He's come so far...

Special Olympics State Track Meet
Columbus, Ohio / June 2016

Ryan has come so very far since my last entry.

He is less than a month away from his 10th birthday, but I sent him to school today for picture day in size 24 month shorts and 4T shirt...so he's maintaining the expected small size.  He is actually getting pretty tall, but just has no meat on those bones!  It is certainly not for lack of eating, because the boy can really eat!  

His small size doesn't stop him though!  

He participated in Special Olympics track and field for the first time this year.  His events were the 100 Meter Dash and softball toss, and he always competed against kids and adults much larger and older than he was...but he did his best and had a GREAT time!!!  He absolutely loved it, and his coach and teammates were wonderful too.

He is old enough to be in 4th grade but, because we kept him in preschool an extra year, he's currently in 3rd grade.  

He started a new school this year due to the rearrangement of the elementary special education classrooms within the district, and it is also the first year he doesn't have a sibling in school or on the bus with him.  My biggest worry was that, because the school wasn't used to having special needs classrooms in their building, the kids there wouldn't be as compassionate.  

Luckily I was wrong.  All that worrying was for nothing, because he loves his new school, feels welcome, and has been treated with kindness and acceptance.  My heart is happy.   

Ryan is very confident and truly able to be himself without worrying what others think. I am actually quite envious of those traits.   I do fear the day when he realizes he's different, especially if it's because someone makes him realize in a not so kind way.  One day at a time though, as my worrying about things that haven't happened yet doesn't seem to serve me well anyway.

His personality is amazing.  He's funny and sweet and very determined.  His social skills are a big strength for him, and I know this will always be helpful throughout life.

He seems to fit in perfectly with 4-5 year old typical kids, in a developmental sense, so he does have significant delays and challenges compared to other almost 10 year olds.  He has some sensory issues, a lot of difficulty with fine motor skills, people still have a hard time understanding his speech sometimes, and he needs help with more things than other kids his age.  These challenges, though, are welcome.  Welcome because were told he would NEVER EVER do so many of the things he is doing now.  The fact that he continues to make progress and such significant gains is amazing.  We do not take it for granted.  

The things he can do FAR outweigh the things he can't.  He runs, he eats 100% by mouth, he does well on spelling tests if he can type his words instead of write them, has started to read, he gets himself dressed, is day potty trained, has no more serious medical issues or need for surgeries, he helps pack his lunches, is getting really good at shooting baskets, he gives the best hugs, makes people smile regularly, and is a really good friend to others. He also loves to dance, listen to music, play in the water, and is pretty obsessed with time and weather. 

He has made me a better mom, a better person, and provided me with a better perspective as a social worker who helps other families going through their own scary, difficult, and uncertain times.  He has helped my other two kids to be even more compassionate and amazing.  He has inspired me to write  children's book manuscripts and publish one of them (still working on getting the second one published!!), run marathons, and so much more.

He has worked so hard for everything and remains happy and determined.  

His brother and sister are heroes to him and I believe that they have helped him get to where he is now.  I have no doubt that they will continue to inspire and motivate him in ways that I can't and I am so thankful for all three of them!

We are so proud and happy.   We can't wait to see what else Ryan has in store for us...but the joy and overwhelming love we have for him will stay the same no matter what!

Brotherly love.

Sisterly love.

Tiny but Talented...sums it up!

As we begin a new year I thought it'd be a good time to write an update on great the progress Ryan has made since the last entry, as well as the challenges that he will face this year.

I'll start with the progress, and I will not deny that I have shed tears of happiness as I have watched him along the way. He continues to LOVE school, and now that he knows where the school bus is taking him he's beyond happy to board the big yellow road machine on school mornings.

He still receives his physical, occupational, and speech therapy at school, and we have nothing but good things to say about how hard his therapists and teachers have worked to help him improve in all areas. He recently began walking without the assistance of his walker, which has been a huge accomplishment! He was a little timid initially, with some uneasiness about walking outdoors or outside of our home at all. Yet with practice his confidence improved quickly and he can now walk independently for fairly long distances, indoors and out! Check out the video of him walking on his birthday in October when he was just starting to get comfortable without the walker inside our home. Best of all, it means he can fully participate in our frequent family dance parties...while dancing on his own two feet! This has saved his pants from getting more holes in them, and my back from not carrying him as much!

Ryan's receptive language is excellent, and his speech is progressing quickly. Although he still has difficulty pronouncing certain letters and making certain sounds he's speaking in full sentences much of the time. I was ecstatic when his speech therapist recently told me that, although is speech is delayed, it's developing like a typical child! He still uses some sign language but we haven't been learning much more of it due to his increase in verbal skills and ability to show us what he wants (if he's not able to verbally express it). "Oh okay, cool mom" is one of my new favorites. When he says, "momma I pooped" I am pretty sure he's very near being ready for potty training, so that's going to be another milestone to look forward to.

He is able to sing many songs now too including, "Happy Birthday to You", "Twinkle Twinkle Little Star", "Itsy Bitsy Spider", "Up on the Housetop", and "Wheels on the bus". He is still VERY motivated by music and truly enjoys it...which of course he gets from his music lovin' mommy!

He can identify colors, basic shapes and count to ten and seems to learn new things every day. I couldn't be more proud of Lauren and Zachary who have become even better older siblings. They are patient (well, most of the time!) and willing to include him in all the activities, games, etc that he's able to do. He learns and grows by simply being around them, but even more so by being truly accepted and loved by them.

He is now almost 19 pounds at the age of four. He is very active and walks, dances, climbs, boxes, plays swords, tackles his brother, and so much more! This leads me to some of the challenges he will be facing this year. Things that I am positive will only hinder his activity level temporarily, and not his long term-progress. Yet although Ryan is bigger, stronger, and healthier overall than he has ever been it's a mother's nature to worry about him undergoing surgery. As I worry I am certainly staying positive, knowing that he is a determined, motivated, resilient little boy that's ready to prove the world wrong and ready to face the challenges he needs to face in life to do it.

Although we bid farewell to his G-tube/Gastrostomy tube (feeding tube) in January of 2010, the site in his stomach hasn't healed properly. This has resulted in blood and stomach fluid leaking out of him for the last year. It has been determined that this will not heal on its own and does require surgical repair.

What he has is called a gastrocutaneous fistula, which basically means that the hole never fully closed and is causing the drainage. It has been found that "the incidence of persistent gastrocutaneous fistula is high after gastrostomy tube removal in children. The most important factor predisposing to this problem appears to be the length of time the tube is in place before its removal. Almost all tubes removed within 8 months will close spontaneously." (http://www.jpedsurg.org/article/S0022-3468(99)90008-8/abstract)

Ryan's tube was in for 2 years and 5 months, so due to the length of time his tube was placed before removal, he was at higher risk of developing the fistula. This surgery was scheduled for this week, but yesterday we found out that it had to be postponed due to a respiratory cold/virus over Christmas break. So now the surgery will take place January 24th. We will be working hard at keeping him well from now until then to avoid another postponement. His recovery for this surgery is 6 weeks, with the first 4 weeks requiring strict limitations on any activity "involving his core". Well, if my motherly instinct is still functioning properly I'm pretty certain this is going to be a difficult task for Mr. Super Active without the help of Elmo DVDs. It's hard to imagine telling him to sit still after how hard he has worked to achieve his current level of activity.

Once he gets through that surgery and safely and recovers we will be faced with planning a date for his open heart surgery. Until recently we had been hopeful that Ryan's Atrial Septic Defect could eventually be closed by a procedure that would be less invasive than surgery ("Most of these can be closed in a cardiac catheterization lab (In this procedure, a thin, flexible tube called a catheter is inserted into a blood vessel in the leg that leads to the heart. A cardiologist guides the tube into the heart to make measurements of blood flow, pressure, and oxygen levels in the heart chambers. A special implant is positioned into the hole in the septum and will flatten against the septum on both sides to close and permanently seal the ASD.), although some will require open-heart surgery". http://kidshealth.org/parent/medical/heart/asd.html#)

(Atrial Septic Defect/ASD: sometimes referred to as a hole in the heart — is a type of congenital heart defect in which there is an abnormal opening in the dividing wall between the upper filling chamber, the atria).

Our most recent visit to Ryan's cardiologist revealed that he would likely have to have surgical closure after all, as his ASD has not gotten any smaller over time. In fact, the reports from each echocardiogram have shown a slightly larger hole. This is not because it has been growing, but rather that since he has gotten older and "less squirmy" they have been better able to get an accurate reading on the size of his hole. Initially they thought it to be 9mm and now it's measuring at 18mm...which is really how large it has been all along (it's my understanding that they don't get bigger. In the defense of the echo techs, I'll admit he's a stellar patient now who sits very still for these tests. This was NOT the case when he was 6 months old when they began measurements). The need for cardiac clearance prior to the stomach surgery seemed like the right time to seek out a second opinion regarding his ASD, and the recommended plan for repair.

In November 2010 we saw an interventional cardiologist at the Cleveland Clinic who regularly performs repairs with the catheterization procedure for children who have smaller ASDs, and she confirmed that his hole is too large to be closed without open heart surgery. She suggested that although there are no symptoms causing us to believe that this is an emergent situation, the surgery should be done sooner than later. One reason being that children tend to NOT have long term memory of such events if they are under the age of 5. Additionally growth problems are a symptom of ASD, and a symptom of WHS (Wolf Hirschhorn Syndrome) and the only way to find if he'll grow is by fixing one of them. We cannot take away the syndrome, but we can repair the heart. It may not increase his growth, but there's a chance that it can.

Additionally "if an ASD is not treated, health complications can develop later, including an abnormal heart rhythm (known as an atrial arrhythmia) and problems with how well the heart pumps blood. As kids with ASDs get older, they also might be at an increased risk for stroke, since a blood clot that develops can pass through the hole in the wall between the atria and travel to the brain. Pulmonary hypertension (high blood pressure in the lungs) also can develop over time in older patients with larger untreated ASDs". (http://kidshealth.org/parent/medical/heart/asd.html#)

Of course we've sought opinions about local doctors and hospitals, and have decided to pursue both surgeries at the Cleveland Clinic. Once Ryan has fully recovered from his stomach surgery, we will seek the recommendation of the cardiac surgeons regarding a surgery date for the open heart surgery. In my non-medical mom's opinion he will NOT be recovering over the summer, in fairness to him, Lauren, and Zach (okay, and me) to be able to travel, swim and enjoy the summer to the fullest. It would not be fair to expect the kids to deal with the recovery during their summer, unless it were an urgent situation (especially now that next year Lauren and Zachary will both be in school 5 full days/week).

So I anticipate if the spring is too soon to have the surgery he will not have it until the fall. I have talked to other parents who have children who have undergone heart surgery, and have learned that an ASD is a fairly common repair. This is good news, helpful information, and certainly a relief to hear; but of course I'll worry and will be impatiently awaiting the moment the surgeon walks out to tell me that all is well.

Ryan no longer requires the care of a nurse at home but continues to have an aide who comes to care for him 12 hours per week. This allows time for me to take the older kids to do "big kid" things that he cannot yet participate in, and since he continues to get much of my attention due to his continued need for physical care (getting him dressed, diapers, etc) for a much longer time than a typical infant sibling would have...Lauren, Zachary, and I appreciate this time together. I also get some time to do get things done around the house now and then. Our current aide is an education major and really focuses on teaching him during the time that she's with him. I anticipate appreciating her help even more while Ryan is recovering from his surgeries, as well as the help of family and friends.

Once these medical issues are resolved, I have no doubt that Ryan will make more progress than we have even seen thus far. I truly believe that with his positive social skills, motivation, and eagerness to learn and be a part of the world around him, there is no stopping him. There is no limit to what he can achieve, and I cannot wait to see what else he has in store for us!!

Thanks to everyone for your support and love. I certainly couldn't be as positive and strong as hope I have been for him, Lauren, and Zachary without your love, support, and encouragement. I look forward to updating you with more positive progress over the next year, despite these hurdles.

The book

Well, I FINALLY released my first children's book!! This has to do with Ryan because I was inspired by all three of my children...and of course he's one of them!!!

Specifically he has been a beautiful reminder of how important it is to accept differences we see in others, that if we take the time to get to know someone we will likely have something in common, and that nobody wants to feel left out.

"The Lion on the Dance Floor", targeted for preschoolers, young listeners, and young readers (through 2nd grade depending on child's reading level), delivers these messages in a simple, lively, and fun manner.

I am so excited about this endeavor and that Ryan has taught me so much about being strong and accepting anything that comes my way. Lauren and Zachary are the best older siblings he could ever ask for, and their desire to protect him and help him inspires me too...watching them is a slice of hope for the tolerance and love I wish we could see in everyone.

The book is not a "special needs" book, but highlights common themes all children face such as friendship, overcoming differences, and facing fears.

Check out more information on:

www.theresaliononthedancefloor.com

or order via

www.amazon.com or www.authorhouse.com

ps. Ryan is still making stellar progress. He's now on the cusp of turning 3 1/2 and he's even putting words together now (OK Momma, bye bye elmo, bye bye big bird, etc)...not to mention that he's identifying colors really well. Yes, I am a proud momma!!!! More to come.

Good-bye feeding tube

On August 29th, 2007 we had no choice but to follow through with the surgery to have Ryan's feeding tube placed in his tummy. He was 10 months old, and simply could not sustain himself on the very small amount he was eating and drinking. The temporary NG tube in his nose was no longer a good solution for him either, since we knew it would be a longer term issue. So as Lauren and Zachary went to the outer banks to enjoy a trip with Grandma and Papa, Ryan made another trip with mommy and daddy to Akron Children's hospital for the surgery.

Although we hoped that it would only be temporary, there were many days that it seemed like he would never eat and drink effectively enough to let it go. It wasn't the end of the world, and we are thankful he had this as an option to provide the nutrition that he needed . Yet we are EXTREMELY happy to report that on January 16th, 2010 his feeding tube became a thing of the past!

In my last entry I mentioned we had planned to keep it in throughout the winter and basically use it as a security blanket in the event he got sick and needed extra nutrition or hydration. Well, on the 16th it came out accidentally. By the time I found it on the floor it had been out long enough that I was not able to put it back in (as I had done many times before), at least not without forcing it in. The option at that moment was to take him into the ER and have it placed , checked to be sure it was positioned correctly, and that no damage had been done by putting it in with more force...or keep it out. We decided that fate had stepped in and was trying to guide us in the right direction.

Despite encouragement from the on-call GI doctor to have it put back in, we decided that Ryan had proven his ability to eat and drink on his own, so we left it out. A moment we had hoped and waited for since the day it went in, sometimes patiently and other times not.

The doctor had still planned to use the feeding tube to add more calories to Ryan's diet if he were to lose weight, or stop gaining. This seems logical for most people. Certainly for me, the more calories I eat the more weight I gain. Not so for Ryan. Gaining weight somehow doesn't correlate with the amount of food and calories that he eats.

We are confident that he is eating a well-balanced diet on a daily basis, and he even takes in more calories than his older brother Zachary (who has become a rather picky eater) at this point! Ryan still won't drink milk, any flavor, any type...but he eats yogurt, cheese, cottage cheese by the buckets it seems. He gets calcium in many ways and we continue to introduce milk hoping he'll start to drink it someday.

Overall, he continues to eat and drink like a champ and it's clear that we made the right decision. He continues to blossom in all other areas as well. His speech and sign language are progressing quickly and becoming easier to understand for people other than me. He loves his school and continues to thrive in the preschool program there. There has certainly not been a decrease in his activity level. He has started running full speed with his walker, and can successfully (and very unsafely) climb and descend a full flight of stairs.

Well, until next time...things are looking great here! We are thankful for every moment with him, Lauren and Zachary and blessed in many ways.

Hopefully we will have a new video to post soon so you can see all of his progress yourselves!

Feeding tube progress

Well, everything Ryan said in the initial post was very true...and I wanted to step in and give you an update! He mentioned that hopefully the feeding tube would be a thing of the past within a year if things went well, which seemed like a realistic and hopeful goal at that time.

Yet we are absolutely pleased to report that Wednesday will celebrate three weeks of Ryan eating and drinking on his own, with no tube feedings!! Thankfully during that time he's also become a more effective, slightly less messy eater! He's also not waking up at 4 a.m. asking to eat quite as often either, phew!!

We do continue to give him 4 ounces of water via his feeding tube at night to assure that he gets a little extra hydration...but we are hoping that we can stop that soon too. We do this while he is asleep and unaware of it so that there won't be the risk of additional emotional attachment to the tube feedings. The water going through the tube is also a good way to keep it clean and avoid infection. We do not plan to have to resume tube feedings but we will not remove the tube from his tummy until we are certain he's not going to regress. Additionally, if he were to get sick and need additional hydration we would have the ability to do that, and so we'd want to wait until flu/winter season is over anyway.

When it's ready to come out it will just become a tiny scar, and a distant memory of the medical technology that helped him survive and get to where he is today.

The decision to do this came about when Ryan began drinking effectively out of a straw. It was difficult to know when and how to begin the process, but evident that he was becoming somewhat emotionally attached to it as one might with a bottle or pacifier. Also the tube feeding was faster and easier for him and often times he would just point to where we hang is feeding bag, and ask for us to hang it so he wouldn't have to put the effort into eating. He is smart enough to understand this, and with each passing day we knew it'd be a harder habit to break.


My research had told me that "so many children who are capable of eating on their own, whose core issues have been addressed but who remain *unwilling* to eat, are tube-fed for years, which needlessly and often dramatically lowers quality of life."

This hit home with me and I knew that since he had become 100% capable of eating AND drinking, seems to feel and respond to feelings of thirst and hunger, and was eager to eat and be part of family mealtimes that it would be unfair and limiting to him to continue the feedings.

I had also read that over time if parent/adult expectation and pressure to eat independently build up too much that it can cause a child to resist autonomy, and that "since giving tube feeds can provide attention this can result in a secondary gain. We really wanted to avoid this situation.

We couldn't be more proud of him. We are quite thrilled about the 3 ounce weight gain he has had since last week!! After last week's weigh in he had lost an ounce, and the doctor mentioned the possibility of re-starting tube feedings if he were to lose any more weight (even one more ounce). This, quite simply, would be heartbreaking. We knew we'd have to stand firm and make sure parental instinct was fully in tact, because we had no plans of re-starting tube feedings...regardless of what that scale prounounced or the doctor had recommended!!!

As long as Ryan remains healthy, hydrated, eager to eat and drink, and maintains appropriate response to hunger and thirst...it would be unfair to let him turn back. Especially when he is now fully capable of moving towards the independence he surely desires!!

He continues to remain strong and walk well with a walker. I learned today that his physical therapist is starting to work with him using a quad cane (cane with 4 prongs on the bottom)...wow, I am eager to see him progress to that on a regular basis!


Well, thanks for listening and I know there'll be plenty of exciting news to follow!!!

The brief explanation...

I was born in October of 2006, and while I was inside my mom there were some concerns about how slowly I was growing. Those concerns were attributed to a complication with my mom's umbilical cord (Occasionally, one umbilical artery is absent. Single umbilical arteries are associated more commonly with fetal anomalies than normal cords.)

So anyway I was small and had to be monitored closely throughout the pregnancy to be sure I didn't stop growing. Thankfully I didn't have to be delivered early and was born at 39 weeks, via repeat c-section. I weighed 5 pounds 4 ounces and that wasn't much smaller than my sister had been. Therefore, nobody seemed too worried about my size once I was born. The doctors thought that since I was "disconnected" from the umbilical cord I would begin to thrive...but they were wrong.

By the time I was 4 1/2 months old or so it became obvious that my lack of growth was more of a problem than "just another small kid in the family" (my brother and sister are both small for their age, so we all just assumed I was following the family's growth curve). Yet I looked just like my brother and sister, and there were no indicators that suggested any specific problem at that time.

So I was diagnosed generically as "failure to thrive" because I wasn't growing like I should. My mom quit nursing because she thought that maybe her breast milk wasn't providing enough nutrition. It was a difficult transition because my tummy didn't handle many of the formulas well, and I had a very hard time sucking on a bottle like other babies did. (Looking back, my mommy says that I actually ate the best while nursing but she was unsuccessful at restarting her milk once she stopped nursing). At 6 months old I was hospitalized for the first time, and the hunt for the answers and reasons for my struggles was in full force.

After several hospitalizations, a feeding tube, home oxygen at nighttime (temporarily), doctors from many, many specialties, questions, tests, and second opinions...we learned that I have a small missing piece of the short (or petite) arm of my 4th chromosome. This is also called Wolf-Hirschhorn Syndrome, or 4p- (4 for fourth, p for petite, and - for deletion or missing piece). It took two rounds of genetic testing to discover this, because the missing piece is very small and wasn't detected with the initial chromosome analysis.

Some of the milder cases are only being identified more recently, with better testing. Even in 2007 we had to push hard to find a doctor that felt further genetic testing was warranted, and fight the insurance company to have it covered. Thankfully we had a therapist involved that knew "standard testing" wasn't a catch-all. Had she not armed us with this information we may still be searching for a diagnosis. After receiving my diagnosis, my parents were also tested. It was found to be something that happened randomly. This means that my parents are not carriers, and we have no family history.

My parents and I thought that having a diagnosis meant having answers and that we'd be able to easily move forward with a team of doctors/specialists for "this type of thing"...but again we were WRONG.

It has been a difficult road because most of the doctors that we have met along the way have never even heard of the syndrome, and we have found that much of the research and literature is outdated. This has made it somewhat difficult to move forward at times. Even if someone takes the time to read about and research the syndrome, it still may not tell them a lot about me specifically. My parents have become great advocates on my behalf and searched tirelessly for doctors that can best manage my care. They have also sought out support from parents of other children that have the same syndrome.

The doctors that have a specialized background in genetics have been very helpful. Yet overall as long as a doctor is open minded, and willing to learn from and listen to my mom and dad's input it gives them a better ability to help me. They do know me better than anyone afterall!!

We have had pretty good luck in narrowing down the most helpful team within the last year. I do have something rare, but my parents can provide a wealth of knowledge that should always be heard and considered in treatment and planning. So we have found, and respect, doctors that can move forward and treat my symptoms to the best of their ability, while not becoming overwhelmed by or "hung up" on the syndrome itself.

Through it all my mom and dad have found MANY things to be thankful for, besides the fact that I am a cute and sweet bundle of joy...most of the time! I just turned three, so you know how that goes!!

They are happy that they got to know me before the diagnosis. By the time they got the diagnosis I was almost one year old and when they were told I would never walk, never talk, and never get past the cognitive/mental level of a 6 year old they simply didn't believe it. The way I had already progressed by that point, despite being very weak and frail, made them believe in their hearts that prognosis wasn't true. I thank them for treating me as Ryan, their son, and not the boy with the syndrome...and for not accepting the limitations that were handed to them along with the diagnosis. They expect a lot out of me, and they should! I am capable of more than anyone can predict, and I am glad that they can seen that in me!!!!

I have heard them say many times that if I had been their first child they might have been too nervous to take me places and do things with me outside of our home (they tell me when my sister, the first child, was born that they made people wear surgical masks if they had even a hint of a cold. So I guess I can imagine that they might have been uncomfortable taking me out with a feeding tube, and all of the other things they have encountered since my arrival.)

So having no choice but to take me along with the family and get out there and do things with the other kids was a wonderful gift, because I have learned SO much from them and from the outside world I have been able to experience because of them! My brother and sister motivate me more than anyone in the world (sorry mom and dad, but it's the truth). I can hardly contain the excitement I feel when they include me in their activities, and want nothing more than to do the things they are doing. I have no doubt in my mind that their presence in my life will lead me to places I may never have gone on my own.

Another truth is that some days they are probably pretty sick of me and sick of my mom having to spend extra time with me. It's okay with me though. I know that we all have bad days, and frankly some days I am sick of all the appointments and therapies I have to do too...so who can blame them! Even on those days, the love in their eyes never disappears. I can always see it there, even on a bad day, and that's what reassures me that I landed in the right family. I am loved deeply and truly by all that surround me in my family. That too will carry me further than anyone might expect...you just wait and see!

My parents always speak of friends and neighbors that have helped them through the toughest of times, other friends that have children with special needs or disabilities...and ones that don't. They have also made new friends via the support group that they found on the Internet for parents and caregivers of children with 4p-/WHS. Without the Internet, easily accessible information, and access to other people not geographically close by, I don't think they would have known what to do. The parents of other kids with Wolf-Hirschhorn Syndrome have been so helpful and supportive people thus far, as they have first hand knowledge of things we have faced or may face in the future.

My mom is a social worker and has seen her share of things while working in that field, but she says that even though she has a Master's degree and years of experience in social work, strong support from family and friends, and access to resources she has still become overwhelmed at times. Overwhelmed with which resources are available and figuring out what I qualify for, managing time and appointments, devoting enough time to my brother and sister while taking care of my needs...and she now has a new perspective from which to view the difficulties and struggles that other people encounter. Especially for those people that face struggles and do not have support, resources, or education...or struggles that are more difficult than mine on any level. This, she has said, will make her a better person and definitely a better social worker. (Again, thanks to me!!!)

The list goes on and on, but they feel very blessed that I am the one that completed our family. My older brother and sister are thrilled to be learning sign language so they can help me learn it too. They seem to be caring and understanding of others with differences or special needs, even at their young ages. They are what motivate me and bring me joy (along with music of course!). So the three of us will venture through this life together, and continue to make mom and dad proud (and most likely frustrated too!!) as we all grow, change, and succeed.


What the future brings is unknown but right now (There is a large degree of variability between patients with this syndrome. Some are near "normal" in appearance and mental capacities, others are not. This is due to the amount of material that is missing in the p arm of the chromosome and the exact genes that are missing).
I am still very small, but after having my tonsils and adenoids out when I was almost two my life has changed for the better in SO many ways!!! I grew over three pounds, I sleep wonderfully, all of my food intolerances disappeared, I became mobile, progressed with eating foods orally, am no longer chronically congested, and SO much more!!!

I am working tirelessly in Physical therapy, Occupational therapy, Speech therapy, Hippotherapy (therapy on a horse), music therapy and the preschool at the local Board of Mental Retardation and Developmental disabilities (MRDD). Mom recently met with the public school district to discuss my IEP (individualized education plan). For now I will stay in the school where I am currently, but we have a wonderful public school system that has a great special education reputation. I will transition there later, as I get closer to kindergarten. By that time I expect to be walking much better, and have better communication skills.

A few months ago I began to walk with a walker, and have made so much progress that my mom even takes the walker out and about now. In fact, today I walked through the local grocery store and trick or treated!! Boy was that fun! I still cannot walk very far, but I am getting better everyday. I know about 15 American sign language signs, I can say 4 words and I scoot around on my bottom faster than anyone else I have ever met. The other kids think it's silly sometimes, but when they get down and try it they can never keep up with me!

I LOVE music, water, going on rides in the wagon, swinging, dancing, playing with other kids, and experiencing the world around me as much as possible. I still see a lot of doctors, but thankfully I am doing so well that I only have to see most of them once a year to check on things....especially to make sure my kidneys are still growing and functioning properly, that I am not having any abnormal neurological activity, and to monitor the size of the hole in my heart as I get older. I still have a feeding tube, but have been continuing to progress with eating things orally. I have heard my parents say that if I could just drink as well as I eat that I could get rid of that tube! So we are working on it, and perhaps a year from now it will be something of the past for me.

I am very social, interactive, alert and observant. Lately I have discovered the art of throwing a tantrum, but being a kid wouldn't be the same without that would it?! I am sure I will grow out of it...or at least that's what my parents are hoping! Other than that I am a pretty happy guy.

Well, that's the short of it...my mom will keep you posted on my progress from here on out!!