Sunday, February 6, 2011

Cabin fever

We are experiencing some major cabin fever here in our house. Our poor girls have only been out of the house two times during this past month. One of those times was to go to the doctor so I am sure they will not count that as a fun outing. We are still just too scared to take them out in public with all the illnesses going around. A friend of mine has a 24 week preemie that is a little over five months older than the girls and he is currently hospitalized with pneumonia right now. This is why we are really trying to be careful with our pride and joy. I actually got two days off work this week with the snow and Troy was off for three days. We had Tiny K here on Friday and she let me know that she could see huge improvements with understanding their words. She noticed that Jordan likes to talk about colors and Rylee likes her numbers. We will continue to receive services through Tiny K (infant and toddlers) until the girls are 3 and then we will transition to the school system. It is really nice having them come into our house and offer support. We have been a little concerned with Rylee's liquid intake as she seems to have slowed down with her drinking. She will only drink a few ounces a day so we are giving her water and pediasure through her g-tube. She still drinks pediasure rather than milk as she needs all the extra calories she can get. We went against the OT advice and quit putting thickener in her pediasure these past couple days and she did a lot better with it. Now we just need to hope and pray she isn't aspirating the liquid. She gets very upset when we break out the syringe and g-tube extension so I know she would rather drink her liquids. We are still enjoying our life without her trach and it is so much easier around our house. The trach life was not a pleasant experience for us to say the least. We still count our blessings everyday. And of course, also with this age comes the fighting and the boundary-testing, and the tantrums and the whining and the seemingly never-ending need to move and to be entertained. Those are the things that still make me feel exhausted after each and every day. But they are still not what I find truly difficult about our current life with Ry and J.

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