Matthew's 8th Haircut

"What an adorable little girl!" That's what I probably would've heard had I waited until Matthew was a year old to get his hair cut. And if I waited until this month, he would probably have shoulder-length hair.

He was born with a head full of hair. Some babies who have hair at birth, lose the hair at some point and regrow new hair. Not Matthew. His just kept growing longer and thicker. He didn't lose any of it. He had 3 haircuts at The Classic Comb, a salon in town, before his first birthday. To date, he has already had 8 haircuts. That's a few more haircuts than a little boy OR girl his age would have had, isn't it?

At the salon, I always have the cape around me and him on my lap without a cape (he dislikes it). We end up with cut hair all over him and just a little bit on me. He doesn't really mind the hairy situation but I don't want the hair in his carseat so I have always brought an extra set of clothes to change him into before we leave the salon. Seven times, we did that. Finally, at his 8th hair appointment, I think I have a solution to keep most of the hair off him. I had him wear one of my shirts.

Ta-dah! Worked like a charm.

Book Review: Windows into Heaven - Stories Celebrating Down Syndrome

I borrowed this book from the Down Syndrome Association of Greater St. Louis (DSAGSL) since our local library did not have it. Edited and published by Stacy and Michelle Tetschner, it is packed with positively uplifting experiences from families and individuals who have a child, grandchild, friend, or acquaintance with Down syndrome. As described on their website, "Windows Into Heaven is a collection of stories of inspiration, love, and acceptance from those families and individuals who have been positively touched by Down Syndrome."

Every single story in this book moved me to tears - joyful tears. I reminisced and empathized with some stories about how the family's journey began. I reflected on how much Matthew, who is only less than 2 years old, is already touching the lives of family and friends, near and far. I daydreamed about the possibilities in our future and where our journey with Matthew would take us.

I'll be recommending this book to our local library. I've also added it to my wishlist to own someday. In my opinion, the book is a great positive resource for parents beginning their journey, for families already on this road less travelled, for relatives and friends travelling alongside of them, and for people we may meet along the way.

Have you read it? What do you think?

Down Syndrome Gene Could Fight Cancer

The Boston Globe published A Medical Puzzle Yields Cancer Clue - Downs Gene Starves Growth of Tumors on June 1, 2009. The news article reports this amazing groundbreaking discovery saying:

"...their discovery could provide a beacon to scientists developing treatments and preventive medications designed to be broadly effective against cancer, wherever it resides in the body."

"The scientists discovered that the extra chromosome carried by people with Down syndrome - which causes the condition's distinctive features - harbors a gene responsible for starving tumors of the blood they need to survive and flourish."

"...these individuals with Downs potentially hold a secret that might lead to quite substantial and revolutionary new treatments for cancer."

Note that this significant finding connects the Down syndrome gene to possibly developing treatments and preventive medications to solid tumors, excuding leukemia, which is a blood-borne cancer.

Cancer is hereditary in our family, at least on my dad's side of the family. Two years ago, my grandpa (my dad's dad) in the Philippines was diagnosed with stage 4 colon cancer and passed away a few months later. I found out about his diagnosis via an overseas phone call from my dad, which was coincidentally the same day that I found out I was pregnant with Matthew. The fact that I got happy news and sad news in one day doesn't indicate anything but pure coincidence. But because of the diagnoses of cancer and Down syndrome with two people near and dear to me, this news article struck a chord with me.

I look at Matthew and remember what my aunt had said when he was born: "Matthew has yet to touch so many people's lives in the many years to come!" I never imagined that one of the ways could possibly be through genetics, with the potential to alter the medical landscape for cancer treatments. That is simply incredible!

Toy Review Tuesday: Step 2 WaterWheel Table

Summer's here! The best toys for the summer are mostly ones that squirt water, hold water, splash water, or anything water. We got this Step 2 WaterWheel Play Table for Christmas last year and we're excited to finally have it out for the summer. A few other versions of this water table include the Sand and Water Transportation Station and Arctic Splash Water Table. There are many more choices on amazon.com but we liked this one because of the simple design and the fun waterwheel. It comes with a 2 boats, a cup and a waterwheel tower.

I like that the table elevated and at a perfect height for my 19-month old to play comfortably. Not only does he have fun playing with water, he also gets to practice standing. Sometimes I notice that he does not hold on or lean on the table for support for a few seconds! It's also sturdy enough for Matthew to pull up on and lean on, yet light enough for me to lift (without water in it of course). Matthew's too little to pour water into the bucket above the waterwheel right now but he can manually spin the wheel and watch it go. I'm sure he'll have fun pouring water into it when he's tall enough to reach the top of the water tower. The table is big enough to accommodate 2 or 3 toddler friends. Anyone want to come and play? Be prepared to get splashed though!

I do wish the table had a plug at the bottom of the basin to make it easier to drain the water. But I suppose it's light enough anyway that it's just as easy and quicker to pour the water out.

Overall, I think this is a great deal for what we paid. I have also used this for snow in the winter. I set it up in our kitchen. Matthew wasn't interested in the snow but our indoor cat, Yuri, sure had a ball! The table is great for kids and pets!

In the photo below: Father and son love water. Matthew is having fun at his water table while Daddy cleans his scuba diving gear.


Approximate retail price as of today: $29.32

About 'Toy Review Tuesday': Every Tuesday, I write about our experience with a toy, while trying to incorporate thoughts on how it may help a child with Down syndrome. This review is not to be construed as an endorsement of the product nor do I intend to put pressure on parents to purchase the toys reviewed. Questions, sharing your own experience, or any other helpful insights are welcome in the comment section.

ENT Appointment - Surgery?

So here's an interesting fact that I learned today: the adenoid, once surgically removed, CAN grow back in some cases. Tonsils don't grow back when surgically removed. We had an appointment with Matthew's new ENT (Ear, Nose, & Throat) doctor today.

Checking Ear Tubes and Tonsils
Bill took the day off work so he could come to the appointment and help hold Matthew down when the doctor checked his ears. I was holding his legs down, Bill was holding his arms down and a nurse was holding Matthew's head in place while the doctor scooped out wax from his left ear. Needless to say, Matthew was very upset about being restrained. Upon inspection under the microscope, the doctor discovered that the ear tube in the left ear had already fallen out so that was scooped out too. There is now a hole in Matthew's eardrum where the tube was set. It may or may not heal on its own but the doctor said that hole will help with drainage and function as if the ear tube was still there. So at the moment, the ear tube does not need to be replaced.

After checking the ears, the doctor checked his tonsils. Yup, they are indeed large. We told him that Matthew snores too. Sometimes, we sometimes hear him gasp for air (sounds like it) over the baby monitor. And when he was younger, he used to wake up in the middle of the night, coughing and congested, but not sick. He'd just have a hard time breathing because of the congestion, yet he did not have a cold. Could he have developed allergies? The doctor explained that it's not usually the case for kids in his age range. Bouts of congestion like that are usually viral-related, he said.

Possible Solution to Breathing Issue - Surgery?
He suggested that a sleep study was an available option for us if we were very worried about Matthew's breathing at night. Possible apnea? At the same time, he advised us that kids Matthew's age usually yank off the wires that they would attach to his body from the apnea monitor. We won't get accurate results, if any, that way. So maybe watching him sleep at home might be better to see if there are any lapses in his breathing.

Because of his occasional breathing issues and large tonsils, Matthew is a candidate for tonsilectomy (surgical removal of tonsils). And because 50% of the time, removing the tonsils isn't enough to clear the airway for kids with Down syndrome, he would need to remove part of the adenoid at the same time. The procedure starts after 45 minutes of being under anesthesia. The surgery is done through the mouth. If we opt for surgery in the next few months, he will need to stay overnight at the hospital after surgery for monitoring since he is under 4 years of age. Throat pain usually lasts 1 to 2 weeks after surgery. We are to expect having a hard time getting Matthew to drink during the recovery period. And no travelling while he is recovering.

According to our ENT, (approx.) 90% of kids without Down syndrome, who undergo this type of surgery, do not experience any recurrence of their breathing issue. But for (approx.) 40%-50% of kids with Down syndrome who undergo this type of surgery, another breathing issue may surface, possibly caused by other factors. (unknown to us at this time. We can't tell what Matthew's future is going to be).

The decision for surgery, even if it is a relatively simple one, is not easy for us. It's still surgery no matter how minor. We're going to bide our time and see how he does over the summer. Maybe we'll even wait until he's 4 years old. In the meantime, we'll continue with our nightly routine of warm baths in a steamed-up bathroom, saline solution and using a bulb to clear his nose, and a cool mist humidifier in his room at night. We'll see this ENT doctor again for a follow-up visit in approximately six months. We liked how he answered our questions and provided possible courses of action. We also noticed that whenever he said "normal children", he immediately corrected himself saying, "children without Down syndrome" and then finishes his sentence. Hey, at least he's trying to be sensitive about his choice of words.

Bill and I are now wondering about experiences of other parents who have opted for this type of surgery for their kids, with or without Down syndrome. Also, we are wondering if there are older kids/ adults that have not had their tonsils and/or adenoid removed. Do they or their parents wish they opted for surgery earlier or maybe even regret it?