Wednesday, November 28, 2007
Today Violet was having trouble falling asleep for her nap. I told her that if she would lay down and go to sleep then when she woke up she could watch Mickey and Minnie. She took a very short nap and I brought her downstairs. We were playing and coloring when she asked to watch Mickey Mouse. I told her that she could watch it later when I was able to move Anara to the living room. She quickly replied, "Mama, you said I could watch it after I waked up - you said that Mama." Whoops - she was right, I said that.
Yesterday I was trying to do dishes and Violet kept asking me about an advent treat calendar she had received from a Grandma. I tried to explain it to her and tell her that we had to wait a few more days to start opening the windows but she persisted with her questioning (I am pretty sure that she can sense chocolate in the room). I finally gave her a dumb answer like, "Vi, we have to wait until Jesus is ready to come before we start opening the boxes." She looked at me dumbfounded and said, "But Mama, Jesus is already here." Wow! How could I argue with that? I let her open a box and eat the chocolate.
Yesterday I was trying to get lunch ready and Violet came to me and said, "Mama, Anara just said 'More cracker.'" I told Violet that Anara would have to wait until lunch (I doubt that Anara really said that anyway) and Violet replied, "Tell that to Anara."
Yesterday I took the recycling out to the porch and an old neighbor walked by. I chatted with him for a few minutes since we hadn't seen him in a while. When I came in Violet asked me who I was talking to. I told her that I was talking to Harold. A few hours later we were having lunch and listening to Christmas music. One of the songs said "herald" and Violet got excited and said, "Oh, she just said 'Harold!' Is that what you just talked to?"
Lately I have utilizing what might be a bad mom trick. I have been asking Violet to perform for people with bribes. (I must have inherited this trait because when I was little I got a Nintendo game for trying to water ski just one more time and a waterbed for no cavities when I was 10) The other day I offered her chocolate for reciting something from memory. This morning she said, "Mama, I will say Luke 2 if you give me 2 chocolate chips." Whoops!
"Mama, Anara wants some water down her tube."
We have been Mr. Rogers fans for a while now - it was one of the first shows that we ever let Violet watch. About a month ago, Mr. Rogers put on a mask in one of the episodes. Violet started shaking and wanted us to shut it off immediately. I shut it off and deleted that episode and tried to explain that she never had to watch it again, but Violet hasn't watched him in weeks. Last night I wanted to buy some time with the TV and turned on Mr. Rogers. I explained that he wasn't going to put the mask on again. A few minutes into the show I heard Violet standing over Anara saying this, "Anara, do you like Mr. Rogers? Mr. Rogers is nice. He likes you Anara. He isn't going to put a mask on anymore. He loves you." I thought it was cute and appropriately therapeutic for Violet to reassure herself by encouraging Anara.
Tuesday, November 27, 2007
Anara loves hats
Our little deer
Friday, November 23, 2007
I forgot to post the other day after Anara's MD appt. All our visits went well and everyone thinks she is doing great. The morning after the appt. (Wed) we woke up to Anara's stents disconnected and her Monti tube pulled out of her stoma - someone had busy hands during the night. We called her urologist and ended up taking another ambulance ride to Riley to have things put back together.
Sleep has definitely been the biggest challenge since coming home but we are managing well. It was easier at the hospital when the expectation was no sleep and I was in a constant state of alert. Every other night I was relieved and able to come home and sleep peacefully. Peaceful sleep is not to be had right now because Anara is not able to sleep. She wakes up anywhere from 5 - 11 times during the night and you have to check her because there could be so many different causes (tubes disconnected resulting in wet bed, tubes occluded, gas, spasms, hunger, fear, or nothing). Some nights are better than others and Nate and I try to take turns checking things out. Only two more weeks!
We didn't get any great pictures yesterday, but you get the idea...
Anara helping out with Thanksgiving preparations
Uncle Jon, Aunt Rachel, Cousin Noble, and Violet
Vi stole time with the Bionicles while Guy was distracted with Nintendo
Anara at the center of festivities
Tuesday, November 20, 2007
"I already told you, just put it through my tube."
Grandma and Violet
She might not drink it but at least she is smiling
Kind of like Twister but not quite
Grandma is brave enough to hold Anara
Violet and Doodlebug having a slumber party
Watching Michele's DVD player together
Kendra, I don't have an email for you so maybe this will work ;) I was going to call but it is pretty early and who knows when I will have the opportunity for a phone call this afternoon. I hope Simeon is doing well. I have been thinking about you guys. I will call someone at some point to find out how he is doing. Hope you are well!!
Tuesday, November 13, 2007
I am doing pretty well with the "Anara Maintenance" schedule but at times it would be convenient if I had three arms instead of two. It would be easier to have three arms when using the feeding tube so that I can open her button with two hands and hold the syringe with the third. It would also be easier to have three arms when irrigating her SP tube. It is hard to push in and pull back on the large syringe while holding it in place and clamping the Monti closed, but it isn't impossible. It would also be easier to move her, pick her up, or clean her with a third arm to hold her drain tubes. We really are doing well. My brother, Bryan, has been here to help during the days. It hasn't seemed too overwhelming to be home. It is less stressful without a monitor to make me nervous about respiratory and heart rates. Even the middle of the night maintenance has gone quickly and smoothly.
Violet is doing pretty well. She has a weird rash on her face (around her mouth) and woke up this morning with a "tummy ache". She told me at 5:30am that she had a tummy ache. I thought maybe she didn't really mean it so I helped her back to sleep. When she woke up again she started crying and said, "I don't like this tummy ache" and she has been on the couch since I got her out of bed. Hopefully it doesn't turn out to be anything.Listening to Daddy's leg with a stethoscope and sporting her weird rash goatee
Sunday, November 11, 2007
I will try to post more details tomorrow.
Thursday, November 08, 2007
We have one home health care business for our GI supplies, another company for our GU supplies, and of course the ambulance agency to provide transport to and from the hospital. It will be an interesting next few weeks. I can't wait to get a date for the removal of the hardware and tubes. It will be considered another surgery - Anara will anesthetized and while she is under we will practice catheterizing her through her channel. They will also remove the fixator, the pins, ureteral stents, and the tubes.
Anara hasn't needed any morphine or Valium for a couple days. We have been able to manage her pain with Tylenol with codeine and Ditropan (to manage bladder spasms). She has been eating great since we put in the G-tube. It's very Anara-ish to starve herself into a G-tube and then decide to eat on her own after we take it to the next level. She is still pretty happy. I would be itchy, uncomfortable, and grumpy after laying in the same position for 3 weeks, but she is still fairly entertained. I am hoping that the change in scenery won't make her more frustrated.
I can't think of anything else to post. Is there anything anyone is dying to know??
Tuesday, November 06, 2007
We will have been in the hospital 3 weeks on Thursday and it seems like we checked in forever ago. Some of these families have been here months and others years. Every day I am thankful that we have an end in sight and that we are going home healthy. I can't imagine having to deal with a child with a terminal illness or a dehabilitating condition, but these families are amazing and they make it through.
Okay, time to flush some tubes.
Monday, November 05, 2007
Thanks again, everyone, for your prayers. The doctors and nurses all continue to say that Anara looks great.
Anara has been doing pretty well as far as pain. She hasn't had any morphine in several days and has been able to spread out her Valium and T3. Last night was a little rough. I think she must have been having spasms because she was really uncomfortable and kept rocking herself and crying. We gave her the Tylenol and Valium and after about 45min. she calmed down and went back to sleep. She has been pretty happy this morning even though she has been NPO (Latin for "nothing by mouth") since midnight. She woke up absolutely soaked because three tubes had been disconnected when the doctors rounded earlier (didn't quite get things put back together after their prodding) but she was still happy. I held her awkwardly while the nurse changed the bedding and she seemed to calm down after a minute or so (but her fixator was jabbing me).
I think that is everything for today. I will try and post again after surgery and maybe even put up some pictures. Thanks for your prayers.
Friday, November 02, 2007
At first I was pretty hesitant, but after consulting several medical professionals and weighing the pros and cons, I am much more accepting of this idea. Nate was pretty open to it from the moment I called him and explained the situation. We both have clear memories of mealtime battles and the pressure of getting enough calories in her. A GT would alleviate the pressure on us to feed her, the pressure on her to eat, and the worry that she is not getting the nutrition that she needs to heal. Anara's doctor wants to ensure the success of her major surgery and good nutrition is one of the primary ways to maximize her recuperation. Her surgeon said that a GT placement would be 1/50th of the procedure that she had a couple weeks ago. With everything that her body has been through and all that we are expecting her to do, it seems the only course of action. There are always risks associated and of course she will have to undergo general anesthesia again, but the benefits seem to outweigh the risks.
The nurse practitioner involved in the conversation said that she has seen miraculous results from GT's. She said that some kids with eating aversions develop appropriate eating habits. The dietitian thinks that once Anara experiences adequate calories and her stomach stretches, she might have more hunger sensation and become a better eater. Obviously we would love to see Anara become a competent eater and perhaps this will bring us one step closer to that goal. In the meantime it will provide the nutrition necessary for her to heal quickly and completely.
Thanks for your continued encouragement and prayers.
Thursday, November 01, 2007
Really happy about watching a movie up close
Just a little kiss
Still not going to smile