Survey Says...

So we finally got all of Anna's test results back. They have come in at different times but today I got the last of them so I wanted to post them all at once instead of one by one. The EEG was normal, no evidence of seizures. The MRI showed a cyst in her right temporal lobe. The cyst is most likely nothing to worry about. They will do another MRI in 6 months to follow up. Best case scenario (which we hope and know will be true) is that the cyst will either stay the same size or shrink and disappear. Worst case scenario, which I will not allow to happen (as if I have control) will be shunt placement if the cyst grows and causes an increase in intracranial pressure. Her genetic test results came back today. They are all - get this - NORMAL!! It has been a long time since anyone has referred to Anna as "normal." I am so excited because this means what we see is what we get. As good or bad as it is now is as bad as it will ever be. Anna has made such progress over the past few months and so I am now able to feel safe letting myself believe that my child will be o.k. She will never be a star athlete but who cares. I am thankful she is back to just being Anna instead of some mysterious diagnosis. It is so funny how I can be undone by the things I am most unsure of. I can deal with anything that comes my way but the fear of the unknown is so hard for me to deal with. I guess this may mean I need to work on one certain word a bit, that word is faith. I need to be better at believing that God hears my prayers and answers them even when I am uncertain of it. So I am happy and smiling and carefree for today, and hopefully for many days to come...

Just For Fun

This sign was at the beach and I found it quite funny.

Bad Boys, Bad Boys, Whatcha Gonna Do...

I finally have a few minutes to post. I swear the days are getting shorter, I seem to have less and less time to do what I need and want to do. So Anna and I headed off to Cook's on Thursday morning. She slept the whole way there and so I thought it was going to be a good day. Um- not so much. We got there and got registered and to our room relatively easily. The staff was all quite friendly and the accommodations could not have been better. I have no complaints as far as that goes. My dear friend Amy came to visit and brought me lunch and it was so good to see her! Anyway, about 1:00 they came and got us and took us to get Anna wired up for her EEG. This was the most horrifying experience I have had with Anna yet to date and I hope to never repeat it. I had to literally hold her down for 45 minutes with her thrashing and kicking and screaming and crying while they mark her head and then apply glue and metal electrodes and finish it off by drying the glue with an air gun. It was horrible. Then they attach the 25 wires to a box which we had to carry everywhere with us. I use the term "everywhere" quite loosely because we could not leave our room. There was a ceiling mounted camera in the room which followed us around the room to record Anna's behavior so if she had abnormal activity in the brain waves they could see how she was acting at the time. Needless to say 24 hours of that was enough for us. We did not sleep much at all. I know some kids have to stay 2 or 3 days- I can't even imagine. I basically held her most of the time because she couldn't crawl around or anything. We watched more Baby Einstein than I ever care to watch again. That hell finally finished and then they had to rip the glued on electrodes off of her head. That was great fun also. It is days later and we are still picking glue out of what little hair she has. Then it was time for the MRI. They tried giving her sedation rectally but it was ineffective on her and so she ended up getting general anesthesia. I watch adults get intubated day after day at work but it is such a different ballgame when it is your own baby. So they intubated her, I gave her a kiss and told her I loved her and then I had to leave her. I went back to our room and waited. She finally came back about 2 1/2 hours later. They brought her up in a wagon and she looked so cute lying there in the wagon all cuddled up with a pillow- she was still quite sleepy. Then we met with the dietitian who changed our regimen up again in hopes for more weight gain as Anna is still classified as failure to thrive. We are back to 1/2 Alimentum & 1/2 Goodstart with the addition of Duocal which will boost the calories more than the Polycose did. It is also more concentrated so it is easier to mix. The dietitian was very nice. She is actually friends with my friend Kathleen so I feel I can really trust her. Oh, I forgot- on the first day when the nurse practitioner for the neurologist came to see Anna she said Anna has 2 horrible ear infections so it is back to another round of antibiotics. That should be great since we are already battling thrush. I swear it just never ends. Anyway, we finally got out of there about 5 PM on Friday and headed home right in time for 5 o' clock Ft Worth traffic. I was up most of the night Friday night with Anna and then worked all day yesterday. Kenneth let me sleep in today and it was so nice, and so needed. I feel human again. I am supposed to call on Thursday to get the results of the EEG & MRI and I hope the FISH labs are back by then also. Anna has been a trooper once again. She is crawling better and better each day. Carly has been great also. She cracked me up last weekend. We went to the grocery store and were leaving when I got pulled over for speeding (imagine that). I begin to pull of the road and Carly starts screaming at the top of her lungs. She screams over and over, "I don't want you to get a ticket. I don't want you to go to jail. I don't want you to get a ticket. I don't want you to go to jail..." I roll my window down as the officer approaches my car. Carly is still screaming and as she sees the officer she raises it a few decibels. He is looking at us like "What the hell?" I said, "Um, she doesn't really like police officers so much." I;m sure he is thinking at this point- what have you done that she is so afraid and that she thinks you will go to jail. I explained that she is afraid of her own shadow. I guess she has seen too many episodes of Cops or something. So she continues screaming and the officer looks at my license and insurance and asks me to please slow down and lets us go. I am sure he was like- I'm not going to give this lady a ticket, I'll have to listen to that kid scream even louder. Thanks officer!!! Well, although I did not teach Carly this behavior I'm thinking it might be reward worthy- maybe it will work the next time I get pulled over, too. (If there is a next time, wink, wink) Kenneth went back on duty Friday. The ortho said his finger is still broken but released him anyway. He said it could take a long time to heal. He was glad to go back and I am glad to have our crazy routine back. It was weird having him home all of the time. So here we are on Sunday and finally relaxing. I am off until Tuesday and plan on chillin' until then...

To Florida and Back

We are back from our Florida trip. We went with my parents, my sister and her kids, and my aunt to Destin, Fl. It was fun but I am glad to be back home. There is just nothing that compares to my own bed. The kids were fairly well behaved and I think they had a great time also. Carly did not like the ocean. She was terrified although she did get in the water with her Nana one time. The kid is so anxious about everything. There were a bunch of jellyfish though so I guess maybe she was the smartest one of all of us. She did spend a great deal of time in the pool though and has learned to swim quite well with floaties which is a huge thing for her. Just a month or 2 ago she was terrified to go near a pool and now she is swimming and wanting to take swimming lessons. I am proud of her. Our trip had a rocky start when we got the airport early Monday morning and realized the diaper bag was at home on the kitchen counter. I had luckily packed duplicates of most things in the bag except for Anna's medicine. Fortunately my sister was able to get her some more medicine and so that worked itself out. We mostly just chilled out by the pool. Anna did a little swimming, too. She also prefers the pool over the ocean as she does not yet understand not to rub the sand and salt water in her eyes. She is crawling all over the place now and wants so badly to be one of the big kids. GahGoo (Carly's rabbit who is nearly as old as she is and is nasty looking and falling apart but who she loves more than life itself) fell 15 stories from our balcony to the balcony of a 3rd floor condo. Carly was out on the balcony with my mom when all of the sudden I heard this horrific scream followed by "GahGoo fell and I can't go on without him!!!" So we tracked him to the 3rd floor condo and luckily those nice folks were there and retrieved GahGoo from the balcony. GahGoo was luckily still alive and intact (as much as he ever is) and is banned from balconies from here on out. I was putting sunscreen on one day (lots of it) and Carly asked why she doesn't need as much sunscreen as I do. I told her that I burn but she just turns brown. She later tells my sister that she doesn't need much sunscreen because she doesn't turn red, she "just turns black." One night at dinner our waitress said she was going to the bar to get Kenneth's beer and she would be right back. Carly asked "Mommy, why is she going to the barn?" We had our usual eating issues with her but to my total amazement she ate calamari. For those of you who are not familiar with calamari- it is squid. Yep, my chicken nugget only eater ate squid and wanted more when it was all gone. I could not believe she stepped out of her box. We also went on a dolphin cruise and saw a few dolphins swimming alongside ships. They are such beautiful creatures and seem so carefree. Sometimes I think I wouldn't mind being a dolphin for a day or so. Anna was so happy to be home yesterday. She ate like champ and slept all night- neither of which did she do on the trip. She is teething and the poor girl looks like she will probably get at least 4 teeth all at the same time. Her EEG and MRI will be on Thursday and Friday- I hope it all goes well. Kenneth goes back to the ortho on Tuesday and hopefully he will be released then to go back to work. He is going nuts and so am I. Anyway, it is back to our normal routine or lack thereof, what fun...

Party Girl

Not much has happened here since the last post. I welcome the boring times, I seldom have those in my life. I have been working quite a bit and Kenneth is still off with his injury. His next appointment is on the 12th and hopefully he will be back on shift on the 15th. He is going crazy being off for so long and is in turn making me crazy. He paces around the house a lot- as if there isn't already enough constant motion in this place. I feel sorry for him though, he feels fine but just can't do anything. Oh well, this to shall pass. We leave soon for a week in Florida and I can't wait. Carly has already packed her bags. Keep in mind we are going for about a week and she packed one backpack with 1 pair of pants, 1 shirt, 1 jacket, and her ballet clothes. She is funny- I told her I would help her pack tomorrow but she sincerely believes she has packed enough for the trip. I guess she forgot we are going to the beach and she might need a bathing suit and a few other things. I applaud her efforts to try and do things herself though. She has finally conquered her fear of the swimming pool. She has been so afraid of drowning all summer that she has not been able to enjoy swimming. We put Anna in the pool and Carly then decided she did not want to be shown up by an 8 month old so she quickly got in. Then we had to drag her out because it was so much fun for her. Anna is doing well also. She is starting to crawl. She looks drunk but we are happy that she is trying, regardless of how she looks. She is so proud of herself and mostly crawls to get to the cat. Yes, I gave in. I let one cat back in the house. I just keep telling myself it is good therapy for Anna because I had sworn I would never have another cat in the house. Never say never- you'll eat your words and they taste like crap!! Anna's video EEG, MRI, and nutrition consult will be on August 14-15th. we have to stay overnight at Cook's. Anna & I will likely go crazy from being cooped up together for 24 hours in one room. It must be done though so we will survive it. Anna has decided it is fun to get up and play all night and not allow anyone to sleep. This coupled with her 2 15 minute naps a day = complete exhaustion for Kenneth and I. I must go to bed before the party starts again, I wouldn't want to sleep through it...