homonymous hemianopia

We have had some questions about Charlie Claire's vision loss that resulted from her surgery.  We just recently received the report from the functional vision test she had in May so we figured we would give you some information from that. Homonymous Hemianopia is the proper term for the right field of vision loss that C has. Basically her vision looks a little like this...

In order to see the whole picture, C will have to learn to turn her head where you or I would just be able to scan our eyes. At this time C seems to be accommodating very well to her visual field loss but it is something that we work on every day.  Ultimately her eyes are "healthy" but the bottom line is that you see with your brain. Since the left side of Charlie's brain that controls vision is gone that means the vision in the right side of each of her eyes is gone. (side note: the left side of your brain controls the right side of your body and the right side of your brain controls the left).  The last time we were at the eye doctor in April (right when we got home from Richmond) her exam showed she has astigmatism.  The doctor wanted to give her some time to heal from surgery before determining if she needs to be put in glasses. We go back on July 11 and we make the decision at that time. 

8 Month Pictures!

Last weekend our photographer, Jessica Smith, came over and photographed the twins. We were supposed to get their pictures done when they were 6 months old but with C's surgery we bumped it until now. Jessie always amazes us because our babies certainly were not cooperating on this particular day.  In typical Jackson fashion he didn't take his morning nap and therefore lived up to his nickname and was MONSTER the majority of the time and C was cutting her first tooth, need I say more?!!  Somehow, someway Jessie managed to take AWESOME photos of our littles! Please check our her blog Jessie Smith and PLEASE leave a comment on the blog so we can win a photo!

You should also check out her other photos while you are there, she is amazing...if you are getting married or have little ones you should probably call her! :) Can't wait to see her again when the babes are 1!!



Busy Week!

Nicole (Charlie Claire's God Mother) and Caitlin (Jackson's God Mother) are two of my cousins and they are very special to us! I was lucky enough to be a part of Nicole and Caitlin's lives since they were babies. I did not have any sisters so I always thought of them as my little ones! Nicole turned 21 on Wednesday and Caitlin graduated from high school Friday night! Jason and I were able to go out on Wednesday night to celebrate with Nicole for a bit and then on Friday I got to watch Caitlin walk across the stage! Seriously, where has the time gone?! We love you ladies so much!!

My brother (C's God Father) was also in town this weekend and got in some serious Jackson and Charlie Claire time! It was nice having him (and an extra set of hands!) around! I think he was happy to pack his bags and head back to NYC...after being with our babies for an entire day, Uncle Jason needed a nap by 4pm! The twin thing is no joke!

Father's Day!
Super busy day.  We met with our awesome photographer Jessie Smith for J-Monster and CBear's 8 month pictures. Jessie totally had her work cut out for her...it's so difficult getting both babies to cooperate at the same time! Then we headed to Caitlin's graduation party! Not a very relaxing Father's Day for my husband but a memorable one nonetheless! Looks like one of the twins is FINALLY getting a tooth!!! Felt it poking through C's gums yesterday!!! YAY!

Jason...you are the most amazing dad to our babies, they are so lucky to have you as their daddy and I am so lucky to have you as my partner in this parenting journey!!! Dad...Thank you for being the best dad ever and helping shape me into the person I am today! I love you very much!

Can not wait to see the rest of the pictures!

CBear News:
Keppra: We have been playing around with the dose and did another increase on Saturday to see what happens with her little eye thing. It's been happening about 5-7 times a day. The neuro still isn't concerned so neither are we.

PT: Miss Wendy is our favorite! C loves her so much and you can really tell how much C trusts her! We are adding a developmental educator once a week, in addition to her PT.  Miss Wendy feels that now is a prime time for C's development and thinks having another set of hands on her once a week will be really beneficial.

Break It Down...

A little honesty...remember that post surgery funk I mentioned not to long ago? After Charlie Claire's EEG I felt that the funk started to lift a bit but I've come to realize that it hasn't lifted, it's shifted. My focus isn't so much on thinking that every move C makes is a seizure but now it's more on mourning the loss of the baby I had expected...the baby who looked completely healthy during all of the ultrasounds that I had when I was pregnant (with twins you get A LOT), the baby who appeared perfectly healthy the first 3 days of her life...

There is another blog I follow (her daughter has Down Syndrome) and here is a little something she wrote....

Parenting a special needs child is complicated. No one knows what the hell they are doing and somewhere, deep inside many of us, there is still hurt.

Here's the thing. I don't know what the hell I'm doing. And at the same time, I know exactly what the hell I'm doing and I believe in it with every breath in my body. Because I am governed first and foremost by love. I applaud and celebrate all the other ways people are doing it out there because I know they are governed by the same. Together, we are all fighting for the same thing. Special needs, typical needs, one kid, two kids, young kids, old kids, no kids. We are all on the same team.

Am I scared? Yup, sometimes. Am I hopeful? Definitely. Am I aware of the reality of what we are facing? Absolutely. But mostly?

I am happy. And I am in love.

Charlie Claire isn't a disappointment in any way, shape or form -- she is perfect in every way. The initial hope and dreams we had for her aren't gone, they are just different.  The initial ideas and things Jason and I talked about when I was pregnant with the twins..having two littles doing the same thing at the same time hasn't exactly gone as planned but in some strange way it's going as it should. CC has already taught us to slow down and appreciate the small things and little victories and I have a feeling she has a lot more teaching to do!

While at times it still feels like I am getting hit by the same bus that hit me on October 14, I am beginning to realize that not only are Jason and I up for this challenge but we are going to rock the heck out it!

Visitor!

We had a visitor this past weekend, my awesome friend Danielle came in from Michigan!! It was super nice to have an adult around with me all weekend!! J & CB took very well to D...

Jackson didn't waste any time putting some moves on Danielle, after all they were sharing a room!  Charlie Claire had lots of stories for D and pretty much loved all the snuggles Danielle was willing to give! Thanks for loving on my babies all weekend D, you are the best!! We miss you already...

Hearing Test:
Charlie Claire had  her hearing checked today. She had a hearing screening when she was a newborn at Beach General and then again at the NICU at CHKD and passed both times but Dr. Cotton wanted us to do a follow up - not because there was any cause for concern, just to make sure all was good on that front. As expected, everything is fine...C passed!! It was probably the easiest dr appointment our sweet girl has ever had!

Movin'

Charlie Claire's Early Intervention Program is awesome! Today we went on a little field trip to the zoo in Norfolk that the program offered! Neither baby was interested in the animals but they sure LOVED the people watching! They both enjoyed being outside and all the things going on around them so they were super cooperative!!

Yesterday we mentioned that Jackson is on the move! We were able to get a little video of his army crawl today!! Watch our little man go!!!

Today we got Charlie Claire's first medical bill for her surgery. Thank goodness for insurance! This bill does not include any Dr's, the surgeon or the Anesthesiologists...

On a completely different note...
Jackson and CC are going to have lots of new friends coming in a few months...Jason's cousin Brad and his wife Sondra are expecting their first little one in September, my cousin Candace and her husband Robby are expecting their third little one in December and our wonderful friends Mark and Beverly will kick off the New Year with their first baby due January 1st!!!! We couldn't be more excited for all these new littles!!

Last week we took CB to CHKD for a NICU Follow Up Clinic visit, thank you Aunt Theresa for going with us!  A little back story...C was moved to the NICU at VA Beach General when she was 3 days old which is when we first started noticing her "episodes." By the end of her first day in the NICU it was determined that Charlie Claire was having seizures and was started on phenobarb.  Beach General was not equipped for CBear to have an MRI or an EEG so after 6 days she was was then transferred to the NICU at CHKD and was in there for 6 days.

Babies who graduate from the CHKD NICU  get "invited" for this follow up appointment so their development can be followed and if need be they get plugged in with different services. C's first appointment was scheduled for February but we rescheduled it because at that time she was seizing all day every day and we didn't really think it was a good time for her to go. We were hesitant to go to this appointment because Charlie Claire is already in the Early Invention Program through which she receives physical therapy and vision services so we thought this appointment might be a tad redundant.  We decided to take her anyway because we didn't think it would hurt to have another set of eyes check her out. Next time, we will go with our gut. I am sure that this program does wonderful things for babies that leave the NICU but we will take advice from Miss Wendy, Dr. Morton and Dr. Cotton (pediatrician) who see Charlie Claire on a regular basis and who know her ins and outs then some Dr. who read her chart, asked us some of questions and spent 5 minutes interacting with her. Overall, since C is already receiving PT and the vision services they didn't have any other suggestions but the Dr. just wasn't the most pleasant person we have come across. 

One positive outcome of the CHKD visit was stopping by Dr. White & Dr. Torre's office! Dr. White was C's neuro in the NICU and he followed her until we went to MCV, Dr. Torre was the Dr. on service when C was admitted to the PICU in December...he was the one who broke the news to us that C was going to need surgery. We LOVE Dr. White and Dr. Torre! Unfortunately, we didn't get to see Dr. Torre but we did get to see Dr. White and he was AMAZED at how great Charlie Claire looks! He hasn't seen CC since February when she was at her WORST so he is extremely pleased to see her doing so well!

This morning Miss Wendy came over and C had a great session. Miss Wendy loves how CBear gets more and more social each time she sees her! We are currently working on sitting up, holding toys, reaching for toys, eating solids, rolling over, etc.


J Monster
Our sweet little boy is a piece of work! Jackson officially has a temper...not sure where he gets that from! :) He also does not like to nap which makes it pretty impossible for Mama to get anything done while he is awake...J doesn't play so well by himself, he likes constant attention! Jackson is an army crawling fool...he has no problem getting exactly where he wants to be and even a few places we don't want him to be!

A couple littles that I know will be turning 8 months old in a few days...

Helping Mommy clean up the kitchen!

Jackson falling asleep during his evening bottle because he didn't take an afternoon nap

Memorial Day Weekend!

J & C had the most fun time at Aunt T and Uncle Harry's "kick off the summer" BBQ! I think it's safe to say that we have water babies on our hands...and we LOVE it! :)

A few months ago I became friends with Stephanie. Her sweet little boy, Oliver, has TSC and this causes him to have seizures.  Stephanie and her family live in NC but were in town this past weekend so after lots of emailing, calling and texting we were all able to meet in person this weekend! I won't cheapen our friendship with too many words, but I will say that I am super thankful to have Stephanie in my life!

Oliver is just the sweetest, most handsome boy! Doesn't C look super amused?!