paige patrol

Summer, Babies, School, and Updates

I’m back after summer!  It’s been a busy one and we’re starting to get into the new Fall routine.  I’m sort of, kind of, really excited about Fall!  I’ll do a little individual updates on the family and what we’ve been up to for the past few months.

Miss Paige has been hard at work all summer with therapies and Conductive Ed camp.  The Paige Patrol t-shirt fundraiser we had for her was put to great use in this camp and we are thrilled with her progress.  Initially, we signed up for a four week camp with Paige going Thursdays and Fridays from 9am-noon but ended up attending all eight weeks! I was there with her and it was a block of therapy that basically focused on muscle memory and incorporated both gross and fine motor skills.  I describe it as conjoined Physical and Occupational Therapy.  She was in a preschool classroom environment with several peers so she had interactions with other children and adults, which I loved!

The day started with a good morning routine and introductions.  Paige enjoyed the songs and was incredibly receptive to the instructions.  Then, we made our way to the planks (slotted wooden benches) and did back and tummy workouts.  We stretched and focused on each muscle group with a different exercise.  All of the workouts seemed to be really simple but they were actually very detailed and required Paige to use her hands and feet simultaneously, head control, muscle strengthening, visual focus, cause and effect, and body movement.  The exercises were the same every single day and incorporated really fun songs, dances, and toy props that were interesting and stimulating.  Paige did a fantastic job and gained leaps and bounds with her fine motor skills and hand exploration (which has been a huge obstacle).  I’m 100% positive her favorite part was the body massage with a spiky ball at the end and I can’t blame her one bit.  She worked hard!

Next, was snack time, or as the Hungarian conductors called it, morning tea.  Each child had their own spot at the table and they sat at a bench with “their person” behind them to help them eat and drink.  We worked on using utensils and the adults used this opportunity to talk and compare notes, so to speak.  It was great to have Paige be part of a group and she really loved it.  I really loved it!

The last hour was dedicated to sitting and standing work using wooden ladders, benches, yoga balls, and props.  The conductors did a great job of entertaining the kids with songs and games and every activity has a cause and effect goal that went along with the muscle building.  Paige wore her AFOs (foot/leg braces) and her Benik vest (for back support) which helped alleviate some of the work from those areas so she could use her energy to work on the activities.

When it was time to leave, we said our goodbyes and each child had to work to get out of the door.  Paige was usually assigned to roll or army  crawl out the door.  Towards the end, we tried taking steps using the ladder and that was incredibly moving to see!

Overall, we had such a wonderful experience that we decided to enroll Paige in the Conductive Ed preschool one day a week in conjunction with CE coming to the house via Early Intervention.  Paige gets to be in a preschool environment and still continue her visual, physical, and occupational therapies at home!

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I’m super happy to report that Paige is also MOBILE!  She is rolling around as her mode of transportation and exploration.  She likes to scour the floor and usually gravitates to the dog’s bed.  We weren’t ever sure if she’d ever roll over and it’s so amazing to see and we never take her progress for granted!

Mr. Will also had a busy summer!  He attended his own summer camp through his preschool and he had an absolute blast with it.  He enjoyed exploring outside, collecting rocks, swimming, dressing and picking out his own clothes, staying up late, shopping with his mom and playing sports with his dad.  He has a really great group of friends he’s known since they were all babies, and their mom’s happen to be my best friends, so we get together frequently and had a really great summer of playdates, birthday parties, and exploring Pittsburgh.

Speaking of birthdays, Will turned FOUR on August 30th and had about 3 weeks worth of birthday celebrations.  His first was with his buds at Chuck E. Cheese’s, second was bike shopping and dinner with the Barbour side, and the third was spending a fun day at Del Grosso’s amusement park with the Shearer clan!

Our little man just started 3-4 year old Pre-K and will be attending three days a week with his friends and teachers from last year!  We’re super proud of him and we’re excited to see what he learns this year.

In other news, we found out that Will and Paige are going to be a big bro and a big sis to a baby BROTHER!  Yep, it’s definitely a boy and he’ll make his entrance into this crazy crew in mid January.  The pregnancy is going well so far and, due to Paige’s history, we’ve been monitoring the head shape and anatomy a little extra carefully.  Per our genetic report, another Lissencephaly diagnosis has less than 1% chance of happening but it’s still very nerve-wracking and I would be lying if I said I didn’t get anxious about it.  The twelve week ultrasound and the anatomy scan showed everything looked great, so far.  We are planning to do a follow-up scan at 30 weeks and a possible fetal MRI to make sure.  Our MFM doctors are pretty confident that if the 30 week head scan looks good we can forego the MRI.  I don’t know how I feel about THAT but we’re taking it one day at a time and I’m going to think positively.

**I really waffled on if I should add those extra details or not but I decided to include them because some Liss parents have asked me about my experience to take the “next step”.  Deciding to have another child after a diagnosis isn’t an easy decision and I know that I asked many parents about their experience before we decided.  I always want to be honest, so if it helps the curious, I’m all for it!

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We’re excited!!!

And some more pictures just because…

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More updates to come!

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Paige Patrol Thanks! And other things!

by Andrew Barbour

We have a few updates to discuss since the last time we posted on here, but first and foremost, Stephanie and I wanted to thank everyone, from the bottom of our hearts, who helped us out with our Paige Patrol fundraiser. I am truly humbled, and honestly shocked, at the number of t-shirt purchases and donations that we received. Your outpouring of support means the world to Stephanie and I. There aren’t any words I can use to express our gratitude to everyone, but please know how much your generosity means to my family.

It’s funny, because to be honest, I was kind of a stick in the mud about the whole thing. I remember very clearly saying to Steph “there’s no way in hell 100 people are going to buy these stupid t-shirts” (the way this thing works is, you have to achieve a minimum number of purchases before you receive your donations). Well, turns out I was 100% wrong, as the goal was exceeded within 24 hours of Steph starting the whole thing up. I am still awe-stricken by the amount of support we’ve received throughout our journey, and specifically with regards to this fundraiser.

As I’m sure you can imagine, having a special needs child is not cheap. I have a good job, pretty good health insurance and all the support you could ask for from family and friends, but there are certain things that wouldn’t have been possible without the support from you folks. Steph has done a lot of research on “alternative” therapies and special needs programs, pre-schools, camps, etc., and they are all incredibly expensive. Steph found one school in particular that’s very close to our house, and actually ended up meeting with some people who had sent their special needs children there. We heard nothing but rave reviews, and stories about children that went through this school and ended up able to do things their doctors never thought possible. I’m not going to give you a specific dollar figure, but let’s just say that it wouldn’t have been possible to send her to this school without the proceeds from the Paige Patrol fundraiser.

Because of the generous donations from you Paige Patrol folks, we were able to enroll her in this special needs “camp” at the school right by our house. After a lot of research and asking around, we decided this program would be a good addition to her normal regiment of weekly therapies. I’ll leave the specifics of what exactly they do to Steph when she has time to post about it, but it essentially revolves around muscle memory since Paige’s brain can’t tell her how to do things we wouldn’t normally even think about, like sitting up or rolling over. Despite her limitations, Steph and I swore from day 1 we would do everything in our power to get her little brain and body functioning at their maximum capacity. And we think the work they do with her at this school is going to help her to continue to thrive and excel beyond everyone’s wildest imagination.

On Sunday, June 7th, Paige celebrated her 2nd birthday. This wouldn’t be anything more than balloons and birthday cake for a “normal” 2 year old, but for Paige, every birthday is a milestone. Being that a lot of liss kids don’t even make it to 2 years old, we are honestly lucky that she is doing as well as she is, and thriving at that. We had a party with our family and friends on our deck that weekend, and it was a perfect day to celebrate her. As a result of everything we’ve been through as a family, we don’t take anything for granted, and have learned to appreciate every chance we have to make a memory with her. Her party that day was certainly something we will always cherish in our hearts.

Our summer is going to be crazy, in a good/busy kind of way. We have something on the calendar almost every day of the month through July, from Will’s soccer to Paige’s special needs camp and everything in between. It’s good, because I think as a family, we’re starting to develop a sense of “normal” after so many unknowns over the last year. Steph and I are realistic about what the future holds for Paige and our family, but that doesn’t stop us from appreciating all of the good things we’re experiencing now.

And thanks, one final time, to those of you who contributed to the Paige Patrol fundraiser. We will always be thankful for your generosity and all the good it is doing for Paige.

Pictures from the park, our home, a Pittsburgh Pirate game, Paige’s 2nd Birthday, and Conductive Ed!

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EEG Update and Some Thanks

On April 20th, Paige had another 24 hour Video EEG.  I’ve been documenting her recent seizure activity on the blog and this particular EEG was to hopefully “catch” a seizure in action to determine an appropriate medicinal course to keep them at bay.

**Quick version** If you haven’t been keeping up, or are just tuning in, we’re pretty sure Paige is having tonic seizures induced by startles and being woken up.

As I predicted, our girl didn’t have one “episode” during our whole hospital stay!  Believe me, we tried to induce one.  A nurse did the light test where they flash blinking lights in her face, I woke abruptly while she was napping, and I tried to scare her a bit.  (Her neurologist got a pretty good laugh watching me try to induce a seizure when they looked over the footage…)  Nothing worked.  Not. One. Thing!  So, even though we didn’t really get what we were looking for, I ultimately took it as a good thing that she wasn’t having them and figured I’d get a call from the neurologist saying, “No change!”.

Wrong.

Well, maybe.

Paige’s neurologist called me this morning and told me that while they did not see any seizure activity her brain waves looked “scary”.  I’ve explained this before, but Paige’s brain activity will never look normal because her brain structure is not normal.  They can get a baseline for “Paige’s Normal” and still detect dangerous or problematic activity going on.

So, what does this mean?  We don’t really know.  Paige is acting as happy as ever and even had a burst of development!  She has been rolling over unassisted, appropriately says “yeah” (in the cutest voice, might I add), shakes her head no (mostly when she doesn’t like a food or get a diaper change), and has been reaching and playing more and more.  All the while, her brain is looking “scary” and we don’t know why.

What I do know is that she has been having some sort of seizure activity.  In what capacity?  We’re not sure but we’ve had to give her rescue med, Klonopin, a number of times and, while it’s worked, the fact hat we needed to use it means… something.  We just don’t know what.  We also know that seizure activity tends to change around age two and she’ll be that age in June.  We know that we’ll have to deal with seizures in some way, shape, or form for the rest of her life.  A leading Lissencephaly doctor at Boston Children’s told us that she has a 100% chance of having a seizure disorder, so there’s that.

Our options:

1.  Another round of ACTH injections.  Paige has had a successful round of ACTH during her bout with Infantile Spasms when she was 6 months old.  This is a heavy duty steroid that I had to inject in her thighs twice a day for a month-long course.  She gained weight, was completely miserable, and didn’t smile for weeks.  However, after she weaned, we had ourselves a happy baby with a “near normal” EEG.  It worked and it worked for a long time (yes, a year is a long time in the Liss world).

2.  Another oral steroid.  Month-long course.  Probably the same as above aside from the needle pricks and pain.

Let me add, Paige was a CHAMPION during her ACTH treatment!

3.  Try another epilepsy drug on top of the one she takes twice a day to see if that helps.  Most kids that I know with Liss are on more than one.  Sometimes a handful or more.

4.  Wait and see.  Since her behavior and development is great, this sounds like a no brainer but there is a chance that the “scary” brain waves can mean trouble’s a-brewin’ and she can have a really BAD seizure and complications that follow.

I don’t even want to think about the complications that can follow.

I’m currently waiting for another neurologist in Pittsburgh to give their opinion as well as the previous doctor’s I mentioned in Boston.  From there, Andrew and I will make the most educated decision for Paige and hope that it works.  We’ve always told ourselves that we’re going for quality of life over quantity but it doesn’t make these decisions suck any less.  We shall see.

Andrew and I are doing okay after the information we were given today.  We’re happy that she’s so happy and there’s still a lot of facts and options that we need to acquire for her doctors.  All we can do is consider this a plot twist in our lives and do what is best for our girl.  We’ll definitely keep you updated!

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On another note, we want to give a HUGE thanks from the bottom of our hearts to those who have supported our t-shirt fundraiser.  We met and exceeded our goal in less than 24 hours..  24 HOURS!!  

The amount of support, well wishes, likes, shares, and donations brought me to tears and we’re so thankful!  So, thank YOU!  We can’t wait to rock our PAIGE PATROL t-shirts!