At Home in the Mountains

Tomorrow we are off to Colorado for three weeks of vacation and cooler weather! It has been 100 or over every day here for the past week or two and the lows at night have been 80. It is supposed to cool off to 90 for a high tomorrow. Wouldn't you know it would wait until we leave to do that. I am so thankful for ac. That's all I can say. This week has been crazy busy. Somehow I did not realize this was the week we were leaving and so volunteered to help with a VBS our church is doing at an apartment complex. Also, we had three doctor appointments this week and I am trying to get my paper for my class done so it's been insane. The theme for VBS is Summer Splashdown. They are doing different stories about water from the Bible. Tonight is the last night and then tomorrow is just a party with games and hotdogs and stuff. We won't be there for that. I skipped last night and will skip tonight again to work on my paper. I feel bad but Aaron keeps telling me that is what I shou...

The ENT appt. was good. I think we will cancel the surgery with Children's Plano . We liked this doc much better. He has worked with a couple of other kids that have arthrogryposis so that was cool. He said that sometimes arthrogryposis can affect the synovial joints in the ear bones causing hearing loss. He is not saying that is what is going on as it does appear that fluid is in the ears but wanted us to be aware that that could be a possible scenario even after the fluid is cleared. He gave us some nasanex spray and says he has had success on that clearing the fluid out of a few kids ears but not to expect it to work. Since we are going on vacation anyway we said we'd go ahead and try it and then see where we were at when we got back. If that doesn't work, he will do tubes. He said hearing is not crucial to speech development until 6 mo. so waiting a bit is not going to hurt her in that respect. So if fluid is still on the ears after using the nasanex we will do tubes w...

We had to get up at 5:30 in order to get ready and get to our appointment in time since it was all the way in Ft. Worth. It was a 8. Wait was not very long. We were the only ones there. Dr. Honeycut is a man. His first name was Johnnie so we thought he might be a woman but we were wrong. Anyway, seems to be an excellent doctor. He took time to explain everything to us. Showed us the MRI scan and explained it to us. He thinks that the cord looks tethered because it is down too low and it is stretched straight thru the spinal column instead of curving with the spinal column. Also said that he spine alignment is slightly abnormal which could be cause be her arthrogryposis condition. He did not see any boney abnormalities and Scottish Rite indicated when they did the xrays that they did not see any either but we may have them look again or at least double check with Dr. Herring that they looked at her whole spine and that is the case for everything, not just the neck. So he told us about ...

Well we got back a couple of hours ago from PT/OT. We have an new OT now named Coraley because our OT Tiffany had her baby yesterday. I really like Tiffany and will miss her. Coraley seems nice but I am reserving judgment about whether she is a good OT or not. Our challenge right now---well okay one of our challenges---is tummy time. Maddy is having a really hard time getting on her tummy and lifting her head. I don't think I've written much about her neck but she has torticollis which is a greek word (I think) that means "twisted neck". So as I've mentioned she has trouble turning her head to one side. When she's on her back we've worked enough that she is really good now about turning her head to either side. Somehow though, that doens't translate to the tummy. She hates being on her tummy in the first place and really hates having her head turned to the left on her tummy. In the last couple of days Aaron and I finally came up with the idea of makin...

Look who finally came to visit! Uncle Ethan got to meet Maddy this weekend. About time!! At the fireworks in Lewisville. Unbeknownst to us, there were aunts in the grass and Maddy got three ant bites on her had. They are all pussy and gross looking. She never fussed so I didn't know it happened until this morning at church. This is the 4th of July dessert I concocted for our cookout. Very patriotic looking and pretty tasty too! Forth worth at night. Maddy playing with the pony we bought her in San Antonio. She is mesmerized by this toy. She likes punching at it with her hand and making it fall over. Maddy with another toy she loves. We had the most fun 4th of July weekend I can remember in several years. First of all Jessica came to visit for the weekend so that automatically made it awesome! She arrived Thursday evening and we stayed up way too late talking. The next day we had donuts for breakfast, went to Maddy's PT appointment and then took Jessica to DBU for a tour (0f cou...