I wanted to get a video of Autumn rolling all over the place but once I got the camera out she stopped. Go figure. I did get video of her pushing herself up and playing with brother though. She's getting so big! She's been doing great off the vent lately...about 5-7 hours a day. Also when she took a nap this afternoon I forgot to move her breathrate from 6 to 20 and she did not beep one time. Yea!
We've started giving her enemas daily now to help her out. Everytime we start something new I get another hit of reality about her special needs. I worry she will struggle with her bowel/bladder issues her entire life and will never be "normal" enough to live without it being a huge issue in the future. I just worry about once she's school-aged that she will always be in diapers and have that issue to deal with and getting teased by peers. I know once I get to that point it won't seem as hard or scary or maybe not even a big issue but these are just some things that cross my mind often. Tuesday we will find out the results from all her urology tests and hoping they are all good and cathing will not have to begin.
The training has started with my SIL and she's getting it down so quickly. We are going to test her out after a couple of weeks and leave her alone with Autumn. All we have to left to train on is trach changes. She changed out Autumn's button today and got trained on the vent. She already pretty much knew how to suction and deal with desats from being around us so much. It's a huge burden lifted off my shoulders to know another family member can be left alone with Autumn. Maybe James and I can actually get away for a weekend in the future. ;)
Nursing is going better this week. I just have to leave the room once they get here and not go back in so she will not start crying again. It breaks my heart but she's only up for an hour or 2 before going to bed so I guess I can manage to be away from her for that long each day. ;) We are going to start slowly going from 7 nights a week to 4 nights eventually but first I want to see which nurses I want the most and see who wants to stick with us as well. The nurses are also learning to leave her alone at night so she will not wake up and sleep in...some do better at this than others.
We start therapy sessions this next week and it looks as though we will have 2 sessions every week. PT each week and alternating OT and Speech every other week. So, Autumn's schedule will remain busy like always. One great thing is that the WIC office here can not order Autumn's formula so I can now stop going to those stupid meetings and get her formula through our equipment company again. Thank goodness because it was always a pain to have to get bloodwork from Autumn, go to the hour long meetings, and then pick up the formula when it would come in. Now the company just delivers her formula to our house each month. I get excited over the little things that make my life easier.
In a couple of weeks we have a consultation with a new pediatrician so hopefully that will go well for us and our new pedi will be just as great as our old one was but I doubt it. Okay, I think I've made this post long enough...can you tell I'm bored on a Friday night? I wanted to go bike riding but Madison and I are sharing my bike and she took it out with her friends...I think it's time to take Madison bike shopping so I can get a much needed workout.
1 comment:
Hi, I really enjoyed reading your post. I found you through spina bifida kids. My daughter has SB. We have to cath her every four hours, she has had some feeding delays and she wears special shoes at night to help keep her feet straight. She's on miralax for her bowel issues as well. I was really happy for you that someone in your family learned how to care for your daughter's special needs. I have gained a great deal of comfort in knowing that there is more that one person (me) out there who can care for my daughter. One of our older children has had some major health issues over the past six months and it became necessary for me to teach multiple people how to care for our daughter with SB so that I could turn my attention to our five year old when necessary. It was like a huge weight lifted off of my shoulders just knowing that other people could do what I do. I don't have to deal with a ventilator, but I can only imagine the weight of that responsibility. You are doing a good job. Keep it up!
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