Yesterday Noah’s catheter was taken out to see if he’d urinate on his own or not…though he was able to empty about 15cc on his own, that certainly isn’t enough to empty one’s bladder. He was straight cathed twice, once successfully, the second took several tries. All this to say, after a very frustrating debate about straight cathing versus a permanent catheter with the night pulmonary team (Emily even chimed in and said, “My mom doesn’t believe you guys believe her!”), the UROLOGIST (yes, we value the opinions of the specialist in the area of the specific BODY PART-let’s stick to the parts we know…) came to say that she’d recommend a permanent catheter for another month so that Noah’s little weenie doesn’t get damaged and irritated with continuous entry. No, she didn’t use the word, “weenie” that’s edited blog talk.
In the meantime, Noah had more acupuncture yesterday and it continues to bring about positive stimulation. Tomorrow we’ll turn Noah on his tummy so that Doc Julie can work on his meridians that focus on the bladder function. Noah has been opening his eyes more intermitently, he moves both thumbs now and his left ring finger, and the nurse the other night (an incredible woman who became a nurse because her son had a cancerous brain tumor-he’s cancer free now, Praise God!!!) witnessed a facial expression on Noah which she’s never seen in her month and a half of caring for him! So, while we wait for the bureaucratic process of seeing whether anyone wants to go out on a limb and help our son with a treatment no knows will work or not (who would have thought moldy cheese would lead to penicillin? And I’m sure the first lobotomist wasn’t a popular person…) , he’s working his tail off to show us little signs here and there. Any time I smother him with kisses, his little thumbs wiggle! It may seem small to the rest of the world, but it’s our little treasure!
I’ll check in again later…I’m taking Em to a play date and running a few errands. For those of you who don’t know, I’m “homeschooling” Em for the remainder of the school year. The reason it’s in “quotes” is because it’s preschool…but anyway, I just wanted you to know. Jason and I have prayed about it quite a bit and with all that’s going on, I wanted more one on one time with Em, which we weren’t getting taking her back and forth to school. So, any locals can meet up with us on our field trips around the metro and she’ll have more time for play dates. Until later…
Awww Noah is showing you how much he loves, how special that is.
I have a son with special needs. Having him has made me appreciate all the “little things”. God has used him to open mine, and my families, eyes all the more to the glory of God and his miraculous creation of our bodies. Continue to rejoice, because these finger wiggles are not a tiny thing at all! It is God showing his glory and majesty through your son to you:)
Thank you Father for your gifts!
There’s no doubt Noah knows his mother, and responds to you. I’ve seen it. He definitely knows he’s well loved, and it seems clear that he’s doing his best to expres his love back to you.
I’m so glad you’re persisting and pursuing every angle. He knows you’re fighting for him.