Week #37 & #38 @ The Dahlhouse

I am attempting to get "caught up" on our happenings at the Dahlhouse.  So I am squeezing a couple of weeks together.  Week #37 and #38 were filled with appointments.  Seriously how do we have so many appointments???? One week it was 8...yes 8 appointments...the other week it was 6!

Repurposing some older furniture for newer little people.  The white cubbies used to be Bella's with green and pink bins.  I bought new bins at IKEA and used my Cricut to cut out his name and the Batman symbol.  I was really happy with how it turned out and now it is holding toys and books!

When you have older sisters...enough said!

Decorating the front of the house for fall.  My favorite time of year.

Lots of VIPKID.

The smoky filled Gorge from the Eagle Creek fires.  Mark drove me up to see the Gorge (from the Washington side) after we had some rain.  The smoke was still very thick in the air. We were able to drive home the Oregon side after they had just reopened I-84.  There is a lot of loss, but there was still a lot of green.  It was good to see.

Man Cub "helping".

Computer work

TV watching

Teeth flossing

Someone got their braces off!!!!

Someone went to the dentist! (That someone HATES the dentist).

Noodles!

Some serious Wii playing going on.  I love that Matthew thinks he is playing.  I also LOVE that my olders include him in their play.

Baby in a box.

I had my mole mapping down at OHSU.  I was not prepared with how vulnerable I felt.  There were two female medical assistants with me. You stand completely naked in this booth with NINE different cameras pointing at you.  The TV screen takes you through how to pose your body into 7 individual poses so that photographs will capture all of your skin.  After it was finished, I paid the $150 dollars (insurance doesn't cover it) and then you wait for your photos to be downloaded onto a flash drive.  After it was all over, I cried.  Its the journey.  One foot in front of the other.

I did have these two people waiting for me when it was over.

The perfect end to a long week.

Discouraged...but still fighting

Sometimes when it rains....it pours.  This was true this past week.  The week started typical...Monday morning errands and such.  What the rest of the week would entail, would be absolutely unbelievable.  Through the process of researching Luke's most current IEP, I discovered that the school district was not providing services listed on Luke's IEP.  He had been missing 45 minutes of services per week.  Not only was this a HUGE oversight by the school district, it is illegal.  Luke is entitled to a free and appropriate education and they failed to provide that.  The director of special education is involved now and I am seeking restitution for the missed services and service time for Luke. 

This situation leaves such a bad tasted in my mouth.  I entrusted my son into their care.  I even spent time talking with the staff at the school before I enrolled him to let them know my concerns, thoughts and apprehensions.  They broke that trust and now I feel that I have to check and double check just to make sure Luke is getting his services and they are doing their jobs. I just always feel like I am fighting and fighting and fighting. If I let my guard down for one minute, I feel that something horrible might happen.

This situation has caused me to question everything.  Education, special education, IEP's, what really is important in the education of a child.  I am left feeling empty, confused and sad.  It even makes me wonder why we have special education when staff doesn't care to read or follow the IEP (Individualized Education Plan).  It is absolutely disappointing.  I think was is the most frustrating for me is that the school district and teachers were cheating my son, Luke, out of what was legally and rightfully his.  Really!!! They are messing with my baby.  He has been through so much, and to now to have those that are supposed to be protecting, educating him and helping him, not even follow through makes this mama MAD (to say the very least).

On the home front...I am really missing Mark.  He is gone a lot and I am left to ease the feelings and actions of 3 little people who miss him dearly.  When Mark was home this week, it seemed everything and everybody was just pulling him away from spending a few minutes together.  His phone would ring (a friend), his phone would ring (friend from work)...van had a leaky tire, the neighbor needed his help, the neighbor needed advice, the church needed him to go down to the bank to sign some papers for something, etc, etc...

To top it off, the one night we had together with him home this week Bella got sick.  Of course, Friday night, she would not be feeling well.  She wouldn't go to sleep and had difficulty staying asleep. Up at 11pm, up at 2am, up for the day at 4am.  I knew right away she had an ear infection.  Got up Saturday (well waited for Urgent Care to open) and took her to the doctor.  DOUBLE EAR INFECTIONS.  The doctor said her ears were bright red and bulging.  This is her 4th ear infection in less than a year.  I think we have ear tubes in her future.  It might be time to call Dr. Wilson.  Ughh.  My poor baby.  Mark's train was called when Bella and I were still at the doctors, so we missed spending time with him again.  Thankful for both Grandma and Mimi, who stopped by today. 

Tonight I was supposed to get to go to a girl's night...a night off.  I had a babysitter and was really looking forward to grown-up conversation and a time to vent, laugh and not have responsibility for a couple of hours.  But..due to the ear infections it didn't happen.  I really needed that break too.  Oh well..Bella needs me and I am where I am supposed to be...but I can feel disappointed.  Another time.

So that is my fantastic week in a nutshell.  I am believing next week will be better.  Despite all the difficulties I am thankful for so many things...a home, my children, my husband, a place where I can access medical care for my child on a Saturday, friends that care and grandmas and Mimi's that stop in and help out.  Tonight I am thankful to the doctor who prescribed numbing ear drops for my baby, so that for the first time in 4 nights I will be able to get some sleep in my bed and not sitting in a rocking chair.

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!