Tubin'

My mom and I took Luke to the hospital today for his 3rd tube surgery. They booked us early as the hospital has memory of what he is like later in the day when he is hungry and under the effects of the "silly juice". This time, however, he made out great! He was pretty cheerful before and after. Now we just wait and see if his hearing and behavior is better now that the tubes are back in. Were hoping he stops being so LOUD! So are our neighbors :) jk

I think we may have reached another milestone as well! Luke has consistently gone #2 on the potty here at home for over 2 weeks. Can I express enough how much of a huge PRAISE THE LORD that is? Wiping your 5 year olds rear gets frustrating! Finally light at the end of the..... well never mind.

Go to Sleep!

Luke wakes cheerfully every morning at the crack of dawn, and since daylight savings time dawn has come earlier than anyone would like. If he could just get up and come cuddle quietly that would be one thing but he loves to talk, and talk, and talk..... SO I say, Luke BE QUIET! So he talks quietly in my ear....and talks, and talks.... So I say STOP TALKING! But that is not possible for little man. Finally in frustration I said, Luke, go sit out in the rocker and talk to God, he is the only one thats up in this house! So Luke got up and colored at the kitchen table... at last the angel wings unfurled and he sat quietly for the 5 minutes that we had left before we needed to get up and get ready.

Oh well... until tomorrow morning, early tomorrow morning.

Ears...again!??

A few weeks of insane behavior following a bad ear infection is a pretty sure sign for us that Luke has an ear problem, not any infection noticible to the docs, but fluid (sometimes spottable sometimes not), behind the ears and I am strongly suspecting that his tubes are out because I am not seeing any drainage. After a visit to the nearest Children's Hospital where his doc is and two adults to hold him down the doctor finally got a look at his ears and sure enough tubes were out. We scheduled another surgery for as soon as possible but it is not nearly soon enough....
When asked to put the phone away, "No!" "You do it!", When TOLD to put the phone away, "Did you hear me? What I say? No!" When the countdown to the showdown was given he stomps off, slams the phone down says, "Doodness dracious!" and goes to the nearest door he can find (our bedroom door) and slams it for good measure. We then look at our 14 year old and say, "You have taught him well..." Luke is crying and whining instead of talking, can't seem to get his world right side up and we are about to lose our minds, all of us, from my husband and I to Charlie the dog.... How much longer till the surgery?

First day with my glasses...First time I fed them to the dog

Where are we now?

Luke is now 5 years old and a legend in his own mind but when you have been given a death sentence by a few gloomy doctors you appreciate the life that you see. He has his issues to overcome; he has a severe hearing loss in one ear and a mild loss in the other, scoliosis (curving of the spine), he walked late, 22 months, but i should have been grateful for those time because now he runs everwhere, he had to wear AFO's (braces that come to the ankle) until 6 months or so ago, he wears some pretty serious glasses and may need surgery in the future, he still has speech issues but he still manages to talk way too much and way too early! He has long since conquered potty training with #1 but #2 has been a struggle. After seeing the G.I. doc and figuring out the problem (stretched intestine) and being on strong doses of Murilax he has been getting to the potty on time - we are excited about this one - shew! There is nothing about his appearance or movements that suggests any issues to the untrained eye. He's a pretty normal kid.
He recognizes and his ABC's and can write many of them, he writes his name, and can read a few basic words, he knows his opposites, colors, shapes, animals (thanks to an AWESOME school),
and is a smart guy. His dad is a mechanic and Luke carries those tendancies - he loves to try and fix things or take them apart - he can analyze and watch and if he's not supposed to know how it works he figures it out. "No" is encouragement for him i think sometimes. He can come home and tell me what happened at school or church that day but his stories are limited to who, what and where, but why is above his comprehension right now. Like... why are you in time out? And why did you hit your brother and kick the dog?

My purpose for this blog is to let you know that this diagnoses is not a death sentence, it's not easy either - but that's just parenting. I wouldn't choose for Luke to struggle but he has been a testimony to me and countless others. He reminds me that God is so faithful, that you can't place limits on how God can move in your life or the miracles that are possible when you trust Him.
Luke is like every child - a gift. We are so blessed that God entrusted him to our family!

Don't Give Up Hope!

Just saw this post on www.foxnews.com . This 44 year old man went into the ER with leg weakness and after an MRI or CT scan and discovered that most virtually all of his brain was missing! The interesting thing is that his IQ is only slightly lower than typical people. Check this out!

What's the Verdict? #2 Genetic MIRACLE

In the hospital they prick your childs body somewhere and then go and test the blood for genetic abnormalitites. It usually takes 4 weeks and you get a letter in the mail. Ours took 6 weeks and we got the results when we went to his pediatrician at the time, Doctor Scott. After checking him out and declaring him good, the doctor put his hand on my shoulder and told me that Luke had Trisomy 13 - which is fatal and said enjoy your time with him, he probably won't survive past 4 years old. I left not entirely sure that I had heard him correctly, all i could do was look at this sweet little boy so tiny and perfect try to absorb what the doctor had said. My husband kicked things into high gear and made sure that we got to see the genetisist in charge of the study the next day.
The head genetisist at our nearest children's hospital took a look at our boy and reviwed his results and said, "I don't know what to tell you. What Luke has we have NEVER seen before." The reason your results took so long is that the lab asked to redo the study and dig deeper with the FISH test (i don't know, don't ask). Here is the results as I understand them.... Think about your genes as books stacked in a pile on the on the floor in alphabetical order, in the center of the stacks is the "brain" of the gene which tells the "books" which order to be in. Luke's are all in order except for the bottom which was smudged and here is the kicker for me - they were all in order but there was no center, no brain. What does this translate to? While most Trisomy 13 children do not survive because their "books" do not communicate with the cells correctly so therefore organs don't get made correctly - organs like the heart, the lungs etc.. and this was probably the root cause of the dandy walker, however, no other organs were affected for Luke. Thus, the addition that Dr. Scott unintentionally left off, mosiac, Trisomy 13 mosiac, meant a miracle for our baby. The doctor couldn't tell me with any certainty, but he felt pretty sure that his life expectancy should be that of any other person. God is so good!