5 Months!

Wow...can you all believe that yesterday was 5 months since Charlie Claire's surgery?!

It's funny that this is bittersweet...bitter since Charlie is still having seizures but mainly sweet because despite these pesky little episodes she is doing AWESOME!!! The old seizures C was having had a HUGE impact on her development while the ones she is having now are more of a nuisance to her.

It is so amazing to watch Charlie Claire on a regular basis do things that she would not be capable of doing if she was still having the catastrophic epilepsy that she was having prior to surgery.  In just the last few weeks Charlie Bear has started to reach for faces, let us feed her finger foods (cheerios, chicken, cheese, etc), C has been baring weight on her legs in her jumperoo for a while but would still pull her legs up when we would try and get her to stand with our help but now she is starting to get more confident and starting to put weight on her legs outside of her jumperoo! Charlie Claire has also visually become much more interested and aware of things which has been super encouraging and amazing to see.  She has just gotten interested in bubbles and has started tracking them!! It's unbelievable to us that she can see and follow something that is almost transparent!! Along with this developmental surge has also come C being a bit more assertive which is great in certain aspects but frustrating when she starts applying it to medication time!

Here are some pics we have been able to get - please don't focus on the "moving mess" in the backgrounds of the photos!!

Reaching for faces!

Standing on mama!

Sweet Girl!

Thank you all for continuing to be on this journey with us and for all of your sweet thoughts and prayers, we really appreciate each and every one of them!

Keep Calm and Carry On...

The east coast has been rocking this week...Jackson and Charlie Claire survived their first earthquake and hurricane.  Thankfully Mother Nature went fairly easy on us and we just got a lot of wind and rain.  We did end up with  a bit of a leak in our bedroom but considering how bad they were predicting this storm to be we are thankful that the leak is the only major issue we had.

Aside from the weather we are still rocking and rolling over here, there never seems to be any down time.  Miss Wendy, Stephanie (C's Service Coordinator - who we love!) and I decided last week to increase Charlie Claire's PT to twice a week.  We all think that having Wendy here twice a week will just be beneficial for CC.  Now someone (aside from myself) will be working with Charlie Claire three times a week total. As we have said before we are super grateful that we are working with such an awesome Early Intervention team. It is such a comfort to know how proactive they are and how we all really seem to be on the same page. 

We are also in the process of moving.  We are going to be moving in with my parents for the time being.  I sat down the other day and wrote a post about it but after re-reading it I realized it is probably best not to share. This move is very emotional for me and while it is the best decision for our family at this time it still is something that I am coming to terms with.  That said, packing is no fun.  Packing is even less fun when there are two babies around who want your full attention! Anyone interested in coming over and occupying them for a little bit feel free to let us know! :)

We want to congratulate Jason's cousin Brad and his wife Sondra on their birth of their baby boy! Miles Oesau Palchinsky​ arrived on 8.21.2011! Mom and baby are doing well and we can't wait to meet their sweet little one!

Lastly, the other day I asked if you all would pray for Oliver (Lanier Landing) after he underwent his first brain surgery in hopes of seizure freedom.  Tomorrow he will be having his second surgery and this surgery will be the bigger of the two.  The first surgery was to place a grid (basically an EEG that goes directly on your brain instead of your scalp), after days of monitoring Oliver and his seizures the dr's have determined the area where his seizures are coming from and tomorrow they will go in to remove said area.  Again, if you could please keep this sweet family in your thoughts and prayers while their little boy undergoes such a major surgery tomorrow.

Trying to help with the packing!

Do you happen to notice the little fingers going in for the kill?!

The hurricane didn't stop C from working on her PT!

Hello Handsome!

That's right...it only took 10 months but we finally got a enough hair for a bow!

Classic Jackson "I didn't do it" face!

UGH...

Charlie Claire went for blood work on Monday in order to get a level on her lamictal.  Therapeutic is between 4-12 and Charlie's level was at 0.9.  The Dr. said that he thinks the phenobarb is inhibiting the lamictal from building up quicker in C's system.  We are increasing her dose from 5mg twice a day to 10mg twice a day and calling them in two weeks to let them know how Charlie is doing.  At that time they will decrease her phenobarb, the Dr. wants to give the lamictal a chance to build up a little more before dropping the phenobarb again.

I know this probably sounds crazy but I was hoping her level would have been closer to therapeutic so we had a better idea of if C is going to need surgery.  As I have said before, I am not patient and this waiting game is killing me.  I am not "wishing" another surgery on Charlie Claire but I just wish we had a better idea of what the next few months look like for us.

I know we have mentioned Oliver on the blog before.  Oliver is a sweet little boy who has Tuberous Sclerosis Complex and this causes him to have seizures and infantile spasms. Oliver underwent his first of two surgeries yesterday in hopes of putting an end to his seizures.  Yesterday, I found myself extremely emotional and overwhelmed for Oliver's mom Stephanie.  She and I have become very good friends over the past few months and thinking of what she was going through yesterday as she handed her son over to the surgeon brought back a lot of memories for me. The North's are proud to be on the O-Team and we ask that you please keep this sweet family in your thoughts and prayers.  You can read more of Oliver's story here: Lanier Landing

Friday Wrap Up

Tuesday morning Charlie Claire had another vision assessment with Donna.  The assessment went really well and there are definitely areas CC has improved in since her last assessment in May and now we have some new areas to focus on.  Last time Donna was here she recommended Charlie getting registered with the Virginia Department of the Blind and Visual Impaired.  We hadn't done much with this but C's service coordinator went ahead and sent the referral over and amazingly we got an appointment for the next day - it usually takes a few weeks.

Wednesday the lady from the vision department came out and did not need to do an assessment since Donna had just done one the day before but basically she went over all of the things that are available for Charlie now and in the future.  I know it sounds silly but we don't ever think of Charlie Claire as being partially blind or visually impaired even though we know that she technically is.  Since Charlie is so young it is hard to say exactly what she will need down the road, if anything at all. So while we are grateful that Charlie has so many services available to her throughout her life it is also weird to think that she may need some of them. 

This morning Miss Nina was here for C's weekly session.  Nina always brings such fun toys for Charlie to play with and she also worked with Charlie on a couple of the vision things that Donna had suggested earlier in the week.  Here a couple pics from this mornings session.

Glasses Bandit!

As requested, a little clip of Jackson going in for Charlie Claire's glasses! My apologies for the video ending pretty quickly but mama needed to intervene!

PT Time!

We love Miss Wendy time! It's so nice that we all get along with Miss Wendy so well and we really rely on her BIG TIME.  Last week when C wasn't drinking she was the FIRST person I called because in the grand scheme of things she knows CC better than some of our family and friends because she is around her more. It is such a comforting feeling to know that Wendy is as invested in C and her development as Jason and I are.

It is always so amazing to me that for the most part Charlie Claire will let Wendy do just about anything to her.  CC had a really great session this morning, despite having a bunch of episodes.   

Getting some weight on C's arms

Tracking her toy while in that same position

Working on using those hands

Time for a little back stretch

Balance work

Jackson is always super interested when Miss Wendy is over and doesn't quite understand why Wendy plays with Charlie Claire more than she plays with him! It is not the easiest to keep him occupied during PT time but we do our best!

Could this face be any cuter?!

This little boy LOVES books!

Tomorrow morning the vision specialist, Donna, is coming back out to do another assessment now that Charlie Claire has had time to get used to her glasses.  Jason and I were so concerned about C's vision loss but she seems to be adapting and adjusting so well that if you didn't know she had vision loss you probably wouldn't be able to tell.

Happy Monday!

Whew...

Seriously - sometimes I don't know how we get through a day, let alone an entire week. 

To make a long story short...

Jackson woke up with a cold Sunday followed by Charlie Claire waking up Monday with the same cold. CC likes to take things to another level so she one upped Jax by REFUSING to consume any liquids and getting an ear infection.  Is this considered sibling rivalry? Thanks to Miss Charlie Cakes refusing fluids her pediatrician sent us to the ER at CHKD Wednesday night fearing that she may be dehydrated and that could trigger seizures (from what we know, nothing triggers C's seizures but we wanted to be safe). Uneventful...thankfully C was NOT dehydrated and we were sent on our way. Charlie Claire continued on her drinking strike until Thursday night when she finally decided it was time to get back in the liquid business! Both littles still have the sniffles but things are looking up.

Fun huh?!! :)

Someone felt well enough to try and dig into Jeter and Ripken's toy bucket...

I didn't do anything....



A picture is worth...

It is super easy for me to get ahead of myself sometimes, OK, let's be honest - most of the time.  I work with Charlie Claire every day on her physical therapy and sometimes I am so focused on working on things she hasn't quite gotten the hang of that I don't acknowledge the things she is doing.  I am so focused on getting Charlie to reach for an object and put it in her mouth that I didn't relish in what a huge accomplishment it is for her to be sitting or that peek-a-boo is one of her favorite games right now and when people play it with her she laughs HYSTERICALLY! These are certainly things she wasn't doing before her surgery and things that probably would not have been possible if it weren't for that surgery. While Jackson is pretty much following that pretty little developmental milestones chart that is in every baby book to a T, Charlie Claire is going to do things on her own terms and in her own time. 

I have officially gotten to the angry stage of our current seizure situation.  I am not angry at C's surgeon or anything along those lines - just angry that this sweet baby girl potentially has to go through another surgery.  I know that if surgery is what has to happen that Charlie Claire will rock it out just like she did the first two because so far in her almost 10 months of life she has rocked out everything else that has been thrown at her. I don't like that it will take us almost another month until the lamictal gets to a dose that could potentially help these episodes that CC is having. I am thankful that these episodes are not having a negative impact of her development but I just wish they would go away.  

Back to me getting ahead of myself...I am a planner and I would prefer to know NOW if C is going to have to have another surgery, I am not a fan of the waiting part.  I believe someone is trying to teach me patience. I trust that in time whatever is meant to happen will happen.

When I start to get ahead of myself I think it's important to try to bring myself back into a normal range.  I went through some pictures from the past year to remind myself just how far we have come...

Welcome to the world Charlie Claire!

Before the word seizure ever entered our vocabulary

At 3 days old C started having episodes. NICU @ VA Beach General Hospital

Charlie was transfered to the NICU at CHKD in Norfolk for her very first EEG and MRI. Last night at CHKD!

In December 2010 we learned Charlie was having "silent" seizures and she was admitted to the PICU at CHKD in order to adjust medications and monitor her on a continuous EEG. This is when we learned she would need surgery.

CHKD PICU

CHKD PICU

4 hour Video EEG at CHKD in January 2011

Charlie Claire was sent to VCU Medical Center because CHKD could not perform the surgery she needed.  EEG in February 2011, thank you steroids for those cheeks and that belly!

Immediately after surgery

Black eye and swollen



No more steroid cheeks! Happy girl!

Working on sitting and playing!

Sassy pose!

Romans 12:12 Be joyful in hope, patient in affliction, faithful in prayer.