Friday!

There has been so many things going on in our house that I don't feel like any of us have a chance to sit still!

First up..Monster Mash went from dabbling in walking to full on walking in a matter of days.  Earlier in the week he crawled and walked on his knees most of the time but now he mainly walks and will occassionally (once he falls) continue on his knees. He has also gotten super, duper vocal the past couple of weeks. Most of what he says is not comprehesible but he is totally trying to have a conversation with whoever will listen...usually it's Charlie Cakes! He is just at a super fun age....he is interested in everything, finds a lot of things funny and is just so stinking cute!!

Let me tell you why Miss Nina is awesome and we love her! I had gotten this idea from a friend of mine who made an ABC book for her daughter that had all the things in her daughters day to day life...people, objects, animals, etc.  I really wanted to do it for Jackson and Charlie Claire and while I  hate to admit this...I just don't always have enough time to do all the things I want to do.  I started the book and it was super time consuming but I was sticking with it because I don't like to give up. Then Nina came last week and suggested we make a book for C (and of course Jax!), I mentioned that I had started to make one but had not had time to finish it up.  Nina told me to email her the pictures and she would make it for us. We sent her pictures of me, Jason, J & C, all the grandparents, aunts, Uncle Jason, certain toys, the dogs, etc. and look what showed up with Miss Nina this morning...

Nina, we love you! You ROCK THE HOUSE!!! Thank you so much for being you and being awesome!!!

We have also been working hard on Cakes feeding herself...she is totally getting the concept down and is super proud of herself when she does it. We have been experimenting with different stick shaped foods and other things that she is able to hold...so far ritz crackers, graham crackers and cheerios are the winners!

This week C has officially mastered the art of sitting up from her stomach AND her back! Here is a quick video of her getting up from her belly...she can do it without the pillow but some of her therapy homework is done using the pillow!

There is not a day that goes by that we are not grateful for how well Charlie Claire is doing despite the fact that she is still having seizures. She is totally going to show these seizures who is boss! :)

Monster Mash

Here is a quick video of Jackson walking!

Also, this is the LAST week to purchase lip glosses for the Charlie Claire Kisses Fundraiser! If you are interested in ordering please contact Sondra @ charlieclairekisses@gmail.com

Weekend and Wendy

We spent a lot of time in the house this weekend because the weather was terrible. Thankfully we had enough going on that Jackson and Charlie Claire didn't really seem to mind! I think it is safe to say Jackson is a walker now and spent much of the weekend working on that, I still need to get a video! He is still way quicker crawling or walking on his knees but while he hasn't picked up speed he has gotten distance down pretty pat!

Charlie Cakes says "Go GIANTS!," Nonno had 2 helpers..Jeter and Jackson, C & J love playing together, Monster thought he was super funny wearing Grandma's glasses!

I have been trying to put into words how much Wendy means to our family and nothing seems to be doing it justice. When Wendy started coming for Charlie Claire's PT sessions we had no idea what an important part of our family she would become. Wendy has been through every up and every down with us and she is one of Charlie Claire's biggest cheerleaders. Wendy pushes C harder then anyone else because she expects big things from Charlie and she knows what Charlie is capable of!  We are so grateful and beyond blessed that Wendy is not only C's PT but part of our family!

That being said...Wendy isn't playing games! Charlie Claire is stubborn and she only wants to do what she wants to do. I can respect that. For the most part Wendy challenges the heck out of Charlie Cakes, which pisses her off and she lets us know. However, once C thinks that it was her idea to do something and does exactly what Wendy wanted her to do in the first place she is all smiles and looks super happy and pleased with herself.

Here are some pictures from C's session today. We have been putting her on her stomach more and working on her weight baring on her arms.

One of the things C has pretty much mastered that I haven't gotten any pictures of is sitting herself up when she is on her tummy!! Just in case you have forgotten...C is freaking AWESOME! :)

A few things...

When Charlie Claire first started Lamictal in July I had a gut feeling that it wasn't going to work.  We knew that if the Lamictal didn't work that C would have another surgery. What we didn't realize is that after the surgery C could still be having seizures and the Lamitcal could still not work and now here we are on to a new medication...Zonegran  This is the Charlie Claire's 11th seizure medication.

Since we have not seen any significant difference since lowering Charlie Claire's dose of Lamictal the neuro does not think it is doing anything to help her at this point. So, we are holding steady on the Lamictal dose, adding the Zonegran and calling them in two weeks. If the Zonegran appears to be helping we will drop the Lamictal. So, C is back up to 4 medications at the moment.

I am having a little bit of anxiety about this medication change as this is the first time we are introducing a new medication now that Charlie Claire is on a legitimate schedule.  All anti-seizure meds cause drowsiness and it can be particularly bad the first 4-6 days after starting it until the body adjusts. As selfish as it sounds, it has taken us 15 months to get Jackson and Charlie Claire to nap at the same time and now we may be back at square one. Hopefully C takes to the new medication well and it stops her seizures :)

Charlie Claire also had an eye dr appointment today. I was nervous about the appointment because a) she hasn't been wearing her glasses and b) she hasn't been wearing her eye patch. I thought for sure I was going to get lectured. Thankfully the Dr. was super nice and understanding. He wants to recheck C's eyes to see if she needs new glasses.  It is possible that since July the prescription has changed and if that is the case they wouldn't be helping her and that could be why she doesn't like wearing them.  AS far as the patch, since her right eye only drifts occasionally there is no immediate cause for concern but we don't want it to get worse. So instead of C needing to wear her patch 2 hours a day he said he could shoot for 30min - an hour. If anyone has any pointers here please feel free to share...! We will be going back in March for a full eye exam and this time she is going to have company...Jackson is having an eye exam also!

Lastly, a couple days ago we posted about Mackenzie and her liver transplant. Tomorrow is Mackenzie's 3 year transplanniversary. Please keep Mackenzie and her family in your thoughts and prayers as they celebrate sweet M's life and where they were 3 years ago. Also, please keep the donor's family in your thoughts and prayers...it is because of them losing their 3 year old that M was able to get a healthy, new liver.

One Year...

January 19, 2011 was the day Charlie Claire was officially diagnosed with Infantile Spasms.  Although we knew it in our hearts it was still a punch in the stomach to hear the Dr. at Hopkins say it to us with zero compassion.

Infantile Spasms are a rare and catastrophic form of epilepsy that severely inhibit development. We are super thankful that we ended up at VCU and that the Dr's there were able to stop Charlie Claire from having them. Granted, it came with a cost - her losing brain tissue - but had we not surgically intervened Charlie Claire would not be the growing and developing little girl that she is right now! :)  

 

Wednesday Wrap Up

The weekend in pictures...

If you look close enough you will notice the syringe hanging out of his mouth in the first picture. Jackson has an unhealthy obsession with C's medication syringes. We fought it for a while but since we let Charlie Claire play with them so she wouldn't always associate it with medicine it was hard to not let Jackson...maybe he will be a doctor! :)

C had PT on Monday and let me tell you what...Wendy kicked Charlie Bear's butt! C has been doing so many new things lately and it's awesome that we are able to challenge her so much! It's so fun and exciting to see how far this little girl has come!

Yesterday we took advantage of the nice weather and hit up the park. Jackson and Charlie Claire had such a blast - the two of them couldn't get enough of the swings!

This morning Miss April came for OT. C had a great session with April, I am so glad we have started working with her! We have been working on self feeding with Charlie Claire. We have been trying any and all types of "stick shape" foods to encourage her to pick up and put in her mouth. Jackson is loving C's OT homework because a lot of it involves food! Neither J or C were big fans of the peppers....

We are also working on some other sensory things with Charlie and have been trying to desensitize her feet using a brush.  It seems to be helping so far which is encouraging since that will spill over into her PT things with standing, balance and walking!

Mackenzie Lemn

Life has a funny way of bringing certain people into your life. Sarah and I lived next door to each other in college. She was sorority sisters with my roommates so we did lots of fun college things together however, we didn't really remain in contact after I graduated. Thankfully for facebook we reconnected and one night I saw a post about her daughter Mackenzie being in the hospital. I creeped on her profile and came across her blog. I had no idea that Mackenzie had a life saving liver transplant when she was 14 months old.  At the time, Charlie had just been discharged from the PICU at CHKD and learned that Charlie Claire was going to need brain surgery so as soon as I saw that Mackenzie was back in the hospital my heart went out to Sarah and her husband Mat. Unless you have had your baby in the hospital it's hard to understand the feelings and emotions that come along with it. I wrote Sarah on facebook and we set up a little date to catch up. 

Sarah came back into my life at such a crucial time...she has been such a blessing to me for so many reasons.  While the circumstances for us rekindling our friendship aren't typical, I am super glad they brought us back together!

Sarah and her family will be celebrating Mackenzie's 3 year transplantiversary on January 21st!! If you are interested in Mackenzie's story check out their blog.  You can also check out these AMAZING photos of Sarah and her family and read a little bit about Mackenzie here.

5 weeks post op; 15 month check ups

I know we talk about PT, OT and C's educator frequently but I am not sure if we ever really discuss how much we work with C on things...I am not sure I've had this much homework since college! While a lot of the PT/OT/Education things overlap you can't always do them at the same time so most of our day is spent doing some type of therapy.  Some of it is fun and some of it is not so fun but I know in my heart that all of our hard work will pay off!

Speaking of paying off...look who is moving right along in the standing department!!! No more knee stabilizers!!!!! This girl kicks some serious booty!!!!! :)

Jackson and Charlie Claire are big 15 month old toddlers now! We celebrated by going to the pediatrician and by C getting sick and projectile vomiting every where!! It was a stellar day!

Dr. Cotton is AWESOME! She is always so excited to see us and she is always pleased with how well Charlie Claire is progressing.  She never rushes us, always answers all of our questions, etc. She is just the best!

Jackson is currently 31 1/4in and 25lbs 4oz and CBear is 30 1/4in and 21lbs.  C has only gained 3lbs since March and her steroid days but Dr. Cotton isn't concerned since she eats just fine and she is growing. We just think the steroids plumped her up super fast so now she has just slowed down. Dr. Cotton thought both J and C looked awesome and that they both are doing great!

Jackson has recently discovered my shelf with all the bottle pieces and C's syringes.  It's so hard to stop him when he was having so much fun!

It's been a week since we increased Charlie Claire's lamitical. The seizure # hasn't seemed to increase or decrease but the seizures themselves seem more pronounced. We talked to the neuros office today and we are going to decrease the lamicital. If things improve on the decreased dose then we will know that the lamicital is contributing. If nothing changes on the decreased dose then it probably means the lamitical isn't doing anything to help at this point. We check back with them in a week unless things get really bad before then.

The babies and I started our 1/2 marathon training today - they are awesome running companions if you were wondering!!! We have a long way to go but we are on our way!

My little running friends are BFFs and like to hold hands!!!!! L.O.V.E.

Flying Pirate 1/2 Marathon

I recently told Jason that I would like to get back into running and I thought I needed to register for a race in order to motivate myself. Oddly enough, a few days ago my friend Emilie called and told me that she and a group of her friends registered to run the Flying Pirate ½ Marathon on behalf of Team Charlie Claire! Not only is it AWESOME that Emilie and her friends (many of whom have never even met Charlie Claire) want to run in her honor, but it became an opportunity for me to get back into running, as I have now registered for this race as well! It's possible I may be putting the cart before the horse here, but hopefully I can get my butt in gear and train for this race. (and ps, as I set foot on that 13.1 mile course, there will be no better inspiration for me than my daughter, who has proved time and time again how much of a fighter she is, and how strong she continues to be.)
   
Emilie's (and her friends) goal is to get the word out about Charlie Claire's story, bring awareness to Epilepsy and hopefully raise money for the Charlie Claire Fund as well.

Emilie (and friends!) you ROCK THE HOUSE!

Here's how you can get involved:
  
If you are interested in running the race, Register here.
There is no group registration so just register as an individual and then email me(kcnorth13@gmail.com) so we can keep track of those running for Team CC.
  
We are currently looking into special race day runner/supporter Team CC t-shirts which will be available for purchase. (All proceeds go to the CC Fund)  If you are into graphic arts and have a creative idea on the design for these t-shirts, please feel free to email (kcnorth13@gmail.com) a jpeg of your idea to me directly.

(If you are unable to run the race but are interested in donating to the CC Fund, you can do so by using the pay pal button on the blog or by visiting any Wells Fargo location.)

Facebook and Fundraisers!

Team Charlie Claire is facebook official...find us and 'like' us!

Fundraisers:
1 - Charlie Claire Kisses is still going strong so if you love lip glosses or know of someone who loves glossy lips please check it out! Email Sondra @ charlieclairekisses@gmail.com

2- Flying Pirate 1/2 Marathon...details in the works, stay tuned!

Cheerio Heaven

A lot of things we work on with Charlie are not Jackson approved. C isn't putting a lot of things in her mouth right now whereas Jackson is so some of the small toys/items C's eductor/therapists bring aren't always safe for Jax. Usually we just play with those things when Jackson is occupied with someone or something else but Charlie's OT, April, gave us some homework to do but made it Jackson safe. She wanted us to make a sensory box for Charlie - normally she would have us fill the box with dried beans but since Jax would try to eat those she suggested Cheerios or Rice Krispies. Basically the idea is to have Charlie play in the sensory box and then start hiding toys in there for her to find.

When we placed the box down on the floor Jackson's eye lit up like he had just been given the best gift of his life! Monster could not get over to the box fast enough and was seriously in Cheerio Heaven. He didn't know whether to eat them, fling them all over the place, dump the box over and spill the Cheerios everywhere, etc. Apparently for Christmas we should have just given him this sensory box! :)

Now April did suggest that we lay a sheet down so when J and C are done playing we could just take it outside and shake it out. For some reason I just grabbed a towel and thought that would suffice...safe to say that was a big fail on my part!

Friday!

TGIF!! A little Friday Jackson update to start with today!

Jackson is trying SUPER hard to walk.  He has been taking about 5-6 steps at a time and looks so stinking proud of himself when he does it. The boy is ready to go! Will try and get a video to post! Aside from walking Jax is really fun these days..well the days he naps! :) He LOVES Jeter and Ripken - he likes to give them their tennis balls, he likes to share his food with them, crawl on them, have them kiss his face...it really is super cute to hear him get so excited and laugh just playing with the dogs! Jackson is fearless and while we love that about him it can also be a tad nerve wracking...there needs to be eyes on him at all times!! Last week Jax was under the weather and here is a rare photo of him actually not on the go!

Charlie Claire's Early Intervention team is freaking FANTASTIC! Thankfully, Charlie Claire is finally sleeping through the night but this has sort of caused a problem with her therapy sessions.  When C wasn't sleeping through the night she typically woke up at 7am but now that she sleeps solid she is waking about 5:30/6 and is ready to go for a nap around 8:30.  Miss Wendy and Miss April come over at 8:30 and Miss Nina at 8 so the 8:30 nap time cuts right into that. All of these ladies have FULL schedules but because they are AWESOME they have rearranged some things to make sure Charlie Claire still gets her full sessions! We seriously can't thank them enough for juggling things around for Miss Charlie Cakes! We LOVE them BIG TIME!

Charlie Claire Kisses Fundraiser:
The lip glosses are selling like hot cakes!!! THANK YOU! If anyone is still interested in ordering please contact Sondra @ charlieclairekisses@gmail.com

4 Weeks Post Op + Occupational Therapy + Lamictal

4 weeks post op:
Charlie Claire's incision is healing awesome.  The day of her surgery when they removed her breathing tube the tape pulled off a tiny bit of skin from C's face and that mark actually looks worse than her incision.  Strange.

OT:
Miss April came today for her first session with Charlie Claire. We have a pretty big list of things to work on with April.

One thing we started on today is trying to get Charlie to self soothe herself, she gave up her pacifier in October and currently, I am her "lovie". However, I can't always be with her and she needs to find something she can use to calm herself. For the most part Charlie is super laid back and doesn't cry often but of course there are times when she gets upset. We also have some sensory things to work on with April so we started on those today as well.  We did some movement things to get a baseline of how C reacted to it and then worked on started to get more textures in her hands.  I have a feeling that April has her work cut out for herself with Miss Charlie Cakes but I am SUPER excited that we are working with her!

Lamictal:
2 weeks ago when we had C's post op appt they did blood work so we could get a lamictal level. However, the blood draw was about 6 hours after Charlie Claire got her morning meds so the level was at it's peak.  The neuro wanted to get another level when the lamictal would be more towards the low end so we had to go for more blood work.  Awesome. The low level came back at a 6 which on the lamictal scale is still fairly low.  However, the past few days Charlie Claire has had A LOT of seizures. We talked to the neuros office today and Dr. M said that the increase in seizures could actually be from the lamictal.  We won't know though until we increase the dose. So, tomorrow morning we will be upping C's lamictal and if her seizures get worse then we will know that the lamictal is contributing and we will need to take her off of it.  If they get better than the lamictal is working and we all would be SUPER DUPER HAPPY!

Physical Therapy

PT has been rough the past few sessions...Charlie Claire is a little dramatic. She isn't a huge fan of being forced to do things so a lot of times Wendy has to trick C! It's kind of funny but also gets a bit frustrating because we are only try to help Charlie. Thankfully Wendy is pretty much onto Charlie Claire's games and just goes with the flow! That is one of the reasons why we L.O.V.E. Wendy!

I mentioned in an earlier post that we are working hard on getting Charlie Claire to stand. We know that she can weight bare on her legs but she seems to get scared when we try to get her to stand so she pulls her legs up.  On Friday, Wendy brought over braces to help give her some support which in turn should make her feel more secure. We worked on it A LOT over the weekend and when Wendy came this morning this is what she got!