Adopting Grace

The journey to bring our little girl home

Shaved

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This is going to be short because I’m tired, but just wanted to let everyone know Leeza made it through surgery just fine. Her shunt looks good so far and the doctor said he didn’t find any surprises today (always good when you’re talking about a brain!). She is in ICU for a day to make sure she’s responding alright and is not so happy that her hands are all taped up to prevent her from ripping out her IV and monitors. She’s also not going to be happy when she sees what they did to her hair. Dr. Menezes heard that she was concerned about them shaving her head so he tried to be conservative and left some curls around the front of her face…everyone else will be able to see the big bald spot, but she probably won’t! She did great through the whole thing and is resting pretty well right now. All in all, it’s been a good day full of lots of blessings from God. My favorite part was watching her heart rate in the recovery room as Philip told her he loved her. Each time he said it her rate would increase. We all know it’s important to tell our kids we love them, but to see her responding to it on the monitor was cool.

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We Made It!

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After a last minute scare about another infection we found out last night that Leeza is fine to have her shunt surgery on Monday! I’ve been keeping the kids isolated except for church and occasionally the library and Leeza’s been on 2 preventative antibiotics to get to this point so we’re pretty excited to have made it this far. She will have a shunt placed from her brain to her abdominal cavity to relieve the pressure of all that extra fluid in her brain. She’ll be staying at University Hospital for 3-5 days after the surgery and we’ll be juggling kids between the 2 of us, some family and several church members. Thank God for family (bio AND church!)!

Other than that we’re staying busy with normal preschool stuff…Kas is cutting all 4 molars and learning to walk this week, Grace has an on-again-off-again relationship with potty training, Leeza suddenly loves books and Josiah is continuing to learn to read and mastered zippers this week. Philip has been Super Dad (as usual) and my claim to fame this week is that I got a carrot, 3 peas and 4 edamame in Leeza. And we all survived horrendously cold temperatures without any frostbite or falls on the ice. Not too shabby!

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Can I Applesauce?

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Leeza celebrated her first Christmas and New Year’s at home and was, I’m afraid, pretty confused. However, with all the  cake, family and presents involved it didn’t seem to bother her one bit and she had a great time! She understood that we kept telling her it was Jesus’ birthday, but since ‘baby Jesus’ is a small toy in the nativity set to her I can see where that would be a bit hard to understand. She kept giving us a ‘my parents are so confused’ look and telling us it was HER birthday. Despite not really knowing what was going on she had a blast wearing her new tu-tu, pink satin gloves, playing with Cooties, eating fun treats and enjoying her Daddy being home so much. She got to spend her first real holiday with family and has spent the last several days wondering where they all went and telling us her Nanny and Sadie are ‘silly hooses’ (silly gooses).

She’s been home about 2.5 months now and while it has not been as smooth a transition as I’d hoped for, we’re starting to see some real progress. In the midst of all of her medical issues and her still trying to figure out our family it’s easy to lose sight of how far we’ve all come. She now goes to bed and nap as easily as any of the other kids, eats most of what I feed her, can be left in a room alone without panicking, will sit fairly still during reading time, will play games with the other kids and is learning to be obedient. She’s starting to try to write her name and is beginning to focus enough during school time that she’s learning her shapes and how to recognize a pattern. Her English is continuing to grow, which is great, but it’s the odd phrases she comes up with that we enjoy the most. My favorites right now are ‘I like-a snizzle’ (I like snow) and ‘Can I applesauce?’ She is fascinated with the word applesauce and obviously thinks it means something else because she adamantly tells me that jar of yellow stuff in the fridge is NOT applesauce.

We got a new date surgery date for January 24th and are in the process of making sure she will be infection-free so it’s not postponed again. I am now on a first name basis with the PA in Urology at the University and talk to her more than my own husband some days. With a lot of work, medication and prayer she should do her pre-op on the 21st, have surgery the 24th and spend the next 5 days in the hospital as her shunt is adjusted and the pressure in her brain is monitored. One of us has to stay with her around the clock during this time so we would really appreciate prayer as we try to figure out child care for the other 3 kids for the week.

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A Dean…Again

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Leeza is officially a Dean…again. We went to court today to petition for a US birth certificate which transfers all her paperwork to America and we can stop trying to keep up with all the different court decrees and translations from Ukraine. Trying to fill out the paperwork was challenging because it had places for the birth mom info and adoptive mom info, which seems straight forward except that on all paperwork I’m already listed as her mom (since she was already adopted in Ukraine). I messed up the form pretty good, but they still granted our petition and we got pictures with the judge and I think we’re finally done with court work!

Also good news, we got her SS# recently so we also were able to get our handicapped parking placard!! It may seems like a lame thing to get excited about, but with 4 kids (2 who can’t walk) and tons of snow this is a HUGE help. It really is fun getting to park right up front. :)

On the medical front, we’re still trouble shooting her GI care and trying a slightly different program to see if it works better. We now get to wake her up late at night to cath her one more time and while that’s not really much fun, it IS funny that she can sleep through it. That simply amazes me. Her prosthetics should be here in the coming weeks and we’ll get to see how she does with those and we’re still waiting to hear when the shunt surgery will be rescheduled. We’ve been told to expect sometime in January.

In our downtime we’ve been getting ready for Christmas with books, Advent calendars, cookies, music, Bible stories, wrapping presents and keeping Kasia out of the wrapped presents. Leeza has just figured out that some of the bags have her name on them and she’s intrigued. If she knew there was stuff for her in them I don’t think we could keep her out of them. Sometimes her lack of understanding is helpful. :)

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Blue Feet

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We had Leeza’s ortho appointment today and were greeted by Dr. Dietz with, ‘Hello…you’re going to get to know me very well over the next 10 years.’ Apparently a growing child will have a LOT of ortho appointments. Today he just checked her out and sent us over to get her fitted for some prosthetics to help stabilize her feet/ankles and prevent her feet from becoming more misshapen. There’s nothing we can do about her hips being out of joint. Years ago they used to try surgery and different therapies and they learned it caused more harm than good so Leeza will remain very flexible. :) He said sometimes he can just look at a child and definitely tell whether or not they’ll be able to walk eventually, but he had to admit that he just didn’t know what to think about Leeza. For now we’ll wait until the prosthetics come in (in 2-4 weeks) and see how she does with them. After she’s comfortable with them we can start some PT/OT with her.

We also learned this week that her surgery for the shunt will be moved to some time in January because she has a UTI. The rate of infection after a shunt surgery is very high anyway and Dr. M refused to touch her if there might already by an ongoing infection.  We would appreciate prayers for keeping her UTI-free for long enough to have the surgery. Because of her cathing and some other issues this is going to be a real challenge. Thankfully the infections don’t bother her and her biggest concern right now is that her feet are dyed blue from the ink that was used to mark the castes for her prosthetics.

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Here We Go

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We had Leeza’s MRI session today and found our her hydrocephalus that ‘didn’t require surgery’ (according to doc’s from her country) DOES require surgery and fairly quickly. The fluid in her brain has caused the cavities in her brain to become incredibly large, which in turn has misshapen her skull (which we knew) and not left much room for her brain to grow. Had this been corrected early on the needed shunt would not have been too big of a deal, but because it’s gone on this long she will require a special shunt that can be adjusted as the pressure in her brain changes. A regular shunt would allow the pressure to change quickly which would cause brain damage. So, we go with the programmable shunt and a week-long hospital stay later this month. All this has to be done before we can schedule the back surgery, which will be sometime early next year.

All of this includes risks, but oddly enough I don’t think either of us is really conerned about it right now (and Leeza has no idea what we’re saying so she’s fine with it all!). Without the surgeries she faces certain brain damage and a shortened life. And it’s all totally out of our control. But God knew she would need this. He put us within 45 minutes of the only pediatric neurosurgeon in the state and one of the best in the country. He covered 100% of her adoption expenses (through His church) so that we aren’t totally scared of the medical bills we know are coming. He scheuduled this first surgery during the time that Philip’s whole company gives them a week off each year and when family might be more able to come help. And he brought her home in time for so much damage to be prevented. In fact, with this shunt we have a very good likelihood of seeing substantial improvements in cognitive abilities. While it’s certainly not what we had planned for our Christmas break, it is what God had planned. So, here we go!

Quick timeline of what’s coming soon:

1. Orthopedic evaluation next Friday

2. Court date to readopt Leeza in the US, Dec. 23rd

3. Shunt surgery,  Dec. 27th

4. Back surgery 3-6 months after shunt

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Applesauce

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Just a funny…

We had friends over the other day and the mom was trying to teach Leeza how to say her youngest childs’ name. Our friend told Leeza, “Skazsha Lydia” (skazsha means ‘say’). Leeza just looked at her and said, ‘Skazsha applesauce.’ I couldn’t help but laugh when I realized Leeza was trying to teach her English. I guess she’s had enough of us telling her what to say! :)

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The Strong Willed Child

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Although Grace flirts with being strong willed, we think we might have adopted our truly strong willed child. Leeza is continuing to adjust to life here (and us to life with her) and we’re learning more about her personality as she acts more ‘normal.’ She loves to help and will do so whether you like it or not! She has learned to love coloring and painting and has even been caught looking at some books on her own (she still doesn’t sit still to read one). She likes to be in the kitchen and loves to dress and redress…and redress…and redress herself all day long. She loves music. And she loves to push the limits we have set. At this point it’s difficult to tell whether she is going through this stage or this is just part of her. We’ve noticed she seems to be going through many of the developmental stages she should have had by this point. She’s gone through putting everything in her mouth, constantly taking her socks off, trying to take her diaper off all the time, wanting to be held all the time, eating everything or nothing (depends on the week), etc. What gets confusing is that she’ll be going through several different stages all at once and we never know how old to treat her. I don’t know how long it will take her to balance out a bit, but until then she’s keeping us on our toes. We’ve made HUGE progress on sleeping and it’s been almost a week since she’s kept us up at night and she seems resigned to the fact that we’re going to make her go back each time. Now we’re focusing on getting her to stop touching everything (everything!) and getting her to call Philip ‘Daddy’ instead of ‘Papa’ (who in our family is actually Philip’s father).

She and Kasia had their first Thanksgiving last week and both seemed to enjoy it. Neither had any idea what we were celebrating, but neither complained about having cranberry sauce and pies! My mom sent the kids stuff to make turkeys out of rice crispy treats and various candies and we wondered how we were going to explain to Leeza that she was supposed to be trying to make a turkey, when I doubt she’s ever seen one. Hers ended up looking more like an alien, but she was very proud of it and it still tasted great. As we prepare for Christmas we’re hoping we can explain this holiday a little better!

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Katya

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While we were in Ukraine we had the chance to meet kids in other orphanages, one of whom was Katya. She lives aout an hour out of the city in an orphanage that is pretty much forgotten except for some missionary groups that work with them in the summer and the Ferdon’s who come every Saturday. She’s 14 years old and in the 6th grade and showed up at this orphanage about a year ago. She has 2 siblings, but she has no idea where they are anymore. She lived with her mother for most of her life, but did not attend school because she had severely crossed eyes. Her mother managed to teach her to some reading and writing at home. When we met this young girl she was shy, never made eye contact and rarely said much.

Through the persistence of another lady who got to visit the same orphanage, Katya received corrective eye surgery last month. She stayed with the Ferdon’s for a week during the treatment and had the chance to live in a healthy, Christian household during that time. They bought her a couple needed outfits, paid for a cell phone since she was alone while in the hospital, bought her food for her hospital stay (food is not provided in the hospital), medicine and some glasses with corrective lenses. After her procedure they were able to put up new pictures of Katya and I honestly did not recognize her. A quote from one of the people who saw her right after really sums it up…

‘She has NEVER liked having her picture taken. On Saturday when we saw her it was the first time I have ever seen her with her head held high and talking, laughing and having a good time with people. It’s been such a boost for her confidence.’

Katya’s treatment will have several stages as her eyes strengthen and she will need to return to the Ferdon’s at least 3 more times for her to see a doctor. They are hoping she can stay in their house the whole time for each of these treatments and the first will be in December.

I’m writing about Katya because rarely do we get to hear about older orphans and what they are facing. Katya will age out of the system in a couple years and will be left pretty much on her own. This surgery is truly a miracle for her and provides the possibility of a more normal life for her…one in which she will hopefully be able to provide for herself, continue her education and be accepted in society. More importantly, in my eyes, it gives her the opportunity to live in a Christian home during her treatment and will hopefully plant seeds that will grow into true faith in Jesus some day. The Ferdons’s have paid for all of her needs so far, but have asked others to pray about helping them with the expense. They are a missionary family from the US who live incredibly frugally in Ukraine and this was not a budgeted expense. It cost $500 for Katya’s first visit and they are expecting the rest of the visits to cost another $500 total. They are also requesting prayer for her as she heals from her surgery and continues the needed treatments (she will go through a series of corrective glasses that will help her eyes focus).

If you feel led to help Katya I would be happy to get you in contact with the Ferdon’s.

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Thankful for Sunshine

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Busy. We’ve been very busy. Not so much with lots of things to do, but every day takes a lot of energy just to do our normal tasks. We’re getting better at our new routine, but until our crowd is a little older (and a few are out of diapers) life is just going to be a bit hectic. Despite the busyness, life is good. We are learning about Pilgrims in school, learning new songs in Sunday school (Leeza only knows 2 words, but she sings them VERY loudly), learning how to use the potty, how to stay in bed until 7am, how to put on our own shoes and coats and how to chew with our mouths closed. Kasia is trying very hard to learn to walk and Josiah is surprising me daily with the new words he can read and write. Grace is my little helper in the kitchen and Leeza is learning new words every day. She can now almost sing the whole ABCs and can count to 9 in English. We’re having a few English sentences pop up every once in a while and she surprised us all when she blurted out ‘thankful for sunshine’ in the car the other day when it peeked out for a few minutes on a rather dreary day.

Just to keep things interesting, we took all 4 kids to the attorney’s office this morning to sign papers for Leeza’s readoption here in the states. She is already legally adopted, but we’re going through this so that she will be a US citizen instead of just a legal immigrant. We’ve learned that the paperwork is the same as if we had adopted her from the US, so it’s full of stuff asking the judge for permission to adopt her and change her name and let her live with us…all of which has, obviously, already happened. We will need a home visit from a social worker and possibly a judge so that they will ‘grant’ all this for us. Our court date is set for December 23rd so it looks like our Christmas gift will be having all 4 kids be Americans. :)

We get a lot of questions about medical stuff, so here’s what we have coming up…our MRI session will be Dec. 10th, we’ll be meeting with a spina bifida specialist March 3rd and sometime between those two we’ll probably meet with Orthopedics, PT and OT. After the visit on the 10th we may have a better idea of when her back surgery will happen.

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