Saturday, May 29, 2010

It's hard to believe there was a time, not too long ago, that I thought that Faith being "different" would be forefront in my mind at all times.

Now, sometimes I forget that she is "different".  

Imagine that.

I don't know what I was thinking.  

"Different" is good.

                                She plays.


                                She cries.

                                She eats.

                                She sleeps.

                                She laughs.

See?

Being "different" is not so different after all.

Friday, May 28, 2010

Getting to the Heart of the Matter

Faith had her check up at the Pediatric Cardiologist yesterday.  She had an EKG and an echo cardiogram.  The doctor wanted to see if the PDA (hole in her heart) had closed up or at least gotten smaller.  The hole indeed did get smaller...it is now the size of the diameter of a strand of hair! Wow! The doctor said that it is now "insignificant" and would not need to be repaired.     But, the next words out of his mouth took me bit to process.   He said that even though the PDA got smaller, in doing so, it "unmasked" another problem.




It's called Coarctation of the Aorta.  Basically, it is a narrowing of the aortic arterial arch...the side that pumps blood to the body.  The cardiologist drew me a picture of the area of her heart where the blood flow is now "turbulent".   The doctor said that at this point it is very mild, but it is something that can progress, sometimes quickly, so Faith will return for another echo in a year or sooner if she becomes symptomatic.  He also said her risk of infection in that area of her heart is increased, so if she has to have any IV lines placed for any reason, she would need some antibiotics to prevent bacteria from entering her heart.    

I was filled with anxiety through the explanation from the doctor...and I found myself swallowing hard and holding back tears.   But, Faith has been a fighter from the minute she was born.  Her will to thrive is unmatched and I know that will shine through in light of this new diagnosis as well.  

Besides, her heart is tightly entwined with mine...we'll get through this together.

Wednesday, May 26, 2010

Peace Out!


I can't believe another school year has come to an end, seeming so abruptly.  I now have an 8th grader, a 6th grader, a 4th grader and a 2nd grader.  My babies are growing up on me!  And really...how can I be old enough to have a son that is one year away from High School??  Say it isn't so!  

Someone said to me today that they were ready enough for summer as much as I WASN'T...I said to him, you must REALLY be ready for summer then!   Don't get me wrong, I love to sleep in past o'dark thirty as much as the next person.  I also like not having to rush around in the morning frantically trying to find lost shoes and misplaced reading logs.  I really like not having to nag the kids to do their homework in the evenings too.   Buuuuuut, I am am not a fan of summer vacation...mostly because I am not a fan of children who are bored and fighting.  That about sums it up.

All of that being said,  I am going to do all I can to have a happy, memorable summer.  The kids deserve that right?

Of course they do!

So, according to Gracie...  Peace out school, hello summer!

Tuesday, May 25, 2010

Oh, How I Love Those Almond Eyes

        

           Aren't they beautiful?





Saturday, May 22, 2010

Bring it on!

I'm ready for summer...but only because summer usually brings a reprieve from sickness at our house.  The last year has brought one thing after another.   Faith has endured many hospitalizations, Ph probes, and many visits to the oncology/hematology clinic, GI doc and cardiologist. We've had the swine flu, the stomach flu, ear infections, croup, an emergency gallbladder removal surgery, an allergic reaction to pain medicine that put me in the ICU and RSV.

Enough already!

Gracie was just in the hospital this past week with what the doctor believed was another bout of pylonephritis (kidney infection).  She spiked a 104.5* fever and her symptoms were reminiscent of her previous kidney infections.  I took her into the doctor as she wasn't getting better and had all but stopped eating and drinking.   Her breath smelled like she drank a bottle of nail polish remover.  Low and behold, her urine test showed ketones, which indicate dehydration.  So, we were shipped off to the pediatrics floor of the hospital that has become like a second home to us this past year.
                                Being pumped full of antibiotics and IV fluids






                                 So tired...

                                Ouchie!  She handled getting the IV like a trooper.


                                Faith camped out with us too!


                                 A very special visitor...Nana!


                                 Always time for a kiss


Gracie had labs drawn when she was first admitted to the hospital.  The next day, the pediatrician came in to see her and told me that Gracie's blood test showed that she was neutropenic. (low neutrophil count--a normal count is above 2,500--Gracie's was 300) as well as having a very low white blood count.  Weird thing is, Faith is neutropenic too.  The doctor said she was scratching her head trying to figure out what was going on with Gracie.   Her urine cultures grew nothing, so the kidney infection diagnosis went out with the wind.   After some pondering on the doctors part, it is thought that maybe the neutropenia is a familial thing.  Something genetic.  So, Gracie will have her labs done again in two weeks.  If her counts have not risen to normal, she'll be going to see Faith's hematologist.  Be still my heart...

But, I did tell the doctor, that all of this MUST be their father's DNA.

Anyway, Gracie came home on Friday.  Friday night at 10:15, Faith started vomiting all over her crib.  She continued to vomit until almost 5am.  Lordy, the kid was wiped out.  She was so pale and tired.  She even stopped  opening her eyes when she would vomit.  Pretty much slept right through it. She would rouse a bit, vomit, then it was right back to a deep sleep.    I worried all night that we would be heading off to the hospital. Again.     Thankfully, Faith held her own and drank Pedialyte like a champ and perked up by dinner time.

If anyone else comes down with it, I may just run for the hills.

So come on summer....bring it on!

Monday, May 17, 2010

Ride 'em cowgirl!



                                     Sitting pretty on my pink horse...


                                    Okay, I think I'm all done...

                              
                                 Hmmmm, now how did I DO that, anyway?


                                 Let me just have a taste of this pretty saddle...


                                  I did it! I got off all by myself!


This girl amazes me, each and EVERY day.

Sunday, May 9, 2010

Stand Up Proud!




Faith standing up all by her little self!