photo update

Latest Look At Maxim's Feet - Do They Appear to Be Regressing to You?
Compare to the May 3 and February 27 Posts


Building a Fort in the Living Room With Joel


Hardhat In Place for the Big Job

Countdown and Concern

We are enjoying the summer thoroughly. I continue to be amazed at how productive our little raised garden beds have been so far. Certainly, some plants have not yielded what I would have hoped (spinach and peas), but we have tasted the incomparible first fresh homegrown tomato (cut in six wedges so everyone could enjoy), lots of yummy leaf lettuce and some beautiful red potatos have been poking up so I had to bring in more soil to keep them covered for the rest of their season.
The corn has tassles on it already but is not as tall as we would like to see, so I'm not sure how truly productive each stalk will be; time will tell.

Tomorrow is the big day for Joel and Brina, auditioning for various music programs in the area.

Brina continues to pursue fiddling and homeschool orchestra and is now hoping to join the local youth symphony. She and I are also working on some violin/piano pieces we can share at church or Sukkot soon.

Joel is hoping to become part of a jazz/big band ensemble which graduated three trumpeters last year and he's is also considering the local youth symphony.

Cyan is preparing a dance to present at Sukkot in a couple of months. Sorry if I have posted this before, but I'm so excited for her. Her grace in movement has really changed over the last year and she can concentrate more on the worship words she hears in a particular song and how to move to it, instead of working so hard to just keep her balance.

Meanwhile Maxim is into a regular routine now with weekly physical therapy and continuing to stretch in his command of English. The physical therapy is not easy for him, but we do the stretches every day at home too and I do notice a difference in his flexibility. He has definitely regained a good bit of his previous trunk strength and can sit up much straighter without support. We are encouraged that he will consistently get all the way up on all fours and crawl rather than moving on his belly everywhere as in the past.

The whole family is counting down the days until we are on our way to Washington State. Just thirteen more days. We of course love love love our family and friends in Michigan but if you are a household with loved ones far away, you understand the feeling. Time with the distant ones, when you can achieve it, is precious.

Our time between now and the trip is absolutely packed. The auditions as I mentioned before. I have some dental work to get completed. Brina is hopefully getting her braces off either this Thursday or next. I have a couple more Sabbath school preschool classes to teach (if you've never tried this, go for it; these little kids are both sweet and challenging) as well.

As you know, the specialist who did Maxim's hip reconstruction is now scheduled to do surgery on his feet on September 11. The plan is to remove the talus from each foot, as I've described before, possibly transfer some tendons, and fuse what is left into the best position possible. The closer we get, the more uneasy I feel about this plan. Not a matter of whether I trust the doctor and her team. It's a matter of how once those bones are removed, there is no going back. The testimonials of others who have experienced similar treatments are not always encouraging. So, I am doing everything I can to get educated on alternative approaches that are not invasive but can encourage Maxim's feet into continuallly better position. I have spoken to several Rolfers (sorry I'm not sure how to do a link, but look this up on the Web; very interesting) and also to a local acupuncturist. We have the opportunity to consult with both types of practitioners next week before we leave for the West Coast. Both of these approaches are based on philosophies of healing that have been around for thousands of years and I do see some encouraging testimonials regarding both as they relate to clubfoot.

Since the specialist we have been seeing feels from her own understanding that the next step is surgery and she is not planning any more casting to improve Maxim's foot position, it makes sense to me to pursue anything else we can that will continue his progress without surgery. Why rush into the surgery simply because it's the specialist's "last card to play" as far as Maxim's feet go? My gut says look for all other options first and then if bone removal is truly necessary, we'll at least know we left no stone unturned.

When you are parenting children with special needs, it is often a challenge to explore everything you can do for them while maintaining family balance and not tearing yourself apart if you later realize you could have done something different.
I guess all parenting involves some second guessing of self and some "hindsight is 20/20" revelations along the way. When your special needs child is also adopted and needing to catch up because of early life neglect, the parental sense of urgency is heightened. So I am finding that I have to be careful to balance wanting very much to help Maxim catch up to his peers however possible as soon as possible, with the very real need to take our time with medical decisions so we make the right choices. When he is already seven years old, after all, a couple of extra months to explore options is not a terrible thing.

Does any of this make sense to you readers? I covet your prayers as Daniel and I press on in Maxim's care. I would love to hear from those of you who read this blog because of your own journey related to clubfeet. What have you attempted and found success with?

Milestones

Sunday, July 19 was Maxim's seventh birthday, his first as a United States citizen. It was so much fun anticipating it with him, although I'm sure everything will make much more sense next year.

He often told people he was meeting for the first time "Maxim seven soon". For weeks, he was looking forward to the "rainbow cake" Brina said she would make for him. He knew there would be gifts and the happy birthday song he had heard sung to other children from time to time.

The big day arrived. Brina got up extra early, a really big deal for her, especially on a weekend, and started making the cake. She used a basic white cake recipe but divided the batter and tinted each portion a different color. Then she put them back together, barely blending them at all, and baked two layers. Next came the frosting, just cream cheese frosting tinted yellow. I had completely forgotten about candles but Brina spied some in the kitchen cupboard.

While the finishing touches of multi-colored sprinkles were put on the cake and plates and forks set out, Maxim stayed with Daniel at the computer watching games.

Finally everything was set and we brought Maxim to the table to see his cake, with the candles lit. He blew every one out after about five tries and we all enjoyed Brina's handiwork together. She really does make delicious desserts.

Afterward, Maxim enjoyed opening his gifts. All of the teens had picked out different things for him. Brina found a starfish made out of something that expands when set in water, so Maxim will enjoy watching that grow. Cyan found him a set of beach toys that are all Thomas the Tank Engine themed. Joel purchased a Mr. Potato Head set that is Bumble Spud, inspired by the Transformers. G'mo and Bubeleh (my parents) sent a Harry the Dirty Dog book, several classic stories on DVD, and a generous monetary gift. Grandpa and Grandma bought Maxim a little yellow toy Porsche ( he loves any yellow car), a yellow truck, a really nice toy boat, and also gave a generous gift for his bank account. Thanks to each of you for your thoughtfulness. It really was a nice day for Maxim. He especially enjoyed playing with his boat in the tub and watching the stories on DVD while sitting in his Elmo armchair which shakes and giggles.

An interesting twist to the day was that it also included a memorial service for a man named Roy Avery. There were such wonderful testimonies from various family and friends of what a truly unique loving and loved man he was. Hard-working, steadfast in faith, compassionate, unswerving, helpful, faithful. Qualities I hope to see in both Joel and Maxim as they become men.

God spoke to me during that service. During the instrumental music presentations, He spoke to me over and over, "she is healed" and I knew He was referring to my daughter Cyan, who has cerebral palsy. Then during the next set of music, I was prompted not to doubt, not to wonder what someone would say if I told them out loud Cyan is healed. Just say thank you to the Father and I will see the fruits of His promise. Say thank you for what He has already told me is true and then I will see the evidence. And have the courage to not only believe what He told me but proclaim it to others and ask them to thank God for healing Cyan.

During the remainder of the service I heard some speak of how Roy Avery was not the kind of person to back down on what he knew to be true. The thought that others might think him crazy for what he believed and proclaimed did not stop him from walking out what he believed and wearing his faith big and bold on his shirt-sleeve. It all came together as a witness to me to not shy away from saying out loud what God just shared with me. So after we got home, I asked Daniel if we could have a family meeting and I told them what happened.


I believe Cyan is healed and I will thank the Father for it. I hope others will too. Sometimes, we have to just take Him at His word, believe it and the evidence comes later. I'm hanging on to that. This is not a cop-out but I just want to say that I accept what I heard from God yesterday, without doubt. Promises have been proclaimed to His people many times that they had to wait to witness fully. Christ was proclaimed King and fit everything that had been prophesied about Him, yet He didn't fit the "mold" that others had in mind for the Messiah. Many things had to materialize for people to believe and many still don't.

Like one of those inexpensive little children's drawing sets where you tell the child to color everything in but the marker does not appear to be accomplishing anything. As a parent you insist that the child trust and keep coloring every space. Then you set it out in the sun, and only later after that exposure to the sun do all the colors appear. The picture really is complete. God walks with us as we keep coloring and from time to time He says okay now stand back and watch this. That's where I feel we're at with Cyan. We have been coloring and coloring and now, exposed to the Son, we're going to see the picture. The catch is we have to thank Him constantly before we even see the picture, not just when it's actually unveiled. I know this is very wordy and maybe sounds like complete gobbledy gook to some. That's okay. Just thank God for what He has already done. Thank Him for what He is doing right now. Thank Him for what He will do. Know that healing is available through Christ (Yeshua). He is able. For Cyan. For Maxim. For all who are in need of healing. For you.

Happy Birthday to You, Maxim. You are blessed and a blessing.

Diagnosis, Hope and Transformation

Well, the genetics appointment was pretty calm cool and collected yesterday. I thought we might be late since the freeway has some areas under construction and there were also emergency vehicles making their way ahead of us. However, although we were indeed seven minutes late, it all worked out fine.

Dr. Toritelli, the genetics specialist, felt it was only necessary to observe xrays she already had of Maxim and see him in person for a short time in order to conclude the diagnosis of arthrogryposis. I have a lot to learn about this disorder, but it's basically an umbrella term for bundles of weakness, malformation and/or dislocation of the muscles and joints which may or may not be genetic. In some cases, the disorder stems from lack of sufficient room to move in the womb and in some cases it does indeed have a genetic basis. She felt it was unnecessary (and I agree) to go through actual blood work and testing at this time to determine the cause of Maxim's arthrogryposis. She says if Maxim wants to know for sure someday, for the sake of any future children, whether or not his particular case is due to a genetic disorder, he may choose to do the testing then and frankly the genetics testing will be so much more sophisticated by then, we'll probably get more answers in the long run. It is just satisfying to get the definite label and know that this is not a progressive disease of any kind. Like Cyan's cerebral palsy, this results in certain weaknesses and challenges but it is not going to get worse and a lot of progress can be made through surgeries and therapies.

Right after our appointment with Dr. Toritelli, we zipped down Michigan Avenue in Grand Rapids to Dr. Reinhart's office so she could get a good look at Maxim in his new brace. She tweaked it a little so his right leg is pulled out to the right a little further, wanting to make sure the top of his femur sits in the hip socket more securely. He will remain in just this brace (24/7 except for toilet, bathing, and swimming) until September 1, when they will again cast his feet and lower legs in preparation for the September 11 surgery.

Keep praying for God's divine moving and softening of Maxim's feet. I believe a lot can happen between now and the planned surgery.

I was reading an article recently by Ken Burns, the very talented historian and film maker. He was talking about the National Park system in the United States; how breathtakingly beautiful each park is and what a special gift it is that several people who came before us thought to preserve these areas so all people could continue to enjoy them. One comment that struck me is that Mr. Burns felt that when one takes the time to visit these areas and takes several days (even weeks) to explore and observe, it is a life-changing spiritual experience. He felt that by spending concentrated time in such beautiful places, away from all the frenzy and distraction of typical American life, one's very molecules are even reordered, it is that intense. It's like becoming someone new because of where we've spent that time.
I will write more about this on my other blog (www.onedaughteroftheking.blogspot.com) but in conjunction with the appointments this week, it just left me pondering how mighty our God us to give us reminders all around us in His creation of who He is and that He is able. He is our Fortress, our Refuge, our Comfort, our Healer. Through time spent with Him, wherever that may be, we really are transformed, physically and spiritually. He sees Maxim's need and in His hands, anything really is possible. For Maxim. For Cyan. For you. Rest in that. Press on in that.

More Appointments Tomorrow

It's hard to believe the appointment with the genetics specialists is tomorrow already. This appointment was set up by Dr. Reinhart months ago and seemed soooo far away.

We will arrive at the clinic in Grand Rapids at 8:30 a.m. and expect to be there at least an hour. They will probably send us somewhere for additional blood work as well. The whole point is to find out if the club feet and other joint issues evident in Maxim are the result of any genetic disorder. It is apparently not unusual for club feet and other things to come in clusters and they like to track causes so hopefully future generations can benefit. If we find that Maxim's problems have a genetic root, it won't change how we deal with it but he will have information valuable to him in the future.

From that appointment, we will go straight to Dr. Reinhart's office right down the street so she can see Maxim in his new brace and better evaluate the proper focus for his therapy.

He did have his first physical therapy appointment this past Thursday. We were surprised to see that the doctor's prescription specified the brace could not be removed during therapy even. However, Shelly the therapist gave some really valuable advice and instruction on how to support one area of Maxim's body while stretching another. Maxim handled it really well which was a relief since he has been a little more argumentative lately. Really testing his boundaries and struggling with the fact that children have to obey parents and not vice versa. Debbie, another blogger, shared some wonderful insights about this very issue at www.jerdebwalker.blogspot.com. I really appreciated another parents perspective in this same scenario.

We have yet to get Maxim out to Lake Michigan. The time that he is allowed to be out of the brace is limited so we have limited him, so far, to just playing in the tub when he craves water play.

From those of you who have dealt with extremely underweight adoptees, I would really like to hear your input on what you did nutritionally to help build them up.

We are especially excited to be going out to Washington State next month. We always really enjoy spending time with family there and this year will be even sweeter because Maxim will be meeting everyone out there for the first time. My dad will have just finished his rounds of radiation ( he has handled it remarkably well and is staying super active and upbeat)too, so that adds to the blessing of getting to go there this year. One icing on the cake, as well, is that we will finally be able to meet the Walker family. They live about an hour and a half from my parents and adopted two children from the same orphanage Maxim was at. When they adopted their son in 2007, they took a lot of pictures although this was greatly frowned upon and shared them with the adoption agency later. It was one of their photos that allowed us our first glimpse of Maxim. So, you see, we really must meet them face to face, don't you think?

Maxim in America - the Blessed of the Blessed

Today, everyone in the extended family had the day off since tomorrow is Independence Day, also known as the 4th of July. America's so-called birthday. We enjoyed hamburgers and hot dogs with all the fixings at Daniel's parents' place and Maxim finally enjoyed the tractor ride with Grandpa he's been hoping for, now that the body cast is a thing of the past. Cousins shot nerf-type rockets up in the air, tossed baseballs back and forth, rode Uncle Brian's go-cart around the farm and down the dirt road and just enjoyed each other's company. Aunt Carolanne, who was recently hospitalized again due to colitis was up on her feet and able to enjoy the festivities too. There is nothing like family together. We don't do it nearly enough.

Really interesting to contemplate as we celebrate the holiday with Maxim for the first time.

Things I may not have noticed before strike me intensely this year because of our experience overseas during Maxim's adoption, as well as different things that have transpired since the election of our new president last Fall.

In Ukraine, where Maxim was born, they have only been independent of outside rule since the early '90s. After release from the former Soviet Union, certain freedoms were achieved but at a great price. The Soviet Union was extremely orderly. Parks were precisely designed and well maintained. Now they are run down, with the pools emptied of any water and the fountains turned off. Public and government buildings are slowly falling apart because there are no funds dedicated for their up-keep. A large number of stray dogs run wild, sometimes in dangerous packs, because there are no longer any dog catchers. In general, families have only one or two children and both parents work full time (very long hours, often far from home), while the babushkas (grandmothers) raise the children.
Stadiums, once the pride of the Soviet Olympic training system, stand silent. Many people we spoke to admitted there is such corruption in their government, they don't really expect any of this to change, so it's everyone for himself. Overall, people do not trust their leaders or each other. Freedom from the Soviet Union was achieved but no one knows what to do with it. First hand accounts from former slaves in our country indicate not all knew what to do with the freedom handed to them after the Civil War. Scripture tells us the Israelites didn't handle their freedom from Egypt so well in many ways. Maxim is no longer tied to the Ukrainian orphanage system, which is wonderful, but he still needs boundaries. Daniel and I are entrusted with the task of teaching him certain boundaries so the freedom he has been blessed with will actually be enjoyable and beneficial.

Here in the United States of America, we are uniquely blessed. Not because we are such great people, but because God is God. Long ago, He made promises of blessings and cursings to those who would obey or choose to disobey His ways. The blessings were promised to multiple generations. In short, we have what we have in great part because of choices made by those who came before us. Yes, our choices make a difference in our own personal lives, but I think we have forgotten to be thankful for the fact that many of those who came before us were obedient to God's ways to the best of their ability and we are reaping the benefits. We have forgotten that the choices we are making now are not supposed to be focused only on what we can attain and achieve but on what effect we may have on future generations.

This country is not perfect. We all know that. However, maybe we have individually and nationally been so focused on ourselves at times that we don't realize how abundantly blessed we are. Take a look at this quick comparison with Ukraine.

In America, you can call 9-1-1 and someone will come to help you, quickly and efficiently, eith few exceptions. There is no such system in Ukraine. In fact, if you are not willing/able to immediately pay the ambulance driver whatever they feel like charging at a given moment, forget calling for help at all.

In America, if you're lost, you can flag down a policeman and he'll actually assist you and want to help you on your way. In Ukraine, people do what they can to avoid the police if at all possible due to fears from the past and knowing that there is still great corruption. The thought that a policeman might be someone to seek out in time of need is mind-boggling to them.

In Ukraine, people don't seem to smile very much. We were told that people who "smile too much" are viewed as completely stupid or suspicious.

Our nation has an amazing system of roadways, libraries, public universities, medical facilities, national parks, etc., which afford every single citizen opportunities for constant new learning, exploration, pleasure, safety and education.
Yes, we sometimes treat each other poorly and need to re-learn some basic etiquette in getting along, but we are sooooooo incredibly blessed.

If you are an American yet believe that as such, you have somehow been completely cheated in life, I hope Maxim, who became a citizen of this great nation just a few months ago, doesn't meet you anytime soon. You see, through his eyes, this place is still amazing. To him, trash trucks are beautiful. When he sits in his booster seat in the van and surveys all the things we pass as we drive through town, it's all positive to him. He doesn't care that many "more mature" people wouldn't want to be a trash man and look down on those those who are. He just sees this terrific vehicle that comes down the street, lifts and empties each dumpster and whisks the trash away. He doesn't care that the bright yellow house is in a rundown, questionable part of town. He just sees a house that is his favorite color and hopes he can live there some day. He thinks all things really are possible.

Ukraine has beauty and weakness. America has beauty and weakness. Both are full of faults. But by God's grace, this really is the "land of opportunity". We experience it today because someone before us recognized that fact and tended the freedoms wisely. Someone treasured the resources we have and carefully nurtured and multiplied them. Someone taught their children to be polite, faithful and hard-working and those children taught their children. Someone prayed, took good care of their possessions and were quick to lend a hand to those around them. Someone thought of those generations coming up behind them and tried to leave their little corner of the world better than they found it.

Happy birthday America! Appreciate what you have and tend it well. Pray to discern what is broken and what is not. Fix what is truly broken and vehemently protect what is not. Acknowledge sin and turn from it. Acknowledge God in all you do and He will direct your paths. What better Director could there possibly be.

Maxim, it will be your birthday soon. May you continue to see the blessings all around you and be a good steward of each. Give God all the credit and honor for the opportunities that come your way. It is truly His hand that has brought you to this land and to this family. Welcome to America!

God's Encouraging Hand

We have really seen God at work already since Maxim's cast came off on the 30th, just two days ago. Although we are still amazed at how truly shrunken his legs are right now due to such prolonged time in casts, he has a long way to go in catching up to some semblance of normal body weight (he is even swallowed up in 2T pants right now), and he has lost some of his great upper body strength because the cast did all the work for him the past 6 1/2 weeks, we have so much to be encouraged by.
He has not required more than the typical tylenol or motrin for the expected joint pain. He has not needed any at all since 3am today and it is now 1:30pm. Although he is fragile when lifted and we have to be really careful not to bump his hip or legs, he actually rolls over and will get up on all fours and move a little on his own.

When the cast came off, I think I mentioned they put a foam piece between his legs to keep them somewhat apart until his new brace is ready, expecting it would take until at least the 20th. Well, I called Mary Free Bed Orthotics, where we have been many times in working with Cyan's CP over the years and they were able to fit Maxim in for measuring yesterday afternoon. At first the woman at the front desk said it could still take quite some time to receive the actual brace due to frequent delays with our particular insurance companies. She said that neither company is good about giving approval over the phone. However, by the end of the day yesterday, we not only had the phone approval from both insurances, but a confirmation that if we didn't mind driving to Grand Rapids again, we could have the brace TODAY! It is ready now. So that's where Maxim and I are headed right after Brina's orthodontist appointment this afternoon. What a whirlwind, but soooo encouraging.

Dr. Reinhart did not intend to prescribe any physical therapy until the brace was ready, so we are now two weeks ahead of the game. I called her office to let her know the brace is ready and she immediately faxed a prescription for Maxim's therapy to begin ASAP at our local hospital's rehab department. Very exciting. These are people that have worked with Cyan a lot over the years too, so we already have a good trusting relationship with them.