Down Syndrome Clinic Recap

Our appointment at the Down Syndrome Clinic went well. We are awaiting a written report and will determine if it was "worth it" when we receive that. However, we were glad to have gone and to talk with people who are so knowledgeable about DS.

Here's a summary:

Audiology - We started with yet another hearing test. I haven't really written about it, but we are still unresolved with Nate's hearing. We've now had 5 hearing tests for him (3 of them being 4 hrs long) and don't know what his hearing truly is. We've had anywhere from mild hearing loss in both ears to normal range in both ears. We've suspected that there is some loss as Nate really only responds to loud sounds. The test on Friday confirmed that there is some loss and that we need to do a sedated test. So, we'll go back soon and have another long test while Nate is put under. From there we will know if he needs tubes (very likely) and hearing aids (also likely).

Speech Therapy - We met with an ST who mostly asked us questions about feeding and took a lot of notes. We'll be starting solids soon, so we did ask her some questions about that - we weren't all that impressed with this part of our appt, but her written report may prove us wrong. We'll see. She did confirm that we need to begin Speech Therapy as soon as possible (they work on Oral Motor skills, developing the muscles in the face and tongue and helping with tongue control). Our insurance does not cover ST until Nate is 2.5! So, we need to look into community resources to see what other options there are for him. We also need to push more with our Early Intervention team to make sure we are getting as much as we can there.

Neurology - The head of the Down Syndrome Clinic, Joseph Pinter, met with us next. He has worked with DS for 13 years. He started out as a Pediatrician, went back to school to become a neurologist, did research on the brain of mice who had DS and has done a lot of brain imaging of children with DS. He was very passionate and wanted to get and give as much information as possible during our hour together.

We were supposed to end with Occupational Therapy (to assess gross and fine motor skills), but Nate was passed out at this point as it had been 4 hours of poking and prodding. We feel the most confident about his physical progress, so missing this part (and not having to pay for it) was fine with us!

Overall, the team seemed to think Nate was right about where he should be. He is moving and interacting as they would hope. Our main thing is to get the hearing figured out and get what he needs to hear as that is so critical in speech development. We will go back to the clinic when Nate is a year and then yearly after that. The idea of the clinic is to be a resource. They can evaluate Nate and give us written reports to give to our pediatrician and early intervention team. It feels good to have a team of experts to access.

So, our next few months:
*Sedated hearing test
*Sedated procedure to put in ear tubes
*Get hearing aids
*Thyroid test (people with DS tend to have underactive thyroids, so we'll have this tested yearly)
*Oral Motor therapy session to help us make sure we are approaching solids properly
*2nd Echocardiogram to make sure the valve in his heart has closed. If it hasn't, he will need to have a procedure done to close that

I really feel for people who raise children with special needs without the help of family or friends. My mom has been so helpful in watching Cody whenever we need to take Nate to appointments. Dragging Cody along to all of these would make things a lot more stressful. We've also had so many friends and family members help in many other ways.

If you know someone who has a child with special needs and have a little extra time or energy, I encourage you to reach out and ask how you can help. Or, better yet, just tell them how you are going to help (ie/ "I'd like to watch your other child during your next appt, when is it?" or "When is your next big appt day? I'll bring you a dinner that day." or "What night can I come over this week so you can have a date with your husband?") No matter how old the child with special needs, there will always be extra work and juggling with the other kids. Working together can really ease the burden!

Thanks for reading our blog! We'll be sure to keep you updated as we learn more about Nate's hearing.

-Danielle

Anxious

We have a big day tomorrow. We are heading to the Down Syndrome Clinic at OHSU (part of the Child Development and Rehabilitation Center). We will meet with a team of Doctors (Neurologist, PT, OT, Psychologist) for a 4 hr appt. They will evaluate Nate, help us set expectations, set goals, give resources and suggestions. I'm anxious because we've been waiting for this appt for 2 months (he had to be 6 months to go). I have built it up in my mind to something it likely can't live up to (especially with the hefty price tag we'll be paying!).

So, I'll report back tomorrow or Saturday.

For those of you with children with DS, if you have any burning questions you want me to ask this team, please just post a comment by 10am Friday, 6/26 and I'll be sure to ask for you!

-Danielle

Not Your Average Daddy

Happy Father's Day!

I thought this would be a perfect time to pause and really think about how amazing Bob is as a father to Cody and Nathan. Really, he is incredible. Before we married, I knew he would be great with older kids (he was a Young Life volunteer and worked with some tough kids in SF for 6 years), but I never could have imagined how great he would be with our young little guys.

No matter what kind of day he has, he digs down deep and finds the energy to give our boys whatever he can - and that's a lot more than a lot of dads out there. He dives right into Cody's world and does whatever he wants to do. I'm amazed that even after a really hard day, he makes it a priority to play with Cody with great abandon, help put both boys to bed, help around the house and then, usually, put me to bed as well.

I often hear about the frustrations other women have with their husbands, but often just keep quiet. I don't want brag that I married a man who actively parcipates in the lives of his wife and children.

But today is not the day to be quiet. I want to yell to the world that Bob is NOT YOUR AVERAGE DADDY. He's an amazing father and husband. I am so blessed.

-Danielle

Blog Therapy

Blogging is, to say the least, cathartic.

When I first started blogging, I really thought it was for the benefit of others...to keep our friends and family in the loop. But after that first entry, I knew this was an entirely different experience. Making it available and public made my writing so much more therapeutic than a journal. Somehow, knowing others were reading my entries helped ease my burden and my mind.

Initially, I was inspired to blog after reading the blog of a friend of a friend. I learned of "Trisacharm" when Nate was 2 weeks old and I devoured nearly every word as fast as I could. To that point, I had felt so confused and alone. I had so much support around me, but needed to connect with someone who was going through the same thing I was. Reading Jen's honest description of her experience empowered me. I thought, "If she can do it, I can do it".

Since reading Jen's blog, I have found many others! There is such an amazing community of people around the world who are blogging about raising children with DS.

So, my goal is to be raw and honest. To not censor my thoughts, but just allow them to flow freely. This is my therapy. I pray my "blog therapy" can help even one other person the way Jen helped me in those desperate first weeks.

Sometimes I get lost in this blogging world. I think that's okay though....getting lost often helps me find my way...

-Danielle

(And if you were wondering, yes, I love it when you leave comments. It gives some validation to my thoughts and encourages me to continue writing. So, thank you.)

Tunnel of Progress

I guess I'll start by saying, we're in a "happy tunnel of progress". I call it a tunnel because as long as I stay focused on Nate's progress as it relates to himself and am very careful to not compare him to others, we're good! We just need to keep that tunnel vision and recognize Nate is making progress compared only to where HE was yesterday.

I found a great new toy at Tuesday Morning yesterday. It's called Will C More and it's made by Discovery Health. It seems to be just the motivation Nate needs to really work on some good tummy and side-lying time. He's eager to lift his head to see the screen and this toy will transition with him through many stages. I love it!

Nate is doing well lifting his head for longer periods and is consistently rolling from his back to his stomach. This week he has begun to figure out how to get his hands our from under him after he's rolled to his stomach, so that's great. He has also just started bearing some weight on his arms. He's definitely getting stronger!

Here are a few pics...

I just have to keep taking things one day at a time - that's all we really know we have anyway, right!?

-Danielle

Gentle Approach

Well, it looks like I'm getting what I hoped for. More and more people are approaching me and being clear that they know Nate has DS. Today at church, I had 2 people approach me. The first told me she is a cytogeneticist. She wanted to make sure I knew she'd be happy to talk with me if I had any questions. The second was a woman who has a 20 year old brother with DS. She approached very gently (it's clear she understands the mixed emotions I have). She introduced herself and her husband and asked my name. She then commented on how she had been watching me with Nate during the service and thought he was so cute. This is the point when I usually get a little uncomfortable since I know he is not the conventional "cute" and that it is sometimes the word people use because they don't know what else to use. But this time was different. Since she had approached me so intentionally, I knew there must be something more. I paused for a moment and she jumped in to share about her brother. I could see in her eyes that she adores him and really wanted me to know how much he means to her. She had seen us in church a couple of weeks ago and told her mom about us, so her mom has also extended an invitation to talk.

I so appreciate these exchanges. But, I've found, I'm still not all that ready to talk with those who have experience with older children or adult with DS. I can handle infants and toddlers - I don't have set expectations for those little ones under 3 or 4. But once they get into school and beyond, that is where I feel challenged. There is just such a wide range of ability.

So, for right now, I'm just going to continue enjoying my sweet little 5 month old. He is honestly the sweetest little guy (well, except for those few hours in the afternoon when he just won't sleep). I'm working hard to not have specific expectations for him, but to allow him to develop in his time with our help.

And when I'm ready, I will be thankful for all of the people who have stepped forward to share their thoughts, advice and experiences.

-Danielle