hospital, Kai started to make more noise while breathing again. I started to become concerned. I also noticed that his eyes shook. If I were holding Kai and rocked him side to side his eyes would dart back and forth.

We were home for about 5 weeks before our next set of clinic appointments. I had to drive 2 and a half hours to get to the Children’s Hospital so it was always a day trip for his appointments. This time we actually had two days’ worth of appointments, so we stayed in a hotel room for a night. On the first day Kai met with the neurology department. I showed the doctor his shaky eye movements and they decided to schedule Kai an ophthalmology appointment with our next round of appointments. During the neurology clinic visit I was very disappointed with the attitude of the doctor. The entire visit she seemed negative to me. She discussed the likelyhood of not finding a diagnosis for Kai throughout the entire visit. I figure it’s probably a good idea to be realistic and let parents know what they could be looking at - but say it once and then move on... She hadn’t even ordered a single test yet… I left that appointment feeling like we were getting nowhere with that department. She did order blood tests for various conditions and banked Kai’s DNA. Basically, they took extra blood from his blood draw to put away and save. They would use it if they thought of additional tests they would like to run without having to poke Kai again and again.

The next day we had a follow up appointment with the neurodevelopmental clinic with his main neurologist, Dr. C. I was so happy to see him and told him I was worried about Kai. I let him know about the change in his breath sounds and the shaky eye movements I had noticed. The doctor was not very impressed with Kai’s weight gain over the previous month. Kai was now 10 months old and still below the 5^th percentile. So Kai was readmitted to the hospital for failure to thrive and more testing. All of the previous testing came back normal so we were about to move onto round two.

The next few days were spent in the hospital working on feeding. The feeding therapist met with us every day and made some changes to how I fed Kai purees. I started to help him pull the food off of the spoon by pulling up on his chin to close his mouth and then pulling the spoon out. The therapist felt he was moving food around in his mouth fine and tolerating the thickened formula well. I told her I thought he was aspirating. He sounded so clear in the beginning, but then things changed.  The feeding therapist didn’t feel it was an issue. After four days we were sent home with the same feeding plan as before. Kai had gained enough weight during this hospital stay to be discharged and off we went.

Our time at home was short lived once again. Kai’s breathing was getting worse and worse each day and after about a week, I took him to the local hospital. I was uncomfortable taking him to that hospital due to our past experiences there, but his primary doctor promised me he would take care of him while he was there. After admission, there was a mix-up and no one from the hospital informed Kai’s doctor’s office about the admission. Kai was taken care of by the pediatricians from the hospital for the first couple of days. They diagnosed Kai with pneumonia. They would not let me feed Kai and started him on antibiotics. I was getting very upset. They wanted to put a feeding tube in through Kai’s nose (NG tube) but couldn’t find the right tube. I had been working so hard during the previous weeks trying to help Kai gain precious weight. It was not easy, and he lost over a pound in just one day at that hospital. Late in the evening on the second day they finally put an NG tube in and started feeding Kai.

The next day Kai's primary care doctor, Dr. B, finally came in. I was so upset that he hadn’t been around like he promised. That’s when he informed me of the mix-up and he apologized. By this time I just wanted to take Kai and go back to the Children’s Hospital in Seattle, but all the doctors wanted to take care of him where he was. Kai continued to get worse. This went on for almost a week and the entire time I was calling Dr. C at Children's daily with updates on everything they were doing. Finally he called over and spoke to the doctors taking care of Kai. After their phone conversation the doctor came into Kai’s room to let me know they were transferring him to Children’s. I was so relieved! Kai and I got into an ambulance and headed out.

Once at Children’s I felt so much better. Dr. C met us in the ER room when we arrived. He said he thought he scared the other doctors at our local hospital. He said he gave them ideas on tests to run or antibiotics to use and instead they just transferred him. I think the doctors felt like they were getting into something they didn’t think they could or wanted to handle. Whatever the reason, I was just happy they sent us away rather than taking his advice and trying things out there.

While at Children’s, Kai tested positive for RSV. He was treated with IV antibiotics, CPT(chest percussion therapy), suctioning and required some oxygen. During our stay, they taught me how to place his NG tube and use the feeding pumps. They also taught me how to handle bolus feeds. Kai was getting continuous feeds while asleep at night and 4 bolus feeds that were at an increased rate during the day. This way he was able to take breaks during the daytime. He was still approved for purees, but was to have no liquids except through the NG tube. They felt his pneumonia was caused by aspiration. This trip, like the others, was only 4 days long. It was amazing how much improvement Kai had in just those short days. 

Once we got home this time around, things began to pick up. We still had therapy sessions, but they were increased to twice a week. We also had to meet with a dietician to make sure his feeding went well. In addition, we started meeting with an educator weekly the day after discharge. I was taking any and every bit of advice I could get my hands on. I kept asking the therapy center for help playing with Kai. That’s where the educator came in. We only met with the educator twice. I felt that Kai was too young at this point and cancelled the service until he was older. Kai was also on a waiting list to begin speech therapy which I was really excited about. By this time I had already quit working. I continued going to school, but could not manage Kai’s care well enough doing both.

After a week of feeding Kai the bolus feeds I became concerned. His breath sounds were loud again and I actually saw formula in the back of his mouth on a couple of occasions. He would never spit up but something was wrong. I could feel it. I called his dietician and told her about my concerns.  She switched him to 24 hour feeds. This way his feeding rate would be decreased and we would have a better chance of his belly handling the smaller amount.

Kai was doing great in other aspects. He was saying “Ma” more and more and chatting it up. His occupational therapy was a bit of a struggle. Every time he was admitted to the hospital, it would set him back. We were doing the best we could though and so was Kai. He was really good at pulling his NG out. For a baby who didn’t grab toys or anything very much he sure could grab that little tube and pull it right out of his nose. I was very skilled at replacing it.

Kai continued to have gurgling sounds with breathing. After almost three weeks at home his breathing became labored. Instead of taking him to the local hospital, this time I decided to drive him over to Children’s myself. Once we got there, he was admitted for upper airway congestion and respiratory distress. Unfortunately, it was looking as though Kai would be spending his first birthday in the hospital.

Pillow Pets

Pillow Pets are awesome... Aside from being really cute, they are incredibly soft - which is what Kai always loved. Of course when I saw these in the store I wanted to try one out for Kai. I chose the Bee because of the long antennas. I was hoping that they would help Kai be able to play with the pillow. It worked great. Since Kai's hands were fisted, I could wrap his fingers around the antennas with the pillow sitting on top of his chest and he could hold on and move the bee from side to side. Added bonus... the ball at the end of the antenna kept his hands from sliding off!

The only problem with the bee pillow was that it was a little too big and heavy for Kai to move around more than just side to side while on his back. A few months later I saw that they came out with smaller pillow pets. I think these would be light enough for Kai to really move around. I did notice that the antennas are a little shorter than on the full size pillows. They may have been long enough for Kai's little hands to hold on to, but I assume he would have outgrown them pretty quickly as he grew. Unfortunately I wasn't able to try the smaller ones out, but I would recommend other parents do. Kai received other pillow pets as gifts but was unable to play with them because there just wasn't anywhere for him to hold onto, although he did get to lay on them and loved the soft feel... There are a few other pillow pets that have the same type of antennas that the bee had to choose from, like the lady bug and the butterfly.

Example spreadsheets used for in-home nursing

When Kai qualified for in-home nursing care I was so excited. It was such a relief to finally have the help we needed. Kai received 16 hours of nursing care, and the other 8 were up to us. This created quite a mess when figuring out who was going to take care of what. To help bridge the gaps, I created spreadsheets the nurses and I could use to track Kai's care. The nurses completed daily charts through the nursing agency but I was not allowed to use them for my shift. Also, their charts didn't include any details on his therapies or equipment cleaning. On a few occasions I found that things weren't getting done because one shift nurse thought another one was doing it. I also found myself repeating work because I didn't know whether it had been done or not.

I was planning on returning to work, so I needed a tool to help keep track of what needed to be done when and also to help all of Kai's caregivers communicate with each other. I needed a system that would allow me to take a quick look back and see how Kai was doing while I was gone. By creating my own charts, I could accomplish just that.

I tried to keep it as simple as I could for the nurses, keeping in mind that they would be double charting. Unfortunately, I can't attach documents onto my posts so I am attaching pictures of them instead.

Anyone can personalize these forms so that they work for you. They are easy to create on your own as well.


Daily Schedule

 The form I found most helpful was Kai's daily Schedule.

I shaded in the hours that each task, listed on the left, should be done. I asked that the nurses and I initial in the shaded box when the task was completed or annotate a measurement if necessary (for example; oxygen level, secretion description, heart rate, etc). My chart had the following tasks listed on the left:

• Secretion description
• # of wet diapers per shift
• # of poopy diapers per shift
• position change (please indicate R(right side), L(left side) or B(back)
• Temperature
• Heart Rate
• Respiratory Rate
• O2 sat
• sat probe change
• hold feeds
• change feed bags
• flush J-tube 10ml
• oral care
• cough assist
• vent check
• oxygen tank level
• water level in vent bag
• stretching
• activity (Please indicate: H (holding), C (chair), S (stander))
• bath time
• trach care
• change bedding
• cuff check
• nap time
• clean extensions
• weekly cleaning assignment
• medication given

One thing I really liked about this sheet is that I could get more information about his daily care and activity than I could get from typical medical charting. I could make sure Kai was getting out of his bed for parts of each day and was getting stretched. That was important to me. Whatever your focus might be, you can add this into the daily schedule and indicate how often you would like it done. I kept a week's worth of spreadsheets on a clip board and the nurses all loved it. It gave them plenty of direction and they followed it religiously.


I also created a few additional spreadsheets that helped us stay organized and on top of things.


Medication Schedule

This form came in handy because Kai had a GJ feeding tube. Some of his medications were administered through his G tube and some through his J. To keep everything straight, I created this form and kept it on top of the rest for easy reference. Believe me, I had to refer to this many times myself.  I simply put the times along the left hand side and made columns for G tube, J tube and RK (Respiratory treatments) and filled in which medications were given in which tube or treatment at the corresponding time.



Supplies Needed

This is a form I created so that when supplies ran low I could get them reordered in time. We could write supplies down as we noticed they were getting low and when it came time to order my monthly supplies I could just grab this form to make sure I didn't miss anything. It has just three columns: Date, Description, and Number remaining. Nothing fancy here... but it did the job perfectly.

Weekly Cleaning Schedule

This form was very important to me as well. It spread all the cleaning duties out over a week to balance out the tasks. Then I would add a task on the daily schedule to complete that day's cleaning duty. I labeled the days across the top of the columns and indicated the tasks underneath. Example: Disinfect syringes, Clean canister used for suction rinse, wipe down all equipment. Then I could add notes on the bottom for daily and monthly tasks. Example of daily tasks: replace sleeved catheters. Monthly example: replace vent filters and suction canisters.

These sheets are easy to make yourself maybe I just gave you idea's on how to create your own! Please feel free to email me if you would like me to send you a template for one of the forms above: helpingkaiplay@hotmail.com

2011 Pediatric Bioethics Conference: A Parent's Perspective

The Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital hosted its seventh annual international pediatric bioethics conference,"Who's Responsible for the Children: Exploring the Boundaries of Clinical Ethics and Public Policy," on July 22 and 23, 2011, in Seattle. The conference featured nationally recognized speakers in bioethics and drew over 200 participants from across the nation and worldwide. Most participants were medical professionals.

There were many questions that the panel sought to address:

Should individual providers or healthcare institutions provide medical care to children whose families cannot pay?

Do providers have an obligation to tell families about healthcare options that will not be offered because of financial constraints?

How do we balance obligations to provide better healthcare with obligations to improve other factors that influence health, such as diet, exercise, housing and education?

Should care to children be prioritized based on social, physical or mental health status?  who have expensive technology-intensive care needs, such as ventilators, dialysis or transplants?

What about children who have expensive technology-intensive care needs, such as ventilators, dialysis or transplants?

What about children with intellectual disabilities who require special resources, yet will remain dependent on society? Children who have mental healthcare needs? Children who are undocumented?

How will healthcare reform affect the goal of providing for the basic healthcare needs of all children?

You can view a webcast of the entire conference or each individual presentation by clicking here.

I was very excited when Seattle Children's Hospital asked me to speak at this conference. They wanted a parent's perspective, and I have the experience they needed for the presentation. The organizers of the conference wanted to put personal stories and faces to issues families deal with everyday. I said that I would love to speak for all the parents out there that don't have the opportunity. I feel I have a lot of experience in navigating the healthcare system when caring for disabled children because of Kai's progression. I have gone through many different situations dealing with the healthcare system, hospitals and homecare. Having a child that is not able to attend daycare, but does not qualify for home nursing is a challenge many families face. What do you do? How do you provide for your family? I went from confronting this issue to having such a medically intense child that he needed 24 hours of nursing care at home, and we could not qualify for that. Kai, and consequently, my partner and I, began living at the hospital in order to have the best possible care for Kai.

The other parents that spoke had great examples of the difficulties families experience as well. I would love to hear everyone's thoughts and experiences on these matters.

Part 2: 6 to 9 months, The Road to a Diagnosis is bumpy and long, but you have to start somewhere...

Kai’s appointment for an evaluation to assess his physical abilities was set at the local therapy center in December. We had to wait a couple months to get in so I turned my focus on finding a doctor that would spend some time actually addressing my concerns. I had given up on the local pediatricians. I decided to take Kai to my family doctor. They were able to schedule Kai an appointment the next week for his six month well child visit. While at the appointment, I voiced my concerns about Kai’s development, by that time I had quite a few. Not only could he still not hold his head up and roll over, but he also was not really playing with toys, his hands were fisted, and he never really paid any attention to things on the wall or around him at a distance. My family doctor was great. He listened to all of my concerns and even asked why I had not voiced these concerns before. I told him the story of the other clinic visits and the ridiculous answers I was getting from the other doctors. He told me I had a long road ahead of me, and he was definitely right about that.

Our family doctor first referred us back to the original pediatrician’s office that Kai visited as a newborn. The pediatrician then sent Kai to the local hospital to have a CT scan of his head and some blood work done. I only waited a couple days for the results, but it was so stressful. I finally got the call after work one day. Kai’s doctor said the blood work came back normal and that the hospital reviewed his CT scan and had some concerns, but weren’t sure so they sent the scan over to the nearest Children’s Hospital for a second opinion. The second opinion came back with no concerns. The pediatricians advised us to wait and see. I told Kai’s doctor I was not willing to wait and see, so he referred us over to the Children’s Hospital neurodevelopmental clinic. We made the soonest available appointment which wasn’t until late December, over two months wait.

Unfortunately while we were waiting for these appointments Kai began to get sick. He started working to breathe. Some days were worse than others. I took him to one of the local hospital’s emergency room on numerous occasions throughout this time. Every time we went in, we would go back right away because I would tell them he was struggling to breath and they would do a chest x-ray. Then the ER doctor would come in and tell me Kai had a viral infection in his lungs. There was nothing they could do but wait for it to go away on its own. After two months of this, I started to get very concerned. I voiced my concern to the doctors every time, and they would just tell me sometimes a viral infection takes a couple months to go away.

On the last ER visit things got interesting. I was fed up! I told the ER doctor I refused to leave and wanted Kai admitted. I told him he would stop breathing sometimes and something was wrong. The doctor told me that I needed to stop bringing him there and to take him home. Apparently, according to this doctor, if he was admitted for no reason Kai’s insurance would not cover the cost, and I would have to pay the bill. I was very upset by this point; I was crying and telling him I knew something was wrong, but he just left the room and didn’t return. We sat there for over two hours. I did not want to take Kai home again without making sure he was okay, but no one even came in to check on us during this time. I figured he wouldn’t get very good care at this point anyway, so I left. By this time we only had about a week until his appointment at Children’s so I was just hoping Kai did okay until then and hopefully they would find out what was wrong.

In the midst of all of the ER visits we were able to get into the local therapy center for evaluation. By this point Kai was 8 months old. He was still not holding up his head or rolling. He was kicking his legs a lot, but only out and not up at all and he had a tendency to look upward. He did begin smiling all the time though, which was great! The center tested Kai using the Bayley Scales of Infant Development-Third Edition and the Battelle Developmental Inventory-2^nd Edition. The therapy center would provide services through their Early Intervention Program if Kai scored between 1 and 5 on the Bayley and a score of 77 or lower on the Battelle. Kai scored a 1 on both fine and gross motor skills on the Bayley exam showing significant challenges with his ability to move his body and control his head, and low muscle tone. Kai scored 90 for the adaptive development and a 74 for the cognitive development on the Battelle exam. His adaptive skills such as eating strained foods from a spoon, pushing food around in his mouth with his tongue and placing both hands on his bottle at feeding but not supporting the bottle were at the level expected for a child of eight months. Kai was not yet performing skills typical of an eight month old in the area of cognition. He enjoyed watching faces and was able to visually follow with his eyes and head. He also turned his head to follow sounds and responded positively to being held and visually explored his immediate environment. He was not using more mature gross and fine motor skills such as: reaching for toys, amusing himself with a toy, feeling and exploring objects. With these results Kai began occupational therapy ten days later in our home and daycare.

When we pulled up to the Children’s Hospital the next week, I was so nervous. I was hoping they would figure out what was going on. I had heard so many people mention how great this hospital was. We were about to find out for ourselves. We only had one appointment with the neurodevelopmental clinic. We entered the room, and I spent about an hour answering questions and explaining what had been going on: repeated respiratory infections, noisy breathing and developmental delays. The neurologist patiently went through every detail with me. Looking back now, I realize Kai had feeding difficulties, but I didn’t put it all together until this doctor put it all together for me. Kai’s weight was now below the 3^rd percentile, we were repeatedly putting his pacifier back in his mouth for him and he took over 30 minutes to finish a 3oz bottle. The neurologist wanted to get a CT scan, and I told him that Kai had one done and it was sent over there for a second opinion and we were told it was normal. He opened the scan up on his computer and looked at it in silence for a few minutes. He then turned to me and said, “Well, I am concerned.” I lost it. I just started bawling right there in the room. It was like my heart had just gained 15 pounds.

The neurologist we met that day would follow us through our entire journey. He never left Kai’s side from that day on, and became one of his best advocates. He admitted Kai that day for failure to thrive to address his feeding and respiratory issues. As I sat at the entrance waiting for Kai to be admitted, I cried and cried and cried. I missed a step. I didn’t make him right. At some point in the pregnancy, I messed up. These were the thoughts going through my mind. I held him and just cried. I still struggle with these thoughts today. Deep down, I know I didn’t do anything wrong, but when your child struggles I, like most mothers, needed to blame someone. I was the closest target, so blaming myself was the easiest thing to do.

The next morning, I was feeling better. I started to realize Kai was going to get the help he needed, and people were finally listening to my concerns and addressing them! I was told Kai had hypotonia, a condition of decreased muscle tone. Kai first met with the neurology team which ordered an MRI of his brain and blood tests which showed hypoplasia of the cerebellum. This meant his cerebellum was slightly smaller than the average size. The blood tests Kai had drawn wouldn’t come back with results for weeks. We also met with the infant feeding team, which recommended thickened liquids and purees. Kai had a video swallow study the next day to assess his feeding abilities. They fed Kai with many different consistencies of liquids, purees and bottle types. He failed this test. I was shocked. His oral phase was characterized by: overall oral phase inefficiency, uncoordinated suck-swallow-breath pattern, reduced tongue shaping, reduced bolus control, pooling on the floor and sides of the mouth and developmentally delayed. Kai was what they called a silent aspirator. When someone chokes while drinking a glass of water you will hear them say, “it went down the wrong pipe.” Well, Kai’s formula went down the wrong pipe every time he drank, but he didn’t gag. There was no reaction. It was during this time that I realized all of those previous chest x-rays that showed a “viral infection” in his lungs was really showing us the formula that had been going into his airway. Here again was a huge smack of reality for me. Looking back you can always see all of these obvious signs of what was actually happening, but I didn’t have the experience to identify what those signs were pointing to.

After the study, Kai was switched to only liquids that were the consistency of honey and purees. He was no longer able to drink thin liquids. Due to his suck difficulties, we had to squeeze his cheeks together while feeding him a bottle. We were all worried if Kai was going to be able to drink enough fluids this way. He was already weak when trying to suck from a bottle, and we were switching him to a honey thickness that was going to be even harder to drink.

While admitted, Kai was also examined by the hospital’s physical therapy center. Recently, Kai had stopped bringing his hands to his chest. While on his back his arms now remained on the floor. At home we started using towel rolls to help him sit in his high chair, but we were unable to use a bumbo chair, exersaucer or swing. His local therapist was making him some gloves to keep his hands open. Kai would bear some weight through his legs in supported standing. He was also starting to bring rattles towards his mouth which seemingly showed improvement. He was making several vowel and consonant sounds, but not yet babbling. When lying on his side Kai could roll to his back and could also hold his head up briefly while lying on his stomach but would tire out quickly. We were mostly working on tummy time to work on head control and side lying to practice bringing his hands up in front of his face to play.

The big question in everyone’s minds at this point was, is what Kai has a progressive disorder or a congenital disorder? Is he going to get worse, stay the same or get better? No one knew the answer, so I was just going to keep working with him to hopefully help him get stronger.

Kai proved to all of us he could drink enough of the thickened formula. He gained some weight, so we were sent home on our fourth day at the hospital. I had some answers, but not all of them. Just having some answers made me feel so much better. Having the answers to the current problems that were making him sick and having solutions to them was enough for me. I hoped that I would get answers to why Kai was weak, but I was happy with the progress made in just four short days.

Yard Sale/Bake Sale/Silent Auction Fundraiser for Kai Lucas

My friend Susan (she ran the daycare Kai attended as a baby) and my mom Roberta organized a fundraiser for our family. They wanted to raise money for us to help pay for food costs and other bills while staying at the hospital with Kai. I was so impressed by everyone's hard work! Especially Susan and Roberta who worked on the fundraiser for over six weeks. Roberta sent out letters to over 100 businesses and followed up with phone calls and visits to get donations for the silent auction. Susan spent hours in her garage organizing all of the things donated for the yard sale. Many of the things she picked up herself. Roberta contacted local radio stations and her cousin even sent notices of the event to the local news channels. She also had 400 colored bracelets made with Kai's name and this blog address on them.

The day of the event went great! So many people showed up to help set up and brought baked goods to sell. I was able to attend and am so grateful for everyone's support. There was tons of stuff for the yard sale, there was a bake sale and three tables lined with silent auction items to bid on! My uncle Charles came and set up his DJ equipment and played some awesome music for the customers. My sister Rachel offered face painting and sketches for donation. There was soda and water in ice chests for sale. All day there was a steady flow of customers. It was a huge success! About mid way through the day, one of the local news channels showed up and taped Roberta talking about Kai, our family and why they had put the whole thing together and aired the show later that day.

I was not able to spend the whole day at the fundraiser. I had driven over to Yakima from Seattle where Kai was admitted for the event. It is a two and a half hour drive, and Kai was having a rough weekend, so I wanted to get back to him. The next day Susan drove over to Seattle and brought a bag of cash to the hospital for us. I was shocked at the amount of money raised. They raised over $4,500 in one day!

 When the news station aired the story about the event, they said that the money raised from the fundraiser would help pay for medical bills and adaptive toys.  Since Seattle Children’s Hospital took great care of Kai and provided him with everything he needed, the money was used for something even more valuable. What she and everyone else involved did was give me time with my son. That is worth the world to me, and I am just so thankful for everyone's help.  Kai was in the hospital for the better part of eight months and our savings was gone. His medical status continued to decline even with all the medical interventions we tried to stable him out. All I wanted was to spend whatever time I had left with him and because of everyone's help I was able to do that. Thank you to everyone for supporting Kai and our family!  

In Loving Memory of Kai Samuel Lucas April 7, 2009 - August 14, 2011

Kai Samuel Lucas passed away peacefully in his mother's arms on Sunday, August 14th, 2011. Although his life was short, it was filled with great happiness and love. The love he showed to everyone he met was and is an example to be followed by all. His smile will live in our hearts forever.

The sweetest letter I have ever received:

Dear Jessica,
     As your nurse care coordinator, I find myself once again, needing to make a referral. Since I believe in God and heaven, I called God, in my usual way, and told him about Kai. I didn't have to tell him about insurance benefits or anything like that, and right away, God said he had the most perfect place for Kai and that he was just waiting for him - and that he already knew he was coming.
     God did tell me though, not to send any of the equipment because Kai won't be needing any of it. Everything he needs will be right there until his family comes later. To be honest, this referral was much easier than changing from Apria to Childrens Home Care - But... also much harder.
     So, as usual, I want all of our bases covered, and Jessica, this one is for you. A paved pathway for a very special boy with big blue eyes and the most gorgeous eye lashes.
     Some people stay away from the hospital after you leave, and some people come back. Whatever you decide just know that there are going to be times when I think of you - and remember....

The Cord

We are connected,
My child and I, by
An invisible cord
Not seen by the eye.

It's not like the cord
That connects us 'til birth
This cord can't been seen
By any on Earth.

This cord does it's work
Right from the start.
It binds us together
Attached to my heart.

I know that it's there
Though no one can see
The invisible cord
From my child to me.

The strength of this cord
Is hard to describe.
It can't be destroyed
It can't be denied.

It's stronger than any cord
Man could create
It withstands the test
Can hold any weight.

And though you are gone,
Though you're not here with me,
The cord is still there
But no one can see.

It pulls at my heart
I am bruised...I am sore,
But this cord is my lifeline
As never before.

I am thankful that God
Connects us this way
A mother and child
Death can't take it away!

Anonymous

A Seattle Times Author, Nicole Brodeur, wrote a great article about a recent visit to the Children's Hospital in Seattle by Alan Menken. It includes a video and pictures of his visit. I was fortunate enough to take Kai out of his room for a short time to listen. He absolutely loved it. He has not been out of his room since July 3rd so it really was a great opportunity. Mr. Menken was so nice and I am very glad he was able to come and brighten some faces. I know it is hard for others to see sometimes what these kids go through but I hope he knows he made a difference that day.

Originally published July 21, 2011

Nicole Brodeur

Acclaimed composer visits hospital, gets more than expected

The kids may not know who wrote the songs for "Beauty and the Beast," "The Little Mermaid" and "Aladdin" — the musical opening this week at the 5th Avenue Theatre — but they sure know the songs.

Nicole Brodeur

Seattle Times staff columnist

They can't keep the Disney DVDs in the playroom at Seattle Children's hospital.

Patients take them into their rooms, their families into the waiting area.

"They are usually the first ones to be taken," one nurse told me.

Which boded well for composer Alan Menken when he walked in the other day.

The kids may not know who wrote the songs for "Beauty and the Beast," "The Little Mermaid" and "Aladdin" — the musical opening this week at the 5th Avenue Theatre — but they sure know the songs.

And yet, for all the logistics surrounding Menken's visit, some things weren't to be planned, like when patient Shannon Wallace sat down at the piano to play for a bit, unknowingly forcing the eight-time Oscar winner to cool his heels on a couch.

Menken listened intently as Wallace, 16, her IV drip beside her, played a swirling melody that she had composed herself.

"Reminds me of Joni Mitchell," Menken told Wallace when she finished. "Sounds like 'Blue.' "

Then Menken sat down to play some things he had composed.

"I wrote a lot of the those Disney things," Menken said casually.

Wallace, who has cystic fibrosis and has been at the hospital for eight days, was stunned.

"He's a legend," she said. "I think it's cool that he's here and that he would devote his time."

While the adults in the room stood smiling and spellbound, the kids did what kids will do: Two boys — one of them in an arm cast — ran between a fort of cushions and the Xbox console. A baby watched his mother blow bubbles. A boy in a wheelchair, and another with a breathing machine, were parked not far from the piano to listen.

"Music helps to relax us, music can calm us, music can make us feel safe when we're scared," said Dave Knott, the hospital's music therapist. "This music that (Menken) has written is so meaningful to the kids. It's the music that they love."

Menken invited one little girl to sit beside him on the bench, and taught her a few notes of accompaniment as he played requests: The theme from "Beauty and the Beast," "Under the Sea," and, of course, "A Whole New World," from "Aladdin."


"This is what I wanted him to experience," said Mateo Messina, who has been playing piano here every month for more than a decade. He also composes and produces an annual benefit concert that has raised almost $1 million.

"What else can I play for you guys?" Menken asked.

Rich and famous people do nice things all the time. Donating money, visiting places like this. It comes with the territory of doing well and being known; the expectation to give back is always there. Always.
But this concert in the playroom seemed to be more than Menken expected.

He walked out after about an hour at the piano and released a deep and sober sigh.

"That was great," he said. "So heart-rending."

Menken knows suffering and loss, especially that of his friend Howard Ashman, who wrote the lyrics for all of "The Little Mermaid," and some for "Aladdin." (Those that weren't included in the film have been restored, with their storyline, into the musical.)

Menken, who turns 62 today, met Ashman in New York in 1979.

Not long after they won the 1990 Oscar for Best Original Song for "The Little Mermaid," Ashman told Menken he was HIV positive. They went on to write and win two more Oscars for "Beauty and the Beast" and had begun writing songs for "Aladdin" when Ashman died in 1991. He won a posthumous Oscar in 1992 for Best Original Song for "Beauty and the Beast."

"He was brilliant, very considerate, sensitive, demanding, temperamental and larger than life," Menken said of his friend. "Had he lived, he would have been a major contributor to our culture. Major."
And he would have been in Seattle this week for the opening.

"It feels amazing and joyful and sad," Menken said. "I watch these moments and I think, 'God, Howard's not here.' I still feel it very strongly; the connection."

On the way back to his hotel, Menken and I talked about all kinds of things. Family. The Seattle theater scene. Then, after a pause, this:

"What do you know about cystic fibrosis?" he asked.

I said I knew there wasn't a cure. That it was life-threatening.

Neither of us said much after that.

We pulled up to Menken's hotel, and for just a moment, he sat in the passenger seat, distracted.

"That was a good thing you did," I told him.

"Yeah... " he said, quietly. "It haunts you."

All the more reason to write songs that can light up a movie. Funny songs. Happy songs. So happy that kids will want to take them into their hospital rooms, and keep them.

Part 1: Birth to 6 months, Concerns arise

Kai Samuel Lucas was born on April 7^th, 2009. He was born with no complications at 9lbs 3oz and 21.5 inches long. He was such a big boy! We were released from the hospital the next day. I brought Kai back to the hospital for a weight check a couple days later. He had lost more weight than usual, so the nurses told me to feed him every couple hours and sent us home. We went through that same process for a couple of weeks. I kept trying to feed him, but he kept wanting to sleep. It didn’t seem too alarming to the hospital staff, so I wasn’t that worried. I was not breastfeeding. It was too difficult to monitor how much he was eating by breastfeeding, so I switched to formula at three weeks. The ABC clinic where I was taking Kai did not see infants after they were two weeks old, so I had to monitor his food intake until his two month checkup.

Kai’s two month checkup went fine and it seemed like he was on track. His four month checkup went the same. He was rolling over and hitting all his developmental markers. As Kai approached five months old things started to slow down. Kai stopped rolling over and was still struggling with little to no head control. My neighbor brought over another five month old for us to meet, and I knew right away that Kai was different. Kai was my first child, so the comparison with another child his age really brought his developmental delays to light. My neighbor was standing in my living room with this little boy sitting in her arm holding his pacifier in his mouth. At the same time I was sitting on the couch cradling Kai in my arms like a newborn.

After I realized there might be a problem with Kai’s development, I started asking doctors about it. I soon discovered that it was not going to be easy to get someone to listen to me. This would be a theme in our life for months. I first went to his pediatrician to raise concerns.  Medical professionals reassured me that he was fine. I decided to take him to a different office to see a new pediatrician. When I told that doctor that I had concerns with his development, she told me that (without even touching Kai!) she is not concerned unless the children aren’t walking at 18 months. That is just absurd! Was she saying that if Kai could not even hold his head up or roll over at a year that would be okay?

I thought about where to take him next and decided on my family physician.  Then I heard about a local office that offered an early intervention program with physical and occupational therapy for infants in the area. I called the office and asked them to evaluate Kai. They agreed to do it without a doctors request. They told me that the evaluations they do usually come from doctors’ offices, but I told them I couldn’t get a doctor to say something was wrong. It was frustrating, and I was thrilled when they agreed to see him.

Media Player

Kai absolutely loves to watch movies now, though he was never interested in them when he was younger. I played them on the TV and he would not pay any attention to it at all. Kai also never paid attention to anything very far away like pictures or wall decor. When Kai had his tracheostomy placed, I could not hold him for 7 days. This was torture for me. All I did before was hold him. I had no way to entertain him besides standing next to him while he lay in his bed. I always felt badly leaving him because he would just lay there with a picture on the ceiling and a light up fish tank next to him, that I think he didn't even really care for. One day I was messing with my iPod and downloaded a Netflix app and thought maybe he would watch a movie from the iPod. I taped it to one of his crib toys, and he was smiling away. After a few weeks of using the iPod we knew just how much he loved to watch movies, so his grandparents bought him a media player.

It is so great for Kai. We initially thought about getting a flat screen to put above his bed or something but I wanted him to be able to watch movies from any position. It wouldn't be good for Kai to stay on his back for long periods throughout the day. Kai currently spends the majority of his time in bed and is rotated on each side and back every 2 to 3 hours. We needed something that we could move around with him. The media player's screen swivels all the way around and forward so Kai can watch his movies on his side or back.

Kai's grandparents also bought us the cords used to hook the media player up to my iPod so he can watch movies using Netflix too. Now Kai has favorites and everything. I guess I just never got a screen close enough for him to really be able to watch. I feel so much better leaving him for awhile to eat or get things done knowing he is finally being entertained.

Fisher-Price-1-2-3-Lights-Sounds-Ball

The Fisher-Price-1-2-3-Lights-Sounds-Ball is one of Kai’s favorite toys! It plays music and has lights that go off when the base or ball is hit. It is very sensitive to touch. I use this toy while Kai is side lying and it really gets him working his arms to hit the ball. It is so hard to find toys that he is strong enough to set off. While using this toy he really works at hitting the ball and gets results. If he can’t reach the ball he can still set off the lights and music by hitting the base. I bought mine from Wal-Mart but I'm pretty sure you can find one just about anywhere.

Stories from the Heart

Stories from the Heart: A Mother's Day Tribute is a story that aired on Saturday April 30, 2011 for Mother's Day in Seattle by KOMO 4 TV. Kai, Ashton and I are featured at the end of this fundraiser program. The program is an hour long and includes some amazing stories of children and families at Seattle Children's Hospital and also some information on the research and community services offered through Children's. I was so honored to be a part of it and thankful to my Mom for nominating me. I received so many great comments from everyone on her submission too. I really appreciate everyone's support and words of encouragement. It helps me tackle another day and stay strong for my little boy!