Hands on a Miracle

The Cutest Couple Ever

2009-10-05T14:06:00.000-05:00

Pics at last...technical difficulties...arrrrrgh!

2009-07-30T00:02:00.007-05:00

It's on the list....

2009-07-27T23:51:00.011-05:00

To my two dear friends who have no boys, this is why mothers of boys have that "the lights are on, but nobody's home" look in their eyes, even years after all the boys have left the premises.

I had every intention of updating this site tonight, but after:

driving 4 hours while entertaining a 2 year old in a 2 seater roadster before the sun came up,

attending the first day of PT when said 2 year old and PT are trying to decide who's boss,

catching up with and commenting on all the facebook friends I love and adore and can't wait to wake up and hear from each morning,

doing 6 loads of laundry and making changing sheets on all the beds to prepare for the next round of guests,

cooking a meatloaf, mash potatoes, corn and biscuits for hungry baby daddy that just arrived from offshore,

watering the plants that were sizzling in the 105 degree Texas heat with no water for 4 days while caretaker was living the life of Riley (who is he anyway, and why has he not written a book?),

going to Yoga to further enlighten oneself so as not to guilt generation currently being reared,

I am too dadgum tired to be creative and download the 10,000 pictures I took of my adorable, beautiful, healthy grandsons this weekend. Even though my favorite thing in the whole wide world is showing them off and sharing them with the world.

Maybe tomorrow.

O.K. Here's a sneak preview.

Jordan Trae Meier....finally here!

2009-06-04T00:53:00.003-05:00

Probiotics

2009-05-18T12:08:00.002-05:00

When Bryan came to stay with us, he had a runny nose almost constantly. It seemed as though anything he put into his mouth or near his nose set off an allergic reaction and the un-ending cycle of his nose pouring, then drying up. And every trip outside ended up with stuffy eyes, runny nose, etc. Pink eye seemed to be at least a bi-monthly visitor to his immune system. He had battled chronic constipation since the day he came home from the hospital, and had recently been in the E.R., as the constipation became so severe he had to have medical intervention to help him with it. The kid simply could not catch a break. This on top of all his "major" medical issues...hydrocephalus, resulting in a shunt and hypotonia which causes him developmental delays in his gross motor skills. He rarely felt well an entire day, much less a whole week without something setting him back.

As soon as Bryan went back to see his old pediatrician here in Houston - after giving us instructions and medication to get everything else cleared up, she handed me 2 boxes of powdered probiotics and said, "Give this to him...it will change things".

Now, I have a dear friend who has been using supplements for a while - and if you know me, you know I am not a vitamin, supplement, type person. I've just never been one to take a lot of stuff...I rarely even take a tylenol. At this point, I was willing to try anything. And the fact that Bryan's pediatrician - who I absolutely love and trust more than any doctor we've ever encountered - not only recommended it but handed it out in her office - was enough for me to try it.

That was nearly two months ago. Immediately, I noticed Bryan was having regular bowel movements - at least once a day, which he has NEVER done previously. (Now once a day the majority of the time, at least every other day). Once he healed from what was going on at the time, Bryan has not had one bout with allergies, not even one runny nose. No pink eye. No ear infection. No cold, cough or bugs. And all of this while recovering from major surgery. This is the longest he has ever gone without some type of infection or complication.

While the probiotics have not changed Bryan's major issues, I believe they have enabled him to stay well throughout his recovery which has helped him become a little stronger every day. I'm sharing this because it seems lately I have heard so many LP parents out there discussing the latest bug their child has picked up - and if this has helped us I am hoping it will help you too.

If you are interested, please email me and I will give you more information on what we use - or just ask your pediatrician if it might be helpful to your child. I'm sure they can point you in the right direction. There is LOTS of research on the internet as well. It has changed Bryan's life so much that I had to share our experience with everyone.

Family, Friends and Faces

2009-04-18T20:46:00.006-05:00

My "sick of the hospital" face....

My "seafood" face.....see....it's Goldfish...

*disclaimer - Grampa taught me this trick....YaYa says its not nice.

My "what! no more cake?" face....

My "YaYa always gives in...more cake!" face...

My "too much cake and punch - after baby shower" face...

How 'bout those adorable legs???

My Auntie Shel...who is teaching me Kung Fu.

My friend Collier....who teaches me about Scooby Doo....

My Tia Gretchen....who loves me more than Paula Deen cake.....

My Mommy and Me on Easter Sunday......'nuff said.

Boy, am I tired!

2009-04-10T11:08:00.002-05:00

For those of you that don't know, Bryan is staying with us for a while so he can be closer to his doctors and get the medical care he needs to get on his feet....literally and physically. Bryan has been with us for 2 weeks now and we have been doing the follow up for his shunt and getting everything else switched to Houston. ENT, PT, etc. Right now the hunt is on for a great nanny to come in and help out my daughter Shelby, who is currently caring for Bryan while I'm at work (and doing a GREAT job of it). Shelby is due with her first child May 28th, so the clock is ticking away. I have an interview today with a young lady who is an early childhood specialist student in her junior year and she is planning her masters in OT. I'm really hoping she is the one.....

So, this week we put up 2, two, TWO cribs at our house, rearranged the entire place and babyproofed everything. Wow....talk about life changing. We absolutely love having Bryan with us. He is making great progress, finally, and is starting to gain some weight back and sleep through the night. He had some complications after surgery that would probably be considered minor, but all of it really got him down and he was weak, lost weight, and lost all of the skills he had recently aquired during his month or so with the PT. Hopefully he will be able to pick them all back up quickly...and reach our goal of walking by the end of summer.

Surgery Successful!!!

2009-03-14T22:28:00.006-05:00

Whew. We got home Thursday night, and I have been so busy I completely forgot to update here. Just checked my email and Jennifer reminded we left a lot of people hanging...thanks Jennifer.

Surgery went very well.....only one minor issue...Bryan contracted THE FLU on the day of his surgery...we did not find out until Tuesday. He was more lethargic than he should have been and because of this they ran some tests and discovered the flu. Although he had a few days where I was very worried about him, he is doing great now.

We didn't do much for his bday yesterday, we still have an ice cream cake in the freezer...but we have had a great weekend of resting, watching cartoons and root beer floats. Bryan still wears down pretty easily, but right now his Grandpa is pushing him around the house in his new coupe car that we got him for his birthday and he is loving it!

Brandi will come back to Houston tomorrow to pick him up, then back here in 2 weeks for a follow up, then a month later for a CT scan. They went ahead and gave him a CT scan before left the hospital, as he was vomiting and they didn't know whether it was the shunt or the flu. The CT looked great...it was the flu.

You can already tell the shunt has made a difference. Bryan doesn't get tired of holding his head up for long periods, and his fontanel, which was bulging so much you could see his hair pulse with each heartbeat before surgery, is now soft and sunken like it should be. The veins around his forehead which were very prominent before are now much less so.

Bryan has 2 stitches in his stomach area and from my estimates about 7 in his head behind his ear. (Dr. Dauser said "a stitch or two"...so I was taken back a little when they changed his bandage to a clear one.) The shunt was hardly visible the first day, but as the swelling has gone down you can clearly see the valve behind his ear, and because his chest is so small you can see the tube under his skin on his chest cavity which runs down to his perinatal cavity. Once his hair grows back, it won't be noticeable on his head unless you know he has had the surgery.

Thank you to everyone for all your prayers, and for your patience waiting on my updates. Hopefully it is all downhill from here out. :0)

Surgery on Monday, Birthday on Friday

2009-03-05T00:31:00.004-06:00

Surgery is Monday at 6 a.m. at Texas Childrens Hospital in Houston. Bryan should be out in a few days and back home in Ingleside in time for his birthday on Friday. A big THANK YOU to everyone for their prayers and support.

Will post on Monday as soon as the all clear is given. In the meantime, YaYa and Grandpa are headed to the Texas Hill Country for a few days of R&R before surgery on Monday.

Bryan and I went shopping for some new clothes for his birthday this week.

We found a couple of really cute hats for him. I snapped this pic on my camera phone.

Home from the Hospital...Birthday with Daddy

2009-03-03T22:55:00.005-06:00

Word from Dr. Pauli today. We need a shunt. The pressure on Bryan's head is increasing and it either needs to be monitored internally with possiblility of a shunt later....or a shunt now as there is pressure on his optic nerves. We have contacted the neurosurgeon at TCH and are waiting on a schedule for surgery.

It has been a wonderful week of wagon rides, park visits, root beer floats, home cooked meals and PT. What a great week! This little boy desperately wants to walk on his own. Such determination. We cherish every moment with him and can't wait to see him running around on his own in the back yard.

Praying that surgery goes well and there are no complications so Bryan can get back to PT and keep up the progress he has been working so hard at.

Hope you enjoy the pics as much as we do. We had a little birthday party for Bryan and Casey the day he was released from the hospital as Casey will be offshore working for their birthdays.

The elusive village of LP strikes again

2009-02-28T15:46:00.004-06:00

So we are waiting on a 2nd opinion from Dr. Pauli next week as Bryan has been recommened to have a shunt placed to drain the increasing fluid from his 3rd ventricle. It has been a long week, which started with a simple neurology check up with a new neurologist who apparently treats the hidden village of LP that Tonya speaks so fondly of. At least, according to her - she has treated many LP. However, she took a look at Bryan and after asking us about his breathing (normal for him, I state) and his development delays (he is making great progress now, I state) and his head control (he is tired, and has been fighting allergies, and doesn't particularly want to look at you as white coats scare him, I say) she sent us immediately to the hospital for a CT, then had us check into the E.R. saying it was too risky for him to leave the hospital as his spinal stenosis was so bad that any minor accident could leave him paralyzed or worse.....

After several hours in the E.R., a much more experienced neurosurgeon (who has agreed to treat Bryan from here forward - no more new dr.s) came in and said that although this certainly was not an emergency and the neurologist jumped the gun, he believes Bryan needs a shunt as his head size is increasing at a rapid rate. (2.5 cm from 12/19 to 2/23) Before leaving the e.r. to be admitted for an MRI the following day, Bryan also had an exam by an opthomalogist who states that Bryan has VERY mild pressure on his optic nerves...which means the fluid in the ventricles is causing pressure on his eyes.

We have sent Bryans MRI and CT scans, along with HC to Dr. Pauli and are waiting on his comments. Hopefully we will know something by next Tuesday.

It is so frustrating. I wish we lived closer to some of the other bloggers...it seems no one in Texas has much experience here with dwarfism medical issues. At least this time we have a neurosurgeon involved who respects our decision to get a second opinion and doesn't chastise me for speaking to him in medical terms.

It amazes me how many people have children with medical conditions and don't bother to educate themselves. I wonder where we would be now with Bryan if it weren't for the internet. Although both my children were extremely healthy growing up....if a doctor told me to do something or that my child needed something, I took it for granted that he/she knew best and did exactly what they said. Boy, are those days over.

A quick update on Bryan's stats:

HC 23.5 cm
Weight 23.4 lbs.
Length 28 inches

Bryan is rolling everywhere and army crawls - and has just started bearing weight on his legs and is learning to climb (really quickly). After one month in PT - he is making GREAT progress. His ear tubes have made a huge difference, no infections since they were inserted...but his nose still runs like a faucet and due to all the congestion he snores heavily at night. Oh, and Bryan alos has 5-6 words he uses on a daily basis...and we are working on more!

Who Is That Masked Man?

2009-01-21T21:08:00.003-06:00

This photo is ridiculously hilarious...so I just had to share. Traci took it on her phone, and she says Bryan loved the mask and was laughing hysterically the whole time he had it on.

6 more days and the job is done! Not sure what I'm going to do at this point...but my dream is to wear overalls every day, have a great garden, fry green tomatoes in the summer, bake bread in the winter and be a full time YaYa. Doubt it will work out that way just yet...but the first step is to dream it, right? If the past 2 years have taught me nothing else, they have taught me that faith is the utimate power.

We have a new grandbaby coming in late May/early June. My daugher Shelby is having another grandson for us. Although I was dreaming of pink - she is very excited to have a boy to grow up with Bryan. And so am I. My nephew is also expecting a baby boy the same month as Shelby. Terry and I cherish our time with Bryan and we are so looking forward to spending as much time as possible with these boys. It will be interesting to say the least. Not to mention my BFF Gretchen has 2 boys as well. I see lots of camping trips in our future.

Lots of changes coming for our family....mostly right now I'm looking forward to sleeping for about 3 days and then having absolutely no agenda. And spending as much time with Bryan as possible. And reconnecting with my family and friends that I have regretfully put aside for work this past year. You all know who you are - and I thank you for never abandoning me and always being there for me when I needed a shoulder to lean on.

I quit my job.

2009-01-14T20:44:00.002-06:00

Crazy as it sounds in this day and age - I have given my notice and will be officially unemployed as of January 30. More to come......

In the meantime - heading home Friday to see my little man....

We love Santa

2008-12-14T20:43:00.003-06:00

Bryan has been with us for a week, which accounts for the reason I have been a little scarce lately. We had an awesome week - starting with his appointment with the Skeletal Dysplasia Clinic at Texas Childrens Hospital for his checkup...and ending with a trip to see Santa and a little shopping. I will post more about his current stats and his progress once I've had a little time to recover....I'm still not sure how you Moms blog while raising these kiddos...I'm thinking you all must be up at 3 a.m. on your computers. Here's a few pics for now....enjoy! (by the way, he LOVED the ears, it was the jolly old man himself who caused the crocodile tears)

ABC News Special - Dwarfism Gene Possible Cancer Cure?

2008-11-20T22:37:00.003-06:00

Dwarfism Awareness Week - Educational Program

ABC News is running a special on a group of people in Ecuador with dwarfism tonight and their apparent immunity to cancer. I just happened upon it by mistake, and it is running now if you are interested.

They call me....THE CORN DOG KID

2008-11-08T23:11:00.002-06:00

Bryan LOVES corndogs.

To set the record straight - I hate for him to have junk food, but this was a few days after surgery and we were letting him eat whatever he wanted, just so he would eat something. Shorly after this picture was taken, he projectile vommed all over me, including out his nose. Guess corndogs after surgery is not such a great idea after all.

He and his Grampa are sleeping now as I'm typing this. I have had a great day with him. Although he is still not as strong as he was pre-surgery, he is getting better and stronger by the day now. It really takes him time to recover from things.

www...What a Wonderful World Wide Web

2008-11-06T23:09:00.004-06:00

I can't believe how this circle has grown. It is overwhelming to me at times. What started as a few of us Mom's and Grandmothers needing an easy way to communicate with each other has turned into a a worldwide network of support that simply did not exist before.

I have to give Tonya a huge shout out as she pretty much single handedly started this whole thing. And to POLP as well, as that is how I found Tonya in the beginning.

I feel so fortunate that Bryan will have this network of support already established for him, and that he has come into the world in a day and age where acceptance is "what is normal".

What a wonderful world.

Prayers for Caden

2008-11-06T10:43:00.004-06:00

If you are reading this, please include Caden and his family in your prayers today as Caden is having some complications from surgery and his family could use a little extra prayer today.

Caden

Thanks!

Hospital Garb and Bed Head

2008-10-30T23:06:00.003-05:00

6:30 a.m., YaYa can't finish her coffee (even though the ladies on the other side of the admitting office glass OBVIOUSLY have coffee in their cups) and you have extreme bedhead from the night before (YaYa has to teach you early about "gel"), yet you are still my happy, smiling Sugarbear. Of course, you had absolutely no idea what was in store for you....

After surgery, Bryan was not so pleasant. When he opened his eyes after waking up, if anyone was touching him other than Brandy, Casey or me....they got a REALLY dirty look. But word on the street is he is getting back to his normal, sweet self again. Going back tomorrow to kidnap him for the weekend...and hopefully sneak him a few gummy worms (his fave) from his Trick or Treat bucket.

If he feels well enough, YaYa and Grampa got him a special costume to put on and take pics on Grampa's new Harley. We'll see. And Brandy got him a Batman costume, because - you know Halloween is not complete unless you have 2 costumes! (See Katie - we're starting a trend!)

Hope all the kiddos out there have a rockin' Halloween. I CAN'T WAIT to see all the pics of the costumes. (hint, hint).

Candi

YaYa to Bryan

2008-10-28T21:32:00.001-05:00

We're home. Bryan and Brandy are home. Everything went just as planned. Bryan is grumpy...really grumpy, and Brandy is exhausted. Of course, she is with him tonight. Maybe tomorrow I will relieve her some as I'm sure she will be even more exhausted. She didn't sleep for worrying last night.

I have pics of Bryan before surgery this a.m. that I will post when I get home tomorrow. At 6:30 a.m. he was all smiles and full of p and v....by lunchtime he was pissed if anyone but his Mom, Casey or I touched or even looked at him.

Now for a speedy recovery and back to our loveable, adorable kid. I have to go back home at some point tomorrow to work on Thursday and Friday, then back here again Friday after work.

THANK YOU to everyone out there who included us in their prayers (and we know there were lots of you). Thank you from the bottoms of our hearts.

Bryan's YaYa and all of his family.

Adenoids Out, Tubes In

2008-10-26T21:20:00.010-05:00

October 2008

October 2007

Then....

Now...

Leaving tomorrow immediately after work to make the drive home. Bryan has to be at the hospital at 7 a.m. Tuesday for surgery....adenoids and ear tubes only...no tonsils. Keep us in your prayers, and pray that all goes well with anesthesia, and that the doctors do a great job. Will have my laptop, so will post an update Tuesday evening. Hope you enjoy the pics....

Everythings Bigger in Texas!

2008-10-23T19:14:00.006-05:00

You have not lived until you have had a foot long deep fried corndog while listening to Honeybrowne play Texas Angel live in the background. We had a great night, Bryan and YaYa even did a little two-steppin....figure I better get it out of him now before he is horrified at the thought of being seen in public with me....much less dancing!!!!

Seriously, it was a beautiful night....clean, crisp air - which is a change from the hot muggy humid weather which is norm for South Texas. The wind off of the water was even a little nippy. Bryan had a great time, and enjoyed EVERY LAST BITE of his foot long, deep fried, heart attack on a stick (stick removed for safety, of course!).

And of course, Aunt Cathy worked the beer booth!

We THOUGHT he was tuckered out and so left to take him home for a much needed bath and bedtime....turns out it was YaYa and Grampa who were worn out. After a short nap on the ride home in Grampa's Mack truck, Bryan got his second wind and entertained the whole family until it was way past everyone's bedtime. We can watch this kid for hours!

Time seems to stand still when Bryan is there....everyone stops what they are doing to entertain him, or more so these days...be entertained by him. We can never get enough. Hope you enjoy the video and pics as much as we enjoyed being there!

FlashBack

2008-10-21T18:18:00.003-05:00

A year ago....you and Nana (Best).

Now - happy and on your way....you've come a long way baby!

Surgery postponed again

2008-10-12T20:17:00.002-05:00

Still no surgery....postponed again because Bryan is now fighting his second infection since the last proposed surgery date. It is a catch 22 situation. Surgery is now scheduled for the 28th. We had another long night Saturday....Bryan stayed with us and developed a runny nose (pouring is more like it) and a fever, and had to sleep in his swing so he could breathe. So Brandy will call the dr. tomorrow and start another round of meds...and hopefully all will be well by the time surgery rolls around again. Frustrating to sit by and watch him go through this.

Through it all though, he is a trooper. As you can see, he is always smiling and nice new surprise for us this weekend...he can sit up all by himself now! So, he is making progress.

I have not been updating as life has been a little hectic here. Terry and I spent a weekend in Vegas for our 25th anniversary, and Terry is now working back in Ingleside...so I am mostly home alone. I will try to be better about updating here, but I just haven't felt like I've had much to say and after being on the computer at work all day, the last thing I want to do is look at a computer screen. But I do check in occasionally to see how everyone is.

I will post as soon as we know something about surgery, and I have some great pics I will dropping here as the week goes by.

Hope everyone in Blogger Land is happy and healthy.

With YaYa and Grampa...where my bread is buttered!

Go Longhorns! Texas rawks!Me and Tia Gretchen...she loves me so much!
Grampa let me brush my own teeth....with Traci's toothbrush!
Me and Traci....smile for the camera!

YIKES IKE

2008-09-16T01:03:00.003-05:00

After an exhausting few days, we are home. We drove in yesterday (4 hours) and watched nervously as the damage changed throughout our drive...limbs strewn about, then entire trees down, some REALLY large, then roof damage and store fronts with no glass left. Surprisingly, our apartment complex had very minimal damage. A few covered parking areas had the covers toppled over and there were trees and shrubs uprooted, and some siding strewn about. No water, no broken windows, no damage inside. HUGE sigh of relief, especially considering the fact that a few miles down the road people lost EVERYTHING. A large part of my family lives about 7 miles south of us, between us and Galveston and on the back side of Galveston Bay. Several of them have severe damage - one house has been turned the other direction and most others have water damage as storm surge filled the entire house. We drove down to check on things but were turned away as only residents were allowed to enter. The debris line was several blocks past the coast and several feet into the trees. But everyone is o.k. Things can be replaced.

It is interesting back in Houston. There is no electricity in most places, and if you have running water you are your neighbor's best friend. When Terry and I drove in yesterday, there were no working street lights and no gas to be found. Today there are lines for blocks for gas and ice. Grocery stores are beginning to re-open, but the smell from rotting food is wretched and they are only selling non-perishables.

Once we saw that the house was safe to stay in, we drove 4 hours back to Ingleside and I got up this morning and loaded Terry's truck with gas cans, ice and groceries and all the cash I could get out of the bank. and drove 4 hours back to Houston. I had to stop to fill up with fuel at each town along the way because I wasn't sure at what point I wouldn't be able to find it anymore. It ended up being about 100 miles outside of the city. The city is pretty much shut down so that people can clean up and clear away debris, find their loved ones, and for some - figure out what is worth saving. I am scheduled to return to work on Wednesday, but I am wondering if there will be electricity by then or if all the glass downtown will be cleared for pedestrians. It will be interesting to see how 4+million commuters will reach their destinations safely if there is no electricity for stop lights. Tomorrow is another day and hopefully things will have progressed by then, but for some areas I think it will be quite a while before things are returned to "business as usual".

Please include the people that were affected by Hurricane Ike in your prayers tonight. We could all use it. Thankfully, we got a nice little cold front that has brought relief from the heat. Texas with no electricity in 90+ degree heat, no running water and emotional stress is not a pleasant place to be. And I won't even mention the mosquitos. But people are pulling together and helping each other. That is what we do here.....help your neighbor.

I understand that some states in the northeast were still feeling the effects of Ike yesterday in the form of 70-80 mph winds. This guy really meant business! If you were one of those - I would like to hear about it.

Bryan was much better when I left. Casey and Traci did the saline solution/suction treatment and used Baby Vics and it seemed to be the magic combination. He slept the entire night and into the morning today. Although I didn't want to wake him as he needed rest, I had to hug and kiss him goodbye before I left. I won't see him again until AFTER his surgery and I am not very comfortable with that. We'll see if I actually make it without getting in my car and driving all night to be with him and Brandy and Casey while he is having surgery. I know will be needed much more afterwards, but we'll see if I make it.

Thank you all for your prayers and good thoughts. Godspeed.

Candi
YaYa to Bryan

A Long Night

2008-09-12T23:44:00.001-05:00

Quick update. We are all o.k., we are in Ingleside/Corpus waiting for the storm to pass. We all stayed here, everything is shut down, boarded up...even Walmart is closed! We're not sure what the situation will be like when we return to Houston. We are 20 min. from Galveston and live 2 miles from Clearlake/Kemah which have been on the national news all day with pics of the tidal surge and homes, etc. under water. Hopefully tomorrow they will show the area we live in during daylight hours so we will get a better idea of what we will be dealing with. Bryan is with us, we have all been staying together at the house in Ingleside. He has REALLY been having a rough time at night. He can't breathe when he lays down at night. His nose is stopped up and stays that way. We have to suction his nose continually all night, at least once an hour. He does o.k. during the daytime, but as soon as you lay him down at night things get really bad. He is fighting for air with each breath. 2 more weeks til tonsils/adenoids come out. I have been praying really hard that the surgery will help his breathing, which in turn I hope will help everything else...his physical development, sleep pattern, etc. As soon as we know more about the hurricane aftermath I will post. We will have lots of pics I'm sure, we are already seeing lots of damage in our area.In the meantime, please pray for Bryan to breathe well at night so he can rest. It will be long night tonight.

CandiYaYa to Bryan

Between A Rock and A Hard Place...

2008-09-09T22:42:00.010-05:00

So basically, our two homes (one house, one apartment) are equal distances on opposites sides of projected landfall. Waiting, watching and preparing. Luckily, we are heavily insured. The difficult task is managing our family which in the past few years has become a scattered family of young adults, (with their own ideas of independence) and getting them all on the same page as far as evacuation goes.

My sis, Cathy, lives in our house in Ingleside with her two teenagers, Mikle and Britnee - and her older son JC. As Terry is in Corpus working right now (20 miles from Ingleside), tomorrow afternoon they will all begin preps to batten down the hatches at the Ingleside house. Casey will help until mid-day, then he and Traci will take Bryan to Terry's parents' ranch in the Texas Hill Country to get him all settled in before the evacuation routes get bogged down with traffic. Terry's brother Gary and his family and his sister Patti will head that way as well. Look out Grannie and Grandad Hill because it looks like you guys will need to stock up on groceries!

I will make a decision tomorrow whether or not to leave Houston with our daughter Shelby and her boyfriend, Robby - and either go to Ingleside to wait out the storm or head to the ranch as well if it looks really bad. Hopefully things will not get too bad at either location and this will simply be a lot of rain.

Of course, if we go to the ranch my sister and her family will come as well. Thank goodness Terry's parents have plenty of beds and motel very close by the house in town.

Brandy is staying in Ingleside with friends, but her Mom and sisters will be leaving tomorrow to get out of town before the crowd hits the evacuation routes. I have not spoke with her yet but will talk to her tomorrow to make sure she has a backup plan to leave if the storm looks very bad.

As adults, Terry and I have never left but simply buttoned downed and planned to shelter in place. However we always sent our kids to the ranch with Terry's parents when they left. The only real reason I'm even considering leaving this time is 1. Houston is a crazy place without a storm going on, 2. I can spend time with Bryan if I go to the Hill Country, and 3. as we get older and wiser we tend to be a little more cautious.

The last major Hurricane in Ingleside occured when I was 2 years old, it was Hurricane Celia and although I don't remember it, it had a huge impact on people's lives and the "old timers" still talk about it to this day. So, although I have lived on the coast my entire life, and spent many childhood birthdays (late August) on the road evacuating, I have never been through a hurricane other than Celia when I was two.

As an interesting note, after my Mother passed away I found a clipping from a local newspaper on the week I was born about Tropical Storm Candi - which was in the Gulf of Mexico that week! Although if you ask me, it was my little sister Cathy who should have been named after a storm!

Random Dance Moves

2008-09-07T23:09:00.003-05:00

3001 hits. For everyone who reads, has sent prayers and support and even those who remain anonymous, thank you for your support and taking time to share in our miracle. This wonderful little boy has changed our lives, and at the very least I hope he brings a smile to your day as you read about him. If you have not already, please sign Bryan's guest list at the bottom of the page so we know who you are!

Four more days, and YaYa is coming home! Good news, your Daddy is coming home too and he and Traci have a brand new house with a bedroom just for you. We are going to have so much fun decorating it! YaYa forgot her camera in Grampa's truck, so no pics to post until this weekend.

We are all so proud of you, you are doing so well and becoming so smart. And they way you bust out with random dance moves at the most unexpected times cracks us all up. We know you are getting a little nervous around strangers now, and we feel blessed that you want us when you are nervous or upset. So we have been being a little selfish for your sake, and keeping you all to ourselves so you can be comfortable and be yourself. We were so afraid you would forget about us, but from the look on your face when we roll into town it is apparent that you love us every bit as much as we love you.

Four more days, and we can read books and sing songs and make silly, goofy faces. Until then, Yaya loves you and misses you very, very much. Sweet dreams little man.

YaYa

T-minus One

2008-08-27T21:53:00.002-05:00

Heading home Friday morning to spend 4 wonderful days with Bryan!!!!!!!!! Plenty of pics when I get back, I can't wait to see him. He has been sick, double ear infection, again. He goes to see the ENT on Tuesday. I'm praying they can get his issues resolved soon. I miss him SO much and can't wait to get my arms around him and snuggle up in the bed together and read books.

Keep us, and everyone along the Gulf Coast in your prayers. Hopefully the hurricane will miss us, but we are in the path in both places...Houston and Ingleside.

Hope everyone who is reading this is healthy, happy and loving their families.

Godspeed.

Candi
YaYa to Bryan

Just Pics

2008-08-18T05:48:00.001-05:00

How I Spent My Summer Vacation

2008-08-06T18:53:00.006-05:00

The main reason I have not had time to write lately is that I spent my 3 days off in Ingleside with Bryan! He is awesome, and getting stronger every day. He is learning so much..he is army crawling and really using his arms a lot now. And his hair is growing like crazy - I actually got it cut on Sunday, so it's not so crazy now....but it all looks good on him....because he is always smiling.

I bought a new camera, so I will be posting LOTS of pics for a while and not much text. I added a few pics after Bryan to show you the beautiful beach (one of a few, actually) where I spent 5 fabulous days in California...no phone, no laptop...just my dearest friend, my new camera and time.

Enjoy!

Educate, Educate, Educate

2008-07-23T19:07:00.004-05:00

In regards to Cat's blog:

This is our opportunity to teach, and that is the greatest gift.....besides love, of course. I think for a few of us we are at a threshold where the time that our kids look like most others (but way more cute with all those rolls and chubby little fingers) to a time where they are really different and stand out.

I get it more and more with Bryan. The "look" - something is different, but people just can't seem to put their finger on it. The questions about age, weight, etc. are coming more and more frequently.

I myself used the m word without thinking twice about it BB (before Bryan). I had no idea as I had never been around a person with dwarfism before. In hindsight, I see just how discriminating and damaging it was to categorize people based on the way they look. And I was totally unaware that I was hurting anyone.

I have since come to realize that all differences are no more than eye color, shoe size or DNA. Bryan's Dad, Casey, has been teased his entire life because he is a VERY large person. Our bodies are simply a suitcase for God's plan. We choose to carry it well or let it weigh us down. What's inside is what's important. Bryan has opened my eyes in a way that no amount of sensitivity training, political correctness or preaching ever could.

The path to abolish discrimination and ignorance is not with anger or harsh words. As God has chosen our lives to be enlightened by blessing us with these very special children, we must return the favor by spreading the joy that they bring to us and allowing the world to see that their differences are only physical in nature. I hope that anyone who spends any amount of time with Bryan will see that he is a loving, gentle, kind soul and the size of his body or any label they may have preconceived for him will be replaced with thoughts of a beautiful, happy boy with a smile a mile wide that he shares with everyone he encounters.

Inside of us all is a human being who shares the same basic needs of the rest of the world...to belong, to feel loved, and to carve a path in life that leads to peace within. Because we are all human, we tend to label and categorize, this is simple human nature. When we can open our minds and understand why and how ALL labels are hurtful to someone in some way...then we are truly enlightened to the world God has gifted us.

The next time we become angry because someone has used a word that we find offensive, we should use it as an opportunity to educate, if possible, and also to reflect on our own selves, to remind ourselves to think before we put any kind of label on another, and how that person might feel if they were in earshot of the conversation.

I still encounter people regularly who use the m word. Most always, it is because they do not realize how derogatory it is. I do enlighten them, and I tell them about my beautiful grandson and how I hope he never has to endure discrimination and hurtful words. And I show them a picture of how beautiful, sweet and innocent he is. Then I leave it up to them, and hope somehow I have made a difference in the world.

Thanks Cat - for inspiring me to get my thoughts out of my head and share my experiences.

On the Coast of Somewhere Beautiful....

2008-07-14T23:35:00.008-05:00

Not much time to blog these days, instead I'm back to driving in my free time....but look what's at the end of the journey....

Definitely worthy of a road trip. Good thing I get great gas mileage!

Snips and Snails and Puppy Dog Tails....

2008-07-08T20:41:00.003-05:00

Bryan got a new dog today....his name is CASH.

Aren't they cute????

I miss him so much. He spent a night in the hospital Saturday because his adenoids were so swollen he wasn't breathing well. He is still running a fever, but hopefully the antibiotics will kick in soon. He needs to see the ENT - its time to have his tonsils out apparently.
He was suppose to see the ENT here, but now everything is behind.
Please pray that he will hold out until he get in to get things squared away.

YaYa misses you SugarBear. Hope to see you soon.

We miss you

2008-07-07T23:01:00.003-05:00

Your YaYa is missing you horribly little man. She has some surprises for you. I am off again, to California next weekend, but the moment I get back I am coming to see you. I love you more than you will ever know, and it breaks my heart not seeing your smiling face each day. I hope you are having fun and learning lots of new things. I will see you soon.....and your new puppy!!! I can't to see what you will name him. I'm so excited for you. I love you. I miss you. I hope you can feel us sending all our love your way.

Godspeed, little man.
Sweet dreams SugarBear.

YaYa loves you.

Rudyard Kipling

2008-06-30T21:48:00.006-05:00

IF you can keep your head when all about you

Are losing theirs and blaming it on you,

If you can trust yourself when all men doubt you,

But make allowance for their doubting too;

If you can wait and not be tired by waiting,

Or being lied about, don't deal in lies,

Or being hated, don't give way to hating,

And yet don't look too good, nor talk too wise:

If you can dream - and not make dreams your master;

If you can think - and not make thoughts your aim;

If you can meet with Triumph and Disaster

And treat those two impostors just the same;

If you can bear to hear the truth you've spoken

Twisted by knaves to make a trap for fools,

Or watch the things you gave your life to, broken,

And stoop and build 'em up with worn-out tools:

If you can make one heap of all your winnings

And risk it on one turn of pitch-and-toss,

And lose, and start again at your beginnings

And never breathe a word about your loss;

If you can force your heart and nerve and sinew

To serve your turn long after they are gone,

And so hold on when there is nothing in you

Except the Will which says to them: 'Hold on!'

If you can talk with crowds and keep your virtue,'

Or walk with Kings - nor lose the common touch,

if neither foes nor loving friends can hurt you,

If all men count with you, but none too much;

If you can fill the unforgiving minute

With sixty seconds' worth of distance run,

Yours is the Earth and everything that's in it,

And - which is more - you'll be a Man, my son!

Missing you...

2008-06-26T21:39:00.002-05:00

I hope you had a great day today, filled with love and attention.

Today YaYa read all about the boys and girls you will know as you grow up and their experiences at the LPA National Conference. After reading about their time there, I really wish we could have gone. It would have been really nice to take you this year, and if your medical issues had not improved we definitely would have made it. You are so fortunate that all the people that love you bought you a lifetime membership so that you will always be able to be a part of something so special and unique. We have great friends and family - always remember that.

YaYa will be making plans soon to attend next year. Her very good friend Shelly lives in Maryland and hopefully will ride the train down with her boys to meet us in New York. You will love them, they are an awesome family. It is going to be a great time for us.

And I am so excited for you to meet all the kids you will be able to relate to as you are growing up. And most especially the boys you are so close in age to - Knoah, Owen, Cole, Preston - and who knows some day you may even take Kaela or Leah to your prom! o.k., I will stop with the embarassment now - after all I'm not a Grandmother, I'm a YaYa - way cooler.

We all love you and miss you and hope we get to see you soon. Sweet dreams tonight SugarBear and have a GREAT day tomorrow.

I love you.
YaYa

Ooooooh, it's dark and spooky.....

2008-06-25T22:24:00.003-05:00

I hear I missed your phone call - but while YaYa was working today and wondering what you were doing and how you are - a great idea came to her! Web cams. They are on their way, so soon I can see your face light up when you hear me!

Have you figured out how the light switch works yet? A thousand more times and we would have had the hang of it. You make YaYa realize how intriguing the simplest things can be. Can't wait to see you so we can play "oooooh, it's dark" again.

YaYa loves you, and misses you dearly. It's just not the same here without you. I hope you are having fun and getting to spend lots of time with your family. They are important and will always be there for you - you are a very lucky little boy - and we are a very lucky family that God chose us to receive such a special gift. Do you know that you are the glue that holds us all together? Some day when you are big I will tell you the story of how you changed our lives.

Good nite SugarBear. Sweet dreams and Godspeed.

I love you.
YaYa

Newcomer

2008-06-23T21:55:00.003-05:00

Hello Martha - you can contact me via candiogirl@yahoo.com - I would love to hear more about your beautiful daughter. Please see the links via my blog and comments - these are the most wonderful people you could ever meet - It is hard to describe how much they have enriched my life and how much they have helped me deal with Bryan's medical issues.

Quiet and Empty

2008-06-23T19:57:00.002-05:00

The house is quiet, empty. No toys scattered about the floor - no big smile to brighten our day. Even the kitty has let down her guard, resting lazily in your spot. We miss you, and wonder how your day was. Did you do anything new? Are you wondering where we are? I hope you are having a good day and charming everyone along the way - the thing you do so well. I love you.

YaYa

2008-06-21T22:42:00.002-05:00

YaYa is missing you....we love you - YaYa, Grampa and Auntie Shelby.

Who

2008-06-19T21:03:00.004-05:00

Who will cut your fingernails?

And let you pet the kitty's tail?

Who will read "On the Night You Were Born"?

And let you honk their nose like a horn?

Who will sing Itsy Bitsy Spider?

and YaYa's gonna buy you a Mockingbird?

YaYa will SugarBear,

just look in your heart, and I'll be there.

I love you sweet, precious Bryan, and I miss you already.

But I'm so glad you will be spending more time with your Daddy.

I love you SugarBear.

I will see you very, very soon.

YaYa

Gone

2008-06-19T18:13:00.003-05:00

Brandy and Bryan are gone. She doesn't want to live with us anymore, so she has taken Bryan and left. I hope she finds what she's looking for.

My heart is breaking. Our house is empty. What will I do without him to greet me every day when I come home.

Life in the Country

2008-06-04T20:25:00.011-05:00

Hi everyone. Bryan's YaYa has been INCREDIBLY busy these days. Working looooooooong days, into the night most nights. And trying to spend some time with my long lost friends and reconnect with my hubby. Not much time left for blogging!

It has been a very stressful year, and I have lost touch with so many of my dear friends due to time contraints, the move, hospital visits, etc...so besides work, I am focusing on getting some "me" time back. So if you don't hear from me, just know we are still checking "our" kiddos all the time...they all look to be doing just great!

Bryan is awesome. He amazes me every day, he always has a smile. I mean ALWAYS. And he is learning so much, he studies anything and everything that has moveable parts over and over again. I say every day he is going to grow up to be a great mechanical engineer. I can see it already!

A quick update:
9 days short of 15 months
Weight: 18 lbs.
Height: 27 3/4"

Bryan is not sitting up on his own yet, but is trying to crawl...more of an army crawl, really. This past week, he has discovered his voice. He babbles constantly, and I think he even gripes a little. He is spending more and more time in his Bumbo and he rolls everywhere. The biggest issue with him is keeping him from being bored!

Bryan went to his Great Great Grandparents ranch to see his Great Great Grannie Beck and Great Granny and Grandad on Memorial Day weekend with his Dad and Traci - so I am putting a few pics up of his trip. Casey says he didn't think too much of the cows, I'm sure his Grandad was not glad to hear that as they are his pets!

On another note, to all of those of you that live in the Northern Hemisphere, it is HOT here in Texas...Katie, I'm sure you can concur! I went to Midland to see Bryan's cousin J.C. graduate and at 4:00 in the afternoon it was 105 degrees. That is actual temperature!!!

Me and my Great Great Grannie Beck - There are 3 generations between us, that makes five!

4 of the 5 Generations, too bad Grandpa wasn't here.

Me and my Great Grannie Beck-the Cedar Chopper! She makes a mean chocolate cake too!

Kickin' it in the pasture, just me and my Dad.

No more Operators! This kids gonna be an Engineer!

Kicking it with Great Grandad!

We learn to drive early in our Family - its a tradition!

Time to feed the cows! You work the pedals Grandad, I'll do the steering!

Do I get to drive again now Dad?

City comes to the Country....

Not too sure about her, can you blame me? Her tongue weighs more than me!

And she slobbers more too!

Every day should end this way. Life is good out in the country!

Auntie Shelby's Sweetie Pie Cuppycake

2008-05-07T20:03:00.005-05:00

You're my Honeybunch,

Sugarplum
Pumpy-umpy-umpkin,

You're my Sweetie Pie
You're my Cuppycake,

Gumdrop
Snoogums-Boogums,

You're the Apple of my Eye

And I love you so and I want you to know
That I'll always be right here

And I love to sing sweet songs to you
Because you are so dear

From your Auntie Shelby!!!

We are so glad to have you home!!!

Now if we can just get your Mom to change the date on the camera!!!

Missing Them

2008-04-27T14:52:00.003-05:00

Brandy and Bryan are gone for the weekend, they went home to Ingleside so Bryan could spend some much needed time with his Dad, which I am so grateful for. However, I miss them tremendously. Bryan absolutely is the highlight of my day, and Brandy has become a friend and confidant to me, as well as my daughter. I'll be glad when they are back home.

God's Will

2008-04-21T18:04:00.003-05:00

Martina McBride - God's Will

If you are like me, you have spent your fair share of time trying to "find" God's will, as if God is playing a game of cosmic hide-and-seek with us. We plan and search and agonize - hoping that by our detailed plans, we will suddenly discover the hidden blueprint that explains the meaning of our lives .

I have had a few people in my life tell me they found God's will when they least expected it...or when they least expected Him to be there. Now I know for sure, we don't "find" God's will. It "finds" us.

Since Bryan has entered my life, even before he entered this world, I have said many times to my close family and friends that I feel as though God's hand has been guiding me through this journey, more so now than ever before. He has always found just the right people to place in our lives at just the right time and some of the turns of events simply cannot be explained away as "coincidence".

I suppose all of us can look back at the major turning points of life and see how a pattern of events just "happened" in a certain way that led us in a certain direction. My life often turns on small decisions and unexpected events and certainly if everything I had planned had gone accordingly, I would not be where I am today or who I am today. Heartbreak that forces you to change your life's path, a chance meeting that produces someone you can't imagine your life without, a friend we “happened” to meet at a new job, a life changing event when we thought we had just figured out our life's path for the future, a fragment of a remembered recurring dream. It happens all the time. For all our obsessing about "finding" God's will, when we look back, we see that God's will found us first.

So pay attention the next time someone knocks on your door or comes into your life unexpectedly. It might be God's Will.

I met God's Will on a Halloween night
He was dressed as a bag of leaves
It hid the braces on his legs at first
His smile was as bright as the August sun
When he looked at me
As he struggled down the driveway, it almost
Made me hurt
Will don't walk too good
Will don't talk too good
He won't do the things that the other kids do,
In our neighborhood

I've been searchin', wonderin', thinkin'
Lost and lookin' all my life
I've been wounded, jaded, loved and hated
I've wrestled wrong and right
He was a boy without a father
And his mother's miracle
I've been readin', writin', prayin', fightin'
I guess I would be still
Yeah, that was untilI knew God's Will

Will's mom had to work two jobs
We'd watch him when she had to work late
And we'd all laugh like I hadn't laughed
Since I don't know when
Hey Jude was his favorite song
At dinner he'd ask to pray
And then he'd pray for everybody in the world but him

Before they moved to California
His mother said, they didn't think he'd live
And she said each day that I have him, well it's justanother gift
And I never got to tell her, that the boy
Showed me the truth
In crayon red, on notebook paper, he'd written
Me and God love you
I've been searchin', prayin', wounded, jaded
I guess I would be still
Yeah that was until...I met God's Will on a Halloween night
He was dressed as a bag of leaves

Laissez les bon temps roule!

2008-04-11T10:07:00.003-05:00

They call him the Crawfish Kid....badder than Billy, with a much better gun.

Last Saturday Bryan attended his crawfish boil! We had so much fun, THANKS Sharon and Jimmy! YaYa and Brandy ate crawfish til they couldn't eat anymore, and for those of you who are wondering....No, Bryan did not suck the head. :0)

He did have fun playing with mudbugs though. I hope Brandy checked his pockets before she put his laundry in the hamper. :0) He also got a turn in the moonjump with Brandy. Fun, fun, fun!

Hair Today - Gone Tomorrow, Friends 'Til The End, Personality and You Should See The Other Guy

2008-04-06T13:29:00.009-05:00

HAIR TODAY....GONE TOMORROW

FRIENDS 'TIL THE END...

PERSONALITY......

You Should See the Other Guy!!!

Prayers for Families

2008-04-03T03:38:00.004-05:00

Please pray for Tricia, Nate and Gwyneth. Tricia has CF, she and Nate are new parents with a baby still in NICU, and she is undergoing a double lung transplant right now. Their story is incredible - and they give me strength. I will warn you - reading their blog can be quite addictive.

Also, Please pray for Seve and her family. Seve is currently pregnant with twin boys, and contacted Cat for support after learning that one of the boys, Caleb, is showing signs of dwarfism in eutero. Just like Brandy, Cat, and so many other parents - Seve and her family are being told that Caleb's outlook is bleak. Please keep them in your prayers. I am praying that above all God brings peace to their family and understanding that every life has a purpose.

Godspeed.

10 Random Facts about Bryan's YaYa

2008-03-31T20:06:00.005-05:00

Courtesy of Renay, my mind captured the 1st 10 random facts I could think of about myself.... This was fun! I'm hoping to learn more about everyone by doing this.

1. I married my husband 10 days after my 16th birthday, we have been together 25 years. And no one in my family was a coal miner. :0)

2. I spend entirely too much time on the internet and am now using an accupressure method to break the habit. (Yes, Jennifer, I too am a blogaholic. The first step is to admit you have a problem!)

3. I have a super great collection of Wizard of Oz memorabilia.

4. I would rather be on the water on a sunny day than anywhere else - swimming, sunbathing, fishing, whatever - so long as it is on the water. I miss home, where my favorite spot is a pool on the edge of the bay leading to the Gulf of Mexico. I really need a trip home.

5. I hate the city and dream of the day I no longer have to live here.

6. 30 minutes before the sun sets is my favorite time of the day, and I love to be outdoors during that time (preferably on the water!)

7. My grandson changed my life in many ways, some of which are still difficult for me to verbalize without crying. But there is plenty about him I can tell you without crying! Just ask!

8. If I had to change careers today, I would enroll in nursing school and specialize in NICU.

9. I love to cook and have always wanted to attend classes to be a Pastry Chef. Maybe some day I will leave the corporate world, move to the mountains and open a pastry shop! (Oh, and I love sweets too - I could live on sweets alone for the rest of my life). I hope Bryan has a love for cooking like his Dad does. He's a Hill, so I'm pretty sure cooking and eating will come naturally to him.

10. I can attribute my success to the true southern Steel Magnolias in my life. Gretchen, Aunt Mary, Nana, Cat to name a few - but more than anyone I admire strong southern women who take care of their families...and their cast iron skillets! If you have ever read Girls Raised In The South, you will feel like you know me already. I really want Bryan to know what makes these women strong, and become their counterpart...a true southern gentleman.

On another note, here's Bryan's Easter pictures....we went to church with Vanessa and her family and then came home to dye and hunt eggs. Bryan did most of the work, but Brandy helped! Then YaYa cooked ham, potato salad, baked beans and of course deviled eggs! (see what I mean about the Hill / eating thing?)

Bryan Turns One!

2008-03-28T23:36:00.001-05:00

Procrastination

2008-03-28T00:31:00.004-05:00

So, here it is. There is so much work to do to get this thing up and running, but if I wait until I have it exactly the way I want it, it will never be published. Kudos to Tonya, Cat, Katie, Renay, Evelyn, Kim, The Dungey's and Candi for inspiration and drive to finally do this. You have all become an every day part of my world. And I'm hoping someday Bryan's world as well. Thank you so much for all you have done for me, Bryan and Brandy. God works in mysterious ways, and I thank him every day for opening the door and allowing me to witness the beauty of life through Bryan's eyes. More to come....

In the Beginning

2008-03-12T17:30:00.002-05:00

We sat with the geneticist on Feb. 16th and listened as he told us Brandy's baby definitely had some type of dwarfism (we knew something was wrong in December) and that they did not think his chest size would be compatable with life. Sitting with Brandy through that conversation was the hardest thing I've ever done in my life. I tried to contain my tears and be the strong one while I was with her. But I remember after leaving her at home, being in a daze the remainder of the day. I went to my best friends house and cried into the night. And there was a lot of crying for the next month.

My how things have changed. It has been a long hard road, but I believe God has a plan for Bryan, I believed that all along. He has already changed my life tremendously. God and Bryan, that is.