Bela Girl

Every summer I forget how hot it really gets here. Then the heat comes and I clearly remember and I wonder how we'll make it though. I love being outside.. I would spend all day outside if I could so it makes me so stir crazy! It's hard to entertain my munchkins all day inside. Bela asks to go to the beach pretty much every day. I wish we could too Bela! I had my IFSP meeting today, and for the majority of the world who doesn't know what that is, it's a semi annual meeting with a state worker assigned to Bela's case. Today we discussed Bela going to preschool on her 3rd birthday and it blew me away! She would still have to qualify for it, and both her therapist and her case manager didn't think she'd qualify because she isn't actually delayed in any areas. I'm getting her evaluated next month, and if she does qualify she'll start school in February! My baby! I do think it would be very good for her. Especially snack time. :) In regard...

Bela's cath has been scheduled for August 11th at 9 a.m, check in at 7 a.m. I'm so glad we're the first case. It's no fun having her hungry and not be able to explain why I can't feed her. It's just going to be another couple days that I put myself in the "I have to do this, there is no other choice" mode and get through it. I count my blessings everyday to have had 2 hospital free years. Amazing! She is doing so very great right now, I know she'll just bounce right back, and hopefully have even better heart function after.

This is for no special reason in particular, it's just time. This is one of those just for me posts..:) All about Benson at 41/2: You still LOVE superheroes. You newest obsession is Teenage Mutant Ninja Turtles. You love to play outside, especially riding your bike. You loved preschool and know all your letters and letter sounds and can write a few words, but you would not participate in your graduation. You stayed behind the door hiding when everyone else walked in the room. We were wondering where you were and you were nervous to come in. It made me smile because you're just like me. Then when it was time to say the poem I know you had memorized, you didn't say a word. Oh and you refused to wear your hat. But it was cute to me because it is just who you are. You're so creative and imaginative when you play. You love to make up stories and I could listen to them all day long. You still sometimes confuse yesterday and tomorrow and I think it's funny. Your be...

I'm going to try to end my blogging slump.. Not sure why my posts have been so few and far in between. Lots has been going on. We saw Bela's cardiology team just one month after the last appointment I wrote about because it looks like she's going to need a cath in July. This cath was very unexpected for me so it has taken me awhile to wrap my brain around it and get used to the idea. I DON'T want Bela to be back in the hospital and under anethesia and be cut again and of course whenever there's possibility of something going wrong, it worries me to death. But Cath's are something that I'm told she'll probably need about every year of her life, so I better get used to it. So anyway, I'm not sure the exact date yet, but it will probably be mid-end of July, and it'll be here way too fast. They need to get some real accurate measurements to get a better idea of what's going on in her heart, and they will most likely balloon open a portion o...

Yesterday Bela and I spent the day at St. Joe's. When I pulled into the parking garage she cried, 'no, no, no'. She was NOT happy to get her vitals done. She took off down the hall, threw a tantrum, then threw up everywhere. After awhile she calmed down enough to take her pressures. She loved her echo and happily watched Elmo during it, and smiled up at Gary who could sing along to every song. The verdict: Tricuspid valve regurgitation looked slightly improved! Yeah! Aortic valve still looked bad, and her upper (arms) and lower (legs) pressures were 18-20 points different, and they worry at 20-40 points different. Her aortic narrowing is causing the difference. I was told signs to look for if the pressure increases. I'm prepared, and I'm not worried. They may have to do a cath to balloon open the aorta if problems do arise before next surgery, but hopefully we won't have to do anything until then and combine everything with the surgery. Balloon the ao...

...capturing my sweet, creative 4 year old and my adorable, miraculous 2 year old.