Well, seems like we are all playing the waiting game now… It is tiresome, very frustrating… but necessary and mandatory. DeeVa is as playful as always, never missing a chance to smile at Daddyslave, or to stare at Mommyslave endlessly asking for food… We brought the vanilla octopus to her room so she would have the familiar smell when she sleeps.
We are now sitting & waiting for the Cough Assist to arrive. The med card approved it but now they are looking for the cheapest seller. And we also have yet another holiday next Monday, so… it’s all about wait, wait, wait…
DeeVa is still intubated, her surgery closing us nicely. She has been very strong, her will never failing. The respiratory therapy (mainly saline through pipes) keep her drowning in her secretions, but since they are coming out and flowing her oxygenation is quite stable between 97-100%. They keep poking her to find out if any bacteria is growing, but no… everything seems to be fading away, leving just the spoils of war… ermm… more drool.
Seems her preferred side for resting and sleeping keeps on being her left side, she doesn’t complain as much when she is like that. We also noticed that while playing with the finger puppets, her attention always focus either on Uni or the Bear-ly Princess. They both display hues of lilac, so I’m thinking that is one of her favorite colors besides bright yellow (the main color of her most favorite toy, MrLion… who has been with her ever since she was born).
We’ve been taking some movies for her delight. We know her favorite pastime was watching Charmed, ER (somehow I think she’s not a big fan of this one right now… She must feel she was sucked into the TV…), the Tyra Banks show, and of course America’sNextTopModel… But we can’t really get the shows so Disney classics and then some will have to do. It was fun watching Pirates of the Caribbean 1, as we used the pirate finger puppets to act it all live, in front of her, just at her grasp!
While not at the hospital, Mommyslave & Daddyslave have been working at gathering the necessary paperwork to keep things rolling. We went to Mayaguez on Thursday night so we could get Deedee’s legal stuff, and so I could pass by my workplace on Friday morning. Plenty of good wishes and support from their side, they keep on surprising me. Friday was taxing and tiresome… Too many small stops, to then drive to San Juan again and stay with DeeVa until the pass hours are over is very demanding. The Mage is managing it gracefully, showing just signs of being sleepy. Me, well, being standing for long periods of time is not good for my legs because of my diabetes, so by Friday and Saturday have been using the chair with leg-lift at the hospital. I’m starting to really feel the strain of sleeping just a few hours, standing too much and not being able to keep within the right food schedule. The big problem is that if we don’t stay wary and move things, then who will? We can’t slow down, for Deedee’s sake. So far, God has been giving us strength and will. We keep on trusting Him.
Yesterday during the afternoon, and after finding out we needed another person so we could open the benefit account, we FINALLY were able to open one account for DeeVa’s cause. We did so at the Banco Popular de Puerto Rico, Catalina’s Mall branch, since it was the closest on the way to the hospital. LightShadow is making the flyer for the fundraising campaign… Well, actually she has been our spokesperson in the Western area, doing a lot with her computer and her public figure ways. We would have done very little without her help. Besides being a SuperGodmother she has also been a SuperFriend both with us and with Gruendel. We would be lost without you, LightShadow!!! I will post the flyer as soon as I get it.
So, the Fundraising bank account for Deirdre Medina is 041-473272 at BPPR. Feel free to make donations as you can, we will appreciate every cent. This account’s purpose is for transfer expenses to a hospital in the US (we think it will probably be in NJ as it is the closer choice). The medcard does not cover transfer or stay in any US hospital. So, any information on government programs or aid is very welcome. Some of the parents that has contacted us live in NY, so they should know the way around the main places we should contact. We need to know who to contact as soon as possible so we make arrangements in advance in matters of where to stay (RonaldMcDonalds house is a high prospect), Medicaid, and the like.
If you want to help run the fundraising, let me know. I know they will be doing things on Sabana Grande and Lajas, but I need people for Mayaguez, Hormigueros, CaboRojo, San German and if possible the area of Aguadilla-Moca-SanSebastian. Of course, anyone from elsewhere is welcome too.
So… to wrap things up… DeeVa is still at PICU, holding on… her g-tube/Nissan wrap surgery is healing up nicely, she’s been her happy self under the circumstances always asking for food and smiling at everyone that is not dressed in white… And we are working towards the goal of taking her to an SMA specialist in the States. God will keep on guiding us, and showing us the way.
We keep believing.