Tuesday, August 28, 2012


Sorry for the teaser back in this post when I mentioned that Waverly was blind but didn't elaborate or explain any more.  I've had several people ask about it since, and each time I am reminded that I owe you all an explanation! 

When Waverly started one of her new seizure meds back in January (Sabril), she was required to start going to eye appointments every three months since one of the most common side effects of that medication is peripheral vision loss.  We of course chose to continue with that choice of medication because the effects of the Infantile Spasms were much more harsh than the potential vision loss she could face.  So as a result, she now has regular eye checkups. 

At her last check up a couple of weeks ago, the doctor was doing his normal exam, but started to mention how she was inconsistent in her response to visual stimuli.  Sometimes she would notice or "see" it, sometimes not.  He started to ask lots of questions about what she seems to see and pay attention to.  As I explained to him, things started to dawn on me.  We've known for a while that she was far sighted.  But the things she most pays attention to involve lights and sound (faces, tv, toys with flashing lights, trees blowing outside, windows, ceiling fans).  When either of those are removed, she doesn't seem to "notice" as much.  The only exception to that is faces.  However, when she is looking at a face, often that "face" is talking to her (i.e., making sound).  The doctor mentioned a term, Cortical Visual Impairment, that I'd heard before in reference to other children with brain/neurological issues, and said he considered her to have that condition.  He explained that although we know she can see, it is unclear exactly how well she can see and how well she can actually process what she sees.  Her eyes have vision, but there is some sort of processing deficit from her eyes to her brain.  Of course, that makes sense given that she is missing brain matter! 

The American Printing House for the Blind website defines CVI as this: "Cortical visual impairment (CVI) may be defined as bilaterally diminished visual acuity caused by damage to the occipital lobes and or to the geniculostriate visual pathway. CVI is almost invariably associated with an inefficient, disturbed visual sense because of the widespread brain disturbance." 

I was fine with all of this since we know she has issues with her brain and since I'd even heard the term CVI before and knew of children with it.  But it was when he mentioned that he would fill out any necessary paperwork for services for the blind that hit me.  Services for the BLIND?  So she's blind? 

For some reason, using that word hit me differently.  It's never fun to get yet another diagnosis to add to the list.  That list is ever growing and it's almost absurd how a new diagnosis can be added at any given appointment on any given day.  We'd always joked that her eyes and ears worked fine.  Obviously that wasn't true anymore either. 

So, it's not that anything about her or her ability to see has changed, it's just been made more official.  Our baby is now also blind. 

I can hear you saying, "But I've seen her interact and notice things.  I know she can see!"  Yes, we know she can see too.  But it's just not clear how well she can see or how well she can process what she is able to see.  So, she is technically blind.

That's one thing about "this life" that is so interesting.  On any given day, at any routine appointment, you can get slammed with something that you weren't expecting at all, and all of a sudden you are asked to deal with yet another blow, even if it seems small to someone or not a big deal or seems maybe not even totally true (see the paragraph above). 

One thing we are so very thankful for is the fact that she can see some.  We know she obviously reacts to people and faces.  She makes eye contact and communicates through those sweet little eyes, with her sweet little coos and smiles.  When she was born and we got her initial diagnosis of Lissencephaly, one of my biggest prayers and hopes was that we'd be able to see our baby smile.  The Lord has blessed us so incredibly with a resounding "YES!" to that prayer, so even in light of this new diagnosis, we are thankful for the blessings He has poured out to us in our sweet baby girl.

Monday, August 27, 2012

Sick again

Waverly had a couple of seizures on Friday and just seemed not herself on Saturday. On Sunday she woke up just before 5:00 in the morning with a seizure and a temp of 101. As soon as the doctor's office was open we went in and she was diagnosed with another ear infection, and the other ear was on its way to being infected. She's felt terrible and had lots of congestion with it as well. She's on antibiotics once again (omnicef). Please pray that she will get better and for her congestion. It's always dangerous when she's junky in her chest because she can't cough as well due to her low muscle tone so the congestion tends to settle in her chest and can cause pneumonia. I also worry about her aspirating with the increased mucous and secretions. So we've been doing lots of chest PT and suctioning. The meds seem to be upsetting her tummy tonight and she's had increased neurological activity too which is driving her crazy and making her very twitchy. She's also needed more oxygen, mostly when sleeping but a little when she's awake too.

Monday, August 20, 2012

Summer Pictures

Just a few cute pics from earlier this summer.  Enjoy!

Saturday, August 18, 2012

Just tired-Stream of Consciousness

It's been a crazy few weeks.  We've had lots of traveling (one trip to visit family that corresponded to a work conference for Johnny, and another trip to visit friends).  We've had sickness (some sort of congestion/virus for Waverly that's passed through Johnny and me as well) that turned into an ear infection for her, exposure to strep throat and croup, a new diagnosis for her (she's BLIND: I'll blog more about that later), and just some emotional things for me to deal with in the midst of all of this.  Needless to say, I'm feeling pretty weary these days.  There have been blessings in these weeks too: sweet time spent with family and friends; time spent together just as our family; wonderfully behaved kids on long car rides. 

Sometimes, I wonder if this is just old hat for people now.  They see Waverly out and about, see us dressed and put together, and assume everything is great and we're all doing so well.  But there are times when I feel like I am running on empty and don't have much left to give.

I am looking forward to fall and hopefully things calming down a little bit more.  We have one more trip this month for a cousin's wedding, and another one next month for a family event, and of course football games are coming.  I don't think we'll ever be bored!  I know all things considered, we are so blessed.  Waverly has been relatively healthy (read: out of the hospital), but there are times when I feel like we are just waiting to go back in (like with her UTIs).  I'm exhausted, yet not sleeping because there is just so much on my mind and I long for a break, but never truly get one since there is so much work in just arranging care for her and the two older kids.

But I am savoring the little things.  The times when Waverly fusses because she's tired and wants to be held, and then stops when I pick her up and nuzzles into me and drifts off to sleep.  Playing cars with my son.  Reading with my daughter.  Family walks pushing Waverly in her wheelchair or stroller while the big kids ride their bikes.  Quiet evenings on the sofa with my husband after the kids go to bed. 

Thanks for your sustaining prayers in all this time.  I know that those prayers, and God's good grace, keeps us going.  

Wednesday, August 8, 2012

Ear Infection

Last week on Monday evening Waverly had a rough night with being up sneezing and coughing.  We were visiting family with dogs, and although she's been around animals in the past I thought maybe she was having allergies.  But she continued with her congestion, and although it didn't get worse, it didn't seem to get better, so we figured it must be viral.  We took her to the doctor on Monday of this week and she was diagnosed with an ear infection, and is being treated with amoxicillin for that now.

We also have been talking to her nephrologist (kidney doctor) who is now referring us to a urologist at UVA since she's not quite sure how to treat her recurrent UTIs.  That appointment isn't until October (for now), so please pray that we can either get that appointment moved up or that she remains free of infection until then (which given her track record would be a miracle).