Tomorrow's Appointment: The Glaucoma Specialist

Tomorrow we return to Casey Eye to go over the results of Luke's latest procedure. (And it is with that last sentence that I realized I never talked about Luke's last eye procedure).

Let's take a minute and review what happened :)  Luke was referred to Glaucoma Genetics several months ago.  The specialist referred us to a specialist (so I don't know what to call this specialist).  It is the type of appointment where they call you and "let YOU know" what days you will be coming, and you schedule your day around the appointment, not the appointment around your day.  So June 29 was the day.  We went up to OHSU on the hill (which I hadn't been to before).  It was pretty amazing!  An entire building devoted to Glaucoma!!! I felt a lot of things: nerves for what they were going to do, anger that Luke was dealing with yet an other issue and another procedure, and thankfulness that we live in a country and in area that has the best of the best when it comes to glaucoma and eye care.

After finally finding our way to floor 5, Luke was called back and we were explained what would happen.  They put some numbing cream on both of his hands and then wrapped them. Luke was going to have to get and I.V. for sedation for the procedure.  We waited another hour for the cream to take full effect.

I had been told previously that we were going to have to wait 30 minutes in a dark room after they dilated his eyes before the procedure could begin.  Silly me thought that a dark room  meant dimmed lighting, music and some comfy chairs.  OH NO...was I EVER WRONG on that one!!!! After they called us back again and  Luke was outfitted with the I.V. (by the way he was a trooper and no tears or anything), we (meaning Luke and I, because only one parent was allowed in the "dark room") were put in the "dark room".  Ya...so the dark room wasn't dimmed lights, music and the such. It was PITCH BLACK (couldn't see the hand in front of me) room.  It was two hard chairs and a bunch of pitch blackness. It took everything in me not to have a panic attack.  So for 30 minutes, we played silly games (like guess how many fingers I am holding up) and sang songs (like... "this little light of mine") until....(and here's the kicker) the anesthesiologist came through the according sliding door with a red flashlight, so that I could sign the consent that I understood the risks  associated with sedating my baby!  It was a moment that I hope never repeats again in my life, and if it does that it is Mark signing in the red light.  Oh...the things we do for our children.  They propped Luke up and onto the bed and told him that he was going to go to sleep now...only the I.V. decided that it wanted to have a kink in it and the medicine to make Mr. L happy and relaxed was not flowing through that I.V.  And so as they frantically (the nurse and the anesthesiologist) tried to figure out and rectify the problem, Mr. L started freaking out.  And when I say freaking out....I mean FREAKING OUT.  Screaming, crying, kicking, pleading with me to take him home...."Please mommy...I don't want to do this anymore.  I want to go home!!!!"  "I'm scared, I'm scared, I'm scared!" His chin and lip quivering and his feet kicking and then when they finally got the kink out, the medication burned going in so I heard, "Ouch, ouch, ouch,...make it stop".  Until finally he relaxed and I was asked to leave.  Two thoughts raced through my mind..."Where is MARK?" and "what did I do to my baby?"

I made my way to the corner of the large waiting area, where Mark was, and proceeded to completely lose it recounting the events that led up to this.  Mark later told me that he could hear Luke screaming in the waiting area and it took everything within his daddy's heart not to tear walls down to rescue his boy.  I no longer had calmed down when a white haired old lady decided that she wanted to butt into our conversation by asking all about what procedure he was having, telling me that I shouldn't have gone back with Luke, Mark should have gone because guys are tougher than mommy's (thanks) and that no matter how upset Luke was he has to have these procedures so just tell him that next time.  Again..thanks.  I wanted to RING HER NECK.  She then butted in further to inquire if he had an developmental problems.  OH MY GOSH.  Has she no tack?  That is when I got up and left.  I didn't need to take that on top of live though the next hour wondering if my guy was ok?

During the sedation they were preforming an ERG (electroretnogram) or a series of pictures to measure the rods and cones in the eyes.  The doctor also came and looked at the back of his eyes, they took blood and photography came up to take more pictures that are easier to do when a patient is sedated.  After an hour, we were called back, Luke woke up, had some juice and crackers, and after a wheelchair ride down to the car we were on our way home.  The ride home was joyous as he screamed the entire way that his eyes hurt.  I had to climb in the back of the car and restrain him somewhat as he hid his head under a blanket.  An hour later he was good as new, and the next day a trip to Target to pick out "Pop the Pig" (a thrilling game let me tell you).  All was well again.  Which leads me into tomorrow.....

I would be lying if I said that I wasn't nervous about tomorrow.  It is the unknown that scares me the most.  Not knowing what to expect.  The thing is I have absolutely no idea what they are even going to tell us or what they were looking for with his last procedure.  We will once again climb the hill to OHSU and ride up the elevator to floor 5 to hear what the doctor has to say.  Now...convincing Luke to come along with us...that is the difficult part.  Any prayers you can say on our behalf tomorrow would be greatly welcomed and appreciated.  Appointment at 8am pacific time, update to follow.  Thank you!

ILS (Integrated Listening Systems)

I can't let anymore time go by before I pause here to share with you the incredible miracle of of God's PROVISION.  First off, thank you to everyone that donated money to Luke.  It means more to me than you will ever know and this MOMMY's heart can't find the words to express to you about how much it means that you all care about Luke so very much!  But the incredible thing is it is not only being used by Luke but by Grace as well.

It is a multi-sensory approach to the therapy and we are having fun using it in our house.  I of course LOVE being the therapist and helping them do all the fun activities from the play list.  They are balancing, bouncing balls, tossing bean bags (or pelting me with them) stretching, drawing, playing Wii Sport (which is allowed during the iLs time).  After a bit of adjustment, they are tolerating the ear phones just right (the head band helps keep them on Luke's little head) and they are great about understanding the equipment and being responsible and respectful when it is their turn.  I can't wait to report the updates and results as we begin seeing them.

Our Kindergarten Graduate!

 On June 8th, Grace became our newest Kindergarten Graduate.  She preformed in a program with her class and she did an incredible job!  She even had a speaking part.  Miss B did well by sleeping through the entire graduation only waking in time to have a bite of cake before heading home.  It was nice as I was able to enjoy the graduation without chasing a baby around!  Luke played Mimi's checkers game throughout most of the graduation which kept him occupied as well as entertained.  WE are so PROUD of you miss Grace Kylaa Elizabeth.  You are spunky, independent, kind and caring and I couldn't ask for a more creative, helpful wonderful daughter. We LOVE you so very much and look forward to all the incredible things God has in store for your AMAZING life.

 Grace with Miss Anderson (her assistant teacher in kinder)

And Grace with Mrs. Gaines (who in my opinion is the BEST kindergarten teacher in the WHOLE world.  Both Luke and Grace learned incredible, wonderful things in kindergarten and there is nothing better than setting that positive foundation for school, learning and life).  Thank you Patti for everything you did, you do and the all the sacrifices you make to serve little 5 and 6 years olds and for taking on the challenge of my crazy kiddos!  We LOVE you!)

June Catch Up.....

Well, most of June has flown by.  It has been a very busy month with graduations, end of school and work, a vacation and holidays.  It has been an amazing month of blessing by God, family and even people I didn't know. I will "ATTEMPT" over the next couple of posts to capture this month of June in pictures and get everyone caught up.

First things first...let's venture back to Memorial Day weekend, where my friend and amazing photographer Carla Hunt, with Chocolate Tree Photography, came to a park to capture the essence of my kids (at this moment).  I think she did and AMAZING job!  Not only did she take awesome pictures, she connected with my kids and they LOVED it!  Including Bella who hates getting her picture taken. This is the only photo session in her short life that she has not cried hysterically and worked herself up.  I have said it before, but I will say it again, "thank you Carla!"

 

The Dahl Kids (2011)

The next event in our life was the first weekend in June.  Luke had his karate graduation where he went from the yellow belt to the orange belt.  He did AWESOME!

The Miracle Trip

Two weeks from today, we will be at the Happiest Place On Earth!!!  I am so excited I can hardly stand it, but I have yet to pack a thing (although I do have piles for organization).  I need to grab the suitcases out of the attic.

 Disneyland 2006

 Disneyland 2007

Disneyland 2010

The kids are very excited as well and keep asking me "how many sleeps?"  I told them we need to make a countdown chain.  :)  Even though the kids don't understand, my heart is grateful for this opportunity.  You see, finances have been very tight and difficult this past year.  There have been many expenses and with me not working much of the year, the financial pressure has felt heavy at times.  With Luke's therapy needs, medical bills and my tonsillectomy, it has seemed too much at times.  There was no way a couple of months ago that I thought we would be taking a trip ANYWHERE.

THEN....out of the blue...we receive a phone call.  A few people had gotten together and decided that they WERE GOING TO PAY for our family to take a trip to Disneyland.  I was SPEECHLESS!!! I couldn't believe that these people were doing this for us.  They told me that they wanted Luke to be able to enjoy Disneyland again right NOW.  That he needed a vacation away and a break from ALL the medical stuff in his life.  The only thing they asked is that we kept them anonymous.  I have no idea if they read my blog, but if they do....thank you from this incredibly grateful mommy's heart.  I am so thrilled for this break and trip and will LOVE and ENJOY every moment.  Thank you for this most awesome blessing and for investing in my children's lives.  And for allowing us to make life-long memories with them!

Luke's Book

Luke has this awesome interest in making and writing in books (or white computer paper he staples together).  He loves to sit in his bed at night and write and write and write (which just thrills this teacher mommy's heart!)
Yesterday, while he was playing or resting (he's been sick) I found his latest book he has been writing in.

He titled it "My Days".  It reads:  "Dad takes me to do fun stuf.  and cool stuf. like golf or shooting, or football.  And we play together, and go bike riding together and going fishing.  Today Mom and Dad are taking me to a rashtront (restaurant) and I found a dead phone last night (my old cell phone).  I am keeping it.  We are going to a rashtront.  Tomorrow I am going to school and home.  I mite go on a bike ride, and sleep in to (I would LOVE that Luke!).  On Tuesday I am going to play the Wii or twister or truble or nerf or play with the baby.  On Wednesday I am going to krody (karate) with Theron (boy in his class) and sleep in (there it is again!).  And play nerf on the Wii or play outside with Grace.  We fite (fight) together.  Not the fiting (fighting) with swerds (swords).  On Thursday I am going to therapy at the hosebitl (hospital) with Joy (his therapist).  We have fun together and play games together like skitball (?) On Friday I am going to school or staying home.  I think I am going to school on Friday.  On Saturday I think we are going to bul (bowl).  On Sunday we are going to cherch (church).  Mimi will come over to are hose (house) or not.  On Monday I go to school every day exept (except) for Sunday and Saterday.  On Tuesday I go to school it is fun. **** BUT there is a buly (bully) in my class.  His name is Hunter.  He pretens (pretends) to punch me.  He lafes (laughs) at me win I take a penny off my name bord (board).  He is not nice to me and he calls me stuped (stupid) every day. This is my sher (share) day today. But I have a cold and can't go to school.  My dad is nice but Hunter cales (calls) me stinky pants. But I ignor (ignore) him.*****  On Wednesday it is a hafe (half) day and we are lerning (learning) dividion (division).  On Thursday I get out of school ely (early).   I have therapy. We play together.  I thror (throw) ben bags (bean bags) in a target.  It is fun.  We do table work.  On Friday my dad takes the day off on fridays.  He us (used) to take tusdays and mondays off.  He got bumbed (bumped) to the 221 job.  But he us (used) to work on the 227.  He is going to get col (coal) for me.  On Saturday my dad hase (has) to work. It's (yes he used a contraction!  Go Luke!) sad. On Sunday Mimi come's(now he wants to use them alot) over on Sunday.

I honestly can't believe that he wrote all of that with NO help from Mark or myself.  I must admit I teared up reading about him describe being bullied everyday at school.  How is that ok? or acceptable?  Why must the bigger prey on the little and the different?  My heart breaks that he gets on the bus each morning knowing what awaits him the classroom.  I talk with all the teachers all the time and there never seems to be an resolution to the issue.  I have seen this boy in action and I have no doubts that he knows how to push Luke's buttons.  I just bothers me that with all of Luke's OTHER issues (glaucoma, tourette's, ADHD, sensory processing, auditory processing, microcephaly, etc.) that he HAS to deal with this kid.  Makes me MAD.  He tells me he gets picked on when he leaves the classroom early to go to various therapies and OT with us on Thursdays.  Please pray for wisdom for Mark and I as we discuss the educational future of one VERY exceptional child!

Unknowns

If there is one thing that irritates me in this world...it is not knowing. I HATE the unknowns. Unfortunately everything is an unknown right now. We finally have the two appointments scheduled for Luke's eye genetics. I did find out that they are going to have to sedate him to take pictures of his eyes. I don't like that idea, but I understand. Then a few weeks later we have an appointment to meet with that doctor.

Then there is the whole issues of school choice. I wish someone would just make the decision for me. I think this is always the most difficult decision for me. There are so many ways to look at this and so many layers to this puzzle. Here is a little background. Currently Luke is in public school. He is being served on his IEP. No matter what choice we would make for Luke(public, private, home school) he is entitled to receive his specialized instruction on his IEP. It is his right. Public school is experiencing major budget cuts. Larger class sizes, fewer teachers, less programing, resources and tools will be the reality. This is concerning to me as a parent of any child, but with Luke especially. He requires a lot of attention and in a class of 30 that is not a lot of teacher time to go around. Luke is picked on and made fun of by classmates because he is "different". Kids today know MUCH more than we did. He fights us tooth and nail to go to school everyday because he says he HATES school.

We have tried private school. It was awesome in kindergarten and just what Luke needed. The small class sizes are great, but the work load is very difficult for him. He is not the typical "cookie cutter" kid. I have heard that he requires too much attention of the teacher and takes away from other students in the private setting (which breaks my heart and infuriates me all at the same time). I feel like screaming at the top of lungs "don't you all get it? Don't you see? He NEEDS people to SUPPORT him now more than ever." BUT...I know the rules of private schools...they do not have to, nor do many of them except any students with special needs into their programs because they do not have the ability to serve them. I would like to CHANGE that. I see the vast need for CHRISTIAN EDUCATION and children with special needs. I have researched until I have been exhausted and there just are NO options for kids like Luke. How sad is that? Parents who desire to bring up their children and educate them in the ways of the Lord through Christian Education are left with very few options for doing so. And then there is the cost....who has 4800 dollars per kid laying around these days? Take that times 2 kids and then add 350 dollars a month in gas to transport them each way and the total monthly payment for private Christian Education is around 1300 dollars per month. And this is where I can start with the I HATE money conversation. STINKS.

Homeschooling is what my children keep asking me to do. I give it a lot of deep thought. Mark and I pray about this. It is a VALID option. I am a licensed Washington State Teacher with a K-8 and preschool through 12th grade special education endorsement. I am QUALIFIED. This option would need to be thoroughly planned out and orchestrated. I would NOT use the Home Choice Academy program as it is not appropriate for Luke. I would need a break from the kids each week and they would need to be around and socialize with other kids too. I would need to find some type of home school co-0p that would support homeschooling of kids like Luke. The adult support would be great too. I don't know if this is the answer, but it is an option.

I did try and get a 2nd grade teaching job at the Christian school so I could get the educator teacher discount so we could afford to send the kids to school, but it didn't work out. I am TRUSTING God that He sees the WHOLE picture and HE knows what is best for our family.

I would LOVE to hear thoughts or insight into these unknown school choices. You could post in the comment section or email me at misscarissa@hotmail.com

Bennihana Delight!

For my birthday, my Mom and Roger took the whole family to Bennihana for a special dinner. We had the absolute best time! We had the whole table to ourselves which was wonderful. Luke was beside himself watching his very own "Iron Chef" cook his dinner right in front of him. He was yelling and clapping and laughing...it was hysterical. Grace thought it was awesome too, but in a much more reserved fashion, although I should mention that she is still talking about it so it left a great impression. Miss B LOVED it! She was clapping and bouncing and shoveling fistfuls of fried rice into her mouth and signing "more". It was the cutest thing I have ever seen. It was a long, perfect dinner and I was so thrilled to share it with my family! Thanks mom for the memories. I loved every minute of it!

This kids menu doubled as a chef hat!

Bella having her appetizer bottle before the main course.

Grace donning her chef hat but only for the picture.

Luke attempting to use chopsticks. Go buddy!

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!

A Loss of Vision

I have been on a bit of a blogger break. That happens from time to time when I have to process news that is difficult for me. The news this last week wasn't what I expected and I have felt devistation.

Luke had another appointment at Casey Eye in the Glaucoma department. He has been taking visual field tests over the last year. There is a learning curve to these tests. This last one he took, last Tuesday, was the first one they actually counted. It showed that he has about half of the vision he should have peripherally. The specialist is now referring us on to a specialist in retina genetics. Even if they happen to find out what is causing this loss of vision they don't believe that there is anything they can do about it.

So...I cried, and I cried, because as his mom...I AM scared. I haven't done this before. Mark and I look at each other and ask "How do we do this?" How do we parent a child that is losing their eye sight? I will tell you one thing....IT CHANGES how you think. It almost feels as if we are frantically trying to give him as many "visual" experiences as we can so that he can have a frame of reference if he can't see. That is the reality of it. It totally sucks.

I took my students to the library last week. One of my students found these books tucked away and he brought one to me. It was a children's book written in braille. It took everything in me not to break down in the middle of the special ed library. "Is this my future?" I thought to myself. I sent my student to read with a staff assistant because I couldn't. I am not ready.

Life is continuing to move on. It does that. It doesn't stop for those of us feeling sorrow or despair. It requires you to dust off shoes and keep walking even if you HATE the path that you are going down. The only peace I find is that I know the LORD knew all of this before time and it is not a surprise to Him. He is able to help this mommy be exactly what LUKE needs me to be.