Autumn's all better. She had 2 sessions of OT this week to make up for the session she missed last week. They are working on her bearing weight on her hands to push herself up to a sit. She seems to have more trunk control than she does head control. Sitting up she can hold herself up with her body but just can not hold her head up on her own. I have a cute pictures of it but right now I'm too lazy to download it. She is also wanting to roll onto her stomach from her side so that is encouraging to see her trying. Her hands have to always be busy playing with toys and she's a wild girl swinging them around. The other day I wa leaning over her and praying over her when she got ahold of the skin right underneath my eye. Man, it hurt and she did not want to let go. Then next day she pucnhed her Nana in the face so she may end up being a mean little girl. ;) It does not help when her brother is teaching her to punch. He's now learned to help me with trach care when no one else is around or willing. He also wants to suction her and does not understand that he's too little so I let him put his finger over the hole that makes the suction so he can still help out. Today I was changing Autumn's diaper and she reached for her foot, pulled off her sock, and put it in her mouth. It was good to see her reaching for her toes (only if she could raise that leg up herself). Also, my new thing is to load up all her equipment in the stroller and then push the stroller to whatever room I'm taking her to and just hold her where she's looking over my shoulder. By doing this she really raises her head up and looks around and is getting more control. I was pretty discouraged about her head control over the weekend since when she was sick we did not work with her and she seemed to take a few steps back but she picked them right back up as soon as she got her strength back so I am feeling better about it now. We got our permanent pulse oximeter machine today that the insurance bought for us since it's cheaper than reanting. Well, I'm not too happy with it and pray it grows on me. The good thing is that it's really small and light and the internal battery will last 16 hours!!! The bad thing is that the volume is either low or high and the high is not loud enough for me to hear while sleeping and it sounds like a soft sounding car horn...it also only beeps twice...waits 10 seconds...beeps..and so on. Without a constant beep I'm not sure it will wake me and I will have to go to Autumn's room on the first beep right away to see where she is rather than waiting a few seconds to see if the beeping will stop before having to go check on her. So, that will make me get even less done during the days she wants to beep all day. :) The sensor for the pulse ox only goes around her toe instead of around her whole foot so it does not like to stay on as well and I hope it does not start burning her big toe...we'll see. I guess if does not work we will just have to go purchase one on our own...I mean is she's going to have it for several years it will be worth getting one we REALLY like and that fits all of our needs. With other pulse ox machines you replace the whole sensor cord each week but with this one you just replace the sticky part that goes on the cord so I hope nothing ever happens to the sensor cord as well--that's the kind insurance wanted. Ugh!!! I hope the beep grows on me and I will get use to hearing it so that I can go back to not having night nurses when James is off...I'm afraid now we are going to have to keep them but we already have all of May and June scheduled without night nursing on James' nights off and if we need more hours we will have to once again train a new nurse. I hate training and getting to know new nurses so please pray that it will all work out. I guess I could just go out and buy a cot to sleep in Autumn's room so I will be sure to hear her. Well, Madison went back to the doctor and her blood pressure is fine....she was just nervous the first time but we still have to check it at home each week. So, that's our week so far.
It's nurse appreciation week so tell a nurse thank you. Even though I hate having them in my home, I am so thankful for them and I'm blessed to finally have a team of nurses I can really trust. It makes me remember my aunt Rhonda this week. She passed away almost 3 years ago and she was always the nurse I counted on and I know if she was still with us today she would not hesitate to be here taking care of Autumn for me. Gosh, I miss her so much and wish she was still here!!! When I was little I remember my aunt Rhonda would bring any shots I needed home with her and both of my parents would have to hold me down while aunt Rhonda gave me the shots. Hmmm...maybe that's where Madison gets it??? It's also teacher appreciation week so don't forget those teachers as well. I don't think they should have them in the same week though since I'm going broke buying everyone gifts. I hope everyone has a great week...we will be back in Dallas next week for more appts. so please keep us in your prayers.
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