We've been quiet for a while...my son graduated from high school and we've moved to a single story home..it was a crazy chaotic few months. This past month we've just enjoyed being settled and we've been to Milwaukee for 5 days for medical appointments (again). Madilyn's appointments went great. GI is thrilled with her growth since they upped her calories. It was the first time in 11 months that we finally had to increase her calories so she'd gain weight. She's just over 23 lbs now and almost 3 years old. The retina specialist was very happy too. The fluid pocket on her right eye is still there but it's very stable at this point and is not in a vision threatening position so that's a relief! It also means they don't have to put her under anesthesia again until December to look at it.
We're enjoying our new home and the Peanugga is learning to navigate her gait trainer outside in the grass. It's fun to watch her...she so LOVES it! She has learned that the road in front of our house has a very slight hill and she'll walk/run super quick for about 5 steps and then hang on her gait trainer and coast just like papa does when he's pushing her in the shopping cart. She giggles like crazy when she does it. She sure is smart.
With all of our accomplishments have come challenges. Madilyn is sleeping in her very own bedroom since moving and that's going really well. I now sleep with the video monitor...:) When it's warm outside as much as we love to be out there she still doesn't deal well at all with the heat. The combination of allergies and just her reactions to the warm temperatures usually mean tons of fun while playing and lots of vomit, sometimes for several hours after we've been outside....nobody can tell us why...(imagine that), it's just what she does....it's frustrating. Everything we do seems to have a trade off or consequence...we just have to weigh heavily if the consequence is worth it and how much stress it'll put on Madillyn's little body. Is it worth it to spend the entire day outside with family and having fun for her to be vomiting and exhausted for hours after? Sometimes it is....sometimes it isn't...it's all a huge juggling act....I'm terrified to drop the wrong ball...
Madilyn has been making huge progress with her speech and motor skills. She's pulling to stand on all of our furniture and she's an extremely busy 2 year old that doesn't hesitate to tell us no. So just when we're starting to feel like the worst of everything is maybe behind us we deal with the news that two little Dandy-Walker sweehthearts have earned their angel wings over the past 5 weeks because of this rare, nasty disease....and it makes my heart break...one of the families we followed in a group we belong to. Both of our girls had their shunt issues at the same time....my heart breaks for them.....that could be us...I try not to let my mind go there...it terrifies me...
Then to add to it we get the phone call....the dreaded phone call stating that a medical department closer to our home won't even see Madilyn because she's way too medically complex and fragile. She scares them, they refuse. It makes me want to scream! Madilyn has multiple medical diagnosis and they are all rare...one of them so rare that she's the only one in the world....she shouldn't be alive they tell us, she shouldn't be able to do anything they tell us............but she is and she does....I want them to see what we see. I want them to meet her before they shun her and see what a happy, beautiful little girl she is. They have never met her, they think that she's a vegetable because on paper that's what they say she should be.........I hate "they"...I hate that she's stereotyped and shunned and she's not even 3.....the ones that take the time to know us love her. She's an inspiration, not something to be feared. She's a sweet, adorable, loving little person....not just a medical anomaly...and something to be gawked at.....she's so much more than just their statistic, but they don't take the time to see that.......it makes me incredibly angry and sad all at the same time.....
"They" can see what they want....and I will see what I want...we live it every single day...it is our reality...we choose to live for the positive and focus on the good things otherwise the negative will suck us in and that's a place we don't want to be. We also choose to celebrate....the little pink crocs.....cause it's all about the little pink shoes...:)
