That's right folks, we're still at home and were not re-admitted. Praise the Lord!! We've had a few issues with the feeding tube, but have been able to keep it in and continue to give her meds and feeds through it. Please pray that this tube does not kink or get stuck against a wall again. We like to have Hope at home, even with the sleepless nights!
Today a nurse came to the house to do our assessment for Shawn's insurance coverage at work. She was pretty sure we would be approved, but we won't get an answer until next week. We're hoping to be approved for at least a couple of nights each week. I can't imagine sleeping for 8 hours straight at this point! When I got up last night, I would sit in Hope's room and push snooze on my cell phone every five minutes. I was actually falling asleep between the alarms! That shows you how tired I was, as I couldn't stay awake for a full five minutes to watch the feeding tube.
Hope was pretty high maintenance today. It's hard to get things done at times. Shawn's mom spent the day at the house with me. It allowed me to get some laundry done, organize the pile of mail on the counter and write some letters of my own. It felt great to have a more 'normal' day. Hope was wanting to be held most of the day, so Oma took a shift of cuddling while I did some house work during Sadie's nap. I should have been sleeping, but eventually you do have to clean up your house.
This evening, as Hope slept next to me, I worked on her scrapbook of Hope notes. We have almost 2 scrapbooks full at this point. I'm willing to buy a third book if you're still planning to mail your Hope note. I would love to receive them, as they really encourage us on those rough days and remind us that we're not alone in this. They are such a testimony to the power of prayer. Feel free to take a look if you're ever at our house.
Hi Amy, I am following your blog of your family's journey and carrying you in prayer.I discovered it through a friend. I hope it is not an intrution? I recognize and can empathize with some of your experiences. Our fourth child was born with Down Syndrome and a few difficulties associated with it.Thankfully his heart related one was very minor and did not require surgery. A help for you that I haven't seen you mention so I wonder if you are not aware of it yet is Calgary and Area Child and Family Services Authority-FSCD Program.(Family Services for Children with Disabilities). Seems like at this point your family would be able to benefit from support they would offer.We had a care giver come in to our home to care for our other 3 children and do household chores while I cared for our son before and after bowel surgery at two months.I can totally relate to the pumping and feeding schedule and sleep deprivation.There is no fee for these services and a social worker will come in to your home to find out your needs.You have so much to do so you don't have alot of time to spend avocating for your family's needs.Honestly let them see and hear why you need help ie. if relatives live far away so can not help, another little sibling who needs you too, and a spouse who you need to be able to have some energy to care for and be cared for...even if it's just cuddling on the couch and falling asleep there. I hope this of some help.Our God has been faithful and things get easier.Our son is a joy and loves to glorify God through worship...wishing God's peace and rest :) Judy
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