We have started a facebook page if you want to follow along with C.

https://www.facebook.com/CourageousClaire/

Not fair for E

It's not fair.

E got all excited that C touched him hand tonight. She didn't mean to,  but she did.  And he lit up with excitement. C is almost 9 months old. At this age she should be interacting with him, laughing at him and oh she would because he is a goofball, taking his toys and eating them... but he gets excited that we put her hand on a toy that he hands her as if she is takimg it from him or that she touches him even if by accident. It's just not fair. Things like this break my heart. I hold back tears in the bathroom as E sits on the bed watching the tablet.

It's not fair to him that he won't experience the things he should with a younger sibling. It's not fair that C screams in what seems like pain and E gets "ignored". It's just not fair.

Here we go...

It is insane how much you have to pack to travel with a baby. My mom has a crib, high chair, single stroller, rock n play, toys, toys, toys, and tons of other baby and kid stuff already at her house, which helps a lot, but omg it is still a lot to pack! Bottles, warmer, therapy stuff for C, planning how to sleep since we need two bedrooms...

We were going to attempt to drive up to MA on Saturday morning. I told people there was about a 25% chance we could get into the ~12 hour drive and say “screw this” and turn around. We kept remembering that we want to see my dad/Grampy (he could get sick this winter and that would be a bad thing), GraNana (she is 87 years old!) , C’s “god” parents, cousins, etc.  E is very excited to see Grampy and Mema, his cousin S, and to go apple picking.

The kids both woke up and C had been screaming for hours. We were running late and while swapping cars in the garage I ended up nabbing into the garage door 3 seconds too early. So there went leaving.  Scott got us partially down but we had to wait to have someone "fix" it.  But it will need to be replaced to work.  At least that was on our list of things to improve on the house since it is so loud when it opens and shuts.

We decided to drive about an hour a different route, not necessarily out of the way, to stop at Sesame Place. It will was a great break point and allowed E to get his energy out and C to get stimulation and move around for a few hours. Sesame Place was AWESOME!

It is so extremely stressful and anxiety inducing to travel with two kids, even more so with C with all her therapy stuff and she has been having spells of screaming for hours at a time recently, like she is in pain. So stressful!

They were both pretty good overall. Well E was great. C just didn't want to be in the car seat at a certain point. We definitely  need a bigger car though.  

Cortical Vision Impairment

Bad News:

C was officially diagnosed with Cortical Vision Impairment (CVI) http://www.littlebearsees.org/what-is-cvi/

This basically means her brain has trouble processing what she sees. In a way she is somewhat “blind” even though that word is a bad word because she can see something’s, just intermittently. Our gut feeling that she can either see or hear but not both at the same time was right. And it makes sense that she seems to really like the dark red bathroom.

Good News:
It is what we expected and it can be improved with therapy. Her optical nerves look good and she does not need glasses. Some kids improve greatly while others improve in other ways. The doctor told us she had an 8 year old in the other day and he could read the eye chart with full 20/20 vision, but he can’t recognize faces. They put in an official referral for Vision Therapy so we will be up to 5 therapies.

From the handout:

• Abnormal light response - light gazing or photophobia
• Swiss cheese vision with holes of gaps in the field of vision
• Holding objects close to face for viewing
• Vision can be variable, changing throughout the day with inconsistent visual response to the same stimuli
• Brief fixation on toys or stimuli with intermittent following
• Visual field loss with gaze preference (i.e. holding eyes to one side foe viewing)
• Fatiguing from visual tasks
• Reliance on peripheral vision when reaching
• Visual attention from moving stimuli is better than static stimuli
• Lack of eye contact
• Impaired visual curiosity
• Ability to identify colors if stronger than perception of form
• Presence of other disabilities in some children(seizure activity, speech delay, gross/fine motor delay)

Children with CVI display varying levels of vision recovery at different intervals. Some children improve their visual function considerably and other retain severe visual impairment... In children with cerebral visual impairment, services of trained and experienced teachers are very important for the child's development and education... There is no specific treatment for this condition. 

C laughed today!

Scott called me in the middle of the day and says "can you hear this? "

She was laughing! I started crying and felt like I couldn't breath... in a great way. We weren't sure if we'd ever hear her laugh. I felt like walking around the office hugging people.

He caught it on video... here is the YouTube link: https://youtu.be/kal_DvZXzP0

E tried martial arts tonight.  He loved it.

Picture from the video:

Food and Fun

What C has eaten:

• Sweet Potato
• Avocado - hated
• Butternut Squash
• Sweet Potato with coconut water
• Peas
• Pears
• Banana - made her stomach super upset
• Apples
• Butternut Squash with Apples
• Sweet Potato with Apples

She has a strong tongue thrust so she doesn't just devour it, takes longer than a typical baby to feed her. But she does swallow it and usually seems to enjoy it. When she first tried apples she seemed mad that I wasn't getting it in her mouth fast enough. When she first starts eating though she stiffens her body and reacts like OMG what did you just put in my mouth, OMG OMG OMG all stiff like a board with her stiff face. Then she is like hmmm okay, yeah, I will eat this, okay cool. 

At her 6 month appointment: She weighed 14lbs 1 oz (13th percentile). She grew an inch and is 24.5" (6th percentile) and her head grew 1cm to 15.26" (1 percentile). We know her head will be small so as long as it keeps growing a little we are happy. He weight we have been very concerned about, having her keep gaining so that we can try to avoid a feeding tube. She went form 11th percentile to 13th so that is great. They were also very happy with her BMI, said it increased to almost 50th percentile and the pediatrician feels that is the most important over just weight. 

They gave me a developmental thing to check off at the doctor. She had a few always, a few sometimes, and about 95% "no yet" answers. The Not Yets were things like how she does not pick up a toy, hold a toy, move between hands, bring to her mouth, try to grab a toy if dropped in front of her. Doesn't say Da, Ba, or other syllables. The "always" were all in the communication  section, that she coos, she looks towards a sound, she startles at a loud noise. The sometimes were things like she puts weight on both legs when you stand her up, she will stay in a crawl position (she won't get there all by herself but she likes it when she is there).

She had to get one shot and she is not happy. She has a cold/reflux cold and that on top of the shot she is not a happy camper now. We think she is congested from the reflux but E has been sick so it could also be a cold. Poor girl is all stuffed up.

C has been working on sitting with PT and with CBRS/DT. She is improving. If you position her she can sit for a few seconds before falling. I have read a few blogs/posts from moms with kids with CP who work really hard to get just this. So this is a win, as long as she can sustain it

E got his playset, late bday present. What an investment, but we know it will get used over time and it will also help us later when he wants to go to the park and we are too busy with C. The company will also move it for us when we move in the future. They will also re-do the mulch and boundaries. It takes up about 40% of our backyard... but it is nice. Now E just needs to learn how to pump on the swings so he doesn't make us come out and push him all the time. And get something to repel the mosquitoes.

Getting off Keppra, OT, and other stuff

Lots of updates. I have been waiting to write this but could not until today due to work stuff.

Now that org charts have been sent out I can officially talk about it. My role will be changing from being the “Senior Product Manager for Consumer Accessories” to the “Senior Product Manager for Consumer Desktops, All-In-Ones, and Monitors”. Going to be a learning curve but I am excited to develop and manage the portfolio for NA for the #1 computer company in the world!

Our house closed in Texas! Yay. So happy to be done with that.

On to C…

C had her Occupational Therapy assessment. They recommended weekly sessions to work on her hands for holding things and on her feet/legs since they don’t seem to “talk” to each other about moving.  So she will have CBRS/Developmental Therapy, Physical Therapy, and Occupational therapy all on different days, every week. And Speech Therapy still monthly but that could increase in the next few months.

We have been weaning C off Keppra for the seizures they saw while in the NICU. We were never too convinced that she was having them. Small sub clinical seizures were detected the first night she was being warmed. The second night on medicine a nurse who had never held C before was on-duty and when feeding her for the first time, thought she saw her eyes do something weird and therefore said it was a seizure and they doubled the medication automatically. C has been doing good, they never saw physical manifestation of the seizures in the NICU but they told us what to look for. She has a few more weeks before she is totally weaned but she is already appearing more alert and is looking around more.

Still no updates from the Lawyer, Cap C, or Medicaid. We applied for the Waiver for Children with Developmental Disabilities…. 5 year waiting list! Insane.

Super nervous about moving E to a new school. Luckily his BFF is going to also move and we got them in the same classroom. More nervous about him moving than about starting C for a few hours a week. 

What’s up next:

• Backyard playset delivered and installed next week – yay!
• C’s 6 month appointment – we think her reflux might be worse and need a higher dose of medication
• C’s pediatric ophthalmologist appointment to get clear information about her vision issues; confirm it is Cortical Vision Impairment (CVI), how bad is it, can it be improved by adding Vision Therapy to her regiment etc.