We had our last cardiology appointment on August 14th. We were due for an echo to see how the digoxin was helping the heart squeeze, but we just could not get Lucy to settle down. She was slightly over tired and every time it seemed she was relaxing, the minute the ultra sound probe touched her, it was complete hysterics. The tech was able to get enough pictures for Dr. Husayni to give us a three week break. Good thing about a three week break is no hospital. Bad thing about a three week break is no major changes.
Mike and I finally had a night out. We were able to celebrate a good friends marriage. It's nerve wrecking until you leave the house. Then it's almost relaxing, just to have a few hours to kick back and have fun. Thanks grandma and grandpa for letting us get out!
We are still working on taking the bottle but have not made as much progress as I would have liked. I am reluctantly realizing that Lucy may not take a bottle and will go straight to puree foods. This can happen with heart kids but I was hoping we would catch on to the bottle in hopes of getting rid of the NG tube. The feeding through the tube is actually great, it's the constant fear she will pull it out and I will need to put it back in at home by myself that's the problem. But the likelihood is we will have the tube until she can eat all her calories in puree food. We have gone up to 25 ML an hour and are going to test out bolus feeds. I spoke with Angela and she provided a schedule that will slowly allow us to test the waters. We had our first try on Wednesday and Lucy handled it well. She was unattached from the feed machine for two hours. I wanted to run around the house with her!!! It will be so amazing when she will be tube free. I'll probably cry. TYPICAL! It's a ways away, but something that we can barely wait for.
Our next change is we will be starting therapy at home. Physical therapy and speech will come to the house and work with Lucy. It's possible with their help we will get to the bottle. But we'll just have to wait and see. We started tummy time this week as well. She can make it about two minutes before getting irritated. Our goal is four minutes twice. Lucy has very good head control, we hope our PT is impressed. We are also very close to sitting. We are so proud of her progress, she is such a trouper. In reading information online about milestones we are about one to two months behind. Not bad for being sedated the first two months of your life!!!! I think by a year we will be all caught up!
We love to watch her personality develop. Her favorite thing right now is the alphabets. She could be on the verge of tears and you sing the alphabet and she is all smiles. Her least favorite thing is getting her cheek patches changed.
We are so grateful that Lucy is stable and making progress. We thank all for the continued prayers for our family. As Lucy is growing we are feeling our condo shrink and shrink. Prayers for direction on selling the condo and buying a new home would be greatly appreciated. We would love for Lucy to finally have her own room!!!!
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