Therapy: What I Know Now

It's taken 16 months and I almost have this therapy thing under control.

I've learned there are two different therapy models:  the medical model and early intervention.   Under the medical model, you take your child to the therapist.  The therapist works with your child while you watch.  Often the therapist will tell you what to work on at home.  The medical model encourages weekly or biweekly visits, if possible.

Early intervention therapists come to your home.  They watch you as you work with your child, providing strategies and tips to work on until their next visit.  These therapists visit less frequently, as they believe that a child learns best at home under the guidance of the parents.

Ben has access to both models.  Our early intervention team comes to our home and our insurance covers some private therapy visits each year.  I find value in both.

At first, I thought the more therapy Ben receives, the better.  I really think I needed Ben to be seen by as many people as possible to give me confidence that everything was going okay.  But honestly, after a couple months of an intense therapy schedule, I was miserable.  I felt as though we were in the car too much.  I wasn't seeing Colin enough.  And Ben had no time to just enjoy being a baby.

I've come to realize that it isn't the amount therapy that counts but the quality of the therapist.  In early intervention there is no choice.  You get the therapists that are hired by the county and that is that.  Luckily our county's therapists are top notch.

But under the medical model, you can shop around for the therapists best suited to your child's needs.  Just by chance, the physical therapist we were assigned to after Ben's NICU stay was a home run.  We will visit her 40 times this year, which works out to be once a week with days off for holidays, vacations, and sickness.

Ben with Miss Rose, his private PT

We've recently started with a new speech therapist and I am completely satisfied.  Within minutes of meeting Ben, she explained why he does the things he does.  For example, Ben only makes the sounds ah, ma, ba, pa, and da.  She explained that those sounds don't require him to purse his lips.  He doesn't make sounds like oo because his mouth muscles aren't strong enough.  Pursing his lips is just too challenging.  She is developing an oral motor exercise program for him and, hopefully, soon Ben will be pursing those lips like a champ.  We will see her 20 times this year.

So, in summary, we take advantage of early intervention program and we will maximize our visits covered by insurance.  (We pay for our own insurance so I am doubly motivated to help Ben AND I want to get my money's worth.)  And that's enough.

Tillie, my second baby

Yes, Ben is my second child but he is my fourth baby.  Before Colin and Ben arrived my dogs, Jolly and Tillie, were my babies.

We rescued both Jolly and Tillie from our local animal protective league.  Jolly came first.  Tillie arrived a year later.  Tillie was a tough cookie when she joined our family.  She wouldn't let Jolly walk on the grass.  She attempted to violate Jolly in very inappropriate ways.  She wanted to be top dog.

And then, one day, it all stopped.  I don't know if Jolly finally stood up to her or she realized that life was good and she could relax.  But all of the sudden she went from a tough streetwalker to a pampered princess.  She refused to walk on wet grass.  She only would lay on the couch or her soft bed - never the hard floor.  She, at 40 pounds, truly believed she was a lap dog and attempted to cuddle on everyone's lap.

For 7 years I've had the pleasure of being Tillie's friend.  Her time now is short.  She has cancer (of the sweat glands - how strange is that?).  She is still happy.  She feels good.  But it only a matter of time until I have to say goodbye to my friend.  My friend who stayed patiently by my side when we received all the sad news about Ben.  My friend who loves laying in Ben's bedroom next to his crib.

I'm going to make sure Tillie's last weeks/months are the best yet.  And when I have to say goodbye, it will be an honor to hold her paw as she takes her last breaths.

Ladies Man

Hi, I'm Ben and I'm a ladies man.  I'm cute and I know it.

I'm a 16 month old single toddler who enjoys eating, taking long walks in my stroller, and crawling all around my house.

Right now my mom is my favorite lady.  But she tells me to keep my May 2028 and 2029 open.  I have plenty of prom dates lined up.  Not to mention my five plus offers of marriage.

That's right.  I'm Ben and I'm a ladies man!

16 Months Old

Ben is 16 months old!  

I thought about writing about how he is doing developmentally.  He is moving forward, slowly but surely.  But this month, it doesn't seem important to keep track of what he is and isn't doing.  Because this month I've noticed Ben is turning into a little boy.  He's doing all sorts of things that remind me of little Colin . . .

and I'm completely satisfied.

Happy Mother's Day!

Happy Mother's Day to my mom, Jim's mom, Jim's grandmas, my sister, my sister-in-laws, and to all my mom friends both in real life and in blog land!

I experienced my first Mother's Day Tea on Thursday.  Colin and his classmates hosted.

He decorated a placemat.

He served the food he prepared.

After the meal, I was presented a lovely gift.

But the highlight was when Ms. Cheryl read out loud the "All About Mom" surveys each child had completed.

Here is Colin's:

1. What is you mom's name?  Laura

2.  What name does your dad call your mom?  He tells her to work on the computer.

3.  What is her favorite color?  orange black  (Black isn't my favorite color.  Neither is orange.  In Colin's defense, I don't have a favorite color.)

4.  What is your mom's favorite food?  eggs  (I like eggs but I wouldn't say they are my favorite.  Perhaps he had eggs on the mind after preparing the egg salad sandwich.)

5.  What is your mom's favorite things to do?  works for my dad (In Jim's dreams!)

6.  What do you like most about your mom?  cleans up my kitchen (I like how he called it his kitchen and how he forgot to mention all the great mom things I do for him.)


Needless to say, all the surveys were pretty funny.

Happy Mother's Day everyone!  I hope you all have a blessed day!

Happy Heart Day Ben!

Today marks the one year anniversary of Ben's open heart surgery.  The very capable hands of Dr. Stewart at the Cleveland Clinic patched Ben's large VSD and stitched his small ASD (which was discovered in surgery and was never detected by any of Ben's echocardiograms).

Ben didn't seem to be affected by his heart defects.  He ate well and was growing.  Look at the chub on these cheeks.

2 months old

But inside Ben was sick.  He had pulmonary hypertension.  Pulmonary hypertension untreated permanently damages the lungs.  A lung transplant is necessary at a later date.  Ben's surgery alleviated the hypertension but the four months of hypertension did damage his lungs.  Hopefully not enough to affect his future health or life span.

What we didn't know was how hard his body was working to maintain health prior to surgery.  The day before surgery, I wanted to capture Ben's unscarred chest on camera.  He did not smile for one picture.

4 months old, day before surgery

But on the sixth day after surgery, just one day after the ventilator was removed, he smiled for every picture.  With an efficiently working heart, Ben could finally enjoy life!

It is quite an experience seeing your child like this.

Please note that not even open heart surgery could stop the mohawk.

But so worth it in order to see you child like this.

Happy Heart Day Ben!  We love you!

Cousins

Thank you to everyone who commented on my last two posts!  Your responses made my day.  I'm done venting.  Well, at least for now .  . .

I have 10 first cousins.  Jim has approximately 32.  Here are ten of Colin and Ben's eleven first cousins. Three more arrive this year.

I'm guessing Colin and Ben will pass 32 when things are all said and done!

A request . . .

Please don't tell me about the milestones your 46 chromosomed (and otherwise completely normal and healthy child), isn't reaching.  Please don't act like it is the end of the world that a milestone isn't met exactly on time.  Please don't tell me about the worries for your child's future such as he/she may never go to college.

I know we all worry about our kids.  It's part of being a mom.  But I'm not the person to worry to.  I don't want to hear that your child sat independently two weeks later than the baby book predicted.  Because really, two weeks later, what is there to complain about?

I wish I could be the better person.  I wish I could be the person who can just listen and not let my own emotions get involved.  But I'm not.  I working at it.  I hope to get there some day.  Because you see, I'm madly in love with a little boy who is developing slowly, who may never do lots of things.  I'm so happy he is here.

When you are with me, please tell me about all your child's accomplishments.  Learning that your child, younger than Ben, has surpassed him, is okay.  I want to see you celebrating your child's accomplishments.  I want to see you being thankful.

I'm so thankful for this little boy.

*This doesn't apply to everyone.  If you are my sister or if I love you like a sister, please know I'm always here for you.  Share, vent, and worry away to me!  

Feeling Guilty

I really dislike writing posts like this.  But after typing my thoughts and then clicking that orange publish button, I feel better.  I can't explain it, but blogging about Ben and about life in general is good for my soul.

My Top Ten Guilty Feelings (in random order)

1.  I don't practice Ben's exercises with him everyday. 

2.  I don't read to Colin and Ben every day.  

3.  I let Colin play on the ipad a couple of hours every day to keep him quiet while Ben is napping.  Because if Ben wakes up too early, I'm crabby (and so is Ben).  Colin now has an addiction to Angry Birds.

4.  I have gotten out of the habit of giving Ben his Nutrivene supplements.  When Ben was only eating baby food, it was easy to mix in the powders with the baby foods.  Now that he eats real food, I forget. Most of Ben's liquid intake is from breastfeeding so I can't sneak it in a bottle/cup.

5.  I forget to sign words for Ben.  He doesn't know any signs yet.

6.  Sometimes after the kids are in bed, I realize that Colin ate pretzels for breakfast, goldfish for lunch, and carrots dipped in ranch for dinner.  Ben has had many a dinner of puffs with a side of pureed vegetable.  Why do I dislike cooking so much?

7.  Since Colin was born, I haven't cuddled with my dogs as much as I would like.  Now Tillie is sick and doesn't have much time left.  I wish I would have scratched those soft velvety ears of hers a little more often.

8.  95% of the time, Colin only brushes his teeth once a day.

9.  I often get behind on commenting on my favorite blogs.  I am going to catch up soon!

10.  I feel guilty about feeling guilty about numbers 1 - 9.

So there it is.  Overall, I really am pretty satisfied with life.  I have lots to be thankful for and, believe me, I give thanks for all I do have every single day.  But it feels good to purge write about the negatives too. It helps to keep my glass half full!

Blogging Rut

I've been in a blogging rut.  Life's been peaceful.  I haven't been taking many pictures. I just can't think of anything to write about.

We have a busy month ahead of us.  Lots of birthdays and an important anniversary to celebrate.  I hope I'll feel inspired to write more.  I also hope to catch up on all the blogs I enjoy reading.

Here is my new favorite picture of Colin and Ben.  The quality of the picture isn't great but I love their smiles!

Snow on the way . . .

No playing outside today . . .

because snow is on the way.  Thank goodness we haven't packed our winter gear away!

Up With Alex

Ben has trouble eating in restaurants.  Now that he can move, being confined to a high chair makes him crabby.  On Sunday, Maria suggested Chinese takeout.  I agreed.  Ben loves fried rice and we could eat it in the comfort of her living room.

So on the way home from shopping, we stopped in a local Chinese restaurant, ordered, and settled in for the 15 minute wait until the food was cooked.  It was during our wait that we were approached by a gentleman who had been eating his meal in the dining area.

This kind man was Eric, father to Alex. 

You see, Alex, like Ben was blessed with an extra 21st chromosome.  In the brief minutes that we spoke with Eric, it was so clear that Alex had brought nothing but joy to his family.

Alex only had 40 months here on earth.  His heart was repaired as a baby and his family thought his heart was all fixed up.  But it wasn't.  Alex became an angel this past November.

Eric was able to give Ben a little snuggle and we so enjoyed seeing a video of Alex on Eric's phone.  Although we never knew Alex, he will forever have a special place in my heart.  And I promise to keep a close watch on Ben's heart.

In honor of Alex, his family has founded the "Up with Alex" Foundation.

Here is their mission that I've copied from their website:

"Since Alex’s passing we have started the "Up with Alex" Foundation.  The Foundation will help raise awareness to those women and families wrestling with what to do when they receive a pre-natal diagnosis of a child who just happens to have a CHD (Congenital Heart Defect) or Down Syndrome or some other genetic disorder.  We are also helping individuals of all ages to go for the “BIG TADA”!   To Live the 6 L’s LOVE,LIFE, LAUGHTER, LEARNING, LEGACY & LIFESTYLE and help live outside the box. We look to Alex's life testimony as a wonderful example of how these children really are the angels we entertain unaware."

Please visit www.upwithalex.org to learn more about Alex and his Foundation.

Thank you to Eric and his family for letting me share Alex with my family and friends.  And thank you for taking the time to visit with us in Pei Wei.  I couldn't agree more; God definitely led you to us!

A Weekend in Colorado: A Trip of Many Firsts

Ben and I flew to Colorado for the weekend to spend time with my friend, Maria.  It had been two years since we'd seen each other and 15 years since we first became friends.  Maria, thank you for having us!

Although our trip was short, Ben and I experienced many firsts.

First #1:
I flew alone with a child.  I navigated Cleveland and Denver's airports with Ben, a car seat, and a diaper bag in tow.  Without any help I made it through security and because I was holding a baby, avoided the full body scan.  I tried to be as efficient as possible and was nearly successful.  My only dilemma: what to do when there are still two hours left on the flight, you really have to go the bathroom, and your baby cries when anyone else holds him?

First #2:
I used the airplane bathroom while holding my child.

First #3:
Ben meets Maria for the first time.  Ben really liked Maria.  He always pulled to stand on the couch on which she was sitting.  He preferred eating her food.  He seemed very interested in helping shop for her wedding invitations.

First #4:
Ben touches Colorado soil for the first time.  We didn't do much sightseeing but did make a stop at the Garden of the Gods.

First #5:
We met people in person that we had met online.  Not only did we survive but we had a wonderful visit with lovely Madi and her family!  Madi is two weeks older than Ben and is rocking all her milestones.  I was so impressed.  We hope to see Madi again on our next trip to Colorado.

As Ben and I left Denver, I felt deep gratitude for an easy going baby, lifelong friendships, and Down syndrome (how else would we have met Madi and her family)!

And Ben is ready for his next trip!

Growth Hormone Deficiency Update

At 12 months old, I was told by Ben's endocrinologist that Ben was growth hormone deficient, would not properly grow, and that he should be injected daily with growth hormone.

After talking to Ben's pediatrician and researching online, I decided against these injections.  I could not inject my one year old each do with a substance that would increase his chances for cancer.  I know Ben will be short.  According to the pediatrician, the tallest men with Down syndrome are five feet four inches tall.  

Today Ben had an appointment with a different endocrinologist.  He is part of the same hospital system but has office hours in a location closer to home.  He was surprised to learn that his co-worker even suggested growth hormone.  He has never heard of anyone with Down syndrome taking these injections because of the increased cancer risk.  Also, because growth hormone peaks at different times of the day, the blood test Ben had done does not prove that he is actually growth hormone deficient.  So Ben may not be growth hormone deficient after all. 

This growth hormone saga has made me think a lot about Down syndrome and what that means for Ben.  On one hand, I expect Ben to live a "normal" life.  We work with him with the hopes that he will be able to work, marry, and perhaps live independently.  But, when making decisions about things like growth hormones I do think about Ben and his limitations.  In society, it would be difficult for a man to be very short.  But will being short bother Ben?  I think, and hope, that his cognitive limitations will allow him to him to be satisfied with a body that is not quite "normal."

His body is complicated but we sure think he is cute!

15 Months Old: Ben's Top Toys

What does a 15 month old boy, who happens to have Down syndrome, like to do in his spare time?

Chew on Colin's books.

Tap all the furniture in the house with a tinker toy.

Shake pom poms and . . .

Mardi Gras beads.  It seems that purple and blue beads are his favorite.

Why do we buy him any real toys?  That is a question we keep asking ourselves.  Although the Easter bunny (aka Grandma) bought him this, which he loves.

Have a happy weekend everyone!

Scary Easter Bunny

Why does the Easter bunny always look so scary?  At least Colin agreed to be in the picture this year!

Last year - no Colin.

Happy Easter!

Meet Andrew: Ben's New Friend

Meet Andrew, Ben's new friend!

Andrew is only two months older than Ben.  He has the sweetest smile, repeats sounds (so impressed:)), and, best of all, he blows the best kisses.  He and Ben met for the first time on Thursday during therapy in the pool.  I see lots of play dates in the future for these boys.  I look forward to all the trouble fun they will have together!

I have more hair than Ben!

Colin swam too.

Buddies!

Thank you to Andrew's dad, Jeff, who took the pictures!

T21 and Dilated Brain Ventricles

I recently read about a family who ended a pregnancy because of T21 (Down syndrome) and dilated brain ventricles (which can mean ACC).  They were told that the quality of life of the child would be poor.  So I thought I'd title a post "T21 and dilated brain ventricles" in the hopes that if someone would google it, this blog would appear and they could see Ben.

 

His quality of life is not poor.  I have absolutely no fears that it will ever be poor.  Remember I've met two people with T21 and ACC.  One is mainstreamed in kindergarten this year.  The other is a student in community college.

I'm not trying to convince anyone to keep a pregnancy they don't want.  I'm learning that we each have very strong opinions about that topic.  I do feel bad that this family's doctors painted a miserable picture of Down syndrome and ACC when there is a very positive and hopeful future for individuals with this combination of diagnoses.  

So, if you've just received the news that your baby has T21 and dilated brain ventricles, I wish you the very, very best on whatever path you choose to take.  Please feel free to email me with any questions you may have.  I would be happy to share about our daily life with Ben and promise no judgement on whatever decision you decide to make.

Friday Night Fun

Restless Night Sleep + Way Too Early Nap =

Oh Ben!  Let's hope Saturday night is lots more fun.