Long Overdue

Wow..where did the last two months go!?!?!?!?!?!?!?

I am obviously way overdue to post here and I am VERY sorry that I left you without any news from us for so long.  So much has been going on with all of us that it is really sort of absurd.  I've come to learn either you are in a lull or you are in a whirlwind.   For us that last couple months, it has been the latter.  Well, now that I said that and probably have you worried...let me just ease your mind....there is nothing bad that has happened.  We are just super busy and in a lot of transitions and making preparations for the near future right now.  I'll summarize very quickly in bulleted points.

• Caiden will be attending Sidener Academy for High Ability Learners (a public, IPS school he was invited to attend b/c of his test scores and teacher checklist) next year.  After researching this and attending a parent info session, we were excited to get on board.  He has adjusted well to this coming change.  Now we are eagerly becoming part of a newly established parent support group and working to plan summer meet-ups with other families and an open house night.
• Avery's follow-up visit to Johns Hopkins in April was good.  She is continuing to heal nicely.  These is a bit of disappointment on their parts that she is still having a couple seizures each day, but did agree to let us wean her from the phenobarbital.  She will be down to 1 ml twice per day as of tomorrow.  Then a week after that, she will be off it completely!  Exciting stuff.  While we have seen some differences in her...the jury is still out, so to speak, with regards to how much this might help her progress.  There have been periods of changed or increased seizure activity as we have progressed through the wean, but it seems to level back off.  We just have to be patient.  Dr. Kossoff mentioned that he has seen even surgery take a while to show its effects.  Patience is a virtue....I'm trying hard to live by that.
• Avery turns 3 in July, at which point First Steps services stop and the local education authority (in our case, IPS) becomes responsible for providing special education pre-school services (we know that she does qualify) to her.  She recently had her education evaluation to determine if she qualifies for services (and she does as I mentioned).  That was an exciting process to experience..almost 3 hours of question by school personnel and answers from me about what Avery's strength, needs, challenges, etc are.  Now, the case conference committee (of which we are a part) is scheduled for Monday the 23rd from 12 noon - 3pm.  This is where we will write Avery's IEP and determine her educational placement.  I would be lying if I said I wasn't nervous about this meeting (the process and the placement outcome), but I have been working so hard to educate myself (and Jon too) about Federal and Indiana special education law and best practices, etc to best prepare myself to be a strong and effective advocate for her educational needs and services (OT, PT, speech, vision therapy, O&M, etc.) to support them.  You better bet I know more than I ever though I would when it comes to special ed law and parental rights...and it has become my latest mission to make sure other parent's understand the law and know their child's rights as well. 
• I am still so happy to be working for About Special Kids (ASK).  I absolutely LOVE what I get to do for families from my position there.  I also love the "professional" opportunities that come about and the collaboration with other agencies/therapists/hospitals/etc.  I am absolutely slammed with work all the time...and I still love it!  That speaks volumes...God has led me to the exact thing I needed to be doing...and I am grateful for the opportunity.
• Avery was finally approved for Medicaid disability, which finally allowed for her waiver services to begin.  So now, with the waiver and the medicaid, she is actually cared for by a nurse at our home when Jon and I are both at work.  Additionally, we get some nursing coverage for her as respite for us...so we can run errands, work on a personal project, whatever...As you might expect and understand, each of her nurses are head-over-heals for her already.  They have all been so fantastic with her and have fast become a reliable and respected part of our support team.
• Jon finally received a re-classification of his position, though not as high as they had been fighting for (it's the State afterall).  This has kicked up his income a little bit, so that has been a nice blessing too.  He is still enjoying his job...another point to be thankful for.
• Caiden is lined up to be involved in various summer camps while out of school for the summer and while I am working.  So far, it has worked out well.  We shall see as the summer wears on.
• We are headed this weekend to Michigan to celebrate Jon's grandparents (the Stek side) 60th Wedding Anniversay.  How about that...60 years and still going!  We are excited to get to spend some time with them and other Michigan based family of Jon's...it is not something we get to do often to say the least.  There are many who have never met Avery in person...and I'm certain there are a couple who have never even met me!  Not looking forward to the drive though...though I suppose it will give me time to continue my case conference preparation.
• Then, the last weekend of June, we are headed to Lawrence, Kansas, where a family from the Hemimegalencephaly listserve is hosting a gathering for all of us HME families on the listserve.  We are SO VERY EXCITED about this as you might well imagine.  The emotional benefit of this will be huge...more than I bet any of us will be able to put into words.  To be in the company of other families like ours will be very comforting, supporting, encouraging and empowering.  We will get to see a few familiar faces (a couple families we have met a couple years back at a different type of reunion) and many new faces (though I know them from the thoughts, fears, concerns and ideas they have shared on the listserve.  A bog thanks to Saasha for taking on this task and to her parents for letting us have their Raintree Montessori grounds to meet up and talk and play together. 
• Please keep a couple of my co-workers in your prayers.  One of the other regional F2F parent liaisons, Sonya, lost her husband last week, at the age of 44, from a massive heart attack.  They were still very busy raising 3 boys, one of which has special needs.  She is a beautiful person inside and out and ever faithful and full of support and encouragement to others.  She resides in the Jeffersonville area.  Another of our regional F2F parent liaisons underwent surgery to place shunt to drain excess CSF from her brain (which is caused by a condition she has and has lived with for years).  She had a critical episode that required this shunting to happen now and she is having a long recovery and adjustment to this object in her body.  In addition to that, one of her children also had to have surgery this week and the other have medical issues themselves.  Please raise Autumn in your prayers so that she might enjoy a speedier recovery.  Though she, like Sonya, is deeply faithful and always looking on the bright side of things and belivees deeply that God is with her during this time.

OK, I have to stop here and get myself in bed so I can get a couple hours sleep before work tomorrow.  I sure hope that this update finds everyone in your home and care and network doing well and finding the joy in each day. 

As always, much love to all of you!  Thanks for loving our sweet pea and caring for our entire family!
Holly

Comments

[Janice Waack]

Precious! Thank you sharing the video montage and updating us on your wonderful family.
Hugs to you all!
Love,
Sydney's Grandma

[Jan Stek]

Holly and Jon, It was so great to see an update today. Your video was beautiful!!!!. We are looking forward to seeing all of you in a few days. Safe travels and may God bless your journey, I'll hold you in prayer.