Welcome to the Club

So, it's been over a week since we returned from the National Down Syndrome Convention and I am just now feeling ready to write about it. Well, not really, but I feel I need to even if I'm not ready.

First, let me say we are glad we went to the convention and will go again. We learned great information and met some terrific people (loved meeting some fellow bloggers). When we first returned home, I thought I just felt neutral about the experience. Plenty of good and also plenty of reality check.....but, as I've processed more, I've realized it was really harder for me than I expected. It was our official induction into the "Club" we never wanted to be part of.

The hardest parts for me were the speakers and seeing a lot of adults with DS (I still love seeing children with DS) in one place. Yes, those who spoke at the general meetings were impressive and inspiring, but some were also still tough to understand. And if these were the "chosen ones", would this be the top of what we could expect for Nate? And then there was the really broad range of adults with DS we saw throughout our conference experience. Some were well-spoken and took pride in their appearance while others looked like they'd given up and simply shuffled along with their caregiver. So, how much of this is the direct result of their upbringing? I have a hard time believing that all of those people who "shuffled around" were not given the opportunity to succeed - yes, maybe some of them, but not all. Does that mean that we could give Nate every chance to succeed, spending a lot of time, energy and resources on him, but his ceiling is already determined?

When this day started, I had resolved (AGAIN) to focus on today - to look at Nate for the sweet little guy he is and try not to get bogged down in the worries of the future.

But then, during naptime, I had to make phone calls for appointments (hearing aids, 2nd echocardiogram, cancel OT because it seems redundant right now) and do some research (are there any speech therapists in our area who practice the kind of therapy I learned about at the convention?) and those just sucked me right back out into the concerns and "what ifs" I have a hard time escaping.

So, for those of you out there who are praying for us, this is my ongoing prayer request: That we would live in the present and be hopeful for the future.

-Danielle

Wordless Wednesday - Bathtime!

Grocery Store Comments

We're in California this week, but I wanted to be sure to post this before I forgot.

We had a very interesting experience yesterday. We stopped at Safeway to purchase baby food, formula (for all of you hard core breast feeders - yes, I tried very hard, but the supply just never came) and toothpaste. I was holding Cody's hand and Bob had Nate shlumped over his shoulder. Since we only had a few items, we went to the self checkout lane. Unfortunately, they were having some issues with the computers and we had to wait for the attendant to complete our transaction. A few minutes later, she came to us and apologized and told us the items were "on us". We were pretty pleased with this, but a moment later she said something that caught us offguard. She said, "Having a sick child is hard enough, you don't need to deal with this too.". If we'd purchased medicine, this may have made sense. So, as we walked out of the store we realized she must have noticed Nate on Bob's shoulder and thought his DS was "hard enough".

This was the first of many grocery store encounters we are sure to have. At least this one saved us 20 bucks!

-Danielle

Convention - Mixed Emotions

So, we're heading down to CA tomorrow to visit friends for a week before the National Down Syndrome Convention. We'll spend the first part of the week in the SF Bay Area and the 2nd part in the Sacramento area. The convention is F/Sa/Su next weekend at the Sacramento Convention Center.

I have mixed feelings about going to the convention. It feels like this is our official induction into this club we never expected we'd belong to. We have been able to control how much information and exposure we've had to DS in the past 7 months, but at the conference it will be inescapable. Seeing hundreds of people with DS in one place sounds really overwhelming to me.

On the other hand, I am really looking forward to connecting with some of the other bloggers I've been privileged to be on this journey with and meeting others who deeply understand the emotions we are going through. I'm looking forward to having experts at our fingertips. People who know a lot about DS, not just a little bit about a bunch of different kinds of physical/emotional/mental challenges. No offense to the therapists and special ed teachers we've been working with, but they do not necessarily know the latest research as it pertains specifically to DS. I'm also looking forward to meeting people with DS who will be able to broaden my picture of what it looks like to live with DS as an adult.

I'm hoping to come back with a deeper network, more information and to feel empowered to better care for Nate.

I'm not sure if I'll be able to blog while we're gone, but will be sure to when we get back!

NOTE - FOR THOSE OF YOU WHO HAVE CHILDREN WITH DS, BUT ARE NOT GOING TO THE CONVENTION...IF YOU HAVE SPECIFIC QUESTIONS YOU'D LIKE ME TO ASK FOR YOU, PLEASE POST HERE!

Take care,
Danielle

Tongue Tricks

This is a video I took last week, but have had a hard time uploading it!

Nate discovered his tongue can do some pretty fun things!

Enjoy,
Danielle

Hearing Test # bazillion

Yesterday was a day of mixed feelings. Bob and I had been invited by a work associate to go to a Mariners game and enjoy it from a suite right behind home plate. We had planned on going, but when the only hearing appt available for Nate was yesterday, we thought we better make him a priority (even though we could really use the connection time). When I shared this with my mom and my dear friend, Ginger, they both jumped at the chance to help out. My mom took Nate to his hearing test and Ginger watched after Cody.

So, Bob and I had a great time while Mom went to Doernbecker Children's Hospital. Nate could not have any formula after 8:30am and the appt was at 2:30, so Mom had her work cut out for her. He was not happy about being deprived (even though I got him up early to make sure he was able to eat at 5 and 8). When they arrived at the hospital, they put numbing cream on Nate's hands and legs. After that took effect, they tried desperately to get an IV in him. Mom had to hold down his arms while the doctor and nurse worked to get in into his legs. They almost had to put it in his HEAD, but finally were able to get it in one foot. So, they sedated him, my mom held his hands and rubbed his head and he went off to dreamland.

The test was 2 hours long and DID NOT GIVE US A DEFINITIVE ANSWER on Nate's hearing. UGH, UGH, UGH! Are you kidding me? This is so ridiculous! This is so frustrating! We think the next hearing test should be free (yesterday's will cost about $2500 because of the sedation). We do know pretty certainly that he does have at least moderate hearing loss in both ears, but one may be worse than that. They just can't get a good read on his left ear because the canal is so small. They even used preemie devices to test, but that didn't even help. So, now we need to go to a pediatric ENT (ear, nose and throat) Doctor, get a plan devised with her and likely have another sedated test (cha-ching). We will then get fitted for hearing aids (cha-ching, cha-ching) and will begin speech therapy (cha-ching)....

I'm noting the cost of all of this because it is overwhelming and frustrating. God is being amazing in providing for us right now, but what if that were not the case. How do people do this??? Hearing aids generally cost $2000-$3000 and have to be replaced and changed. Speech therapy is definitely a must and is not covered by insurance and costs about $125/$150 for each weekly session. Our system is just not set up to help families with special needs.

I'm beginning to understand why so many other parents of children with DS have used the term advocate when describing their role. I think I'm going to have to learn this role very quickly.

-Danielle

New Moves and Sounds

Nate turned 6 months last week and is doing some new tricks I'd love to share. He's been rolling from his back to stomach for quite a while now, but is now rolling from stomach to back too! He is also doing really well with tummy time, pushing up on his arms and holding his head up for extended periods. I've been working with him to grab his feet lately - I'll take his hands and help him grab onto his feet, then I hold them in place and rock him side to side. He absolutely loves this! Today, he has now discovered how to hold onto his own feet!!! Yeah!


Nate also started making the "b" sound over the weekend. Ba, ba, ba. This is his first consonant sound!

It's fun to see him progressing and helps affirm our work with him.

Nate's sedated hearing test is scheduled for this Wednesday, so we should finally have a prognosis and plan for his hearing. I'll be sure to update the blog as soon as we know more.

-Danielle