2.5 Years Old

 

Long time without an update on my little man.  He is doing awesome. Since his birthday in April he has only had a few colds.  The worst was when we did mommy/me swim lessons which I loved.  He got sick a lot and I am wondering if he was aspirating the water because he drank a lot during lessons.  He did awesome and it was fun, but we stopped in September and will try again next Spring.

 

 

And since I posted in June about his beginning to walk he pretty much walked non-stop ever since that first video.  He is trying to master opening doors and thankfully he cannot.  Unlike Zac who would never leave our side, David will just take off.  He is starting a fast walk and it is not the most elegant gait, but it gets him everywhere.  We are working on walking on different surfaces, kicking, and jumping which are still difficult for him.  He rarely butt scoots anymore and will almost crawl under my legs like a tunnel, but still really hates crawling.

 

He is still a climber and falls off of the arms of chairs periodically.  He climbs up the step stool.  He climbs into the stroller.  He has no fear of heights, unlike my dear Zac who at 6 is still afraid of heights.



 

The two pictures above he is signing"color" "writing" which means "crayons". He now has over 100 signs.  We began signing last Christmas.  He is really good.  Sometimes you don't know he knows a word until he is listening to your conversation and signs a word you just said.  You might also notice he is left handed, he signs with his dominant hand.  So both of my kids and my husband are left handed.  I am right handed which makes teaching things a little difficult.

 

Just recently his speaking has begun to take off.  He will mimic everything.  He also will sign and speak the word at the same time.  We had a brief period where he would only speak words he didn't know the sign for.  I was considering stopping the sign language, but within two weeks he started saying the words he signs.  He will parrot most things you ask him to say.  I can understand most of his words, others may not be so fortunate. We are going to try Kaufman cards for speech therapy.  It is a method for kids who have apraxia (word approximations) the therapist thinks it might help him speak more clearly.

 

Books, books, books...his favorite activity by far.  Give him a toy and he will use it as a bat or throw it across the room.  Give him a book and he will go through each page or sign for you to read it to him.  He points to all the pictures and signs the pictures he knows.  We read every day.  I do flash cards with him once a week.  He watches a signing video every morning while I get ready for work.  I foresee an IPAD in our Christmas/Chanukah future most likely this winter.  I am not an apple fan, but when it comes to apps for special needs apple wins hands down (frown).

 

He loves balls.  Especially football.  Zac was exactly the same.  They love to play catch.  And I might encourage it a little as it is one of the few toys your are supposed to throw.

 

David attends a typical daycare, he is in the 2 year class room.  He loves it and the teachers and parents and kids love him.  He went through a biting phase for a week.  He was getting another tooth and it was really bothering him.  Tooth count is 4 molars, 3 top front teeth, and 2 bottom front/side teeth.  His teeth look weird, but he won't let me get a picture.

 

Eating is not happening. 100 percent tube fed, and lately doesn't even want to try food for me. We are increasing tube feeding to gain some weights (he needs to gain 4 pounds he is only 23 pounds). We need to then evaluate what is going on with his swallow. More testing may be in our future and possibly a therapy called vital stim. Until his weight is where it should be no aggressive weaning is happening. I keep hoping he will just start eating like the walking and the talking (maybe I am crazy).

Heart is perfect at the last appointment. No visit for 1 year. No holes and the pressure is in the normal range. 

 



 

My sweet 1st grader, Zac.  He can't even get his own picture with his favorite dog shadow without David sneaking in.  David loves his big brother.  Unfortunately, he like to throw Zac's toys and hit Zac with a bat.  Zac has endless patience and loves David to pieces.  He loves to read him books and wrestle with him on the couch.  He is an endless worrier and David's climbing gives him a heart attack.  The acceptance of a sibling is a good lesson for grown ups.  David is the only brother he has and he doesn't hang out with other 2 year olds so this is all he knows.  Zac thinks David is awesome and he is quite proud of him.  I am raising some good people for this world we live in.....

 

I love me some Zachary, as he likes to be called.  He is in 1st grade and he is doing awesome.  He is on track to great things.  He loves school, everything about it.  And he has just started his first sport, flag football.  He is not very athletic, but he is having a blast.  I think he is absolutely adorable, he is in that awkward stage of losing teeth every month.  He is 90 percent good kid and 10 percent annoying kid.  I am truly blessed.

David vs. The Hat

Heart Surgery Anniversary

1 year post surgery

1 year post surgery

1 year post surgery

Day of surgery

4 days post surgery

2 weeks post surgery

6 months post surgery

Happy to have my boys

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