Sunday, October 31, 2010

31 for 21: Day 31

We made it!  I hope you all had an amazing Down syndrome awareness month and enjoyed watching our daily life for the month.
Happy Halloween everyone!!! Thank you Grandma  Hubert for making Gabriel and Isabella's AMAZING costumes!
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Go Vikings
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Product for the day - Click here and here to view Suha's art.
Abstract art purses combine beauty and function. Original painting by Suha Khalil, a young woman from Sudan with Down Syndrome.
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Thank you for joining us though our 31 day journey and celebration!
See ya partner!
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Saturday, October 30, 2010

31 for 21: Day 30

"Don't look at me, it wasn't me!"
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"Hey, I was just sitting here drinking my bottle the whole time."
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Mom always know...
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Product of the day - My Sibling Dolls - Click here to view their site.
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My Sibling® 18" boy doll named Tommy is dressed in jeans, t shirt, socks and sneakers, and is packaged in reusable denim tote bag.  Tommy comes with a story booklet about his saving the day when his brother who has down syndrome disappears.  My Sibling Dolls are dressed and accessorized by young adults who have developmental disabilities. Story booklet and denim tote bag made in USA.  
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My Sibling® Dolls 18" doll named Mae is dressed in adorable denim jumper and turtleneck outfit, white mary janes shoes and white socks.  The optional packaging for Mae is a reusable denim tote bag, sold separately.  This beautiful doll comes with a story booklet about her favorite little doll and her sister who has down syndrome.

Friday, October 29, 2010

31 for 21: Day 29

Well, as other mothers who are doing 31 for 21 are tiring out we are warming up I guess.  I started with a lot of pictures and as we have gotten late into October I have had a lot more to say. 

We met the ENT who will be doing Gabriel's tonsil and adenoid surgery.  He is going to do an amazing job!

Gabe had both kids by himself in the waiting room until I was able to get to the appointment from work.  Due to them working us in today, we had a hour wait.  When I got there both kids were running in opposite directions.  I had to laugh when I saw the complete relief on Gabe's face. 

They went ahead and did a hearing test on Gabriel.  He DOES have some hearing loss in his right ear.  This is not what we were told by our first ENT.  We were told he could hear just fine out of his right ear but his left ear had some hearing loss.  We will meet back up with our ENT sometime after surgery to discuss what future plans are.

On this note we will be doing tubes in both ears when he is under for tonsil and adenoid removal.  This will help relieve some pressure that he has in both ears.  And get the excess liquid out from the left ear.

We have a date for surgery.  Gabriel will be having his tonsils and adenoids removed as well as tubes put in his ears on Monday, December 27th.  Currently he is the youngest surgery scheduled so his surgery will be at 7:30am, if someone younger is scheduled he will be moved later.  This is a great date due to the fact that I will still be off work for Christmas break that week. 

Gabriel will be admitted to the hospital after surgery.  He will be able to go home when he is able to continuously consume enough liquid on a regular basis so he will not become dehydrated.

A quiet evening with Grandma and Grandpa.  We are excited to not have any doctor appointments for a couple days.
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Product of the day - Snoedel - Snoedel's are amazing.  For every Snoedel purchased, Saving Little Hearts and Snoedel donate one to a child in the hospital for OHS (open heart surgery).  When gabriel had heart surgery Saving Little Hearts sent us a care package to his room.  It was wonderful of them to do that, it happened to come on a day where we needed some cheering up.
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Thursday, October 28, 2010

31 for 21: Day 28

Where to start?

On the way to Gabriel's feeding evaluation I got a call from the pediatric ENT's office.  They got us in Friday at 2.  Yes, that is tomorrow.  That is darn good turnover!  WOW!!!!

Feeding evaluation - results, Gabriel does not eat...

Gabriel's appointment was SO long and so full of information I am having trouble sorting it all out to put on here.

Many things are on hold until after Gabriel has his tonsils and adenoids out.  We are hoping that having that obstruction out just maybe Gabriel will begin to eat.  Once Gabriel is well after his surgery he will have a upper GI test to see if he is having a problem with reflux.  They would also like to do a gastric emptying test.  They are wondering if Gabriel's insides are not processing his food correctly or in a timely manner. 

In the mean time Gabriel is being signed up for the Kid at Heart program.  Through this program a therapist actually comes to the house to work on feeding therapy.  The waiting list is currently at a year so we need to sign up now so that we can get the assistance ASAP.  If we happen to not need it that is fine but at least we can get on the list.

Gabriel is to start intensive feeding outpatient therapy in Grand Rapids once a week.  Gabe and I are going to have to work out quite the schedule to accomplish this.  If Gabriel does not improve at a reasonable rate he will quickly be placed on Intensive Inpatient feeding therapy.  This means that for three weeks we will basically live at the clinic all day and take every feeding at the clinic with therapist then go home at night. 

In three months we will have another evaluation to see where we are and go from there.

I am not sure if any of this make sense.  I am exhausted, it is hard to get a two year old who hates to eat to try to eat over and over again.  We all got to see Gabriel's temper today.  He just wanted to play with the other kids and not have food shoved down his throat.  

Gabriel, happy today is over, ready for another doctor apt. tomorrow...
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Product of the day - Specs4Us - Frames made specifically for people with Down syndrome and other disabilities.  Click here to check them out! 
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Wednesday, October 27, 2010

31 for 21: Day 27

Well, we went to the ENT today.  We have found an amazing ENT!  He has a daughter with special needs and is a great comfort.  He wants to send Gabriel to another ENT for a consult and surgery but will remain our regular ENT for Gabriel.

I have written before about how Gabriel is hard of hearing in his left ear.  They have not been able to measure how bad his hearing loss is due to Gabriel not sitting still very well for the test.  The old ENT told us not to worry about it and that it shouldn't have any effect on Gabriel's speech.  Several other mommies questioned this tactic as did I but I figured the doctor knew what he was doing.

Gabriel has had two ear infections in his left ear recently.  Gabriel will hold his toys that make noise up to his left ear on a regular basis.  We asked the ENT about all of this.  Gabriel still has fluid in his left ear.  He is thinking that depending on what the pediatric ENT suggests, they may put in a tube while he is under for his tonsil and adenoid removal surgery.

A large worry after tonsil and adenoid removal is dehydration.  With Gabriel this is going to be a major worry.  I am ready to put this surgery behind us.

On a great note, Gabriel is finally sitting still enough to watch AND COPY signing times!!! My little man is signing, so excited!  We should have a signer in our house soon.  Bells will be picking up signs soon and then Gabriel will really take off!  He is something else when it comes to competition with his sister!  Speaking of sister, Isabella showed a huge grin tonight and guess what.  The little stinker has two teeth on the bottom completely through her gums, crazy!  She is working on a top tooth as well.  Can't she slow down and enjoy being a baby?

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Product of the day - signing books by Lora Heller... She uses pictures of babies to show the signs.  Gabriel loves to kiss each and every baby!  The books are hard books so Gabriel can play with them as well, always a bonus!  Even better, each book is only $5!  Click here to check them out.
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Tuesday, October 26, 2010

31 for 21: Day 26

SLEEP, we all need some sleep here at the Purdy house!

Gabriel has a big ENT (Ear, Nose and Throat) appointment tomorrow.  We are meeting a new ENT after the whole fiasco with the last ENT.  Hopefully we will finally be able to schedule his tonsil and adenoid removal surgery.  I can't wait for him to get some sound sleep!

Bells sleeping with her eyes open to make sure her brother isn't going to attack her.
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This is quite the position.  I can honestly tell you there is no way I could sleep like this!  Yes, he has figured out how to do zippers.  The other day Gabe went in to get him out of bed and he was naked dancing around.
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Product of the day - Amazing books about how to work with your child on their communication skills.  There is a book on the early years and one on later years.  click here to see more information.
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Monday, October 25, 2010

31 for 21: Day 25

As many of you know, getting Gabriel to eat is more than a little difficult.  I am very excited that Thursday we will meet with a group of doctors to figure out what our next step needs to be.  This summer I got Gabriel up to eating some baby thirds but we have not progressed any farther.  I may have to say, we have regressed.  I am hoping we can get some answers or at least figure out a path to try.

Isabella on the other hand can't get enough to eat.  She will shovel anything and everything into her mouth.  She seems to always be starving.

Here is tonight's feeding.  Gabriel did not really eat much but he did want to lay with the spoon and try to scoop out his own.  I let him do whatever he wants with food because normally he wont get near it.

"Must Consume Mass Quantities!"
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"Dang, this spoon sure tastes yummy"
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"Dang, I ate a lot"
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"Um, Gabriel, I ate that!"
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"Oh ya, then I am the star scooper"
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"Are you serious Gabriel?"
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 "I call this the double reverse"
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"Who's the king"
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"Mom, he is kind of funny. At least you aren't starving me to play around trying to feed that kid. It is completely annoying!"
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Product of the day - Little Tikes 3 in 1 Smart Trike
This is the only trike that we found that has a seat belt, safety harness and a handle for the adult. Gabriel loves to go for rides. He is just now getting big enough to peddle on his own. We did not want him to miss out riding a bike due to his low muscle tone so we looked very hard until we found a bike he is able to use! Before long he will be going on bike rides with mom and dad!
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Sunday, October 24, 2010

31 for 21: Day 24

Myth - Gabriel is ALWAYS happy.
Just ask teething Gabriel...
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Thank goodness tylonal helps with nap time! Why yes, I do have several of this shirt. It fits our family very well and Boog loves it. I think he would miss Bells after a short while!
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Product of the day - Baby Trend - Sit N Stand Plus Double Stroller
Where would we be with out our Sit N Stand?  It folds up easy to a small size.  It is able to grow with the kids.  I love this stroller!  Check it out here!
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