Yakety-Yak

One day Violet was in the bathroom and she said, "Mama, I need some privacy please." So I walked out of the bathroom and shut the door. Nate and I were sitting at the table and we kept hearing Violet say, "Darn it, darn it, darn it" (it sounded like "down it") and I said, "Violet, don't say that word okay?" Violet replied, "Mama, but you say it all the time. You do." - touche

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.

Reputation

I think I have compromised my reputation of being a consistent blogger - bummer. I can't seem to find the time to sit down and form complete thoughts about life right now. Things are going well but they are just abnormal enough to disrupt the ebb and flow that we are used to. This is the first official week that I have been home without additional support. We are doing pretty well. There is dirty laundry and a sink and counter full of dirty dishes, but when isn't that the case?

I will highlight a few recent happenings with photos (and spare myself the summarizing recap).

Waiting in the cold for the downtown tree lighting

Violet and Daddy watching the entertainment

The Circle before the lighting

After

Anara loves hats

Our little deer

Interesting cupholder

Finally a grownup

We hosted our 1st Thanksgiving meal yesterday and I feel that I have finally transitioned into adulthood. Actually, it probably wasn't official since I didn't prepare the dinner or cook the turkey. Since Anara can't be transported, Nate's family brought Thanksgiving to us. We squeezed around our dining room table in our smallish house and enjoyed a feast together while Anara sang and talked from the crib right next to the table. The girls really enjoyed the company and Anara loved being entertained by grandparents, aunts, and uncles.

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

Noble close-up

Vi stole time with the Bionicles while Guy was distracted with Nintendo

Anara at the center of festivities

Sorry Grandma S.

My grandma told me that with all the help we have had there is really no excuse not to post more to the blog. She is partially correct. I should have more time to blog, but I have been preoccupying myself with other tasks like: sorting and filing the bills and paperwork dating back to April (last filed just before we went to get Anara), filling out Anara's final citizenship application, paying bills, making phone calls, and taking care of the neighbor kids - just the normal tasks that await you after you have been gone for a little while.

This morning Aunt Nicole is coming to play with Violet while we take Anara to her orthopedic and urology clinic visits. The limousine (ambulance) is picking us up this morning and bringing us home this afternoon. I will post the appt. outcomes later today.

Below are some pictures summarizing the most recent happenings in our home:

"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!!

Busy, Busy, Busy

Anara watching TV from the coffee table

So far this week I have been bustling about cleaning, unpacking, and reorganizing. The downstairs is almost spotless (for a few minutes) and most of the clutter has been relocated to the upstairs (save that for later). I am also trying to complete the last portion of Anara's immigration paperwork. Hopefully she will be a US citizen by the new year.

Anara is doing well and we are very thankful that there have been no snafus or complications with her home care. Anara is usually happy and shows no signs of infection. She is still on antibiotics since she has pins and tubes. We have been relying heavily on the TV and a borrowed DVD player to entertain her because it is difficult to sit by her and play all day. Anara is eating very little solid food. She is getting almost all her calories from formula and ends up getting some through her tube most feedings. I am hoping that once she can sit in a high chair again we won't have to depend so heavily on her feeding tube. I am thankful that we did it because I would be pulling my hair out in frustration without it.

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

"There's no place like home. There's no place like home."

I was just up doing some "Anara maintenance" and thought I would post while she finishes her bottle. We came home Friday around noon. Anara was smiley during the ambulance ride and has been pretty happy at home. She gets a little frustrated sometimes but seems content for the most part. She has been getting lots of attention, reading books, playing with toys, and watching DVD's. She is confined to her back in a crib but she still does lots of moving - see for yourself.

I will try to post more details tomorrow.

Tomorrow tomorrow, I love you tomorrow

We are all set to be discharged between 11:00 and 12:30 tomorrow. Of course we know that there is always the possibility for delay but we are praying for no surprises and for Anara to be healthy and able to be cared for at home.

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??

Wires and tubes and metal! Oh my!

I am trying to use today to get things prepared and all my ducks in a row to go home. We will probably be here a few more days but I want to make sure I am totally ready. I know the G-tube will be a piece of cake after a while, but I still don't get feeding calculations and such. I have been annoying nurses, doctors and home care people trying to get all medications, tubes, and schedules figured out - it feels like a lot of stuff to keep track of and I am very thankful it's mostly temporary.

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.

Surgery Successful

Amanda is too wiped out to post, so I'm covering for her tonight. This is just a quick update to say that Anara's surgery today to install, er, insert (what's the right term?) a feeding tube (G tube) was successful. The actual procedure was as quick as we were told it would be, but it was a long afternoon, nevertheless. Amanda helped give Anara her first feeding through the tube, which was an ounce of formula. She's been a little overwhelmed today at the thought of bringing Anara home and doing all of these things for her here, but we both know that we can stay at the hospital as long as we need to, and that we'll have plenty of support and help once we do come home.

Thanks again, everyone, for your prayers. The doctors and nurses all continue to say that Anara looks great.

Just eat already

Well, today is the day. Anara is scheduled for a PEG tube placement at 12:30. I kept telling her that she needed to eat or else and I guess now we will experience the "or else". I know that it is minimally invasive and that the surgical "insult" is very minor. However, it is one more round of anesthesiology and obviously there are always risks. Last night I couldn't sleep because I was worried that maybe it wasn't necessary, maybe I was duped into making a bad decision, and what if Anara doesn't do as well as we hope. This morning I am a little more rational and feel that it is indeed the best decision at this point and that God is still sovereign. It kind of feels like one more thing when we already have 4 tubes to contend with, but it might actually end up alleviating some of our home care burden.

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.

Gastronomical

Today the dietitian told us that Anara is not getting adequate nutrition by mouth. She has never been super interested in eating and seems pretty indifferent about it right now. We have always struggled to feed her and much to our nutritionist's dismay, have had to be forceful at times. Our goal was always to get her weight up to a level that her doctor was comfortable with for surgery. The suggestion was made to place a gastronomy tube (g-tube, GT, feeding tube) and help supplement her nutrition.

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.

Finally some pictures

Anara holding her PCA button (giving herself a hit of morphine)

Anara holding "Ermie"(wormy) and "boo" (bear)

Really happy about watching a movie up close

Reading a card from the Smith kids

Just a little kiss

Anara's costume

Shocked about something

Her holiday pinafore

Unhappy princess

Still not going to smile