Happy Birthday, Avery!
I can't believe that Avery will be two this weekend. She has changed so much in the past six months (since surgery). To start, her weight has almost doubled. She now weighs 30 pounds! She has gotten so much stronger and is so happy. Which, in turn, makes us that much happier. She loves to bat at the toys in her play gym and even hit one across the room the other day.
I think this will be a very fun summer for our family.
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Another month has gone by. Some days seem to take forever and yet here we are in March. First of all, thank you to everyone who attended the fundraiser in Euclid. We had an AMAZING turnout and raised close to $5,000. Our family and friends there have been a huge support to us and we thank you all. We are very blessed to belong to such a loving and generous community.
Avery is doing great. She weighs about 23 pounds - up 7 pounds since her surgery. She is getting so big. This week she decided to throw us another curve ball. After having one or two seizures over the last three weeks, she suddenly started up again and this time she holds her breath. After giving her teachers a heart attack, we were able to figure out that it was just a new (for us) variation of a seizure and deal accordingly. We're hoping that the medication adjustment will help with these. It seems like as soon as we adjust to something, it changes. Guess that will be the way our life goes from now on.
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It's so fun to have a smiley, happy little girl again! Avery is doing great. She has even graduated to a forward-facing, big-girl car seat (though we will still carry the infant seat with us for trips to Target or the grocery story and for when we go out to eat). And she is getting heavy! At last check she was at 21.5 lbs. I can't wait for everyone to see her when we are up in Euclid next weekend.
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December was crazy and January is starting to look that way, too. This month Avery has doctor appointments with her surgeon, pediatrician, cardiologist, ENT, and neurologist with GI coming up in February. I don't even want to think of the time that will be wasted in waiting rooms!
Avery is doing great since her surgery. She has gained more than 2.5 pounds in just over three weeks. This may not seem like a lot to you or me, but she has increased her weight by more than 15 percent. That's a lot of growing in three weeks! We continue to struggle through normal 18-month-old battles - teeth, colds, etc. - but now that we know she is getting the nutrition she needs it takes a great weight off of our shoulders.
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In less than a week, Avery has her surgery to get a g-tube for feeding, and the Nissen procedure to prevent her from throwing up due to her reflux. It can't come soon enough. Between a head cold that hit us all over Thanksgiving and Avery's two teeth coming in painfully slow, our poor babe has lost almost 3/4 of a pound in the last two weeks. Here's hoping that after a few days in the hospital, Avery will be eating like a champ and we'll be able to enjoy our traditional Christmas celebrations. But more importantly, here's praying that Avery makes it through surgery without any problems and that this is the solution to many of the issues we have been dealing with. Say a prayer for us next week.
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Last night Avery and I met with Gwen and Danika. Eighteen years ago, Danika was born with congenital CMV. After four weeks in the NICU the doctors sent her home with a 30 percent chance of survival. They told her mom Gwen, that if she did live, she probably would never walk or talk and would be severely disabled. Danika just graduated from high school. She is a beautiful, poised young woman and is even a pageant queen. This summer Danika became the first-ever Miss Minnesota You Can Do It, a pageant for young women with special needs and challenges. Last night was a wonderful reminder that sometimes the doctors just don't know. And even though Avery may never walk across the stage in high heels, there's a lot of possibilities between where we are now and where she may end up. Thanks, Gwen and Danika!
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Yesterday afternoon Avery had her upper GI tests and barium study. It was actually kind of neat to watch. Avery drank a white liquid (barium), and through an X-ray machine we saw how her tongue and throat work when she swallows. The doctors then watched the barium go all the way down to her stomach. From these tests, we learned that Avery aspirates slightly every times she swallows. This means that she breathes in some of the liquid each time she swallows, kind of like when you swallow down the wrong pipe. Eventually Avery coughs to clear her throat. Unfortunately, between the coughing and the acid reflux that was also diagnosed at this appointment, this sometimes leads to her throwing up everything she just ate. This is the reason why she won't drink great quantities and why she is behind in weight. Finally, an answer!
The tests confirmed that Avery needs a GI tube. The sooner, the better. We'll still be able to feed her baby food through her mouth, but liquids will need to go in through the tube until she learns to swallow correctly. We aren't looking forward to putting her through surgery, but we are hoping that the tube will make things easier on all of us. Avery will be able to gain weight and get stronger, and we won't have to guess each time whether she's going to throw up her bottle or if she'll keep her medicine down.
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We thought we were doing so well. We've almost always struggled getting Avery to gain weight. Then, in July, she was drinking and eating like a champ. We figured we had her up a pound in a month. We were looking forward to her next doctor's appointment to show how good she was doing. Then it all went downhill. After a few days of her refusing bottles, we took her to the doctor thinking maybe she had an ear infection. She didn't - that would have been too easy. But she had thrush, a painful infection in the mouth. So we fought the thrush for a month. During this time, we were having a great day if we could get Avery to drink more than 4-5 ounces over the entire day. Then we finally got the thrush to go away and the cold hit. Nothing like a congested little nose to stop any progress! So once again we're hoping things are on an upswing. Avery's teacher is thrilled because Avery has been drinking 3 ounces in a sitting. Yesterday she drank four ounces.. Here's hoping that we can plateau at the top, and not the bottom, for a while!
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