Sunday, December 30, 2007

Dec 21st through now...

Anara's nuclear medicine scan (the 21st) went great and her kidneys look fine. We have been spending time with family and friends for the holidays. Our rounds should have been complete today with a trip to see Nate's extended family but both girls are coughing and have runny noses. Colds aren't just normal colds in our house. Anara does great with them (little bit of coughing, runny nose, couple fevers and it's gone), but Violet is a different story. She coughs non-stop and this is why we ended up with steroids just a few weeks ago. I hope she outgrows this but until then the sound of the nebulizer will be ringing in our ears.

Tomorrow Nate and I are taking a train to Chicago. We are staying one night and then bringing the train back. This was my Christmas surprise and I am pretty excited (except for the sick kids part). This will be my 1st time away from Anara (for more than a few hours) since surgery and we could use the break.

Wednesday, December 19, 2007

Thoughts on adoption...

A week of normalness and I've finally had some time to stop and think. Anara and Violet are back in a routine. Anara is walking and playing and has resumed Anara-like activities. She isn't requiring as much care and her little personality is really coming back. Yesterday I was playing with the girls and all the sudden it hit me that Anara is just one of our kids. You are probably thinking, "Duh" but it has taken me a while to have this emotion hit me without having to think through it or force it. I have loved her for a long time but things hadn't quite clicked for me. Yesterday it hit me all the sudden.

While the girls were playing, I had a little time to catch up on blog reading. Many of my friends had focused recent posts on adoption. I don't spend a lot of time really thinking about adoption. I say Anara is adopted but I don't really stop to think about what that means or what we went through to bring her home. She just seems like a part of our family and I forget what life was like before we had her. Our OT mentioned that we didn't get Anara until she was almost a year old. I had to stop and think about that, "Really? Anara spent almost a full year of her life without us? Wait, we have actually only had her for 8 months." Anara has lived more of her life in an orphanage than in our home. I spent some time thinking about this and started feeling a sense of desperation and urgency. I forgot what Anara looked like when we walked into the tiny room where they had her isolated because of her medical condition. I forgot that she was standing in a crib soaked with urine and stool. I say this not because they weren't doing a good job caring for her--I believe they were doing the best they could--but because it is the way things were without a mom or dad. She was so skinny and weak, and she couldn't even sit on her own.

Our road to Anara was not easy - there are many obstacles involved with international adoption, but we were able to see God's hand in everything we went through. Our time home with Anara has also not been easy. I have run the gamut of emotions from elation at growing our family through adoption to being absolutely overwhelmed by the fear that things would never again be normal. Anara had some behaviors (and still does) that are signs of institutionalization. Caring for her medical needs is difficult sometimes and runs us ragged. Fighting with her over feeding, bathing, and other daily activities is sometimes extremely frustrating and stress producing. Often I am afraid that things will always be hard and a couple of times I have worried that we have bit off more than we can chew. However, this is not the case. God through the support of family and friends has met our needs and provided exactly what we needed for the time.

I do not think that international adoption is for everyone. It is definitely not for the faint of heart. As with biological children, there is no guarantee that what you see is what you get. You cannot predict the issues that come with adopting anymore that you can predict that you will have a healthy and perfect newborn. It is likely that your institutionalized child might have behavioral and emotional needs that require extra care. However, living in the U.S., we have wonderful resources and people to guide us through these experiences. Knowing and trusting God will give peace and grace to deal with things that seem impossible.

I am not sure why I am writing this. I do feel a sense of urgency. I would love to adopt again someday. I was talking to a friend who said that Nightlight's Kyrgyzstan program has grown considerably. They have had referrals for very young babies. This is not usually the case with international adoption. The wait does not seem long for this country. I don't really care where people adopt from - an orphan is an orphan, but I do think it is good to go where the need and the openings are. Unfortunately many countries are not open to adoption right now and you have to go where the children are available. Kyrgyzstan is a great program and a great opportunity. We enjoyed traveling there and while we didn't witness the magnitude of the orphan population, I have heard that it is substantial and the resources available to care for these kids are very limited.

Maybe I am just posting this to process my own emotions related to the issue of orphans. Maybe it will prompt people to consider embarking on this journey. Hopefully it will serve as a reminder for all of us to take seriously the issue of orphans globally and to figure out what our individual contribution could be. I would love for every family to have their own Anara, Noble, Beck, AP, C, Matthew, Joshie, Kenny, JJ, Zeke, Sofia, Alina, Audrey, Kiah, Jake or Luke (sorry if I forgot anyone), but I realize that adoption isn't for everyone. However, everyone can do something. We can all pray for orphans. We can financially support legitimate adoption agencies, churches sponsoring adoption, foundations, or couples we know that are adopting. We can be foster parents for kids in our country. We can journey to other countries to hold babies and play with kids.

Tuesday is Christmas. I cannot imagine Anara having spent another Christmas in the orphanage. At a time when we travel to see family and every get together is a celebration, I cannot imagine her alone in a crib. I am praising God for the amazing blessing of Anara. Adoption is very near to our heart and I just had to post some of the things that I have been thinking lately, but I think my friend Jen put it best when she said, The last thing I want to do is elicit more "Look at you, you're doing such a good thing!" comments. It's not that we are so special or saintly. It's just that we've seen the needs with our own eyes. If more people saw, they would feel the same way. I hope that you have a wonderful Christmas and that we all have an opportunity to remember Christ's coming to earth and becoming flesh so that we could be adopted into His family.

Tuesday, December 18, 2007

Luke 2

It has become a tradition in our family for a young one to memorize and recite some of Luke 2 during our Christmas festivities. Violet is almost ready for a turn this year (minus a few skipped or mispronounced words). Here is video of Violet following in cousin Guy's footsteps (posted especially for those that can't see her do it in person).


Luke 2
So Joseph also went up from the town of Nazareth in Galilee to Judea, to Bethlehem the town of David, because he belonged to the house and line of David. He went there to register with Mary, who was pledged to be married to him and was expecting a child. While they were there, the time came for the baby to be born, and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no room for them in the inn.
And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, "Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger."
Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,
"Glory to God in the highest, and on earth peace to men on whom his favor rests."

Monday, December 17, 2007

Open House for Anara

We will be having an open house at Amanda's mom's home on December 27th. The open house will be from 4-7pm. Please feel free to stop in to say hello and have a cup of coffee or tea. Some people have expressed a desire to meet Anara (she was on a few prayer lists) and this seemed the best way to make that happen. We would love an opportunity to express our gratitude for your support and prayers in person. If you would like to know how to get there or want to let us know you will be stopping by, you can either comment to this blog or e-mail us.

Please no gifts!

Sunday, December 16, 2007

1st steps 2nd time...

She walks again!

Here is a video of this morning's accomplishment.

"I will never do that again Mama - I promise"

This is what Violet said when I caught her sneaking licks of the gingerbread house last night. I looked at the dining room table and saw a little hand reaching up to scratch frosting off the gingerbread centerpiece. It was too cute to really punish her especially after the "promise". I'm not really sure where she came up with "...never do that again...promise" but she sure is using it lightly. The gingerbread centerpiece is kind of like the tree in the garden and just another reminder of Violet's humanness. If it were a bowl of chocolates it would be a reminder of my humanness.

Below are some pictures of Violet's temptation. It certainly is a sight to behold.

This morning we awoke to a beautiful snow (as did the rest of the state) and we decided to let the girls open the presents from Nate and I. Violet got Chutes and Ladders and Anara got Brown Bear colorforms. It really wasn't too exciting but we captured the moment.

Yet another reminder of our humanness...

Wednesday, December 12, 2007

Gettin' off the juice, 'roids, Arnies, junk or whatever you want to call it

Okay, I know they aren't the same thing but it wouldn't be as much fun to say, "Gettin' off the corticosteroids".

I mentioned yesterday that Violet was put on Prednisone again (hopefully for the last time in her life). She is an absolute wreck. It is 30mg of pure madness. Her personality has totally changed and she is a poor, helpless, little monster. She has very little impulse control (even less than her normal toddlerness) and she cries about everything. I know that some families have to deal with mind and behavior altering drugs on a regular basis and I just can't imagine. I feel badly for her because she recognizes that she is out of control, but there still has to be an expectation of appropriate behavior. Just a day or two more...

Anara, on the other hand, is doing great. As long as I set the oven timer to remind myself to catheterize her on time things will be okay. A couple times I haven't set the timer for myself and then panicked when I remembered to look at the clock. Thankfully I haven't missed the mark by more than 15 min. but that could make a big difference considering we aren't moving to a 2 hour schedule until next month. Next week Anara will have a Mag 3 renal ultrasound to check out her kidney function and make sure there is no more reflux.

I know I know - 3 posts in two days - don't worry it probably won't happen again.

Almost Christmas...almost cookies...

This morning Violet had a desire to bake some cookies. We haven't baked cookies since coming home from the hospital and although I really didn't care to dirty the kitchen, I remembered a gift we received and thought it was time to employ it. We embarked on the tear apart sugar cookie gift, and after Violet adjusted to the fact that there was nothing to stir, she enjoyed tearing the dough on the perforated edges. She wasn't satisfied with just tearing the dough and putting the squares on the cookie sheet so she suggested we make some changes. "Mama, let's put some chocolate chips on them." I got her a bag of chocolate chips and she started adding them to the dough squares. After a few minutes of adding chocolate chips and mashing the dough, she decided that we needed some red hots. In the meantime, I decided that my pan of squares needed something more too. I got one of Anara's new syringes and melted some peanut butter. I sucked the peanut butter into the syringe and filled the insides of my pan of cookies. I probably won't be able to use that syringe to irrigate Anara but it's okay because we have plenty.

Tuesday, December 11, 2007

8 - 6 = 2

Only two tubes left - the suprapubic and the g-tube. The suprapubic should come out after Christmas and who knows when the g-tube will come out - that is up to Anara. She is not really interested in food and still depends on the tube for most of her calories. Yesterday we went to the urology clinic to have the one remaining ureteral stent removed. She seems to be draining and holding urine well between catheterizing.

Violet had an appointment with the pulmonologist yesterday and she timed her current illness perfectly. She performed for the Dr. and ended up having her oxygen level checked and we came home on prednisone. I was a little disappointed that she has to have oral steroids and tried to convince her MD otherwise. This just seemed like normal Violet cold to us. Actually it probably is normal Violet sickness but we have never had a pulmonology appointment coincide with it.

Last Friday night we decided to take Anara on her 1st non-hospital outing. We went downtown to see the lights and walk around. She loved being out riding in the stroller and car, and it was fun to have her out and feel like an almost normal family again.

1st car seat ride P.S. (post surgery)

1st restaurant P.S.

1 second the hat was left on

1st Christmas light show ever

Thursday, December 06, 2007

New dog old tricks

We went into surgery Tuesday with starry eyes. It was the surgery that would end this season and finally return things to the way they used to be... I had Anara's backpack packed with a shirt, pants, socks, shoes, bottle and we had the car seat ready. We were pretty excited about our "quick" procedure.

The ambulance was scheduled to pick us up at 11:30am but still had not arrived at 12:10. We arrived at the hospital at 12:30, checked in, and laid Anara in a hospital crib. The minute the rails (jail cell bars) went up and locked into place Anara burst into a scream that would last at least 30 min. Anara's surgery was scheduled for 2:00pm and they finally came and got her around 3:45pm.

She was still sleeping when we went into the recovery room about 6:30pm. When she woke up she was begging for water and drank a small amount. She threw up immediately and got some IV Zofran. She continued to throw up every time she had water Tuesday night. She was very sleepy and fragile after surgery and we didn't want to move her too much. She left the hospital the same way she came in - strapped to a board and wearing only a hospital smock (so much for our big plans).

Our expectations weren't a result of total naivete. We were told that Anara might actually walk out of the hospital (I guess other kids have) and had no idea that she would be so weak and wimpy. We expected she might have a little muscle weakness, but discounted the anesthetic effect and the fact that she hadn't been even held upright for almost 7 weeks.

When we got home she was a little more awake and was enjoying being able to be held. We were excited to be able hold her upright and tried to get her to put her feet down. She was so wobbly and shaky - not only her muscles but even just holding her head still and upright.

Yesterday I was a little more brave with Anara. I put her on the floor and asked her if she wanted to crawl. She said yes and rolled herself over only to find that she couldn't even push up with her arms. She just laid flat on her stomach and pushed herself forward with her feet, dragging her bags behind her. She was able to bear weight on her legs for short intervals but was still extremely shaky and off-balance. She couldn't even sit unassisted because of the balance issue (and maybe trunk weakness ?).

But today.... Today she sits by herself (pillows behind her just in case) for short periods. Today she crawls (funny as it may look). Today she still doesn't walk or bear much weight but we are progressing fast.

Even though Tuesday didn't bring normalcy and wasn't the "end", I do realize that it was a major step. We are left with only 3 tubes (SPT, G-tube, 1 Ureteral Stent) and our appendicovesicostomy.

We are currently on a 1.5 hour catheterizing schedule and will work have worked up to a 2 hour schedule by this time next month. We are going very slow since bowel isn't as stretchy as bladder tissue and we don't want to risk perforating her reservoir. She is hooked up to a drainage bag at night so that we don't have to continue the 1.5 hour cath. schedule through the night. Hopefully someday her reservoir will be able to go 8 hours at night - hopefully.

Here is a video from today. Anara is crawling pretty well and Violet is excited to have her playmate back. You can see Anara's ureteral stent bag tucked into the back of her pants.

Tuesday, December 04, 2007

Pic Fix

Anara's procedure today was another successful one. We'll post more details on how everything went later (maybe). Until then, thanks again for all the prayers and encouragement. Anara is home, external fixator is gone and she's already loving it.

Clowning with stickers before surgery.
Mama holding her two babies.

Pizza party to celebrate the homecoming.

Look at me!

Thank you, God!

Goodbye Fixator

We are scheduled for surgery at 2:00pm for fixator removal. If the x-rays are satisfactory after surgery then we will come home without hardware. If the orthopedic surgeon isn't happy then we will have some kind of brace or cast. Unfortunately I don't think we will be losing any of the tubes today, but we will see. Surely they have some secrets to letting a toddler lose with 3 tubes and drainage bags ;) Tonight I will try and post a picture of untethered Anara.