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Old 08-10-2012, 09:21 PM   #1
Threeboysandachickie
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Lukes MAW trip:To all lizzards,squirrels,dolphins beware., we are stalking you!

This is a pretty depressing way to start Luke's pre trip report. Please keep reading. I cant wait ti introduce you to the new and improved LUKIE BEAR, age 8

Hi! I am holly mom to four wonderful kids aged 11-6, two wild hugemongus dogs and wife to my wonderful hubby Tom. Tom pretty much earns money for me to spend on beformentioned family members! Ssssh do not tell him though, it might make him feel as if we only love him for his cash, in all truth he is the most important of them all. He is the glue that holds the family together. Our three boys were perfection until Luke was 8 months old. Ok, they are still perfection, just different. Our life fell apart in mere seconds at lukes 8 month well baby check. I started explaining what a perfect baby Luke was. Never cried. Entertained himself in his bouncy seat for hours, was just a very happy go lucky guy. He's on schedule. In walks nurse with mmr shot. Sigh biggest regret of my life. I Sign off on the shots and left.

Two weeks later and we were back to the office with a different baby. No longer happy, no longer making eye contact and having severe stomach cramps. I was Armed with a videotape of my Luke. dr sat down and said, so you son is having gas tummy pains? I said no they are not tummy pains please watch. Two seconds later, the dr walks out of room with the tape leaving us speechless for 10 minutes. We sat, and waited. What is wrong with my precious baby? And NOW that I am expecting again.(dd#4) Troubles pour into our household in droves this first year. Finally the pediatrician walks back in and says he has an appointment set up for us at the university hospital neurology department.

In the car we go, crying my eyes out. We still have no clue what what could be wrong with Luke. We were met by a nursing crew and taken into a private lounge. We were informed that Luke is getting MRI, CAT scan, and a PET scan. Also they glued transmitters all over his head to measure brain activity...the nurses begin to explain that we are here for a long haul. The conversation begins and all i can think is ****excuse me what did you say??? ******SEIZURES...which turn into SEVERE brain malfunction. Luke is finally labeled West Syndrome or infantile spasms disorder. As parents the darkness sets in and and we think thats it. That' our sons chance at life is limited and fear sets in that my pregnancy could be at risk also, so genetic testing also begins.

Prognosis
In cases treatment of West syndrome is relatively difficult and the results of therapy often dissatisfying; many children ( up to 90%) suffer severe physical and cognitive impairments, even when treatment for the attacks is successful. This is not usually because of the epileptic fits, but rather because of the causes behind them (cerebral anomalies or their location or degree of severity). Severe, frequent attacks can (further) damage the brain.
Permanent damage often associated with West syndrome include cognitive disabilities, learning difficulties and behavioural problems, cerebral palsy (up to 5 out of 10 children), psychological disorders and often autism (in around 3 out of 10 children).
As many as 6 out of 10 children with West syndrome suffer from epilepsy later in life. Sometimes West syndrome turns into a focal or other generalised epilepsy. Around half of all children develop Lennox-Gastaut

Luke is one of the 90% who suffer from severe mental and behavioral problems. He also still has seizure activity. The brain damage he suffered has caused him to be vision and hearing impaired. This causes him to appear as a severely autistic child. He is not diagnosed as autistic, but easily could be. He is moderately ID. But, he is a gloriously happy boy who loves life! He is in no pain ( actually due to brain damage feels little to no pain reception), and is happily able to recognize his mom, dad, and siblings. He loves to pay games with us, and really enjoys attending our local amusement park. He also adores swimming and horseback riding.

Thank you for finding and following along on Luke's story!
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Holly and Tom parents to: Isaac 13 Noah ds 11 , Luke ds 10 (wish kiddo) , and Rebekah dd8

Visiting the darkside yearly since 2004
Staying onsite RPR or hrh

Last edited by Threeboysandachickie; 09-13-2012 at 06:32 PM. Reason: Title change
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Old 08-10-2012, 09:41 PM   #2
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I promise the next report will be more upbeat and positive. Our motto is ain't nothing gonna get us down. We have gone through a lot, but we've accomplished a lot more. I am excited to introduce The family to y'all. It's late here and I need to research links and pictures for next time. To all of you goodnight! And god bless
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Old 08-10-2012, 10:00 PM   #3
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So glad that Luke gets his wish granted! It sounds like Luke and your family have been through a lot! Has he made his wish yet?

Jackie
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Old 08-12-2012, 07:59 PM   #4
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Photo time!

I figured out photobucket! Here are some pictures of the family

My wish kiddo Luke, age 8


The other three: Isaac, 11, Noah, 9, and Rebekah, 7



Dh Tom and I, Holly



Here is my favorite of the best buddies Luke and Noah they are 15 months apart



I will add more photos and info after we meet our wish grantors on Tuesday evening!
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Old 08-13-2012, 09:42 AM   #5
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Double post
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Holly and Tom parents to: Isaac 13 Noah ds 11 , Luke ds 10 (wish kiddo) , and Rebekah dd8

Visiting the darkside yearly since 2004
Staying onsite RPR or hrh

Last edited by Threeboysandachickie; 08-13-2012 at 10:01 AM.
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Old 08-13-2012, 09:59 AM   #6
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[QUOTE="Threeboysandachickie"]We had three stressful years of therapy to get Luke fit and ready for school. His therapists includedhysical, occupational, speech, itinerant hearing, vision,and orientation mobility. He also had feeding terapy, the state finally brought in. Deadblind specialists to help train them on how-to work together with Luke. Things were definitely looking up! Luke learned how to walk and have fun. He can manuver himself around in well lit areas without help. He loves life! We were happy the seizures were slowing down and the sensory integration seemed to help him cope with situations.

Now Luke is great! Last month we attended his neurology appointment, and his doctor said he wanted to refer Luke to the Make a Wish Foundation. We were shocked! We do not think of Luke as having a terminal illness. Our doctor expained that seizures are serious things and can cause death. So, yes he does qualify. Two weeks later we got the call that Luke is eligible! We are excited for him, and are trying to brainstorm his favorites, so we can customize a wish with the graters this Tuesday. Luke is nonverbal so I hope if we show pictures of him doing things he loves and showing his water obsession they will better understand him.


Thank you all for reading about Luke's history! We appreciate your interest in our family! More on the rest of us

Tom works as a loan officer at a local bank, I have a retinal disease that causes me to be mostly blind and unable to drive, isaac has ADHD and anxiety, Noah has asthma, and rebekah has severe ADHD.

The kids are all swimmers our local swim team, Noah also plays football and basketball, Isaac plays drums in the marching band, and rebekah is a gymnast, with a little cheer leading on the side. Daddy Tom coaches high school volleyball for his fun activity, and I like to read!

That's the summary of us. We have all enjoyed learning about all your special families. God bless everyone and their fighting kids!
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Holly and Tom parents to: Isaac 13 Noah ds 11 , Luke ds 10 (wish kiddo) , and Rebekah dd8

Visiting the darkside yearly since 2004
Staying onsite RPR or hrh

Last edited by Threeboysandachickie; 08-22-2012 at 02:33 PM.
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Old 08-13-2012, 05:44 PM   #7
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I love the pics. What cute kids you have!

Jackie
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Old 08-13-2012, 08:02 PM   #8
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I really hope to talk to you more. My son Gavin is also a wish kid (I messaged you on the Wish board). Gavin was my perfect beautiful baby as well. He was born with holes in his heart (we were told) and pnuemonia. I did not get to meet him until he was few days old but after we got out of the hospital they said he would be fine. We started with bouts of pnuemonia, chronic ear infections, upper respitory, etc. He contiuned to progress normally cognitively until about 2 when he started some self mutilation, screaming constantily, ect. He was diagnosed at 2 1/2 with severe autism and they told us they also believed he had mental retardation but could not diagnosis him until he was older. At 4 he was diagnosed with MR. Since then our world has been turned upside down. ALong with all of the mental health issues, Gavin's physical health began to decline in recent year *he was hospitalized 5 times for atleast 5 days at a time for pnuemonia and over 15 ER visits for breathing issues. In October he went for a routine check on his heart because something told me we should check it. It was discovered something was wrong and he needed open heart surgery quickly. Three weeks later open heart surgery. Since then he is covering but continues to have some issues.... So I feel like I can kind of relate some I am also a case manager for the Intellectual Disabilties waiver so work with a lot of different disabilities but I swear the mom job is a lot harder.... So there is my depressing story but cant wait to share our trip stories for some optimism
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Old 08-13-2012, 08:08 PM   #9
Threeboysandachickie
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Ha! What a coincidence! Luke is now on an ID waiver. We live near you. It's always fun to meet someone else from Iowa! I'll try and chech out your previous posts tonight! Welcome!
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Staying onsite RPR or hrh

Last edited by Threeboysandachickie; 08-22-2012 at 02:34 PM.
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Old 08-15-2012, 09:11 PM   #10
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The make a wish girls came and visited us last night. It was exciting, but anticlimactic. We just filled our paper, signed our rights away and then they wrote down Luke's wishes. The asked for three different travel dates, and, said they would see what thy could work out best. We will get a call by September 1 with the reveal of the details. It just sent as exciting as ithought it would be. Anyone else have an experience like this. I'm sad, I was expecting at least a little bit of magic.
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Visiting the darkside yearly since 2004
Staying onsite RPR or hrh

Last edited by Threeboysandachickie; 10-08-2012 at 09:11 AM.
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Old 08-18-2012, 06:43 PM   #11
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Sorry it was anti-climatic, but yay on getting that wish in and official! We just did our's today. I was beyond excited!!! Now to wait....aaaahhhhh!
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Old 08-22-2012, 09:34 AM   #12
Threeboysandachickie
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We received an email from our wish team yesterday. Our chapter is working on Luke's wish details right now. We can extend our trip if we want, and our paperwork has been sent to our doctor for permissions. We have requested a third adult accompany us, so Luke's doctor needs to sign off on it in order for make a wish to provide funding for her. I am blind with a service dog, so poor dh does the majority of kid managing (4 of them ages 7-11) we want to be able to split up in case Luke can't handle a lot of the big kid stuff the two older kids want to try. We also can only take Luke on rides with side by sde seats for his safety. We really want to be ble to keep a hand on his knee or around his shoulders. He loves rides, but I am terrified he will find a way to squirm his way out of a seat restraint.

Other news, the kids started school this week. It has been very lonely around the house! Guess I'll have more time for some Disney research. Can anyone suggest a good disney guide book?
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Visiting the darkside yearly since 2004
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Old 08-22-2012, 02:40 PM   #13
Threeboysandachickie
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We received the approvals for an extravadult to come aolg now he search begins!
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Holly and Tom parents to: Isaac 13 Noah ds 11 , Luke ds 10 (wish kiddo) , and Rebekah dd8

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Old 08-28-2012, 10:44 AM   #14
Threeboysandachickie
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Luke received his new wheelchair yesterday! We were so excited. as many of you know insurance was a bear, it took over three months to get approved. He has had a mobility stroller before but this is his first Convaid. It's so small and easy to handle. I am very relieved we received it before his trip. We wanted to embroider a superman insignia on the back, but have realized that a backpack would cover up the patch. Guess I'll look for a backpack that can be fit the chair and be embroidered also.

Here are two pictures from the weekend, rebekah in Luke's new luxury coach, and the brothers enjoying the deck!
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Visiting the darkside yearly since 2004
Staying onsite RPR or hrh
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Old 08-28-2012, 10:46 AM   #15
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Ugh I cannot figure out the mobile phone posting. Sorry for all the double posts!
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Holly and Tom parents to: Isaac 13 Noah ds 11 , Luke ds 10 (wish kiddo) , and Rebekah dd8

Visiting the darkside yearly since 2004
Staying onsite RPR or hrh

Last edited by Threeboysandachickie; 08-28-2012 at 12:14 PM.
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