One day, Joel was making deviled eggs. Maxim was watching and asked what they were. Joel said "These are deviled eggs". Maxim, who has been listening to a lot of Sesame Street ABC videos, thought they were called "W" eggs and so he still calls them that.
I went a couple of weeks ago to see how they cast Maxim's legs. I helped him by holding his hand and telling him it would be okay while they worked on his legs. Many years ago, I had to have my legs casted too; for correcting my feet and legs because of my cerebral palsy. So I kind of know how Maxim feels sometimes.
Sometimes, I am tired of cerebral palsy. I think Maxim will get tired sometimes too, of his disabilities. I hope that he understands the casts will be good for him and I hope that anyone who is out there will read this and will pray for him. Maybe seeing Maxim's road will help other people believe in God better.
Sunday, March 22, 2009
Sunday, March 15, 2009
Wow, how fast time is flying! Into the second half of March now. The older I get, the faster every year seems to pass. Makes me want to learn how to savor everything fully and properly. Haven't mastered that yet.
I'm trying to acknowledge the reality of this coming week without getting overwhelmed. Someone has an appointment every single day except Friday. Cyan's dentist says it's a good idea to consult with someone about maybe removing wisdom teeth now since they are growing forward on their sides just as mine did, but their roots are just buds yet. That's tomorrow. Brina has another adjustment at the orthodontist on Tuesday. Just a few more months to go with that and she will be free of her braces. Maxim heads back to Dr. Reinhart on Wednesday for another casting.
Thursday, I have my annual check-up. Good to stay up on that. We moms spend a lot of time, effort and love tending our families and can easily forget or put off taking care of ourselves in the blur. Don't make that mistake.
The casting is still going well but the doc did give me a reality check this last week that wherever he plateaus with progress in the casting is where they will set his feet surgically, if I'm understanding correctly. So as much as I hate seeing him have to be in casts on and on, every additional casting means his feet are into a little better position and his chances of getting up and walking sometime in the future are a little more likely. Maxim has never once complained about his casts. It always hurts some as they stretch his feet each week but once the latest set of casts is on, he just takes off at whatever he wants to do and doesn't let them hold him back. He is persistent and that will be a blessing to him for sure, just like it has been with Cyan and her cerebral palsy. Yes, wanting to be doted on from time to time but usually craving independence too. This morning, Maxim needed to use the bathroom and usually one of us will carry him in and get him all set and then he calls us when he is finished. However, this time I set things up in the bathroom so he could try climbing onto a bath chair we took out of the tub and set by the toilet, holding onto a bar we installed on the wall there for Cyan. Everything was placed right next to the toilet so I watched to see if he could get him self up onto the chair and from there onto the toilet seat. I stayed there and coached him not only where to put his hands for the best leverage but also to avoid using inappropriate things like the actual toilet seat as his handles. It took him a few minutes but he figured it out and then got himself down afterward as well. He was so proud that he called Papa to come in and see what he had accomplished. I think Daniel was afraid Maxim wanted to show what had been achieved inside the toilet; he was pretty hesitant to go in there. Anyway, this is one of the things I am hoping to balance; showing Maxim how to do things for himself as much as possible while also cuddling and loving and helping him in ways he has missed all his life. There are some people who promote the idea of really babying newly adopted children to varying degrees, even encouraging them to go back to babyhood for a time, but I can't see it. No offense to those who choose this route, and maybe it depends on the emotional scarring in a particular child, but I think there is also something to be said for loving a child like crazy while gently encouraging them to move forward in life. None of us can go back and do things over. If we try too hard, we miss living the present in the best possible manner.
Today was so beautiful out; in the low 60's and sunny. Friday was also very nice. I took all of the kids to a park called Van Raalte Farm, less than a mile from the house. It's a park with wetlands, walking and cross-country ski trails, a terrific sledding hill, all on property that once belonged to a doctor who was an original settler in the area. In the spring, it's just a delightful place to go for fresh air and stretching out if you don't have a lot of land of your own. So we headed over there and introduced Maxim to rolling on the hill. Maybe someone else does this too, but we've never witnessed it. Sometime during the day, when chores and homework are done, or we just know we need to blow off steam, we go over and walk Sydney, our Australian shepherd and we go rolling on the hill. Maxim couldn't quite tackle this because of his casts being at the angle they are, but he loved being out there and it was a pleasure to see him hustle around on the grass (and yes some slightly muddy spots too) and get nice and dirty. He really loves being outside and there was just something sweet about coming home and seeing that his pants and his jacket desperately needed to be washed. He got to just thoroughly enjoy being a child that day. He loved the playground too, with it's multiple slides and a tunnel to climb through.
Today, Brina spent quite a bit of time outside with Maxim, digging in the dirt with beach toys and shovels, drawing with chalk on the pavement, and taking him for a wagon ride through the neighborhood (she said he sang most of the way).
Several months ago, I recorded a harmony on our digital piano for an arrangement of "Twinkle Twinkle Little Star" that I was toying with as an intro to something else I'm working on. I had kind of forgotten about it until this last week. A few days ago, I sat down at the piano with Maxim and helped him play the melody with his index finger while the recorded harmony was playing. He wanted to do that over and over. I think in time he will really enjoy learning to play for himself.
Passover is just three weeks from this coming Tuesday, and we are looking forward in a special way since my sister Heidi is coming to spend that time with us. It's been a long time since she's been able to come our way and I haven't seen her since the fall of 2007. Wish their whole family could come but I know it's not practical. Can't wait for some together time. My girls, who are fifteen and seventeen, still made the charts where you "x" off days until the thing you're looking forward to comes. And of course, Maxim will get to meet another relative who has been anticipating and praying for him for a long time. I'm sure they will like each other a lot.
Please keep praying for those families who are still in various stages of the adoption process. Every step toward it and stage during it is in need of prayer saturation. Debbie, I'm thinking of you and Ola, hoping you will be back home this time next week and enjoying settling in under the same roof with the rest of your family. Hang in there.
I'm trying to acknowledge the reality of this coming week without getting overwhelmed. Someone has an appointment every single day except Friday. Cyan's dentist says it's a good idea to consult with someone about maybe removing wisdom teeth now since they are growing forward on their sides just as mine did, but their roots are just buds yet. That's tomorrow. Brina has another adjustment at the orthodontist on Tuesday. Just a few more months to go with that and she will be free of her braces. Maxim heads back to Dr. Reinhart on Wednesday for another casting.
Thursday, I have my annual check-up. Good to stay up on that. We moms spend a lot of time, effort and love tending our families and can easily forget or put off taking care of ourselves in the blur. Don't make that mistake.
The casting is still going well but the doc did give me a reality check this last week that wherever he plateaus with progress in the casting is where they will set his feet surgically, if I'm understanding correctly. So as much as I hate seeing him have to be in casts on and on, every additional casting means his feet are into a little better position and his chances of getting up and walking sometime in the future are a little more likely. Maxim has never once complained about his casts. It always hurts some as they stretch his feet each week but once the latest set of casts is on, he just takes off at whatever he wants to do and doesn't let them hold him back. He is persistent and that will be a blessing to him for sure, just like it has been with Cyan and her cerebral palsy. Yes, wanting to be doted on from time to time but usually craving independence too. This morning, Maxim needed to use the bathroom and usually one of us will carry him in and get him all set and then he calls us when he is finished. However, this time I set things up in the bathroom so he could try climbing onto a bath chair we took out of the tub and set by the toilet, holding onto a bar we installed on the wall there for Cyan. Everything was placed right next to the toilet so I watched to see if he could get him self up onto the chair and from there onto the toilet seat. I stayed there and coached him not only where to put his hands for the best leverage but also to avoid using inappropriate things like the actual toilet seat as his handles. It took him a few minutes but he figured it out and then got himself down afterward as well. He was so proud that he called Papa to come in and see what he had accomplished. I think Daniel was afraid Maxim wanted to show what had been achieved inside the toilet; he was pretty hesitant to go in there. Anyway, this is one of the things I am hoping to balance; showing Maxim how to do things for himself as much as possible while also cuddling and loving and helping him in ways he has missed all his life. There are some people who promote the idea of really babying newly adopted children to varying degrees, even encouraging them to go back to babyhood for a time, but I can't see it. No offense to those who choose this route, and maybe it depends on the emotional scarring in a particular child, but I think there is also something to be said for loving a child like crazy while gently encouraging them to move forward in life. None of us can go back and do things over. If we try too hard, we miss living the present in the best possible manner.
Today was so beautiful out; in the low 60's and sunny. Friday was also very nice. I took all of the kids to a park called Van Raalte Farm, less than a mile from the house. It's a park with wetlands, walking and cross-country ski trails, a terrific sledding hill, all on property that once belonged to a doctor who was an original settler in the area. In the spring, it's just a delightful place to go for fresh air and stretching out if you don't have a lot of land of your own. So we headed over there and introduced Maxim to rolling on the hill. Maybe someone else does this too, but we've never witnessed it. Sometime during the day, when chores and homework are done, or we just know we need to blow off steam, we go over and walk Sydney, our Australian shepherd and we go rolling on the hill. Maxim couldn't quite tackle this because of his casts being at the angle they are, but he loved being out there and it was a pleasure to see him hustle around on the grass (and yes some slightly muddy spots too) and get nice and dirty. He really loves being outside and there was just something sweet about coming home and seeing that his pants and his jacket desperately needed to be washed. He got to just thoroughly enjoy being a child that day. He loved the playground too, with it's multiple slides and a tunnel to climb through.
Today, Brina spent quite a bit of time outside with Maxim, digging in the dirt with beach toys and shovels, drawing with chalk on the pavement, and taking him for a wagon ride through the neighborhood (she said he sang most of the way).
Several months ago, I recorded a harmony on our digital piano for an arrangement of "Twinkle Twinkle Little Star" that I was toying with as an intro to something else I'm working on. I had kind of forgotten about it until this last week. A few days ago, I sat down at the piano with Maxim and helped him play the melody with his index finger while the recorded harmony was playing. He wanted to do that over and over. I think in time he will really enjoy learning to play for himself.
Passover is just three weeks from this coming Tuesday, and we are looking forward in a special way since my sister Heidi is coming to spend that time with us. It's been a long time since she's been able to come our way and I haven't seen her since the fall of 2007. Wish their whole family could come but I know it's not practical. Can't wait for some together time. My girls, who are fifteen and seventeen, still made the charts where you "x" off days until the thing you're looking forward to comes. And of course, Maxim will get to meet another relative who has been anticipating and praying for him for a long time. I'm sure they will like each other a lot.
Please keep praying for those families who are still in various stages of the adoption process. Every step toward it and stage during it is in need of prayer saturation. Debbie, I'm thinking of you and Ola, hoping you will be back home this time next week and enjoying settling in under the same roof with the rest of your family. Hang in there.
Friday, March 6, 2009
Full Tilt and the Latest Look
Ever have one of those days - I mean ooooooone of thooooooose days? With the school year continuing at full tilt and added running for Maxim, there is definitely an increase in time on the road.
Last Wednesday, Maxim was scheduled as usual for the re-casting process. They were also planning to do the hip pull where they would put Maxim's right hip in temporary traction during an x-ray to better evaluate the best plan for that particular issue.
Wednesday is also a day full of band and orchestra practices and piano lessons. So the kids and I all hopped in the van at 8 a.m. and headed for the Homeschool Building in Wyoming (a town about twenty-five minutes from home between us and Grand Rapids). I pulled into the parking lot there, Brina going right into orchestra practice and the rest of us finding an empty table at which to tackle other homework.
At 10:30, I left the older three there, having made lunch arrangements for them and knowing that during Maxim's appointment, they would be well occupied with either continued music practices or homework assignments yet to be finished. So off Maxim I went in the van. We pulled into the doctor's parking lot with a couple of minutes to spare, Maxim having taken the prescribed valium dose thirty minutes prior. As I reached into the van to lift Maxim from his seat, I spied Joel's trumpet in the back seat. My mind began to spin. I was the one who had suggested that Joel leave it locked in the van until he really needed it at 11:30, so it wouldn't be taking up unnecessary space at our study table on a typical Wednesday morning. Without even thinking, we had done the usual and now here I was with Joel's trumpet, needed in less than an hour, with Maxim about to go into a 1 1/2 hour appointment, minimum. Yes, I had just given Maxim the painkiller, but I also had Joel getting ready for his last practice before the District Festival, scheduled for Thursday.
I carried Maxim into the doctor's office, sheepishly explained my dilemma, and they were able to reschedule him for Thursday morning at 11:15. We then raced back to the Homeschool Building and delivered Joel's trumpet to him just in time for practice. He was so relieved. He said he had been praying that I would notice it there in the van.
I noticed during those hours after the valium dose, Maxim didn't not seem any different, so I hoped it would actually make a difference on Thursday, to help him relax for the hip pull as intended.
After, piano lessons were complete and a good moms visit at the same time, we were home by about 5:30. Long day.
Thursday arrived and after a little more calm early morning, we were all in the van again, except Brina who wasn't feeling well. The plan was to take care of Maxim's recasting and hip pull, and then go to District Festival to cheer on Joel's band and others participating.
Maxim was not afraid at all this time as the green casts came off. He had already planned that the third casts would include yellow on one side and orange on the other, and that's what he asked for.
Once the casts were off, the hip pull was completed within minutes and we were back in the casting room. During the pull, which the doctor had implied could be quite painful, Maxim had obviously hurt but was not overwhelmed. During the casting of his right foot/leg, however, he cried with gusto. Poor little guy. Earlier, when I had mentioned to Dr. Reinhart that I didn't see a great difference with the prescribed painkiller, she suggested I give Maxim some of the children's tylenol in my purse. Once this kicked in on top of the prescription, he was very relaxed during the casting of the last foot.
We finished the appointment with plenty of time to drive to Grandville High School where the District Middle School/ High School Band Festival would take place. It is an honor to be a part of and a great opportunity for all of our home schooled musicians to be critiqued by skilled judges. Joel's band ended up with a rating of "I", which is the best you can achieve there and this gives them the opportunity to now go to State Festival in April. Good job!
Yesterday, we were already back at Dr. Reinhart's office for another re-casting, as no other large enough time blocks were available later in the week. Each time we go, she looks at the position of Maxim's feet and continues to evaluate and ponder the best approach as time goes on.
Yesterday, she commented that maybe taking care of the right hip first would be most beneficial. This will be seriously considered after the MRI on April 2 to see how much cartilage he has there.
Dr. Reinhart also said the re-casting will continue weekly until they see progress reach a plateau. As long as the feet are continuing to improve in position, they will keep doing it. If Maxim's feet plateau sooner than hoped for, the doctor says the only thing they can do surgically is called a tailectomy (sp?), which is considered a "salvage measure"; sort of a "there's nothing else we can do for you" measure. In other words, PRAY. God knows the plans He has for Maxim and he also knows that Maxim desires to walk. We are trying to make the most of help available while learning also to put our true trust and hope in the actual Great Physician.
Maxim has been taking the initiative to pray all by himself over the last week and it basically a long thank you list. Wonderful to listen to, since he lists everything from pizza to cars to Grandpa, and if something comes to his mind more than once, he thanks God for it each time. The other day, he thanked God for Cyan three times in one prayer.
Maxim is not awake yet this morning, but later today I will take a picture of him again with his latest colors (red and blue), along with pieces of the casts that were removed yesterday. Wouldn't want you to miss what a little rainbow he has been these last few weeks.
Last Wednesday, Maxim was scheduled as usual for the re-casting process. They were also planning to do the hip pull where they would put Maxim's right hip in temporary traction during an x-ray to better evaluate the best plan for that particular issue.
Wednesday is also a day full of band and orchestra practices and piano lessons. So the kids and I all hopped in the van at 8 a.m. and headed for the Homeschool Building in Wyoming (a town about twenty-five minutes from home between us and Grand Rapids). I pulled into the parking lot there, Brina going right into orchestra practice and the rest of us finding an empty table at which to tackle other homework.
At 10:30, I left the older three there, having made lunch arrangements for them and knowing that during Maxim's appointment, they would be well occupied with either continued music practices or homework assignments yet to be finished. So off Maxim I went in the van. We pulled into the doctor's parking lot with a couple of minutes to spare, Maxim having taken the prescribed valium dose thirty minutes prior. As I reached into the van to lift Maxim from his seat, I spied Joel's trumpet in the back seat. My mind began to spin. I was the one who had suggested that Joel leave it locked in the van until he really needed it at 11:30, so it wouldn't be taking up unnecessary space at our study table on a typical Wednesday morning. Without even thinking, we had done the usual and now here I was with Joel's trumpet, needed in less than an hour, with Maxim about to go into a 1 1/2 hour appointment, minimum. Yes, I had just given Maxim the painkiller, but I also had Joel getting ready for his last practice before the District Festival, scheduled for Thursday.
I carried Maxim into the doctor's office, sheepishly explained my dilemma, and they were able to reschedule him for Thursday morning at 11:15. We then raced back to the Homeschool Building and delivered Joel's trumpet to him just in time for practice. He was so relieved. He said he had been praying that I would notice it there in the van.
I noticed during those hours after the valium dose, Maxim didn't not seem any different, so I hoped it would actually make a difference on Thursday, to help him relax for the hip pull as intended.
After, piano lessons were complete and a good moms visit at the same time, we were home by about 5:30. Long day.
Thursday arrived and after a little more calm early morning, we were all in the van again, except Brina who wasn't feeling well. The plan was to take care of Maxim's recasting and hip pull, and then go to District Festival to cheer on Joel's band and others participating.
Maxim was not afraid at all this time as the green casts came off. He had already planned that the third casts would include yellow on one side and orange on the other, and that's what he asked for.
Once the casts were off, the hip pull was completed within minutes and we were back in the casting room. During the pull, which the doctor had implied could be quite painful, Maxim had obviously hurt but was not overwhelmed. During the casting of his right foot/leg, however, he cried with gusto. Poor little guy. Earlier, when I had mentioned to Dr. Reinhart that I didn't see a great difference with the prescribed painkiller, she suggested I give Maxim some of the children's tylenol in my purse. Once this kicked in on top of the prescription, he was very relaxed during the casting of the last foot.
We finished the appointment with plenty of time to drive to Grandville High School where the District Middle School/ High School Band Festival would take place. It is an honor to be a part of and a great opportunity for all of our home schooled musicians to be critiqued by skilled judges. Joel's band ended up with a rating of "I", which is the best you can achieve there and this gives them the opportunity to now go to State Festival in April. Good job!
Yesterday, we were already back at Dr. Reinhart's office for another re-casting, as no other large enough time blocks were available later in the week. Each time we go, she looks at the position of Maxim's feet and continues to evaluate and ponder the best approach as time goes on.
Yesterday, she commented that maybe taking care of the right hip first would be most beneficial. This will be seriously considered after the MRI on April 2 to see how much cartilage he has there.
Dr. Reinhart also said the re-casting will continue weekly until they see progress reach a plateau. As long as the feet are continuing to improve in position, they will keep doing it. If Maxim's feet plateau sooner than hoped for, the doctor says the only thing they can do surgically is called a tailectomy (sp?), which is considered a "salvage measure"; sort of a "there's nothing else we can do for you" measure. In other words, PRAY. God knows the plans He has for Maxim and he also knows that Maxim desires to walk. We are trying to make the most of help available while learning also to put our true trust and hope in the actual Great Physician.
Maxim has been taking the initiative to pray all by himself over the last week and it basically a long thank you list. Wonderful to listen to, since he lists everything from pizza to cars to Grandpa, and if something comes to his mind more than once, he thanks God for it each time. The other day, he thanked God for Cyan three times in one prayer.
Maxim is not awake yet this morning, but later today I will take a picture of him again with his latest colors (red and blue), along with pieces of the casts that were removed yesterday. Wouldn't want you to miss what a little rainbow he has been these last few weeks.
Tuesday, March 3, 2009
Green Legs and Ham
Modelling green casts and the Thomas Tank Engine blanket, a gift from our friend Jamie. I dare say Maxim has stolen her heart. Thank you Pam for your beautiful work, as usual, on the blanket. It is already one of Maxim's favorite things.I can't believe we have come through the second week of casting already. Maxim has slept wonderfully, found ways to do everything he desires despite the extra weight to lug around and if there have been any bumpy spots in attitude at all, I can safely say they haven't had a thing to do with the process he is going through to correct his feet.
Last week, he chose green for his casts. Joel is determined to sign every set Maxim has to wear, so he is sporting big brother's signature as I write.
As we go through the days, Maxim is of course picking up on more language and definitely notices when we are talking about him, so we have to be sensitive to not making him feel uncomfortable that anyone would discuss him in any way that he can't understand. He is so comical sometimes, both intentionally and unintentionally, that the others are frequently running to each other to report the latest antic. For example, today Joel was making devilled eggs at lunch time and Maxim was observing from his chair, which Joel had positioned nice and close. As he worked, Maxim watched every detail and wanted to know what these interesting items were called. Maxim is absolutely convinced now that they are called W eggs. Onion rings are onnun dings. Tacos are thank yous. It is hard not to laugh sometimes, and Maxim is quite a ham who revves right up for drama if he knows he has our attention. However, I don't want him to ever feel mocked as he tackles this new language or other challenges ahead.
Last night, at meal time, Maxim asked if he could pray by himself. Understand when I say this that all he did was put his little hands together in a typical prayer position and ask "Maxim?"
I said yes. He said, "Dear Gah, tankooo Mama, Papa, Joel, Cy--------anna (Cyan), Beeta (his version of Brina), Lamma (his version of Grandma), Lampa (his version of Grandpa), Anya, Valya, Dada (last three are the people we stayed with in Kiev), machinas (Russian for cars), Ninny (his version of our dog Sydney), Jesus name, Amen.
Daniel is travelling a lot for work since Maxim came home. Just part of the territory right now since there have been so many layoffs. He is an electrical engineer by experience rather than degree. He has worked for the same company since 1984 and we have been so blessed to have such consistency. He has worked there in many capacities which is a good thing right now. At the moment, they need him on the road frequently since the majority of service guys are laid off. Going to various plants to help set up or trouble shoot machines he programmed is not unusual overall but now that responsibility is spread between far fewer guys. Anyway, this week Daniel and his dad are working over in Ontario, Canada. Maxim often asks where Papa is and when I tell him "business", he just sighs, puts his hands on his hips and says, "Again?" Yup, that's life right now. No complaining here, though. To have consistent work and income is never something to take for granted.
Tomorrow, Maxim will have the green casts removed and new ones constructed within minutes afterward. At the moment, he is leaning toward asking for yellow.
Dr. Reinhart also intends to do something called a hip pull to try to manipulate Maxim's right hip into a more correct position. She anticipated that this will be difficult and possibly quite painful so wrote a prescription for a carefuly set dose of a valium-type medicine to relax Maxim beforehand. May we actually experience and recognize peace straight from the Father.
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