Wednesday, April 23, 2008

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.

Friday, April 18, 2008

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.

Thursday, April 17, 2008

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?

Wednesday, April 16, 2008

Tuesday, April 15, 2008

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!

Monday, April 14, 2008

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!

Sunday, April 13, 2008

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!

What's the Verdict? #1 Hearing

Dandy Walker variant, as I understand it, is having the traits of Dandy Walker Syndrome without the all of the same effects. What traits you get is somewhat of a mixed bag and is different for every child. At birth they gave him a hearing test, several actually, and figured out that something was wrong with his hearing - they had hoped that it was just amniotic fluid still in the ears, but later test revealed severe hearing loss in both ears. At the time we were going to a Neurodevelopmental therapist who travels around the country teaching the parents therapies to do at home with their children with remarkable results, you can contact them at http://www.hope-future.com/ . She stresses for the children to get tympanograms. A typanogram measures the amount of fluid behind the ear which is OFTEN missed by pediatricians when they check ears. If your child has fluid behind the ears that isn't going away she says to push for tubes like your house is on fire. That is exactly what we did and we are so greatful. We started pushing when he was 6 months and had a doctor agree to do it when he was 9 months. Luke was hearing sounds as we hear things when we are under water. His hearing, improved by 60 decibles in one ear and 40 in the other. As you can imagine his speech began to come along as well. When he got a little older he got a hearing aid for that his bad ear and the deaf/ blind organization bought for him a sound field that will travel with him to whatever school he goes to (this was a HUGE blessing!).

Monday, April 7, 2008

Real life begins....


From birth Luke somehow learned to be bossy. He expected to be attached to the breast at all times- I was after all the 24/7 buffet that had nothing else to do but feed him. When he would fall asleep nursing he would detach and his head would fall to the opposite side but then he would, with eyes still closed, reach his hand over and lay it on my breast to make sure it was still there...just in case. There is something about knowing this is your last baby that makes you hold on a little tighter and tolerate a little more. I loved to watch him as he slept in my arms until that became the only place he would sleep, knowing that my adoration was going to ruin him and the family's desire for clean underwear soon made me overcome my facination. He was a fussy guy until we realized that he could not handle my milk - which wasn't until he was about 4 months old. We switched him to Nutramigen and he became the sweetest baby in the world. Until you put him down... there was no rest for the weary or my kids either. His siblings became his best buddies, I don't think my husband and i would have survived without them and my mother.
Over the next year Luke and I got to spend a lot of time traveling to the Children's Hospital that was an hour and a half away. Being navigationally challenged this was always an adventure, in fact my husband was telling me how getting the Tom Tom has removed so much amusement from his life, because I would call him and say, "Where am I?". By the time Luke was 6 months old i had the trip memorized..... mostly. My employers became impatient with my continual need for time off for Luke's multiple appts. Being a Christian School they were patient and waitied while we worked things out - or i should say, God worked things out. I was carrying the insurance and we were still pressing the state for Medicade for Luke, there was no way we could go without it. My husband's employer finally not only kicked in for his entire insurance bill, he also gave him a raise and a truck. I came home and took care of my baby boy.

Because I can't have anything be simple, and because we could no longer afford to keep all 3 of our kids in private school, I brought my 2nd grader home with me and we homeschooled. The bond that was formed between Tristin and Luke in that year has made Tristin, Luke's unequvical favorite - which Tristin does not always appreciate - But Luke ignores reactions that don't suit him so he doesn't mind.
The hospital, with my permission, got Luke signed up for Child Watch an state organization that has been life changing for Luke. With Child Watch we got an angel named Meri Jo, she was a tireless defender for Luke and made sure that every program that was available, he got. She got Easter Seals and the Deaf/ Blind program to come out to my home and begin working with Luke 3 x a week beginning when he was 6 months old. The early start with Educational Therapy, Physical therapy, Speech Therapy, and Deaf/ Blind Therapies were so instrumental in Luke's progress i shutter to think where he wouldn't be without them. Meri Jo also made sure that before he aged out of her program that our school district - that has been a stickler in other cases but was agreeable for us - allowed and paid for Luke to attend a school in the neighboring disctrict that is set up with a 50/50 program that has special needs kids in the same classroom with typical peers (50/50 ratio) and all the therapies that Luke would need in one building. Miss Sarah, of the deaf/blind program, and her band of joyful para's came into Luke's life at 6 mo or so and works through the school where has attended just before he turned 3 has been another one of God's many blessings in his life. She has picked up where Meri Jo left off and makes sure that Luke gets every advantage available to him at the same time lovingly not tolerating his mess. Luke has had so many great people, teachers, and friends - he is a blessed little boy! Ok - Laundry needs to be started, bills paid, floors mopped and bathrooms cleaned not to mention that I haven't had my shower yet and I am not smelling too good either.

Bye for now!

Sunday, April 6, 2008

Let the adventure begin..


Luke came into the world via C-section and right away let us all know he was a force to be reckoned with. As soon as he was out of the womb he began to pee, the docs backed up waited for him to finish and just when they thought it was safe to come back to the warmer he started again... Then when they rolled him on his belly to check out his back he pushed himself upon his arms and had a look around.... that was the point where we should have realized he had come to rule the roost.
It was tough to be in the hospital as a series of new moms came and went with their healthy babies while doctors came and went from my side of the room with new fears for my child. I had to talk myself out of the hormonal breakdown i desparately wanted but didn't have time for. My mother hen instinct was kicking in... he was so little, so vulnerable, and he was ours to care for and protect. Nothing they told us could change how much we loved him or how facinated we were with his every movement, nothing could make us not want him in our lives and his siblings felt the same. He was part of our hearts and he was family. It was love at first sight.