Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Friday, June 21, 2013

Not enough hours for everything!!!

HONESTLY!!!!! Did someone hit the fast forward button? The days are cruising by. Summer is nearly over and I don't even have half of the summer bucket list done... We have gone to Tarzan at the Scera Shell and we have been to seven peaks, played outside till late, had a BBQ, read almost every day, crafted and played at 3 of the 15 parks we are supposed to visit. But.... But.... It's going by way too fast... We have also had two sick little girls... Munchies temp was 103.6 the other night. And Miss May was 101.5 . It's not fun at all. May also visited the pulmonary specialist who confirmed her Asthma. So now she is also on singular granules. It has the most terrible side effects and she is more miserable on it then without. Besides her two inhalers. But I don't see any improvement in her breathing/retracting. Pulmo said we should wait until after surgery for her TSC to do further testing. Like a sleep study or a swallow/scope... I agree, with her spine being the first thing to heal and manage then we can look deeper at her breathing issues. Her hemangioma continues to change. I haven't taken pictures recently but I should. She has also started on whole foods. I really like LED weaning and have given her a tomato, cucumber, apple, peach, bread,and tonight she tried pancakes.... Mmmmmm. So far she loves it and is making a total mess. (I guess pancakes aren't a whole food) Munchie is living it up... She loves to play with the kids... Gator is doing so good with asking what jobs he needs to do before he plays. Ry Ry is always planning something. She has it in her head to do a mini back sale so we gotta get on that soon... Plus we are finishing the basement. I could do a happy dance... As our little family has grown into a big family we really need the space. Big reveal to come. And last we added four guppy fish to our household. Gator named his Mohawk warrior, Eden named her Fukerella... Not sure on either of those but we will see... 

1 comment:

likeschocolate said...

I feel the same way! Too fast!