Last night, I slept pretty good only waking once to be fed. Joshua likes to wake me up in the morning with big wet kisses....he loves me.....and man do I love him. Mom isn't too fond of Joshua waking us up but it is kind of hard for him since he is an early riser and we are sleeping in the living room....what else is a big 5 year old kid to do when he wakes up and sees two sound sleeping playmates???...wake 'em up! Mom just wants to sleep but Joshua helps us start our day early. It isn't so bad for me to get up that early since I sleep all day but Mom on the other hand doesn't sleep much so I guess I understand.
Well I spent most of my 80th day sleeping while traveling and at the hospital....for my test......we went to my ultrasound appointment. We got there 30 minutes early which apparently was too early....our appointment was at noon but we didn't get started until 1! Now that wouldn't have been a big deal regularly BUT since they had to see my insides, I couldn't eat for 4 hours prior....but seeing they were an hour behind, that meant I had to wait over 5 hours to get that goodness in me! I was NOT happy! My tummy was roaring. But then Miss Catherine measured my gallbladder and then let me eat for the rest of the test.....which took some time....it's not easy finding all my little parts especially since they are not necessarily where you would find them in a non-trisomy 18 baby. Miss Catherine was amazed at my tubing that connects my tummy to my small intestines.....pylaral-thing-a-ma-bobber (that is the official name :) .....she said the wall was sooooo thick she couldn't believe my food traveled down....she kept asking if I spit up all the time....I don't and she wouldn't have believed Mom and Dad if she hadn't seen the food I ate travel through with her own eyes. I am made soo different and complex that it is only by the true work of God that I work and am alive today.....You think about that and think about how complex and perfectly made we are....sure we all have our differences, yet we are here functioning and it is all to His glory.
We have yet to get the test results. Miss Catherine couldn't say for sure, but there were not many signs of problems she could SEE. This could mean that my problem is more on a cellular level that we cannot see on an ultrasound....and with me being T18, there is a good chance this is the case. BUT we will see what my wonderful pediatrician says tomorrow.
My butt is still raw because I cannot stop pooping....I'm not sure what this is all about (liver issues?)....but every time I get a new diaper, I make my mark. So, regardless of all the protectants and healing meds Mom slaps on there (thanks to all of you for your special magic butt ointment recipes), it just does not have time to heal in between. We think it is making progress but it still hurts me and I let Mom know.
I went and slept the whole rest of the day waking for a bit here and there. I am pretty sure we ended up at Gramma & Grampa's house.....I kind of remember waking for a quick moment and seeing Gramma and then later I gazed at Grampa.....but other than that, I was in dream world. Now I'm home under my fabulous zebra print waiting for sleep to come again after I finish updating you all.....so it's off to bed for me and Mommy.
Hope to let you all know the results tomorrow.....keep praying.....it's all in God's hands.....His grace is sufficient.
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11 comments:
Hello Sweet Jacob - I've been awaiting the report on how you're doing. I love your comment that "it's only by the true work of God that you are alive today" . You are an amazing example of how complex and perfectly made we are...sure we all have our differences, yet we are here functioning and it is all to His glory.
I continue to claim the above words on your behalf. Stay strong and rest well, to you and your parents. With love - Lynne B.
Thanks for the update. I pray for you and your family daily.
80 days!!!!! Way to go Jacob, and thank you God!
Praying about the results.
His grace is indeed sufficient.
Many prayers for you all.
Little Jacob!!! I am a long time reader but it's my first time to comment. I check up on you at least once a day. You are loved all over this world! I hope your little bottom starts to feel better soon. I don't know if mommy and daddy have tried, but in the NICU where I work, we are told to absolutely never remove the creams used to help heal your bottom. It sounds really yucky, but if you just make sure you have a thick coat of the cream of your choice on your bottom, then wipe away only what poop you can without disturbing that layer of cream, your little bottom will heal faster. I know...it doesn't seem right to leave poop mixed in the cream, but it does work! Good luck! And we are praying....
It takes my breath away to imagine how uniquely you are made and how powerful your God is! I say to people in doubt a lot, "Your God is the breath in your lungs when you can see him nowhere else." He really IS the breath in your lungs, sweet Jacob! You are a beautiful little missionary. I see the purpose in your eyes - there's no hiding it, little man. :) Be nice to Mommy today.
We will pray... I am so sorry about your little bum. Hopefully it will heal soon.
You are such an inspiration to us when you say "His grace is sufficient." His grace is sufficient! Glory to God!
Love ya,
The Booth family
www.chrisandrandi.us
All together now...
"YOU MAKE ALL THINGS GLORIOUS"
I think my little Joshua has been reading your blog on the sly because the past three nights he's been keeping me up. He's only 3 weeks older than you Jacob. Joshua's brother also likes to wake him up with hugs and kisses.
We'll Keep praying.
Jacob sorry to hear about your poor bottom..that's no fun!! 80 days you are something else..
Ok this is my third try! I am not very computer savvy.
I babysat for 40 some years in my home and one of my Mothers gave me this hint. Take regular floue, put it in a pan, put it in the oven and heat it til it is scorched. Then cool and use like baby powder. Sounds really strange doesn't it, and it looks awful, but from my experience it works. Barb in NYS
Baby Jacob--I wanted to post my suggestion for a cream for your bottom. My family has used resinol for years. It is very thick and you almost have to have a bath to get it off. It stays on better so your bottom will have time to heal. It is sold over the counter at Wal-Mart but the pharmacist keeps it behind the counter so you must ask for it. I hope this helps. Keep growing and stay strong!
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