Wednesday, March 28, 2012

No Weight Check This Week

We are not heading to the doctors today to get Hope's weight checked.  She has all day appointments on the 2nd and they will be able to check her weight there.  I know she has gained and I am pretty sure she is almost 23 pounds (at least by the bathroom scale that I avoid).  On the 2nd she will start her day at an appointment with Dr. Kwan...her Nephrologist.  She seems to be peeing just fine, so I am hoping that means her kidneys are doing what they are supposed to be doing.  He likes to see us every 3-6 months and we are almost to the 6 month mark with Nephrology and Cardiology.  After that appointment we will head to Au Bon Pain for a nice lunch.  If anyone will be at the Cleveland Clinic that day...let me know.  We would love to have lunch, bring you lunch or a cup of coffee, or just stop by and say 'hi'.  After lunch we head to Cardiology where Hope will probably throw up everything she ate for lunch...she just likes them that much.  We are hoping for a great echo and a fast and easy appointment.  We do have to meet with her dietitian, so we will see what she has to say.  I think she will be pleased with how far we have come...I know I am.

I am pretty much thinking we will have a talk about a cath.  I don't know why I am thinking it because her last appointments have been great.  It just seems like it has been a while since we have had anything done and a cath seems like something that may happen.  I just hope her pulmonary arteries have been growing with her...maybe we could avoid the cath if they have been growing well.  I am kind of nervous about this appointment and I really can't explain why or where the nerves are coming from.  I just know they are there.

Wednesday, March 14, 2012

10.20 - WHEW

Great news and a big day for Hope.  22 pounds 7.79 ounces is a great number.  After the last month...and especially the last weigh in we both needed this today.  I have this fear every time we head to the doctor's office every other Wednesday that Hope will have lost or maintain without any explanation.  It is hard when there is an these stomach bugs that have plagued our family this winter.  I am extremely grateful that it has not been something worse and we have not had any hospitalizations from any virus...I just really hate stomach bugs.  They take away so much progress we have made with her weight and it drives me insane.  I know it has to hurt her too...watching her throw up is so hard.  I feel so bad for her when she gets sick and I know there is nothing I can do for her. is a great day in our house.  The weather this winter has been amazing and today is looking to be another beautiful day.  In Ohio...that is saying something in March.  I plan to get the kids to spend the afternoon (when Jerry gets off school and I am done working) outside...soaking up the sun and playing like crazy.  Spring is almost here and I definitely have spring fever! 

Monday, March 12, 2012

2 Years Post-Glenn

I cannot believe it has been 2 years since Hope's last open heart surgery.  2 years since we handed her over to the surgeon to work on her little broken heart.  2 years that we were told would never happen...what a miracle Hope is!!!  I think back to the Glenn and am always amazed at how well it went.  6 days...that's it!  She had open heart surgery and she was only in the hospital for 6 days.  So many people gave up on Hope right after she was born and every single day is a miracle because we didn't listen to them.  We took our daughter somewhere else and found a team of doctors that were willing to try anything to give us Hope.  They told us the risks, the unknowns, the good, bad, and ugly.  I don't really know if they expected Hope to do so well...I don't want to ask the question or know the answer.  I just know that my beautiful daughter is doing great.  She is growing (SLOWLY) and developing at her own pace.

Last Friday I took Hope for preschool registration.  Can you believe my little girl is almost old enough to start school?  Oh boy, that took my breath away.  Anyway...the little stinker decided not to talk.  That is really no surprise because she doesn't really talk to many people other than me.  She is still receiving speech therapy, but hardly talks to her speech therapist.  She will probably be considered special needs because of her medical and speech problems, but I think it will be great for her to be at school with kids her age.  She only spends time around her brothers and sometimes her big sister, so I am hoping time with other little girls might help her open up and start talking more often.  For the heart moms out there...I am scared of all the potential bugs in school.  It scares me that she might get really sick.  She has never been hospitalized for anything other than her heart and I don't want that to change.  Her brothers have been in school and brought home a lot of you think that has helped her immune system enough to let her go to school?  Any advice?  I will be driving her because the thought of putting her on the bus scares me as much as the bugs she might get.

On the weight front...we will find out on Wednesday.  Prayers for a good weight gain are always appreciated.