Week #24 & #25 @ The Dahlhouse

Weeks #24 and #25 were a blur of activities.  The beginning of week #24 had all the Dahl kids saying goodbye to their classmates as school came to an end.  The three of them each had an amazing year!  We are proud of the growth they all experienced and look forward to next year at Cornerstone. 

Blessings come in all shapes an sizes, and this one is no exception.  Bella has been so sad about leaving our big play structure behind when we moved in January 2016.  Many tears have been shed over that play structure (especially when we found out that the new home owners chopped it up and dragged it out).  It, however, was too large for our new backyard.  One of my friends, Kim, posted on Facebook that they were giving this structure away for free if we took it apart.  Thankfully Mark is very handy.  Bella is thrilled with the new play structure, and it is the perfect size for our little backyard.  I especially like the covered rooms underneath and up top. With all the rain we get in the Pacific Northwest, it still means Bella can venture outside in rain boots.  I am certain Matthew will be following her shortly as we have discovered he is an outside kind of guy.  Thank you Kim! 

The middle of the week, I took all four kiddos to Luke's Casey Eye Appointment.  It is always an adventure with my bunch!!!  Good news is Luke's eyes remain stable.  The doctor actually allowed me to view what his glaucoma looked liked.  I also got to compare his eye photographs from years past too.  It is very interesting.  We all rode the tram up the hill, viewed the fish in the tank, and watched Cars in the exam room while waiting.  Matthew was pretty good up until the doctor came in.  He decided to have a blow out!  I took him to the bathroom that resembled one you would find on an airplane (seriously people it is a children's hospital) and used 10,000 wipes on a kiddo that needed a serious bath.  I couldn't find the plastic bags and the only spare outfit I had was a one piece sleeveless number. It was 60 degrees outside. I was laughing in the bathroom...because what else can you do?  We all survived the traffic home.  Memories.

VIPKID continues to go very well for me.  I love working out of my closet.  I sometimes have to remind myself that this whole thing is REAL!  I have an online job where I teach the sweetest kids in Beijing, China.  I have even built up a steady clientele of regular students.  One thing is for sure...we have FUN! 

I continue to heal after my bout with skin cancer.  I have a nice scar that will be a reminder for the rest of my life.  I have decided though that the scar means I survived.  I will proudly wear it as a reminder that God has things in control.  I won't leave this earth one minute before I am supposed to.  At times my shoulder is tender, but I am able to do more thing with my right arm now. 

I am soaking up every moment I can of his babyhood.  I love that he still lets me rock him to sleep.  I cherish the time. 

We celebrated Father's Day even though I ended up sick and I was the one that took the nap.  LOL.  We are all so thankful for Mark and the wonderful father he is.  We love you babe.

Mark transitioned back to traveling with the trains.  It means we are all in a period of adjustment.  Some of us are doing better with the change than others.  This first week back was rough (not.going.to.lie.)!  I have declared Monday's library day.  I finally found our adorable little library in Battle Ground.  The kids love to go and pick out books.  I am teaching Luke and Grace how to use the Library catalog, and how to search and put books on hold that they want to read.  I think they are getting the hang of it.

Still searching for the perfect laptop.   Suggestions?

Longest day of the year.  This is the view from Matthew's bedroom at 9:30pm. 

This boy LOVES outside!

Our newest rabbit addition...Pixie!

And finally...our favorite photographer took my kiddos 4th of July pictures!  We love you Brienne!  You are amazing.

A sneak peak! 

5 Things About Being A Speical Needs Mom Revisited

Out of every 5 households, 1 child will have special needs, which can be a physical, cognitive or medical disability.  That's about 10 million children in the US.

Luke is one of those kids.  Grace is one of those kids.

Luke has several disorders.  Early childhood onset glaucoma, microcephaly, ADHD, Tourette Syndrome, sensory integration difficulties and visual and auditory processing needs.  After many, many doctor's visits they have determined that there is no syndrome that links anything together, but that Luke kind of hit the lottery, so to speak, of congenital issues.

His disorders (or special needs) have caused medical and developmental problems.  He has been in physical, occupational and social therapies.  He has had 3 ear surgeries and heart surgery to close a hole in his heart, CAT scans to look at his small head, eye procedures, music therapies, and behavioral therapies.  He has been through more doctor specialists than I can count or remember.

Grace has obsessive compulsive disorder.  We have been through a lot of testing to rule out certain things.  She struggles with academics but gives her best effort.  At the onset of her diagnosis we went through two and half years of therapy to help her with the anxiety. 

Raising a special needs child, is a blessing and a challenge.  It is rewarding and trying.  It is inspiring and defeating.  It is like you can't have one without the other.  You take the good and the not so good.  I sometimes long to feel "normal" but have accepted that my "normal" is "not normal" and I am ok with that.  Many people will tell me what an excellent job I do with Luke and Grace, and how blessed they are to have parents "like us" but I often feel I am just so blessed to have them in my life.  I don't feel like I am anything special, and most days I feel that I am just "not good enough".  I yelled when I shouldn't have or didn't do enough activities with them.  I fail on so many levels, but I am human.  I am a mom.  A special needs mom.  Mainly though I just like to be known as...Luke's mom and Grace's mom and Bella's mom and Matthew's mom.  As a mom of children with special needs, I often feel a myriad of emotions.  I wrote a post like this one four years ago and I wanted to update where I am at now and share MY "real" honest thoughts about how I feel as a special needs mom.  Maybe you can gain some insight into how it is to be a special needs mom. :)

1.  I am tired...just being a mom is exhausting.  Especially to little ones.  However, parenting special needs children takes things to another level of being tired.  On top of the "normal" parenting things you do with your kiddos, you add therapies into your schedule.  While they may attend formal therapy once a week, there is practice and things to do at home several times a week.  We may visit doctors and specialists several times a month.  Sometimes I feel I live at the orthodontists office, especially now that Luke has braces.  As a kiddo with sensory issues, Luke often has a difficult time with all the weird stuff in his mouth.  Last month, we had a big check up on Luke's eyes at OHSU.  Matthew had a 9 month check up, and there were a slew of other doctor appointments including chest x-ray's for Bella.  If its not the medical needs it is the educational needs.  I have been fighting (what seems like a very long time) to re-instate Luke's IEP (Individual Educational Plan).  I finally have a meeting to begin the evaluation process on Monday.  I keep emailing, I keep advocating, I keep fighting even when there seems to be no fight left in me.  I am ALWAYS advocating for him and Grace and Bella in all realms of life and making sure each child receives what they deserve and need.  The NEW news is that Matthew is about to undergo a full developmental evaluation due to the fact he has some issues that have concerned me (I've only told Mark and my mom).  I took him to a screening and he is being referred on to the Infant Toddler Early Intervention Program.  And while I am thankful we live in a place that has such programs, I am concerned about the thought of added therapies.  The emotional toll of all I carry, causes me to be tired.  I am a worrier by nature and I spend many hours thinking about my kids and trying to come up with possible solutions, new therapies, researching, praying.  Some of my recent thoughts include: what new foods can I give Matthew to help with his sensory issues, what can I do to encourage him to try saying new sounds, how can I help Grace and Luke be more organized...(just to name a couple). 

 2.  I am jealous...I almost didn't put this one down...again.  You can read my post four years ago about what I was struggling with here.  I thought about this again, and sadly it is still SO true.  I don't want to admit that I am jealous, and I thought perhaps in the last four years I have grown and this no longer applies.  But I am being HONEST here.  I feel jealous of moms whose kids can play on typical sports teams, school sports teams or have children that don't always finish last with physical activity.  I feel jealous of moms who don't have sit beside there children and coax them to try their homework, and then don't have to email all their teachers to let them know what they didn't complete.   I feel jealous of moms that can go away for a weekend.  I tried to go away for two nights to an adoption retreat.  Oh how I needed it.  But, I made it one night before one of my children ended up in the ER and I came home.  I was so glad they were ok, but I cried for a couple days because I felt so disappointed that something I looked forward to for so long (the retreat) was over for another year.  I am jealous of moms that have a dozen babysitters on speed dial (or even one).  I get that we have four kids and it is a lot, but having a babysitter that was available would be amazing.  I keep praying about this.  My kids are so wonderful, but they can be difficult.  My mom has been very helpful watching the kids and offering to watch the kids (which I appreciate more than I can express), but she works full time and is tired and sometimes we need someone last minute.  In the last four years, I have also experienced jealousy of moms who still have there fathers.  I miss mine everyday.  Anytime I watch a father hug his daughter, it's there...jealousy.  I just plain miss mine.  He was always full of great insight, help and support.  I grieve still that he isn't here to have a relationship with his grandbabies.  He would have been and amazing grandpa.

3.  I feel alone...  Most days I spend completely alone (with my kids).  I am more comfortable in this role than I was four years ago, but I would still echo as a special needs mom I feel alone.  Mark works a weird schedule these days, so when he goes to work in the morning I don't have much contact with anyone who isn't a therapist, a school teacher, a doctor or specialist.  I try and visit a friend once a week, but it doesn't always happen.  I could use the support of other moms with children who have the same type of issues.  That is why the Called to Love Retreat has been so wonderful for me.  I can physically see that I am NOT the ONLY one who is walking this path.  We recently began attending a new church, and I am happy to report that there is another mama who is walking my same path at church. Which is an amazing blessing! I am hopeful that perhaps we can connect more because I could sure use her friendship.   

4. I am human...I am not a saint, even though well meaning people do try and tell me I am.  I have bad days, off days, days I feel like I am failing and think I am not doing a good job.  Being a special needs mom has really re-shaped my life in many, many good ways.  Luke and Grace have helped me discover who I really am.  I have realized that I am a lot stronger than what I thought.  I have learned to be pushy, confrontational when I need to be, how to fight, speak and advocate for those who cannot.  In the past four years, I have also learned that I have limitations, and it is ok to admit when you need help.  I am in therapy currently for anxiety/depression, and I sought out the help of a doctor and I am on medication.  I am human.  And I am ok with it.  Both therapy and medication have helped me in a huge way.  I no longer spend everyday crying, I don't feel like I am the verge of a breakdown, I am not in a constant state of worry, and I am not over analyzing every weird twinge or symptom in my body.  I still have dreams of things I would like to accomplish, but for now I would settle for reading a book, painting or going to the spa. (A mom can dream right?)

5. I am scared...This one is difficult to admit too...still.  While I don't dwell on this thought too often, it is part of raising children with special needs.  I am scared that I won't do something or find the right therapy for them.  I am scared Luke is going to be blind someday due to his glaucoma.  I am scared I won't know the right things to say when we talk about their adoptions or know how to answers their questions?  I am scared I am not doing enough or that I am doing too much?  I am scared when Luke goes to school that other kids are mean to him, or he doesn't eat his lunch cause he talks too much, or that he isn't following the rules.  I worry Grace isn't turning her work in or she is distracted.   I am scared that time is going by too quickly...moments are passing I won't ever get back.  Have I been enough? done enough? loved enough? advocated enough? taught enough? played enough?

My life is forever changed (for the better) by raising Luke and Grace (and Bella and Matthew too).  They bless me in ways that I can't explain.  When I look into Luke and Grace's eyes, and I see how happy they are, and then I think of the alternative (which I can't describe), I am blessed....a hundred times blessed...to call them all mine.  Every time I break up an argument, model appropriate behavior, remind him "he is not the parent", ask her to "finish the job," tell them "no" or the million other things I do, I remember that God according to His plan choose us for them.  I don't take that lightly.  I was called to this "position"...to take up my weapon and fight for those who cannot.  I know that the mere existence of Luke and Grace is a promise that God has a BIG plan for their lives.  I really believe it.  So even though it may not look so pretty in the trenches, I am there, I am fighting.  I am real.  I am THEIR mom. 

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.  

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!