Monday, October 17, 2011

I only write once a month really now. Life is too busy to write more. And my free time would rather be spent with the most wonderful man and boys in the world. Jack is doing pretty well. We are still working on the amount of food to give him and when to stop. This is really hard. For parents of typical kids, I assume you know when your children are full cause they tell you- or same thing when they are hungry. But with Jack he can’t communicate and honestly I am not sure he knows. I am convinced he thinks he is hungry all the time. We try not to eat unless he is eating and space out his portions so they last as long as we the time we are eating. But my heart breaks when he wants more and signs “more please” and I have to say no cause I know he’s had enough and then he starts crying. So very hard.

Walking – we are getting closer, if he could keep his upper body from propelling forward then I think he would be walking. It’s basically the balance at this point that is holding him back – so we keep trying each day. Soon. Soon he will be walking and I will be missing seeing that precious bear crawl.

Talking – we are teaching new signs each week – this week we are working on “help” and “soup”. I choose signs based on what he needs to communicate. So to me – teaching colors right now aren’t as important as him telling us he needs help…and soup came from the fact that I made a huge pot of chili yesterday that we will be eating on all week – so he needs to know what “soup” is. There is no sign for chili that I have found  Jack still says words and tries to imitate just about anything you say. I love his sweet voice. My heart melts every time he says something. We have taught him the sign “I love you” and it’s absolutely precious.

The 1st bit of chilly weather has come through brining congestion and a couple sleepless nights. I am pretty sure he might have sleep apnea and am hoping to get him tested soon. He wakes up at night wheezing cause he can’t catch his breath. It’s the scariest thing in the world. We are trying a humidifier which is what I have used in the past, but it still seems worse than it’s been in the past. I am terrified we won’t hear him one night – and he doesn’t know how to help himself at this point. I know it’s a mixture of tiny air passages, congestion and enlargened tongue. Friday night when we brought him in bed – Daniel was holding him after an episode and I said, “there are moments when I hate Down syndrome”. It’s the medical part of it that sucks. When you know that if his tongue wasn’t bigger he wouldn’t try to swallow it – if his airways were larger he wouldn’t stay congested – and you know those 2 things are because of a freakin extra chromosome. Those moments are hard. And I try to remember that it could be so much worse, but when your child is having a hard time breathing – it’s hard to be rational.

Which brings me to another point – the wonderful man, dad and help Daniel is. I’ve never had anyone wake up with me when Jack is sick, or having a hard time breathing, etc. Daniel has been incredible. He loves Jack. He. Loves. Jack. I can’t tell you how incredibly happy this makes me. I love that he accepts Jack as he is – pushes him to do things and at the same times understands that some things are going to take longer. I love that he plays with him, wants to cuddle with him, and talks with me about ways we can help him. I love that he isn’t embarrassed of him and doesn’t make excuses. I love that he doesn’t baby him but also knows when he needs a break. I have never had this. Jack has never had this. I wish I could put into words how wonderful he has been…but I can’t. I feel like he should have been Jack’s dad all along. And I love him so much. I feel so blessed. I am so glad Micah and Jack have Daniel in their lives. What a blessing for them. And I am so happy I get to watch them get to experience the love of a dad in action. So amazing. We get Micah this Friday and I can’t wait. I love to see him and Jack play and I love to see Daniel with both of them. It’s nice to be so happy and content. Very grateful.

Here are some pics from this past weekend:

D and Jack having some pancakes Sunday morning – such piggies.

Jack sporting his Cardinals hat!!! GO CARDS!!!!! I can’t be we are World Series Bound!!! WAHOO!!!

Jack with the neighbors – Mattie, Amber and Jamie – love the neighbors around us. All of them have been so wonderful. And Jack has so many ladies to choose from!


D being Silly with Jack

Have a great week!!


  1. Everything sounds beautiful:)So happy for you both!

  2. I'm so glad you have Daniel in your lives - he sounds like an amazing guy!

    About the food thing...I've heard that this is not uncommon in kids with Ds - they sometimes can't feel when they're full, unfortunately. I hear this again and again, and it's so heartbreaking. :-( I wish I had answers for you.

    Glad to see this update!

  3. he is doing great and most of all so are you. I love to hear how happy you are, you have a great guy and you deserve on e:)

  4. i'm so sad for all of the hard days you have.. but so glad those days are made easier because someone is helping you. you deserve that. and i know daniel will be grateful for you and the immense happiness you and jack bring to his life.

    fyi- for the congetion- i don't know if you use the bulb aspirator or what works best for your jack.. but i just bought something that the pediatric nurses recommended- called the nose frida. i put saline drops in my jack's nose - give it a few minutes and then use the nose frida to suck out the snot.. other thing you could try - in the cool mist humidifier- they have Vicks vapo pads.. that might help too. lets chat soon..

  5. What a beautifully written and heartfelt blog you have,and such a gorgeous little boy. He looks as pleased as punch on the photo with his three lady friends - very cute! I just found you by chance.

    I've just had a little baby a few weeks ago and get a lot from reading other mum's blogs. Although my little one doesn't have DS, (so I don't really have any experience), my husband's cousin does.

    He is now in his 30's and leads a great life. He lives independantly and although we only ever see him every year or so, he always remembers us and our names. He adores his family and carries a photo albumn around of us all and can point out people and name names that even I forget!

    Thank you for sharing your experiences, it's really touched me reading your blog :-)