The Cool School Days of Summer and Family Update

Hi.  I'm finally sitting down with a little time to write the update I've been promising.  I intend to do a better job from here on out, shooting for at least weekly updates.   That is my intention anyway...life has a way of  happening though and the weeks seem to fly by these days.  It's a reasonable thing to shoot for though.
( A little sibling love)

School is in full swing now for both Avery and Caiden.  I think I mentioned in a previous post that Avery would be starting special education preschool when she turned 3 years old.  She started on July 21st and it is going fairly well now.  A few of this kids have become fast friends with Avery and really interact with her.  That really does my heart so much good.  There were a few problems and hiccups to begin with, but I think we are getting to a good place and in a routine now with school.  And the school has gotten their act together, slowly but surely.  She is attending full day (9 am -3:30 pm) on Monday, Wednesday and Thursday and is receiving an hour each per week of OT, PT and Vision services, as well as 45 mins/week of Speech.  I can't stress enough how much work we put into being prepared and educated about the transition from early intervention (First Steps) to the public school system and Indiana's special education law so that we could best advocate for Avery.  Yet, still, the process was so tiring and stressful.  It is no wonder that so many parents are worked up and scared over this time in their child's life. I feel so incredibly blessed to work in a position where I can help make this period of change and adjustment a little easier and less stressful for some families.  Lord knows these families have enough "natural" day to day stress in their lives.

Caiden's first day back was yesterday.  We went to the school open house on Monday and met his teacher(s)...his classroom teacher, as well as the music, art and Spanish teachers.  It was thrilling to see everyone so excited about the new year and the new school.  His teacher, Miss Millholland, seems really great and she is so estatic about this year and teaching these students.  Caiden was excited about school starting back up and the opportunity to make new friends and be in this new school environment.  I think this school is going to be so good for him...the perfect fit for his personality, learning style and abilities.  We are just so pleased with how things are going already.  He's getting daily Spanish, plus Art and Music twice a week.  The school's musical focus is on string instruments and choral performance.  He gets to learn to play the VIOLIN...in 2nd grade...now that is pretty darn cool!  He's been excited getting off the bus each day and already has made a couple new friends!  If you are interested in seeing more info on his school, you can visit the website here. 

Avery is still making progress, though it is always slower than we'd like.  Nonetheless, we are so grateful for every little bit and still hold great hope and faith that there is much more to come.  We can see our daughter shining through more and more each day.  Being off the phenobarbital has made a big difference in her awareness level...and that is so promising to see.  Though, the down side is that we may be seeing a little more seizure activity as a result.  It still pains me and troubles me that she is continuing to have daily seizures and that some still physically affect her (head jerking, arm and leg stiffening and tremmoring).  She seems to be particularly seizure prone with the slightest illness...even without running any significant temperature.  She and I had colds the week before last, and she was having so many more seizures...I found myself being emotionally transported back to the per-surgery days when she was having so many each day.  I just want so badly for them to be gone...b/c there are always more risks for kiddos having seizures...and that makes me worry about the future more than a care to.  I want to enjoy each day and not worry about the next so much.  What peace that would be!...though, it is entirely unrealistic I know. 

We are scheduled to be back in Baltimore for post-surgery follow-up and neuro check up in mid-October.  I think we have a lot to talk about.  What is next?  Can we get her of more meds?  At what point to do we throw in the towel on getting seizure control?  Can we ever?  Do we need to try another  med?  We have started to see that the Ativan really effects her.  It's effects were previously masked by the phenobarbital...but now that she is off that we see some "new" things with some of the meds.  Not real sure that the Keppra doesn't make her a little moody as well.  Needless, to say...we need to get our thoughts and questions together and have a real in depth discussion when we are out there. 

Home nursing is going so well too right now...actually, has been going well from the beginning.  She has a great team of nurses on her weekly schedule and on her back-up list.  Did I mention that they actually attend school with her too?!  More nurses want to be on her regular weekly case than we even have room for (it's been continuously filled)...so they are settling for being on the back-up list.  It sure is comforting to know that they've all been so impressed by Avery and not turned off in any way by Jon and I that this is their response to meeting her and our family.  This is such a blessing...one I say so many "thanks" to God for each day!   It is such a great comfort...hard to imagine I was once so worried about leaving her in a "strangers" care.  None of them are strangers after a few hours.

We had a great big 3rd birthday bash in July.  All Butterfly -themed as you might have guessed by the invite...complete down to her Butterfly-ed dress and hair clip! It seemed appropriate given all the changes a butterfly goes through b/f coming such and all the ways Avery has changed...not to mention the natural beauty and splendor they posses...again much like our Sweet Avery.  It was so exciting to celebrate that milestone and reflect on all that Avery has endured in those 3 short, yet very long, years!  Thank you to everyone who came to celebrate with us and to all who called-in or mailed-in their birthday wishes for her.  I have to say, she didn't know what to think about all the people singing "Happy Birthday" to her.  She was on auditory alert for that!  I even made the Butterfly cakes and decorated them myself.  Not terrible for an amateur?  Even made Butterfly cupcakes too!

I know that I have said THANK YOU to everyone on Avery's First Step's team, but I can't say it enough!  These ladies gave so much of themselves to our daughter and for that we are forever indebted.  We MISS YOU ALL TERRIBLY already!  We take solace in the fact that you continue to help other kiddos in need and that Avery's place has been taken by another child who'll benefit from your gift's.  May God help them to flourish in their abilities with your help, as well as in their spirit!

SOME OTHER GOINGS ON:

The Hemispherectomy Foundation was recently created by a family (Kristi and Chris Hall) in Texas whose daughter just had a hemispherectomy for Rasmussen's (we actually met them following Avery's last surgery while they were at Hopkins for their initial consult there).  This excites me deeply b/c it has been something that I wanted to create for a long time, but the timing was never right (The DRIVE to do doesn't always equal the TIME to do).  They have put so much great effort and thought into this and I believe that is is going to be a great resource for any family whose child has a diagnosis for which a hemispherectomy is recommended or even considered.  Who better to learn all about such surgery, outcomes, questions, etc. than the many families who've already walked that path...and those who've also just begun the journey?

I have been working hard at getting resources together for inclusion on the HME support network website I created to help other families navigate the world an HME diagnosis brings with it.  This was my answer for trying to help other families when I couldn't quite take the bigger leap to do what the Hall's have now done.  I hope to have many new links, more information and more resources up in the next couple of weeks.  It is great to see interest already and already be adding members to the membership list.  Please, let me know what you think - thoughts, suggestions, errors, concerns - if you take the time to check it out.  Email me at resources@hemimegalencephaly.com.

Jon and I continue to do well too.  We actually welcome the return to school and the semblance of routine it brings.  It has been a really busy and FAST summer.  We just attended my 15 year high school reunion and really enjoyed getting to see and catch up with so many people.  It is amazing the things some have gone on to do.  Next, we are planning to travel to northern Michigan to FINALLY see  Brian, Shaynee and our nieces, Ryan and Reese, and their "new" home.  They've only lived there for 2 years now and we still haven't visited!  I know, we have had a little on our plates the past two years...but it will be nice to finally be able to make the trip.  My nieces are not going to know who I am anymore!  Other than that, we are looking forward to a more low-key (hopefully) Fall season.

Thanks for checking in on us again.  May you all know joy and peace as the Summer draws closer to a close and may God sustain you through any and all struggles in the days to come.

Cheers,
Holly

   

Comments

[Janice Waack]

Thanks for keeping us updated on your precious children. We will continue to keep you all in our prayers and pray that Avery gets some relief from those nasty seizures.
You are always in our thoughts.
Love, Sydney's Grandma

[Jennifer Jones]

Please give Avery our love as she continues to progress. I'm so glad to hear of her increased awareness but am saddened by the news of increased seizure activity. We're always thinking of you guys!

Much love,
Jen