Abby is in college

It has been so very long, and a long hard road for my heart baby.  I will post some pics of my dear abby in here.  SHe is 19 now and in college.  She has had 3 ohs, and 1 palate surgery.  She has had a head bleed, and subsequently have taken her off coumadin since she was 4.  She now goes to Loyola for her cardiac appointments.  We still miss Dr. Roberson.  

 abby

 abby

abby

becky

abby

family trip, 1/2 cut out to washington

this is abby at about 3 mos.  beautiful

As you can see she is beautiful.  We are now dealing with the fact that she has limited peripheral vision. Hard for her to deal with, but we all are dealing with it.  

She is only taking one class this semester.  I am very proud of my college student.  Today she is working on homework for school.  Long is the day in where she use to cry because she had to go to school  bullies are a bitch.  I'm so glad my daughter is going through that any more.  Abby loves to dance.  She loves to act in our theater.  She just had her braces removed and has a beautiful smile, as always.  Stay tuned for more stuff.  

I will be posting stuff on chds I got from another blog.  It may help someone out there.  I will post the different chds even though chd week is in February.  If you have a question about congenital heart defects, post a comment and I will try to answer.  

Until next time~~~~~~~~~~~~~~~~~~

Carole

Hello! It's been so very long

Hello everyone, heart friends, family and supporters.  It has been too long since I've written on this blog.  I have been busy with work, and my girls have kept me very busy indeed.  It has been 8 years since I've started this blog, and the journey has been difficult but oh so worth it.  

My heart child, Abby is now 18, and her sister will be turning 15 in 2 months.  The time has flown.  It has not gone without incident however.  We  have had a few trials and tribulations.  And soon we will have a great celebration.

My husbands insurance had changed, and we've had to make adjustments, and with this new presidential administration I do fear for Abby and all that have pre existing conditions.  We will all have to wait and see.

Abbys' changes.  Abby was diagnosed a few years ago with a horse shoe kidney.  We found this out through testing, and the fact that she kept getting urinary tract infections.  It turns out that for Abby, as of this writing, her horse shoe kidney presents no harm for her.  I was worried about alot of things, and I will explain that later.  Then last year, when Abby was in high school taking drivers ed.  She flunked the eye test in class.  We were all devastated especially Abby, as you can well imagine.  Her father took her to the DMV, an ophthalmologist  It looked bleak.  I also took her up to U of I to get some additional testing done, still no help.  We still need to get a CT of her head, and hopefully we will soon.  It seems that Abby does not have enough peripheral vision to drive.  We found out through testing at U of I or U of C that she has smaller optical nerves than most.  The neuro  ophthalmologist believes Abby was probably born like this and ordered the CT and another test.  That doctor is no longer at that hospital. 

So Abby will not be able to drive if ever....and we wait to see what her new PCP will do. 

When I return, I will give you some information as to what a horse shoe kidney is, and why I especially was concerned.  

~~~~~~Until next time,

Carole 

Some helpful info

Yes, I've been on Pinterest again, and found some helpful information on HLHS.  HLHS is hypoplastic left heart syndrome.  The following links explain it much better than I can.  In a nutshell, HLHS is when the left heart is not fully formed, and underdeveloped.  This includes the left ventricle, the valves, such as the mitral valve, and can involve the aorta. 



http://www.pinterest.com/pin/277464027018295685/

http://www.pinterest.com/pin/277464027018295673/


There are various congenital heart groups on facebook for support, and you can also find info on twitter and support with #chd.  

Until next time

Carole
mom to Abby, 16
HLHS

Some information I grabbed off pinterest

http://www.pinterest.com/pin/306385580873514435/

http://www.pinterest.com/pin/261490322088978226/


HLHS, or hypoplastic left heart syndrome  This is what Abby has. http://www.pinterest.com/pin/105060603782662890/





I think I 've given enough resources to start.

Until next time.

Carole

Chd info on Pinterest

It has been a while since I updated this blog.  My HLHS child is now 16, and will be on the roads very soon, possibly.  We have to check into drivers ed in the spring.  She is doing very well.  Abigail has 3 A's as a sophomore 2 B's and 1 C.  I have to say this year has less drama, perhaps to Abby growing up a bit.  Perhaps to having much better teachers than ever in her school time.  I vote for both, with the latter being the main issue in my opinion.  

The main reason I am updating is because I love pinterest.  Here is my board for chds and I plan to add to it.  http://www.pinterest.com/mom4abb/congenital-heart-defects-info/  Please check it out.

Until next time

Carole

We recently had another holter monitor test for Abby.  No call from the cardiologist, so I am assuming all is good.  Any heart moms out there reading this blog.  It has been a while since I blogged.  My heart kid, Abigail or Abby is 15 yrs old now.  She has HLHS, and while she is limited in activities, she is quite creative.   I'd love to get together with some heart moms who have kids around Abby's age.  I am going to publish this blog in hopes of a get together.  I am also going to post information about congenital heart defects as I have promised so many times before.

For all you heart moms, while Abby is 15, I do know some of what you are going through.  I hope you know you have a shoulder to cry on if necessary, and an extra ear for listening.  Lets' talk, share our experiences, stories and tears together.


Abby's progress:  While Abby fatigues more than that of the usual teenager, she is fearless.  There is nothing she won't try, and don't try and tell her she is still a child.  She loves the stories from Hetalia, and will tell you she doesn't like her sister (but in fact she loves her, she'll never admit it to you though)  Temperamental while charitable and thoughtful are some of Abbys' characteristics that come to mind.  She is an avid writer, even though with her motor skills it proves difficult, Abby is quite the story teller.  I hope one day she is a number 1 best selling author.  I believe with all my heart she can do it.

Abby loves animals and loves our dog Sparky.  Abby volunteers at the animal shelter once a week with her best friend Jana.  Very much girls, my two daughters couldn't be more opposite.  Abby loves the mall and to shop, and my Becky, may love the mall, but hates to shop.

This summer will be without summer or drama camp due to my work schedule and mileage on my car.  Instead I am hoping to get a family membership at the YMCA and do some swimming.  Abby loves the sun, summer, and swimming.  Swimming lessons are in order for both girls as well as other activities and splash station.

While Abby fatigues easily, she is my night owl.  And congratulations to Abby, she is becoming a reader ( I hope)  We are both reading Divergent.  Divergent is the book highschoolers have to read over the summer.

That is my update on my highschooler, and heart kid.  Until next time.

Carole

Heart picnic is scheduled for late September.  I would like to go, I think it will be good for my Abby.  It just reinforces things that she is not alone in this.  There are other kids like her, or even worse off.  I do think my young heart kid is having puberty problems...we think menses is about to start...oh boy!  I know tmi.  she is in bed laying down right now...she has not been feeling well for the last 3 days.  She did vacation well except for the last 2.  

On another note, Chuck, my husband is supposed to take her for a 3d mri, and see what other info they can find out.  Until next time.


carole

Hello my friends, 
It has been a long time since I have posted here.  My chd baby is now 14, and will head to high school in a couple of weeks.  She has her limitations, but we are so grateful to have her here today.  She got a good check up at the heart doctor a week ago, and they would like to do a 3 d mri on her.  They need to check if it is safe for her since she was coiled when she was a baby.  Stay tuned for more info on my dear Abby.  Until then, here is a link about stem cells and how doctors are using them for babies with chd.  

http://abclocal.go.com/kabc/story?section=news%2Fhealth%2Fyour_health&id=9179106

Hypoplastic heart syndrome

For more info on hypoplastic heart syndrome here is a link: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002096/

We choose the 3 step surgeries for Abby. She had the Norwood and was on the vent for a long time. Everyone kept telling us Abby was on life support for a long time. I don't think they expected Abby to live, but here she is today. They had extubated her once, and she failed, second time was a charm! We love you Abby.

Now for your part. If you don't have pulse oximetry testing in your state to screen newborns write your congressmen. Tell one person about congenital heart defects. Look it up if you don't know what they are. Learn something new every day! Tell someone you KNOW someone with a heart defect, and you do! Abby! Get to know Abby, she may talk and walk a little different, but she is just like you and I!

Signs and symptoms to watch out for in a newborn.

Bluish coloring around the lips, feet or hands. There may be some on the chest.

Heavy breathing

Not feeding well. In abbys case she would latch on with breast feeding but couldn't suck. Actually she could, she just didn't have the energy.

If you have a chd in your family history, seek help before pregnancy, and get a 2d ultrasound. Genetic testing should be available, and its better to be prepared then to be totally blindsided. History of a chd can also mean if someone has something as little as a hole in the heart. I didn't know that....so anything that you may think is non essential, do share with your doctor anyway.

Please share my story, and info with all you know. 1 in 100 children are born with a congenital heart defect, and funding is not as much as is pediatric cancers or autism.

Thanks so much for reading.

Until next time.

Carole

My heart kid

It's hard to believe that Abby will be 13 officially in October. We had a splash station party for her in August. Splash station is a water park. It rained that day so they had to shut the park down, so they didn't get to play too much, but everyone said they all had fun. Abby needs to write thank you notes for her gifts.

It's amazing, it feels like just yesterday I was crying my eyes out for my beautiful teen. She was on life support for two months. And yes, I make sure people know what a rough start Abby has had. Abby has her moments, but she is a great kid, and a very loving kind girl. She hasn't had it easy like some kids, and worked alot harder to do things, unlike Becca. Don't misunderstand me, Becca didn't have it so smooth either, but she didn't have 3 open heart surgeries and a palate surgery like Abby.

Abby is in 7th grade, and so far so good. She's a big bike rider, and I want that for her, she's not lazy by any means. Of course unless it's her bedroom. That's another topic for another day. She loves her sister, and treats Sparky, our puppy beagle, like a baby too. Abby desperately wanted a baby brother, but I was too overweight, and too old. So we had to settle for Sparky. We love Sparky...when he's not in the garbage.

Abby takes her own medicine, and is more mature then last year. I'm almost saddened she's growing up, but she is beautiful. Did I say she was kind and beautiful. I'm at a loss for what to get her for Christmas. She just might get that cell phone. Boys haven't started to call yet. I hope I have a few more years. Well that's all for now. We will go for another heart check in November or December. Everything so far has been great. I will post some info on Hypoplastic heart syndrome for those who don't know what it is. I haven't posted on this blog very much, but I will.

Until next time.

Carole

It's been a long time!

I haven't posted about my heart kid in a long time. She will soon turn 13 in October, but we will have her birthday early. I am treating her to a splash station party. She deserves it, despite the fact she has her moments...today she really helped mom with cleaning. More than I can say for her 9 year old sister. I don't treat my kids like slaves though, I do help them, and for once ..Abbys room is really organized. It could be better...but there's so much in my house to do. I'd rather blog than clean. My 13 yr old shares a puppy with her younger sister Becca, and they do a wonderful job taking care of their puppy beagle Sparky. I've heard all the parents say, ya wait ...but I think they are pretty dedicated. These two girls do appreciate some things. The only problem however, is they think the puppy is a doll. They are always picking that puppy up. LOL. I have alot of heart friends on twitter and facebook, and I will be passing along some of their very good info here. Remember I do have a yahoo group open for support. Go to chd babies on yahoo. I will print the whole url shortly. Until then.


Carole

Pages and links of interst on this CHD month

Hair bows for heart kids. ADORABLE!!

http://www.flowerzinherhair.com/index_files/Page781.html


find out about congenital heart defects.

Hello my friends

I haven't written in along time. I know that many of you have waited for the prizes I promised, and I will get those off. One of the companies majorily pooped out on me. Now I have to pick up the peices! I am so sorry for that. Do any of you have baby girls? I have a couple baby bracelets... I need to find them again...I think most of you had bigger kids though. NOW some of you should have gotten some items....I talked to reps and owners...I believe someone shipped jordan essentials and another kondash kreations. I have some more that I can do. I will not break this promise to you! You are the best! All of you, heros as are your children.

Take care.

carole

The reason I had such delays was that I had to work, and started 2 part time jobs..I really do apologize a million times over!

Another Milestone for Abby!

Anoher Milestone for my heart baby! She made her first communion this Sunday! I have pics up on facebook, she is a doll!

Next yr her younger sister will do the same!

For those of you still waiting for things in the mail from the giveaway in Feb, they are coming. I got 2 new jobs, and I am reallly really trying to get these out to you. Thank you all for visiting my blog about my miracle and lovely child abigail!

Carole

Site for chd parents, grandparents, kids and others who support chds

http://zbchde.homestead.com/kidswithheart.html


Kids With Heart NACHD, Inc. started out as a local support group in Northeast Wisconsin. Soon

after we went National. Kids With Heart NACHD, Inc was the first National organization dedicated

to providing support, education, and awareness for congenital heart defects.

Check it out today. Karen does an excellent job keeping us all informed. One thing she does is parent matching.
http://health.groups.yahoo.com/group/chd_babies/


have a good day.

Carole harris
I also have a chd group on yahoo.

Help for cardiac kids

If you have had a surgery, then maybe you've heard of scar tissue or maybe not. Either way it's something heart kids have to deal with. Check out this article.

http://www.news-medical.net/?id=46720

Have a great Easter

Carole

What a wonderful world indeed/ Let's have heart giveaway!

Prizes should be arriving. I've emailed many of you. You and your children are truly heroes in my eyes, and to everyone I have talked to on yahoo messenger. Now, I do have some moms who are also willing to ship gently used clothes should any of you moms need any. Just let me know. If I haven't been in contact with you not to worry. I will also post this on cafe mom, as I know that is where most of you heard about this giveaway. Please keep in touch!



Carole

Free flight information

I always get asked this question. If I know of any financial help for families. Here is a link, http://www.itsmyheart.org/resources/flight-assistance/ and it's to a great site. It is free flight information, and I hope it helps someone out. If you have information for support, financial aid, or other resources, and would like to follow or blog roll with me please comment, or email me at cachech@hotmail.com I look forward to hearing from you.

carole

Children and learning disabilities with chds.

may be he/she has add or a learning disability? Many doctors, cardioulogists and heart surgeons don't like to talk about, and research is ongoing. Parents are often hit in the face with every day struggles unforseen. There is help.

http://www.congenitalheartdefects.com/learningdisabilities.html

Carole

#links

#links

http://abbyandfriends.blogspot.com/