Thursday, September 9, 2010


Life was so full of doctor visits and  new  home school year set up, sports and all that, there was truly no time to write anything  but I kept thinking "OH  I want to share this on my blog!!"  many times over.
Our new school year has begun, with the addition of  Alpha and Omega  Switched on School house and Monarch programs in place of and in addition to, some of our tried -and-true Wordly Wise 3000 vocabulary curriculum, Teaching textbooks and Scott Foresman mathematics for the younger grades.
I am loving the Switched on School House and Monarch programs! The website allows me to set up the school calendar, asign the work to each of my students and to get the end-of-day progress reports on each one from the master curriculum set up. NO GRADING, no lesson's all done for me!! A last minute doctor's appointment for Daniel with the pediatric gastro-surgeon caused a bit of turmoil since it was out first day and I, the teacher was absent from school , but my wonderful students plugged into even the new online material and had a great morning without me!
Daniel. His shunt placement has gone so well, has apparently pulled all the excess fluid form his brain cavity, and has resulted in much less irritability than before he had the shunt put in! We've seen a couple of mile-
stone activities, but alas, only once or twice per "milestone". They were precious, they were unexpected and if they were one time events, we did share them with Daniel and we loved them. IF they were "unintended" that's OK , too. When I cuddle my "forever baby" and hold him close and watch his face relax into the most peaceful face on earth, what he "does" or does not do fades into nothingness. All he has to do is BE. Anything else is what the Cajuns call "lagniappe" and it means " a little something extra". Every morning that Daniel wakes up, irritable or placid, barfy or not, is Lagniappe. Babies with his diagnosis who live to be even one year old are rare. I am praying with a dear friend whose daughter Selah shares Daniel's diagnosis and whose condition seems far more grave than Daniel's right now. What we both know in a newer and deeper way is how precious every single second of LIFE truly is. Our babies' days may be numbered far more clearly than those of our other children and we cherish every moment of each one as precious "Lagniappe"
Our Pediatric Gastro-Enterology appointment was Tuesday and I had hoped we'd get a surgery date. The upshot was because Daniel needed more than just the feeding tube, this doctor referred us to the Pedi- G-I surgeon for a consult. WOW!!! Even the young doctor assisting  the senior one was super- pleased when he came back to tell us that the surgeon wanted to see us the NEXT MORNING! So yes, we interrupted a perfectly well -planned first day of school for a surgeon's consultation. It was all OK!
Daniel will have his gastrostomy ( Mickey button for a feeding tube) surgery on October 1 and along with it a procedure to help tighten that sphincter which causes him such terrible reflux all the time. The surgeon told me it would be pointless to do surgery for a feeding tube if Daniel was still going to reflux everything back up. Amen. He was so very kind and yet realistic about Daniel's diagnosis and the "what-ifs" of a possible failed surgery. (Yes I am very aware that surgery doesn't always "work") and he didn't want us making Daniel's life all about surgical interventions and short term fixes that would really not add to his comfort even if they did make us feel like we were "doing all we can for our baby" It was a conversation of good balance and I think we both understoodeach other very clearly. So far I have been so very pleased with the doctors at OU Children's Hospital, and with the support staff personnel too. The ladies at tehdesk in Pre-op processing remembered us from July, the anesthesiologist's assistant and resident and the pre-op nurses did too. I walked in and was asked " Oh couldn't your husband come with you today?" The anesthesia resident told me that while she wasn't "glad" Daniel was back for more surgery, she was glad she got to see him and find out how he was doing. If you have to have surgery performed on your child, its by a team of people like this!
Its so hard to cathc a smling Daniel or a laughing Daniel if I am the one trying to get thsoe smiels and laughs but in this rather wiggly photo you can see a laugh coming. I was tickling his ribs and , at  least this time, it amused him and pleased him to the point of laughing
. Sometimes it simply  ticks him off.
At the surgeon's office, he rather liked his stroller ride
But before long, he'd had enough of the day and its busyness so  off to peaceful sleep he went! I know he has no clue that every stitch of blue and green crocheted blanket he's wrapped in came from his mommy's eagerly waiting fingers, but I absolutely love  every moment I get to see him snuggled and warm with my labor of love! For a Mamma who thought her  "Baby days" were over, every day with Daniel is LAGNIAPPE!!


Mom to 9 Blessings! said...

1st loved your music list today as i read your post! :-)

this post is so filled with God's goodness and grace. i love how He continues to bless you with the right team of dr's to help care for daniel!

i love you and miss you!

Tammy said...

Good Ole langniappe! and every bit more is a blessing indeed!

Awesome update! and LOVED the music! It serenedaded us thru dinner :)


whenpigsfly said...

Thanks Tammy! I like to play around with my play list and that 10th Avenue North song is SO "right on" right now. ITs not one we'd sing as a congregation, but one I love to get a vicarious thrill as a performer over as I sing in my van or kitchen. How I praise God for the gift of music!!(And I may not live in the deepest Deep South any more, but it is where my heart really rooted down deep. My girls all claim to ber G.R.I.T.S. Girls Raised In The South!! )

whenpigsfly said...

Jill I miss you too! Our paths need to converge REAL SOON!!!!