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":

Tip Junkie

Keeper of the Home

Proverbs 31 Woman

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.

Little Blessings

Well, looks like I missed posting on Monday.  I was so incredibly tired, I could not even muster words!
Today, like most days was a series of ups and downs, but always leaving me at the end most grateful for my boys.

My mom came over and brought me a most beautiful vision-a box of k-cups from BJs!  A decent cup of coffee is a wonderful gift.  Michael went off to school and I spent the day doing a lot of paperwork I needed to catch up on.  Isaiah was most unhappy for pretty much the whole day.  I felt a little tooth pricking out of his gums so I am hoping the Tylenol will soothe him.  My camera is here amongst a flurry of blocks, books and pretty much everything else you can possibly imagine.  I must find it tomorrow so I can snap as many gummy-smile pictures before it is too late!  Also, Isaiah is now upright, with the assistance of the train table for balance and it is the cutest thing ever. 

I found early in the day that we did not have enough formula to make it until the end of the night.  Staring out the window at the rain, I was not looking forward to making the journey with Isaiah to pick some up.  Enter my very good friend to my rescue.  Another life-saving gesture made towards me, now we have enough until the morning without getting wet and most likely annoyed! 

It took Michael approximately 20 minutes after he came home from school to turn nearly anything not bolted down upside down.  He is so curious and very fast!  We escaped disaster as well:  he climbed into the bottom of the sit and stand stroller to play with the straps and was completely stuck.  After calming him down and letting him know mommy would somehow free him (and a few bites on my hand!), I was able to shimmy him out.  I honestly had NO clue if I would be able to accomplish this, but I did. 

Had an encounter with some very rude people in the lobby again.  Apparently, it bothers them that Michael is in a stroller "at his age".  "Oh, mommy must not want to bother walking with him..." one lady commented.

There are lots of things that I did not know when I started this journey with Michael, but one theme that has been running this past week is this:  I had no clue that my every move would be criticized and that I would constantly be defending myself.  From people looking at me down their nose in a disapproving glare, sarcastic comments and then the quick "Oh, just kidding...", to the nosey strangers when we leave our apartment, it is really starting to get to me. 
I never knew how much people would be bothered by us.
I am beginning to feel unwelcome wherever we go. 
Today I was reading a poem about being a parent of a child with Autism,
written by Cindy Waeltermann.  One part struck me very deep and it is exactly what various people are saying, whether it be verbal or through their very obvious body language:

“He needs discipline,” they say “Just a well-needed smack,
You must learn to parent…” And on goes the attack
I tell you.  I am just over it this week.  And it is only Tuesday!  I did have to think about that for a moment, if I was on the correct day of the week!  Just when you think that you are all alone, a stranger can also surprise you.  While waiting for my friend in the lobby, a woman tapped me on the shoulder.  She told me, "here you go.  Put this on tonight and hold your babies".  It was a t-shirt that reads "World's Best Mom".

Immanuel.  Always with us and ready to offer the most simple, yet wonderful reminders of His
love just when we need them most.  His grace is so amazing.

Tomorrow I am going to introduce you to two little angels. Bryce and Baen.  If you read any post in this blog, please read the one coming tomorrow.  Their story will change you forever.
Not a night can be wasted without prayer, so I will post this link for now.
If you have a moment, please check out their Facebook page and pray for them tonight, and could you also remember their parents?  I cannot even begin to imagine what they are going through. 
The closest I can come is remembering the pain and whirlwind of Michael's NICU stay...
and then multiplying that by about 5,000. 

That is the other thing that you are not prepared for when becoming a parent-
just how much room there is in your heart. 

I pray that for tonight, God will surround himself around the Hurst family and give them all some much needed rest.  Lay your healing hands on those beautiful baby boys and comfort the weeping hearts of their mommy and daddy.  May the same power that resurrected our Lord and Savior work a miracle in this family from the hairs on their heads to the toes on their feet.  Amen.