Early Support - Helping Every Child Succeed - UK

A UK Site:  http://www.earlysupport.org.uk/decMaterialsZone/modResourcesLibrary/HtmlRenderer/Dev%20journal%20Downs.html

I think the UK must be leading the way in Ds... or I'm sadly not finding the latest interesting info on the internet for Ds.  I did like their website very much and I've found some other UK sites with more caring information than could be found in the US.  Please see their Early Support News:

http://www.earlysupport.org.uk/decNewsZone/modResourcesLibrary/HtmlRenderer/News1.html

I downloaded the entire 11 step Journal, I'm excited about using this, I hope others will be.

Gentle Brittney

We have this wonderful "mutt" reddish cattle dog type DOG that I swear will purposely come over and sit on you making sure to place her little doggie elbow right in the center of your bony unprotected foot. 

This is the same dog who will step lightly around the baby and not ever even bump into him or harm him in any way.  She is very cautious with her little friend.  Brogan loves Brittney and he smiles whenever she comes to lay down beside him.  She lets him touch her fur, play with her ears and grab her tail.  She kind of draws the line when he touches or grabs for her feet and will get up and walk away.

My husband took this picture of a tired "played out baby" in his play area and his gentle guardian Brittney.  You can tell she's not sleeping, just sucking up some "baby love".

The View from Our Kitchen Window

From my kitchen window I see - a steep hill covered with brush staring back at me.  Every once in a while though, I get the pleasure of seeing these guys napping and eating on the hill.

Here you can see the "arm" of my kitchen faucet... 

Here is one of the babies taking a nap on the hill.

From my kitchen window you can see how close they come to the house.  It's a surprise some days to look out and see a deer grazing right next to the house!

Finally - a new rig

So we thought we bought a Dodge Durango two weeks ago, until the bank decided not to approve of my loan.  What?!  I sent them all of the information they wanted - but the GAP insurance company would take 30 days to take care of the claim.  Even though they faxed the Dodge dealership the information they requested, even though.... blah blah - just didn't matter in the end.

I thought we were approved when we drove off the lot with the Durango.  Apparently I was mislead.  So, today I had to take it back to the dealer.  

We'd been looking on Craig's list for a vehicle to buy when we found out about all of this.  Dusty got ahold of the person selling a Chevy 4x4 that I liked.  

I asked Dusty last night to please get the deal done and get me into the rig today!  Otherwise, he'd be driving me to work early in the morning and then dropping Audrey off to school.  That's a whole lot of inconvenience for my kids and my husband.  More than I want to put them through.

Dusty got the deal done today, and I have this beautiful monster truck to drive.  It goes right up our driveway with no problem!  I love it!  I think it's gorgeous too.

Goodbye old friend

Roscoe

We lost Roscoe this last weekend to intestinal cancer.  He was a great dog, and the family loved him and all of his quirks.  Audrey is sure that his soul is sitting on her shoulder.   The vet was very gentle with him and he passed quietly. 

Goodbye Roscoe, I will miss your wheezing at night, I'll miss your excited "talk" and your hard head when I stepped over you.  

Always and Forever

I was probably 14 years old the first time I heard this song.  It was probably at the skating rink.  I thought to myself if I could find a person to sing this to with all of my heart I would be happy forever.  It's taken me forever, but I've finally found that one person - Dusty.  Now, because of Dusty and my children, I can sing it to my heart's content, and no one boos.  I'm not the best vocalist, but my husband and my children do love it when I sing to them.  I love this song.  I have loved this song since I heard it the very first time so long ago.

One of my most favorite and the best loved songs in the world, this is the Original and the ONLY version worth hearing:

Johnnie Wilder, Jr. (Johnnie James Wilder Jr. 3 July 1949 – 13 May 2006)^[1], was the co-founder and lead vocalist, of the international R&B/funk group, Heatwave. Heatwave wasa a  popular group during the late 1970s, with hits such as "Boogie Nights", "Always and Forever" and "The Groove Line" on which Wilder sang co-lead vocals.

In February 1979, a van struck Wilder's car, paralyzing him from the neck down and hospitalizing him for a year.

During the 1980s and 1990s, Wilder went on to record other albums with the group and later began a gospel career, singing a cappella on albums My Goal and One More Day.

He died in his sleep on 13 May 2006 at his home in Clayton, Ohio, a suburb of Dayton at the age of 56. The cause of his death is unknown.

Forever and Ever Amen

Just Us

Here's our average every day fun evening.  We play with the baby and we play with Audrey.  Audrey, Dusty and I read a lot of books together too.  We're pretty boring, but I love this video.  It's JUST US.

Then MY car crash - a miracle

As if Saturday's shake up was not enough, fate decided to pay our family another visit.  On my way to work Monday morning I encountered black ice on the road.  The first patch I navigated successfully through, and I was going fairly slow when I hit the second patch.

I was terrified as I made the decision to head more to the center of the road instead of the right side where there was an extreme drop off down into Cherry Valley and no guard rail.  I thought I may be able to right myself again and slowly make my way to work.  I saw that I wasn't going to get out of this.  So I put my foot on the brake, braced my other foot and gripped the steering wheel.  Then I said "Oh, Dusty this isn't going to be good".  

I slammed into the hill on the left side of the road immediately after that.  

The ride wasn't over YET as the car rolled over onto it's top and spun around.  After I hit the embankment and the car started to roll over, I don't know what I thought - my survival instincts must have kicked in.   When everything stopped moving I found myself hanging upside down with the seat belt holding me in place.

Frantically I tried to figure out which side of my body the seat belt latch was.  I was upside down and couldn't find anything.  When I found the seat belt latch, I braced myself with my hand on the roof and my knees under the steering wheel to keep from falling on my head.  I released the seat belt and still bumped my head, but not too bad.  

Next thing to do was to get out of the car.  I couldn't believe it, but the car was still running!  I turned the key off, but couldn't figure out why the keys wouldn't come out of the ignition so I left them there.  I got to the door and tried to open it.  It wouldn't open.  I looked to the back of the car and then a flash of memory helped me understand that the doors were still locked.  The car was still in gear.  

I had pounded on the glass when I saw 2 men standing outside of the car, kind of watching and wondering what they should do.  I mouthed, "I can't get out", but before they moved an inch I unlocked the door and was so relieved when it opened freeing me from the trap.

The bystanders were stunned!  They didn't expect me to come crawling out of that wreck unscathed.  But sure enough, I was just shaken and not seriously injured.  I had some sore muscles the next day for sure.  I got out of the car and looked back inside of it very much wanting to find my purse only to remember that I'd left my cell phone at home that morning.  I did eventually find my purse - it was on the other side of the car looking like someone had picked it up and put it down in the road for me.  It had been open on the passenger seat and every time it has tipped over everything always falls out of it.  This time though, everything was still tucked inside.  It was amazing.

This was not the end of the ordeal by any means.  Now the Fire truck, EM Ts and police needed to be called in.  A sweet bystander let me use his telephone to call my husband.  I told him "I'm OK sweetheart, but I've been in an accident and the car rolled".  He was on his way with the kids.  I knew Audrey would freak out when she saw the car and she did.  I assured her when they got there that mommy was OK.  Mommy was so OK she was strict and grouchy and bossy and then sorry and hugging her.  Audrey did feel much better after all of that because she could see that her mommy was indeed OK! 

The accident happened at about 8:10 in the morning, and we got all done and finally home by 10:30.  Let me tell you - accidents take a long time.  

When the King County Sheriff finally arrived he was very upset/excited.  He saw the kids in Dusty's car and thought they had been with me in the accident.  They weren't thank goodness!  When I let the sheriff know it was only me, he got very stern and told me he was going to give me a citation for driving too fast.  I had a confused quizzical look on my face, because I knew I hadn't been driving very fast at all!   It turned out that after the sheriff tried to move his car up the road and couldn't get any traction he decided not to give me a citation.  Oh thank heavens!  I heard the firemen and the Duvall police talking about the call they just made to the sanding trucks to get out to Cherry Valley road because of the ice danger.  People were very surprised - they didn't know who the "victim" was simply because I was standing there and looked as O.K. as any of the witnesses.  

I was cleared by the EM Ts, the Sheriff declared it a no-fault incident, and the tow truck arrived to clean up the mess.  I called my boss, and called my co-worker to get the news out that I wouldn't be coming to work that day.  Then I spend the rest of Monday and all of Tuesday hugging my kids and my husband and thanking my lucky stars to be walking around and OK.  

I only hope we can get another car for me to drive to work.  Dusty is working on fixing his truck so I can use that until we find out what the insurance company says.  

I was back to work today, and when someone asked "How are you?", I said "I'm so happy to be here" and I meant it.   

Audrey's Eye Exam

Saturday - after the ordeal of the tree hitting the truck (and knocking out power).  We did continue on with the plan of the day.  Get Audrey to the eye doctor.

So it turns out my beautiful daughter has the eyes of her father.  She'll be in glasses all her life with 20/50 in one eye and 20/80 in the other and astigmatisms for both.  

Looking at frames for her glasses was very exciting for Audrey and she loves the ones that she picked out.  She had her choice of any kind she wanted of course.

That brought back memories for me... I saw the row called "Youth".  They were in the 10 dollar range.  Those were the frames you could pick out if welfare was buying your glasses.  Those were the frames that I had to choose from when I was a child.  I would just die if I had to do that to my daughter.  She is fortunate to be able to pick out the super cool Hanna Montana purple frames that make her look like a movie star!  I'm so happy that I can give her that - and even if I couldn't afford it, I would just make it happen.  I'm so sick that I would give it to her anyway.

I can't subject her to the attitude that my parents had toward me.  Audrey is beautiful, she can have any glasses frames she wants to make her feel like a superstar.  I wouldn't want to destroy a beautiful girl's dreams by telling her she has to choose UGLY frames, and oh by the way - the super unpopular girl in school already is wearing those frames, so don't even try to fit in.

Well my parents moved a lot of times.  After suffering welfare glasses and suffering with going to school and seeing the other girls with the same frames I vowed I would never let my child be so mortified, humiliated or embarrassed as I was.  I guess I was too sensitive - but HEY - if you want to criticize me, walk a mile or two in my shoes OK?

I know it sounds ungrateful to my parents and I must have been some vain shallow teenager (I was actually their slave, housekeeper and babysitter and a straight A student), but it hurt me a lot - I should be happy I even got glasses to begin with.  But as a girl there should be something that lets us be selfish about our looks.  As a parent, I know that I am trying to instill confidence for Audrey in how she looks - how she wants to wear her hair this way or that and how she wants to wear some weird clothing combination.  She is my darling and I won't hold her back by telling her she has to wear ugly glasses!  

I just refuse!  Wait till you see the pictures, she is so cute in her new glasses!!!  Come on - money is money and it spends on Ram en noodles just as well as it spends on something your daughter wants very much.  I can't deny my kids the GOOD stuff.  I'm seriously fucked up because of my childhood, but I really want my kids to have all of the normalcy's, to be spoiled rotten, to not be held back by "my mom (dad) can't afford it, or won't let me because they can't afford it".  ACK, that is the worst thing for a Kid!

I guess I am shallow.  I got hurt, and don't want my kids to be hurt by monetary descrimination.

My priorities are my kids' happiness and well being.  My kids always look their best and feel great when they go out.  This confidence builder has no price tag.  I only wish my step dad had the common sense to see that it didn't matter if we lived in a tent as long as our clothes were clean and our style was cool.  I could care less about how he felt about feeding us - because in all fairness, he didn't feed us, the state did.  I thought and still feel that he was a very selfish man.  That is a WHOLE big can of worms... that I may write about sometime.

The season of accidents

This has been a terrible last few days for us.

First Dusty was clearing trees from the property that were hanging low over the power lines.  He'd made great progress too.  Then as I was coming down with the kids in the car to help him out - he was working on a very dangerous tree.  

Before I had the words... "it's going to hit the power line" out of my mouth, there it went.  The tree hit the power line.  And where DID that white F-150 truck come from?  The tree landed on the truck's windsheild, jarring and startling the woman driving it.  

It was a foggy day, cold and still.  Dusty called 911, and aide cars, firetrucks and the sherrif all arrived.  

It was all very scary - and I'm sure especially so for the woman in the truck.  We were so worried and scared.  She was checked out by the aide car and seems ok.  Thank goodness.  

For us - another financial obligation to be met.  

Joy Boy

Brogan is so dear to my heart and so loved by us all that there really is no seeing him as having a disability.  I call him my joy boy and above all else I love my Joy Boy, just love him so much and wouldn't want him to be any other person than who he is.

I didn't know how I would feel about having a child with Ds... but I would challenge anyone in this universe to tell me that he is not beautiful.  I love him, and I WOULD never wish him to be any different than who he is.  We really don't know what the future is for Brogan.  If being "normal" would inhibit his natural social abilities, then I need to say no thank you.  This community has wrapped him up in so much love and support that he doesn't ever need to live anywhere else.

Thankfully Santa Claus was good to us this year.  We were skeptical and afraid, but that lovely Elf gave us a holiday to remember.  Mrs. Claus came to visit with us while we were at the Duvall Tru Valu store and had many kind words to say to and about both kids.  People love to talk with us about the kids.  It seems they are so charming - Audrey is something else!  Brogan is a charmer with his baby smiles.  I do feel blessed.

Where were you hiding these!

Brogan goes after his cookie with gusto!

I was feeling like maybe I was rushing it a bit when I brought home the box of teething biscuits, but Brogan didn't think so!  I'm sure he thought I was holding out on him.

Since we've introduced "solid foods", he's lost interest in bottle feeding.  He only nurses at night now or before naps.  No more bottles mom - boob or food for this kid!

More please!

Ambulances and Firetrucks

Getting people out of Duvall to the hospital

I found out why I saw so many ambulances and firetrucks on the Woodinville/Duvall road when it was closed due to the flooding:  They were meeting the boats that our fire department have for just such an event and taking people out of Duvall to the hospital.  Article at Komo News.

Racing the Water

Trying to get into Duvall before they close the Woodinville/Duvall road

The Road is Broken!

Flooding in Duvall Jan 9, 09

No way out!

Stranded Cows

Audrey was very worried about the road being broken!

Duvall/Woodinville Road - after the water recedes, we found this picture of the damage.  The road was closed for another 2 days while they fixed it.  

We're hoping that Safeway has eggs, soda pop, water, coffee, bread, chips... food in general!  Dusty got the last two bags of Ruffles.  

Today's Doctor Visit

What a day!  Duvall has at least 2 feet of snow on the ground. 

Audrey's climbing toy - snow art

The plan was that Dusty would take Brogan to the doctor today and I would stay home, work and keep Audrey occupied.  We all know about plans!

Everything started out ok – then I got a call from Dusty.  “Bring a shovel”.  He was at the bottom of the driveway, and wouldn’t make it out onto the road.  Our driveway is a challenging .10 mile steep hill.  I ended up pushing him on the 3 wheeler up a bit of it on Sunday after he and Audrey came back from the grocery store.

After puttinng the snow chains on our trailblazer, Dusty was frozen and wet.  We all got into the car, since we were there and frozen too, except for the baby who was hot and sweaty in the car!  Daddy - so worried about him had the heat on full blast.  Ok, so after I unzipped Brogan's jacket, and dried his hair, we all got in the car and went to town.  We got to Brogan's doctor appointment 40 minutes late, but not bad.  They still got us in ok.  While Dusty waited, Audrey and I walked 2 blocks to the QFC to get her something to eat.  She was "STARVING"!  She's also a mega drama queen.  We've decided that visits to Brogan's doctor should be accompanied by survival foods because no matter what it always seems to take 2 hours.

Brogan was just supposed to get his shots today, but his breathing still hadn't cleared up from the last time we took him to the doctor, so we made sure they checked him out for that.  A little sinus infection, plus his chest is tightening up (spasms) similar to asthma, so besides the inhaler we have been using more frequently this week, they prescribed a nebulizer and amoxicillian to kick this crud!  Thank goodness.  It's been a very fretful few weeks 'waiting' for him to get over it himself.  A very sleepless few weeks too.  I know doctors are very reluctant to prescribe antibiotics at the drop of a hat these days, but he really needed it.  

Today was very challenging, bad snow, crazy drivers, sick baby and a rambunctious 6 year old!  Dusty and I are just worn out, but thankful that we got through it together.

Brittney the snow dog - 9 years old

A puppy again!

Visit with Santa

Santa visiting Duvall is a big deal – the guy taking the pictures was a volunteer from A-1 roofing, and Santa was awesome.  We think he’s the dad of the owner of the hardware store.  Then “Mrs. Claus” came and visited with Audrey and talked to Brogan too.  It’s really cool living in this little community!  The line was huge, I think everyone from Duvall was there.  

Duvall gets 12 inches

Lots of snow here!  Accumulated totals are up to 12 inches!  I'm so lucky Dusty can drive in this stuff.  We've got a 2004 2 wheel drive Chevy Trailblazer and he makes us all feel so safe like riding in a jeep 'round here!

Breastfeeding Brogan

I've read a lot about how hard it is for a baby with Ds and low muscle tone to latch on and breast feed.  Brogan had a tough beginning being on oxygen, and having low Oxygen saturation levels when he fed.  His stamina just wasn't up to the whole feeding thing, plus he was just learning all of the breathing/swallowing coordination and I understand that that can be a lot for a newborn to learn in the first place!

The nurses ended up tube feeding him and we fought like crazy to get him through one full day of nipple feeding to get the tube taken out.  By nipple feeding, I mean - ANY kind of nipple.  I knew the sooner we got him feeding, the sooner he could come home and I'd work on breast feeding him later.  

We got Brogan home, and I was reminded of the newborn days with my daughter, trying to get her started breastfeeding.  It was tough, but we were able to get the hang of it.  Brogan breast feeds quite well and has no trouble latching on.

Brogan is very lucky to have good muscle tone.  His pediatrician commented that his tone was a lot better than he expected.  

Since I work, I pump and bring home milk for him and when I am home I breast feed.  Now he is eating solid foods (baby food) in addition to the breast milk and supplemental formula.  I feel like all we do is "stuff" the baby.  With his vitamins and all of his varied foods, he is doing very well for a 7 month old.  I'm proud of our boy!  I'm so thankful too.  I love my baby so much, I'd do anything for him.  He is so beautiful and so sweet.  I can't imagine life without him now.

Brogan a little mad, but doing the Army Crawl!

Brogan has been doing the "Army Crawl" for a month or so now.  He really gets around and now Brogan's just started bouncing up on his knees.  He'll be crawling very soon!  Look out!  He's on the move!

Ewww Banannas!

What the heck was that Mom?!

Brogan loved Sweet Potatoes, and really eats his cereal well, but Bananas?!  That was the ewwwiest face I've ever seen, complete with shivers!  Dusty and I couldn't help but laugh like crazy, then we got him something else to eat.

Adventures in food are fun!  For both the parents and the baby!