Just hangin' out
Rare that I am on this side of the camera
Pretty girl
Playing with brother
Nothing better
Ava has been doing well from a cardiac standpoint. We went to the cardiology clinic in Dothan for the February appointment. The shunt is continuing to function well and her oxygen levels are satisfactory. We have been to the pediatrician multiple times in the past month for weight checks and for a cold and congestion she's been fighting for several weeks. She is continuing to gain weight slowly and is up to 9 lbs, 12 oz now. So far, the cold has not turned into anything other than cough and congestion.
This past Friday, we went to Birmingham for her March cardiology appointment. Again, she is doing well and she is expected to make it at least until the Summer without needing the full repair. The surgery she already had was just to place a shunt between an artery and her lungs to increase blood flow to her lungs. None of her defects were repaired. The actual repair of the defects will possibly take place in the Summer. Her cardiologist said that if she is continuing to do well when Summer comes, they will weigh the risks and benefits of waiting longer. It may be that they go ahead and do it even if she isn't showing signs of heart failure.
While we were in Birmingham, we also saw an occuloplastic surgeon. We have been told by multiple ophthalmologists since Ava was born that she has a coloboma of her eye lid and that it would require surgery. This surgeon, however, told us that she does not have a coloboma and was emphatic that there was nothing wrong with her eye (even though it doesn't close when she sleeps and looks different to everyone who sees her). I won't go into much detail about this appointment because I don't have anything good to say about this doctor. We will be seeing another ophthalmologist in Birmingham in May to get another opinion on whether her misshapen eye lid is affecting her vision.
We started Early Intervention last week, which provides services and therapies to children up until their third birthdays. Our service coordinator evaluated her and we discussed her need for physical therapy. There are obvious and expected delays, such as not holding her head up and not smiling fully. She also has low muscle tone and her legs want to stay in a frog-like position. All of these things are typical of Down Syndrome. I can't tell you how strange it feels to be on this side of things. I'm so used to being the one providing the services and talking through evaluations and paperwork with parents. You just never know what the Lord has in store for you! I am thankful for all the training He has given me.
Frog legs
She has discovered her tongue
Started rolling onto her side this week!!
In other Burgess news, we have been taking advantage of this Spring weather lately. We are enjoying playing outside and have been to the Montgomery Zoo and to Farm Day at Landmark Park. Jack loves animals and had a blast getting to see them in "real life". I will follow up with a post of those things because there are a ton of pictures.
Playing outside.
Yes, I would like a sip of my own smoothie
I will leave you with a laugh. Benji and I get a big kick out of Ava when she gets mad. She's just so darn cute and she sounds like a little kitten meowing. Jack had an ear-piercing cry, so Ava's just makes us laugh. Her mouth can make the deepest frown when she's starting to cry.
Step 1: Pitiful frown
Step 2: Gain some momentum
Step 3: Cry out like an injured kitten
Until next time,
Krystal
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