Wednesday, January 25, 2017

Baby Jackson: An Update & Fundraiser

Update as of 2/14 from Amanda's Facebook:  first of all Jackson says he's sorry to everyone he scared yesterday with his episodes & hopes each of you have a very blessed & Happy Valentines Day; he sends his slobbery kisses to all of you!💋💋♥️♥️

Jackson had a rough night/morning but so far since about 5:00am he's been holding steady and resting. He's grumpy but who wouldn't be after the day he had yesterday.
If y'all are still wanting to donate please do so on our PayPal, GoFundMe or mailing.
We appreciate each and every one of you! I can't get through all the comments and messages but please know I've looked and read them! Y'all are amazing.

You may remember this post about babies Charlotte and Jackson from a few weeks ago. If you don't remember it or haven't checked out, please head over here to do so.

Baby Charlotte is doing well! Her recovery is going and she's a happy little thing.

Baby Jackson, on the other hand, is not doing well. He ended up back in the hospital and his genetic testing came back. His testing revealed that he has Type 1 Spinal Muscular Atrophy (SMA).

Type 1 SMA symptoms are usually present at birth or by 6 months.
"When SMA symptoms are present at birth or by the age of 6 months, the disease is called type 1 SMA (also called infantile onset or Werdnig-Hoffmann disease). Babies typically have generalized muscle weakness, a weak cry and breathing distress. They often have difficulty swallowing and sucking, and don't reach the developmental milestone of being able to sit up unassisted. Typically these babies have two copies of the SMN2 gene, one on each chromosome 5. Over half of all new SMA cases are SMA type 1." (mda.org)

SMA type 1 symptoms can be mild to severe. "Children who have noticeable SMA symptoms at or shortly after birth usually are very weak, have difficulty breathing, sucking and swallowing, and never reach the developmental milestone of being able to sit on their own (type 1 SMA or Werdnig-Hoffmann disease). In the past, children with type 1 SMA usually didn't survive more than two years, but today this is not always the case. With technology such as mechanical ventilation and feeding tubes to assist with breathing and nutrition, children with type 1 SMA can survive for a number of years."  (mda.org)

Jackson and his parents have already spent so much time in the hospital and they may have the option to go home soon. Unfortunately, he is still having so much trouble breathing, so when he goes home, he'll go home on his CPAP. His mom recently posted that when they go home, it's likely that Jackson will be on hospice. **Update since this was written...Jackson coded this morning at 9 and was revived, but the drs don't know if he will make it through tonight.**

I know this momma and Jackson from a wonderful mom's group and he was born just a few weeks before Lewis. It breaks my heart to see and hear what they're dealing with right now. Please continue to keep this family in your prayers. And if you feel led to give, there are a few options.

Option 1: PayPal
Jackson's family is accepting donations via PayPal. PayPal does not charge a service fee to Jackson's family to deposit into their bank account. The PayPal email address is jacksoncook0220@gmail.com

Option 2: GoFundMe
Jackson also has a GoFundMe account set up. Here's the link to his page.

Option 3: Fundraiser!
A sweet mom in our group prints shirts and has started a fundraiser for Jackson. I've ordered a onesie for Lewis to wear. They look like this:

front

back

Onesies are $15 and tshirts are $20. You choose the size and the color. Please contact me if you'd like to order one and I'll get you in touch with the momma who makes them.

Again, please be praying for this sweet family.

Thank you!

Happy Wednesday!

Friday, January 20, 2017

Five on Friday

It's Friday! This has been the longest short week of the year... I know, I know. The year has barely begun. Let's join April for Five on Friday.

one | Inauguration

We watched the Inauguration in class today. Some students grumbled, some were happy for the break. But a common theme that we discussed was the fact that even though we might not be happy with the outcome of this most recent election, it's important to not wish failure upon our new president. I was impressed with most students' maturity in response to a new president that they didn't vote for. I hope this is a reflection of who they'll continue to be as adults.

two | supper

A friend posted a photo to her IG story of their supper this week. Sweet potato zoodle pad thai. Uhm. Can you say, "Yum"?? She shared the recipe with me and I'm so excited to try it tonight. We may even add some chicken for a little more protein.

Here's the link from Chelsea's Choices. Check out my snap story if you want to see any updates.

three | Lewis

He's starting to become mobile! I laid him down the other day by his blue cow...and he shimmied his way over and fell asleep on the floor. He cracks me up.






four | family

We spent our long MLK weekend in Iowa with Kyle's sister and her family. It was nice to be away from home and spending time with people we don't see often enough. Lewis had a great time with his aunt, uncle, and cousin. And then the drive home didn't go so well. He slept for 2.5 (ish) hours and then screamed most of the way home. Oi.




five | LLR

Time for some clothes talk. I hosted a LuLaRoe party this last week and it was so fun! It was an online party, so it was even easier to shop because you could browse from your couch in your sweats. My friend, Ashley, is a LLR retailer and she's awesome! She made the party so much fun and she was so personable for my friends to shop with. Go check her out on Facebook. Her weekly parties are on Wednesdays!

And if you host a party, you have the chance to win some free clothes!

Go check out other Five on Friday posts and have a great weekend!







http://www.smidgeofthis.com/

Thursday, January 19, 2017

Prayers Needed!

You may recall this post from two weeks ago. Charlotte is doing well and recovering at home with her parents. She's a sweet little girl who is so happy!

Unfortunately, baby Jackson has ended up back in the hospital. His GoFundMe link is active and there are updates as to how he's doing.

Please, please be praying for him. This sweet little boy is not doing well.

Happy Thursday!

Monday, January 9, 2017

Five Months: Lewis

This is a week late, but with baby Charlotte's surgery being today, I didn't want another post on here before her get better day. Updates will be posted to the original post about Charlotte. So keep checking there.

Lewis turned 5 months last Monday. We were still on Christmas break and loving it.






He didn't have an appointment this month, so I'm not sure what his stats are. But he has been growing like crazy. He's still a peanut, but he's tall.

Lewis loves to visit and he loves people. (I'm not entirely sure where he got that from...) And he's interested in learning about everything going on around him.

In the last month, Lewis has had two snow days (the third being after his 5 mo marker), celebrated a whole week of Christmas, went to his first wedding, celebrated his first New Years, learned to nap by himself (YES!), and has gotten sick again. Stinking colds.









Three new things he's started this month are: making a really loud "mmmmmmmm" sound whenever he's unhappy...hungry, tired of being with a certain toy, tired of tummy time, etc....resting his arm over whatever he's leaning against, and folding his hands when he's pleased with himself.






We love you, Lewis. And we are so glad you're here!


Thursday, January 5, 2017

Welcome back! Some good and some not so good.

Update on Jackson from Amanda's FB as of 2/14: Update as of 2/14 from Amanda's Facebook:  first of all Jackson says he's sorry to everyone he scared yesterday with his episodes & hopes each of you have a very blessed & Happy Valentines Day; he sends his slobbery kisses to all of you!💋💋♥️♥️
Jackson had a rough night/morning but so far since about 5:00am he's been holding steady and resting. He's grumpy but who wouldn't be after the day he had yesterday.
If y'all are still wanting to donate please do so on our PayPal, GoFundMe or mailing.
We appreciate each and every one of you! I can't get through all the comments and messages but please know I've looked and read them! Y'all are amazing.



Update on Charlotte: She had surgery yesterday (Jan. 9, 2017) and everything went well! They were able to operate under her arm instead of opening her chest. The surgery was shorter than anticipated and her mom and dad were able to see her yesterday. Thank you for your prayers!

Update on Jackson: He is having a feeding tube placed today (Jan. 10, 2017) and will continue therapy for his strength. 

Check back later for more updates!

It's 2017 and we're off to a bang in the Entzel house. Lewis got sick over break and I came down with a fever of 102 on Monday. We were fortunate enough to get a(nother!) snow day on Tuesday. And Lewis and I were still sick on Wednesday...so snuggles and extra sleep were needed.

All three of us are back to the grind of work and daycare and there are so many happy and sad things happening right now.

On a happy note, my cousin, Paula, got married Dec 30. The ceremony was short and sweet and they were married by the end of it. So it was totally a success. Lewis wowed the guests with his "perfect bald head", and "how cute he is". So a smashing success all around.






Lewis turned FIVE months on Monday. *Lest you think I forgot, I'll be having a five month post here in short order.* He's a ham and we love him so.


I mean, c'mon. Look at that pose. *heart eyes* And apparently that arm drape pose is his new thing...because this next photo was from Tuesday when we both felt crummy.






And on to some more somber news. I'm in a mom's facebook group of moms who were all due in July. (A good handful of us never actually gave birth in July, but it's the thought that counts, right?)

There are two little babes from this group who need some prayers and support. Sweet baby Charlotte has a heart condition that needs to be corrected. She's going in for heart surgery on Monday. If you would wear purple and pray for her that day, her family would appreciate it. Charlotte's family chose purple as her color because:

"Since her diagnosis, we've been praying that God would heal Charlotte's heart, either by miracle or by surgery. However, what's more important than God healing her physical heart is that some day He transform her heart from a heart of stone to a heart of flesh, thus making her a daughter of the King. This has been a prayer for our little girl since before she was born. We all know that any daughter of any king is called a princess. So, we chose purple because it is known as the color of royalty, and we want more than anything for our Charley Bug to someday be a daughter of THE King."

Excuse me while my goosebumps subside and I cry a little. My heart goes out to this beautiful family and let's lift them up in prayer before, during, and after Charlotte's surgery on Monday.

The second little babe is Jackson. He's had many hurdles to overcome since his birth over 5 months ago. He's a trooper and he's sick again. His momma is not able to work as she's with him at the hospital for all of his tests and it's going to be even more of a strain on their family. I've included a link to their GoFundMe account. If you feel like you'd be willing to support this little family, they'd appreciate it greatly. If you're unable to contribute financially, please pray for them as well. He's a trooper and really so sweet.

GoFundMe Link

And last but not least, there's a sweet lady I have been following on IG for quite some time now. She's so genuine and lovely. They're a God fearing family and it radiates from them. A few days ago, I saw that her most recent post was that her husband was in the hospital with bilateral pneumonia (basically, double pneumonia). He was on a ventilator and struggling. And a day or so ago, she posted that her husband and best friend went home to be with his Savior. This sweet family has four children who love their father dearly. He will be greatly missed and my heart aches for them. Please, please pray for them as well. Ruthanne's IG handle is @ruthannegenco. Go read her posts and her blog. Please pray for her and their children and one day, go support her and their children through her etsy store.


I'm sorry that today's post is so heavy. I tried to start off on a lighter note, but the sad and hard things have just appeared recently. Join me in celebrating the good start to 2017 and also join me in praying for those who are having a rough start.

Happy Thursday and I hope to be more up beat the next go around.



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