Black Belt Training

He's back.....and he's in black!!!! Luke has officially upgraded to "Black Belt Training."  After having about 2 months off, Mark and I noticed that Luke was more "bouncy" at home, and tending to be hyper more often.  I wondered if there was a connection between more hyperactivity and karate.  So I did what I always do....I Googled!  After several hours of extensive google research (insert a giggle here), I did find that YES there is a connection.  In fact, karate, or martial arts, is the number one activity for children who have ADHD.  They are more successful in martial arts, than say baseball.  Mainly because it requires them to focus and allows them channel their punching, kicking, and oh yes..yelling in a positive appropriate manner.  Swimming is also another great activity for children with ADHD.  The resistance of the water and full body involvement including sensory systems is an excellent activity for kiddos like Luke.  Baseball would be more difficult...per say...for Luke, because there is so much "down" time in the game.  I can see him out in left field day dreaming or doing his own thing only to miss the game.  Not to say we won't try, but there is a definite therapeutic benefit to Luke by participating in karate.  I told Mark that I want to approach karate like we approach therapy.  Because I honestly believe that is what it is for Luke.  It helps him to be calmer, motivated, greater self control and focus.  He also sleeps better.  Plus...his karate is sooooo positive.  They learn character traits and participate in character building activities.  The instructors are awesome and are super sensitive to Luke's special needs (as in ordering him a special helmet because of his microcephaly). 

So HE'S BACK!!! And LOVING being in the BLACK BELT TRAINING class.  We are proud Luke!!!!

The Latest On Luke

Everyone is so great about checking up on Luke and asking how he is.  I really love that so many people care about this little guy!  I thought I would share a little update about how he is doing medically.

Luke had an appointment in early September at Casey Eye.  I didn't blog about it at the time because I felt I had been writing so much about Casey Eye that we all just needed a break.  That day in September I had to go up there by myself (Mark was working the new schedule) and it is always anxiety inducing for me to go without a support person.  The news was good from the appointment.  Luke's latest visual field test was much better than the previous two.  The doctor did emphasize that his vision field tests were still NOT normal, but much better than what we saw earlier this year.  It still does not explain the million dollar question about what is causing these issues?  Luke still takes his eye drops faithfully each night, and we again got a referral to a specialist (but one that we have seen before).  We are going back to Legacy Emmanuel to the genetics department.  Off to see Dr. Antiodiotis.  The doctors are curious if there is a genetic connection between all of Luke's medical issues.  In fact, Dr. Edmunds (Luke's glaucoma doctor) said she began thinking of the genetic component after something I had said.  "ME", I said something that made a doctor think.  It really is true what they say "Mother's know their children best." 

Now Dr. Edmunds is talking about CAT scans and MRI's which I am NOT eager to jump on that boat with her.  Every doctor we encounter is always curious about Luke's microcephaly.  They are curious to take a look inside the head/brain.  CURIOSITY my friends is not a valid reason in my book to have Luke undergo another procedure.  Give me a medical issue/reason why they think it is necessary and we can talk, but for the sake of just looking....come on...I DON'T think so. And it is not like it will change his course of treatment. 

Luke got a new pair of blue glasses that he picked out all by himself.  He was so proud about it!  We are still using the iLs to help with the auditory processing issues and also attending OT weekly.  He is making great strides with his handwriting, and is doing well in school. 

Luke seems to be doing a bit better with Mark's weird schedule.  At times it is more difficult than at others.  I just keep reminding him that it won't be forever.  He is a big help around the house when he wants to be.  Other times....well...not so much.  He is a big help with Isabella and will mostly do what I ask of him.

Overall, I feel things are going well with Luke.  I have moved past the frantic feelings of needing to know everything that is wrong with him.   I have PEACE.  And even though I still don't have all of the answers to his eyes, I am daily "letting go" of my expectations and worries for the future and thanking God that Luke is doing so well, that he is an awesome reader, good speller and has made some friends at school this year.  

What is Luke's therapy like???

Luke doing a puzzle while having our first and last iLs session in West Linn (before we found out the insurance won't cover it). By the way, Luke has never sat and done a puzzle like this before, EVER. He finished it too, with minimal help from me. I was impressed.

Luke working with Janell on speech sounds and phonemic awareness during our first and last therapy session.

When we finish raising the funds for the iLs (Integrated Listening Systems), Luke will begin therapy sessions in our home. I am going to be trained in June by iLs to use this machine with Luke (and others if I want). The iLs programs will "re-train" parts of the brain involved with learning, communicating and moving. By combining an auditory (listening) program with specific visual and balance activities, iLs strengthens neurological pathways and improves the ability to learn and process information. This program uses both air conduction and bone conduction to deliver information. The music in the iLs is "gated" music. This means that the program filters the music to remove high, low and middle frequencies a different points during a session. Alternating between these frequencies exercises the ear (muscles of the middle ear). The benefits to this program are increased concentration, cognitive skills, reading and writing, visual, auditory and motor coordination, processing speed, energy, self-confidence and mood and behavior. During our sessions Luke will also be working on reading and phonemic awareness strategies to improve reading fluency and recall.

An update on our funds is that we have raised $800 so far towards the iLs system! In less than a week we have raised that much. Only $1000 more to go. I am AMAZED at God's goodness and faithfulness to us! Keep praying for Luke and the additional funds that we need. My sister Katie is still donating her proceeds from her online store to Luke... visit SLATED . Thank you again Katie and to everyone that has donated so far. You ARE making a DIFFERENCE in my son's life!

Devastated

Last night I received a call from Janell at Dynamic Learning Services (where Luke is doing his listen therapy). She said that our insurance decided they are NOT going to cover the therapy that Luke so desperately needs. I was shocked as I listened to her sweet voice tell me this. I had done ALL my homework and called the insurance company before we even proceeded with the first evaluation. They had also called and made sure our insurance would cover the therapy. We were both told they WOULD. Janell kindly told me that we had two options: pay for the therapy ourselves, or buy our own ILS (integrated listening system) and do the therapy with Luke ourselves. To take Luke for the 30 sessions to West Linn would cost us 3800 dollars for the 4 months plus gas on the hour commute 2 X per week. To purchase our own ILS and perform the therapy at home will cost 1800 dollars. Yes, the 1800 dollar machine won't be "as" good as Janell's, but they are both made from the same company with the same scientific research.

After she told me the devastating news, I cried for a half an hour. I WORKED so hard arranging all the commuting, fighting for the two different time slots, arranging with the teachers and staff at school, laminating all the speech sounds cards, etc. But mainly I cried for LUKE. WHY must everything be so difficult? I felt like a failure as a mother. "If I was a good mother, I would have the 825 dollars a month to take him." But the truth is I DON'T. So...after a good pity party (thank you Maryjane for reminding me it is ok), a talk from my MOM and MARK, and being reminded by my sweet SISTER that I am Luke's biggest ADVOCATE and a FIGHTER for him....following her lead....I AM GOING TO FIGHT! The health professionals have shown me his deficits, proven to me the auditory difficulties he has and have made the case for WHY this THERAPY is so important. The only thing they haven't done is made the therapy possible for mommy's like me. I don't why GOD would change the path...but here we go. We decided we need to raise the 1800 dollars to buy the machine for home use. Not only will Luke first benefit but Grace can go through it next, and Mark can use it for the Dyslexia he struggles with, and it will only be another tool for my career work in sped.

The TRUTH is...we can't do this alone. This is a time I am asking for HELP. I hate asking for help, but I need it. My sweet sister Katie decided to donate all the proceeds of her online store to Luke this month. I am blown away by her generosity and creativity. You can visit her site and purchase something and all the proceeds will go directly to Luke to help bring him this therapy. Her site is www.etsy.com/shop/slated If you would like to make a donation to Luke there is button posted at the top right hand side. If you can offer your prayers to partner with us that God will provide for Luke we would extremely appreciate that too. Thank you!