Monday, August 10, 2015

Shane Update

It has been awhile since I have given an update on Shane.  I kept thinking that when there was a lull in doctor appointments that I would give an update.  But truthfully, there will never be a lull in doctor appointments.  Since it has been awhile, I apologize if this update is long.

So about 5 weeks ago, Shane had another sedated MRI.  His neurosurgeon had ordered the MRI since Shane was still significantly delayed.  As you may remember, Shane has been diagnosed with Chiari (Arnold–Chiari malformation type 1) and Hydrocephalus.  His concern was that maybe one of these conditions had worsened and was contributing to him being delayed.  While he was sedated, they pulled some blood to check for certain genetic disorders.  (more info on Chiari here)

His MRI looked good and no changes were seen from his previous MRIs. So once again, no surgery for Shane!  He still has a mild case of Hydrocephalus and he will have CHiari for life.  There is no cure for Chiari so it is something that will continue to be monitored.

Shane has been having sleeping issues for the past couple of months.  Some nights it is very hard to get him to sleep and most nights he wakes up during the middle of the night.When he wakes up in the middle of the night, he is not upset and does not need anything.  He just wakes up and is wide awake.  We only know he is awake because we can hear him talking and playing in his room.  He is currently on melatonin but even that sometimes does not help.  Sometimes I just have lay with him until he falls back asleep.  As you can imagine it is very frustrating to come from work at midnight and see him standing in the window waving at me.  Momma needs sleep!  Since insomnia and sleep apnea are very common with Chiari, Shane had another sleep study done about 1 week ago.  You may remember that he had one done about 2 years ago and that one was normal.  I have to say that this sleep study went better than last time but there was still very little sleep.  He didn't go to sleep till about 9:30pm and woke up around 2am which is his usually time to wake in the middle of the night.  I gave him a dose of melatonin and went back to sleep.  At 6am they wake you and send you on your way.  Those results take about 6 weeks so when we see the pulmonologist in about 5 weeks we will get those results.

Friday I got a call from the genetic consular about Shane's genetic blood work.  Shane has Gorlin Syndrome.  What is that you ask?  Well, go google it cause that is what I did.  I'll wait .............................................................................................................................Did you look it up?  Well, now you know as much as I do.  So here is what I know from my research of different sites and from talking about it with people on the Gorlin support group.  Gorlin syndrome is also known as Nevoid Basal Cell Carcinoma Syndrome or NBCCS.  It is a genetic condition which means he probably got it from one of us though it is possible to have a spontaneous mutation.  90% of people who have this condition have basal cell cancers and jaw cysts.  there is a 5% chance of children with this condition to develop a type of brain cancer called medulloblastoma.  So what does this all mean for Shane?????  Well, we are meeting with the genetic consular later this month to talk about that.  We will need to be very proactive with protecting his skin so he needs sunscreen when he goes outside.  He will need yearly dental x-rays done to check for jaw cysts starting at the age of 8 and yearly exams to check for basal cell skin cancer.  Since this is a genetic condition he has up to a 50% chance of having children with this condition.  This condition is considered rare, about 1 in 40,000 people have NBCCS.    As you can imagine, getting this news was hard.

But there is a bright side to this.  We know what he has and what to keep an eye on for the future.  We are better prepared!God has a special plan for him.  Everyone who is near him just adores him.  Wherever we go, people are drawn to him.  They come up to him at the grocery store.  His smile is contagious!  I took him to my women's group with me and the women fell in love with him.  Its amazing to watch how people respond to him.  I know that no matter what, God is with us and He has a special plan for Shane.  Even with all these issues and doctor appointments, I am honored to be his mom.  I am honored that God chose me to be Shane's mom.  This diagnosis was not what we had wanted to hear but we will continue to fight and learn.  Each day is a new day and we will never give up.  God has been faithful to us and He will continue to be faithful.  With God by our side and your support, there is nothing that cant be accomplished!  I just want to thank you all for your support and prayers.  It means the world to me.  As I learn more, I will share as well.  This condition is new to us and foreign.  I have more questions than answers, But I know we can get through this.  With God anything is possible!

Thanks again!

P.S.  I wrote this at 1am so I apologize for any grammar mistakes.  I wrote this after I got home from work.  Its the only time I have quiet time to myself :)

Trust in the LORD with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths. Prov. 3:5&6

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.  Jeremiah 29:11

Friday, January 10, 2014

How I Earn $25-$50 in Amazon Gift Cards from Swagbucks Every Month

I am happy to say that I was able to pay for most of my three children’s Christmas presents this year by using Swagbucks.  
The good news is Swagbucks doesn’t make you start at zero. The site automatically gives you 30 Swagbucks just for creating an account. Once you’ve set up your account, you can start earning more Swagbucks in a variety of ways
I usually spend about an hour each morning while I eat my breakfast and drink coffee to work on Swagbucks while I do others things (like e-mail, Facebook) and I now earn about about $25-$50 in Amazon giftcards per month. Here’s how:
1. Using the Facebook page: People post whether they are on “dubs” or “trips”, which means that they have gotten 2 or 3 search wins. If I know that other people have gotten 2 wins, then I continue to search after my first win until I do, too. (If everyone is only on singles, then I don’t waste my time searching more.) 15-30 points per day
2. Swagbucks TV mobile: I start SBTV mobile every morning on myKindle and only have to monitor it to make sure it hasn’t frozen on any commercial. 50 points per day
3. Radium One Offers: The Swagbucks Facebook page usually has people that comment about which offers are crediting and don’t require spending any money. I use this info to quickly find the offers, sign up, and get points. They also usually have offers for printing coupons or watching videos. 10-20 points per day
4. Encrave: Right now, after getting a search win or doing the NOSO, you can click on a page with lots and lots of offers that simply require you to click on links to get points. 30-50 points per day
5. Jun videos: These all earn 2 points and can usually be found on the homepage or ledger. They are not always there, but when they are, can net between 10-50 points.
6. Surveys: I don’t spend much time on these, but if I see a survey that takes less than 10 minutes, I do it. I usually get about one per week. 50 points per week
7. Making my goal: By doing all the above steps, I make my points goal every day. This gives me a bonus of about 500 points every month!
8. Search: Rather than using your regular search engine, log into Swagbucks and enter your search in the search bar. As you perform online searches you’ll occasionally be rewarded Swagbucks in varying amounts. 
If you do win Swagbucks during a particular search, a small screen will appear telling you how many you’ve won. You’ll have to enter a security/captcha code to confirm you’re a human and not a robot, then the Swagbucks get added to your account.
9. Search on FridayFriday is known as Mega Swagbucks day to Swaggernauts (aka Swagbucks users). All day, every Friday you have a better chance to win higher denominations of Swagbucks for your searches. For instance, where you may normally only win 8 Swagbucks in a typical search on Friday you could earn 30.
10. Daily PollEarn 1 Swagbuck for every day you answer a simple daily poll. You can access the poll through the toolbar or the Swagbucks home page. Think of it this way – one daily poll multiplied by 30 days in a month equals 30 Swagbucks. Do know, however, that you will only earn a Swagbuck for the current day’s poll, not previous polls.
11. ShopEarn Swagbucks the next time you shop online. Much like you can earn cash back when you shop through sites like Ebates and Cashbaq and Shop at Home, you can earn points when you shop most major online retailers through Swagbucks portal. Instead of earning cash back, like you do on many other sites, you earn a certain number of Swagbucks for every dollar you spend online.

 I love that I have been able to get my three kids presents for their birthdays without having to go into our savings or use the credit card.  The Swagbuck store offers many prizes to choose from including gift cards to popular retailers such as Starbucks, Amazon and Barnes & Noble. Once you’ve earned the number of Swagbucks needed for the prize of your choice, you can redeem them.  My favorite rewards are Amazon gift cards.
Your turn: How have you earned the most Swagbucks? What tips do you have for newbie Swaggernauts?

Click here to check it out:
You wont be disappointed 

Friday, November 22, 2013

Fair Trade Certified™ coffee from Green Mountain Coffee

Who is Green Mounting Coffee?

Green Mountain Coffee Roasters, Inc. (GMCR) is focused on creating positive and sustainable change for people and ecosystems in the places where they do business through focused sustainability endeavors. They are committed to social and environmental responsibility and continue to evolve their company’s corporate citizenship and community outreach efforts. They’ve operated under the core belief that their strength as a business, their support for their employees, and their commitment to their local and global communities are inseparable; each supports the others in a powerful synergy that drives their success.

I'm a BzzAgent, and I received a product sample to review Green Mountain Fair Trade Coffee.

I received my Green Mountain Fair Trade Certified Coffee.  We brewed up a bunch, and man, it is rich and flavorful.  We love it here, and also, being activist types, we were really excited that this coffee actually is certified Free Trade, so everyone involved in this product received a fair wage for a great cup of coffee!  Love it, and loved to be a part of making sure others get decent pay for the great morning they provided me with.

Wednesday, October 30, 2013

Curél® Intensive Healing Cream for extra dry or sensitive skin.

With all this cold weather my hands & skin tends to be dry , irritated & sensitive to any scented cream or lotion.

I have tried many lotions but most of them have failed to cure the dryness & sensitivity that I had.

BzzAgent gave me the chance to try Curél® Intensive Healing Cream in exchange for my review & honest opinion

I have been using the product for awhile and I really like it’s thick ,rich & creamy formula .
It is not greasy at all ,doesn’t take any effort in rubbing it over the skin,& is absorbed quickly.
I have been using it on my hands & ashy dry heels , now i find my skin looks & feels softer & smoother.

The product is fragrance free & hypoallergenic , long lasting , provides immediate hydration & heeling relief.
If you suffer from dry sensitive skin , i recommend trying Curél® Intensive Healing Cream.

Disclosure:  i got the product free from BzzAgent  for testing purposes

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Vanilla Flavored orange Halloween TruMoo–Enter now to win!

As a BzzAgent, I received coupons in the mail for the new vanilla and chocolate Halloween Edition of TruMoo. From now through October 31, any time you purchase a half gallon or larger of specially marked Halloween Edition TruMoo®, you’ll find a code on your cap sticker — enter it over on the TruMoo® TruMoo® Facebook page for a chance to win a FREE Goosebumps Haunted Hollywood Vacation:
  • It’s a trip the whole family will enjoy: an all-expenses-paid vacation to Los Angeles, CA with private tours full of haunted Hollywood magic!
  • The grand prize includes a terrifying behind-the-scenes tour of Fox Studios and a visit to Old Town Pasadena for a frightening special effects experience
You can enter as many codes as you want, and when you do, you’ll automatically receive a printable coupon for $2 off any Goosebumps DVD of your choice. Don’t be shy about sharing the links above and encouraging other parents to enter the contest, too!" alt=""/>

Wednesday, June 5, 2013

MRI and Sleep Study Update

We have so much to be thankful for! Shane had his repeat MRI done a couple of weeks ago. I was so happy that he didn't have to be sedated for it.  They did a "quick scan" which means that they just took 2 pictures of his brain and each picture took about 2 minutes.  He was back in my arms before I could remember how to access the Internet off the tv!  While I was waiting, I overheard some of the doctors doing their rounds and once again I was reminded that there are others who have it much worse and that I have much to be thankful for.

Our appointment with the neurologist was the same day so we didn't have to wait that long for the result.  While waiting in the room, the nurse came in and told us that the doctor was in the NICU so our appointment would be delayed. Another reminder that we are so incredibly blessed!  I think I stopped breathing when the doctor came into the room.  I didn't want to miss anything he had to say.  He told us that the MRI looked exactly the same as it had before, which is good and bad news.  He still has hydrocephalus but it is not bad enough to treat at this time. No surgery is needed!  He was very happy to hear that Shane was not having any issues eating  and that even though he is still behind physically, he is improving.  Because hydrocephalus can injure the brain, thought and behavior may be adversely affected.  So even though I am thrilled that he does not require surgery right now, I know that this is going to be a life long issue that we will have to keep an eye on.  We go back for a check up in 3 months and possibly another MRI in 6 months. 

Last Friday, Shane had his sleep study done.  A sleep study measures quantity, quality, and breathing during sleep.  Calling it a sleep study is very misleading since there was very little sleep involved.  You have to arrive by 7:30pm and he usually goes to bed around 7pm.  Strike 1.  By the time we got ready him with all the wires, fed and changed it was almost 8:30pm. Strike 2.  Sensors and belts were attached to his head, nose, mouth, chest, abdomen, fingers and legs.  So pretty much, they were everywhere!  The worst part was the nasal cannula.  He did not like having it in his nose and every time he moved, it had to be repositioned which was about every 30-60 minutes.  Then is would a little bit to get him to settle down and go back to sleep.  It was exhausting!  The study was over at 6am and it is something I hope to never do again.  It will take about 3-4 weeks to get the results.

We have been through a lot this year and I am eternally grateful for all your prayers.  Every night as I put him down for bed, I kiss his head and thank God for His faithfulness and mercy.  I am so blessed to be this little boy's mommy.  

I can do all things through Christ which strengtheneth me.

Philippians 4:13

Monday, May 20, 2013

11 Months

I can't believe that the twins are 11 months already.  Boy does time fly by!  Joy is crawling everywhere and loves to get into everything.  She is standing and sometimes stands all by herself.  I have no doubt that she will be walking soon.  Joy is a perfect name for her, always smiling and laughing.

Shane is doing great with his physical therapy and is getting stronger every week.  He is rolling over but still hates tummy time.  He can sit by himself for a minute or so before falling over.  I am so proud of his progress.

Last month Shane saw the ENT doctor because of his increased breathing noise.  They took some xrays and found that he had a marked narrowing of his trachea.  The narrowing looked floppy so they believe that he will outgrow it but if he needs to be sedated again we need to let the doctors know so they can use a smaller tube.

When Shane had his MRI done a few months ago, they also found that he has a Chiari malformation of the brain which means which parts of his brain protrudes through the opening in the base of the skull into the spinal column. is a good site to learn more

Some signs of Chiari malformation in babies include:

  • irritability when being fed
  • excessive drooling
  • weak cry
  • trouble gaining weight
  • arm weakness
  • developmental delays
  • sleep apnea 
Now since we already know he has a narrow trachea and that he is at risk for having sleep apnea, we are doing a sleep study later this month. At his 10 month check up we found that his head had grown a lot, going from the 65th percentile to the 95th percentile.  Because of this, he is having a repeat MRI done tomorrow to see if he needs a shunt so please keep us in your prayers.  Luckily he is not being sedated for this MRI.  They are doing a "quick scan" so it should only take about 10-15 minutes to do.  The other good thing is that we have an appt with the neurosurgeon later that morning so we know right away what they found in the MRI.  no waiting.  I just want to thank you all for your prayers as we continue on this journey.  It has been a long road and  we continue to see  God's faithfulness in every step!