I have updated Em's photo page. I've added not new photos, but old photos of various hospital stays. Check them out if you'd like :)!

My Story

Hope, Courage, Bravery, Endurance: Living Life with CHD

Emily is our miracle.  She is a fun, happy, loveable 7-year old who just happens to have a complex congenital heart defect - Hypoplastic Left Heart Syndrome (HLHS)

Journal

Monday, May 11, 2009 8:46 PM, CDT


I wanted to post this picture of Emily as a Butterfly as it goes with the new design of her web page.  She is 4 years old in this picture - she has grown up a lot!

I really should be updating Em's journal more often, because there are lot's of things going on around here but when I finally get a chance to write I have forgotten most of them.

I had a chance last week to go to a Parent Meeting for Emily's new school.  I met the principal Mrs. Gallegos.  I was also able to meet and talk with Em's  teacher for next year Mrs. Gonzales, and the Special Ed Campus Coordinator Mrs. Westfall.  I am very exciited to be going to the new school and very impressed with the staff.  We will be able to have an IEP meetiing before school starts so that everything can be in place when Em starts second grade.  I am determined that she will at least start 2nd grade when everyone else does, she may only go a few weeks but I am hoping she will at least be able to start!  I will be taking her into the pediatrician for a couple of check-ups between now and then so I can discuss these things with her and see what her medicial advice is.  We have an appointment with Dr. Glasow (cardio) next week, so we will see what he has to say and since we see him every 3 months, we will be able to re-evaluate with him again in August before school starts.

Emily had her "Fairy Friends" Book Club last week.  We did the craft, we had snacks, we played, but we only read one book.  Emily was so excited to have friends over she just wanted to play.  We did read "Pinkalicous" and next month we will read "Purplicious".  These are her favorite books!  She also loves Fancy Nancy books, so we may read a few of those next month too.  But even if we only read one book and they play together the rest of the time, that's okay.  The whole point of the book club was just to provide Emily an oppurtunity to interract with others.

We have been under "self-imposed exile" for almost 2 weeks, since the swine-flu started.  I know only 3 people have died from it but all 3 of those people were medically fragile and at least one of them had heart complications.  So......I feel totally justified in my avoiding all germs at all costs strategy (other than the one time to the swmming pool and the dead bunny rabbit, BUT, that is story for another time!).  This week we have decided to get out in the real world.  We went to church yesterday and Craig and I both spoke during the Service - the dreaded Mother's Day Talks.  It actually went really well and I felt pretty good about it when I was done.  However, I can give a 15 minute talk in 6.5 minutes when I'm really nervous.  I also had a terrific Mother's Day, breakfast in bed, boys wanting to help with everything and then Craig grilled for dinner.  It was a Fantastic Day.

Emily was complaining about a headache (she gets them fairly often), she was upset enough that I called the pediatrician.  But she seems much better now.  I decided to read the side-effects on all her meds (seriously, meds have every side-effect you can possibly imagine) and 5 of them list headache as a side-effect. So.....we'll talk to the ped about that at our next appointment.  Some of the heart-meds she's been on forever so I don't think it's them and it's not like she could just quit takiing those anyway.  I'm sure the benefit outweighs the side-effects.  I think her appetite stimulant might be the one that is causing the headaches (if it is actually a med causing them), the timing on when that started and the headaches makes me think that. 

Everyone is doing pretty good here.  A month from today is graduation (seriously, how did that happne?) and the boys finish school the week before that.  Time is going way to fast!  I will update again soon.


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HOSPITAL INFORMATION

CHRISTUS Santa Rosa Children's Hospital
333 N. Santa Rosa Street
San Antonio, TX 78207
(210) 704-2011