Thursday, January 31, 2008
The girls are making a little art.
I wanted to capture the tongue out "concentrating" face but I missed.
Wednesday, January 30, 2008
I will start this post with our lows so that I can end with the highs.
*We are still having trouble with Anara's catheterizable channel. This might mean another surgery and more hospital time. Our insurance benefits changed for this year and her care will cost more than last year. She is supposed to have a sleep study to determine whether she has apnea, and this study alone would cost us $1,000.00. Thankfully our max. out of pocket is not a terrible amount, but we will pay double what we paid in 2007. I am waiting on a call from her developmental peds. MD to figure out whether the sleep study and swallow study are necessary. I will find out what the course of action will be for her channel on Thursday.
*I mentioned in the last post that there is a baby in Bishkek waiting to be adopted. I forwarded the baby's picture and medical information to Anara's MD. He called Saturday morning with some disappointing news. He said that this baby has a more serious form of exstrophy called "Cloacal Exstrophy". This baby needs a bowel surgery with colostomy as well as Anara's bladder surgery. If this baby had been born here, her chances of a full life would be great, but time and resources are not on her side. Her medical needs would best be met by an adoptive family's insurance. (The cost would be too great to be absorbed by a hospital or organization.) She would be more "adoptable" having had the surgical correction. Anara's MD said that most of these babies die of malnutrition because their bowel (outside their body) cannot adequately absorb. Before 1970, there is no record of a child born with this malformation living past 1 month. The fact that this baby is still alive without intensive medical intervention means that she is pretty determined to survive.
I have been emotional about this baby's situation. I realize that children all over the world die daily of things that could be prevented. However, I have a special place in my heart for this baby in the same hospital that Anara stayed at with potentially the same MD caring for her. Nate and I have thought of what it would be like for us to adopt her and we just aren't sure of our capability right now. It is difficult to know that you might be able to help and not be sure whether or not you should. Factors to consider: Anara might need another surgery, Anara is not fully healed, we still owe money for Anara's adoption, we don't have financial resources to support another $30,000 or more adoption, the baby might not live long enough to complete the adoption process, and can our family sustain the emotional blow of adopting an even more critical child. I do not have the emotional fortitude and infinite patience that I wish that I had. But, is not pursuing adoption condemning that child to die? Is it up to us (Mom, I already know your answer)? I have been wrestling with this since last Friday. If tomorrow someone handed us this child then the answer would be more simple, but the traveling with a potentially critical child (with my lack of medical knowledge) and the difficulty of the adoption process is quite overwhelming.
I guess I am not looking for anyone to answer my question, but I did feel a need to debrief. I know that God loves this child and will provide answers to my questions. I am thankful that I do not have to make these decisions on my own and that I am not the head of our household.
I am not allowed to post a picture of her but she is a beautiful little baby. You would never know by looking at her sweet little face that she suffers.
*The girls and I have colds. Yes, I was just sick 9 days ago with a cold. I am not a sick person and I have no idea why my immune system decided to give out again. Usually it is related to my lack of nutrition/vitamins and an increase in my sugar consumption, but not this time.
*Our washer is broken and we are out of several clothing items. Last night Nate said that Violet will probably be wearing her halloween sheep costume for pajamas if the part for the washer doesn't arrive soon. I know, not the end of the world, just an annoyance.
*Anara has started eating on her own - I mean really eating. She is still depending on the formula for calories but she is taking it orally. She is tolerating food much better and at some meals can outeat Violet.
*Anara is starting to run and trying to learn to jump.
*Right now Anara is holding play-doh in her hand and this is the 1st time she has ever tolerated that texture.
*Anara's vocabulary is rapidly expanding. She is even speaking in 3 to 4 word sentences. You can understand her when she says, "Here go Mommy", "Happy birthday Daddy", "I pottied", "Okay Mommy, I won't", and "All done Mama". She mimics Violet and will even make the sounds with correct syllables for longer sentences. She can sing her ABC's but will not perform on command. Her favorite thing to sing is, "Small one, small one, small one for sale," a song from one of our Christmas movies.
*Violet has not had to use the nebulizer in a while. I love it when that thing is put away and not part of our living room decor.
*It is almost time to do our taxes and the adoption credit will help pay back Anara's loan.
*We have made it to church three of the past four Sundays (is that right Nate?) and three Wednesday night dinners. This is amazing because something always happens (sickness or being out of town) to make us miss.
*The girls are sleeping through the night for the most part. Anara isn't getting a midnight bottle consistently and last night, although we heard them, they never required us getting out of bed.
*We had a successful 12mo. post-placement visit with our adoption agency and won't have another for 6 months.
*Monday was Nate's birthday. The girls and I spent the day making a carrot cake and dinner. They were excited to be making birthday preparations. Violet even picked a Mickey card from the racks and wrote in it herself. She told Nate, "It says Daddy and it kind of says Dora."
Tuesday, January 29, 2008
Friday, January 25, 2008
Friday, January 18, 2008
Lunch in the playroom - combination of real and play food
At least she pretend eats
Vi helping with dishes
Our little Kyrgyz Afghan
Christina brought both the girls Afghan outfits
Vi has a little head covering envy
Vi helping feed Anara
Anara was getting a little too much attention
Wednesday, January 16, 2008
The good news is that Violet stayed dry all night and didn't wake to be taken potty once. I think she was pretty proud of herself. I guess that is the key for her - no drinks after supper and multiple trips to the bathroom beforehand ;) At least that is what worked last night.
We spent about 4 hours at the hospital this morning. Anara saw her developmental pediatrician and we added one more doc to the regimen, a behavioral pediatrician. She had some granulation tissue burnt off her g-tube, one spacer taken off the g-tube and some work done on her skin. A skin nurse (wound nurse, ostomy nurse whatever they are called) put a sheet of something over her abdomen to preserve her skin integrity. We tape and retape so often that she has developed this weepy rash. Apparently this plasticy, gummy sheet will stay there for at least a week and allow us to tape over it.
The most recent development is that Anara's tonsils are large enough to almost touch in the middle and maybe they are causing some problems. I remember the dev. ped. saying something about that her first visit, but never thought much of it. She is wondering if Anara's restless sleeping, night waking, and loud breathing during sleep is caused by the tonsils (sleep apnea?). I told her that the smell of Anara's breath can mislead us to check her diaper and she said that also might be tonsils holding rotten food. I just thought it was because she was on so much antibiotics all the time and didn't eat much. The tonsils also might be exacerbating the feeding issues (gagging and puking). Now we get to do a sleep and swallow study. Part of me thinks we are getting by just fine so why do we need more exploratory stuff and part of me wonders if maybe there is something wrong.
Tuesday, January 15, 2008
Things are going pretty well. Right now I am listening to a 1 and 2 y/o attempt to whisper in their room. I guess they don't understand that making your loud voice scratchy doesn't necessarily constitute a whisper. I think I might have just committed slumber suicide - both of the girls in the same room (we have made several unsuccessful attempts at this), Violet not wearing a night diaper for the 1st time, Anara didn't meet her calorie goal for the day, and I took Vi's water away (it's really dry in her room and she drinks a lot at night, but we gotta try this night training thing). Oh well - can't be any worse than last night (a tired mom's last words).
I was sick Saturday through Monday and Nate ran the house. He did a great job and it was kind of nice having a break, although I wouldn't recommend being sick as a way to get vacation time. I had a killer sore throat, achy body, headache, and a generally crummy feeling. A couple times I thought I might have had a fever because I was uncomfortable and abnormally freezing.
Wow, this post is getting boring pretty fast. I used to think I was an "okay" blogger. I mean, even if every post wasn't witty or charming at least I was consistent about putting something up. Now I sit here barely even weekly and struggle to be interesting or entertaining in the least. I don't even have a slew of photos to distract you from my lack of ingenuity.
One important thing I guess... we have been having some issues with Anara's catheterizable channel. We have had several incidents when we were not able to get the catheter into her reservoir. Fortunately she still has one emergency drain (suprapubic tube) intact or else we would have a legitimate emergency situation. We saw the urologist last week and for a while he was almost stumped. We were beginning to think that maybe another surgery was needed. Then I mentioned having been able to catheterize her when she was standing at a time when I otherwise wasn't getting through. We thought that was our answer (that and a new kind of catheter). We hadn't had any problems until today. I am hoping that this situation will never occur again because we would really like to avoid another procedure.
Time for me to go make tea and sit on the couch. I will let you know what happened with the sleeping thing and we will keep you posted on Anara's channel.
Thursday, January 10, 2008
I have suffered from this disease from the time I started forming words. You might think the symptoms would lessen over time or that one might become accustomed to them, but anyone who suffers from this illness realizes that the pain is the same with each onset. I am not sure the prognosis, but I do know that there is hope for a cure.
There are times when I am stricken with PCR and have to take immediate action (ie. phone calls, emails, letters to apologize for foolishly speaking) and there are other times when I just pray that people are able to overlook my words and maybe they will actually forget them. Sometimes this disease keeps me up at night, lamenting my choice of words or my inability to contain opinion and restrain insufficient attempts at wit. This disease does not only strike after face to face conversations, but thanks to this technological age it can occur after email, blogging, and even worse, instant message. You would think that forming thoughts into type might encourage one to slow down and reconsider but most of the time I just become more bold without restriction of seeing a face.
I had a brief period of remission during college when a close friend of mine used to remind me that I need only close my mouth to keep words from falling out of it. It is difficult for me to use that bit of medication on my own, thus I have returned to my open-mouthed ways. There have also been times when I have worked on the discipline of silence or at least less words than I am usually accustomed and during these times the sting of PCR has lessened. But so far, all of my attempts have been short-lived and it takes only a little while before it comes upon me having misspoke, overspoke, or spoke out of turn.
There are good days and bad days with this disease. Sometimes I pride myself on the restraint I have shown or the fact that maybe once I allowed someone else to do most of the talking. But on the bad days the words have exploded out of my mouth like fierce diarrhea. Yesterday was a bad day. The first onslaught found me needing to delve out an immediate apology and the second episode merely ensured that I would not be sleeping until I had replayed every idiotic morsel of thought that escaped out of my mouth before I was able to snap my jaws shut.
Sometimes I soothe myself thinking that maybe God created me to be this way - bold, energetic, and outgoing, but the reality is that even though my personality is prone to be bold, there is still a level of discipline and wisdom that must be exercised. Perhaps this curse will lessen as I grow older and more wise. Maybe someday I will go to bed after social interactions without questioning myself or wishing that I hadn't spent my words so foolishly. But for now I will continue treating it as best I know how - preventatively, reminding myself that I mustn't speak unless I feel it beneficial to do so and retroactively, by apologizing and cleaning up the mess I have left behind.
If you too suffer from PCR, then know that there is hope.
Epilogue: I wrote this one day last week. Nate didn't really like it that much. He says I am not that bad (and I don't think he thought it was funny at all). Even if the things I say aren't that bad, it's the fact that I stew over them so long. And, even if it isn't that funny I had a spare 1/2 hour and I was stewing over the fact that I stew.....there you have it.
Monday, January 07, 2008
I posted Vi saying Luke 2 to Youtube after requests to see it bigger and have copies. I am not sure whether it can be downloaded from youtube, but it can be downloaded from Google Video. I am not crazy about youtube because of the video recommendations that come up after you view your video, but here is the link
Also, here is the Google video link http://video.google.com/videoplay?docid=-4773963357755297978&q=Luke+2+Violet&total=3&start=0&num=10&so=0&type=search&plindex=0
Anara is doing great. Our goal for her now is to decrease her dependence on her feeding tube. She has decreased the amount of food she will take by mouth and now we are needing some additional support to wean her from the feeding tube. Hopefully this process won't be too long or painful. I should be praying about it more often.
Anara's vocabulary is increasing and she has been putting words and ideas together. Just a few minutes ago she walked up to me and told me, "Daddy home". I said, "Do you want Daddy to come home?" and she said, "Yeah, Daddy home." She is mimicking everything Violet does and this can be unfortunate at times.
Violet is doing well. She can be a little bossy and I have no idea where she gets this ;) Her most recent obsession is Mickey M. They have done a great job plastering his smiling face all over everything. Yesterday she found him multiple times in the grocery on things like crackers, sundae toppings, and edamame. This morning she found him on some junkmail.
I am thinking about making the blog private. This isn't to block any friends, family, or admirers ;) - just to make sure that our whole lives aren't totally accessible. I plan on emailing access to our email list, but if we don't have your email and you would like to continue reading just email us at firstname.lastname@example.org I will give a couple more warnings before actually changing the settings. I hate the thought of this since we have been blessed with new friends all over the world, but I think it might be best.
Violet in her new princess outfit
Anara turning on tears at the suggestion of food
Empty fridge resulting in trips to 2 grocers
Groceries in our new, reusable bags