Friday, August 27, 2010

Health stuff

So, I thought I'd post a quick update regarding Jack's health.

For those of you who are new to our blog..Jack has had recurring high fevers (avg 103 degrees) ever few weeks since May. The fevers last 1-3 days and are sometimes one week about and other times 3 weeks apart.

Our previous pediatrician wasn't doing too much so we switched. We had 2 specialist appointments this past week. Our local DS center is wonderful. After spending 45 minutes with the doc (that's right...45 minutes - which was wonderful!)we decided to do some labs to see what's going on with Jack. He has a fever the day they ran the labs. His immunoglobulins were normal, but his white blood cell count was incredibly elevated at 25,000. After reviewing his blood-work with Hematology/Oncology, leukemia was ruled out, but that left many other possibilities. Since Jack's fever's have no other symptoms and no one else gets sick caused the doc to think something could be going on that we don't see. So for the time being he is on a fairly strong antibiotic, omnicef, which he was on when he had Pneumonia back in Feb. The high count shows there is infection, possible bacterial, that has most likely been there for quite a while, thanks to our previous apathetic pediatrician. It also means that something else could be going on since Jack's system is fighting so hard.

So, we will re-draw blood after the round of antibiotics and see what his levels are. He will also be tested for Celiac disease and we have an appointment to see an Infectious disease doctor in September. It's been a long summer dealing with these fevers and more doctors who won't listen to us. But now, it seems we are on the right path. Thanks to those of you who have thought of us and our Jack. Developmental delays take a back seat when your baby is sick and you are reminded of more important things, like laughter, smiles and good health. Jack seems to be feeling better today, and I am glad to have my smiling, happy boy back.

Have a great weekend everyone and I promise to post some photos next week!

Friday, August 20, 2010

Dear Jack

In light of a week filled with ear infections, allergic reactions to medication, therapy issues and more offensive comments by celebrities, I have found myself a little worn out, a little overwhelmed and a little frustrated.  And instead of writing about all of that, I find myself wanting to talk to our son and tell him how I feel about him.  So Jack, this is for you:

MY sweet Jack,
You will be 14 months old this Sunday.  This means that for 14 months your daddy and I have been blessed with your presence, your smile, your tears, your laughter, your giggles, your snorts, your waves, your cuddles and your love.  We could not have wished for a more perfect son.  You are so good at grounding us and reminding us to slow down and enjoy life.  You are so good at making us smile and making us savor each moment.  You have made us both better people, better spouses and better parents.  We love you so much.  I hang on your every babble, your every laugh and I come running when there is a tear.  You have me totally wrapped around your tiny, pudgy fingers and that’s just where I want to be.  I can’t wait to see what this next year holds.  I hope we get to hear you say Mama and Dada, I hope we get to see you crawl and climb and get into all sorts of things, but most of all – I know we will experience more love, more laughter and more joy than even we did this past year.  I just want you to know that I love you my sweet sweet son.  You truly are magical and we are forever imprinted with love because of you.  I hope and pray that everyone who meets you undergoes the same changes we have and loves better because of your sweet, innocent spirit. 
Momma and Daddy

Here is one of your recent photos, that I love:

Happy 14 months sweet Jack!

Monday, August 16, 2010

Anyone near St. Louis??

I keep reading blogs where fellow bloggers have met up to meet one another's kids and share stories and good food! I am wondering if anyone is near the Chicago/ St. Louis, MO area?  If you are - message me and perhaps we can try to get something set up before winter hits. I would love to meet as many of you as possible. Your stories have become part of our life. 

Which brings me to another idea.  I know the National DSA has a conference each year filled with sessions and speakers, but what if we started our own 'getaway/conference' of just families.  We could all meet somewhere in the middle of the country, bring our families and just build relationships and friendships.  That would be awesome.  I can dream, right?

Wednesday, August 11, 2010

You have to watch this!

"Deedah" is a short documentary from a sister's (Deedah) point of view about having a brother with Down syndrome.

To watch it click here: Deedah Trailer

It definitely makes me want to start trying for another little one soon so that Jack can have a sibling.  Hmm..I may have to talk to the hubs about this tonight ;)

You can learn more about Deedah and purchase the DVD here:

Have a great Wednesday everyone! 

Thursday, August 5, 2010

The Future and more Photos

I suppose every parent wonders what their child will be like when they grow up; what they will do, what they will look like, who they will marry, etc.  It's not so different when you have a child with developmental delays or chromosomal abnormalities.  The only difference is that those common questions seem to carry a little more fear and uncertainty.  Of course we have high hopes for Jack.  We will work extrememly hard to provide him with a life that will allow him to excel and experience the fullness of life, but that doesn't take away the fear of the future.

I am inspired when I read stories/articles like these:


This is a website company started by 2 individuals who have DS.  I like what Megan (one of the owners) says in regards to DS, "Kids with Down syndrome can do all the things other kids can do. It just takes us a little longer. When people show us what to do, we learn easier and faster."  Which reminds me to continue to be patient with Jack knowing that he will eventually 'get' the things we are trying to teach him. Megan and Eric make money for their company by selling cards with the faces of children and adults with Down Syndrome so as to spread awareness.  How wonderful.


This post, by Dave Hingsburger, recalls a story about a man with DS.  A mother and her son (pre-teen w/ DS) were having lunch and the mother wanted to go with him to get his food and then he could go with her to get hers.  This seemed so silly to the young man.  He insisted to his mother that he was capable of getting his own food.  They started arguing a bit, and finally the young man says, "Trouble is you think I have Down Syndrome all the time and I don't,'"he said with real frustration. She stopped again, 'What?'    The young man then says, "I only have Down Syndrome sometimes, when I'm learning something new or if the words are real hard. I don't have Down Syndrome the rest of the time when I'm doing what I know how to do."

I need to remember quotes like that as we are rearing Jack. I need to remember that his diagnosis doesn't define him or all the things he does or doesn't do.

I love you Jack.  I can't wait to see and hear what your dreams and interests are and I know you will accomplish them.  Your dad and I will stand by and help you when needed.  And remind us, if we forget, that you are capable and able to do all things.  We love you.

And to end this post with photos, of course, here are some more from our Littlest Heroes shoot, courtesy or Laurie Knowling Photography (

have a great weekend everyone :)