A Slice of our life before 9am: Ten Beautiful Things

1. I wake up before Ellie. It’s 6:20am. The house is quiet and filling up with early morning sun. I feel good. She slept through the night. I peek in at her. Her arms are out wide. Her breathing is steady and the deepest I have seen it in awhile. She looks content. I think I can actually hear her growing. There are no dark circles under her eyes. It was a good night for her too.

2. I tip toe downstairs and measure out her meds; Protonix, Cisipride, and Zantac to battle her reflux and Depakane to keep the seizures at bay. I drink water. Every day I get a bit dehydrated because she keeps me hopping. I forget to look after myself. This morning I drink two 10-ounce glasses worth. My body thanks me. I am bargaining with myself in doing this because I know that for every cup of coffee I drink I need to replace it’s diuretic effects with two cups of water. I am multi tasking – quench the dehydration of the night and get a jump on the two cups of coffee I will drink later.

3. The coffee pot sputters and gurgles and spreads its aroma across the room over the unfinished floor that is soaking up the morning rays. I take this time to contemplate and take some deep breaths to get ready for the day. I am again grateful that she slept through the night. My contemplation is distracted by two things: the fact that I know I only have one or two moments more until she is awake and needs my complete attention and thoughts of Dave. He is out of town. Working hard in the middle of some industrial wasteland, a long way from Boston and sunny LA. He had to leave just as Ellie got home from the hospital. The first night he was gone she woke up at 11pm. Nothing would console her for 2+ hours because she wanted to snuggle up with Dada. Mama just would not do. A tribute to how great a dad Dave is. That makes me smile. There are so many people in Ellie’s life that she is far away from and when she sees their picture she let’s me know she wants them. She puts her thumb on them and says “Uh!” and looks around like the person is hiding. Very cute. Heartbreaking.

4. She is awake. I can hear her tiny voice on the monitor. She is babbling away mostly vowels and very few consonants. But I know she is asking for me. I go in. “Hello! Oh, it’s so good to see you.” She smiles, eyes half open, kicks her feet and waves her arms in dystonic reverie. I pick her up. Bring her down stairs. We land on the couch. She immediately starts looking for toys to play with. I tell her good morning. Ask for a good morning hug. She obliges by burrowing her face into my shoulder. I sign thank you. She scrunches. Not getting toys fast enough. She puts her right arm over her eye. Her whole body scrunches inward. I ask her, “Are you grumpy?” She looks at me. I hold out two hands. Wave the first hand as I say, “Is Ellie happy?”. Then I wave the second hand in front of her and ask, “or grumpy?”. Ellie picks grumpy. I say, “That’s ok. Sometimes people get grumpy in the morning. How about you sit in your Bumbo chair?” More scrunching. I know she wants to play from her favorite platform, mama’s lap. She is too heavy to carry back and forth to the kitchen so I need to put her in her Bumbo. There she can be upright, clear her fluids and stuffy nose as well as play. I put her in the Bumbo anyway. As soon as I do I ask her, “Do you want to play Globe with me?” At this she squeals, LOUD, "EEEEEEEEEEEEEEE!". She has this maniacal look in her eyes. Her eyebrows arch in perfect triangles. The squealing continues only to be interrupted by dystonic arms flung out to each side. She throws her head side to side. This is then followed by Ellie pushing up with her feet, which makes her bounce a little up and down in her seat. She can’t move and vocalize much at the same time. After this she stops moving and squeals some more. It’s very cute.

This is what Ellie does when she is excited and happy. It’s a tremendous way to say YES!

5. I become Ellie’s hands and arms so that we can do some imaginary play Ellie style. Her Pooh toy has to dance on top Globe about 500 times. She grabs a cloth napkin nearby and tries to put it over Pooh. This indicates she wants me to cover up Pooh so she can find whom that is dancing a top Globe. We do this many times to many squeals of delight and dystonic arms and head. Then she reaches for her Doodlepro saying “uh”. I get it. Place it in front of her. She reaches, grabs the pen and moves it toward my hand. I ask her, “Do you want to spell things on Globe?” Smile and another “uh” while leaning forward. I ask her, “Ellie, where is this?” I have written AFRICA on the Doodlepro. Before I am even done writing it she is turning the globe around to find Africa. She puts her whole hand on it and looks at me with an expectant smile. I praise her for finding Africa. She then wants to spell Africa Ellie style. We do this for each continent and the poles and the equator. She has found a new part of globe and puts her thumb on the north south east west compass. She looks at me and says “ah” with her right eye brow raised. That’s her facial reaction when she discovers something new. It’s so cute. I tell her about the compass. Then she puts her hand on Doodlepro. She wants me to spell the word compass. I do and she is delighted. She then puts her thumb on each letter of the word. I read each letter she touches. I go at her pace. “C. OOOO. MMMM. P. A. S. S!”

This is how Ellie learns.

6. In between all of this I have given her Protonix, then 20 minutes later Cisipride. Now it’s time to change her diaper, get dressed and get her AFO’s on. She tolerates all of this because I have propped her up on a Boppy. Big Teddy bear is holding up Doodlepro for her. Raggedy Ann is keeping her company. She is examining Raggedy’s red hair and pulls the pen from the Doodlepro. I know she wants me to write. I do. I write Red Hair. Ellie is delighted. We talk about Raggedy’s hair, face, clothes. We look to find where it says "I love you" in a heart over her “heart”. It is new that Ellie is more interested in these non-musical, non-mechanical toys. She takes Raggedy in by both hands, one on each side of her head and starts to babble to her. This is new too, using both hands so well to hold a toy up. It’s major progress. I am happy to see her doing imaginary play all on her own. I ask her, “Is Raggedy your friend (I sign friend as I say it), your girl friend (signing as I go)?” Big cheeky grin and then back to babbling at her girl friend. Getting dressed can take 20 minutes. Ellie looks happy. She has stopped playing and is looking at me contented. I ask her as described before with my hands, “Are you happy or grumpy?” This time she picks happy and smiles. I say, “Oh that’s great, me too. Are you hungry?” Big dystonic reaction. I ask her, “Want to eat some cereal?” Her reply, “Ah” reaching for my hand wanting me to pick her up.

7. I do and hold her close to lift 24.5 pounds of her. She does not help or hold on. She fearlessly wiggles to turn round in my arms to face forward to see where she is headed. I tell her we are going to the table to her big chair (kid kart express). That she can play while mama makes her cereal. I strap her in her chair and put a blue non-slip mat in front of her on the table and ask her which toy she wants by giving her a choice of two. She picks her Sing and Discover Piano. She sits facing me as I make her food.


8. I prepare her breakfast, organic multigrain instant baby cereal in organic rice milk, and my own, Pete’s Arabian Mocha Java coffee and toast. She plays this little rif that comes if you press the elephant button a couple of times. She knows I like it because I always sing it back and tell her it’s jazz. I echo it back to her now to her delight. She plays it again. I sing it back. Then she plays another song that I sing with the toy from across the room. This is her way of communicating with me. I wonder if she has a future as a DJ.

9. I bring the food over. The struggle begins to get her to eat by mouth. I try to gently do her mouth exercises. I say, "Warm up Ellie's mouth!" Even with the sound effects and trying to make it fun she is having none of it. I ask her if she wants to do them on mama. She grabs my face for a moment and then tries to sit up on the table. She loves the “wood” table. Wood and table are new things she has learned and is far more interested in them than eating. She is hungry but just won’t focus on the food. She is practicing all manner of avoidance. It’s hard. It’s frustrating and sad because last May she was eating most of her food by mouth. Now she refuses all food. I think I must take her to some sort of feeding clinic. I give up after 20 minutes and give her the bolus through her g-tube and her Depakane with it. We read and I eat my toast and ask her if she wants some. Nope. Sigh.

10. Out the window I see a glorious sunny February day warm enough to go for a walk.