Sleepy Sunday

Madeleine is making little moaning sounds in her sleep right now. She fell asleep eating and I haven't managed to convince her yet that she's finished. She woke up around 11am to get her medicine, then took a nap. She's only woken up 3 times all day to eat. Don't worry, I already called the nurse to come out for an exam and discuss again how she's doing. Her heart rate and breathing are still both very steady, a very good sign. Her skin stays cool though she stays wrapped in a blanket and she's slightly pale, but overall doing pretty well. Her belly has some definite roundness just under her ribcage not unlike when she had the ileus which has us slightly concerned. The nurse is thinking that it could be one of the tumors pressing in her spine causing it. Dr Davidson will come here on Wednesday to see her so I'm sure she will also let us know what she thinks at that time. Madeleine has also starting using her right hand again mostly because she figured out that if her fingers on her left hand are unable to grasp, she can use the outside of both hands to pick things up. She is so smart.
Madeleine had several visitors on Saturday that also could have taken a lot out of her causing her to be sleepy. Annalise too spent most of the day in bed and not eating too much. That kid is always going 100 miles a minute so we know she's really not her best when she voluntarily spends the day in her bed. After a little Tylenol and cold medicine this evening she's back up and playing Minnie Mouse on the iPad so she must be feeling better. We took it all as a cue to stay in sweats today, hang around the house, doing laundry, loving each other. I love my family.

She Laughed

Daddy's birthday wasn't exactly a celebration but we were together with only family, no visitors or medical people. The best part really aside from sleeping in way too late was Madeleine was happy and comfortable. She made noises at Mickey Mouse, one of her faves, she smiled! And she giggled in her Mimi's arms while looking at pictures of Daddy, Mama and sister. Completely warms my heart to see her true spirit shine through her disabilities. Our girl is amazing!!!

Christmas Part III still to Come

The last few days have been good and challenging. Madeleine is doing ok; as we mentioned she has a different challenge every day but that seems like business as usual. Her main complications are with her digestion. Now that she has a regular routine of medications and a laxative and a stool softener are included, she's managing to do her business more regularly but not without discomfort or trapped gas pains also regularly. Thank goodness for heating pads. A new part of our daily tasks is to keep her tummy warm and massage the gas out, including Christmas morning and Big Sister was very good with her patience until we could open gifts. We felt so blessed to be able to give them so much this year, so much in fact that they weren't able to open them all! Annalise got stuck on a favorite toy and Madeleine fell asleep, so the gift unwrapping continued on the 26th :) super blessed. Oh, and they still aren't done- hoping to wrap it up by Friday, Daddy's birthday.
We also met with the hospice nurse finally. Jeff and I feel like we've managed Madeleine's care well on our own and because of our resolve to keep life normal, we're keeping it together surprisingly well, which we conveyed to our new support team. We have told them that our primary objectives for hospice really include on-call assistance for the just-in-case situations and ensuring Madeleine is comfortable by most means necessary; psychological assistance for Annalise, and the professional support when the inevitable occurs. We are extremely realistic about what's going on and because of that, we also quite certain we will fall apart when it happens.
It's the absolute strangest sense of existence, the unwelcome anticipation or unknown of "when," where life is almost suspended in the air like an acrobat. Yesterday was a good day mostly, and that is mostly defined by Madeleine being comfortable and happy. Unfortunately one of the first things to go has been her personality so we absolutely revel in her talking noises when she's feeling better. This morning she had a great deal of difficulty picking up her pacifier that she allowed to fall from her mouth and it truly upset her. We're pretty confident she's smart enough to know what she wants to do and is truly frustrated that her body cannot do what she wants. Since last week her right side had already begun to go loose, though she had good control of her left side. This morning's episode was her left hand now starting to lose control of. At least the hospice nurse is able to check her over and assure us that as of her exam, her breathing and heart rate are steady; while other things may be affected right now, we don't expect her to stop breathing tonight so to speak. In all honesty, we're praying for a peaceful, serene experience for her rather than something abrupt, traumatic or painful. This is the extent of our "preparation." We're just not ready to go there until we have to. While we will always believe in miracles, we acknowledge what we see before our very eyes, hold her close every night to keep her warm and feel her breath, to make her feel our love for her, to reassure her that we trust her, and look forward to the day we see her happy, healthy and pain free. This is truly a debilitating yet beautiful existence these days.

It's a Wonderful Life

We feel like George Bailey.

We've been home two full days now, and it's been nice. It's good to be home. Saturday night after discharge we had a wonderful surprise: dear, sweet friends of ours drove clear across town with armfuls of gifts for our girls. Just showed up on the doorstep, gave hugs, kisses and well wishes. We are truly blessed beyond our comprehension. Sunday Daddy went out in the crowds and finished Christmas shopping for our little lambs, while Annalise helped me take care of sister. We all climbed onto my bed and we talked to her, sang to her, made her smile, and tried not to squish her under great big hugs. 

Life is normal to Annalise, and we've been saying more prayers throughout the days. I want her to have a concept of heaven before the inevitable takes place. Our greatest concern next to Madeleine is how Annalise will feel, think, act and question. For both the girls we feel very strongly about life being as normal as possible and giving them the best Christmas ever as if we did not have the knowledge that we do have. We have had so many people reach out to us with prayer, well wishes, tears, offers to help- overwhelmed with support really, and we appreciate it so much. And we have also tried our best to remind everyone that Madeleine is still with us and continues to bless us, and we do not cry (try not to anyway) or mourn her now- there is a time and place for that and it isn't now. She is still our Madeleine Sunshine and continues to bring us so much joy, despite any physical effects we see, medications we give, extra things we must do for her. She's still our baby girl.

This morning we discovered she had stopped urinating, something we are aware could happen soon. She also hadn't had a BM since Thursday morning, both from the tumor in her lower back and the constant morphine. We got out the heating pad and began massaging her abdomen, something we had been doing sporadically anyway that was now quite necessary if we wanted to avoid the emergency room on Christmas Eve. Within minutes she had both movements, and we decided to get her into a nice warm bath to comfort her. I took her in the tub and held her between my arms and legs where I could still massage her belly in the water. After about 10 minutes, her system finally kicked in and like a tube of toothpaste, I was able to massage most or all of her blockage from her belly. Thank God our remedies worked! After a nap she had another BM and another nap, most of the afternoon in fact. The doc says she's ok just likely so tired from all the discomfort. When she finally woke up late and Daddy changed her diaper: SHE STOOD!!!!!!! After several days of not crawling or standing from the inability to do so, she stood. Jeff called to me from the bedroom to hurry, and I ran to see it with my own eyes, and I burst into the happiest tears in a long time. I hugged her and stroked her hair, and balled my salty tears all over her cheek telling her how proud I am of her. She is so amazing!!!

My very best friend also came today bringing items to help us and bless us, most notably her very good camera to help us capture what are soon to be very cherished memories. Our Christmas is shaping up to be exactly what we hoped for: precious, happy time alone together.

May God bless you and your family this Christmas.