Picture Update - My Favorite Kind of Post

Hi Mom

Hip Hip Hurray

I Love to torment a sleeping dog....poor Hunter

First time playing weapons with the Big Guys

He decided his head needed protection.

Loves to put things away.....or hide things

Arghhhh....going to go destroy some towers.

New thing is standing on the couch.....give mommy a heart attack.

Painting with food...they call this therapy.

Mom taught me to clean my hands on my socks.

Checking out this Oreo.......

It's going in.....

If only I wasn't afraid to swallow.....the taste is great.

And I was awarded a pillow for sleeping....thank you Croup.

Walking More: A little discussion on late milestones

I have talked before about milestones and how it is different when you have a child with Down Syndrome.  There is a magical chart that shows when children with Down Syndrome roll, sit, walk, talk, etc.  So the good news as a mom is you know it is going to happen later than a typical child you know it will be around 2 years old.  That doesn't mean you understand just how long walking takes.  David pulled to stand at 18 months old, cruising furniture by 21 months old, and he has been taking a few steps since then.  Now at 26 months, he still butt scoots alot, he will walk anywhere if I hold his hand, but just this week he started walking farther on his own.  Just maybe we are approaching a true walker. But honestly, on David time, full time walking could be next week or in 6 more months.  For now I wanted to share this video with you of him walking (and a little blurb of "thumbs up", during a tube feed on our last road trip).  

By the way when you have a late milestone the excitement around the milestone is crazy. Zac will hear us clapping sometimes for David and he is like what did he do. Sometimes the answer is he stood by himself for 30 seconds, or he climbed on the couch for the first time without wearing shoes, or he signed "down" and said it at the same time; and we all cheer for David. Zac is so excited when his brother does something new, at 6 he gets it. He understands that things are harder for David and more work and he celebrates his brothers achievements no matter how small it would seem in a typical family. Can you imagine being happy if your child started walking at over 2 years old, yeah it is a strange world I live in where this is my typical. I say strange because it is odd, but it is not sad.  Before having David I would have felt sorry for someone who's child wasn't walking by 2, but I don't feel sad for me.  It really is our normal and when you are living life in the moment you don't feel sad about these kind of things.  Excited, hopeful, jealous of someone else's child with Down Syndrome walking at 18 months (that is a hard pill to swallow), but not really sad.  It is hard to explain, so just share a little Lund excitement and watch David walking in the video above and have a really great day.

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This is Feeding Therapy

2 Years Old Checking In

Looks who's two

David turned two so I thought it would be a good time to get on here and update anyone who still follows my blog.  We are busy with our regular lives.  Probably not the same regular as some of you, but our regular.  Mom and Dad work Zac is in Kindergarten and David goes to a regular Daycare. 

After surgery for tonsil and adenoid removal

Lets start with David's health.  This winter was amazingly easy compared to last year.  He was rarely sick and when he was it was for just a few days like a regular cold.  What a change a repaired heart makes.  We have not gone to the pulmonologist at all since David's heart surgery.  His last cardiology appointment was confusing so we will just follow up in 6 months and see what is really happening over time.  We experienced our first sleep study which was awful.  David screamed for the first two hours and they didn't even put all of the leads on him until he finally fell asleep.  The results were central and obstructive sleep apnea. 

This led to David having his tonsils and adenoids removed while getting new ear tubes (his others had displaced) and a sedated hearing test. The good news is he passed his hearing test even though previously we were told he had permanant hearing loss.  Another common down syndrome thing is the canals are so small that even doing the sedated test that tests brain response can be incorrect due to the small ear canal size.  Also the ENT thinks his ear canals have grown considerably and this could be our last set of tubes, but only time will tell.  The tonsil and adenoid recovery was terrible.  He signed "hurt" and pointed to his throat, at least we know he can communicate pretty effectively when necessary.  We are now four weeks out and fully healed but it was a lot of sleepless nights. 

Phoenix Childrens Hospital

Eating still is not happening.  Part of the tonsil removal is hoping it will help with swallowing and speech.  We will see if his eating improves in the next couple of months.  He is still 100 percent tube fed.  Although he tastes foods and puts some food in his mouth he does not consume enough to count as any calorie intake.  He gags on swallowing the smallest bite.

Trying the icing

Speech is minimal.  I would say his words are dada, mama, dog, Zac, ball, hi, and bye (and I swear SpongeBob).  He makes lots of animal sounds, his roar is adorable.  Signing has seen the biggest improvement.  We don't realize it until we are talking and he signs the correct word when he hears it.  He also signs while looking at books or the newspaper or while out in the stroller.  I think he has 40 to 50 signs in his array.  We have ordered more Signing Times DVD's to add to his vocabulary and ours.  It makes me sad to think of how in the old days before sign language people would have just assumed he was not very smart because he could not talk.  When you see him point to his shoes and sign the word or sign ball and then throw you the ball it makes your heart melt (you say to youself, he gets it).  Speaking will come in time and we speak and sign to him and encourage his words as well. 

Watching Signing Times

Walking...will we ever get there.  He is making huge improvements.  He can walk holding one of our hands.  He is starting to stand in the middle of the room for a few seconds.  He can take a few steps.  He crusises like crazy, rearranging the furniture to move throughout the kitchen.  He can even cruise a flat wall.  He recently got SMO shoe inserts that go up over his ankles.  He doesn't mind them and wears them every day.  He still does not crawl.  His mode of transport is a butt scoot and he is super fast.  He goes right out the doggie door in fact, across the landscaping rock, to the grass.  He is an escape artist already.  He is also a super climber.  He loves to get into chairs and slide on them.  He just learned how to climb on to the couch which is amazing based on his small stature.

Our favorite family outings are to the zoo, as that is our thing.  David loves animals at the petting zoo and loves to make animal sounds.  We even bought the Signing Times videos for farm and zoo animals to encourage his love of animals.  Zac has always been an animal lover and Steve and I were known to go to the zoo numerous times even before we had kids.  He grew up going to the San Diego Zoo and I grew up going to the Toledo Zoo, both great zoos although one is a tad bit more amazing than the other. We go to the Phoenix Zoo (we are members).  The picture below was taken at another regional park called Bearizona. 

Petting A Goat

Feeding Tube Awareness Week Begins



David rockin his scar from open heart surgery and his cool g-tube

Interesting links about feeding tubes:

www.feedingtubeawareness.com

Roger Ebert's blog about tube feeding.  Yes, he has a feeding tube.

Feeding Tube awareness Video 2012 my boys are at about 44 sec

Feeding Tube Awareness Video 2011 David is at about 1 minute

David October 2010 with his ng feeding tube

Signing More: Swinging Times

A New Year: What is David Like at 20 Months

Yes, he loves the boxes

Even sitting on the boxes

David's gross motor skills: Last Christmas he was just starting to sit for a few seconds if you propped him up like a tri-pod.  At his birthday in April he was able to get into a sitting position by himself and could sit forever. At 18 months he started pulling to stand and climbing into chairs (on the same day).  And at 20 months he pulls up on everything and cruises furniture like a champ.  He will walk if you hold his hands.  He loves to be in a walker and a jumper at home, we believe they strengthen his legs and give him standing perspective.  And his favorite way to get around is the butt scoot.  He is not a crawler at all.  He is lately enjoying pushing his butt up into the air into a downward dog yoga position as well.  He has his favorite spots to go to in the house when he butt scoots....the front door, the bathroom, Zac's room.

David's speech is minimal, but we can't ignore progress there either.  He has a handful of words but is pretty much stalled. He signs a few words and knows a few body parts.  He says dada, mama(sometimes), dog (a lot), Ac (for Zac), Unter (Hunter the dog).  He signs dada, dog, more...he will not sign mama.  He loves to do the finger play Itsy Bitsy Spider. 

Fine motor skills: He is pointing at things (sometimes with his middle finger). He waves at virtually everyone (but that would be social skills).  He can pick up any speck of dirt you see on the floor (luckily it does not go in the mouth).

Social skills: David's a master of this category.  He likes everyone.  He is known to turn backwards in his high chair at a restaurant just to engage the people sitting behind us at many tables at once.  Everyone knows him at our favorite restaurants, the grocery store, the coffee shop, etc.  Everyone is a potential friend to David.  He has no separation anxiety, in fact he loves to go to daycare.  He has had some setbacks with the medical community since open heart surgery, but we have found if you don't make him lay down he does much better at his appointments.  He has a smile, wave, and clap for most everyone.

Medically: One repaired heart.  Still g-tube fed.  Until heart surgery, he would not tolerate formula any time he got sick (even with a cold).  He was on pedialyte for so long his weight hovered between 14 and 15 pounds until summer.  At surgery time it was 17.5 pounds and just last week he weighed in at 20 pounds.  He has always been tall (for a boy with down syndrome) and measures 31.5 inches.  He has ear tubes, and possibly some minor hearing loss in one ear.

Eating: This one has not changed much, but we feel his interest in food has changed since surgery.  He wants to taste most things.  He prefers salty foods like McDonald's french fries, Ritz crackers, Sami Sam's sauce.  We are hopeful that someday he will eat but I can't tell you when. He is 100% g-tube fed and I can't tell you how much is habit or in his head or physical ability or desire for food or association with food and feeling full.  It is a big mystery but slowing being solved.

TV - Not really interested.  Watches a tiny bit of Sponge Bob (thanks big brother), a little bit of Mickey Mouse, and a tiny bit of Signing Times videos.

Toys - Loves music.  Drums, keyboard, more drums.  Any two objects hit together can make music.  He likes balls.  He likes cars, he even plays with them the right way rolling them down the hallway.  He is starting to put toys into things but still prefers to throw them behind his back.  He likes to shove things under the bathroom door that is shut, sometimes you can find a sock or a hot wheels car when you open the door.  He loves, loves, loves, loves to play with shoes (other peoples shoes). Dad's shoes, mom's shoes, Zac's shoes, the therapists shoes, shoes at other peoples houses and he knows they go on your feet.  Oh my gosh, I forgot to mention the bat.  He has a plastic bat and he loves to hit stuff with it.  I like to think it is hearing the sounds but sometimes I think he just likes to hit stuff.

Books - He is starting to love books.  He will let you read to him for a long time.  He likes the lift a flap books.  He likes the touch and feel books. He likes little books.  He likes big books.  This is starting to sound like a doctor Seuss book.

Baths - He loves the bath.  Hated the baby tub but has loved the bath since he can be in it like a big boy.  They don't last too long, once he starts pulling on his g-tube his bath is over.  He has only pulled it out once this year but that was enough for me, I practice avoidance on that topic.

Teeth - He got 4 molars at 18 months, those were his first teeth.  Yes, just another way Down Syndrome can change how things work.  He just got one front tooth last week and is getting his other one right now.  It looks like there are far more coming in as well, he may just have a full mouth by 2.  I am trying to get a good teeth picture, they are either blurry or he looks crazy.  It is hard to get a child to show you their teeth.

Zac, at 5 you just really want to make your brother laugh.  Did I mention David's laugh, sometimes he snorts.  You know people that snort when they laugh, that is the ultimate true laughter (would you ever do that on purpose, it just comes out and you can't stop snorty laughs).  Anyway, back to how David makes others laugh.  He either a) hits himself in the head and then chuckles or b)teases with toys (he will pretend he is going to give you something and then pull it away with a grin.

Mom's thoughts on Down Syndrome - I have never once regretted bringing David into this world, I had a pre-natal diagnosis, he is amazing.  I have been sad and scared about his heart and lungs. It has been a very hard year medically.  But I don't worry about his delays.  I don't worry about his future, too often.  I do worry about how others will treat him.  I worry about if he will be ready for school when the time comes, hell when Zac was 20 months I could not have pictured how awesome he would be at 5.  Our family has so much love for David, he brings us joy every day.  We cheer with each attempt at standing or tasting food - you would think he scored a touchdown the way our family cheers over a lick of a pretzel or cracker.  I love this little guy with all my heart and all my soul just like a mother loves any child (well maybe a tiny bit more).

One Year Ago - Same Smile

One Year Ago - My Favorite Santa