Weekend Review!

I wish it were socially acceptable for adults to eat mashed potatoes like this! :) 

Good morning sweet face!

C has gotten so comfortable at the park lately...she's been sliding down the slides by herself, trying to climb up the slides, running after Jackson...it's been super fun to watch!

"hey, look at me!"

Hi handsome boy!

Watch out, I am coming through!

Goof balls! 

Neuro Visit and news about PT

It is crazy how worked up I used to get before Charlie Claire's visit to the neurologist.  I used to lose sleep over it, have lists of questions for the dr, etc.  and now it is seriously like going in for a "well baby check up!" Those were actually Dr. M's words, I just stole them! :) 

Charlie Claire had a great time at VCU today.  She was being her normal cute self...flirting with the nurses, running around, etc.  It was actually nice to see her like this since for a while just walking into a dr's office would instantly cause her to shut down.  This is the first visit (to any dr) in a long time that she didn't cry when they listened to her heart or tried to take her blood pressure. I have a feeling that after her surgery next week we may take a few steps backwards but I digress! 

Dr. M was super pleased at how well Charlie Claire is doing.  He said she is excelling developmentally and couldn't be more complementary about how great she looked and where she is at currently.  We were given the go ahead to decrease her keppra yet again and then after two weeks stop it completely.  We are really hoping things continue to go well with the taper and then once it's totally out of her system so at that point C will only be on ONE seizure medication! She has been on 2 + since she was 3 months old!!!! It will be such a blessing to have her down to one medication.  

The one thing that is hard for me is to not get ahead of myself and think into the future.  We don't know if there will be any other seizure types that ever pop up as Charlie Claire starts to use other parts of her brain.  She (along with anyone) can have new issues arise while the brain is growing and maturing which is about to age 16.  At the same time nothing may ever pop up...so I am trying to constantly remind myself that I need to take one day at a time and just be super grateful for what we have gotten through and where we are at now.  If I get too far ahead of myself I will just be heading down an unnecessary road.  If something ends up happening we will deal with it when it happens. 

Sweet girl ready to hit the road! 

Exhausted after a good visit with Dr. M. 

Ok...so now on to Physical Therapy.  I am going to keep this part short and sweet since I don't want to cry. This morning was Charlie Claire's LAST PT session.  It is unbelievable how well our sweet baby girl is doing! :) 

happy weekend!

Man, we had a good weekend! I feel like it's been a while since we have been able to say that! 

Jason and I were both at work on Saturday so the grandparents took the littles to the Italian Fest at the oceanfront.  YNot was having their pizza games so Jackson and Charlie Claire got to take in some of the action! 

This boy has yet to meet a sweet he doesn't like...cannoli and gelato? Yes, please! :) 

Aunt Theresa lovin's

I am going to go out on a limb and say that since the next few weeks look completely insane for us that it was nice to have a mellow Sunday. We have A LOT of dr appointments coming up...

Neuro 9.24

Eye dr pre-op 9.26

Eye surgery 10.4

Eye dr post op 10.8

2 year check ups 10.15

We also have a birthday party for J and C, their actual 2nd birthday AND they will be starting school that day! Safe to say this is sort of the calm before the storm! 

We started the day off rooting for the Giants! 

And then we switched to support the Redskins! 

Charlie Claire has discovered the goodness of the Pumpkin Spice Latte from Starbucks :) 

I am so in love with this boy!!!

And this just melts my heart every time I see it!!

Eye Surgery

It's official, Charlie Claire is having another surgery.  I am trying to not be Debbie Downer about the entire situation but to be honest it just stinks.  

C's eye dr is super nice and told us that he truly felt that with all the patching we've been doing plus the exercises we've been doing from Charlie's OT that we probably aren't going to see a significant change.  He said that when she is focusing on one item that her eyes do a really good job of staying in line but when she isn't the right eye drifts.  He feels that since she has no vision on the right side that she isn't getting the visual input to signal her to pull her eye back in.  The dr gave us the option of timing...we could do it soon and get it over with or wait and just continue to patch her.  

We opted for the sooner...October 4th.  

The surgery is a 30 min, outpatient surgery done at the Children's Hospital. The surgery will be on both eyes since it is a muscle imbalance issue.  There is apparently minimal discomfort but her eyes will be quite blood shot for a couple of weeks. There is also a 20% chance that she will need another surgery down the line. 

Ears!!!

We've been talking about piercing Charlie Claire's ears for a while but to be honest I was too chicken to take her! I have been trying to get my one aunt to take her, her God Mother to take her, basically anyone who offered! 

Yesterday I was out shopping with my mom and mother in law for the day so Jason and the littles were left to do their own thing.  When I walked in the door this is what I saw...

Check out those little pierced ears!!!!! Could she be any stinking cuter?! Thanks for taking one for the team babe and getting C's ears done! :) 

Little Medical Update!

We are still in the process of tapering Charlie Claire's keppra...it has been a month since her last dose decrease and we will be dropping it again tomorrow.  We aren't sure yet what the next dose decrease step is but we have an appointment with Dr. M on the 24th so I am sure we will find out more then.  Speaking of the taper...it seems that each time we taper Charlie Claire off a med her sleep schedule gets messed up.  Thankfully she sleeps through the night (knock on wood!) but she wakes up SUPER early and doesn't nap long which sort of messes up the flow of the rest of the day.  Typically it takes her about 2 weeks to adjust which is when we normally do another taper so it's quite a cycle to get her off of meds.  We are glad to be reducing the number of medications she is on but that doesn't mean we have to like the process of doing so! 

We had a pleasant little visit from Charlie Claire's service coordinator (and Educator!) today! We love Stephanie but unfortunately do not get to see her as much as we see the other ladies who come to the house on a regular basis.  Jason and I are in the process of writing a letter on behalf of C's Early Intervention Program (more on that another day) and Stephanie was dropping off a few things for us.  She brought over all of Charlie Claire's IFSP (Individualized Family Service Plan) papers since December 2011.  Since December Charlie Claire has met 23 GOALS!! It's amazing to look back at what we wrote for her goals in December (ex: get in and out of sitting by herself, open her mouth to allow us to brush her teeth, etc) and the progression of those goals as she has met them.  It is nothing short of amazing to us what this little girl has accomplished in 9 months! 

Monday Charlie Claire has a follow up with the eye dr...we have been diligently patching her (and to be honest she has been doing a great job wearing it) and doing her exercises with her from her OT but her right eye does still drift.  A lot when she is tired. I am pretty sure we will be discussing surgery on Monday.  We are armed with a list of questions for the eye dr since the last thing we want is for C to have another surgery...even if this one is a routine, outpatient procedure.  Ultimately, we do not want this eye drifting to have any negative impact on her vision so we will need to weigh the pros/cons.  I'll update more after the appointment on Monday. 

Hope everyone has a wonderful weekend! You didn't think you were getting out of here without some pictures did you?! :) 

Labor Day Weekend and Preschool!

Is it just us or did summer fly by? 

Thankfully for us we have another month before Jackson and Charlie Claire start school.  Say what? Yep, you read that right...we've been given an amazing opportunity to send Jackson and Charlie Claire to preschool when they turn two next month! 

Jason and I had no intention of sending Jackson and Charlie Claire to school so soon but we have realized lately that Charlie Claire is so motivated by what Jackson does that being around other little ones will probably encourage her even more.  Not to mention it will be so good for Jackson to be in that environment as well! We looked into a few different schools and fell in love with one that was recommended to us by a few friends.  While we aren't necessarily "ready" to send J and C to school we couldn't be more excited about this new adventure for them! 

Hope everyone had a wonderful long weekend! 

"Relaxing" at Target!

Tired Monster

Very serious meeting going on over here! 

Special Labor Day treat! 

Slurpee face!