Merry Christmas - Recap of Our Year!

2009 brought many joys and surprises. The biggest one (well perhaps not in weight as he was only 8lbs and 3 oz.) was the birth of our second son, Nathan Graham Paskins. Nathan, or Nate-Nate as we affectionately call him, was born on New Year's Day. He was the first baby born in the hospital this year, and the hospital provided us with several gifts to celebrate the occassion. However, as our financial friends pointed out, we just missed the tax deduction. Oh well, that is something to look forward to in 2010.

However, we were not done with surprises on that day. We almost instantly realized that Nate-Nate had Down syndrome. This was a huge shock to us and took a lot of prayers and support to help us adjust to this new reality.  We have had countless visits to doctors and therapists (as regular readers of this blog know), but we are encouraged that Nate is quite healthy, and progressing more and more each day.  He is a very sweet, smiley little guy.

Cody (who turned three in September) enjoys being a big brother - although he had his reservations at first. Once he figured out he could make Nate smile, it became one of his favorite pastimes. In August, Cody began Pre-school three mornings a week and loves his Montessori program. He's all boy and loves anything and everything transportation-related, playing chase, playing catch and moving constantly. Cody will tell you that his favorite food is salad - with several varieties of fruit close behind. He could eat bowl after bowl of fruits and vegetables and is probably the healthiest eater in the family.  Cody is so much fun and continues to entertain us with his great personality.

Danielle is keeping busy and doing great. Not only does she take care of the boys during the day, but she has started a Women-only Boot Camp that meets at 5:45 in the morning. In September, she reluctantly ended her stint as a Baby Boot Camp Instructor, after 3 1/2 years, to focus on the boys - especially Nate's frequent therapy appointments. On top of that, Danielle is involved in the reunion committee for her 20th high school reunion. Oh, and one last note, Danielle also is getting quite a reputation for her prowess in baking chocolate chip cookies. As a personal trainer, she likes to call it "job security".

Bob is still at KPD Insurance and, despite the economic conditions, doing quite well at his job. The boys light up when he is home and constantly want to play with him or help him with family projects. This year he captained the church Men's softball team. The team went 3-6-3 (yes, apparently there are ties in softball) so he is looking to improve on that for next year. Additionally, he has played drums at church several times over the year and tries to play pick-up basketball once each week. His highlights of '09 were going to see Star Wars in concert, and getting special backstage passes to hang out with the band, the Fray.

We thank you all for your support this year. We are extremely blessed to have such love surround us through the twists and turns of life.

Merry Christmas and a Happy New Year to your and yours.

With thanks and love,

Bob, Danielle, Cody and Nate-Nate

Ah-ha Moment

I recently had a pretty big "Ah-ha Moment".  

Since Nate was born on New Year's Day, we still had a wall in our family room covered with Christmas photo cards of many friends and family when we brought Nate home from the hospital.  This wall remained that way for several months as it served as an amazing reminder of the support system we had.  But the wall also served as a reminder to me that our family photo for Christmas cards would be much different than I ever thought.  I shed many tears thinking about our '09 photo and thought making our photo card this year would be very painful.

Well, I picked up our cards yesterday and realized that I hadn't even given it a thought.  Instead, I'd simply thought how much I loved the pictures we got of our sweet little guys.

Another realization that feels really, really good!

-Danielle 

"Glee" Redeemed

About a month ago I wrote an entry about how I thought Fox's show, Glee, was not sensitive to people with disabilities.  I was offended by some of the things they said about "special ed kids", "mongoloids", as well as insensitive comments about other disabilities.  Well, I'd considered boycotting the show, but for some reason, got sucked in. 

Last night's episode has redeemed the show for me!  I was so surprised to find that what I thought was offensive had now become a show working hard to break through stereotypes and make the viewers aware of the struggles some go through.  The entire Glee club spent the whole week in wheelchairs to try to understand what one member of the group experiences on a daily basis.  The Glee club quickly realized how difficult his life is and experienced the prejudice he lives with.  They then introduced a girl with Down syndrome.  The coach of the cheerleading squad (a very harsh, insensitive, guarded character) was forced to hold open auditions.  After the girl with Ds stumbled through her audition, the "Cheerios" coach tells her she made the squad.  This part made me a little nervous, thinking the coach was going to show her insensitivity again.  I actually watched the rest of the show with a bit of anxiety and anticipation, just expecting to be offended.  Instead, I was pleasantly surprised to watch this cruel cheerleading coach soften as she walked in to visit her older sister who had Down syndrome.  Her facade melted away and she lit up as she sat next to her sister's bed and proceeded to read a story to her.

This show may actually have a chance to raise awareness and change perceptions about Down syndrome and other challenges. 

I stand corrected and humbled.

-Danielle

Update - Nate at 10 months

Hey there! I haven't been writing much lately. I had started using Blogging as a therapy of sorts and think I just got through a really tough patch and then didn't need to write as much. So, now I need to get back to my original purpose of the blog and just keep all of our friends and family up to date!

First of all, we are doing well. We have really turned a corner as a family. We now see that Nate is just another part of our family and we are cherishing him. He has mastered the art of melting our hearts with that full face smile of his and we love it! I can honestly say I don't have sadness over him anymore. Yes, I have times of frustration or just feeling overwhelmed with all that needs to be done for him, but sadness is not part of that. I see that we have a very unique opportunity to see life through a very different perspective than most. I see that our child's special need is not nearly as challenging as so many others out there. Okay, if I'm really honest, I do have moments when I look at other families and wish for a second that I could have the typical life....but, does typical mean great? Has having Nate made us stop and evaluate what life is really all about? Yes, I think it has. And I think, from what I hear, that we will continue to slow down and appreciate the little things in life.

So, on to the update about Nate:

Hearing

We have been using a hearing aid with Nate for a couple of months now.  At first, it seemed very cumbersome, with it giving feedback every time he turned his head or rolled.  But, with the help of the Hannah Anderson "Pilot" hat, we have worked our way up to 6+ hours each day.  They seem to help, but we still know it could be better.  These hearing aids are set at very conservative levels since we still don't know his exact hearing loss.  

We went to the ENT Doctor last week and she was able to finally see in Nate's left ear canal.  She got quite a bit of wax out and then could see to the drum.  She does not think Nate has any fluid in his ears, so we will not be getting tubes at this point.  Now that we know he doesn't need tubes, we are cleared to go in for another sedated hearing test.  This is scheduled for 1pm on Nov 20th.  After that, we should know his true hearing levels and be able to get the aids adjusted accordingly.

Heart

We went in last week for Nate's 2nd echocardiogram.  There is a valve in the heart that is open in utero and is supposed to close at birth.  When we went in at 6 weeks, it hadn't closed, so they asked us to come back.  It still hasn't closed, but it does not appear to be affecting the heart.  Our cardiologist does not feel it is necessary to perform the procedure to close the valve at this time.  We will go back when Nate is 3 and see how it looks then.

Feeding

We're working on this.  We FINALLY had a county speech and feeding therapist come out to the house (after a 2 month wait!) last week.  I just felt at such a loss on how to feed Nate since his tongue just pushes everything out.  She gave me some great exercises and tips, so I feel much more empowered now.

Gross Motor

Nate continues on his slow, steady path.  He is rolling all around, transferring his weight while on his tummy, reaching for toys, holding his bottle (at times), pivoting on his tummy, doing a little bit of prop sitting and holding his head up very well.  Nate has an opposite challenge than most babies with Down syndrome.  Most have very week muscles on their front side (flexors) and stronger on the back (extensors).  So, this means Nate loves to lie on his back and stick his feet in his mouth and roll around.  But, it means it's very challenging for him to sit up straight.  We have started using kinesiology tape, which we tape in a certain position on his back so that if he slouches it gives him a reminder to lengthen his spine and sit up.  This seems to be helping, but I'm imagining we have a few more months before he will be able to sit up on his own.  In the meantime, I'm just enjoying this elongated "baby" time - don't we all always say the baby phase goes too fast with our typical children?  This is my chance to truly appreciate it!

Social

This is the one area Nate is not lacking!  Nate is extremely social.  He has excellent eye contact and always wants to be around others.  He is magnetic!

Okay, I think that sums it up for now!

Thanks for reading!

-Danielle

A Nuzzle says a thousand words

I wish I'd had my camera this morning. If I did, I would have handed it to any passerby at Trader Joe's. Cody was at preschool, so Nate and I went grocery shopping.

I think I've turned a corner recently. The corner I'd been looking for on that long, narrow path I've been walking for 9 months. I really wasn't sure when I'd find this turn in the road. But, I really think I have.

So, there we were in TJ's. I had Nate facing outward in the Bjorn and was wearing him proudly. Yes, I saw a few of the "oh, poor woman" glances, but mostly I got really kind smiles. But after about 10 minutes, Nate had no interest in looking around. He began searching for me. I didn't have his hearing aids in, so he couldn't really hear me and just had to feel for me. So, he turned his head as far as he could and looked up. I kissed his forehead and he just nuzzled right in. Awww, it felt so goooooood. He just kept stretching that thick little neck of his to try to get just a little closer and nuzzle more. I paused in the dairy section and just soaked it all in. I nuzzled right back.

For a moment, I thought I should turn him around to face me so we could continue our lovefest. But, I didn't want anybody else to miss out on his sweet face and smiles.

This is such a huge shift from those first weeks after he was born. I have such clear memories of keeping him concealed in his carseat while I was out and about. I was embarrassed to be his mom. I'm not saying every day is a walk in the park or that I don't still get sad, but I am saying I see little Nate differently now and am proud to be his mom.

- Danielle

Thoughts on "Glee"

With the Fall TV Season starting up, I've heard a lot of hype about the new show, "Glee". So, I watched a couple of episodes and am left questioning if I should watch it again. Yes, it's clever and entertaining, but I'm finding I have a new hot button that may just cause me to press the off button.

So far I have heard at least 3 negative comments about "special ed" kids. The Glee club is made up of those who are supposedly the outcasts of the school and they have several times made comments that the kids in special ed have more talent, more attention, etc than they do. This is obviously done in a derogatory manner.

If I just turn the show off, what good does that do? But am I being too sensitive or should I speak up? Yes, the show pokes fun at other "atypical" groups, but this is the one that really doesn't settle with me.

Any thoughts? Do I do something about this?

-Danielle

Hearing Aid Update

(In order to keep his hearing aids on, our Audiologist suggested getting these Hannah Anderson Pilot hats)

First, to review our findings in regards to Nate's ears.

After 5 hearing tests, we are still unclear as to the exact amount of hearing loss Nate has, but it is believed that he has moderate loss in the right ear and moderate to severe in the left. So, for him, it's like hearing underwater. He hears lower tones, better than higher. A couple of reasons we're having a hard time getting an accurate read: 1) His ear canals are extremely small (even smaller than most kids with DS) and 2) We think he has fluid in his middle ear, but cannot put tubes in yet because his canals are so small. So, he has some degree of both conductive (can be fixed) and sensory-neural (permanent) hearing loss.


Of course, for speech development, get Nate's hearing at its optimal is critical. What we've decided (along with several audiologists and our pediatric ENT) is to get him fitted with hearing aids adjusted to accomodate for the fluid in the ears and then re-evaluate in another month or so to see if his ears have grown enough to see inside the ear and potentially put tubes in. He will then have another sedated hearing test (ABR) and then we can get his hearing aids adjusted for that level of loss.


So, we picked up our temporary hearing aids on Tuesday. Fortunately, the clinic we are working with has loaners, so we can use theirs at no charge until we get a final reading. This will likely be after Nate's 1st birthday and will also be in 2010 when insurance will begin to be required to pick up the very expensive tabs on the hearing aids - amazing!


Unfortunately, the ear mold (the part that goes inside the ear) was already too small when we picked them up on Tuesday. It's a bit of a trial and error system....between the time we get Nate measured for the ear molds and the time they get them made and we get back in to the office, it is 2-3 weeks. Nate is growing so fast right now, that his ears are already bigger and so the molds don't fit snugly. So, we got measured again and will try again in another week or so. The left ear (the very small one) doesn't fit at all as it has to be a nice fit to not give that squealing feedback sound. But, the right one fits a little better, so we're trying to put that one in when we can. The tricky part is getting it to stay in. Since much of his time is spent rolling around on the floor, it makes it tough to get any good time with them in. We basically just put them in when we are holding him or he's in the high chair, so he's only getting about 30-60 minutes each day.


It's clear Nate can hear quite a bit more with the aid in, so we are encouraged!

-Danielle

Help with Feeding, please!

(here's our sweet little guy playing in his high chair - we hope he'll be eating there soon!)

This post is probably more geared toward those of you who have children with DS or are well versed in feeding therapies...



I NEED HELP!

Since going to the National DS Convention, I feel really lost about how to start solids. I've been instructed by our EI PT that we should wait a little longer until Nate has more upper trunk stability, but then what? I've given Nate tastes of things and have experimented a bit with a spoon, but I just don't see how I'm supposed to do this.

So, you'll probably say that I should go to a therapist for help...here's where I get totally paranoid...at the convention I went to an all day workshop on oral motor therapy with the woman who invented Talk Tools, Sara Rosenfeld-Johnson. She very clearly expressed that many therapists are not treating children with DS appropriately. Either they are doing the same therapy with all OR they just have low expectations (one friend shared that her therapist said that it's "normal for children with DS to not really chew and that was just how it was". What??? Hello, choking hazard!).

So now I don't know who to go to. How do you know that the therapist you are working with is doing the right thing (ie/ not pushing the tongue in, etc)....

On the few occasions that I have actually tried to spoon feed Nate, I put the food on the middle of the tongue and just sort of held the spoon there. All Nate did was look at me funny and stick his tongue as far out as it could go....what am I supposed to do with this???

If you have any ideas for me, I would really appreciate it!

Thanks so much,
Danielle

Sad AND Happy

Today Nate is 8 months old. A twinge of sadness accompanied the day, but not much more than a twinge. Just that feeling of, "wow, 8 months ago today my life changed dramatically".

A lot has changed since New Year's Day. I'm now outnumbered 3 boys (including Bob, of course) to 1. I am just now starting to get into a good rhythm. I think this was the biggest thing I was struggling with - I just could not find a rhythm with the two boys. Cody is a very predictable child and sleeps 2-3 hrs during the day and 11-12 hours at night - yes, he's a dream child! But, Nate has been really, really tough. Okay, well, mostly tough. He has slept all the way through the night from day 1 (one of the benefits of DS), but daytime has been crazy with no consistent naps until the last couple of weeks. Nate is FINALLY starting to sleep most days and I have figured out that if he doesn't get a nap around 9 or 10am, he WILL NOT sleep the rest of the day. And when this happens (which had been the case for 7.5 of the last 8 months), I feel like I'm going to go crazy by the time Bob gets home. So, I'm doing whatever it takes to get him that morning nap - mostly wearing him in the Bjorn while I go about my business. Movement seems to be what he needs to help him sleep during the day. So, if I get him that morning nap, he'll likely go down for an afternoon nap too!

Something more abstract that has changed in these past 8 months is my perspective. No, I'm not anywhere near to so many of the moms who say they wouldn't trade their child with DS for the world - I still would. But, wow does my heart just melt when Nate smiles that full-faced grin. It's a start.

As far as the sadness I expressed in my last post...it's still there, but it's not as sharp. It's a dull, underlying pain that I just carry around with me. It's that sense that a dream has been lost. The sense that I know in my heart of hearts that all is going to be fine someday, but just wondering when that day will come. But, I learned from a friend in pain a couple of years ago that it is definitely possible to feel deep sadness AND great happiness AT THE SAME TIME. I can feel sad that Nate has DS (and all that comes with that), but happy to have 2 otherwise healthy boys, my own health, a great husband, wonderful family and friends, a warm and loving home....and so much more.

Sad AND Happy at the same time. Not one covered up by the other, but in a careful balance, coexisting. You should try it sometime - it feels deeply real and human.

-Danielle

Sad...again...still

I've been sad lately...really sad. I'm beginning to wonder if I'm experiencing some post-partum depression, but when I look at the "checklist", I don't meet the criteria for the run of the mill ppd. So, am I just experiencing the expected sadness anyone has with the loss of a dream? Is this normal?

It seems to me that so often, other moms with children with DS are so positive. They don't seem to have the kind of sadness I have. They seem to have found the joy in their child. I am still looking for it...Yes, I know there are a lot of things that could be worse, but this is my reality and it's one I never, ever expected to be living.

Nate still can't hear me, so even talking to him doesn't make a difference - I get no response. The only time I get a response is when I make funny faces or give him a bunch of kisses on his neck. We've finally been fitted for hearing aids, so he'll have those soon. But even the thought of hearing aids is overwhelming to me. Take them out every time he goes to sleep or takes a shower/bath. Change the battery every 10 days. And then there's the concern of if they'll even stay on his tiny ears. Oh, and the audiologist said to expect to visit the ENT often to have Nate's already impossible ear canals cleaned out (nobody has been able to even see in his left ear yet!) - it turns out putting plugs (hearing aids) in small canals that tend to accumulate buildup anyway is not a good idea, but that's the choice - ear infections and cleanings OR very limited hearing.

He is almost 8 months old and his activity is still so limited. I feel like I spend the day moving him from one place to another to try to continue to stimulate him - he just gets bored since he can't sit up or move around on his own. And I can't use the items that were good for Cody - they aren't good for Nate's development. So, no jumpers, walkers - anything that spreads his legs apart or promotes an activity that he is not ready to do on his own. So, that limits the options.

And then there are the napping issues. Nate is a champion sleeper at night, but daytime is a different story altogether. He may take a 30 minute nap in the morning if I'm lucky, but then will go the rest of the day without sleeping. So, he is a complete pill the entire afternoon - fussing and crying and only happy if I hold him. At that point in the day, the last thing I want to do is hold him. My mom keeps encouraging me to figure this one out - I didn't realize how much it was really affecting me. Thanks Mom.

Okay, that's my rant for the day. I'm having a tough time.

To my friends who have called or emailed, I'm sorry I've been distant. To my dear sweet husband whose been incredibly loving - I'll find my way back to happy.

Please be patient with me.

-Danielle

Mondays - My new day "off"

Since my last post, I have really been thinking about the balance of trying to just appreciate Nate for who he is and making sure I'm taking care of all of his needs. I've had some really sweet time with him this week and am looking for ways to stay in the present.

What I've realized is that therapies, research and making appointments are what really pull me away from this great place with Nate. So, I've decided to try to take a day "off" from DS stuff each week. I think it will be Mondays - those will be my days to just really focus on who Nate is and appreciate his sweet, developing personality. I will not be distracted by therapies, rushing to appointments, reading other blogs, researching, etc. I will simply love on Nate.

One other thing I am going to try is to have one set time to make DS-related phone calls each week. So, I'll just make a list and make all of my appt calls on one day.

I'm excited to try this new approach and hope it will help me to start my week off by remembering that Nathan is a baby, not a syndrome! (I heard that from someone at the conference and thought it was great!)

-Danielle

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

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

More Smiles

For quite a while Nate's smiles have been sporadic at best. Now they are finally beginning to come pretty regularly and we are finding we don't have to make complete fools of ourselves to get them. He gives us full face grins which are so great! We're finding he really loves dancing - smiles come quickly when we turn up the tunes and dance around the kitchen with him.

Many have asked how Nate is doing. It's such a hard question to answer. I do have checklists and lists that give ranges of when to expect certain milestones, but how do I really evaluate how he's doing? Well, this is what I know....he is responding very well to his exercises. His upper body strength is definitely improving and he's tolerating tummy time for longer periods each day. I counted to 34 seconds today as he held his head up in tummy time. He is also rolling from his back to stomach very easily. He continues to sleep well at night and not so well during the day. We still don't trust his hearing tests and will go back again for another test next month. He just doesn't respond to us like we would expect - we think he likely has hearing loss for higher tones - we notice he responds much better to Bob's voice than mine.

So, how is he doing? I think pretty well! He's making progress and that feels good!

-Danielle

Yes, People Notice

I went for an early morning walk with Nate this morning. It was a beautiful, crisp morning and Nate was enjoying looking at the trees while he snuggled close to me in the bjorn.

About halfway through our 45 minute walk, we met up with Harrison. Harrison is probably in his mid to late 80's and lives with his daughter and son-in-law. I hadn't seen him since the fall when I was doing my early morning walks to ease the back pain I experienced with pregnancy. Harrison likes to sit in his chair at the front of his driveway, read his newspaper, drink his coffee and talk with anyone who slows down enough as they pass him. I've enjoyed many conversations with him and always hope he'll be sitting there as I turn the corner to his street. Honestly, I was starting to wonder if he was still with us, so I was relieved to see him this morning.

I stopped to talk with him and he quickly alerted me that he did not have his hearing aids in this morning. Our conversation went something like this (with a lot of "huh", "what's that", and "could you repeat that dear" in between):

"Good Morning"

"Good Morning. Let's see your baby."

I pull back the hood on the sweatshirt Nate has on.
"Is he an oriental baby?"

"No, he has Down Syndrome."

"Oh, like the Governor of Alaska's baby?"

"Yes."

"Did you know ahead of time?"

"No."

"Would you have done anything about it if you did?"

"No."

We tried to talk a little more, but he was starting to get frustrated that he couldn't hear me well, so we agreed we'd talk again when he has his hearing aids.

So, this was the first time someone actually came right out and asked me about Nate. Sure, it wasn't the most PC way, but I just chalk that up to the fact that he grew up in a time when people like Nate would be shipped off to institutions.

Anyway, I can honestly say I had kind of convinced myself that others don't notice Nate's almond-shaped eyes (and flatter face, protruding tongue, crinkled ears, low muscle tone, etc). So, this morning was a good reminder. A reminder to be aware of the awkwardness that so many feel as they meet Nate. Most don't have the guts to just put it out there (I know I never did), but are certainly thinking that there must be something a little different about Nate.

I still haven't quite figured out if I just throw it out there anytime I introduce Nate, but I certainly want to be sensitive to sharing it if I see someone wants to ask, but is not sure how.

Surprisingly, my conversation with Harrison did not make me sad this morning. It actually felt good to have him say something so I didn't have to. I think I wish more people would just say something (with a bit more tact than Harrison, of course) so it didn't feel like the elephant in the room.

-Danielle

The Silent Type

I never have been attracted to the silent type. Now I'm truly being tested as I live with one.

I was at Target with Nate last night getting stuff for Cody's potty training day today (he's napping now, so I'm getting a break from the festivities). Anyway, Nate was in his carseat perched up on top of the cart and we were having a fine time shopping. I was almost done and feeling good. Then, I walked past another woman who had her infant perched as Nate was. She was looking in at him and they were carrying on the sweetest conversation. It seemed like he was just exclaiming everything - such volume and joy in his little voice.

I walked out of Target a bit sad and the sadness is carrying through the day today. The sweet sounds I hear from Nate are few and far between. I'd say his cries and complaints far outnumber the sweet sounds. So then I start to wonder - does this mean anything. I've often heard that children with DS are quiet, but how quiet? Is Nate even quieter than his counterparts?

Communication continues to be my biggest concern for Nate's future. Will he be able to express himself clearly enough for others to understand? Does his lack of communication now have a direct correlation to the success of his communication later?

I think only time will tell. God, grant me patience...please.

-Danielle

"Undersnake"

I just wanted to share a quick laugh from my time at the park yesterday. I was there with the boys and Cody asked to go on the swings. After settling him into the "baby" swing, he quickly requested that I give him an underdog (you know, where you push the swing as high as you can and run forward under the swing).

"Underdog, Mommy!"

I gave him an underdog.

"Undersnake, Mommy!"....he went on to ask for underelephants, undertigers, underlions.

It was one of those sweet moments I hope to remember for a long time.

-Danielle

Family Photos

We went to get family photos on Sunday and it turned out differently than I expected.

In the past, each time I'd seen pictures of us with Nate, I'd had a hard time. I don't notice his DS features as much anymore unless I see him in a picture. So, I was not at all looking forward to family pics.

But after we saw the pictures, both Bob and I felt much better. We saw our sweet little guy in a new way. We looked at those pictures and said, "this is OUR family".

It's still not the family picture we imagined, but we are settling into this new picture more and more.


-Danielle

Smiles for Mommy

Right after expressing my sadness about Nate's lack of Mommy smiles, our early intervention specialist witnessed Nate's first real smiles for me today. Wahoo!!! I haven't been able to capture one on camera yet, but as soon as I do I'll post it!

Nate is 4 Months old today!

-Danielle

Tough Thoughts

Nate is now almost 4 months old and I still struggle quite a bit from day to day. Some days I adore him and other days I just want to hit the rewind button and try again for a typical child. Today is the latter. I have just never faced a "trial" that I didn't see the end to...right now, having Nate seems like a huge burden to me. He still isn't smiling (very, very infrequently, but never at me) and that is really taking its toll on me. It's the first real test of how patient I can be with these delays he will continue to experience. I just feel like I will be able to connect with him more once he starts smiling...

Last night, Bob and I were watching Gray's Anatomy. A father was sitting by his 6 year old daughter's bedside and basically waiting for her to die. I said, "That would be so hard to lose a child." and Bob asked very insightfully, "Which one?". Ouch. That hurt. It hurt because it is truly the kind of tough thought that runs through my head each day. I have to admit that it was easy to recognize that it would be devastating to lose Cody, but part of me felt it would be a relief to lose Nate. What kind of parent thinks that way??? I just can't help it....it's there and I'm admitting it. So many in this community of parents who have children with Down Syndrome say that our children with DS will bring such joy into our lives, but they haven't said when that will happen. I'm waiting and hopeful.

-Danielle

"Naked" Time

So I read recently that it is good for babies to have as much skin exposed as possible. We've had some warm weather recently, so I thought I'd give Nate a chance to maximize his sensory input with some naked time. Unfortunately, he still has the grasp reflex going on and hasn't learned how to let go. You can see this in one of the pics where he is grimmacing as he pinches himself one more time!

I am doing a lot better with Nate's physical therapy - learning that it's stuff I can do while I'm doing other things and not feeling as overwhelmed. I try to move him through many positions throughout the day (back, tummy, side-lying, supported sitting) and am working hard to encourage him to interact with toys and to develop both sides evenly (he tends to like to look, kick and move to the left). I've been a lot more intentional with his therapy lately and can see the difference. In this picture you can see him reaching up and interacting with 2 different toys - big deal!
The little guy still isn't smiling much, but I can really see the smiles in his eyes and hear it in his coos. Fortunately, we get a lot of smiles and laughter out of Cody!

-Danielle

Early Intervention

Therapy with a 3 1/2 month old? Yes, we're doing it and it's very important. Right now it feels TOO important and I feel terribly behind in the work Nate and I should be doing together. At this point the county sends over a physical therapist 2x/mo for an hour and a special ed teacher 2x/mo for an hour. The PT works with us on ways to help strengthen Nate's low-tone body and the special ed teacher works with us on ways to stimulate his brain and ways to integrate Cody into the process. The time with these women is very valuable. I'm not necessarily learning anything that earth-shattering, but I'm finding the consistency of their presence helps keep me accountable to spending time working with Nate (I don't want to be the one who didn't do the assignment!) But, right now I just feel overwhelmed. I feel like this is the easy stuff and I can't even find time to get it done. Yes, I could do these things with Nate each day, but then who does the laundry and dishes??

Okay, one day at a time, one day at a time. Breathe.....

Worn Out

I haven't written in a while and don't have the time to right now, but I wanted to get this video up. Nate had finished his physical therapy for the day and was playing on his mat and just passed out. It was so loud but it didn't affect him. Oh, be sure to catch Cody talking about "sitting on the potty" - he's been practicing lately.
I'll write more again soon!
Danielle

The Lingo

There is a steep learning curve when you are suddenly thrust into being a parent of a child with special needs. One aspect of this has been learning the lingo that is accepted in this community.

Today is "Spread the Word to End the Word" Day. The word: "Retard"
http://www.specialolympics.org/03-31-09_Spread_the_Word.aspx

So, I'm spreading the word.

Please, don't EVER use the R word - it's old and it's hurtful. Instead, use mentally/intellectually/emotionally disabled or challenged.

A couple of other things I've learned. Instead of saying Nate is a Downs child or Down Syndrome child, a better way is to say he is a child with Down Syndrome. Down Syndrome does not define who he is (although I may feel like it does at this point), but is a part of his make-up. (A very old and ugly term used for people with Down Syndrome is Mongoloid - yuck!!!)

And when describing Cody, the accepted term is "typical" versus "normal".

So, I beg you....help your families and friends to begin to use terminology that is more sensitive so that when Nate is older, he won't have to hear those words.

Thanks!
Danielle

Hearing Test #4

As many of you know, we've had a hard time getting a read on what is really going on with Nathan's hearing. He didn't pass the test in the hospital, so 2 weeks later we went to an audiologist for a follow-up. In that test, the left ear passed and the right didn't. We went back again at 7 weeks and it appeared neither ear was passing and he may have permanent hearing loss in both ears and need a hearing aid. So, for the past 6 weeks, we've been expecting to have to deal with the hearing aid on top of the other challenges Nate will face.

BUT that's not the case.

Today, Bob took Nate to his 4th hearing appointment and both ears passed in the normal range! Praise God!!!

The reason this has been so tough is he has VERY small ear canals (which is common in children with DS). His hearing may actually be even better than they tested today. He's been congested for quite a while so some fluid and gunk is stuck in the middle ear. So, we'll go to an ENT doctor and get his ears cleaned out (this will likely be something we'll have to do often since his ear canals are so small - his right is actually about half the size of the left).

We will need to continue having his ears checked each year, so prayers for his hearing are appreciated. Clear hearing is so important in speech development, so we're hoping his hearing will stay as they are or even get better.

-Danielle

Better Today

It's Friday night and I'm exhausted. As I sit here pumping one last time for the day, I reflect on how much better I feel today than I did at the beginning of the week. Today I was able to appreciate the sweetness and beauty of our Nathan. I took many pictures and had some great snuggle time with him. He is such a sweet little guy and I am appreciating that today.

I'm going to try really hard to live in the now as much as possible. Yes, it's necessary for me to look ahead some to make sure we're getting the care Nate needs in the time he needs it, but I do have the tendency to look much farther ahead than necessary. Here are some pictures I've taken in the last couple of days. Nate is starting to smile more, has found his hands, is starting to suck his thumb and cooing a lot at his little toys in his play gym.l It's hard to believe he's already 3 months old.

-Danielle

Overwhelmed

I'm feeling very sad and overwhelmed tonight. I just have had a sinking feeling all day that I am missing something. I feel like I'm terribly behind in Nate's therapies and care. I'm doing the things the early intervention people have told me to do, but I just know there is more. I've been reading about these programs (neurodevelpment programs) out there that do an intense assessment and set up an aggressive program for us to follow to set Nate up for the greatest success. Of course, these are not covered by insurance and are very expensive. So, I need to spend every moment searching online and reading books to try to make sure I'm doing everything possible.

I barely have energy for Cody right now, so I have that guilt piling up on top of the "not-doing-enough-for-Nate" guilt.

I'm sad....very sad.

-Danielle

Brothers

When we found out we were having a 2nd boy, I must admit I was a bit disappointed at first. We were pretty sure 2 kids was going to be our max, so my dream of having a girl was quickly slipping away. But, after just a short period of adjusting to the idea, I was very happy for Cody to be gaining a brother. Both Bob and I basically grew up as only children (I have half-siblings who are much younger than I) and felt strongly we wanted Cody to have a sibling - it seemed to us that giving him a brother would be a huge gift.

But now our picture is so much different than we imagined. The relationship Cody and Nathan will have is not what I had expected. Cody will likely feel a big responsibility for his brother and could eventually even need to care for him. They will not relate to each other in the ways typical brothers do. But, I also know each of their lives will be enriched greatly by the other. I hope Cody will learn a depth of compassion from being the big brother to Nathan. And I hope Nathan will learn to acheive more than expected because of Cody's encouragement.

No, this is not the picture I had in my mind, but I'm hopeful we'll see the beauty in it as it develops.

-Danielle