Sweet Dreams

I love to watch this guy sleep! 

I just laid him down for the night and he's already dreaming away.  I have to wait until he's sleeping like a rock to put the cannula on.  Maybe I should be putting it on earlier and then letting him fall asleep while it's on but that seems like torture.  So, this is the way we are doing if for now.  It really hasn't been a big deal at all.  After I took it off of him this morning I held it up to my hand and then my face to try to feel the air.  Nothing!  I immediately ran to Rico because this is his area of expertise (and soon to be mine too)!  I didn't think it worked!  He said that the amount of oxygen that Reid has been prescribe is so little that I wouldn't really "feel" it.  As long as it's working, then we're good!  I wish I knew what that sweet baby was dreaming of! Goodnight Reid!

Lil' Pirates at VSU!!!

LET'S PLAY BALL!!!  Well, baseball has begun and the men in my house are HAPPY! :)  Briggs' team, the Lil' Pirates, got to run out onto the field while the Valdosta State Blazers were introduced!  I LOVE the shots of them running their little hearts out!  I also LOVE, LOVE, LOVE the shot's of them while singing the National Anthem right before the game.  Way to go boys!

Blazers getting ready to take the field with some Lil' Pirates!

Go Briggs!



Chess Tournament

Spencer and Briggs really enjoy chess since Rico taught them how to play.  Spencer is in the Chess Club at school and decided he wanted to play in a tournament this weekend.  When we arrived at the tournament we found out that Briggs could play also.  So, we entered both of the boys, hung out for a bit, and then took off with Reid for some shopping.  I don't think I could stand to sit around while they played game after game for hours.  We got there at 9:00 am and everything was over around 4:00 that afternoon.  The boys both won a door prize! Yay!  They are planning on playing next Saturday in another tournament on Jekyll Island.  Go guys!  Here are a few pics from the day!

Lake Park Elementary got first place out of the elementary division!  Way to go LPE!!!

Such concentration!

Reid was concentrating too!

There's a smile!!

And another!!

Four Months Old

Reid is four months old today! Happy four months ReRe!  This last month has been a busy one!  I feel like time is really flying now.

Reid had a sleep study this month.  We went to Shands in Gainesville and had the sleep study done on the 21st and the consult the next morning, the 22nd! It took a little while to get our guy comfortable after being "hooked up".  However, once we got him down, he stayed down.  It's the little blessings...right?  I was so thankful that he didn't keep waking up as they came in to monitor things.  The nasal cannula was the one thing he couldn't stand and the reason why it took three tries to put him to bed.  He FINALLY figured out how to suck his thumb while the cannula was in. Thumb = Happy Reid! :)  The next morning we met with the pulmonologist.  I really liked her!  She said that Reid didn't have any sleep apnea! Yay!  I had all my friends and family praying for no sleep apnea. What Reid did have was lower oxygen saturation levels, which I didn't think to ask for prayer on that!  Reid's O2 sats dropped to 88 or 89 at times during the night.  Dr. W said that she liked for them to be higher than 90 and while he was on oxygen his sats were 95!  So, we now have oxygen for Reid to wear at night.  My immediate thought was...OH NO...A CANNULA EVERY NIGHT!?   Rico works for a home medical supply company and they brought out pediatric nasal cannula for infants. Reid seems to do much better with this style of cannula so it hasn't been that big of a deal.  It's funny how my perspective is so different now. If I had been told that Spencer or Briggs had to have oxygen at night as babies, I would have completely freaked out. But, with all that we've been through with our Reidster, I was actually calm about it. I am just so thankful for no sleep apnea right now! Now, Dr. W does want us to come back to have an echo, chest x-rays, and swallow test to rule out any problems that would make Reid's O2 sats drop at night. She monitored his sats while he ate, cried, and sat in a car seat. He passed with flying colors, so that was GREAT! So, new prayers...no additional medical issues that would cause his oxygen to desat at night.   I was really excited when Rico said he spoke with a respiratory specialist at work and she mentioned that Reid would really be adding some pounds now that his body wouldn't be working as hard at night to keep his sats up.  That's a shout out to you Jan!!  That actually made my day!  You see, Spencer and Briggs were both chunky little monkeys and I've been wondering when Reid would turn into a rolly polly!  He's not thin by any means...it's just that I love a chubby baby! :) 

On a lighter note....I LOVE Reid's personality!  He is really "chatty" with us lately.  He also gives the cutest "looks".  He knows how to work his eyebrows and often raises that left one at me like his GrandDadE (my dad)!  Reid's hair is starting to curl.  Briggs had curls that popped up at about 8 or 9 months.  Reid's hair is already showing some signs of curls.  Most of the time now, I try to slick the top down and let the sides do what they will.  The top of his head is looking quite fluffy lately.  Hmmmmm.....we'll have to see what happens with that! Ha ha ha!  Reid can go from happy to feisty in about 2 nanoseconds when he wants a bottle!  He has also been poking out that bottom lip when he's not to sure about something.  Of course, that causes all of us to come running.  Yup! He's rotten!  Reid has his check-up Wednesday so, I'll posts his stats then.  Here a few pics of our guy today!

I love you more than you'll ever know Reid!!!

Oh no! The lip! :(

Reid sleeping on the way to the sleep lab. Ha!

All of this stuff is going on MY baby?

I guess so!  Find that thumb Reid!!!

The New Miracle

It's official!!!! They've STARTED!!! 

Shortly after Reid was born we discovered that a pharmaceutical company was in the process of developing a drug that can (fingers crossed...toes too!) help patients with achondroplasia.  We have been reading, and reading, and reading waiting on the announcement that they have started.  That day has finally come and here is the article!  I'm still wanting them to update the pipeline, but I'm sure that will come soon.  Right now everything is in phase one.  Phase two, which will involve pediatrics, should hopefully begin around October 2012.  Our geneticist at Johns Hopkins informed us that she has been asked to participate in the clinical trials.  I'm hoping and praying that she deems it "safe" and that she participates.  Rico and I would heavily consider allowing Reid to be a part of the clinical trials. She along with other specialists at Hopkins are pretty amazing.  BioMarin explains that the peptide that has been developed will hopefully be able to "counteract the effects caused by the activating FGFR3 mutation."  Read about it here! :)  I'm hoping that it can do what it's done in animal models and that it will mean less surgeries and procedures for kiddos like Reid. 

When we found out that Reid would be born with some form of skeletal dysplasia I told Spencer and Briggs that I would ALWAYS pray for a miracle, no matter what!!! At that time I was praying for a miracle that, number one, Reid would LIVE, and number two, that he would be born without any form of skeletal dysplasia.  I told the boys that I would never stop praying for a miracle for our baby and that if he was born with skeletal dysplasia, I would find our new miracle to pray for.  I pray all kinds of things over Reid.  I pray that he will be healthy and have few complications that can sometimes be associated with achondroplasia.  I pray that he will be happy as he goes through life.  I pray that he has an infectious personality that people can't get enough of and they just want to be around him all the time.  I pray that he's outgoing and never meets a stranger.  But, mostly at this stage in our lives I pray for our new miracle.  I pray that BioMarin's clinical trials will be successful and that this peptide will come through for Reid and so many more PRECIOUS children with achondroplasia.

Chosen

I knew before I had Reid that I would never be the same person I was before.  I wouldn't think the same, see people the same, or view the world the same.  This week has just been one of those weeks.  I'm so acutely aware of how people lead very different lives.  For those of us that have this new "view" on the world, strength is one of the most important things in our lives. 

My very good friend's little boy has pneumonia and he has been taken to a hospital out of town for more intensive care.  My friend called me this morning in tears to break the news that she was about to take an ambulance ride to the new hospital with her little boy where they would then insert a chest tube to relieve some of the fluid built up in his lung.  I know things like this happen all the time to all sorts of people.  It's just that this family has already been through so much with their little man.  You see, he was diagnosed with autism three years ago.  I've watched my friend be so strong for so long, working so hard to give him the best...the best doctors and the best care.

Last night as I drove to go visit with them in the hospital I couldn't help but do the "why me?" or "why us?"  There I was fighting tons of Valentine traffic trying to get Starbucks to my friend and her hubby thinking they would be up for a while with their guy.  I kept thinking about how sick he was and he already has challenges in life. I was also thinking of how I would then drive home to watch my baby scream as we do stretches for his torticollis and how he already has challenges in life.  See what's coming? Yep! Full on PITY PARTY!!  I don't do that very often.  I stay optimistic that we will be just fine and that our life is a wonderful one...because it is! :)  But, I'm human and I do have moments when I feel that that optimism has been drained out of me.  As I chatted with my friend before I left last night, I asked her..."Why do you think some people will go through life and never experience something so life changing and others will?  Why us?"  Well...I LOVE MY FRIEND!  She just said, "I like to think we were chosen."  Oh my....so simple but so true!  She immediately made me think of the poem my daddy sent me when I was at the end of my pregnancy with Reid.  The Special Mother by Erma Bombeck still makes me cry.  Please don't join in on the pity party, it too shall pass.  Pity parties can come when you are worn out too! Ha!  Between work, three kids, doctor appointments, and just life in general...it was bound to happen. Oh, did I mention we are doing all kinds of stuff to the house lately?  Maybe all the painting and home projects added to the tiredness, which lead to...You see where I'm going with this!  Anyways, I just need to recharge and remember I was chosen! I was trusted!  I am honored!

The Special Mother
by Erma Bombeck

Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The Patron saint will be Cecelia"
"This one gets twins. The Patron saint will be Matthew"
"This one gets a son. The Patron saint.....give her Gerard. She's used to profanity"

Finally He passes a name to an angel and smiles. "Give her a disabled child".

The angel is curious. "Why this one God? She's so happy"

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you"

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"

The angel gasps - "Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"

"And what about her Patron saint?" asks the angel, his pen poised in mid air.
God smiles "A mirror will suffice"

Happy Valentine's Day!

Well it came and went in a flash! Valentine's day tends to sneak up on me and it's always a  mad dash to get the boys' Valentines ready to go.  This year we got a cute idea from Pinterest and it made everything simple and sweet.  Here are my cuties hangin' out in red! LOVE these guys!

Thank you Pinterest for the idea!

All smiles on LOVE day!

I need a weekend to recover from my weekend!!

Some weekends are just busier than others...BOY, was this one ever busy!  Friday night we were on the hunt for some new formula for the Reidster.  He's been quite a gassy baby and nothing seems to be working.  We've tried drops prescribed by Dr. G and gripe water.  He had already switched to Enfamil Gentlease thinking that would do it.  So, Friday morning I called Dr. G back and he said switch to Enfamil Nutramigen.  That night we ran out to get some and while we were out grabbed some Dr. Brown's bottles.  I want to hear about these if you use them!!  They weren't around when I had Spencer and Briggs...well, at least I don't remember seeing them.  They sure are weird looking and not cute at all! But, whatever makes Reid a happy man, I'm game for.  Bottles..check!  Formula...check! Birthday cards...check!
Here's our dude before we headed out...we love experimenting with his hair!

We had two birthday parties to go to this weekend!  Plus, my b-day was Saturday! Yay for AQUARIUS BABIES! ;)  Any who...we got up Saturday ready to tackle the day and BAM!!! Rico had a back attack!  We thought he pulled something but now we are thinking kidney stones! Eek!  He's going to the doc tomorrow.  Oh, did I mention that I've also caught a cold?  Great timing, I know!  Well, we made it to the parties and the boys had a BLAST!  I mean come on...TWO parties in one day! It's a kids dream!  First, we went to Seth's swimming party!  They LOVED swimming in February.  Then, it was off to Dalton's party at Jumpin' Jacks!  Who doesn't love a building full of bounce houses?!  I guess I started feeling bad with the cold during the second party...didn't take any pictures.  Plus, it was hard to keep track of my guys running all around.  I'm so glad the boys had fun!

Even Briggs didn't look tan!  :)

Reid hung out poolside sucking his thumb!

When we got home Briggs started throwing up. :( Yep, stomach virus!  It was a jammed packed weekend and like I said, I could use a weekend to recover from our weekend.  Oh, here are a few photos of Reid in mom and dad's bed Friday morning before all the sickness hit.  Now, he's banned from our bed until mom gets over this cold! ;) 

I love waking up to this face!!