Not much to talk about with her appts. today. I thought we'd get a lot of info during our SB clinic since Autumn is almost a year (5 days left). Well, her SB dr. was not even there and we saw his new partner. So, we talked about her constipation issues. They are going to try adding more water to her diet to hopefully get things moving for her. If that does not work they went ahead and wrote me 2 prescriptions. One is for Senna, a medicine to help her with her bowel movements and then another for enemas. Most SB kids get on a bowel program when it's time to potty train where they are given enemas at the same time each day so they can have planned bowel movements and be able to wear underwear like their peers. So, we are going to try and see what is going to work for Autumn since every SB child is different. They are not ready for her to try a stander because they feel she needs more trunk and head control. My PT wants to start her on one soon so we may just go ahead and see if she can do it or not. If not, when Autumn goes back to SB clinic at 18 months they will have a stander for her. That pretty much sums up that appt. She did have to get blood taken but my super star baby did not even cry.
So, we loaded her up, got lunch, and went back to my brother's house for about an hour and then left again for our neurosurgery appt. That appt was literally 5 mins long. The dr. walked in said her MRI looked fine, measured her head, asked a few questions, and then felt her shunt and fontonelle. I asked how her Chiari looked on the MRI and he said it looks like the decompression did open up some space for her fluid to flow and things looked good. Then he said we would not need to see him again for a year and we will get a CT scan in a year. I guess though short visits are good ones because it means everything is all good. I just hate that we travel 6 hours one way and take up 3 days time for appts. that could really be done over the phone. ;) I guess we do what we have to do though for our little princess.
My brother and I worked on Autumn's 1st year video and it looks really good so far. I also picked up Autumn's birthday dress and it is ADORABLE!!! I can't wait to be able to post pictures. Autumn has been doing great again with her stats in the day and night so next week I may have to move her settings down a little and see what a little push will do. ;) I did take some pictures in her birthday outfit today and would unhook her vent from her trach because I wanted pictures without tubes and she did not desat one time....she was even vent free for a couple of minutes so that made me happy. OH....I forgot Autumn rolled from her back to her belly for the first time this morning!! Every new little step is a rejoice party for us...I was proud of her. Well, we head home in the morning and I will get a 2 week break and then on the road again. *sigh*
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