So many things.... So little time

My baby girl "graduated" from her first preschool class today. It was so sweet to see her walk up to get her certificate. Of course it was topped off with a resounding "But mommy I can't wait. I have to pee." Oy. Of course I made her wait because I didn't want to interrupt the "ceremony". Thank goodness she's good for at least 20 minutes, if not more, from when she announces "Pee Pee!" Mommy got her moment. 

Sean can now point out noses & mouths. It's very exciting. He can also point out fishies at the aquarium. Now you might be thinking.... "Heeeeelllllooooo. Of course he can point out fish at the aquarium. All he has to do is point in any direction." I'm talking about up close & personal with the tank, points out the fish as they swim by. He likes to lean on the big tanks and watch as the colorful fish swim by.



Sean's speech therapist completed his most recent assessment. To say I'm pleased as punch is an understatement. Now I don't know where we started on the percentage scale. And quite frankly.... I don't care. I prepared myself for Sean to have more of a delay (comparatively) than he has. Sean is officially at an 18% delay across the board. His receptive language is pretty spot on for his age and his expressive language is lagging behind by a couple of weeks. I'm pretty happy with that. Our speech therapist was so happy I was happy. She explained that most parents are afraid when their kids do well because that usually means a reduction in services. I explained to her that while we love her, we'd love nothing more than to not need her services anymore and I intend to celebrate each & every time Sean makes progress toward not needing his therapies. So then she got happy and told me that without my doing what I do with him, he wouldn't be doing as well. That meant a lot to me.

Sean has also passed his hearing test with flying colors. Woot woot! His ear canals are tiny, but look great! And if you knew what kind of ear & sinus issues the poor kid came from, you'd understand how awesome that is.

Meredith's adenoids are smaller. Great news! But..... isn't there always  but? But...... one of my concerns has been confirmed. I've been saying for the last 2 years, since Meredith was taken off the prevacid & zantac, that she still had reflux. The GI dr kept saying that if she did, it wasn't bad enough to warrant medications. At 2 years old, he said that the only way to tell for sure was to sedate her & do an endoscopy. I elected not to sedate her. The ENT stuck a probe up her nose to check out her adenoids and guess what.... no post nasal drip, adenoids look great, but... he saw acid in her throat. Reflux confirmed. No sedation needed and it took a total of 7 seconds. So now Meredith is on zantac. I'm so annoyed. After 3 doses of the zantac Meredith ate 1 donut, 1 cup of chocolate milk, 1 ENTIRE NYC slice of pizza and 1 pb&j. And.... she was asking for more. While I'm thrilled that it looks like she is finally eating well.... with each meal she devours, I get angrier & angrier that my poor princess has been suffering and starving. Ok ok..... we can only move forward right?

Monday the 27th, we go for another check at the cardiologist. I'm sure everything is going to look good.

Wednesday the 29th Sean goes to the orthopedist to get a quick evaluation for some concerns I've had. Nothing majorly exciting.

On the 30th Meredith heads to the pedi to discuss this reflux business.

SO I leave you with the divas and her trusty sidekick. 



 

Happy Father's Day!

Dear Rob,

I know that I may not tell you that I love you enough, but please know that I do. I may not tell you what an amazing daddy I think you are, but please know that's exactly how I feel. Some days it's very easy to allow ourselves to get into a rut. While I don't necessarily like that a "holiday" has to remind me to tell you these things..... I'm also glad we have it so I can.

I couldn't ask for a more endearing husband. I couldn't ask for a better father for our children. I watch the patient way you love them. The loving way you embrace them. I see the unending love you have for them and it warms me to my soul.

It takes a very special person to be silly with an "almost 3 year old". Yes that what she told me the other day. "I not 2. I almost 3." It takes an amazing man to be able to juggle everything life has to offer with 2 small ones and come out smiling & more in love with your kids because of it.

Your silliness with them, compassion toward them, love for them and happiness with them do not go un-noticed or unappreciated. I do notice and I do appreciate it. And so do Meredith & Sean. I want you to remember that the smiles that light up their faces when you come home from work are their way of telling you how special you are to them. Or the way Meredith gets excited & squeals with excitement when she knows you're going to scoop her up for a giant hug. The way Sean reaches for you & nuzzles deep into your shoulder when you pick him up. These are special ways they let you know each & every day how much you mean to them.

Thats why they were so excited to take pictures to celebrate you & everything you are. They were excited to paint special frames and wrap them so delicately in wrapping paper Meredith made special for you.










Meredith was especially happy to see the smile on your face that showed her how happy her time & effort made you. She was so excited to show you her special projects and give you the card that she picked out all by herself. She was proud that she got to help Seany pick out a special card for him to give you too.

She didn't care that her projects were messy. She just knew she wanted them to be perfect for you. And perfect they are.
   



Happy Father Day to you my love. 

After Dinner Mint of Cuteness

 

He may not do things like other kids, but......

This kid takes in information like a sponge. I keep telling people that Sean is doing frustratingly well. It seems he likes to skip steps. There are things that he's doing that kids who are way older than him aren't doing. Things that drs wouldn't even think to look for because they're way beyond where a typical infant should be. Then there are the things that a typical 6 month old should be doing, but Sean is not. But..... I am celebrating what Sean can do. And one more thing that Sean can now do......

Wait for it......


Wait for it.....


Pick out the blue circle!!! He can also pick out red and squares of various colors. I'm so excited and proud. Of course he would only perform his latest trick with the circle for the camera. After that he was more interested in eating the camera.

Developmental Pedi Update -

As everyone knows our appointment with the developmental pedi  was less than stellar. I wasn't happy, but chose not to dwell to much on it. I'm sure this particular dr has her merits in very specific areas. It appears, however, that Down syndrome is not one of these areas. And that's fine. I just wish we had known. I waited to see what Sean's assessment would say before I took any action regarding this appointment.

Before writing this letter to the dr, I was concerned that my speaking up would create waves for someone close to us. That was not my intention. I was concerned that someone close to us would think I was ungrateful for her help. Again..... that was not my intention.

In the end, I did email the dr. Here is my email.

On May 10, 2011, we met with you in the hopes that you would help to guide
us in the development of our son, Sean Scott. 

While you spoke with us in great detail about the many "possibilities" for a
person with Down syndrome, we were left with many more questions than
answers. We also left feeling more than a little disappointed that it seemed
you were quoting from outdated textbook rather than actually looking into
Sean's individual development. You not only didn't look into Sean's physical
development as you were quite sure that his regular pediatrician was
following that, but you also chose to ignore very specific questions from
us. 

We asked very specific questions regarding Sean's different therapies &
therapeutic exercises and what you, as the developmental pediatrician, felt
Sean would benefit most from. Your answer, "Just continue doing what the
therapists prescribe" left us angry. We also asked you whether there were
any exercises we could do with Sean regarding his open mouth posture. You
chose to ignore this question by not even offering up a generalized answer. 

You completed an assessment on Sean. Feeling as though maybe this would at
least give us some guidance as to where in his development Sean was lacking,
we chose not to email you or the department head about our disappointment
with the appointment. I was under the impression that we would have the
results from that assessment approximately 2 weeks after our meeting. My
understanding is that the results from that assessment is no longer be valid
in aiding us in the best way to proceed with Sean's therapies as we are now
4 weeks passed the date the assessment was done. As I'm sure you're well
aware, many things change in a 4 week span when infant development is
involved. New skills are acquired and mastered. Skills already obtained are
refined. 

You told us Sean, 10 mos old at the time, was to young to give us an
accurate cognitive assessment. When we inquired whether Sean was in fact to
young for an appointment, we were assured he was not. So your comment  left
us confused. We also felt more than a little disappointed by your suggestion
that our marriage must have major problems since Sean was born. 

Given the fact that we have not yet received the assessment and our
appointment with you was less than stellar, I am requesting that we either
be granted a new appointment & assessment with a different developmental
pediatrician at no cost to us or be reimbursed for our appointment. Kindly
advise which option works best for you. 


I was so nervous when I hit "send". I didn't know what would come of it. I didn't know whether we'd receive any resolution. If I didn't get any resolution, would I feel more frustrated? And if I didn't get any resolution, how far would I take it? 


I am happy to report that I did get some resolution. Ok well....... it looks like I will get resolution. I received an email back from the dr. I really think the dr not answering my concerns, speaks volumes. 


Dear Mrs. Scott,
I am sorry that I was behind in getting Sean's report sent to you but it is
in the mail.
I will be in touch with our billing office regarding a refund.
Sincerely, 


"the dr"


I have chosen not to use the dr's name. I'm sure she is a good dr. As I said above, I'm sure she has her merits in other fields. I just really want to illustrate that unless you speak up, you really can't complain. You really can't speak about how unfair things are for kids & adults with Down syndrome if you don't speak up. I hope that this post serves as someone's motivation to speak up. I hope that moms, dads, siblings, etc. realize that if something doesn't sound right. ; if something doesn't feel right; if things just don't add up; if you don't understand..... say something. 


I'm looking forward to putting this appointment behind us & hopefully finding someone that can help us to help Sean. Or at the very least reassure us that we're doing everything we can for Sean and to keep up the good work. 

At 11 months old Sean can........

Happy 11 months to my baby boy!!! I can't believe there is only 1 more month until he turns 1. That to me is just surreal. He's such an amazing little boy and I'm blessed to have been chosen to be his mommy.

At 11 months my son, who has Down syndrome, can.............

• Sit up unassisted for upwards of an hour without falling over
• Clap his hands
• Self feed
• Say Ma ma, da da, hi, weh (wet), Em.Ma (Meredith)
• Play peek a boo
• Can get to his belly from sitting up. It's not always graceful, but it's always intentional
• Can play "How big is Seany?" 

• Wave 
• Army scoot. It's not quite an army crawl, but it is forward coordinated movement on his belly. Hooray!! 
• Charm the pants off of anyone
• Babble incessantly
• Look at objects when asked to like lamps, the dog, daddy, Meredith, ball, etc. 
• Can & does point to what he wants like his cup as he grunts or whines, his food, his momma ::::swoon:::: 
• Use a true point with a closed fist & pointer finger sticking out (like >E.T.)
• Do  Downward Dog
• Stand up unassisted by me while at his activity table and while leaning on his exercise ball
• Gives kisses 
• And...... give the best hugs. He wraps his arms around you & pulls you close. See that puddle of goo? Yeah that's me........ 
• Manage to get the wipes out of the ziploc, open the plastic pop top & take out Every. Single. Wipe. 

• And he plays so nicely with Meredith. 

There are many many more things he can do. These are just the things that stick out in my mind. I'm proud of my son. 

Angelic Simplicity

Every now & again it's the simple things that remind you how to breathe. It's the simple glimpse you catch of a little girl smiling with her daddy. It's the way the sunshine looks behind a little boy playing the sand. The sly smile you get when you ask what flavor ice cream is Meredith's favorite as she's taking a little bit.

   

You take that deep breath & remember that its all worth it. You remember that Meredith won't always have epic tantrums. You remember that therapies won't always take over your week. Ok well..... maybe both of those things will continue. At least for a little while, but at least I can remember that those things are insignificant in the grand scheme of life. My grandma likes to call them part of the buffet. And everyone knows that I like a good buffet.

I watch Sean enjoying his pasta with meat sauce and I remember when I finally took a moment to stop  & take notice. Guess what? I laugh. I giggle incessantly when the dog slinks out from under the chair to grab what Sean has so generously shared. I didn't worry about the clean up. Ok I did, but only a little. I swear. No. Really.








 
  

 








I think about these glorious little things and I savior them. After today I'm going to savior a little girl teaching her daddy to jump. I'm going to savior Rob helping his little girl to jump so high.





I'm going to forget about the crying meltdown Meredith had when I told her she couldn't have iced cream RIGHT. THIS. SECOND. I'm going to choose to forget that the scooter my child HAD TO HAVE ended up being carried on the stroller most of the way.





Instead I'm going to choose to remember & savior that Meredith did eventually get on her damn scooter. She asked that her daddy help her. She did get her iced cream and she enjoyed it immensely. Maybe the wait made it taste better? Maybe she'll remember that? HA! My choice to remember the good things must be making me delusional. I'm going to choose to remember that Sean had iced cream too and loved it.



 



 

Wordless Wednesday from our PA Trip