Wednesday, September 25, 2013

Getting our Ducks in a Row

I know, I know, it's been a while.  We've been swamped.
Scarlett got her new glasses!

They are Miraflex brand, bendable, flexible with an elastic strap around her head to help keep them on.  She has been incredibly tolerant of them, so it has been a relief!  We weren't sure we could handle yet another appliance (in addition to hearing aids, ankle braces, feeding tube and walker) that required constant parent management.  These go on and stay on for a while.  Whew!

That was, until she took off running in her walker (yea!), tripped and fell (boo!)  The glasses broke her fall, and kept her from scratching her eyes, which is part of their purpose, but sad for the brand new frames!  They're already in the shop for a touch up.

We are nearing the end of Scarlett's two week assessment period at the local school district preschool.  They have been very accommodating, and we have appreciated not having to get Scarlett the 40 miles to school through heavy traffic every morning.  

That being said, we have already begun preparing ourselves for a very intense time securing her IEP.  We feel very strongly that she needs certain elements in her school day to help her be successful, and it is looking like getting those things will not be easy.  We (primarily Chris, really) are spending our days getting updated reports, discussing issues with the current teacher, conferring with her primary teacher at the other school and meeting with all her other specialists to get our game together.  

At this point, we feel very fortunate to have a very supportive team for Scarlett - her teacher, speech therapist, physical therapist, occupational therapist and social worker all plan to attend her IEP meeting to help us make the case for the services she needs.  We have been quizzed and prepped by various people about how we will handle different issues they bring up in the meetings (we're assuming it will take several.)  We are reading up on how to be proactive, results-achieving IEP parents, and have a plan coming together.  Our goal is to maintain a good working relationship with the district (including many of my colleagues), educate a few people there on Scarlett and other kids with brain tumors, bu first and foremost get Scarlett secured with the education and services she needs.  We'd love to see this resolved quickly, with all parties satisfied...I just see that happening right now.

Luckily, we got a brief break from the paperwork and stress to go to camp!  We love our visits to Camp Arroyo, where we attend Jack's Camp, a weekend for families of brain tumor patients.  We get to go twice a year, and it is a great chance to catch up with friends, relax and learn more about life after the brain tumor.  This years camp had about 15 families, all with kids who are living after brain tumor diagnoses.  Scarlett is still the youngest.  We met several families new to this journey; it is always fascinating to me how different all of our experiences are, but how many similarities there are, too.  So many of us were told our children would die, or given such low chances for success that it is amazing to think we are all there together.

The focus this weekend was mainly on how parents help keep their stress in check.  Everyone there is living with inordinate amounts of stress, including many cases of PTSD, depression and constant grief processing.  We talked about how each of us needs to make sure we take the time to do something for ourselves, something that releases a tiny piece of that stress so that we can better focus on the task of keeping our kids alive.  Some shared that they garden, dance, listen to music or meditate.  I write, so here I am.

It's that time of the year once again - Scarlett's birthday is just a few weeks away!  Our annual blood drive is shaping up well.  Some of the details are different, but the basic goal is the same - donate blood!  If you can't make it to us, please consider giving blood when and where you can.  Cancer patients all over, in addition to accident victims and others, rely on blood donations to survive the near-deadly treatments that they hope will save their lives.  If you are lucky enough to be healthy, they need your help.  Every drop of blood that brought color back to Scarlett's tiny lips, that healed her bruises and brought her blood pressure back to normal, was donated by some fantastic, anonymous donor.


Anonymous said...

I just wanted to say that we all know that Scarlett is an amazing little girl, but God sure knew what he was doing giving her such terrific parents. You guys do an amazing job advocating for your little girl. It seems like this should be such an easy process, but unfortunately as a former elementary teacher, I know that sometimes the school's best interest and the parent's don't always match up. Keep fighting for that precious girl, she deserves nothing but the best. You guys are doing an amazing job. I am glad that you were able to get away for awhile and have some fun at camp. And seriously...could she be any cuter in those glasses!!

child of God said...

Scarlett is getting so big! It looks like she really has a good hand on that walker.

Praying for all these issues you are dealing with and praying for the best care for Scarlett.


Busygirl said...

I'm so happy to see her recent pics. She's getting cuter by the day! She's such a miracle child. Wish the best for your whole family. :)

Pear said...

I read this and thought of you guys. A great post with an awesome tip - bringing snacks to the I.E.P. meetings.

Cyndi Lou said...

I love cheering for Scarlet, and her wonderful parents, thank you so much for the updates! She is so cute in her glasses. Keep on keeping on, mama, you are doing great. Sending our Love, Cyndi Lou and Rosa too(age 3)