Elijah's Heart Journey: August 2015

Tuesday, August 25, 2015

Kindergarten

Noah is now in kindergarten!!! Where or where has the time gone? He is no longer a baby... no longer a toddler... he is now a boy. Wow.

Sunday, August 16, 2015

Cardio Update

First let me say that Elijah is doing really, really well. Dr. Sklansky is watching him very closely but so far so good. He went for another cardio work up on Friday. His lungs continue to look clear even after going back to a full fat diet and weaning the Sildenafil. He has been getting bi-weekly xrays along with blood tests to measure his INR levels. He is on Warfarin, a very strong blood thinner, that must be monitored regularly. The plan at this point is to slowly continue to wean the medications over the next 6 months. He is still on three very potent diuretics. As of Friday, we are very, very slowing starting to wean one. Elijah has lost a substantial amount of weight and now wears 12-18 month clothing. We are trying to fatten him up and we continue to try to get him stronger.

As for his spirit, he has returned to the happy (and sometimes very demanding) three year old that we all know. Noah is much happier now that he has his brother back. The two of them are the best of friends and he worst of enemies all at the same time. But no matter what, they want to be together.

I returned to work two weeks ago and Elijah went back to preschool. Noah attended a few days with him. Elijah is struggling with the transition to going to school without Noah. Noah will start kinder on Tuesday. Dion and I spent a large part of yesterday getting all of his school supplies and purchasing uniform shirts. I can't believe that my baby is going to "real" school. He is no longer a baby. I am so proud of him and at the same time, I would like time to stand still. It is moving way to fast. All of that to say, I am so very grateful to be here, in this moment, with my little family in tact. And not just in tact, but happy and thriving.

Saturday, August 1, 2015

San Diego

Although we didn't have much of a summer, we decided to make the most of what we had!

Having fun in Old Town.

Legoland Fun

Making friends at the San Diego Zoo.

Enjoying the Orange County Fair.

Elijah got to feed a baby cow.

Good old fashion fun in the pool.

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The Chosen Mothers by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy." "Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side." "And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."