I find myself behind yet again. I hardly have time to do anything and then my laptop crashed and had to wait a couple of weeks to get a new one. I am now able to offer Irelyn rice cereal at home once a day. However I can only give her 5 bites once a day. So here we are moving at a snails pace. She really likes it and wants to eat but gets tired easily still.
We have an appointment to have her sleep study done on May 26th at KU, and once that gets done we are going to be starting Irelyn on growth hormone. I have alot of anxiety about this as many of you already know that know me. There are HUGE benefits to the treatment, but it doesn't come without risks. What does in this world? But everything is HUGE when it comes to MY children!! So my being paranoid doesn't help anything. I just pray that we are making the right decision and that she will benefit greatly from it. It involves one shot a night and will continue into adult hood. Studies have shown that it not only helps with growth, but also with overall muscle tone, strength, and IQ. It will make her stronger and have more energy to be able to play and stay awake more during feedings.
She will have a repeat swallow study in June and then hopefully we will have the go ahead to offer more by mouth. I am so ready to be done with this G-tube but I know it has been a blessing. Without she would not be able to eat enough to grow. We are still doing all of our regular therapies and will be starting speech therapy soon as well. Irelyn has made huge progress in regards to her head control. She is definitely getting stronger with that and is able to hold it up on her own with us holding her for about 5 minutes!!!! This is so exciting. She is also cooing quite a bit and rolling from her side to her back. She can't roll from her back to her stomach yet but she is trying. She can also roll from side to her tummy. We just love seeing her make these strides and she is just a beautiful baby. My two other children just adore her. Please look at the new pictures we added.
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Asher has been on the growth hormone since October and it has been AMAZING. I think you will very happy with the results! I know it's hard to give your baby a shot every night, but the benefits are incredible. Hang in there!
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