6 MONTHS

It really does not seem like it's been 6 months since Charlie Claire's surgery.  When she was 2 months old and we learned C would need to have surgery it seemed as though her getting to 6 months was taking FOREVER and these past 6 months have seemed to FLY by. This morning when Miss Nina, C's educator, was here we both looked over C's short term goals and realized that she has accomplished 3 out of the 6 of them! We know she is doing more and more things on a daily basis but to see it in writing and be able to check something off was such an awesome moment!

It's sort of odd having a child who is developing normally and then having one who is delayed. There are things that Jackson did or is doing that you don't think much about, you just expect your child to do it.  If C weren't a bit behind Jax there are things he is doing we probably wouldn't appreciate as much as we do.  Charlie Claire has definitely taught us to not anything for granted. C loves peek-a-boo but we noticed a few weeks ago that if we put something over her face to play she wouldn't grab it off (something that J-Monster has been doing for quite some time).  This morning Miss Nina got Charlie to do it!!! I don't think most parents think much about their little one doing this but for us it's a BIG accomplishment!!!

Sorry, I couldn't get a good picture of her actually grabbing it...homegirl is QUICK! :)

We talked to Dr. M's office this AM - they had received C's phenobarb level results but not the lamictal.  The lamictal typically takes a couple days. We have been having some issues with Charlie sleeping the past couple of months.  She wakes up in the middle of the night, typically for at least a couple hours.  She doesn't need anything and she is super pleasant (not crying) but it's kind of frustrating - not to mention we are TIRED.  The lamictal can cause some insomnia and her coming off the phenobarb is probably adding insult to injury.  We want her off the phenobarb so it's just something we need to deal with right now until her body adjusts.  We are decreasing her phenobarb dose from 5mL's a day to 2.5mL's a day and then we will stop it in 2 weeks. Charlie Claire has been on phenobarb since she was 3 days old...almost a year. While we are grateful that the phenobarb helped control some of C's seizures it will be such a blessing to have her off of it. After we get C's lamictal level back we will get some more info on where we are going with that. It seems as though the few days we had of fewer episodes are gone...so far today I have seen 8.

On to Action Jackson...

This boy is certainly full of himself these days! J has gotten super vocal in the last few weeks and has added the word "more" to his vocabulary. He has moved on from the army crawl and likes to do a real big boy crawl now.  He isn't a super big fan of us helping him walk but he manages to walk himself along anything that isn't moving. We still haven't come across a food he doesn't like and the boy eats like he is going to the chair. He loves, loves, loves his sister and the dogs. He is very into giving kisses these days and is still not a big fan of napping. For some reason even though we had a staircase at our house the one at my parents is much more enticing...boy is FAST!

Everything But The...

Sorry we have been MIA...we have been packing, painting, moving, trying to unpack (not going so hot right now), etc. for the past week. If we haven't mentioned it before moving is no fun. 

Big THANK YOU to everyone who helped this past weekend with the move.  Mimi for taking the morning shift on Saturday with the littles, my mom and Beverly for being on twin duty on Sunday,  my dad,  Mark, Uncle Harry and Josh who helped Jason move everything on Sunday. We really appreciate all of the help! Also, thank you to Mimi and Papa Jim Jim for helping Jason yesterday with some touch ups around the house.

We are working on getting adjusted to things at my parents house.  Jackson loves my parents house because there are lots of things to climb on and lots of things for him to touch!

We have a few Charlie Claire updates:
- Be careful what you wish for...we hoped, prayed, practiced, practiced, practiced and then hoped and prayed some more that C would start reaching for things and now that she is finally doing so she figured out she can use those little hands to take her glasses off! Super frustrating but we are working on it. Charlie Claire had an eye dr appt last week to check how she is doing with her glasses.  Her right eye drifts outwards a little bit when she is looking in the distance (doesn't seem to happen when she is looking up close) so the eye dr would like her to wear a patch on her left eye for 2 hours a day to help strengthen the right eye.  C HATES the patch. She mopes when it is on and that is only if we can keep her from pulling it off. We are trying a couple different things because the last resort would be to put drops in her left eye every night which would make her vision in that eye blurry the next day and force her to use her right eye and we just aren't super thrilled with that plan at the moment.

- On Monday an Occupational Therapist, Kim, through C's early intervention program came out with C's service coordinator, Stephanie.  I don't think we can say it enough...Charlie's team is A.W.E.S.O.M.E. We are super thankful we get along so well with her team because we see these ladies ALL the time! The OT came out because we have been having some issues with administering Charlie Claire's meds.  She used to be an ANGEL when it came to taking them and now she has figured out all of our tricks. Kim gave us some ideas and strategies on how to deal with medicine time.  I can't say it's gone flawlessly this week but we are working on it.  Charlie and Jackson are super good eaters but we discussed some other food related topics and Kim gave us some useful information on those as well. One thing Charlie is not doing yet it putting things in her mouth besides her hands.  In order for Charlie Claire to learn to self feed she needs to start putting other things in her mouth. Kim gave us a couple great ideas such as putting some whipped cream on C's high chair tray with some crushed up oreos for texture so she can start getting the idea of touching something and then when she puts her hand in her mouth she will realize it tastes good and then start building from there. I am slightly jealous that it is C's "homework" to play with and eat whipped cream!

- This morning Charlie went for blood work to check her lamictal and phenobarb levels.  If your little one needs a blood draw you need to go see Ms. Sandra at CHKD Princess Anne location - she is AMAZING! Hopefully we will get the results before the weekend, you know I am not good at waiting for things! It seems that there has been a slight decrease in the # of episodes, we are praying the lab results will give us some more answers.

Time to go unpack some more...

J's idea of helping me pack was to UNPACK the boxes!

Working on rolling over!

Homemade whipped cream play time!

Monster helped C with her whipped cream assignment!

And then they both needed a bath!

R.E.A.C.H.I.N.G.

Oh my goodness, it has FINALLY happened!!! Charlie Claire started off reaching for our faces and now she has started reaching for OBJECTS!!!! We need to bust out the champagne!!! She is consistently using her left hand to reach for things and occasionally her right. It is so awesome to see her do something that we have worked so hard on!

This mornings PT session with Miss Wendy was great! Now that C has started to reach for things it opens the window to so many other things!

Action Jackson is super full of himself these days! He has been very busy climbing stairs, walking along the furniture, hanging out with his best friends...

Medication Update

The last lamictal increase did not change anything with Charlie's episodes so we are increasing her dose from 20mg twice a day to 25mg twice a day.  A few weeks ago Dr M said he thought the phenobarb may be inhibiting the lamictal from building up in C's system quicker than it was. He didn't decrease the phenobarb last week because Charlie Claire's episodes seemed to be lasting longer and he again wanted to give the lamictal a chance to build up some more. Today he is dropping her evening dose of phenobarb from 5mL to 2.5mL's and then we will go for blood work in two weeks.

Labor Day Weekend!

Vacation is the best! Myrtle Beach did not disappoint! This was the first time we have stayed in a hotel in the last 10 months that didn't involve a hospital stay and it was nice!

I think it's safe to say our first little vacation since having the littles was a success! Charlie Claire is quite the little fish and her "swimming" was the talk of the resort pool (stay tuned for a video!)! Jackson enjoyed some serious guy time with daddy, Nonno, Uncle Jason and Gene and thoroughly enjoyed eating the fruit garnish off every one's cocktails!  I can't say we caught up on any sleep on this trip but it was super nice to be away from our every day life and enjoy some down time. 

While we were gone we had to touch base with VCU about how the lamictal increase was working for Miss CC.  We have not seen any improvement so far and while the actual number of episodes per day has stayed around the same, they seem to be lasting longer.  Dr. M was supposed to decrease C's phenobarb but is not comfortable doing so right now because things still haven't quieted down. This is disappointing since we really want Charlie Claire off of phenobarb but we trust Dr. M's plan.  We doubled C's morning and evening doses of lamictal and will be back in touch with VCU next week.

So Long Sweet Summer...

So long sweet summer,
I stumbled upon you and gratefully basked in your rays.
So long sweet slumber.
I fell into you now you're gracefully falling away.

Sorry, little throw back to my college days of listening to Dashboard Confessional! I can't say we did much basking in rays this summer but we will be getting in on that action as we head to Myrtle Beach tomorrow! We are all looking forward to the time away! Until our next post...