It was Yolandas birthday... not much of a party but she had some fun in the midst of it all.
This is how we set Charlotte up each night. She refused to use the nose oxygen prongs so we made a little tent and hooked up the tubes to blow by her face all night... this was far from peaceful for any of us! The oxygen also has humidity bottle hooked up... so every once and a while the tube drips from condensation, right onto her pillow or face. Then if she rolled facing away from the oxygen she would not get enough into her system and the monitor would BEEEEEP. This was every night, then whoever was spending the night had to get up, adjust the hoses (or the sleeping girl) try to get the oxygen levels back up.
Here is the birthday girl, she got to open a couple of gifts and daddy took her out to get "THE" new movie (Disney's Tangled.) She has been talking about Rapunzel even since we went to see it in the theater.
Charlotte watching the unwrapping, not much energy yet.
Some very enthused "Tangled" viewers... the camera just didn't capture the excitement very well. Rob especially was on the edge of his seat!
At least Charlotte started eating a little more. Everything had to be cut tiny and dipped in honey for the princess for a few days. You can see my finger splint, I cut the tendon over my knuckle and now it needs to be splinted for 6 weeks... then they will see about surgery. (I had a cheese grater accident back in December- so lame!)
This was the first day Charlotte was actually up, she sure had fun having Yolanda to play with.
She was not stable enough to stand or walk yet, she had been laying down for a week. We had her up once but it was greatly protested. Yolanda and I tried to do a puppet show outside the door to get her to stand with Rob to watch, but she was pretty shaky.
Although I don't particularly like it, I feel like this last picture really represents my life right now. Sitting. Waiting. Not much going on... The picture looks a little washed out, appropriate for how I currently feel. Charlotte's hooked up to her hospital pump, hooked up for how long we dont know- we will never know. There is some food tucked in there too. We are relentless at getting her take a bite of anything- there are snacks tucked in the bottom of my purse, diaper bag, truck console, upstairs, downstairs. There are some stickers... this girl loves stickers, especially puppies and kitties... at the end of each night I pick them off of everything, clothes, furniture, toys, my washing machine is lined with the ones I have missed. Its fitting that this picutres cropped tight too, there is nothing going on outside of this scene that we are able to focus on right now.
thank you for the update Allison. We do not know each other but for some reason your story has greatly affected me. Possibly because I have a 3 year old and cannot imagine what life would be like if something was wrong with her. I am so sorry to hear that you are at a very low point in your life right now. I cannot even imagine what you guys are going thru but I can only offer you comfort and hope that you know that there are lots of people out there who are rooting for you and your family and praying for all of you. Much love and blessings.
ReplyDeleteI understand how small the world seems right now, and you can only focus on getting from one moment to the next, one step or one breath at a time. Thinking of you guys often, your family is in our prayers. Thanks so much for keeping us updated.
ReplyDeleteHugs to you all from the Fahlman's
Thank you for posting an update. We are following your blog & praying for your family. Even though I've never met Charlotte, I think of her every day. I hope you know that you have lots of people rooting for you....
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