The nasty respiratory season has begun and poor Laynie is feeling it. She has been so sick..... a cold, cough, low oxygen, fever, vomitting, and diarrhea. She had a chest x-ray yesterday and there was no pneumonia yet... Horray!!!! If she still has a fever tomorrow then her doctor is still going to treat her for pneumonia because she turns so fast and is such a high risk. There is one good thing about having a trach and a vent and oxygen at home..... it means she gets to stay home and out of the hospital:) She is usually on 0.5 liters of oxygen and last night she was on 5 liters and was still having a hard time keep her stats in the 90's. She sure knows how to make her parents paranoid!!! It was a really rough night, but today she seems to be doing much better. Her oxygen is back down to 1 liter and her fever is much better, which is a great sign. I am sooooooo not looking forward to this sick season!!! Bring on the cracked knuckles because hand washing time is about to get crazy in this house!!!
She got a walker from her occupational therapist on Tuesday. She does pretty well with it. She can walk anywhere, but she can't turn. I am anxious to get her to a large area with hard floors and let her cruise around. I kind of like the walker and sort of hate it at the same time. I have a hard time with devices/machines that look too much like "special needs". Sometimes it just makes your heart sting when you see your own child using them.
I was looking back at some old medical records and some info and pamphlets on CHARGE syndrome the other day. I never remember reading the information. I probably just glanced at it and was too overwhelmed to read it at that time, and then I forgot about it. It made me surprisingly sad reading the medical documents from October 2010. I am very at peace with Laynie's diagnosis and it has been a long time since I have been sad about about, but every once in awhile it creeps up on me. I know what happened in October 2010, but reading it in medical terms is just different. In a pamphlet I read, "CHARGE is medically and developmentally one of the most complex conditions known. Children with CHARGE syndrome are also likely to be amoungst the most truly 'multi sensory impaired' people you will ever meet, having difficulties not just with vision and hearing but also with the senses that percieve balance, touch, temperature, pain, pressure, and smell."
Sometimes I forget how challenging of a life my sweet girl was given, because I see her as perfect and normal. She has so many challenges and she is such a strong fighter. For being so sick she still has been a sweetheart. She is so incredible. Feel better Laynie!
2 comments:
I hope she gets better soon. She looks so cute with her walker and that is SO awesome that she is getting so close to walking all on her own. Mason was looking out the window when the therapist came and he asked me what she had and I told him that Laynie was getting a walker and that she was close to walking on her own. He looked at Brynlee and in a really excited voice said "Bryn Laynie is getting a walker she can almost walk YEAH!!!" I thought i was so cute. We love little Laynie.
Carter was just hospitalized thanks to this wonderful time of year. That is so convenient you have oxygen and monitors to know how she's doing. I just listen to him while he sleeps and get super paranoid! I really have no idea what his oxygen levels are until I take him in. I have to rely on gut instinct and watch for retractions. Not fun! I know you understand. I hope both of our kiddos can stay healthy this winter. Isn't being a mom the hardest, yet most fulfilling job in the world?
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