With February comes so many things...Heart Month, Turner Syndrome Awareness Month, the beginning of baseball season, the Blair E. Batson Radiothon, and last but not least, the precious anniversary of Avery's life-saving surgery in New York City. I've tried to start small traditions that I hope will continue to grow with the kids as they grow each year. I've also tried my best to raise awareness for the two things (CHD and TS) that have completely impacted our lives. Avery loves to color and paint these days, so we decorated the house with hearts and butterflies and counted down to Valentine's Day which is also during CHD Awareness Week!
Mrs. Linda made Avery some awesome shirts to wear to spread awareness this year!
We gave one of the pictures below to both Avery's cardiologist, Dr. Ebeid and Avery's New York surgeon, Dr. Bacha. Since Avery is bigger now, she was able to do some fingerprint hearts on a card for both of them AND sign her own name. We framed Dr. Ebeid's picture and sent his yearly Cups coffee card to him along with a little happy for Nurse Regan. Who knew a man like him would appreciate a few free cups of coffee as much as he does! We've established such wonderful relationships with Avery's doctors, and we truly appreciate them more than they could ever know.
We had a little fun with some pictures too. Don't think Mommy didn't love putting all of those kisses all over Bryce!
Avery adores Despicable Me with Gru and his minions. When I saw these Valentines on Pinterest, I knew they would be perfect for her to take to her class. She loved them and was extremely excited to take them to her friends! Bryce took apple sauce squeezes that said, "You're My Main Squeeze", and we sent "Spread Love Not Germs" tags attached to hand soap with CHH charms to their teachers.
Mommy's and Daddy's Valentines
We made "Sweetheart Floats"
We did something special this year for the Blair E. Batson Radiothon. They called to set up a date last summer for a radio vignette, and it was played on all the area stations throughout the days of the radiothon. It was a cool experience, and while I haven't heard it yet, lots of people have told me they "heard us on the radio." It was special to us because Jake was able to come (since it was done over the summer and not during the season) and Avery spoke in it saying, "Thank you." During the live radiothon this year, Grammy came to help Mommy again, and I was able to speak on a few stations to share our story and hospital experience to raise money for the place we hold dear. Avery steered clear of the DJs and microphones this time around, but she and Bryce had fun playing in the lobby. In three days, the hospital raised over $400.000 dollars! I have seen first hand what some of that money can do, so I am very happy to see such a big number. According to the people who travel and put on these radiothons, ours is bigger and better than the likes of NYC and L.A.! On the agenda is a new wing which will house everything cardiology. This means SO much to our state!
We wore red for our heart hero, Avery, and all of the other survivors and angels of CHD!
One of the sweetest people I know, Kristen Warren, made this special necklace for me this year. I had a copy of an EKG from Avery's medical records, and Kristen was able to take one of the patterns to create it. It is so beautiful and special to me!
Mrs. Linda Turner and her husband, Jimmy, have known me pretty much all of my life. We got this letter in the mail this month, and it made me cry. They donated to Batson in honor of Avery. Avery's birth and life have shown me so many extraordinary things, but one of the biggest and best is the compassionate love that we have been shown from others.
Speaking of compassion and love, my school, Pearl Upper Elementary, continued its "Wear Red Day" that began after I began this ministry a few years ago. Our students were able to donate $1 to wear jeans and a red shirt the last Friday of February, and our teachers donated $5 to wear jeans all week long. The money has funded our heart pillow ministry for the past 3 years now, and it has truly blessed my heart. On top of that money has been donated directly to Blair E. Batson during the radiothon. We are able to spread awareness and teach the life-long lesson of compassion for others and generosity. The funny thing is, the kids usually don't need a lesson in generosity...they have huge hearts. They want to help others, and they always want to "help" Avery and kids like her. I have one of the most precious groups of students this year. While things have been tough for me, they have made me smile and laugh and remember why I teach!
Below is a picture of some of them with my amazing pod-mate, Amanda Porter.
I also used Facebook (as usual) to spread awareness again this year! Here are the posts and pictures from that...
TS Facts:
It is estimated that only about 1% of fetuses with only one X chromosome survive to term and that approximately 10% of all miscarriages are due to Turner syndrome. There is no known cause of TS. Maternal age does not affect TS.
The most common features include short stature and gonadal dysgenesis, although many organ systems and tissues may also be affected to a lesser or greater degree.
The average adult height of a woman with Turner syndrome is 4’8”; however, growth hormone therapy can increase final adult height.
Gonadal dysgensis can cause incomplete sexual development and ovarian failure and infertility.
Other symptoms/characteristics of Turner syndrome:
Congenital heart defects
Renal abnormalies
Hypertension
Conductive and sensorineural hearing loss
Mild malformation of outer ear and low set ears
Speech problems
Strabismus, amblyopia and ptosis
Dental abnormalities (narrow, high arched palate)
Obesity
Lymphedema (webbed neck, edema of hands and feet)
Nonverbal, visual-spatial processing learning disabilities
It is estimated that only about 1% of fetuses with only one X chromosome survive to term and that approximately 10% of all miscarriages are due to Turner syndrome. There is no known cause of TS. Maternal age does not affect TS.
The most common features include short stature and gonadal dysgenesis, although many organ systems and tissues may also be affected to a lesser or greater degree.
The average adult height of a woman with Turner syndrome is 4’8”; however, growth hormone therapy can increase final adult height.
Gonadal dysgensis can cause incomplete sexual development and ovarian failure and infertility.
Other symptoms/characteristics of Turner syndrome:
Congenital heart defects
Renal abnormalies
Hypertension
Conductive and sensorineural hearing loss
Mild malformation of outer ear and low set ears
Speech problems
Strabismus, amblyopia and ptosis
Dental abnormalities (narrow, high arched palate)
Obesity
Lymphedema (webbed neck, edema of hands and feet)
Nonverbal, visual-spatial processing learning disabilities
Keep Calm she's a Turner Syndrome princess! She's 1 in 2000, but she's 1 in a million to us.
TBT Our little butterfly...she may have Turner Syndrome, but it will never define her. She has quirks, just like other kids, but she is very social and all of her teachers and classmates love her. Avery needs a little more time to "get" things, but she always does. She can do anything she sets her mind to- that is a fact!#TSAwareness
4 years ago today...Pre-op at Children's Hospital New York...heart not working well...very sick...didn't know how bad it really was....God's grace...an excellent proactive cardiologist...it could happen to anyone...it happened to us #chdawareness #survivor
4 years ago today...snowstorm big enough to cancel school in NYC...we made it...and so did the surgeon....was supposed to take 3-4 hours...it took over 6...no word from anyone the entire time...but Dr. Bacha came out with a Diet Coke and a smile...God saved her...her chest was open overnight...We saw her heart beating...Amazing.
4 years ago today...PICS room with a view...sleeping in a window...ups and downs post-surgery but doing ok....began taking a bottle but had some issues so had to stop...medicated for pain...on the vent...imagining the cords and tubes coming off one by one...ready to skip ahead a few days...wish I could explain all the critical moments that God showed up...he answered some prayers instantaneously. #CHDAwareness#survivor
Things went from good to bad to worse to great...huge knot on the back of her head from portable xray....air in her lungs trying to put us back in PICU...formula in her chest tubes..pain coming off of meds...but then...she began to smile again...it didn't take long really...two days after we were threatened with going back to picu she was discharged...that particular smile? Her cousin, Cooper, was born that day! #CHDAwareness #1in100#survivor
Before we knew it...she was acting like a normal, happy baby again....we stayed in a hotel...had a positive post-op appointment....her new pulmonary valve was (and still is) leaking but that is normal apparently...then we flew home to begin Avery's next chance at life..God helped us overcome the odds once again.
I've wondered almost every day of her life why?...not why did "this" happen to us....but why did she make it when others don't?..how is she able to do things so many others can't?....I have no idea...but I know that God does.
#Hisplansnotours #CHDAwareness #Survivor#shesanovercomer
I've wondered almost every day of her life why?...not why did "this" happen to us....but why did she make it when others don't?..how is she able to do things so many others can't?....I have no idea...but I know that God does.
#Hisplansnotours #CHDAwareness #Survivor#shesanovercomer
And she grew...not too big but she grew...she turned one...then two...then three...then four...and in a few months...she'll be FIVE!...people always ask me how she's doing...she's doing really well...really well for her isn't quite like it is for all kids...with the last surgery we traded two defects in for three bc her heart works better that way...she has another person's valve in her body and it leaks...her heart is still handling it well.....when it doesn't anymore....she'll have open heart surgery again to replace it....throughout her life...she'll need visits to the cath lab to keep her arch (repaired in her first surgery) from narrowing....then there's having TS...growth issues with daily shots...thyroid issues with daily meds....kidney issues with daily meds....the possibility of some cognitive issues...some speech issues...that's just reality....and it is scary....however....she's HERE...she's been around 5 years longer than she was "supposed" to be....she's come so far and surpassed expectations... she's amazing....most days are our kind of normal....and the most beautiful part....God is in full control and advises me not to worry!
February is American Heart Month and Turner Syndrome Awareness Month. Love this little miracle girl! She has already done great things, and I can't wait to see what else she has in store for us. You can't have bravery without Avery!!! — with Megan Beauman Bell.
Avery and I have both been blessed on this journey in meeting some pretty amazing people (ESP kids). Sydney Mead and Caroline Puckett are two of those people. They look so incredibly sweet together and thinking of what the picture of them together represents....all that strength, perseverance, and faithfulness, not to mention answered prayers and breathtaking miracle moments captured in one picture...there are no words! These girls were asked to do an advertisement with the Sweet Potato Queen for the Batson Zippety Doo-Dah Parade. They looked so sweet that Syd's mom, Brandi, got them together again for some adorable pictures for Heart Month.
The weather has been so crazy this year! We have thankfully had a few nice days to get out of the house, but with Avery and Bryce (literally) being sick on a weekly basis, we didn't get out nearly enough.
.jpg)
Avery Loo-Hoo
In true super-hero form, Avery brought our very sick neighbor, Mr. Hyde, and his wife some Valentines to brighten there day. Mr. Hyde is an amazing, Christian man that we met when we moved into our house a couple of years ago. He always has a smile and a kind word, and he always sets an example of what a man of Christ should look like. Jake has helped him out around his house several times, and he is just the sweetest little old man you could ever meet. I continue to pray for peace and comfort for him and his family, and I know seeing Avery every now and then makes them smile.
We've had our fair share of doctor's appointments lately. They thought Avery had the flu at one point, but because her white blood cell count was up, they settled on an infection with antibiotics and the occasional breathing treatment. I think she still shocks everyone in the pediatrician's office when she comes in saying "hello" without kicking and screaming the entire time! I am definitely relieved those days are gone for the most part (at least the parts where no one is messing with her lol). Avery has several appointments in the next few months, so we are hoping that everything is working as perfectly as it seems to be. We have our daily fears, but that is the reality of life. I try to stay focused on the here and now as hard as it is for me sometimes. I also try to remind myself daily of what I am thankful for and praise the good Lord for it all.
People have said that kids settle down and you don't have to chase them as much at this age; however, I don't think that is true in our case. Avery is still a total mess! She loves getting in to everything, doesn't really care about punishments, and will drive you crazy when she really wants something! She is as strong as an ox and as tough as nails! While she is in dance this year (and loves it as you can see from my YouTube posts), Jake really wants to put her in gymnastics soon. You can see below how she gets onto the counter top! She has the funniest quirks and a huge personality! Her smile still brightens up any room or anyone's day. Her crazy, red hair is out of control these days, but it is terribly beautiful. I am in awe of her spirit. She just inspires me to be tougher than I ever I thought I could be. She is still having trouble focusing at school, but when she really tries, she does a great job. We are going to keep her in K4 one more year just to let her catch up to where she needs to be. I know that every worry and fear I have will be overcome because I live with the biggest "overcomer" I have ever met on a daily basis!
.JPG)
"Avery-isms"
Daddy's Fave (not): "Nanny nanny boo boo!"
"blah" "grr"- I am not even sure what it is is...some kind of weird and goofy noise she makes from time to time being silly.
"Don't worry 'bout me, Mommy"
"Yes, I is"
"Put you nose on the wall, Bryce, you in time-out!"
"Bryce has my toy, I want it!"
"Bryce hit me!"
Mommy's Fave (not): "Nuh-uh!"
If I haven't mentioned it before: "You getting on my nerviss!"
Avery's Fave (seriously): "What we doin' today (or tomorrow)?
Angie, Avery's speech therapist, also sent me a text that made me cry this month. It was a recording of Avery working on the initial "y" sound during therapy. Avery said, "I LOVE YOU" as clear as day...the best I'd ever heard it. Then, she ran around the room and did a little happy dance. It surely made my day...my week!
Yes, she is a handful (a handful that is finally around 32 pounds at almost 5), but she is a great big sister (most of the time), she still gives the biggest and best hugs, and she makes life happy!
Bryce-Man
Oh, buddy! Poor little Bryce has been through it for a while now between his ears, having colds, and teething. Avery has such a high pain tolerance that we really didn't even realize she was teething much at all aside from drooling and chewing on things. Bryce has been cutting molars by twos. His ears have stayed badly infected, so after many, many trips to the doctor and a 3 round shot of Rocephin, the kid finally got tubes placed in his ears. I feel confident he will do really well with this behind him. I am sure his hearing has improved a great deal and look for him to begin talking a lot more. He did really well by going back smiling. He didn't get sick from anesthesia like Avery did, and he slept it all off waking up good as new.
Even though he's been sick a lot, he has still been such a sweet and happy boy. He's gotten scratched (see pic) and bitten at school some since he's moved into his "big boy" class. Bless his heart, he's the low man on the totem pole because he's the youngest! Now that he's walking, I am sure he will hold his own much better!
Bryce loves getting into the cabinets and dishwasher. He'd rather do that than play with his toys. He still loves his "ba-ba", but he only gets it at home now. I will tackle getting rid of it this summer. He's felt so bad, and it gives him comfort. I just haven't wanted to take it away just yet. He is making a "mmm-ah" sound when he gives me kisses now, and he babbles quite a bit. It didn't take him long at all to get the hang of walking. He is able to push up from the floor, and he keeps his balance very well. He can climb up steps. and he is also beginning to pick up and throw balls. He thinks Avery is the funniest comedian on the planet, he almost always wants his momma, and his favorite words is still..."Dada". Dada is a lot of fun after all. He likes to play "get the hat on Bryce" while BB is in his baby bed. He even makes it sometimes. Bryce can be quite the sensitive little fella. He has a fake cry down pat, and uses it to make Mommy feel bad when she tells him "no". He also just lays flat on his belly and puts his head down (see below) sometimes. Bryce also hands me things when I say "Ta-Ta" (thank you) and smiles. He just looks so stinking sweet and cute all the time. I am in trouble! Bryce is about 25 pounds now, and his hair grows so fast, his GG can't cut it enough! SO many people stop to smile at and talk to Bryce when we are out and about. He just makes people grin, and who can deny those big, blue eyes? His ENT also said he is such a "pleasant" little guy.
.JPG)
Life isn't always a a piece of cake, but the people in it make it worth every trial and pain. God is always good, and he's given me some pretty amazing friends and family to lift me up when I am down. Every day is a day to give thanks, and my heart overflows with gratitude to the One who has given me every good (and perfect) thing I have. Daddy is most definitely included in those "good" and "perfect" things, he just isn't in the pictures due to (what else?) baseball season! He is my rock and my sanity!
James 1:17 Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.
No comments:
Post a Comment