Friday, December 30, 2011

Ben Breedlove

I know many people that read my blog posts have seen the videos that Ben made and posted just a week before he died.  Ben had a heart defect...not the same as Hope, but just as severe (and at times much more severe).  He posted cards about his life and how he cheated death.  He posted cards about the limits his heart defect had on his life.  He seemed like he lived a great life and from his video, he seemed happy.  It warmed my heart watching his videos.  It made me thankful for the many people that share their heart stories and lives...there is so much inspiration and hope for the future.  I did cry, but they were tears of appreciation and also knowing that his life was way too short.  I imagine the dreams that went unfulfilled, but I also know that because of his heart defect, he lived his life to the fullest.  I am proud that he shared his story and grateful for his bravery and his life.  He is my hero!

Monday, December 26, 2011

A Wonderful Christmas

We all had a great Christmas this year.  It was filled with family, friends, fun, and food...all the things I love!  I don't have a lot to say, other than I hope everyone had a Merry Christmas and has a Happy New Year.  Onto the pictures.
First dress of the day...we had family time at my sister's and then headed to Jerry's parents in the evening.
My cute, funny little man...Paul
Jerry...the laid back little man.
Destiny looking beautiful as always.
My little dress-up queen!

Sunday, December 18, 2011

Toddler Years by Stephanie Husted


Latest news
(Now this is good)
My child's entered
Toddlerhood!

Nothing's sacred anymore
Clear the tables
Clean the floor.

Screaming...seems to be the way
To get my attention
"Hey mom wanna play"?

Feeding time 101
Oh how I try
To make it fun!

Pudding,yogurt,applesauce
The same fate always
Taste then toss!

I'd rather play
With silverware
Now let me out
Of this highchair!

The temper tantrums have begun
And let me tell you
They're no fun.

Naptime doesn't find it's way
Into our house
She'd rather play

With everything
(except her toys)
Toddlerhood
Sure has it's joys.

~Stephanie Husted

Wednesday, December 14, 2011

9.55 - Slow and Steady

For the non-kilo people that is 21 pounds .866 ounces.  In two weeks she has gained over 5 ounces...slowing down a little, but still a gain.  She is over 21 pounds and I am thrilled that she is now OVER 20 pounds.  It has taken so long to get here and even though it is hard, we know that she is gaining and it makes all the work that much better.

In a bit of related news, we found out that Dr. Mavroudis (Hope's surgeon) is no longer working at the Cleveland Clinic Children's Hospital.  He has always been our hero.  He saved Hope's life and held her heart in his hands.  He is an amazing man and it was always my thought that he would be the one to do all of her surgeries.  It never crossed my mind that he might not be there for her Fontan.  It is very scary for me to think about someone else holding her heart in their hands.  I know we still have many months (hopefully over a year) to worry about her Fontan, but I can't help but worry (it is in my nature).

Enough of that...everything else around here is going great.  I have hardly started Christmas shopping, but I am hoping to get in a good day of shopping this weekend. 

Thursday, December 8, 2011

Happy Birthday to my Hubby

Jerry's 35th Birthday is today!  He is the best husband ever.  I know I don't tell him that enough, but he really is a great husband and dad.  He has been my rock for the past 6 years...especially the last three when we were expecting Hope and since she was born.  We have been through a lot as a couple and have grown stronger and closer through it all.  We have had bumps...just like most other couples, but we go over or around them when they pop up in the road.  I have seen my husband laugh louder and cry harder than any other person. 

Happy Birthday Sweetheart!

Sunday, December 4, 2011

Pepsi Christmas Party

My husband works for an amazing company and every year they have a wonderful Breakfast with Santa for the families of the employees.  They have a pancake breakfast, tours of the plant, family pictures, visits with Santa, raffles for great prizes, and presents for the whole family.  We go every year they have it and have a great time.  So many people take it for granted when their companies do things for their employees and it really is a shame.  I think it is great that Pepsi plans this event every year and I know we appreciate going and taking our family.

Wednesday, November 30, 2011

9.40 - Another Gain

I am happy to report that Hope has gained more weight.  I plan to document it every two weeks because then I remember this time and Hope will see how great she did when she gets old.  For anyone that does not do kilograms (haha...I know my heart friends all know about kilograms), Hope weighs 20 pounds 11.57 ounces.  Two weeks ago she weighed 9.15 kilos or 20 pounds 2.75 ounces.  That is a great weight gain!
A lot of the kids playing with legos on Thanksgiving.  There are a whole lot more kids in the family.

We had a great Thanksgiving this year and enjoyed spending time with family.  We made dinner at our house that included a Tur-Duc-Hen...which is a de-boned chicken stuffed in a de-boned duck stuffed in a de-boned turkey.  It was our first year trying it and it was really good.  I got it from The Cajun Grocer and they do a great job of creating and stuffing it.  We also had a turkey and a ham...for our less daring relatives.  Everyone brought great food for sharing and we were all stuffed at the end of the night.
My Grandma (87) and Hope.
Swimming at the hotel (a rare picture of myself)

Jerry had to work on Friday and when he got off work we all packed into the car for a long drive to Kentucky to see my dad and his family.  My grandparents are 92 and 87 and they have never met Hope.  I wanted them to meet her, but I sure did not enjoy the drive.  Over 8 hours each way with 4 kids in the car is NOT fun.  I really tried, but about the millionth time I was asked if we were there yet...ughhh...I had reached my limit.  Oh well...it's not like we do it all the time.  It was the first real trip we have made since Hope was born, so I guess I can go another 2 years before we make another long trip.

Tuesday, November 22, 2011

Funny Faces

I just had to share the picture-taking fun we had the other day.  My kids are the funniest and I love them so much.  They make me laugh so much and I can't believe how much entertainment we can have with just a camera.

We are all looking forward to Thanksgiving and I plan to spend some time working on a blog about everything I have to be thankful for.  We are traveling this weekend (after a huge feast on Thursday), so I may not be able to write until next week.


I hope everyone has a blessed Thanksgiving and remembers what the holiday is for...remembering to be thankful for everything you have in life.

Thursday, November 17, 2011

9.15 kg = OVER 20 POUNDS!!!

Yeah...that is the best word to describe how Hope's weigh in went this morning. She did amazing...no throwing up this time and I know everyone was thrilled about that!  Yes, my little sweetie loves to throw up on any and all medical personnel...no exceptions.

Later in the day we had a Nephrology appointment.  This is to check on her kidneys...which seem to be doing what they are supposed to do.  Her bloodwork has not changed and that is great news.  We only have to do an ultrasound once a year now and that is wonderful news.  We still have to come back every 3 months to visit with the nurses and spend the day downtown, but I am happy with that plan.

In other news...my oldest son, Jerry, turned 6 on 11/11/11.  He is getting so big and is such a great kid.  We went to his parent teacher conference last night and his teacher just loves him.  He is very quiet, but also very polite and really nice.  He is learning so much this year and is starting to read...amazing.

Saturday, October 29, 2011

Two Years Ago

Going home two years ago!

Today!!!

Hope came home for the first time!  I remember the day so well.  We got home really late at night because there was just so much to do before we were allowed to leave.  The home health company was at the house when we got home and made sure the stuff was set up for her NG feedings.  The boys were so excited to see Hope and loved that we were finally all home.  We had everything ready for her...she slept in the same bassinet the boys did when they were babies.  She had a brand new swing from her grandparents and we knew she would be much happier...and we were right.  She was like a totally different baby at home.  She slept through the night and it amazed the whole house.  I, of course, slept very little.  I kept getting up to check and make sure she was doing fine.  I still do that...even with the boys I did it for a long time.  I think it is a habit and I still check on the boys before I go to sleep. 

There are so many wonderful thoughts and that day and every day since...we are a family!  It didn't seem like it when Hope was in the hospital.  The boys weren't allowed to visit much because it was flu season.  I spent all day and most evenings at the hospital.  I would come home to sleep and work out the plan for the day to see who would watch the boys while I was at the hospital.  Jerry went back to work because I had maternity leave and we didn't need to worry about my salary, but we needed him to work.  It was hard, but it was so worth every second.  My mom took off work and was able to keep the boys most of the time.  Everyone in our families stepped up to help out...they are amazing and if they are reading this...THANK YOU AGAIN!!!

Hope has been home for every single holiday.  She came home right before Halloween and this will be the third Halloween that she has spent trick-or-treating.  Of course, the first one we didn't really do anything with her, but we did take the boys out because we didn't want them to miss out.  This year we will be heading out today...bundled up really warm because it is really cold here.  I know everyone will have a great time and hopefully not too much candy.

Wednesday, October 19, 2011

Weight Issues...Still

OK...so we thought we rounded this corner and I still think we have, but I guess we didn't round it fast enough.  The crappy August 1st appointment where Hope was 17pounds 5 ounces is where I prefer to start.  She was then weighed in Medina on the 17th and it showed a loss (of course I didn't document the weight...pooh).  Anyway, today she weighed in at 19 pounds 4 ounces and that is after a big poop this morning and after she decided to throw up breakfast all over the nice guy that was weighing her in.  I think she is so used to seeing Dr. Preminger and the girl nurses that she got nervous around the male nurse (or maybe she is getting a little stomach virus...really hoping that is not the case).  I think that is AWESOME!!!  I am so proud of my little girl.  She is eating like a champ (drinking a whole lot more than actually eating...which is OK).

Now for the disappointment...we have to head downtown for a weight check and echo on Friday.  They (her regular cardiologist and dietitian) did not feel her weight gain was going as well as they hoped (I don't really know what they expected and I will be damn sure to find out on Friday).  I know it slowed down, but once we realized it was not just a fluke, we increased her intake.  Of course, I think it was too late for them and instead of giving me and Hope a chance, they jumped the gun (this is my opinion, but I will be sharing it with them on Friday). 

I know Hope has problems gaining weight and she really needs to get some additional weight on for the winter (as a reserve in case she catches something).  I also know she needs to pack on the pounds (literally) to be in the best shape possible for the Glenn.  But, as I am looking at it...she has gained almost 2 pounds in 2 months...that is HUGE for her.  She only gained 1 pound in almost a year...ughhh!!!  I think I am afraid of what they will find on Friday, but I am hopeful it will be a good appointment with little attitude from my little peanut.  She is notorious for being difficult and I would like to see that change...someday.

For now, I am off to see if she wants something else to eat.  We keep food all over the house and let her graze through the day...I think it is working and I plan to loudly disagree with her cardiologist on Friday...wish me luck and patience!

Friday, September 30, 2011

Oh my...that's why

Two years ago today...this was my daughter right after her Norwood.  We could see her little heart beating under the Gortex bandage. I so wish no parent ever had to see their baby look like this.
My little girl today.  I am so happy we didn't listen to the 'experts' two years ago!
I have been overly emotional this week.  It happens sometimes and usually I can figure out why.  This week...no luck.  Every little thing has triggered an unusually easy crying spell for me.  Now...I do cry easily a lot of the time, but this week really has been different...and more often.  Of course, I finally figured it out.  The past few weeks were the worst of my entire life.  Two years ago today Hope had her Norwood...that was actually one of the best days because someone (our hero...Dr. Mavroudis) took the chance on Hope and did her surgery.  A week before we were told that Hope was not a candidate for the Norwood and we should take her home to die.  Even as I am writing this I can feel everything from that day...the pain, anguish, hurt, and just plain disbelief.  It was a shock and totally unexpected.  She was scheduled for surgery and then they canceled it.  We didn't know what to do...like so many parents.  We trusted our doctors.  We trusted everyone.  We thought they knew best.  We are MUCH smarter now.  We trust...just not blindly.  We have no problem getting second, third, one hundred opinions.  We know that our daughter's life is worth everything.  She is a fighter and so are we.  I will continue to try and find anyone that is given the same advice...take your baby home to die...and have them get other opinions.  I don't think that is something ANY doctor or hospital should ever tell any parent.  There should be rules against this...they should inform parents about options, other hospitals, other doctors...rather than telling them there is no hope.  Not once were we told to get to another hospital...that another surgeon might be willing to help.  Ughhh...I hate writing about this...it makes me really mad nowadays.  It used to make me sad, but I know of two other babies that were at the same hospital that the parents were told the exact same information.  Both families transferred their babies to other hospitals.  One baby did not make it, but got to spend his last days at home with his family and the parents feel like at least they know for sure that their baby would not make it...because they got another opinion.  They won't have to think about the 'what-ifs' that I still think about way too often.  The other family has a beautiful son and he is now at home...AMAZING!  Sadly, I think about all the other families that I don't know that may get the same news.  I'm sure the doctors there would never give them my phone number.  I find them accidentally.  And sadly, I know I can't find all of them.  I worry that some parent will have the 'what-if' thoughts after they have taken their baby home to die. 

Sorry for the depressing post.  I told you ahead of time that I was overly emotional.  Two years ago today, my daughter was saved by the most brilliant surgeon ever...Dr. Mavroudis is and always will be our HERO!  He may not be from some big, fancy, number 1 rated hospital...but he is the BEST!!!
Our HERO!

Tuesday, September 20, 2011

Heart Walk and Birthday Party

This weekend was just plain crazy.  I was the co-chair for the Northern Ohio Congenital Heart Walk...benefiting The Children's Heart Foundation and the Adult Congenital Heart Association.  This year was the 1st year for the Walk...and definitely NOT the last year.  It was an amazing day with many wonderful families.  I cannot thank everyone that came out and walked enough...it was the best day.  We had over 20 teams and around 300 people all walking for congenital heart defect awareness.  Every single person there represented the many people that are affected by someone with a congenital heart defect.  Our goal for the Walk was $10,000...we raised almost $40,000...totally blowing our goal out of the water.  This was all thanks to the many families and friends that raised money, awareness, and support.

Here are some pictures of our amazing day:

Our MANY walkers raising awareness for CHDs
Jerry and Hope with Dora
The Heart Garden...for our survivors and the angels watching over them.
Sunday was another big day at our house.  We celebrated Hope's 2nd Birthday.  It was an amazing day with family and friends and a whole lot of fun.  Food was all ordered because I did not have the time or energy to make anything, but it was good food.  Hope got her first tricycle...of course she doesn't reach the pedals.  She also got a lot of clothes which is always good around here.  She is sure to wear them because it takes her a long time to grow out of everything.  This means she wears out all of her clothes before she moves into the next size.  She wears anything and everything we get from family and friends.  We never have clothes that were not worn...so different than the boys. 

Here are some pictures from the big day:

Her beautiful hair was styled by her Aunt Danielle...I really need to learn how to do her hair...she is so darn cute when it is done!
She will be able to ride it someday...hopefully soon!
My little princess!

Wednesday, September 14, 2011

Happy 2nd Birthday Princess

WOW!  That word is the one description for today.  Hope is 2 years old today.  There were so many people that never thought this day would happen.  There are so many people that have seen so many miracle in 2 years.  This is a day for a huge celebration...although we will have a little one today, another one on Sunday with family and friends.  Today is a day for reflection, but not too much.  I don't want to spend any time at all thinking about Hope's birth or the almost two weeks following.  There is time for that reflection...today is for thinking of all the awesomeness that is Hope.  She is amazing...she is beautiful...she is full of life!  She is also a typical 2 year old...running and playing...talking like crazy (and only we can understand it)...and throwing tantrums like no one's business.  She is my tantrum thrower like you wouldn't believe.  She can work herself up to the point she throws up...it is gross and so hard to watch.  She stomps her feet (which is actually quite funny), but watch out for the tears...they lead up to the throwing up. 

Now to share an amazing poem from the magnificent Stephanie Husted (I changed it because she has a son, but she expresses my feelings so much more eloquently than I ever could):


Happy 2nd Birthday

Happy birthday Hope
(I can't belive your two!)
Now climb right into mama's lap
I have advice for you.

I think that you will always know
Your special in some way
Someone may see you bear a scar
As your outside at play.

Don't ever be embarrased by
The special heart you claim
Remember you are loved so much
(God calls you by your name)

Don't let this life say "no you can't"
(There's many things to do)
I know you can do anything
That you set your mind to.

Stop...enjoy the little things
(the best things remain free)
Seek your dreams with diligence
And love your family.

Make time to admire God's wonders
And always remember to smile
Laugh sometimes at silly things
Learn how to face a trial.

Believe there is a purpose
For all things that we face
Start each day with hope anew
And learn to fall on grace.

I'm getting a little ahead of myself
(as mommy's tend to do)
I'll strive to teach you all these things
(for now your only two!)

~Stephanie Husted

Tuesday, August 30, 2011

Newspaper Article and Congenital Heart Walk

Hope made it to the newspaper again.  Please read the article here.  It is all for our Inaugural Congenital Heart Walk that will be happening on September 17th at Wade Oval in University Circle. 

All Ohio friends and family are welcome to join us at the Walk.  Following is the website for Hope's Heart Warriors.


If you are not able to join us, please donate.  All proceeds go to The Children's Heart Foundation and the Adult Congenital Heart Association.  Your support would be greatly appreciated.

Monday, August 15, 2011

Every Heart Has a Story - Take Two

Every Heart Has a Story

Here is my post from the first time Stef invited me to join the blog party.  I am updating it a little because I think it has been a year.  This is so much fun because I get to meet so many new families and hear their story...or read a story all over again.

My husband and I found out Hope would be born with HLHS (hypoplastic left heart syndrome) on May 13, 2009.  It is a day that I will never forget and the scariest day of our lives.  We know when we went for the fetal echo that Hope had a heart problem, but we really figured it was something 'minor' (not that there are really any minor heart defects).  My in-laws have some CHDs...holes and stuff that were fixed.  Never did we think or even know a baby could be born with 1/2 a heart.

We had already named Hope (after Hope Brady from Days of our Lives), but her name truly fit when we found out.  We also found out at that appointment that they were not able to find one of her kidneys.  We spent the next week couple of weeks having appointments and meeting with the surgeon and many other people that would help us through our pregnancy.  It was difficult because we had to make a decision whether to terminate the pregnancy or carry Hope to term and go through with 3 surgeries that may (or may not) save her life.  We did a lot of soul-searching, talking, crying, screaming, laughing, and even more crying and decided to give Hope a chance at life.

My pregnancy was pretty normal and I have always loved being pregnant.  I would have a ton of appointments and finally got to the point where I made the choice to only go once a month.  My OB wanted to see me more often and have more echos and more ultrasounds, but I found that I was depressed after them, so I decided to try and make it as normal as possible.  That really helped my sanity.

On September 9th everything changed.  I went in for a regular appointment and an ultrasound to check my fluid.  Low and behold...my fluid was low.  I never had that before and I was scared and so were the doctors.  I was admitted for observation that day and would remain in the hospital until Hope was born.  It was the hardest part of my pregnancy and scared my whole family.  It was also very depressing because I spent the whole day thinking about Hope and worrying about something happening to her.  I can't explain all the feelings I went through from that date until she was born, but it was hard.  I was checked every day to see how much amniotic fluid I had and every day it was fine.  On the morning of the 14th, I told the OB on duty that if it was still at a good level I wanted to go home.  Of course, it had dropped to an unacceptable level and they decided to induce me.  At 3pm, the pitocin started and so did the waiting.  I finally asked for them to break my water at 6pm because the pitocin wasn't doing much at all.  Our families were all there for most of my labor and it was nice to spend time with everyone and not have to wait through the hours by myself.  Of course Jerry was at work and I called him as soon as I found out, but I also knew it would take a couple hours for him to get there.

Hope Jane Wodzisz was born on September 14th at 10:01 pm.  She weight 5 pounds 12 ounces and was 18 1/2 inches long.  Her APGAR was 8 and 9.  She was screaming and kicking and looked so good.  Once she was born, we had them put in her prostin drip in her umbilical cord.  We dressed her up in her Christening gown and the pastor came and Christened her.  Our whole families were there for us and for our daughter.  It was beautiful!  We also had Now I Lay Me Down to Sleep there to photograph everything because we were not sure if she would be born kicking or screaming or not.

Hope was transferred by ambulance to the Children's Hospital at 12:30 that night.  Jerry and I followed in our truck (I was not officially released, but they let me go for a few hours).  Hope was in NICU and looked so cute and so small.  They started her on IVs and made her comfortable.  She took to the binkie almost immediately and looking back...it was the greatest thing they could have done for her.  We got back to the General Hospital around 3am and slept for a few hours.  I forgot to get discharged that morning, so they kept calling over to the Children's Hospital until I went back at 6pm to beg for a discharge.  NICU sent us home at midnight to get some sleep.  It was the hardest thing I have ever done...leave my baby at the hospital and go home.

Fast forward to September 21st.  Hope was scheduled for her Norwood on the 22nd and the morning of the 21st we met with the other surgeon (ours was at a seminar) as well as nephrology, genetics, and a whole bunch of other people.  It was and will remain one of the worst days of my life.  We were told that because of Hope's kidney problem (I forgot to add...they did find her left kidney...it is small and in a different spot, but God answered a lot of prayers) and the chromosome issue she shares with Jerry (that's another story altogether) they did not feel comfortable doing the surgery.  They told us that if she made it through the surgery, she would probably go into kidney failure.  I don't think many people could imagine how we felt that day.  They basically told us to take our healthy looking daughter who did not need to be intubated yet home to die.  Jerry and I broke down and left the hospital.  We drove home...probably not a good idea...and set about figuring out what to do.  We knew we wanted to give Hope a chance.  I got on the phone and Internet and tried to find someone that would help us.  I found our miracle.  Dr. Mavroudis is from Cleveland Clinic Children's Hospital and it was fate.  His wife's name is Martha (my mom's name is Martha).  His daughter's name is Paula (of course, my name is Paula).  It was destined for us to go to there!

Jerry and I went back to the hospital and put in the request to get Hope's stuff together and the Clinic sent an ambulance for our little girl.  It was too windy for air transport, so Hope went by land.  It was a long drive, but we are so thankful everything happened so quickly and Hope did so well on the ride.  We made it to the Clinic around 11pm and Hope was in PICU.  They sent us home that night and told us to get some sleep and come back in the morning to meet with the whole team of doctors.

We met with everyone the next day and even got to meet Dr. Mavroudis.  Hope's surgery was scheduled for September 30th and Dr. Mavroudis told us that even though she had more medical issues than some hypoplasts, as long as we knew the risks, he was happy to do the surgery.  What a lovely feeling...there was no doubt!

On September 29th, Hope was intubated.  They wanted her to get used to the breathing tube before her surgery.  The following morning Jerry and I cried as we handed Hope over to Dr. Mavroudis.  Our whole family was with us waiting for hourly updates.  It was hard, but we really felt she would do fine.  We spent 10 hours waiting to see Hope.  The updates were pretty good, but we were worried the whole time.  So many feelings and thoughts went through our heads and our hearts were heavy with worry.  At 6pm, we finally got to see Hope.  It was hard...harder than I ever imagined.  She was so swollen and her heart was beating under a piece of tape.  I was able to see her tiny heart beating...the scariest thing I have ever seen.

The next month was a flurry of activity and I could go on for a long time, but I won't.  Hope was released on October 28th....6 weeks after she was born.  She was released on NG feeds...meaning we had to learn to feed her through a tube (after she had her bottle) and how to change the tube.  It was nerve-racking and hard for me to imagine.  Jerry finally talked me into learning how to do it and then we were able to get released.  What a feeling...HOME!

The next few months were a whirlwind of activity and appointments.  It was such a wonderful time for our whole family.  The boys loved having Hope and mommy home all the time.  We didn't go out much and it was hard, but we didn't want Hope to get sick.  We even pulled Jerry from preschool to make sure he didn't bring anything home either.  We spent every holiday home together as a family.  It was a dream come true.  Halloween, Thanksgiving, Christmas...all at home with our beautiful children.

February 25, 2010 Hope went in for her pre-Glenn catheterization.  It was her first cath and it was just as hard for us to go through as her surgery.  Handing your child over to anyone that is going to intubate them and do anything is amazingly difficult.  It does not get any easier...ever.  Hope had to spend 2 nights at the hospital after her cath because her sats just wouldn't go up.  It was hard and it scared us so much because she was doing so well before it.

March 8th Hope went in for her Glenn.  Another day that will remain in my memory forever.  We knew our little girl, her personality, her temper, we had her home for so many months.  Handing her over for the Norwood was hard...the Glenn was harder.  I don't know why, but it was.  I broke down and really didn't want to hand her over.  She was so happy when they came to get her that morning.  She was laughing and smiling and looked like she trusted us so much.  It was heartbreaking.

Hope did great.  They did have to put her back on ECMO a few times because they made her LPA bigger.  It was hard to sit in the waiting room and hear them tell us that they took her off and then put her back on.  Dr. Mavroudis came to see us after the surgery and told us that there were a few minutes in surgery that he was worried...which made me worry too.  She did great though.  She recovered with just a little minor setback.  She was home in 6 days.  Imagine...home 6 days after open heart surgery.  UNBELIEVABLE!

May 13th Hope had a catheterization to balloon her pulmonary artery.  When they made it bigger in surgery it grew some scar tissue.  This happens a lot, but I prayed it would not happen to Hope.

It is now the 15th of August, 2011 and Hope will turn 2  in a couple of weeks.  She is on a quarter an aspirin a day, Enalpril, and Citric Acid (for her kidneys).  She hardly eats and we are struggling to get her to gain weight.  We have been struggling for a while and she has not gained enough weight this year and it is making her doctors very nervous.  She is walking, talking, and basically doing everything an almost 2 year old should be doing.  She is still in speech therapy and will probably remain in it for a while as she won't speak when the therapist is here.   We are so proud and this journey has brought us closer as a family, to God, and to many new heart families!

Sunday, August 14, 2011

Fair Time

I wanted to share these great pictures of our day and weekend at the Cuyahoga County Fair.  The kids all had an amazing time and Hope got to hop on some rides.
Having a blast driving in circles!
Getting ready to fly high in their helicopter.
More plane rides.
At the butterfly exhibit with cousin, Amanda.
Strolling around with big sister, Destiny
Riding the motorcycle with her big brother, Jerry.  This one scared me the most...she seemed so small on the motorcycle.
We had a great time and love the county fair.  Great food, rides, animals, friends, family, and a great time for everyone.

Now, we wait for Wednesday.  If you have some extra prayers, good vibes, ideas, or thoughts about getting Hope to gain some weight (preferably more than 100 grams), please share.  I really want this weigh in to be good and a happy occasion for both of us!