Thursday, December 1, 2011

December is here...

I am so happy Friday is almost here!  So dang tired! Bedtime for Michael went pretty smoothly, I think he found it funny that he had two baths today.  He had pudding for a snack today, which I made with coconut milk because he does not consume dairy.  We are working on using a spoon, and pudding seems to motivate him the most for this task right now.  So after he takes x amount of bites with a spoon, he is allowed to play.  Think he had fun?  :)

As you can see from the background, it has been an interesting day.  Anything that was not bolted down got thrown, tossed, banged...you name it!  But for the most part, he was pretty happy! 
Isaiah was not so happy tonight.  He is still fighting these nasty cold germs but I really needed him to get used to sleeping in his crib.  He is almost too big for his swing, and we are running short on time!  I am too afraid to take a picture of him sleeping, though because I do not want to wake him up.  He does look so sweet! 

December is here and I really need to get moving on making Christmas gifts!  Am I the only one who feels like time is just flying by?  I feel like I am still getting used to writing "2011"!  There are some wonderful blogs out there to give you inspiration on hand made gifts.  Right now, here are my "favorites":


And here is something that I think would be great for any busy mamma's wall:


Isn't is precious?  It is by Thirty-One Gifts  and comes in three different colors, but pink is always best, don't you think?  This is what the description says:
The ultimate way to organize your home. Easy to hang on a wall, on a door or on shelving. A great way to organize a calendar, note cards, homework and more. Lots of compartments for papers. Measures approx: 42”H x 22.5”W

I do happen to know how you can snag this pretty baby--head over to www.mythirtyone.com/cactis and Christina will set you right up!
(Blogger seems to be having problems with hyperlinks, my apologies.  Just cut and paste the above address into your browser and you will be able to get to Christina!)
OK, so the other day I asked for your prayers on behalf of Bryce and Baen Hurst.  They are just the sweetest little babies you will ever see, and most likely, the most courageous and strong.  Here is a quick explanation of what they have endured thus far:

Bryce Andon and Baen Allen were born to Brian & Casey Hurst on March 3, 2011, at 8:07 am and 8:08 am respectively. Other than large hernias they were healthy. When they came home, they began to experience loud, labored breathing but the doctors assured Brian and Casey that the twins were fine. At 2 weeks old, they both had surgery to correct their hernias all the while being told that Bryce and... Baens breathing will improve, which it didn’t. In addition to their loud, labored breathing, they would also regurgitate majority of each bottle. They both were anesthetized for the second time at 2 months old for a bronchoscopy and a swallow test. That procedure found they suffered from Trachemalacia, Layngomalacia, Collapsible pallet, Enlarged adenoids and Gastroesophageal reflux disease (which when combined with everything else is very dangerous).
Their problems continued to escalate and they were referred to a geneticist who not only confirmed they were identical, but also that they suffered from the rare genetic enzyme storage disorder called Hurler Syndrome. Each of Bryce and Baen’s health problems (including the hernia) are symptoms of Hurler Syndrome however the doctor informed their parents that more severe problems will occur. A cardiac test and an eye exam determined that Bryce and Baen had: a dilated ventricle, an enlarged ventricle, a dilated chamber and corneal dystrophy.
There is no cure for Hurlers and the prognosis is TERRIBLE. Without treatment the life expectancy is 5-10 years, and the mental age does not exceed 4 years old. A regular bone marrow transplant could extend that by a few years. But thankfully Monday (November 7, 2011), Brian and Casey were put in touch with the University of Minnesota Children’s Hospital. They not only specialize in Hurler Syndrome, but they are the ONLY place in the world that performs a specific type of bone marrow transplant which focuses on the affected part of the brain!  
The above information was taken from the Facebook page members of their family have created to bring awareness to the Hurst boys' condition and help raise money for the parents and children.
Brian and Casey have made the decision to move their family to Minnesota, where the boys will be receiving their medical care. 

I really cannot even begin to imagine this situation.  Any of it.  My heart just breaks for this family.  There is a benefit being planned to help them with expenses and all that information can be found here

Hug your babies tonight.  Please do not forget the Hurst family in your prayers, and please consider donating to their fund if you are able.

4 comments:

  1. Thanks for thinking of me!!! It really is a great item. I have one in my "office"

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  2. :) My pleasure! Can the organizer be personalized as well?

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  3. Sadly, at this time that item cannot be personalized. Did you see my comment about the link not working? It would be perfect if it took you to www.mythirtyone.com/cactis

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  4. No, I did not see that comment, I am sorry! I will fix it right now!

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