Ok, so it has now been a week since our arrival home from the hospital. So far things have been going well. Gabby appears to be more alert after her surgery and is not sleeping as much. We are hoping that within six weeks, the shunt will have had long enough to drain the excess fluid that was causing the pressure. Perhaps Gabby will even become more alert and more active.
Gabby met her very first friend who has the same condition as her over the weekend. His name is Andrew and he lives with his loving family in another state. They travel to our area often so we are hoping for more visits. Her friend was trying so hard to get Gabby's attention, but she was just way too sleepy and didn't respond that much.
Gabby saw her specialist this week at Children's and it looks as if the valium she is on for spasms has caused all her muscle tone to go away. In one way it is good because tight muscles in kids causes serious issues with growth and development. If they have too much tone, then they are at risk for dislocations along with other numerous growth issues. The bad news is that the valium has done its job too well and she no longer has muscle tone in her tongue or other areas of her body. Due to losing the muscle tone in her tongue she is having difficulty eating and now has a feed tube in order to get her nutrition. She will be seeing a feeding specialist and an Occupation Therapist weekly to help try to strengthen her muscles.
I am just so grateful that we are back home and getting back into the groove of being at home. There's no place like home <3
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