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!!