Disney World 2017

Okay, so let's talk about Disney World.  Yes, we did go to Disney during one of the hottest and busiest months of the year and we survived.We truly had the best time ever during our time there but I have to be honest and say that experiencing Disney with children who have special needs is HARD.  All of the things that are hard for the rest of us-the heat, the lines, rude people.  Did I mention the lines?   All of that is even harder for them.

We rented a special needs stroller for Miss Angela and that was the best planning decision of the whole trip.  She never could have done the trip on foot.  We found a great company that delivered the stroller and picked it up on the day that we left.

On the first day, we were given a Disability Access Pass for Angela.  We were impressed at how easy it was to use the pass on the rides that she rode.  They never split our group of eight and we were able to all ride together.  The stroller was identified as a wheelchair and the staff had it ready at the end of the ride each time.  Our girl was truly treated as a princess and the Disney cast called her Princess throughout the trip.  I am sure it was in their training, but it really made her feel special.  And then, one of them handed her this note:

Splash Mountain, Space Mountain, Thunder Mountain.....she loved them all.  Such a crazy daredevil!  It was so fun to have our kids together in one place, along with our grandson, Ezra.  There is nothing better than to witness your kids' love and devotion to each other and this was us.  I am bragging but we really have a great bunch of kids.

I was a little bit sad when we returned home and some of the kids went back to their homes. Even now, I miss them.  So much fun!  I will leave you few more pictures:

HEMICON 2017

     I don't want to let too much time pass before I share about our trip to Orlando for the 2017 Pediatric Epilepsy Surgery Conference and Family Reunion.  Not that I could forget a single moment of it. You see, this is the one time each year that we are together with people who understand EXACTLY what Life After a Miracle truly is.  They are living it too.

     Angela could not wait to get to Orlando to see her special friend, Levon.  This is what their reunion looked like:

It was so good to see the two of them together.  Levon underwent a Right Hemispherectomy and Angie's surgery was a Left Hemispherectomy so we joke that they are a matched set.  They have a unique friendship and it warms my heart to know she has friends who truly get her.  We were all pretty excited to get to the conference and see this too:

 The kids loved watching other families take photos in front of their poster.  We felt honored that Angela's picture was on the poster this year.  The conference sessions were "top notch"-to borrow one of Angela's favorite phrases- and I gained a lot of new knowledge.  I can't fit it all in here but one of the things I did not know is that children lose some function on their "good" side after hemispherectomy surgery.  I had no idea!  That fact came from my friend Monika, who is brilliant and who led the Brain 101 session.  I also learned volumes about IEPs and writing ambitious goals.  Oh dear, give this girl a little more knowledge and she might become dangerous!

The conference ended with a wonderful Pirate Party, complete with disco dancing.  Yep. This 80's girl was in her element.  We had so much fun!!

 It was hard for Angela to say "See You Soon" to her friend Levon, and new friend, Lola whom we had the pleasure of meeting this year.  The three were pretty inseparable the entire time and they had loads of fun.

Throughout the conference, Toby and I repeatedly told each other how grateful we are for the work of the Brain Recovery Project.  I cannot say it enough.  The BRP provides advocacy, resources, and research to families whose children have experienced brain surgery for the treatment of epilepsy.  They work tirelessly while caring for their own children and attending the endless appointments that are the result of our children's circumstances.  We would be floundering without this work.

We ended our time in Orlando with a trip to Disney World but that will have to be saved for another day soon.

Our Boy

     I am always grateful when I am out and someone asks me how Levi is doing.  I know that it can be hard to know what to say to someone whose child does not live in their home.  I have been there too.  You don't want to say the wrong thing, appear awkward, or embarrass anyone.  Please know, though, that although the decision was one of the most difficult that Toby and I have made in our years together, we are not embarrassed or ashamed. We made the best decision for Levi and for our family so that everyone's needs can be met.  I think of it in terms of medical treatment that a child might need -we would never withhold medicine from them so why avoid providing developmental, daily living, and educational support when it is needed?

     Levi lives in a group home setting in a great neighborhood.  He is just over an hour away from home and he is home with us every other weekend.  We are excited to have him come to Florida with us next week and it will be fun to spend more time with him. He goes to a public school and he is taking drum lessons and attending a church youth group. He regularly goes to the pool and the skate park.  He is more like his peers than he is not and he is THRIVING.

     We have noticed a new maturity when Levi is home with us and we have seen huge growth in him.  He has learned strategies to manage his behavior and to avoid becoming overwhelmed.  He is thoughtful and respectful to his siblings and to Toby and I.  His teachers and the staff at his home have taken a special interest in helping him to be successful and it shows.

     Earlier this year, we met with Levi's teachers to decide whether he should be on track to receive a traditional or a modified diploma.  They felt strongly that Levi can achieve a regular diploma and we agreed with the knowledge that we can make a change later if needed.  Months later, we are planning for him to transition to a large public high school closer to his home because he no longer needs the extra support of his current program.  Last week, we received Levi's report card and he received a 4.0!!!  All traditional classes and coursework.  There are no words to describe my pride in his hard work and determination.

     So, when you ask, this is how Levi is doing.  He is working hard to overcome the challenges that are the result of his birth mother's poor choices.  He is a smart, kind, respectful young man and I believe he has great potential to make a difference in the world.  I am so glad that you asked:)

My Heart

We went to Astoria today to take my dad his Father's Day gift of three Koi for his backyard pond.  We had a great visit and then we (Toby, Angela and I) stopped at Fort George Brewery for dinner.  If you have not been there, you should go.  The atmosphere is relaxed and inviting and the menu is great.

The owners of the restaurant set up a play space with toys and games in a corner near our table.  At first Angie did not want to play but then three boys close to her age entered the play area.  She decided to join them and Toby and I watched while we waited for our dinner.  Those boys are lucky I did not kidnap them.  They came close to Miss Angela right away, asked her name, and started helping her with the games that were out.  They smiled, laughed, high-fived, smiled, fist-bumped, and played.  At one point, one of the boys came to me and said, "Your daughter is SO cute."  Those boys acted like she was the best thing since cell phones. Angela asked us to get her a box because she did not want to stop playing to eat.  We spoke to the boys parents before we left and they were just as enamored with Angela as we were with their sons.

Let me be very clear........we have moved past the idea of being grateful when children play with Angela.  Why should we be?  She is funny, kind, sweet, engaging, social, and so much more.  This is a challenge, I think, for many parents of children with special needs.  Here is what we have decided-kids with special needs are more like other children than they are different.  They have so much to offer other kids, and these boys knew it.  I think the idea of typically developing children avoiding children with special is needs is born in the minds of adults.  Kids do not care.  There are exceptions of course but we rarely experience kids being unkind to our girl.

Today was a good day.  I loved watching Angela play with her new friends and to see their delight in her.  We have had some tough days lately and I am grateful for the reminder of our girl's ability to impact others with her amazing spirit.  And, as a bonus, I ran into my beautiful cousin Meghan on my way out.  It was a very good day.

Miss Angela is definitely keeping us on our toes. As the school year comes to an end she is struggling, I think, with the transition.  Her behaviors have increased and I have to admit that I am tired.  I am not a young mom, as she reminds me regularly:)

Angela has had an uneventful recovery from her surgery.  She tells us often,  "I am so glad that I got my stitches!"  She is healing well and it is such a relief for her to no longer be in pain.

We had a meeting to discuss eligibility for Extended School Year services for Angela.  Although she is technically eligible, we have declined the services for her.  I know this sounds strange but let me explain.  We have decided that Angela would benefit from other experiences that we have planned for her over the summer.  She will be having weekly Occupational Therapy with her long-time therapist, Laura, at the hospital in Portland.  In July, we will travel to Orlando for the International Hemispherectomy Conference.  Angela will have a comprehensive reading evaluation there that we will share with the school to guide her services next year, not to mention her first trip to Disney World!! Angela can't wait to start swimming lessons with some of her favorite local teachers and she will have endless opportunities to hone her social skills.  Everywhere she goes, she will be learning.  We appreciate everything that our local school does to accommodate Angela's needs and she will have some activities to ease her transition back to school at the end of the summer.  We are very fortunate to have such a caring, knowledgeable team who truly loves her and has her best interest in mind.  I can't wait to see her growth over the summer!

Last weekend, Angela celebrated the sixth anniversary of her hemispherectomy surgery, on the day of Toby's 50th birthday.  I am not exaggerating when I say that the surgery saved her life.  Her doctors literally told us that they would not be able to stop her next major seizure.  There really are no words to convey how very grateful we are for her life on a daily basis.  She is such gift.  Thank you for reading our story.  We so appreciate the positive comments and support as we continue on the journey with our amazing girl.

Angela had her 15th laser treatment for her port-wine birthmark today.  The treatment has sparked a lot of different thoughts for me:

1) The Oregon Health Plan does not provide adequate care for children with special needs.  Angela has an open card, rather than one of OHP's managed care programs.  The open card presumably provides the most options for care and providers.  For the past 15 months, OHP has denied Angela's doctor's repeated submissions for authorization for the laser treatments.  Despite her diagnosis of a progressive disorder and multiple pictures and letters sent by the doctor OHP decided that she no longer needs treatment.  Her treatment today was made possible by her addition to our private insurance after her adoption.  The doctor noted that she has had some regression in the condition of her skin due to the delays and I do blame OHP for that.

2) Parents who have children with special needs are overwhelmed and working overtime.  Today, as I sat in the waiting room of the surgery department, I listened to parents on the phone making deals with insurance companies, employers, respite providers and schools.  I watched them reassure and comfort their other children and try to appear at ease as they awaited news from their child's doctor.  They looked calm, but I knew better.

3) Children with medical and developmental challenges experience a different, unparalleled reality from the rest of us.  They submit to never-ending tests and procedures and the routine of that becomes comfortable and predictable.  I am so touched by Angela (and others) as she calmly describes the procedure of the day as we drive to the hospital.  She is not scared and she is not shaken.  This is her reality.  But just because it has become her "normal" does not make it easy.  It is a hard life and her courage and strength should not be minimized.  Her experience has made her a bigger, better individual and she is a member of a small, exclusive group of heroic souls.

I continue to learn and grow each day that I am in Angela's presence.  Today was no different.  I am in awe of this brave, strong individual.  She is beautiful inside and out.  Here are a couple of Before and After pictures:

She will recover for a couple of weeks and then will repeat the process in early August.  And two months later......and so on.  You get it.

Rocking Recovery

If there is one thing Angela Hope does well (and there are actually lots of them) it is recovery. I mean she is really rocking it!  Angela had surgery to repair her open, leaking g-tube site on Wednesday after 34 days of severe pain.  From the minute she arrived at the hospital, the staff was on notice that she was IN CHARGE.  We were so proud to see how she advocated for herself to get what she needed.  Toby and I really just sat back and watched her.  She was amazing.

The surgery was a little more complicated than we expected. After eight years of having a g-tube in her tummy, a portion of Angela's stomach had moved into the opening, creating what is called a fistula.  The surgery was successful, though, and finally our girl is no longer in pain.

Angela is resting at home now and she is doing unbelievably well.  She has had almost no pain at all and she is anxious to get back to school and her friends next week.

We are thankful to put this chapter behind us and we are grateful for the wonderful care that Angela has every time she has a procedure.  Since it was recently Nurses Day, I just want to repeat what I have said before......nurses are my heroes!!  They are on the front lines every single day doing the hard, emotional, exhausting work and they are not noticed or honored often enough.  Thank you, nurses!!