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