Sunday, October 28, 2012

Special Visitors

I was a bit tired after our trip to PA last week. But, we did make it to Sunday school and church on Sunday. Trips or company or pretty much anything that changes Mariah's schedule is tough on her. Her life was turned upside down this past week. But, we will survive.
On the bright side, the fevers are now gone. What a mystery! Now I am wondering if there is an ear infection brewing for Mariah. She keeps sticking her finger into her right ear. When I asked her tonight if it hurt, she said yes in her typical very agreeable high-pitched voice. She will say yes to almost anything though. Just makes me curious. She has woken in the middle of the night a few times the past two weeks. She was crying then stopped. I don't believe she ever fully woke and went back to sleep. 

We will know for sure on Monday. She and Kyle have regular check-ups at the pediatrician's office. Mariah needs to get another immunization since she is a little behind. We choose to only do one at a time. I'm sure we will not have a happy camper. 

This past week we had some special visitors. Grandma and Pap Kaminski came for a visit. We don't get many visits from them since they take care of Grandma. So this was special. I remember so well what it was like when my mom was taking care of my grandparents. We didn't have visits for a couple of years. It is tough on everyone but we completely understand and love that we see our parent's honoring their parents. What an example to us. I still have so much to learn from our parents.

Grandma and Pap left Pittsburgh at 4:30am and arrived here at 8:40am, just in time for breakfast! After all the hellos were said, school began. I tried to have a free day but I wasn't able. School was happening in the basement and Pap used my dining room table as a temporary office. He was studying for his Sunday message. Jeremy must have sneaked this picture because it sure wasn't me. 
Poor guy didn't even move my Chinese tea set from his work space. I just came home from PA with that last week and it made it to my dining room table. Now to find room for it!

Our kids love when Grandparents come to visit. Grandma Kaminski gets conned into making French Toast every time they visit. Mariah is not super crazy about sweets but she did enjoy almost a full slice of French Toast. Notice her bedhead too.
We had a really nice couple of days with them. Here is a picture of Mariah having a story read to her by Pap. 
She insisted on the Steelers blanket. I think Grandma and Pap were a little surprised at how much energy she has. She sits still for maybe two seconds.....maybe. She is a girl on the move!

It was sad to see them leave but we will see them in just a few weeks. 
We went shopping after Grandma and Pap left and when we came home, we found Mariah like this....
A few adoptive families are in my prayers as they struggle with many issues. This is definitely a journey that does not have a destination. It is a journey that continues to change and often times has unexpected twists and turns. 

The family with a little boy at Mariah's orphanage is still waiting to make another trip to China. Their sweet son was transferred to Beijing and had heart surgery this past week. He is recovering and the family is praying to be granted permission to travel within the next two weeks. Please pray for the Tucker family as they overcome even more obstacles. Their story is nothing shy of amazing and heartbreaking. Many have heard their story and one child received life-saving surgery as a result of the Tuckers. You can read their story  

This particular family is so close to my heart since Ethan is from Mariah's hometown in Jiangsu. 

Blessings to you all!!

Monday, October 22, 2012

First Visit to Pennsylvania!

This week marked the first visit for Mariah to Pennsylvania. We were not sure how it would go but we had a doctor's appointment for Ben and we did not have a choice. We loaded up the car on Thursday morning and hit the road at 8:12am. Above is what I saw when I turned around to see what she was up to. Mariah removes her socks and shoes within minutes. Then evidently she sucks on her toes! YUCK!!!!

Then just a few minutes later we saw this....
This is a huge improvement from the screaming we usually hear in the car. She did great!

Then at about 10:45am we saw this welcome and familiar site....
Almost home! I think I will always call Pennsylvania home. To me, it is. Lots of "firsts". First tunnel ride in the United States.
Once we came through the Fort Pitt tunnels we saw the beautiful city of Pittsburgh.
This picture does not do this site justice. I especially love coming through the tunnels at night. It is a breathtaking site.
Closer still. About 45 minutes from my parents' house. Exit 70C......279 North.

We pulled in the driveway at 11:30am and we were greeted with my parents then my dad's brother, Uncle John, came up from next door. I fixed lunch for the kids, gave my mom instructions and we loaded up to take Ben to Pittsburgh Children's  Hospital. This was Mariah's first babysitting experience.
Here is Ben in front of the awesome train display set up close to the urologist's office. Photos are a bit blurry since I only had my cell phone. The appointment was a much needed answer to prayer for Jeremy and me. This office was unbelievable! They were kind, patient, and understanding. Dr. Schneck was awesome to Ben and took time to show Jeremy and I the scans from previous hospitals. He assured us that Ben is fine! Isn't God good? We really believed he was fine but one hospital was ready to remove his kidney and talk about cancer treatment. Ben's kidney "mass" is just a calyceal diverticula! It only requires follow-up yearly by ultrasound. There could be complications in the future but that is rare. We were so relieved. 

As it turns out, Dr. Schneck knows Mariah's urologist....Dr. Rink. Evidently they went to school together. He was so humble and told us that Dr. Rink is much more accomplished than he. Talk about humility. He assured us that Dr. Rink is the best.

Jeremy's mom and dad wanted to go to Pittsburgh with us. It was really nice to have some family there just because they care and love us. 

We made it back to my parent's house for supper at 6pm. Mariah didn't even seem to notice we had gone. Later that night, my sister and her family stopped to spend a couple of nights on their way back from Washington, DC. 

Rebecca and cousin Sarah.
Mom playing with Mariah.
Dad playing with Mariah.
Mom's China shelf. One of three.
While there, the son's-in-law helped my dad split wood for their coal furnace. So as expected, they enlisted the help of the grandchildren. Here is Mariah making her way to the woodpile.
It was a long walk!
Several of the kids hard at work.
I assure you, Jeremy and Abbie were not the only ones working, although this picture would lead you believe they were alone.
It wasn't all work. Rebecca and Abbie put two swings on one hook.
We finished up the work at my parents and after Mariah's nap headed to Jeremy's mom's and dad's for a family get-together. Since Jeremy's grandma lives right in front of Jeremy's parents, we stopped by to have Mariah meet her Great-Grandma. 
She is a little unsure, but it doesn't take long. Mariah puckered up and gave Great-Grandma a kiss and hug. It was so sweet. 
She also had some love to give to Grandma Kaminski!
That evening, Grandma Kaminski had a great bonfire/cookout with the family. We had a little bit of trouble keeping her away from the fire. 
Aunt Mary and Uncle George came down for the family get together.
Pap was just being silly.
We enjoyed the time spent in the country. There is nothing quite like it. Now, if Jeremy's phone would stop ringing. 

Our pictures came back from the photographer. I will leave with just a few of the beautiful pics that Christi took.

This is pretty much how Mariah views life. She LOVES her Daddy!!!!!!! This is one of many reasons why I love this man. He will do anything for our family! He'll even go to China! Isn't this picture priceless?
Our Rebecca is such a great big sister. We tried so hard to get Mariah to smile that day. She refused a nap and when I got her ready, she was a bit grumpy. Check out the look on her face!
Mariah was having a tough time even sitting in the leaves. She arched her back an absolutely refused to sit in those leaves. I think part was her "grumpies" but I really believe she had never sat in leaves before and was very unsure.
We are looking forward to another great week. Loving the prospect of more family coming for a visit!

Sunday, October 14, 2012

Humbled, Blessed, and Overwhelmed

Honesty is always the best policy, right? Let me be transparent for a few moments. After hearing from so many family, friends, and strangers how great it is that we have adopted our sweet girl, I began to believe those statements. It is really hard not to let those statements affect how we feel. I would catch myself almost agreeing with comments being made. After all when you live in our small town there are not many minorities. We hear things like "How lucky she is!" and "How great it is what you did for her!" 

We attract quite a bit of attention everywhere we go. We truly only followed what God laid on our hearts many years ago. Truth be told, we probably should have begun this process a few years sooner. But like stubborn children, we said "not now!" After all, we already had four children. We got comfortable. God got our attention.

I began to be convicted of my somewhat self-righteous attitude. The Lord began to work in my heart and I was quickly reminded that we are only Jeremy and Jeanine. We hold no degrees. We do not wear designer clothes. We work hard and rarely take vacations. We do not drive new cars. We take pride in what we have been blessed to maintain. Of course, it is not ours to have. It is all the Lord's. We are special in the fact that we are God's children.....period!

As I sit in our bedroom waiting for Mariah to settle for her nap, I get my Bible out and I have my quiet time with the Lord. Yes, it is in the middle of my day. Ideally early morning would be best, but again our schedules have been upended since bringing Mariah home. So this time works out well for me. Plus, our Mariah gets to see me open my Bible. I pray she will have early memories of Mommy reading her Bible while she is lying in her crib.

My devotions have been in Matthew. I fully understand God's providence in this now. I've been reading about Jesus' short ministry here on this earth. I have read these Scriptures many times before. However God just dropped this on my lap the other day. I was absolutely amazed how many miracles Jesus performed each day. He cast out demons, healed a withered hand, made lame walk, healed a woman who was sick for 12 years, raised the dead, and countless other miracles. He had to be so tired. Then when Jesus did retreat, the crowds followed. He never turned them away.

I feel exhausted after my days here at home. We have chosen for me to stay home with our children. We homeschool our children and the bulk of that is on my shoulders. Jeremy comes to the rescue on Fridays and takes over and has a photography class with the kids, a gym class of sorts, and science experiments. Most days I love it. Some days I am ready to collapse after putting Mariah in bed for the night. Then I read all that Jesus did each day. How did He have the stamina? How do I have the right to complain? 

I'm including a few pictures from our homeschool week. This year we are studying "Rome to the Reformation" and my kids are loving it. We have learned how the Romans were excellent builders and developed the first concrete and how ingenious they were with regard to their construction and use of the aqueducts. I was welcomed to our school room with a drawing of the aqueducts.
Then on Friday, with Daddy, the kids used pudding boxes and made wedges and built an arch and Jeremy explained how strong that design is and how important that method was to the Romans. He also explained how it is still used today.
I took a phone call Friday from Mariah's endocrinologist. We had our second round of blood work come back and he called to explain a few things to us. He originally put her on really high doses of steroids because the ultrasound showed her adrenals were quite enlarged. He said that he needed to give her a dose that would make her adrenals rest for the very first time ever and hopefully shrink to normal size. Her numbers came back much better. Original blood work showed her levels eighty-eight times the acceptable level! They are now within normal limits and we can lower the dose.

I realized this week as I read my Bible that it truly is a miracle that our baby is even here. Mariah's life has been preserved. God protected her. Our endocrinologist shared with us that Mariah does in fact have the most severe form of this and is not able to retain sodium. If you see her with a salt shaker in hand......please know it is just fine. She needs it! While in China, and shortly after we returned home, we caught her licking us. She would even lick our clothes. 

Many of the other parents I have connected with have told me that our Mariah likely did not have the salt wasting form of this disease. Logically, I thought they were right. Every article or book I have read states that these children do not live past the first 30 days of life untreated. Mariah has defeated those statistics and survived 20 months! God has shown himself to me in so many ways. 

He is giving Mariah the "Future and Hope" that we read about in Jeremiah 29:11. 

I'm not sure why, but we have been called to deal with unbelievably difficult health issues with our children. Why does God feel I am strong enough to handle these medical problems? Quite simply, I'm not. I really am so inadequate. So many days I feel defeated. But we do our best. Jeremy is always that shoulder for me to lean on and cry. He has strength when I do not. God is our rock and ultimate strength.

A year ago during one of Ben's MRIs we were sort of knocked off of our feet. This routine checking of his repaired tethered spinal cord and Chiari Malformation also revealed a "mass" on his left kidney. The red carpet was rolled out for us that day and we immediately knew something was very wrong. After discussions with specialists and an ultrasound then a ct scan, this children's hospital wanted to do a biopsy and prepared us for a partial nephrectomy (kidney removal). After consulting with the entire team they cancelled the biopsy telling us it was too risky.

We then went for a second opinion at another hospital. At first, this hospital agreed with the previous hospital and was prepared for surgery. Then it was decided (after an hour and a half renal ultrasound) the mass was either a cyst or renal caliceal diverticula. Unfortunately, this doctor was a bit arrogant and we were not treated well. Clearly the two hospitals were on completely different ends of the spectrum. We also know it was very possible that God intervened and heard the many cries of this Mama and healed our precious child.

Ben's endocrinologist believes it is now time we get another opinion. We have been referred to a doctor in Pittsburgh. We truly are not overly concerned but there are questions that remain unanswered. 

I'll leave with pictures from our beautiful day at Butcher Family Farms, just a few miles from our house. We also still have a little one with a fever. Just today it was 101.0 and she has a cough.

Enjoy the pictures! Here we is very typical in our house that the girls are ready before the guys!
Micah not thrilled with the photo op.
 This was the best we could do at the straw house.
 Family pic!
 Kyle sporting his new black and gold bands on his braces.
 Mariah and me on the hay bales.
 Mariah running into Micah's arms!
 Our Fabulous Five!!!

Sunday, October 7, 2012

A Low-Key Week

Finally a week of no appointments! That says a lot for our family right now. I know that will soon end but we did enjoy the time at home.

This week was the premiere of The Avengers here at the Kaminski house. We have quite a keen interest in these new movies and for the most part, they are pretty clean. As usual, Jeremy did his editing magic and the little bit of language and the few innuendos are now gone! The movie has quickly become a favorite in this house full of testosterone! I also have to admit that us girls are quite fond of them too. 

Here is a little video that Jeremy and the kids had fun putting together back in April. I do love this family!!!!
We have had so much progress with our sweet Mariah. She loves on us all, she sleeps well, she understands almost everything we say. Then we see a few signs of her history. In the picture just below, I was cleaning up the kitchen and turned around and thought she had eaten all of her cheese curls. Then I noticed this.........
She had taken all of her remaining cheese curls and hid them in her shirt.  I guess old habits die hard. 

Just so you all understand, this child eats anything and absolutely everything. We are trying to figure out if she is eating everything due to her low sodium and she is seeking that or just that she is going through phases that she was never able to experience living in an orphanage. When she starts licking my arms or face, it is time for some salty snacks! This picture below is what she does when finished with her meal. She literally licks her plate clean.
Friday was a rather interesting day. Jeremy was home and he did his regular classes with the kids for school. He has them do phys ed, then he began a photography class with them. Notice how impressed Ben was with this week's lesson...
Oh, I almost forgot. Notice the Pack N Play in the background? That was a new purchase. Mariah is so overwhelmed with our schoolroom that we had to find something to keep her safe and entertained. It is supposed to be a fun place for her but she is not always happy in it. We turned to see her the other day and she had her left foot on top of the rail and she was ready to crawl right out. She will obey when told "no", so for now it works.

Mariah had a difficult day. Of course, we had pictures scheduled later that day. I finally got her settled for her nap but then realized she was still up. I don't believe she ever fell asleep. This made for an interesting photo session.

Our next door neighbor's daughter has picked up photography on the side. After we came home with Mariah, Christi offered to take our pics for us as a gift. How sweet was that? Friday was the chosen date. Christi drove in from Columbus just for our pictures. We took our camera for just a few pics but Christi did a much better job with a much better camera. Here is a little of the "pouty" face that Mariah had for almost the entire photo shoot.
I am sure Christi caught much better pictures and probably even got a few with a sweet-looking angel. I was standing to Mariah's left here trying to get her to smile.

Then Jeremy was being goofy and said something silly to Becca and got this reaction....
Here is Kyle on the bars at the park where we had pics taken.
And we certainly cannot forget Micah. 
Again, Christi, we hope you didn't mind our pathetic attempt to take pictures with our little camera. Thank you from the bottom of our hearts for doing this for us. Eli was such a sweetie too! And your mom.....we love her!

Not a whole lot else to post for this past week. I still have not heard from Mariah's new doctor. I'm not worried, just feel held captive to my house phone. I don't really want to take that call on my cell when I'm out and about.  Not knowing when the call will come is tough.

We should know how Mariah is doing on her new medication. Her labs were drawn over a week ago. I'm pretty sure we still have some adjusting to do. 

Mariah thinks she has out-smarted us. When we give her the medicine (three times a day) in her applesauce, she has wised-up to us. She now knows there are pills in that applesauce. The first couple of spoonfuls are plain applesauce. I can see her trying to find those pills. Then eventually she does. She gives us this look and then crunch! Mariah thinks she has fooled us and won the battle. The medicine is very bitter. She just doesn't realize that we win either way. Either she swallows it with the applesauce, or she chooses to crunch away.......we still win! 

Here is our sweet Becca reading to Mariah! For some reason I don't think Mariah was very impressed.
As I drafted this blog post I received and email regarding my lack of creativity while blogging. I apologize to anyone who feels this way. I never claimed to be creative. I honestly do not blog to see how many hits I get on my site. I blog for one be able to give our sweet daughter a history.

I am amazed that there are people in Greece, France, Latvia, and a few other countries reading my blog. I blog to encourage others who may be considering adoption and to keep our families included in our lives.

I am not at all upset over the email. I just want everyone to understand that I am a mom of five kids that has a passion. That passion is to raise my kids in partnership with my adoring husband in the way that God leads us. I am madly in love with my husband of almost 17 years. I pray that our passion to love and honor Christ is evident especially as I attempt to create this history for Mariah.