Christian ... An Amzing Cleft Lip & Palate Story

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A friend of mine posted this video on my facebook early this morning......

I watched ... and cried....  I *know* that feeling.......   I soooooooooo KNOW that feeling....

I saw another video posted by her... Lacey, Christian's proud Mommy ....


I looked at this and I thought ... WHAT AN AMAZING FAMILY!!   And I related.   So I found Christian's Fan Facebook page, and I *Liked* it..  and I sent her a message. 

I told her a little about my family - about Noah and Nathan - and told her I felt the need to reach out to her.  She's not alone.  There is a whole community of *US* out there ..... sometimes, we're just hard to find.

Christian is amazing ....... he was given the perfect family to love him and help him thrive.  PLEASE SHARE Christian's Story!!!   You can read his blog here at LEADING THE BLIND.

Avery's Bucket List

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 My Mom posted a video on her facebook on April 30th 2012.......

......... I didn't see it for several days .... but when I did, the story inspired me.



 This news special was posted at 10am on April 30th.....

I found their blog .... Avery's Bucket List .... I thought - I am going to SHARE this on my blog - more awareness for this child...

And today - as I'm really looking at the blog....... I see ....... she died the same day her story broke. (This is taken from her blog, posted May 1st, 2012)

 Avery Lynn Canahuati 11/11/11 - 04/30/12 
 Hello everyone this is Avery's father. Avery passed away yesterday sometime around 3pm due to pulmonary complications related to SMA. In short, one of her lungs collapsed and she went into cardiac arrest. I immediately performed CPR on her and was able to bring her back to life, but only for a brief period of time before she passed away shortly after arriving at the hospital. Avery's passing this quickly came as a complete shock to all of us, as she had just been given a thumbs up at her last doctors appointment only three days ago. While we were aware of the severity of her diagnosis, we never lost hope for Avery and even in her passing, we still have hope for our daughter and all of her friends. I'm going to share a note Avery gave me back when all of this started, but made me promise not to open until I knew the time was right... (read more by clicking the above link)

A Video to Honor Her....

 Avery Canahuati, the 5-month-old girl who captured the nation's heart with her family's embrace of life despite a devastating diagnosis, died Monday of complications from spinal muscular atrophy (SMA). The disease is the number one genetic killer of children under age 2 in the U.S., with 1 in 40 Americans carrying the gene that can lead to the disease.

Please keep her family in your prayers.  Share her story!

Lost Words....

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What can you possibly POSSIBLY say to express how you feel when you find out that while you were stuck in your own little world, involved in a move, in everything going on in your family, that a fellow blogger family, one you've been reading about, following, inspired by .... has lost his battle and gained complete freedom from everything that weighted him down ...  and when you find out it happened months ago, it's crushing.  Usually I'm keeping semi up to date... especially with the kids who are pure inspirations...  but not the last few months.

PLEASE read Benjamin's story, go along on his journey, laugh with him, and smile with with ... celebrate the awesomeness that he is.  Because he always will be!

He was born just a couple months after my Noah.

I Did Not Die
Mary E Faye

Do not stand at my grave and forever weep.
I am not there; I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn’s rain.
When you awaken in the morning’s hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and forever cry.
I am not there. I did not die.

 Please visit Benjamin's Blog:  Read his inspiring life.   I admit that I completely swiped this entire blog post because I found it very inspiring.  It is located here: Parents

"Parents who have surrendered the sweetest and smallest flowers from the family's garden need to remember our Heavenly Father. He has promised a special reward to those who now suffer in silence, who spend long days and longer nights through their trying times of bereavement. Our Creator has promised glory. He said, "For after much tribulation come the blessings. Wherefore the day cometh that ye shall be crowned with much glory; the hour is not yet, but nigh at hand." (D&C 58:4) That promised glory includes the blessing of reunion with each child who has left the family circle to help surviving members of the family to draw nearer to God. Those children still live and are an heritage to the Lord." Russell M. Nelson

Featured in Kidz! Plus RSS discussion

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First of all, Noah and Nathan were both featured in the KIDZ blog!  Noah was last month, and Nathan was just a few days ago!  (Click their linked names to see the entries)  Noah's was copied from the DOC16 Site, and Nathan's was the Pity entry I did a few weeks ago.  It's amazing, to me, when their stories are shared.  I feel that these two boys, and so many others, show so much hope and strength.  Life isn't always what it's pictured to be, or even how we always want it.  Things don't come to us in timely fashion a lot, and we have to work at it... but, just because sometimes things are thrown at you, without understanding why, doesn't mean they are any less special!

Upon Nathan being featured in the KIDZ blog, there was a note left.  She had said, in it, that before she even read the whole story, she thought that Nathan looked like an RSS kid.  See, she is an RSS adult.  So it struck a cord with me.  What AM I waiting for?  I have been dancing around joining RSS sites because we didn't have the definite diagnosis.  So I just hadn't.  Now, I realized, I needed to.  So I joined the yahoo group she suggested, and I joined one on Facebook long ago, however I had never posted in it before, so I did now.  I even managed to find a growth chart (length) with an RSS curve on it off the Magic Foundation website, so after having Dennis print off Nathan's growth chart (accessible by our clinic website) ... I sat there and was putting his heights in .... and it amazes me how close to "average" he is for RSS!  He almost follows the curve ... 

We were considering going to the Little People of America's Convention this year, it's in Nashville, but then I read about the Magic Foundation Convention.  They have it every year in Illinois.  And I think this is something we need to go to because one of the specific disorders that they deal with is RSS.  So we hope to go to the Children's Convention.  We went to one with Noah when he was 2 and I have to say it was something that we'll never forget!  It was a wonderful learning experience for us, and an opportunity for us to network with other parents going through the same thing, not to mention - meeting up with other DOC16 families. Anyway, I have noticed that Nathan is starting to notice the growing size difference between him and his little brother (who is now bigger then him) ...  and I think it's bothering him.  So I think this would be a wonderful importunity for not only Nathan, but our whole family!

Goodbye Sweet Kayleigh...

I am going to work on catching up on Nathan's Daily today, but not right now. I'm sure you all expect this to be about him, but it's not. I have so much to get done today...

But I can't right now, all I can do is hold Nathan and cry, thankful for what I am holding. I will be sure to give Noah many extra special hugs today.

I got on this morning, and I was talking to a friend of mine, she said "I'm so sad right now, my friend follows this woman's blog and this little baby died today - IUGR, Preeclampsia" and I went "OMG NOT KAYLEIGH" .. and I switched over to my blog, clicked on their link... and sure enough... the most recent post...

5/11/09 - Goodbye Sweetheart , for now ...

Everything else seems so trivial right now. They lost their little girl. I can't believe it. It hurts my heart in so many ways, because I understand, I've been there - my outcome was different, I got to bring not one but two NICU babies home. Our outcome could have been so much different though. Why couldn't they take her home? She was in the hospital for almost a year and wasn't home once. They were just talking about how they might be going home soon, as soon as she got off this medication, and that dream was shattered. I'm sure they feel peace somewhere under the utter heart breaking grief. They never lost hope, they never gave up.

Please say an extra prayer, positive thoughts/energy their way today, and for the rest of this week. Their journey isn't over with her yet. They still have to say that final goodbye. That .. is going to be the roughest.

This is the note I left their family this morning... (photo copied from their blog)

Aimee, Adam, Allyson & Brandon - my heart aches for all of you this morning as I read the news with tears streaming down my face. I just wanted to say that Kayleigh will never be gone, she will live on forever in a lot of people all over the world. She was and will continue to be an inspiration, and her spirit felt by many. There is nothing I can say to truly comfort in this time. We will all hug our children and think of you all, and of Kayleigh, we'll say special prayers, and our hearts will all be reaching out for you. The journey isn't over. There is an extra special angel in heaven today.

I am still crying... I can relate so much that it breaks my heart. She had been in the hospital for almost a year, born June 23rd. She would have been a year old next month.

Remember - her family is to be featured tomorrow on THE DOCTORS .... I'm sure they will pay a tribute to her, now.

I texted Dennis and told him, we've both been following the story. He even said he'd probably cry tomorrow watching the show, and that was before. Now... it's not even a probably. I couldn't call him, I didn't want him to misunderstand me, and I haven't stopped shedding tears. Again, I can relate - SO MUCH.

I will be sure to hug/hold Noah & Nathan extra hard today ... thankful for what I can touch, smell, love and watch grow.

This isn't about me, it's about Aimee and Adam, their family, Kayleigh. PLEASE go visit their blog (click on Kayleigh's button) .. please share in Kayleigh's inspiration. Be sure to have tissues.

There is an extra special angel in heaven...

20 Days of NDD & Woe is Mommy...

Wow … 20 entries already. Just seems like yesterday we started this upon his Neurologists suggestion. Well she didn’t say Hey, go to blogspot.com and create a daily diary for Nathan ......Nah… it’s just my choice of places to store and share it. If I am going to make the effort, I might as well let those who follow the kids (family, friends, readers) read it also.

I appreciate all those of you who follow and take time to read about Nathan’s journey, even if many of the days it’s repetitive. He has his schedule and he likes things a certain way – if you deviate from it without it being HIS idea, all hell breaks loose as the tears start rolling and the body starts throwing itself around and these wails of attitude come forth out of his precious mouth. It’s a scary sight – one I prefer not to witness. So yeah, he gets his way to a degree.

Someone commented on how tiny Nathan looks compared to his Dad. Well that’s easy, cuz he is. He is 2 years old and he is only 16lbs. Now I got very excited the other day because he had gained 5 oz in a couple weeks. I am excited to find out how much he has gained since then, and I hope it’s substantial! I hope. I’m going to call his nurse on Monday morning… and ask her to come and weigh him. Yay! Then I will update, and I will ask her to bring me a copy of her weights in (same scale and not different ones like on his DR growth chart) and share his growth with you all, but this is what his last growth chart from the DR looked like… (from his 2 yr check up) … you can see that he is below the 3% line, far below, because technically, he’s not even ON a percent, he’s not even on the growth chart… but he was following his own growth curve, until recently when even THAT started to drop off .. you can see how his growth curve has gotten farther from the 3% growth curve. That is why he was recently “officially” diagnosed with Failure to Thrive.

In the past there was discussion – at least touching on the option – of placing a G-tube. I have been very anti G-tube. Nathan came home on an NG-Tube .. we had to learn to place it, to replace it, to clean it, to feed with it – etc. However, I noticed it made him a very lazy eater. He didn’t try. Sure he had a cleft palate, sure it was harder for him to eat, but I knew he could do it. I wanted him off the NG-Tube, I could see he hated it as much as I did, and not only would he pull it out every chance he got, but he would scream every time we had to replace it. It’s not an easy thing to HAVE to cause your child pain or discomfort, regardless of if it’s for their best. Anyway – watching him become lazy eating, knowing that he COULD do it… I asked his Ped if I could take the tube out and just nipple feed him, yeah I realized he MIGHT lose some weight, but in the long run he would be eating on his own and be able to eat food when the time came. IF he was going to be a successful eater … I knew he had to get off that NG tube. His Ped strongly suggested that we don’t do it, but after a couple of weeks seeing him digress more with his nipple feedings, I changed him NG tube one morning, and he pulled it out, I put it back, and put him in his swing, then went to feed him and suddenly milk was all over – here he pulled out the NG tube without MOVING the tape .. WTHeck child you are getting TOO talented at this! That was it… I couldn’t put him through the replacing it again. So I put the milk in a bottle, and fed him. He didn’t eat well, but he ate. The 2nd bottle he did okay again. The next bottle, he did fine, cuz he worked up a hunger. By the following day, he was doing really good, and by the end of the week, he was eating like a champ! And officially OFF the NG Tube! Whoohoooo …

So I have problems wrapping my mind around the fact that IF we were to go the NG Tube route, he wouldn’t get lazy again. So I asked them to wait, to give him a chance.

Now he’s officially Failure to Thrive … did I do the right thing? I don’t know. I feel like I did, in the long run. BUT… there is that wonder and worry there.

G-tube isn’t under discussion right now, but if he doesn’t start to digest protein the way he is suppose to (or eating more of it) … I have a feeling that it’ll come back on the table.

This time, I won’t fight it…

He isn’t eating again today. He has a migraine again, but it’s not as bad as usual I don’t think. I know the migraine prevention medication is helping, I have NO DOUBT about that. It’s not going to curb everything.

I have moments where I really wish he could talk. He’s 2 years old and we’ve been playing this “guessing game” for years now and it’s not easy. Sure he can point… he can sign a few things, say (and when I say SAY I mean hum) … a few words. But he can’t tell us what hurts. It’s hard to watch him suffer. We are working on ALL of us learning ASL (American Sign Language) and it's not easy., but we're doing it. We are changing his sign for "all done" (which looks like you are opening a book - eh - kinda) that his therapists showed him, to the ASL "done" sign (it makes more sense). We also looked up "hurt" and a few other ones to work on him with. I'm looking for good ASL sites, so if anyone knows any I'd appreciate a heads up!

I love my kids, I will do what is right for them… what I feel is best for them. I just hate seeing them in pain, begging in their eyes, just for some help, and I have no idea how to help them.

Anyway – I need to do some research and such so I better get to that since Nathan is sleeping…

OH I almost forgot!!!

A couple of links to blogs that I want to share.

First off I want to thank Melissa over at "A Pocket Full of Memories and Thoughts" for the kind words she said about the blurb I wrote for my blog description, and the blog she just put up about Bullying because yesterday I decided that I am pulling Cal out of school next year and Homeschooling him.. (more on that later) .. and I urge you all to go listen to the song she put on her blog by Mark Wills called "Don't Laugh At Me" that I think a lot of parents of unique children would appreciate. It is a wonderful song! Melissa's daughter Isabella has Spina Bifida and is one of those wonderful lights that inspire many people!

Secondly - I want to send you all over to "Don't Bite The Dog" where Jayme's Mom talks about how she struggles with just the right answer in response to explaining to other kids why Jayme, who has autism, doesn't act the same way they do. It's titled: Well Kids, It's Like This... It's a great insight on something that a lot of us struggle with.

That's just two of the things I wanted to say :) Thanks for reading!!

Grreat Insurance Advice

Octamom posted a great blog this morning called "May I Speak With Your Manager?" about dealing with insurance companies (specifically about hearing aids) but I think it is generally good advice for dealing with insurance companies for any reason. Go check her out!!