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Wednesday, October 20, 2010

A Month To Celebrate!

Delight yourself in the LORD and he will give you the desires of your heart. -Psalm 37:4
This is a fabulous celebratory month for Rebekah!  I needed to share all of these milestones before I forget them!

I pray that this information about Rebekah continues to bring others closer to God, provides hope for those facing the painful road of carrying a trisomy 18 child, and makes those in the medical community question the text books and outdated/skewed statistics about children labeled 'incompatible with life' before they are even born to this world.

Medical/Health-Related Milestones
  • 10/21/10 - Rebekah is 18 months old!! Hurray!!
  • It has been a little over a year since Rebekah has been admitted to the hospital for an illness! She did get RSV last February, but we managed her care AT HOME. Since then, she has had a few other illnesses, but is getting better and better at fighting them off and recovering quickly. None of them required hospitalization overnight!
  • She is becoming more and more stable. Even when she gets a cold, we are only minimally needing oxygen supplements for her.
  • Despite her trach and diagnosis of being likely to aspirate, she has NEVER had pneumonia! Also, despite her trach and the advice not to orally feed her, we have been successful at giving therapeutic amounts of food with no signs of aspiration!  In 2011, we will be working on trying to get these feeds up to an amount that will decrease what she received by her g-tube.
  • She has been cleared by the cardiologist and only needs annual checkups. The nephrologist has cleared her from the concern of chronic hypertension. She has no pulmonary hypertension and, despite her horseshoe kidney anatomy, her kidneys seem to be functioning properly and doing their job well. Despite her neurological issues, we are still blessed with no seizure activity. Her health is pretty amazing given all of her anomalies.
Developmental Milestones
  • Rebekah is rolling from her stomach to back, and back to either side! We think she can roll all the way to her tummy, but she HATES being on her tummy. Just seeing her roll side-to-side is quite an improvement in her mobility! It allows her to scoot around and rotate her body when lying on the floor.
  • She is now weight-bearing on her legs!
  • She is giving open-mouth baby kisses!
  • She plays peekaboo with her eyes by squiting them shut then peeking out behind those long beautiful lashes. She doesn't use her hands much, so we will take the handless form of peekaboo!
  • She can sit for about a minute before falling over. She does not have the reflexes to catch herself, which means sitting requires much more balance. We are diligently working on her arm and hands weight-bearing and hoping to see her more actively catch herself in the near future, which will lead to longer and more consistent sitting ability.
  • She is developing a sense of humor and finds it amusing to push things off her tray and watch everyone retrieve stuff for her!
  • She is developing clear likes and dislikes, showing her opinion, and clearly demonstrating people preferences and stranger anxiety. She is developing a lovely toddler attitude!
  • She definitely focuses on people and things she is interested in. She will watch her favorite videos over and over with much intensity.
Other Celebrations
  • We have had nursing care for Rebekah for one year now! I attribute her health and development to this!!  Having her Nurse Becky here for her 5 days a week keeps her healthier and gives her a lot more therapy time than I could ever manage on my own with all of our boys!
  • When we were expecting Rebekah, we made funeral plans before she was even born. Those plans have been long forgotten, and we actually just went through the process of redoing our wills to plan a future for Rebekah including a trust fund that would protect her from any income and asset assessment that might cause her to lose her Medicaid Tefra benefits. The process of moving from a 'death' to a 'life' view has been amazing.
  • Rebekah continues to be a blessing to many and a constant reminder to us that miracles do still happen!   We thank God everyday for the honor of caring for her.
While Trisomy 18 may be a diagnosis, it is NOT a prognosis. Each of these children, created like us in the image of God, deserve a chance to love and be loved. Their purpose here on earth is not to become rich and famous, it is to teach us about humanity, compassion, and grace.

This video demonstrates how Rebekah (17 months) interacts with her brother, receiving and giving affection. We captured some of her first 'kisses' in this video - enjoy!

In this video, Rebekah (17 months old) is just starting to initiate weight-bearing on her legs. It kind of surprised us how this behavior all of a sudden emerged. We are in the process of reviewing standers for her and hope to order one soon so she can keep working on this skill!

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