Carpe Diem...

There are a lot of things Miss Charlie Claire Bear (and of course Jackson!) has taught us in the last 20.5 months. 

The reoccurring theme to these lessons is "carpe diem"...ironic, huh?!  No matter how big or how small of a milestone Jackson or Charlie Claire reach we celebrate! When you realize just how precious each and every milestone is you really want to stop and breath it in!

I have to remind myself on a regular basis to slow down and enjoy what Jackson and Charlie Claire are doing right now so I don't miss it...things change so quickly.  In the past, I have been so focused on the next goal that Charlie Claire has to reach that when she would hit one I would immediately move on to the next one rather than rejoicing in what was just accomplished.  With Jackson, I found myself just expecting him to do certain things and when he did them I didn't think twice about it.  Whether your child is a typically developing one or has developmental delays each and every thing these little ones do is a miracle and a blessing! Celebrate and enjoy it!

Charlie Claire's new love is RUNNING wild and free! She likes to try in do this in the street since my parents neighborhood does not have sidewalks.  With the amount of cars that come flying down the street we can't let her do this.  Instead, Jason and I decided to take the littles down to the beach yesterday and let them loose on the boardwalk.  Charlie Claire was in HEAVEN!

It made my heart happy to see our little beach baby happy as a clam roaming on the boardwalk!!! :)



Monster Mash was way more interested in the frozen yogurt then walking on the boardwalk!

And a funny little story to end the day...as I was folding laundry this afternoon Jackson came in to "help" me.  He usually does this by taking the clothes out of the dryer and throwing them on the floor but today after he took the clothes out of the dryer he decided he should climb on in.  He managed to get in there all by himself...



Summer time and the livings easy...

Last summer, I must admit, I was so focused on Charlie Claire's development that I didn't want to leave the house.  Leaving the house meant we weren't working on tummy time, sitting up, reaching for objects, etc.  I am not sure if this was a good mind set or not but nonetheless we were a tad hermit-ish.  I also wasn't super comfortable taking Jackson and Charlie Claire out by myself, especially since Jackson was developmentally leaps and bounds ahead of C that I just didn't feel like fielding questions.  It was not my proudest of times...it was pretty lonely and boring but when I look back and see how far Charlie has come maybe it wasn't such a bad thing!!

Charlie still has "homework" to work on for her PT, OT and Educator that we need to do at home in the house but this summer is so much different then last.  Now that C is mobile she sort of takes care of some of her own therapy.  This has, thankfully, taken a lot of the pressure off of me. She likes to practice walking and running while carrying objects (big and small), she is exploring on her own, she is climbing on things, etc.  Also, this summer Charlie is so much more aware of her surroundings so each new thing she encounters is really a learning experience. Since the developmental gap between her and Jackson is not as big as it was before it's also gotten easier to do activities with the both of them. This has made for some awesome summer fun!

Our sweet little monster is all about helping these days...and that includes helping Nonno work on the pool!

Charlie Cakes is ALL about this pig!

Kisses for Jeter Bug

Tough day at the pool!

Practicing that walking I mentioned earlier!

Sunday Funday at the beach!

Look at me, I fell in the sand!

PASSED out after beach trip!

Funny girl!

Practicing walking and running isn't all fun and games...sister tripped over the air and the concrete broke her fall.

Lounging with Aunt Nicole!

Super Jackson!

Hope everyone is enjoying their weekend! :)



Father's Day Weekend!

We had a fun family day yesterday...celebrating my awesome husband, dad and father in law!

Afternoon trip to the bay!

Kisses for the Flying Pig! That's good luck, right?!!

Hope every one had a wonderful Father's Day!

Can I be honest and tell you that now that Charlie Claire is basically running on all cylinders that her and Jackson are running me ragged?! I seriously am finding it difficult to keep up with anything else besides the two of them lately! I am not complaining, I love it but boy am I tired!

Charlie Claire has discovered the goodness of running this past weekend, homegirl picked up speed real quick, and rough housing with Jackson.  This is quite a typical scene in our house these days....

VCU Update!

Our girl had her first EEG today in 7 months. We knew it was going to be a process, to say the least, to get the leads on her head and we were dreading that.

Thanks for my super cute outfit from South Africa Aunt Jen and Uncle Jason!

Quick snooze on the trip up!

Hanging with Daddy before the EEG

We were lucky enough to get one of our favorite EEG techs today so we felt relieved when we saw her! Gwen is super sweet and super quick! Charlie Claire did cry and we had to lay across her but as soon as she was able to sit in my lap she was good to go!

This was by far C's quickest EEG...20 min! After the EEG we walked over to Dr. M's office to meet with him. Dr. M did have a chance to look over C's EEG which was awesome...he said that it looked GREAT! There were no spikes (the main thing Dr. M was looking for now that C is off klonopin), there was some slowing around the surgical area which is normal since there is no brain tissue there and overall things looked awesome! It was such a relief to hear that! Dr. M said we are going to wait about another month and then start tapering Charlie off keppra. We are all on the same page as far as having C on the least amount of meds possible.

Right now we only see Charlie Claire have a seizure when she wakes up from sleeping...so when she gets up in the morning and then from her nap. We did ask Dr. M if he felt we would ever be able to get these seizures under control.  Since these seizures are not impacting C whatsoever he is comfortable not being super aggressive with medication.  Since Charlie is to young to communicate with us what side effects a medication could be causing her Dr. M would like to wait until C is old enough to do so before trying different ones.  Since day one Dr. M has always explained that the cure can't be worse then the disease. There are a lot of meds we could try for Charlie but if the side effects are worse then the seizures she is having than that doesn't really make sense. Once C is able to give us feedback on how different meds are impacting her then we will have a lot more flexibility with options.

To say that we felt relieved when we left the office is an understatement.  It is so encouraging to us that Dr. M is so pleased with how well Charlie Claire is doing developmentally/socially/etc. We know how hard we work with her and her therapists/educator on a regular basis so it's nice to know it's paying off! :)

We will be heading back to VCU in September for another follow up!

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Some fun photos from the weekend!

Wedding fun Saturday night...love these two girls!

<3



19 months...

When I was pregnant with Jackson and Charlie Claire Jason and I signed up for a package with Jessie that included a maternity session, newborn, 3 month, 6 month, 9 month and one year pictures. Because of Charlie Claire's first surgery  our schedule got a little mucked up and we sort of tweaked the package.  We are so glad that we did and were able to get a 19 month session done! Jackson and Charlie Claire are such little people now and it's UNREAL to look back at how much they have grown since we started with Jessie.

We are so grateful for Jessie...she is the sweetest, most good natured soul you will ever meet and we are blessed to have had her on this journey with our family! So while we are sad that this was our last session in our package it's safe to say that we will be seeing Jessie again...SOON! :)

Here are a couple of the photos from the session

I know we are biased but aren't those the two cutest love bugs you have ever seen?!!! Please check out Jessie's blog to view some more photos from the session and feel free to leave a comment :)

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In other news....

Both littles have hand, foot and mouth virus...UGH. Poor little ones have blisters all over the place and have been quite miserable the last few days. In some ways it's easier that they both have it at the exact same time (ex: they will both be done at the same time) but harder in others (ex: not easy trying to comfort two sick littles simultaneously).

On Monday we will be heading to VCU for a routine EEG and neuro appointment. Charlie Claire hasn't had an EEG since November...that is 7 months...the longest she has ever gone without one. We knew it was coming since Dr. M said he wanted to do one once C was off klonopin and she has been off now for about 3 weeks. While we are glad she is getting one and are interested to see how things look we are NOT looking forward to the process we have to go through to get the information.  We can barely get Charlie Claire to lay down long enough for a diaper change so Monday should be a real treat. I also would be lying if I said I wasn't nervous...while I have faith that things are status quo with C's EEG with our history it's hard to not get nervous.  Thankfully, I have the world's most laid back and rational husband who continuously reminds me that "everything is fine!" We would appreciate any extra prayers, positive thoughts, good EEG vibes, etc. you have to offer! :)



Look how far we've come...

I know what I am about to say sounds super silly but hopefully you will understand...now that Charlie Claire is walking and has pretty much met all of her PT goals we are going to be dropping Wendy down to once a week. 

 Now here me out on why I am feeling bittersweet about this.  Wendy has been with us since day 1...she started with Charlie Claire when she was 3 months old...before she was showing any developmental delays.  When the Early Intervention team came out for C's assessment she didn't quite qualify for services because she was a "typically developing child". We had to BEG the Early Intervention Program to take on Charlie because we knew that with brain surgery on the horizon C would need some type of help. Thankfully, they agreed and sent Wendy into our lives! Wendy has been the driving force behind everything we do for Charlie Claire.  We went from seeing Wendy once a month to once a week to twice a week, she recommended us adding the developmental educator, she recommended us adding occupational therapy, etc. We TRUST Wendy.  Wendy is my lovie! She knows Charlie Claire probably as well as she knows her own daughter so the thought of her "tapering" down C's sessions is hard for me. 

This is a HUGE accomplishment...and that isn't lost on us but as C has been knocking her goals off the list I wasn't thinking that it meant I was one step closer to losing my lovie!

Thankfully, C does still have a few little things to work on so Wendy will still be with us once a week, for now...she had better medicate me when she tells me that we are dropping down to every other week!

Wendy...we LOVE you and appreciate EVERYTHING you have done for our family!!!! :)

Photo Fun...

Monster Mash is very into shoes...trying to wear my running shoes!

And clothes...trying to put on Nonno's bathrobe!

And a hat...on a warm morning! :)

This little guy LOVES the pool and has ZERO fear!

This sweet little girl on the other hand is a tad more cautious!

Speaking of lovies...Charlie Cakes has a new one...Ellie the Elephant has taken a back seat to the frog!

Snoozing while on a run with me!

Partying while on a run with me!

Apparently daddy's walk was boring! :)

LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE!