Thursday, March 31, 2011

Behavior problems at school

Joseph has had a long streak of good behavior at school lately. Yay!

Zoya, on the other hand, is having lots of behavior problems for her teachers. She is not aggressive or defiant, but just seems to flit around the classroom doing whatever she darn well pleases, not paying attention to instructions or being fazed by consequences.

We have never really dealt with a child with these kinds of behavior issues and I am really at a loss as to how to address it. It doesn't help matters that the school is completely limited on the kinds of consequences they can give to the kids. Even some time out situations are considered 'restraints' and are not allowed in a school setting.

If anyone out there has had these kinds of problems and would care to share what has worked for your child, I would be ever so grateful. We have tried tempting her with rewards at the end of the day for good behavior but she doesn't seem to even care.

Joseph IS doing so well though, and that is certainly something to celebrate. Now if he would just teach Zoya how it's done!

Monday, March 28, 2011

PLEASE READ and pray for Kirill and his prospective adoptive family.
Adolescence is coming on strong in the Urban household. Boy do I feel unprepared.
There was a moment today that left two Urbans (one being me) in tears, in a public setting. I know I handled things all wrong, despite being halfway through with this great book:

I pray every day that I am not screwing up too badly. I often try to imagine what kinds of things my kids will say someday about their childhood. Is it too much to hope they will only remember the good things about their mother? :( I miss the days when they were super forgiving of my imperfections as a mother (and when they could be bribed with Tic Tacs and such). I am thankful for the friend who told me long ago that it is our imperfections as parents that should direct our children to their need for their Saviour. (Thank you, Kirsten for that nugget of wisdom)


Remember all the problems we had last summer with our floors? Well we are still living with no carpet or baseboards. The money we spent trying to seal our concrete, we found out much later, SHOULD have been spent installing a french drain around our house! It turns out that all the issues we were having were related to moisture problems. If we would have invested $35 in a moisture test in the first place, we would have saved ourselves about $10,000 in contractors fees, ruined carpets, cabinets, walls, and baseboards. And yes typing that out just made me want to cry all over again. I guess nobody we hired thought to do it, and we didn't know to ask. Ugh.

Anyway, looks like we are getting back a nice tax refund this year, and guess what we are going to do with it?

NOT fix our concrete and baseboards or replace our carpet! We have a once-in-a-lifetime opportunity to take another vacation this summer, and we all agreed that the floors can wait until later. :) My parents have offered to come up and bond with the three newest additions, while we take our big kids somewhere special. And the generous friends who gave us their time share in Virginia have offered it for the rest of the year. We would never turn down an offer like that!! Hmmmm. Where should we go?
We finally got a return call from the doctor while we were on vacation. He said that although the HIV test did come back positive, he is willing to allow Zoya to take a holiday from her medications. He felt it was worth trying, to see if her appetite will come back. I am happy to say that we have noticed a teeny tiny bit of an appetite increase. Not that she is necessarily eating like other children, but a couple of times she has actually asked for food, which is a first. Also, we have changed the tube feeding schedule around a little bit, mainly increasing her lunch and dinner portion, and discontinuing her morning feeding. I am thrilled to report that she hasn't thrown up in about three weeks or so. This is so huge. And the best part is she weighs just over 26 pounds now!!!

We are now seeing a dietician regularly, and tomorrow will be the second visit with a feeding specialist. We are trying to figure out the source of Zoya's food aversions.

June, my friend who is an NICU nurse, came up with a theory, and actually it makes the most sense out of everything that has been suggested. She said if Zoya was a preemie (which she was by 13 weeks), she would have been fed by naso-gastric tube, probably for several months. She said for this reason babies born prematurely in the US receiving intense feeding therapy in the first several weeks or months of their lives. Most likely this kind of therapy was not available to a little orphan girl, thus the aversion to food. Makes sense, doesn't it?

Regardless we are determined to figure it out, and we pray that the g-tube is just a temporarily solution to get her over the hump.

By the way, her cleft palate surgery is scheduled for April. If the surgeon feels she is healthy enough, we are absolutely going through with it. Boy it will be nice to have that over with!

I guess that's today's family update. Hope YOU are doing well!

Thursday, March 24, 2011

Spring Fever

Today it was decided that we needed to ease up on our homeschool schedule and take lunch to the park with our friends, the Wrights. I brought my camera to the park to take pictures, but instead the moms sat in the nice warm van and visited while the kids froze their tails off enjoyed playing outdoors this fine spring day.

You know you are a homeschool mom when you have an hour and a half to catch up with your girlfriend, and you spend the whole time talking about sentence diagraming, cool math websites, and interesting facts about presidents.

So why did I take my camera all the way to the park on a chilly spring day but not take any pictures of kids playing?

I have no idea.

But I did take this photo:
We went to Wendy's for lunch. Liesel ordered a chicken sandwich----with the lettuce on the side to share with a certain someone peeking out of the carrier. And yes he did come to the park with us.  I have to say Prince is one spoiled rodent!

Earlier I had decided to run up to the school and rescue Hope from her peanut butter and jelly sandwich; I took her out to lunch instead. I feel as if I am always up at the school dealing with tube feedings or behavior problems , or taking one of the kids to the doctor. I wanted to make sure Hope knew that she is special too.

She wanted to go to the "Pat-a-Cake Pat-a-Cake Baker's Man" as she calls it (otherwise known as the  sub and deli shop just up the street). 

She asked me why the baker painted on the window looked so surprised? 

I told her maybe a busload of people just showed up and he didn't have enough food for everybody!

She said.......
"Maybe he just saw his girlfriend kissing his cousin!"

Hmmmm. That WOULD be quite a surprise!:) 
Love that girl.

Tuesday, March 22, 2011

Virginia pictures

Virginia Beach

Colonial Williamsburg


Washington DC

Yorktown Battlefield

There! Did it work that time?

Monday, March 21, 2011

Technical difficulties, but we're back!

Due to technical difficulties, the Urban Spring Break picture post has been postponed to a later time. I worked hard posting them last night and this morning they had disappeared. Will try again soon.

We had a wonderful time in Virginia and would like to thank our very dear friends who so generously donated their time share so we could have a once-in-a-lifetime family vacation. Thank you Friends!!

Driving straight through 22 hours each way really wasn't as bad as we feared it might be. Joseph and Ava tie for first place for the Best Traveler Award!!

Pictures coming soon....

Tuesday, March 8, 2011

Well Fiddlesticks!
The test came back positive after all. :(

Wednesday, March 2, 2011

My musicians

I love technology!! (At times)

My Mom and my Grandma Skyped the kids today to hear the pieces they played at the Music Festival over the weekend that earned them each first place in their categories/instruments (Jude-piano, Liesel-guitar). When I think back to the 80s when I used to imagine the future, I don't remember imagining a scene like this!!!....

.....A computer screen sitting on a bunkbed holding two 'live', admiring grandmas! 

We messed up by using an new and unfamiliar video camera. Not only did we not press the right button until halfway through the song, but we ran out of memory on the card and thus were only able to record one kid for only half of the song. Here he is....

 We were shocked when he was chosen for first place. He has only had just over a year's worth of piano lessons! So proud of this boy.  The music genes are certainly NOT from me. Maybe they skipped a generation, or they are from John. Not from me, not even a little bit.

Liesel also won first place in guitar. (I suppose I don't have to mention that she was the only guitarist competing.) Regardless, we are proud. She played well, and both kids will be going to compete at the state level. How exciting for all of us!

We were able to pick up my 96 yr. old Grandma from her nursing home and take her along with us. (I am referring to the other Grandma, the local one. Is it unbelievable that both my grandmothers are still living and healthy!) We took her with us to the afternoon part of the music festival. It was special that she was there to see Jude perform, and then win first place. We stopped at Braums for lunch and ice cream and I took this picture of the whole gang.

She is hilarious. Grandma said, "People are gonna wonder whether you are running a nursing home or a children's home!" We DID get a few funny looks!
You guys don't know how much your comments mean to me! You gave me encouragement, and you also gave me ideas!

I spent a while on the phone today talking to a nurse through our health insurance company, learning about benefits I didn't even know we had. She even offered to make some calls for me and get the ball rolling on a referral for a dietician and a GI specialist. I am not the most assertive and persistent person in the world and so this was a welcome gesture. Our family has always been so healthy, even the children with Down Syndrome...I haven't really known where to begin searching for the services we need for Zoya. Nurse Debbie, who works for United Healthcare, is super friendly, extremely knowledgeable, and returns phone calls promptly. I think I might have accidentally told her I loved her today. :) By the end of the day, Debbie had found a dietician in network, spoke to her personally, and called to get my permission to pursue the referral with our pediatrician tomorrow. I think we are finally getting somewhere.

Meanwhile, after my long post last night, I went in to find vomit all over Zoya's bed this morning. I think she puked the entire thing up. Is it sad that as I'm cleaning it up, I'm calculating how many dollars, as well as calories, were wasted?  We have decreased her feedings a little bit for now until we can see a dietician/GI to determine what is the problem.

Having 90% of my time, resources, and energy going to one child has obviously had an impact on the rest of the family. Mainly my homeschoolers. After all these calls must happen during business hours, which are also school hours. I wonder how many days these last few weeks our assignments/lessons have been things like Basic Laundry Techniques 101,  Nutrition 101 (i.e. how to cram the most calories into the smallest space), 7th grade Math Problems: "If a child needs to consume 237ml/ can, times four cans, over a 12 hour period, how many ml will she need to consume per hour?".....Etc.

I am confident there are good changes coming for Zoya. I can't wait to write a good report about her soon!

Tuesday, March 1, 2011

Zoya update

I am absolutely exhausted. Perhaps I should just go to bed early, but then I wouldn't get to enjoy the wonderful luxury just sitting here on the computer in peace and quiet! ;).

There have been so many moments these last couple of weeks that have left me either laughing, crying, or screaming in frustration. Who knew getting supplies to a child with a feeding tube could be so complicated! It has just been one issue after the next.

-First, the box of syringes that was sent was delivered to the wrong address....specifically the abandoned property next door. The next day the blizzard came and the box has never been seen again.
-I called about two weeks later to report the box had never arrived, they tracked it and found out what happened, and resent a new order.....
-Except this time, they sent a new mickey button instead of the syringes we ordered. Oh well, I thought. We will need one eventually so I'll just hang onto it until later, and then call on the syringes again. Yesterday I received a bill for $176 for an item (mickey button) we didn't need and didn't order. When I called, they said they have on record that I did call and order one. But why would I have done that when I haven't even been given instructions to change it out until April?
-When the dietician set us up, she calculated a 'discounted' rate of $16.74 per case of 24 cans of Pediasure (or so I heard). This was far cheaper than clipping coupons, so we agreed on this price. I was really pleased and thought I had gotten a great deal on this. Got the bill later, and realized it was really $67.40. Maybe I need to get my hearing checked. ha
-Later, when she wasn't gaining enough weight, we switched her to a pump. Nobody seemed to know exactly which doctor was supposed to order the pump. Did it need to be the developmental pediatrician who recommended the increase? Or our primary care physician? Finally the pump and a pole came but without a clamp to hold it....
-I called three times looking for that clamp. Each time they said they would deliver it the next day. They didn't.
-A week later it arrived by UPS. While I was signing for the package outside, the phone was ringing inside. It was the medical supply company, leaving a message to notify me that the reason we didn't receive a clamp was because that particular pump we have doesn't have a clamp. He said you're supposed to just rest the pump on a table. Hmmmmm. So then why did they deliver a pole to hang the pump on?
-Came in the house, and tried anyway. The clamp worked perfectly. Hmmmm???
-We compared prices on formula and realized that even with clipping coupons we were going to be paying about $2,500 a year JUST on Zoya's formula!  Since we found out our insurance doesn't pay for the formula, (according to the hospital staff, the medical equipment, AND the insurance representative herself), we have been clipping coupons, applying for the company's discount programs, and learning how to make homemade tube an attempt to save money.
-In order to qualify for the company's discounted price, we have to show copies of our tax return, paycheck stubs, fill out forms, and get a letter of coverage denial from the insurance company. I got all the way to the letter from the insurance company, and when I called to ask for it, the insurance representative told me that I'm mistaken....They DO pay for Pediasure.  Hmmmm. So why did the first lady I talked to two months ago tell me they didn't?
-So I called the medical supply company and told them to bill insurance for the Pediasure, and the customer service rep said, "Are you SURE that's what they said?...United Healthcare very rarely covers formula. I just can't imagine them telling you that they do. WHO told you this again?" BIG SIGH. So I guess it's more phone calls tomorrow.
-Meanwhile, we have yet even to this day, seen a dietician, other than the one who discharged Zoya from her hospitalization in December. There is nobody other than me who is monitoring her weight, watching what she eats, trying to increase her caloric intake. This is so disheartening to me. I have asked several doctors for a referral, and without fail this has slipped through the cracks over and over again. Today I finally got a message that the referral has been sent to a speech therapist who specializes in feeding therapy. This is definitely a step in the right direction, although it is not a dietician. Nonetheless I left a message on the voicemail today and praying we can get in soon.

We started out by feeding Zoya a total of 3 cans of Pediasure a day. She gained a little at first but then slowed down. She also started vomiting frequently then, which was new for her. It seemed to correspond to the increase in her medications, although I can't get a doctor to confirm this possibility (they think it is due to FAS). Eventually she was back down to 23 pounds and it became clear that she was eating even less now since she had her g-tube put in. The developmental pediatrician calculated what she needed, and said that 3 cans was barely even enough to sustain her, let alone make her gain weight. So now we are up to 5 cans a day. The only way it was possible to get this amount into her tiny stomach was to put the feedings in a pump at night. So now she is on a slow drip over 12 hours...4 cans at night, and one can spread out via 3 bolus feedings during the day. This is working out pretty good, except that she is still nauseated and vomiting, even occasionally at night, and is now virtually eating NOTHING by mouth. We still try of course. Boy do we try! If and when she does take a bite of something she usually holds it in her mouth. Often later we find it spit out on the floor or in the trash can. This little girl is breaking my heart. 

I really have had to ask the Lord to deal with the lack of compassion in my heart towards her birth mother. Every hurdle Zoya faces is a direct result of the substance abuse that she had to endure in her mother's womb. It is really hard for me to have feelings of forgiveness as I watch my emaciated daughter gagging up her graham cracker into the trashcan, or holding food in her mouth because she wants to please me but she can't bear to swallow the grape. Sometimes I cry when I see the panic and anxiety on her face when I tell her it's time to eat. And it just seems to get worse and worse. I don't think I will ever again be able to enjoy the beer commercials on Superbowl Sunday. :( I wish more people were talking about fetal alcohol syndrome. BTW this diagnosis has been confirmed, as all the other genetic tests have come back negative. :( Boy that was hard.

Incidentally, after making a hundred phone calls trying to understand some conflicting reports we have been receiving between different specialists, I finally got some answers. Zoya has had one positive HIV test, and two negative tests. One doctor felt that she may have been misdiagnosed and mistreated all of these years. Another doctor feels that although the tests should have all been consistent, he thinks the fact that she has been medicated so regularly is just causing the virus to be undetectable. Either way, the HIV results have been almost too good to be true. On Monday we ran another test that *should* confirm. If it continues to show negative, we are planning to discontinue all her medications. Oh, please let it be negative. Please pray with us! We feel that the drugs are poison to her little body, and she needs to get well! The doctor said either way he is willing to work with us on her medications to see if they are indeed the cause of her nausea. He may even be willing to let us put them on hold for awhile and just see what happens. Praise the Lord that we are finally getting somewhere with Zoya!!

Are you still reading? If you are, perhaps you can see why I'm so tired,  but would rather stay up in blog world where all doctors, medical supplies,  and insurance companies, are closed, children are asleep, and nobody needs my attention for a moment.