Thursday, August 29, 2013

Keegan's First Day of Kindergarten

Yet another milestone in the Harrison house.  Today was (technically) Keegan's first day of kindergarten!  He is still homebound and unable to attend school with other children due to his immune suppression.  So, this year he will receive four hours per week of one-on-one instruction at home with his special education teacher from the school district, Ms. Jenni.  We were so excited that Keegan was able to stay with Ms. Jenni, and it was reassuring to see him slip right back into the routine with her, as if summer break never happened.  Consistency is key for Keegan!

This year is slightly different than last year, in that the standard kindergarten curriculum will have to be adapted to fit Keegan's developmental stage.  Last year, he was in pre-K at the Early Childhood School, where the entire school consists of kids with special needs in need of preparation for being mainstreamed into traditional kindergarten.  Keegan is now technically enrolled at the local elementary school.  He was assigned a classroom and teacher, who must "pretend" that Keegan is actually at school.  She is required to create curriculum materials for him, keep an empty desk for him, and even a cubby for his things, even though we all know he will never step foot in the building.  Each Tuesday, Jenni will meet with Keegan's classroom teacher to collect the materials the class completed the week before.  Then, she will adapt the lesson plan to Keegan's level.  It's complicated but reassuring to know that everything is planned out so well for him.

We know this is the best plan for Keegan.  He works very well with Jenni, and we couldn't ask for better attention and dedication for him.  We are extremely grateful that this option exists to help him learn and grow.  But the pain is still there and gets just a bit deeper with every step on this journey.  We have attended Meet the Teacher at the school alone and watched all the other kids from our neighborhood enter their classrooms for the first time.  We discovered that Keegan would have been in class with his oldest friend, Lainey, from across the street and even would have been cubby-mates with her.  It is easy to pretend that Keegan is not that much different from other kids his age when he is alone, but watching all the other kids at school events, it became painfully obvious how the gap has grown over the years.  I couldn't help but wonder what he would have been like at this age had things not gone the way they have.  We are grateful for every day with Keegan, no matter what, but it doesn't always make the grief over how things could have been any easier to swallow.

But today, we reached another milestone with our Bug that we were once told we never would.  It may not be what we thought it would, but he has defied yet another odd on this journey.  Congratulations on your big day, Keegan!  We love you and are so proud of you.  Welcome to kindergarten, buddy!

Wednesday, August 21, 2013

Audrey's First Day of Preschool

Audrey has attended "school" at a Mother's Day Out program at a local church for the last two years, but today, she officially became a preschooler.  She has talked all summer about going to her new "big girl" school at our church.  Even though she had a tough time waking up early enough this morning, she was good to go as soon as we got to school.

Walking in with Daddy

Daddy and his preschooler

Baby Stella even got her own uniform to wear.

 Getting silly.  It's about time to go in!

Mama and her Ladybug

Hanging up her bag and putting her ladybug lunchbox in her cubby

Walking to the classroom with her teacher, Mrs. Kenny,
and her cubby-mate, Madeline.

First circle of the school year
Love those pigtails!

The look says it all...time for business.

As we expected, she had a great time at school.  Audrey is such a social butterfly that she was in her element with her class.  As I picked her up, I asked her how her day was.  She said, and I quote, "it was glorious!"  I have no idea at all where she picked that up, but if it was true, you couldn't wish for a better report!  

I had a hard day today with Audrey's first day of "big girl" school and Meet the Teacher night at Keegan's elementary.  I know many moms have an emotional day when their baby starts preschool, but this was slightly different for me.  Sending my baby off to the school she will likely be at for the next eleven or so years should be bittersweet, and it certainly is.  But Audrey is ready and thrives in the school setting.  I couldn't want anything more for her.  I am having a hard time getting over my disappointment over not being able to do this with Keegan.  Today was Audrey's day, though, and I will keep the focus on her.  

Audrey, we are so proud of you and how well you did today on your first day of preschool.  We can't wait to watch you grow, learn, and shine.  We love you, Ladybug.  Good luck this year!  You are our POP STAR!  

Monday, August 19, 2013

End of summer medical update

It seems I have reached another milestone in parenting.  The sheer frenzy that is for most parents a mix of joy, anxiety, exhaustion, and sentimentality that marks the end-of-summer/back-to-school period.  For the first time, I am beyond ready to get Audrey, and to an extent Keegan also, back into the routine of school in order to have more structure, more time to work, and simply something for her to do.  I finally understand the kids-dread-it-but-mom-can't-wait mentality of American lore!  (Although I will wave my nerd flag high and admit here that I was definitely one of those kids who adored the entire back to school process - new supplies, textbooks, backpacks, uniforms.  So fun!)  Keegan also needs his structure and routine more than other kids, so adding back in his twice weekly sessions with his teacher will be very helpful.  There is so much I feel that I did not accomplish over the summer that I am extremely anxious to do better at tackling once the routine of school has set in.

This is Audrey's first year of preschool (starting this Wednesday), and Keegan will technically be in kindergarten (starting the following week).  Big milestones that bring a wave of emotion for any parent watching their child move on to the next biggest and brightest thing.  Luckily, I am granted those typical parental milestones with Audrey.  The range of emotion when it comes to Keegan is an entirely different beast and one I haven't fully allowed myself to explore yet.  Maybe once Audrey is settled into school, I will have time to come to grips with it and write more here.  In the meantime, there is so much that I need to catch up on this little blog.  Most important, however, is a medical update on Keegan.  Since that's the reason for this blog and all...oops.  Then in the coming days, I'll try to get to the more fun times and/or deep thoughts.  I think for my own sanity (and yours) I must once again resort to bullet points.  So here goes.

  • Keegan has been doing well with his new port that was implanted at the beginning of the summer.  Swimming is by far one of his favorite activities.  Even though he was not able to swim for over a year and is only allowed one day per week to do so, he is a true fish in the water.  Every week he goes farther, deeper, or longer.  There is no stopping him!  I curse that port at least twice a week, but watching him find pure joy in the water is worth it.
  • We have been unable to wean his steroids any more over the summer.  Right after receiving the news of the gliosis in Keegan's brain and the need to aggressively wean his steroid load, he went inpatient for most of June with a systemic yeast infection.  To keep him from having an MAS flare, we had to increase his steroids during treatment.  We got back to his previous baseline, but then his ANC and white count plummeted for a few weeks.  Since then, rheumatology has been cautious in going back to weaning the steroids.  We don't want to rock the boat and need to be extremely careful.  Right now, the plan is to reduce by another milligram at the end of the month if his blood counts stay stable.  We will reduce by one milligram every 2 to 3 months from here on out, as we have reached a point where his body is so dependent on the steroids that any faster could cause a flare.  We have not increased his anakinra again, but we are anticipating having to do so soon.
  • We do not have an update on the genetic mapping Scottish Rite is working on.  Dr. Punaro was trying to get in touch with the geneticist for an update for us soon.
  • We continue to chase our tails with Keegan's electrolyte levels.  He has completely maxed out his current dose, but we don't want to have to add days on to his TPN if we don't have to do so.  He hasn't gained any weight or height in the last year.  That is another balance we are trying to reach between the steroids and the TPN.  The more steroids that come off, we will have to titrate up on his TPN to compensate for the increasing intestinal problems.  We continue to evaluate this on a weekly basis with his GI doctor.
  • Lastly, Keegan had his 18-month follow-up evaluation with neuropsych.  This was the report we have been anxiously awaiting since the disappointing news at Keegan's last neurology appointment.  The news was fairly positive overall.  Keegan is in general developmentally around that of a 33 month old child at this point, just about 3 years old and slightly behind Audrey.  That is roughly 12-14 months of improvement over the last 20 months since his last evaluation, which is obviously very encouraging.  Ideally, 20 months of improvement or more would be ideal, but in the grand scheme of things, we are very blessed to have had that much progress.  The hardest piece of news to digest is that based on the damage Keegan has suffered, he could reach his full potential within the next few years, at which time he will switch from intellectual learning to functional and adaptive skills.  We were given some warning signs to look out for, such as losing skills or a plateau in mastering new skills, but the best way to track this will be through repeating the full evaluation every 18 months.  Keegan is also at an increased risk of early onset dementia, which could come as soon as the next few years or into his teenage years. 
I think it's best to let the above information speak for itself.  There is nothing in the above paragraph that comes as a surprise to us.  I won't lie though.  It was quite a blow to actually and finally hear it said out loud by the team.  It is information we are trying our best to process and prepare for as best as we can.  Our biggest comfort comes from how Keegan has continually beaten every odd.  This one is not likely one he can beat, but no one can say definitively when these things will happen.  And if and when they do, I'm sure we won't be ready, but we will try to handle it as best as we can.  We promise to continue to give him every opportunity to shine that we can and to be grateful for every day we are blessed to have him here.  Thank you for allowing me the time to process some of this information before sharing it.  We appreciate every prayer lifted up on Keegan's behalf.  You provide us with strength and encouragement on a daily basis as we travel this road, and we couldn't be more grateful.  

Monday, August 12, 2013

That's one STRONG Bug

I know I am extremely behind in updating about this kiddo.  Oh, he just makes my head swim sometimes.  Or all the time. He is stable and home for now, which is the most important thing.  We are hoping that Keegan's labs will stabilize and/or improve enough to start weaning his steroids again next month.  I will post a full update later this week.  There's been some encouraging news and some disappointing news but nothing we can't handle.  I'm getting it all together.  I promise.  Thanks for continuing to pray for strength for Keegan and our family.  Looks like it's working!

Monday, August 5, 2013

Beautiful baby ballerina

My life came somewhat full circle today.  My baby girl started ballet.  Audrey is attending a week-long workshop at Texas Ballet Theater.  My parents spent hundreds of hours over fifteen years sitting outside a ballet studio, and now, it's my turn.  I can't fully describe how my heart swelled watching her step foot into that studio and start dancing.  I hope this is the beginning of a passion for dance for her, but if not, I will understand.  Even watching her for one week will give me a lifetime of memories.  We love you, our sweet ballerina.  

Friday, August 2, 2013

Shirts are in!!

Yes, I have a zillion things I need to write and update about.  It has been two weeks of literally chasing our tails with Keegan's labs, among a host of other issues he is throwing our way.  I feel like a chicken with my head cut off every single day.  Not one day in the last two weeks has gone the way I intended or hoped.  Another story (albeit not a surprising one) for another day.

This is what's important today:
That's a really awful picture to show you that 

If you contacted me earlier via email, blog comment, Facebook, or word of mouth with your desired sizes, then I had those sizes printed for you.  I did order a few extra of each size in cotton shirts, but I need time to get everyone who pre-ordered theirs first.  I did NOT order any extra tech shirts because they are more expensive.  I can absolutely print more if we sell all of these!  That would be SO amazing!  

   If you ordered a shirt, here's what I need you to do:
  • Please EMAIL me at with your name, sizes/type of shirt, and if we are mailing it to you, your ADDRESS.  If you are local and want to pick it up, let me know that.  Please do not put this information in a blog comment or Facebook post.  
  • I will respond to confirm your sizes and with our address where a check can be sent.
  • If you would like to pick your shirt up, you can come to our house in Plano or Gray's office in Dallas.  We will confirm via email.
  • COTTON SHIRTS: $13 each
  • TECH SHIRTS: $22 each
  • SHIPPING: $5 flat rate
Just a reminder that if you expressed interest earlier, I did order your shirt.  We are not making a profit off of these.  This is simply a way to spread the word about organ donation, and we paid for the entire order out of our own pockets for now.  I am so excited to get these shirts out and see some pictures of y'all wearing them!  We are trying to find our next race, and now that we have team shirts, I'm hopeful more of Keegan's fans will come join us.  Please let me know if you have any questions at all.  Thank you again for your love and support.  We are truly overwhelmed.