Usually when I post about Ava I like to emphasize the good, minimize the bad. Unfortunately, a missed dose of Effexor XR and the ill-will of the estrogen goddess have me in a funk. I don't feel like sugar coating anything today.Like all kids with Williams Syndrome, Ava has a myriad of health and developmental issues. Here's a tidy little list for you:
- SVAS, or supravalvular aortic stenosis. Always there, lurking, waiting for an inopportune time to send Ava to surgery. Probably responsible for her cold, somewhat blue extremities.
- Spina bifida occulta. Sometimes referred to in our family as "Ava's double butt crack". A bony protrusion from her tail bone, with deep dimpling. You can literally grasp it with your fingers. Feces get stuck in the dimple, and the skin over it actually bleeds. The doctors seem to think it won't cause any problems. Yeah, right.
- Chronic constipation, even with daily laxatives.
- Severe gastroesophageal reflux with aspiration. Daily vomiting and retching. Inability to eat much more than Gerber puffs, stage 2 baby foods, and Pediasure, all in very small amounts.
- Anxiety. I can see it worsening, and it scares me.
- Sensory issues. Ava scratches and digs at any exposed skin. She is a "picker". She loves to jump, shake her head vigorously, and spin things.
- Visuospatial issues. Ava sits, crawls, stands VERY CAREFULLY. She is unable to stack blocks or put toys in a bucket.
- Speech delays. She can say mama, amma, wha-ah-yah, and sometimes dada.
- Gross and fine motor delays. She can toddle a little, but not much. She cannot point or pick up a cheerio with her thumb and index finger. She has adapted though, and can shovel in the Gerber puffs with her other fingers.
11 comments:
I'm having a similar "down" week. I get caught up in what my friend's kids are doing and quickly spiral into depression. I try not to stay there too long but for some reason, this week has been quite difficult. It was interesting to read about Ava being a picker - Connor is too and he also spins, shakes his head, and jumps like crazy. The spinning interferes with his ability to learn how to play with other toys. I hate trying to teach my kid how to play. That seems so unfair. I completely avoid anything wheels, any kind of spinning mechanism, or any little round pieces that he'll just happily spin around the room. The only real winners I've found (that he actually plays with appropriate) are the Leap Frog magnets for the fridge (both the ABCs and the animals). And of course, a piano. Other than that, he's so stimmy it's just plain old hard to be successful.
I hope her eating improves soon. That must be so difficult. I wonder, if she can handle puffs, could she try Kix cereal? Connor loved hearing the crunch and they are very small and puff-like. In the beginning with eating, he also did really well with small pieces of graham cracker because they dissolve with saliva (which he has plenty of). Ok, this comment is getting way too long. Take care, I'll be thinking of you :)
When the vomiting and reflux stop it will all improve, or at least that was Jai's turning point.
Jai's a picker - he's got quite a few scars from this, spinning - yep.
- as for this "double butt crack" Jaiden has something similar... Its more of a double anus but the second hole is up near the tail bone and is little and quite shallow - doctor commented on it when he was 6months old and never again, doesnt cause any probs- just looks strange!
Sigh... Thinking of you guys
xxoo
I love you to pieces. As wonderful as the holidays are, perhaps they are harder on us WS families somehow? A time of reflection? I don't know. I'm marinating in a stew of hormones myself, so I am a bit more crotchety.
I love you. Praying for Ava every day.
Hi Kim, I so wish I could take away that list you have for little Ava. It is not fair! I don't think I completely realized the extent of everything that's going on with her, and I'm sorry for that. I do know one thing though, she has a wonderful and loving Grandma that would give the world to take away any one of those issues. And do you know what, she knows it!! Thinking of you.
It is hard, our Ava's have more in common than just a name! Reading your post I felt like I was reading about my little jewel, who I guess with all of the recent hospital stays just started picking. I know all to well about those funks, so if you need anything or if you need to vent pleae feel free to call...609-602-2943. You are your family will be in my thoughts and prayers.
I do agree with Katie when they outgrow the vomiting it does get easier. You can at least leave the house. :) Noah also has the issues with his tailbone although he does not have a diagnosis he has had an xray and they didn't see anything alarming. He also has many of the same issues. I too try to stay optimistic but it is hard at times. Hang in there. We are all here for you.
Remember some of this stuff will pass, they are phases (like the teeth grinding). For awhile I thought Avery was going to grind hers to the nub, but no longer does it. She will also advance, so quickly that you will probably forget some of these woes. In the meantime, find some serenity my dear, you deserve it.
XOXO
Amy
Boy did you ever say it. Tough is right. (By the way, I missed a dose of my effexor last week and could not figure out why I was so dizzy and sick....then realized I forgot to get my med refilled....NOT good!). I get down all the time and it's so nice to see I'm not alone. And - it does seem so unfair that there are parents out there who don't deserve to care for a flower...yet they have a perfectly healthy baby. It hurts. And-the anxiety is so so hard to watch.
You are such an amazing Gramma!
You're right, it really is so unfair that these little ones have to endure all these things. Ava is in my thoughts and prayers, and so are you!!
Some weeks just are rotten. We can't get past things. We only see the glass half empty. Sometimes we just need to wait to see the good things. And they are there - I know because I just read your gratitude post first and then this one (backwards). Thinking of you ~
You are an awesome Gramma!! There is a light at the end of the tunnel. Not for all of it, but that is WS i guess... it gets easier though. It isn't fair for these beautiful little kids. I often stop and wonder why.
There is a LOT to be thankful for. I bet writing all that down helped you feel better.
Hope you and your family have a wonderful Thanksgiving..Enjoy your pie :)
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