Letters to Ross: Daddy, why do I need oxygen?

Letters to Ross: Daddy, why do I need oxygen?: I just Love you Daddy! Thank you for taking such good care of me! Look Mommy! No oxygen tubes and I am getting stronger. I can feel i...

Daddy, why do I need oxygen?

I just Love you Daddy! Thank you for taking such good care of me!

Look Mommy! No oxygen tubes and I am getting stronger. I can feel it!

Ross,

   Congratulations! You are well on your way to being weaned from oxygen while you are awake and playing! You have been doing so good and over the last four days keeping your oxygen saturation levels in the low to mid 90's. That is super! You may wonder why you have to be on oxygen at all and here is why. When they repaired your heart it was functioning so much better than prior to your surgery that your lungs were not used to working like they were supposed to. All the oxygen rich blood that wasn't all mixed up like before was causing what they call pulmonary hypertension. They added oxygen as a therapy for your lungs to get used to their new requirements now that your heart is functioning almost perfectly. You have been on a low dose of  O2 for over a year now and the hypertension is all but gone. Your cardiologist says that you don't need oxygen from a heart standpoint which leads us to the other issue for you needing it. Whenever you fall asleep your saturation levels begin to drop into the mid to low 80's. That is not terribly low but not good enough to be healthy for long periods of time as when you do sleep. Sometimes kids who have Down syndrome also have hypotonia (weak muscle tone). The doctors think that when you sleep your muscles around your trachea relax so much that it may allow it to collapse part way and slow down the amount of air you breathe in. So to make sure you do, we keep you on oxygen while you sleep.
Your therapist has some good news. She is licensed and trained to try a new type of therapy with you that might help your breathing and also swallowing strength. This new therapy uses very small electrical pulses to contract the muscles in your throat. If it works the way that we think it will it should help your tracheal muscles better support your airway and not allow it to collapse and decrease your need for oxygen while you sleep too. One step at a time buddy! We will get there eventually on your own time and we will do whatever we can to support these efforts!

I Love you Ross!

Daddy

Letters to Ross: Oh! The Therapies!

Letters to Ross: Oh! The Therapies!: Hello...Mommy, I Love You! Ross' speech therapy utilizes many toys with interactive functions to encourage him to vocalize sounds and...

Oh! The Therapies!

Hello...Mommy, I Love You!

Ross' speech therapy utilizes many toys with interactive functions to encourage him to vocalize sounds and syllables. Here we are encouraging him to...yes learn to use a cell phone. Lord help us! =)

I love my toys. They teach me things by singing fun songs and making really cool noises.

Ross,

   Since you were very young, you have had many types of therapy to help you build the many basic skills such as muscle control in your head, neck and core. These key skills are so important to help you develop and learn all of the functions you will need to be successful in life. You have some of the best therapists in the whole world helping you on your path to greatness. The therapists from Missouri First Steps program are all awesome.
   On a weekly basis you get occupational therapy, early childhood development, physical therapy and now we have added speech therapy since you are trying to talk all of the time. In addition you also get visits from our wonderful dietitian to help you get the best possible nutrition to help you grow big and strong. All of your therapists just fall in love with you from the day they meet you. They cannot resist your sweet smile and those long eyelashes and since all of them are ladies, they are jealous of yours! Most of all, I think they fall in love with your fight and determination to succeed. You have been through so much in your 21 months of life. All of the milestones that you have hit only to be knocked backward by an illness or seizures. It has been the proverbial scenario one step forward and two steps back but you never give up or quit trying. If there is one thing that Mom and I can say about you it is that you are determined. You have the drive to do anything that you want in life and we are here supporting you all of the way. We will take every step with you and help you achieve those goals my baby boy! God willing, we will make it, but in your own time! Patience and determination Ross. Patience and determination!

I Love you so much and I am proud of your achievements every day son!

Daddy

Letters to Ross: Heart Surgery ~ June 22, 2011

Letters to Ross: Heart Surgery ~ June 22, 2011: Ross' heart surgery 6-22-11 Nothing can prepare you for the sight when you first walk into the PICU and see your child hooked up to al...

Heart Surgery ~ June 22, 2011

Ross' heart surgery 6-22-11

Nothing can prepare you for the sight when you first walk into the PICU and see your child hooked up to all sorts of machines, monitors and tubes running everywhere. You are just so thankful and relieved that the surgery is over and all went well!

It was so nice to be able to hold you again!

You took your bottle right away when you woke up, we were so proud!

Ross,

   The day we saw your heart defect on that first sonogram, we knew that one day in the future we would be facing something more scary than anything your mom and I have ever experienced. Your heart repair surgery.

   So we had a clear understanding of exactly what was wrong with your heart, we met with several doctors who specialize in heart health. These doctors are called cardiologists. The doctor drew us pictures of your heart and showed us where the two little holes were in your heart. He then went on to explain how they would use a special material to make a patch that would fix your heart. They told us about the surgery and exactly how all of it would  happen and when we should do it. So sometime after you hit six months old was the time window to do the surgery. Now we just had to wait.

   We were scheduled the for surgery May 5, 2011, but you caught an infection and we were forced to postpone the surgery the day before it was to happen. The doctors are really careful when you are getting ready for surgery so they don't take any chances if you have been sick or are not feeling well. This could complicate things and put you at a greater risk from the surgery itself so they want you to be completely well. So we had to wait and finally got your surgery rescheduled for June 22, 2011.
   The day of the surgery arrived and we took you into the surgery prep area. They changed you into a little gown and we waited for the time when they would take you into the operating room. You had so many people come to be there for your surgery. Aunt Sue, Aunt Mindy, Uncle Charles, Grandpa Bill and Grandma Jeanne and Marilyn all came just to be there for you and maybe mom and dad a little.
   When the nurses finally came to get you we all hugged you and kissed you so much because we would miss you so much while you were gone. We all followed you down to the doors of the surgery prep room and gave you one last kiss before you had to go. Then came the really hard part. We had to wait. Everyone went with us to the surgery waiting room and the nurses would call us every hour or so and told us what was going on and that you were doing super. We were so proud of you Ross. Then before you know it, the doctor came out and told us the surgery went perfect and that they had already taken you down to the PICU and we could see you in a little while. We were all so happy to have such good news! The doctor fixed your heart and you were asleep the whole time.
   We waited about an hour in the PICU waiting room before they would let us come to see you. It seemed like the longest hour of my life but finally they came to get us so we could be with you again.
   You were hooked up to all sorts of monitors and medicines so the nurses could make sure you were recovering from the surgery ok. The thing that seemed the most disturbing was the bandage covering the sutures on your chest and the drainage tube coming out just below it. The drain tube helped remove any excess fluid that was in your chest after the surgery. You can see from the pictures what I am talking about. It was pretty scary to see you like this. You were still completely sedated so you would not feel any pain from the surgery and to keep you from pulling any tubes or lines out which is something you like to do! You made really good progress that night and the next day they were able to take you off the breathing ventilator and let you breathe on your own. This was a really good sign that you were getting stronger by the hour. We could hardly wait until we could hold you in our arms and finally after 3 days we were able to. You were still pretty sleepy and on some pain medications but they were weaning you from something every day. On day four we actually started feeding you again with your bottle and you did really good with it. I remember telling mom that you were sucking harder than I had ever seen you do before. It was so encouraging Ross. We were only in the PICU one more day and they moved us to a regular room which was another step towards getting to go home. After a couple of days of recouping you were back to your normal self and we got to go home. Eight total days in the hospital for your heart surgery and we were back home. Ross you are a ROCKSTAR!!!!
   Being at home after the surgery was a little scary. Dealing with the incision was so tedious and I was afraid that any movement was causing you pain or that it was going to start bleeding but it never did! Thank goodness! Another few weeks and the sutures came out and your scar healed up really nice. You were pretty much back to our normal but heart healthy baby boy!

Daddy Loves you Ross!

Letters to Ross: Ross! Are you ok??? Infantile Seizures at 6 months...

Letters to Ross: Ross! Are you ok??? Infantile Seizures at 6 months...: Link to Youtube video of  Ross 5-10-11       http://youtu.be/gtoYETEsyUk Parents:  Please, view this video! It is a little sc...

Ross! Are you ok??? Infantile Seizures at 6 months

Link to Youtube video of  Ross 5-10-11      http://youtu.be/gtoYETEsyUk

Parents: 

Please, view this video! It is a little scary to see but it is so important that you recognize the symptoms of Infantile spasms or infantile seizures. The first time I saw Ross have these spasms I wasn't sure if he was having hiccups or colic episode. I had never seen him do anything like this so I knew something was wrong. Anytime you see anything out of the ordinary with your child, I highly encourage you to videotape the activity and have it professionally reviewed. 

Ross,

May 10, 2011.

I will remember this day forever. You had just turned six months old and gotten a clean bill of health from your pediatrician. All the updated immunizations completed and gaining weight like a champ and then it happened. We had just finished feeding you  your bottle and you began having very slow and jerking movements with your arms and legs. The movements kept happening and I kept talking to you to see if you would respond. I grabbed my phone and videotaped the episode which thankfully subsided after about 8 minutes. You just returned to your happy playful self and started smiling at me which made me feel so much better. I was really worried about you so I called the Nurses line and started asking questions and telling them what I had seen. They told me to keep a close watch on you and if it happened again to take you to the hospital. Well you played for most of the afternoon and right after you had your nap you started having these spasms again. So I loaded you up and took you to the ER. By the time we got there of course you had to make me look silly because you were acting like a happy healthy little guy. We got to see the doctors and I showed them the video. They were really concerned and they called a special doctor called a neurologist. These types of doctors take care of your brain. The neurologist gave us some medicine and set up an office visit for the next day. The next day another doctor looked at the video and said that what you were having was infantile spasms. He said that it was really great that I took the video and it helped them make the initial diagnosis. TO be sure the doctors scheduled a test called and EEG which measures the brain waves and electrical activity in your brain. 

The EEG was really hard on you and mom and dad. We had to keep you awake really late the night before and wake you up really early the next morning and not let you fall asleep. That my son was no easy task because as soon as you were in your car seat your eyes got heavy and mom had to do everything possible to keep you awake. When we got to the EEG lab the technician took us into a little room where they put electric sensors all over your head and glued them down. You didn't like that very much from what I remember. The test took about an hour and mom stayed with you the whole time holding your hand and keeping you close. Then we had to wait another day for the results. 

The doctors had us come back in to the neurology clinic to explain what the EEG showed abnormal electrical activity that confirmed what we had seen  in the video. That you indeed had Infantile spasms. We began a specialized medicine that started working really quickly and after about two weeks of taking it the seizures began to subside and finally stopped all together. We were so happy that the outcome was so good and that you were not suffering them any more. Or so we thought...

I Love you so much Ross,

Daddy

Ross turns 6 months old pictoral

Daddy, I Love You! 

Ahhhhhh! Daddy your mustache is scratchy!!!

Stop! Please line up and I will sign autographs for you all!

Mommy and Daddy got me this cool tummy time play mat and I just love grabbing all of the hanging fish and sea creatures! 

Daddy when can we go play golf?

Ross,
April 23rd, 2011

Your 6 month birthday was such a great day for us all. You had such intensity in your play and activities. We took your NG tube out for some of your pictures just so we could have a little bit of a normal day. With all of the health concerns that you have endured and overcome a day where everything is kind of normal is few and far between. It was so nice celebrate this way and be normal for a change. I know that in the future there will be many more of these normal days to cherish. Don't ever feel like there is any pressure on you to hit goals because we are patient and know you will in your own time. Mommy and I promise to give you all of the support and help that you need to succeed in life.

I Love you,

Daddy

Letters to Ross: Something to be Thankful for!

Letters to Ross: Something to be Thankful for!: Ross  6 days old! Daddy won't ever let you go baby boy! My seahorse sang to me and helped me think of mommy and daddy when they ha...

Something to be Thankful for!

Ross  6 days old! Daddy won't ever let you go baby boy!

My seahorse sang to me and helped me think of mommy and daddy when they had to go home at night!

Ross,
As I hold you so tight in my arms it is obvious to all who know me just how proud of a daddy I am. You are so tiny, just over 6 lbs. in this picture. It was taken in the NICU at St. Luke's hospital in Kansas City, MO. Your mom and I drove back and forth from home to the hospital every day and night to be with you, feed you and mostly love on you. When we fed you, we always had your favorite toy playing soft music. You loved looking at the lights on your seahorse and many times it helped you fall asleep. There was nothing more wonderful than to be holding you and have you fall fast asleep in my arms. You may wonder what that tube is coming out of your nose.  Well with many babies like you, feeding issues are very common. You were very weak and have what the doctors call hypotonia which means weak muscle tone. So when you would drink from your bottle you would work really hard to suck and swallow but you would tire quickly. So, to make sure that you got enough nutrition and would grow, we had to put formula in an NG tube. What is an NG tube? An NG tube (nasogastric tube) is a tube that went through your nose, down your esophagus and into your tummy. Having this tube helped you grow and gain weight. Within a few weeks of eating this way you were getting much stronger and began doing really well with your bottle. You actually had to pass a test by gaining a certain amount of weight by bottle feeds only before they would let you go home. No more NG tube. On Thanksgiving day, after 31 days in the NICU, we finally got to take you home. It was a day that your mom and I were truly thankful for because at last we were all going home...together.

This was your first day home and you were so comfortable in your new bed!

I Love you so much baby boy!
Daddy

Letters to Ross: A Little Help From Our Friends!

Letters to Ross: A Little Help From Our Friends!: Ross - You are 8 minutes old in this picture, we were so excited to finally see you!! Ross,    When we found out that you woul...

A Little Help From Our Friends!

Ross - You are 8 minutes old in this picture, we were so excited to finally see you!!

Ross,

   When we found out that you would probably be born with Down syndrome, your mom and I were not sure exactly what that meant. We wanted to be good parents but Down syndrome was something we knew little about. So, to learn as much as we could about Down syndrome and to give you the best quality of life possible, your mom and I started looking for help. We found out about a place right here in Kansas City that teaches parents skills that they will need to care for and raise a child like you. A very nice lady at The Down Syndrome Guild of Kansas City contacted us and we went to see her. When we arrived Amy introduced herself to us and we sat down and talked. She told us all about their organization and mission to help families like ours who would be blessed with a child having Down syndrome. As we talked, Amy answered a whole list of questions that mom and I had. If she didn't know the answer she provided us with a list of other people and resources to get those answers. We talked for a long time with Amy and she helped reassure us that having a child with Down syndrome was not a bad thing at all. In fact, most of the reasons that people misunderstand Down syndrome are that they just didn't have the facts about this genetic condition and are scared. Amy became our friend that day and gave your mom and me a lot of hope, encouragement and strength. Because of her, we were able to educate ourselves so that when you were born, we would be prepared and be the best parents in the world just for you. As we were getting ready to leave, Amy said she had a gift for us and it was a huge basket of LOVE. She then welcomed us to our new extended family. The basket had lots of toys, blankets and clothes for you as well as books and videos for mom and me. The gift basket was so wonderful it made your mom and me very happy. 

   There were a lot of other wonderful things about the KCDSG that we learned that day. One wonderful thing was that there are families’ right where we live that have children with Down syndrome and that we just became a part of a wonderful extended family called the Eastland Friends. That means we have lots of support and lots of friends close by who we can talk to and you can play with when you get bigger. There are new parent breakfasts where mom and I can go and meet other parents and talk about their experiences of raising kids just like you. It helps us know what to do if certain things happen as you grow up. And guess what, you got to go too and meet other kids. There are lots of wonderful fun things that they do as a group but I will tell you more about those in another letter. What I want you to understand is that Amy, her staff, the volunteers and all of the wonderful, wonderful sponsors of the KCDSG right here in Kansas City care for you and give families like ours hope, education, support and most of all unconditional love. We owe them a great deal and we will be a part of their family forever.

I Love you Ross,

Daddy

For more information on the Down Syndrome Guild of Greater Kansas City or how you can volunteer or support their mission please go to http://www.kcdsg.org/

Letters to Ross: Hello

Letters to Ross: Hello:      My name is Ross! Won't you come with me each day and read the things my daddy has to tell me about my life? If you are wondering why...

Letters to Ross: My Mom and Dad

Letters to Ross: My Mom and Dad: Well before I let my Daddy take over and do all the talking for me, I wanted to take the opportunity to introduce the bestest and most lov...

Letters to Ross: One of the Happiest Days of our Lives

Letters to Ross: One of the Happiest Days of our Lives: ROSS YOU ARE THE LIGHT IN MY LIFE!    Ross...I remember the first time mommy and I actually got to see you. You were still inside you...

Letters to Ross: May 28, 2010 part 2

Letters to Ross: May 28, 2010 part 2: Ross in addition to finding out you were a little boy, the doctor also told us that your heart had a genetic defect and that there we...

Letters to Ross: Reassurance from Heaven!

Letters to Ross: Reassurance from Heaven!:  Ross on our second visit to the doctors office to get another sonogram, we could not believe our eyes! After all of the worrying tha...

Reassurance from Heaven!

 Ross on our second visit to the doctors office to get another sonogram, we could not believe our eyes! After all of the worrying that mom and I did about this genetic thing called Down Syndrome and whether you would be healthy and happy...you gave us a sign we will never ever forget. One of the first images the sonographer pulled up that day was of your little arm. You gave mom and me the thumbs up and said to our hearts that everything was going to be OK!!! Bless your little heart! You made mom and me feel so relieved and there was no way that this was an accident. We laughed and laughed and then we cried a little. With each tear of happiness, you in a single gesture reassured us that you were alright! We Love you so much Ross. 

Mom & Dad

May 28, 2010 part 2

Ross in addition to finding out you were a little boy, the doctor also told us that your heart had a genetic defect and that there were two holes in it. He called it an AV canal defect. It really scared your mom and I and we were really worried that it would cause you to be really sick. The doctor then told that this condition of the heart gave you an 85% chance of being born with a genetic disorder called Down Syndrome. At first your mom and I were really sad and we cried. We thought that this condition was really bad an that you would suffer so much. We were sad that you would not be normal like other kids, but you know what? The sadness went away really quickly when we realized that you were still our baby boy and we were going to love you more than ever because you were a gift from heaven given especially to your mom and I. If you get a chance I want you to have me read a poem that your mom shared with me when we started learning about Down Syndrome. It is called Welcome to Holland. I will explain how it made your mom and I feel when we read it for the first time. Just know in your heart that we love you with all that we are and we will make any sacrifice to see you be all you can be. We will be there to hold your hand in this journey and you will never be alone. We Love you Ross!

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

One of the Happiest Days of our Lives

ROSS YOU ARE THE LIGHT IN MY LIFE!

   Ross...I remember the first time mommy and I actually got to see you. You were still inside your mommy's tummy and the doctors used a machine called a sonogram to see you there. This was the most wonderful day of our lives because we found out that you were going to be a little boy and we were sooo happy! We had already decided that if you were a little boy that we would name you after your two grandpas. Ross was my dad's name and William is your moms daddy. 

 

My Mom and Dad

Well before I let my Daddy take over and do all the talking for me, I wanted to take the opportunity to introduce the bestest and most loving parents in the whole world! This is my Mommy and Daddy just before a KC Chiefs game in September 2010. I'm in this picture too. Can you guess where I am?

Hello

     My name is Ross! Won't you come with me each day and read the things my daddy has to tell me about my life? If you are wondering why I would ask this of you...it's because I am trying to raise awareness for kids like me. You see, I was born with Down Syndrome. Could you tell by looking at my cute little face? Did you see it in my loving eyes? Could you feel it in the way my mommy is holding me in her arms so tight? 
     I am just one of thousands of kids in the world with Down syndrome who face certain challenges and overcome them one day at a time. Why don't you come along with me and see me grow!

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