Losing Sight

Sometimes...the routine of the day is exhausting.  There is never a dull moment with the crew I have.  Everything I thought I knew about parenting before we adopted became useless when we welcomed the kids home.  Luke has challenged me in so many ways, and it is because of his challenges that he has caused me to grow up, to be more, to do more, to push myself harder and farther than I would have.

I thought I had already gone through so much with Luke before the beginning of 2011.  There have been the ear tubes and adenoid surgery times 3, heart surgery, more therapies that I can remember at 4 different therapy centers, ADHD, micocephaly and sensory processing disorder.  He was on IEP and I thought I had been doing a pretty good job advocating for him.  Then came the challenge from the Lord.  To really get to the heart of the issues.  To dive into and really explore the issues that Luke was having.  That led to a diagnosis of Tourette's in January, Glaucoma in February, a new IEP in April, and Auditory Processing Disorder in May.  By the time school got out, I was EXHAUSTED.  I felt like I was just bracing myself to keep upright.  "Was this it?"  NOPE...Luke's glaucoma doctor was concerned by the amount of vision loss there was and sent us to another specialist.  A traumatizing test for Luke, and finally we have settled into a routine of therapy on Tuesdays and iLs therapy during the week at home.

Sometimes after a long day of parenting, after I sometimes feel defeated or that maybe I could have handled something different, I reminded about the path that God choose for my kids.  Luke is exactly where God wants him to be.  He placed him with us.  Sometimes I question my ability to parent a child that is losing their SIGHT.  How do you do that?  I know that it is not fun to think about.  But it must be thought about.  This past May I actually called the School for the Blind.  I had to face reality that their services were going to be needed by son at some point.  They have advocates that come into the schools that provided services to kids like Luke.

The TRUTH is I believe that God has the ability to HEAL Luke completely, but also know that sometimes God teaches us things through trials.  As Luke and I were walking hand in hand one night in Disneyland this past June, we talked about making a "mental picture" or "movie" of what we were seeing. I described the lights and people and the smell of waffle cones and popcorn.  I told him that we needed to remember this time at home. I think the more "mental pictures" Luke has the more he will be able to draw from in the future.  Took everything in me not to melt into a puddle right in the middle of the Happiest Place on Earth.  The tears rolled down my cheeks at the thought of him losing is vision and not being able to see things.  How many times do we take for granite that we can see, or hear or taste, etc?  I know I do.  But because of Luke I am able to realize now the gift of SIGHT.

Blogs of Note

While reading one of my favorite blogs weloveourlucy.blogspot.com I came across another blog that touched my heart.  It is called Storing Up Treasures.  If you would like your blog to be featured on Storing Up Treasures in the Blogs of Note go ahead and visit the site by clicking the above link and then "Blogs of Note" in her bar at the top.  She has some incredible blogs in that list that will touch your heart.

OUT with the OLD....and IN with the NEW

So....we bought a new van! (Well new to us...used by the car world standards).  It is...surprise, surprise...another Honda Odyssey.  This time it is a 2006.  I have to admit I was quite attached to the "green" van (pictured on left).  It held everyone of my foster kids and brought home Bella from the hospital.  It kept us safe when we were re-ended by a reckless driver on I-5.  It took a lot for me to get used to the idea of "another van".  It wasn't the van we set out to by, but it is a van that God brought to us and it feels RIGHT.  So we will bid farewell to the "green" van when it finally sells (still waiting for Mr. Dahl to put new brakes on it before we sell it).  It will be a bitter-sweet moment.

 The new van is AWESOME.  I am so thankful to God for providing us just what we needed.  The kids are excited and everyone is separated (which is a good thing).  Luke has his own little "secret agent" seat, as I call  it in the 3rd row and the girls are in captains chairs in the 2nd row.  Grace is in heaven because the new van has windows that roll down in the 2nd row.  She thinks that is absolutely the best feature!

This is also a van that technically seats 8.  This is a picture of the 2nd row and it has a special quad seat between the two captains chairs.  It is a cool little feature.

Decisions..Decisions...

The last couple of years, making any type of "major" decision has been very difficult for me.  I think I spend too much time making pro/con lists and trying to think of every issue or hiccup that could come up.  Because of that I talk myself into and out of things because I am afraid of "making a mistake."  No more has this ever been more true when it comes to decisions that revolve around "MY CHILDREN".  I often feel a HUGE amount of pressure to not make any mistakes with them because of their history/past and all the issues they are dealing with.  You have seen examples of my indecisiveness  in my posts especially regarding school choices for Luke and Grace.

Mark and I have finally come to a very long and difficult DECISION regarding the school placement for the kids for next year.  Both Luke and Grace will be attending our neighborhood public school.  It pains me to write it.  It means that I will turn down a $3600 dollar scholarship for them to attend private Christian School.  We were blessed to be given this scholarship through "His Helping Hands Foundation".  Even after the scholarship it will cost us almost $1000 dollars a month to have them attend Christian School (rest of tuition, gas, hot lunch, extras like photos or book orders).  The truth is....the DIFFICULT truth is....admitting we DO NOT have that money.

More TRUTH....it leaves me feeling like a FAILURE.  In my mind I think..."what is wrong with me that I can't give a Christian school education for my children? They deserve it.  They've been through so much...etc.  My parents provided a Christian Education for me."  The facts are really 2 things.   First, we just can't afford it. Second most private Christian Schools do not accept kids like Luke that have special needs.  Not because they are wrong...they just do not have the ability to meet their needs.

So...it's time to move FORWARD and to LET IT GO.  I have to accept now that this is our path, that GOD, the creator the universe, knows my children and their needs and will protect them and uphold them and put the right people in their paths that will help them in school.

I am reminded in the midst of our school decision, in the midst of unknowns about Luke's eyes and sight loss, in the midst of Grace's speech difficulties and every other issue running around in my head...that God is LEADING me..He hasn't FORGOTTEN me and HE  has me on his mind.

"Yet I will not forget you.  See, I have inscribed you on the palms of My hands." Isaiah 49

Update on LUKE's Eyes

After a mostly sleepless night, a trip to Safeway at 12:30am, and finally drifting off around 2am, we made it to Casey Eye.  After rushing because we got lost (go figure we were there two weeks ago), we still ended up waiting nearly 45 minutes to be called back.  We worked with 6 different people (2 nurses, 2 doctors, 1 resident and 1 student in medical school).  OHSU is a teaching hospital so it is common for students/residents/interns to be present at your appointments.

We had one hour of eye testing with Luke, checking of the eye pressures, his vision, etc.  Then we had one hour with the genetic counselor where I got to re-live Luke's medical history/ developmental history/ educational history/ family history etc.  About 15 minutes in to the history, I had Mark take Luke out of the room because they were asking questions about his birth and early life that he doesn't need to know yet.  He of course knows he is adopted and his history through Grandma Carol's (first foster mom) and then to his forever home (us), but he doesn't know that he nearly died, and all about his failure to thrive and such...so at that point I excused him and Mark from the room to go play.  I am really good at speaking up and making sure Luke's best interests are protected, and that his needs are at the fore front of all his medical care (just part of being an advocate).

We made it through the family history and the Dr. Mark Penessi came in.  Apparently he is a retina "genius" and the #2 doctor in the nation when it comes to retinas.  Didn't know this prior to the appointment.  He gave Luke a thorough eye examination, and then shared the results of all the testing they did.  We are HAPPY to announce that Luke's retinas are NORMAL and HEALTHY and his retinas are NOT what is causing the vision loss.  On the down side...we still don't know why he has lost so much of his peripheral vision (his vision loss pattern is not following one typical of Luke's stage of glaucoma.  Although it is possible for this atypical pattern to present in glaucoma, it is just not common.)  So....next appointment is August with Dr. Edmunds back at Casey Eye on the Waterfront.  We are just so THRILLED that this was a GOOD NEWS day!  Thank you Lord for your provision and hand on Luke.

I am exhausted, my body aches from being so tense and nervous about what was going to happen, plus I haven't slept well in four nights.  Friday night Bella threw-up, Saturday night Grace was up screaming with ear pain, and last night I just couldn't relax.  Of course as I got everyone ready for bed I noticed Bella was warm. Took her temperature....101.0  Great!!  What is next?  I don't feel like I can even handle an ear infection at this point.  Maybe it will be better in the morning after I have had some sleep! I appreciate all your support and prayers.  It means so much to me to read everything you all write.  It is AWESOME encouragement!

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!