I made the bus again today. :) I got up and rode for 42 minutes on the trainer. Yeah!
Ok, the help part...
Those of you that have a higher being that you pray to for help...could you please do that today and this week? My sister (read about her story here) is not due with her first child until Jan 4th. However, she had an appointment yesterday and the amnio fluids are not at an acceptabale level. She goes back in to be checked tomorrow, if still down...induction. Reality. Jeremy will be here. Jeremy, the Trisomy 13 baby, that we have been praying for since week 19.
I have been asked many times what do I pray for? Strength to accept everything that is happening. Peace with all the decisions they are making and have to make. Hope for the future. Belief that their Lord is handling everything. Knowledge that they are not alone in anything that is happening "to" them or baby Jeremy. Joy that they have all the family they do around them. Grace.
Thank you. I will keep you posted.
Peace!
6 comments:
I'm sending my best energies to you and your family in these next tentative days.
My prayers are with all of you. Hands down 200%. And I absolutley DO accept creepy internet friends on facebook.... I am HONORED!
Sending prayers your families way,
Blessings,
mom to Natalia full t13,
We will be praying for your family.
Anne
mom to Samue(Trisomy 13 and 10 years old)
Keep the idea in the back of your mind, of caffeine as a possible way to help with the apnea that is such a common occurrence. Maybe, if that turns out to be a problem for Jeremy, your sister and her husband can ask about that as one possible consideration for treatment. My daughter's apnea has always been very severe, but to this day she takes caffeine. It can be given orally (she has a feeding tube, so we just give it that way), and it is a miracle "drug," in her case.
I mentioned this because I read the part about the B, breathe, on your sidebar.
Oops - I'm tired. I meant to say that her apnea has always been severe, but it's really well controlled with the caffeine. We keep her on a pulse ox so we are alerted of times when she needs a bit of repositioning or stimulation, but it's like almost never, as long as her caffeine level is in a good range. We do run a bit of oxygen near her face at night when she sleeps, too, because she tends to have some dips at night, otherwise. It's become so NOT the main focus of our lives, because with the caffeine and the pulse ox, it's a managed problem and not something to fear every moment of every day. I just wanted you to have the information, because it's such a common feature of babies with T13 and T18.
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