Six Month Review

I haven't written an update about our girl in awhile. Seems appropriate now that she's nearly 7 months old. Wow - where did that time go?! We've been defining and navigating our new normal since Miss H came home from Children's Mercy. I'm finally starting to feel like we're settling into a nice routine. We've had some appointments at CMH (her 6-month checkup; new PT visits each week; OT follow up; counseling; and most recently some eye specialists), but its all Good.

Dr. Facchini continues to monitor her progress and has her on some new medication to help with the seizures that appeared right after her 3-month appointment with him. They aren't grand mal (where she stops breathing), but they do involve three different types of muscle holds/twitches. Dan has lovingly named them so we know which kind she's having and can monitor her episodes accordingly:

- Angels: She'll stare/have rapid eye movement toward her left shoulder. We call this "Looking at her angels." It's harmless and usually just means we can't distract her during this episode. It generally lasts less than 10 seconds.

- Hamlet: She'll thrust her left arm up to the ceiling and to her left while looking at her open hand. Reminds us of an actor in Shakespeare:) This was her most severe when they started and sometimes would last more than a minute. Her whole body will stiffen and she can't be distracted. It was scary when we first saw it, but it's just her 'Hamlet' now.

- Angry Bear: Both hands will open suddenly and her arms are spread wide from her body. If she were to growl, she'd look like a bear. Usually her arms shake or move uncontrollably. This started when she was learning how to grab her play gym toys. It's as if her brain is trying to work around the damaged parts and struggling to make her limbs do what it wants them to do. We like Angry Bear because we know it means she's about to master a new skill. We don't see this one very often, but it lasts the longest out of all of them.

The medication is helping, but so far hasn't gotten rid of any of them completely. We're in the middle of experimenting with different dosage levels, and sometimes that means we have a very zoned out little girl. Those days are hard for me. All any mom wants is for their child to be healthy, active and happy.

Like I said, we have a new normal...and that's ok.

Good days are phenomenal. She's experimenting more with her voice and speech. She loves "agoo," "ba," "ay," "aay," and a combination of all. Sometimes she's so insistent, we wonder if  she's really trying to tell us something important.

She's learned how to grab toys, although she doesn't grasp them very long. Her favorite thing to do is lay on her back on her play mat and hit the dangling toy zebra, hippo and elephant. Dan found this new toy at a local consignment sale that she LOVES to engage with. It's a mirror surrounded by soft, zebra striped fabric with a musical feature. When she taps it, it will giggle at her or play a short tune like "You Are My Sunshine."

And she continues to enjoy it when you read to her. I never realized how horribly gross fairytales are...but she mainly just likes the sound of your varying voice (we of course get into character while reading). She'll bat at the different photos and "comment" every now and then when she hears something she likes.

She smiles often and responsively to our voices, although we still haven't heard a laugh.

Her Physical Therapist, Stacey, comes every Friday afternoon to work on core strength and stretching her muscles. She pushes her to roll over and do things she needs to be doing right getting her to hold her head up during tummy time.

A few weeks ago, we had a huge breakthrough that Dan caught on video:


We've also started (slowly) introducing solid foods. First, with rice cereal and then gradually some veggies. She's still trying to figure out how the spoon works, but it's fun watching her progress and try new flavors:



She's still not tracking well, so it was recommended from her 6-month visit to see an eye doc. We go back to CMH for that this Thursday.

My Promotion It's been a whole new world balancing work and time with H. But, I love my job...and evidently I'm doing something right because at the end of March I was given a new title and some added responsibilities. Our team has changed quite a bit (nearly doubling) since coming back in January. Our area is getting a lot of positive attention from the executive team and although our work is challenging, it is fun. I'm very blessed to have this opportunity and I look forward to what the future holds for all of us.