Monday, April 16, 2012

Walking

Many people ask, "when will Gabe walk?" Gabe's physical motor skills are very delayed...even a little more so than typical Down Syndrome. There are a couple reasons why this is:
1. Gabe had very little tummy time as an infant due to illness. Gabe went through stomach surgery and heart surgery and we couldn't lay him on his belly. Therefor, he didn't develop the muscels as well in his abdomen and shoulder, making it difficult to stand and balance. He also refused to crawl which is a precurser to walking.
2. Kids with Down Syndrome typically have poor tone. Gabe has to work his muscles twice as hard as the typical child to keep them flexed and active to walk.
3. He's stubborn and it is easier for him to butt scoot around, so that is what he chooses to do.
I know he will walk one day, it's just been a really long and trying process requiring lots of patience and work. Last weekend Justin and I were eating dinner with the kids on the deck. We were talking about activities for the summer and Justin made the comment, "I really thought that Gabe would be running around this summer. I remember thinking last year, that next summer would be so great because he'll be walking...and he's not. I know he will one day, I just really want him to walk". I said, "I know, I do too". There was about a 5 second pause and a little voice at the table says "sorry" and looks up at us and signs sorry as well. Gabe just broke my heart. I held back tears and told him we knew he was trying hard and would get there eventually. Later that night, he took some steps. Check out the video. I think he knew we needed it. He hasn't repeated it this well since, but it lifted our spirits, that's for sure. I love my little boy!

Monday, April 9, 2012

Wednesday, March 21, 2012

World Down Syndrome Day

Today is World Down Syndrome Awareness Day. 3 copies of the 21st chromosome (3/21). I love every chromosome my Gabe has, so I guess that means I love Down Syndrome too.

I love his single palmer crease.


















I love his little ears.






















I love his almond eyes (and slight nystagmus in this picture).




















I love his repaired heart.



















I love Gabe and I wouldn't change anything about him (except maybe take away a feeding tube and get him to take independent steps...ha!).

Sunday, March 4, 2012

Baptism and Grandma We



























Alyssa was Baptized a couple weeks back. Here are some pics.


My Grandma Wehage passed away on Friday night at the age of 96. She was ready to move on and at peace with it. Alyssa is wearing my Grandmother's Baptismal gown in these pictures. It was slightly yellowed, but very special. I've been thinking about my Grandma alot this weekend. I have a very clear memory of being about 7 years old and her babysitting my brother and I. We were at her apartment playing the tile game drinking Tab cola out of a plastic cup from the 70's with Golden Girls on in the background. I would eventually fall asleep on a green velvet couch with Empty Next on in the background. I can still remember the sound of her clock in the dinning room chiming on the hour.


I also remember my Grandma picking us up from school in her little white car on the last day of class before summer break. I got a C on my report card and was embarassed to tell her. I told her about the C (along with the other A's and B's) and her response went something like, "that's great. Lets get a creamy whip"...I'm still convinced that creamy whips make everything better.












Wednesday, February 29, 2012

Sunday, February 19, 2012

We're home

Both Gabe and Alyssa were discharged on Saturday. They both have a little residual cough, but are doing well. Alyssa still has a little bit of coarseness in her lungs, but is breathing much more comfortable. We are continuing to suck their noses out really good for the next couple days and it should clear up on its own. I have to call the pediatrician to check in on Tuesday. I'm glad last week is behind us. I'll try to post healthy pics later this week. Right now it's time to catch up on some sleep...zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz.

Thursday, February 16, 2012

Hospitalized

Here is the quick version:
Gabe's cough got tighter on Saturday with wheezing. Took him to the doctor. Responded well to a nebulizer treatment started on steroids. Got worse over the weekend. Fingers looked dusky during his nap Monday. Went back to the doctor. No longer responding to nebulizer oxygen levels dipping down to the 80s. Brought to ED. Admitted. Nasopharyngeal suctioned. Still on oxygen. Lungs slowly clearing. Seems to have more energy today.
Alyssa started with a little cough Sunday. Got a little wetter with secretions as the week went on. Tried to stay on top of it with the bulb syringe saline drops and humidifier. Started working to breath and sounding course in her lungs yesterday. Brought to the ED. Admitted with bronchiolitis. She shares everything with her brother. Suctioning and oxygen for her.
They are down the hall from each other. We are juggling the two kids and grandma's are helping. There are visitor restrictions and they are both in respiratory isolation so you cannot visit. We'll let you know if we need anything. Thanks for the prayers.