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!
Monday, July 11, 2011
Sunday, July 10, 2011
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!
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?"
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!
Saturday, July 9, 2011
ILS (Integrated Listening Systems)
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!
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!)
Tuesday, June 28, 2011
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!"
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!
Monday, June 6, 2011
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.
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!
Disneyland 2006
Disneyland 2007
Disneyland 2010
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!
Wednesday, June 1, 2011
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!
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!
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