Friday, September 21, 2012

Cardio Update

Raygen trying out her formula waiting for Zoie to get out of school, lol!  I had just given her a bolus so all she got was a drop and she wasn't impressed. 
So she decided to kick it instead... 
and just play with it. 
She didn't mind the bottle too much. 
Her favorite thing to do in the car is to kick her tv, lol! 
Playing Peekaboo barn on my nook. 
She loves this game and it's really good therapy.  Gets her to use both her hands. 
Raygen multi-tasking.  Nook and tv, lol!
So Raygen's cardiologist appointment was stressful, more so for her, but stressful.  Raygen cried the entire time through an ekg and echo and at one point made herself sick during the echo.  Dr. Park (who is wonderful) finally came in the room and said that was enough stress for one day.  Raygen's results though were great.  Dr. Park thought Raygen's heart function was good and since her o2 and heart rate was good, he was pretty happy.  We didn't get a good look at her stent, but Dr. Park felt like it was probably doing good since everything else looked good.  We did find out that Raygen's left side of her heart, although very small, does have some function and is pumping a little.  This is awesome news and Dr. Park feels like this is the reason that Raygen's heart is doing so good.  Most HLHS babies have no left side at all, so for Raygen to have a little one that works is amazing.  I don't know why we didn't really know this till now but it made my day.  We did discuss with Dr. Park when to do Raygen's follow up lung perfussion test (which will make sure her stent does not need ballooning) and he thought within the next two months.  This just makes my tummy hurt.  I know Raygen will need an iv and sedated and it all so overwhelming and stressful for her and I hate to see her go through it all.  I know that I have to let the doctors run their test for her safety.  I would rather catch an issue quickly rather then an emergency so I'm giving my fear to God.  We decided this time we want to have her lung test done at Children's in Seattle rather then Tacoma.  We are just more comfortable at Seattle and I feel like they would know what to do for Raygen better in an emergency situation.  Talking about test and hospitals just reminds me that my baby is not "normal" and it just makes me so emotional.  Raygen is wonderful in every sense of the word and I have had 3 months of no doctors and no test or blood work and it has been amazing.  We have been seeing Raygen shine and learn and she just amazes us all.  I guess in 3 months I got to forget I had a "heart baby" and I just got to enjoy my "baby"
We also saw Dr. Polley and had Raygen's ears checked again because she has sounded a little congested and fussy the last couple days and they looked fine.  She still has a little fluid but no infection.  Dr Polley also gave Raygen her flu shot.  Poor girl had a rough morning.
We are also getting referrals to a new OT therapist in Seattle, PT in Puyallup, and we are also going to take Raygen to get evaluated by a developmental pediatrician. 
We have some big appointments coming up so please keep Raygen in your thoughts and prayers.
Hope everyone has a wonderful weekend.  I know I'm going to enjoy my daughters and thank God for all my families blessings.