Double Zeros

"Mommy likes us to match when we can, Daddy wants us to be Seahawks fans."

Last night for the nurses :(

Well, it's Thursday night (Friday morning) and Allison's follow up with the surgeon went well and there really isn't a need to keep the overnight nursing!!! We havent had to use the suction machine in over a week, which means that she is able to transfer things from her esophagus to her stomach without a problem. Fantastic news ! Now comes the part where we have to figure out how to get the adjustable bed into her bedroom and listen for her in the middle of the night again. We've kind of gotten used to not listening for her since the nurses have been there and she's been out in the den. It's good that Jeff has the next couple days off to help get things figured out.
Allison is almost back up to pre-surgery weight, and appears to have grown some more also. We're still trying to figure out why she's not sleeping thru the night on a regular basis and why the increased doses of her meds didn't help that problem. Guess it's back to the neurologist to see if her seizures are increasing or if she's just built up tolerance to her meds.
Amy has still been really, really tired even after a visit to her cardiologist and an increase in her pacemakers rate(up to 70 bpm from 60 bpm). There are a couple of schools of thought floating around about what the issue could be. Maybe she's in recovery mode from being on high alert for 2 months with Allisons issues, maybe she's going thru a little spell of depression, or maybe it's an issue with her heart. The next thing we will try for her is to turn on the reactive portion of her pacemaker and see if that helps. That mode reacts to movement and automatically bumps the rate up to an exercise rate. Keep her in your prayers these next few weeks.
Keala is starting to pull herself up from tummy to knees to standing! It wont be long and we'll be chasing her all over the house. She is eating like a horse and growing like a weed! Can't believe she'll be 10 months old in a week or 2. She's learning how to use some sign language and signing "more" and "finished" and "eat" and "milk" and using them on a pretty regular basis. That and she's already using a couple words too. She's an amazing little girl!

Thursday

The Dr appt went well on Monday, the doc recommended a couple of changes to her feeding schedule and also a decrease in the acid blocker medication we've been giving her. He said everything seemed to be going well from a GI standpoint and will see us back in a few months to follow up with him. She's been kind of lethargic and acting like shes just not feeling really good the past few days, but hopefully will feel better soon. The neurologist got back to us today and we are increasing her anti seizure meds to try and help her sleep through the night which has not been happening for the last week or so. (maybe whats causing her to be lethargic during the day) Hopefully we'll see a change.

Dr's and nurses

Well, it's Sunday night and the nurses from the new company have been at the house every night so far. Even though the nurses are different every couple of nights, at least they are there. They have been a great blessing. Allison seems to be improving, but we're still dealing with constipation issues from trying to pack on the calories and help her gain her weight back. We have a follow up visit to Dr Zhang (the GI doc) on Monday and we'll hopefully get an idea of where she's at on the GI side of things and maybe get some ideas to help her stop gulping so much air. It may be that she's just accustomed to using that as a coping mechanism or it may be that she's still having some reflux, so it'll be good to get his opinion. Our surgery follow up is the 23rd of Jan. Thats the day they will decide if she's sufficiently healed and the swelling has receded enough to rule out another corrective surgery.
Amy is feeling much better these last few days and Keala has actually been allowing her to sleep most of the way thru the night. Amy and Jeff were able to spend some alone time over Jeff's weekend (Thank you Aunti Hannah!!) and were even able to go to church Sunday morning. What a blessing!
Thank you again for all your thoughts and prayers

Thursday night

The new company providing us with a night nurse is fantastic in comparison to company #1. They have already covered the rest of the schedule thru the 24th except for one night. They seemed much more on the ball and much more in depth with their questioning also. Allison has been up and down over recent days. One day she'll feel great and the next, not so good. She is gaining weight however and appears to have kicked the ear and throat infection. Keala is still a bit under 20 lbs (50th percentile) but is over 30 inches tall (95th percentile). She is such a bundle of energy it's no wonder she's not really heavy, she works it all off playing and growing.

Amy has been not feeling well for the last week or so and is was really, really tired today. Thank the Lord for Jeff's days off Friday and Saturday. We will be able to get Amy some good sleep and hopefully that will help her feel better. Hopefully we can also get some grown up alone time also. We really need to spend some time just the 2 of us and remember that before the girls there was just "us"

best laid plans

Well so much for our night nurse! The company that we are paying to provide us with a night nurse has now dropped the ball 3 nights in a row. So we decided to fire them and have to start at square one with a new company. So needless to say we are a little frustrated and not well-rested. We are very hopeful the new company can gets things rollin and get us set up by Wednesday. Pray for Amy, she is not feeling very well and the stress of dealing with both girls at night without Jeff at home is not helping that.

Graveyard shift.. here we come

Well today was Jeff's last day of dayshift schedule for at least a year ! (if not longer) Sunday night starts graveyard til April. Hopefully we'll have reprogrammed Keala by Sunday night to not wake up in the middle of the night and refuse to go back to sleep until she's in moms bed. If that happens, Amy will have a much easier time sleeping and hopefully keep herself (and the girls) healthy. Our night nurse will last thru the end of January and our prayer is that Allison will have healed significantly by that time and will be able to make it thru the night without needing to be suctioned.She does seem to be improving day by day except for the slight ear and throat infection she's working to kick right now. We've tried to keep bugs out of the house but a couple people at Jeff's job have come down sick and he may have brought a bug home with him. Hopefully the antibiotics will kick it.
Prayers for continued rest and healing and a smooth transition to the new shift.

Happy New Year and much love to all!

Night Nurse

The night nurse came the last two nights...even though she's here it is hard to reprogram ourselves to sleep through our child's noises. She is a nice lady, we will be meeting the other one next week.

The new year is here and we are praying for good health for ourselves and all of you.