Such a goofy kid! Be sure to keep scrolling as I have posted several blog entries this evening. There will be more to come, so stay tuned!
Wednesday, March 26, 2008
Down but not out. . .
Joshua has proven over the past month that nothing can get him down. Although he has been sick and consequently miserable, he still manages to charm us all with his beautiful smile and his charismatic personality. A few days ago the kids were all in the playroom when I heard them all start laughing. I came into the room to find Joshua entertaining them all with his infamous "noises" as demonstrated in the following video (you will notice also, that poor Evan has become one of Joshua's favorite "toys"):
TV Time
I am ashamed to admit that, in the past few months, my kids have probably watched more television/movies than they have in the course of their entire lives. While I am certainly not proud of plopping my children in front of the TV so much, it has had its benefits. For example, Evan has learned the alphabet and how to count to 15 from watching Sesame Street. And I would've never been able to snap the following, ADORABLE, pictures if Joshua was not hopelessly addicted to Curious George. . .
All About Evan
Lest anyone think we have forgotten about Evan, this blog entry will be entirely devoted to him and all of the wonderful progress he is making as the newest member of our family!
Evan is such a bright spot in our lives! His 1000-watt smile just grabs you and reels you! He is adjusting so well to his new life that, at times, it is hard to believe that he hasn't always been here. While he is very happy to have a new mama and papa, he is even happier about having siblings! After spending 3.5 years lying in a crib, listening to all of the other kids play in the next room and likely wishing he could be there too, he is finally able to be right in the middle of all of the action and he absolutely loves it! Although he is not able to physically do everything that Maren, Lukas and Jacob are doing, he is happy and content as long as he is with them, even if all he is doing is observing. Up to this point, Evan and Joshua have shared a bedroom and he has seemed content with that. However, a few days after coming home from the hospital with Joshua, he started asking me what Lukas and Jacob were doing as I put him to bed (he can hear them talking and laughing through the walls). It was obvious to me that he wanted to be in there with the boys, so last night Richard bunked the boys beds and we moved Evan in with Jacob and Lukas. They boys were so excited to welcome Evan into "the club" and I am happy that he is able to be in there with them rather than having to listen to them through the walls. . . he has had to do that enough in his life already.
I am a very firm believer in integration and I try my hardest every day to integrate Evan into all of the activities that the other kids are doing (bathing with them, sitting at the table to eat, playing with toys or in the backyard, coloring, reading, etc.). Because he still relies 100% on me for his mobility, that can be tiring, but having witnessed the progress that comes from being able to be a part of the group, it is worth every minute of my time and every ounce of my strength! It is just amazing to see how he has flourished over the past few months!
The day we took Evan from the orphanage, one of his caretakers said to us, "He has a beautiful mind and is very smart, his body just doesn't work." Over the past few months I have witnessed for myself what a beautiful mind he has. While I believe that all of my children are smart, I can honestly say that Evan is one of the smartest kids I have ever met. He has been home for three months and already speaks amazing English. His expressive and comprehensive language are impressive. While it is, at times, still difficult to understand him (especially when he is excited), it is just amazing how much he has learned in such a short time. Not only is he smart, he is also very determined (and very stubborn). I really feel like there will be nothing he cannot accomplish if he puts his mind to it.
Smart, determined, stubborn, funny and also very loving and caring. He hates to see others hurt or upset and is always the first to tell you it will be okay if you are having a tough time. He loves to gives hugs and kisses too! Needless to say, I enjoy taking advantage of huggy, kissy, snuggly nature!!
Not all has been peaches and cream. We have had our struggles over the past few months. Our biggest struggles have been with input (eating) and output (constipation), but we are slowly working our way through those issues. In the orphanage, Evan got most of his nutrition from pureed, watered down food fed to him in a bottle with a large hole in the nipple. He also ate a lot of bread and cookies. Consequently, he hasn't been very open to trying a lot of new foods up to this point. Bread, bagels, muffins, pancakes, rolls, biscuits, dry cereal, pbj sandwiches, pretzels, cookies and baby food (generally only fruit) are among the only things he will eat. He is finally starting to eat off of a fork which is fantastic and occasionally he will broaden his spectrum of what he will allow in his mouth, so we feel like we are slowly making progress.
Medically speaking things are coming along quite nicely as well. We are well into physical and occupational therapy now. We just finished fitting him for his hands splints which he will officially start wearing next Tuesday. He is sitting for longer periods of time and is even able to kneel (when placed in the kneeling position) while leaning against something (usually the couch). He will be having surgery on April 10th to correct his clubbed feet. He will be in casts for several months following his surgery and then he will have surgery to help with the contractures in his knees. Hopefully he will be able to start working on bearing weight in his legs by the end of the year.
All-in-all, Evan is doing exceptionally well and we absolutely love having him as part of our family! We are incredibly blessed!
Sunday, March 23, 2008
Quick update on Joshua
Well, it is already 10 pm and I have got to be up with the sun to take Evan to physical therapy in the morning, so unfortunately, I will not be able to publish my backlog of blogs this evening, but I did want to pop in quickly and give everyone an update on Joshua.
I wish I could report that all is well and that he is happy and healthy once again, but unfortunately, that is not the case. As Richard posted, we were released from the hospital around noon on March 11th. By late afternoon he had spiked a fever again. I took him to see his pediatrician first thing the next morning and we rehashed the entire saga from the very beginning. We poured over his chart, looked at every test result multiple times and talked about all of the different possibilities. We left the office with orders for more blood work and to call the doctor if his fever spiked over 101. By that evening he had been fever-free for 24 hours. He continued to be fever-free for almost a week. . .when suddenly he began spiking fevers again on Monday afternoon. That same day we received the results from the blood work that had been done the previous week. The results showed that his t-cell count (the white cells that make up your immune system) was still low (we ran the same test in the hospital). While they had increased slightly from his numbers in the hospital, they were still low enough that our pediatrician decided that we should have an official consult with the Infectious Disease doctor that we had worked with at the hospital (currently scheduled for April 1st). What exactly does having a low t-cell count mean? Well, unfortunately, all it really tells us is that his immune system is compromised and that something is, in fact, going on.
His fevers continued on Tuesday and Wednesday and, after speaking with the nurse who then spoke with the doctor, we were told to call if the fevers continued into Thursday. Of course, he woke up with a fever on Thursday, so we received orders to get more blood drawn and have an xray of the sinuses done. Late Thursday afternoon we received a call from the nurse that his xray showed that he did, in fact, have a mild sinus infection and so they immediately called in a prescription of antibiotics which we were to start that night, with orders to call them if, after 4 days, he was still having fevers. Well, we are on day 4 of the antibiotics and, unfortunately, his fevers seem to be heading up (103.6 at bedtime this evening) rather than out, so it looks like we will be making that phone call in the morning.
We have already done xrays, ultrasounds, blood tests, viral panels, respiratory panels, urine tests, CT scans and bone scans which all yielded very little information on what could be causing these persistent fevers, so our next step will likely be looking at his heart (one of the few places we have yet to look) and possibly doing a spinal tap (although the doctors seem pretty certain that this is not meningitis, viral or bacterial).
To say that this has been a bit unnerving would be putting it lightly. When this all began almost a month ago, he had RSV and a urinary tract infection and the fevers made sense. But those things went away and the fevers persisted with no explanation. When test after test yielded no answers and the doctors even started to become frustrated, it became a bit overwhelming and scary. When it seemed like his fevers might take their leave as mysteriously as they came, I was more than happy to send them on their way without further explanation. Had I known that they would simply be taking a brief vacation, I might have asked them to stay so that we could get to the bottom of this a bit quicker!
Underneath all of the unknowns, there is one thing that I do know and that is that Josh will be okay. We will all be okay. I have spent a lot of time on my knees praying for answers, praying for peace, praying for the doctors that are presiding over his care, and the spirit has most certainly witnessed to me that all will be well. Will he be miraculously healed? Maybe not. Will it take time to find answers? Most likely. But I have faith that all will be well in the Lord's time and that the answers and the healing will come. We have been blessed with an excellent team of doctors who are very skilled and very proactive and I know that, eventually, we will get to the bottom of this.
We appreciate the thoughts and prayers of all of our family and friends during this difficult time and hope that you all know that those thoughts and prayers are what lift us up and keep us going! Please continue to pray for our sweet boy and for the doctors who are working hard to find out what is causing his illness. We have witnessed many miracles in our lives as the result of prayer and know without a doubt that the Lord hears each and every one!
I wish I could report that all is well and that he is happy and healthy once again, but unfortunately, that is not the case. As Richard posted, we were released from the hospital around noon on March 11th. By late afternoon he had spiked a fever again. I took him to see his pediatrician first thing the next morning and we rehashed the entire saga from the very beginning. We poured over his chart, looked at every test result multiple times and talked about all of the different possibilities. We left the office with orders for more blood work and to call the doctor if his fever spiked over 101. By that evening he had been fever-free for 24 hours. He continued to be fever-free for almost a week. . .when suddenly he began spiking fevers again on Monday afternoon. That same day we received the results from the blood work that had been done the previous week. The results showed that his t-cell count (the white cells that make up your immune system) was still low (we ran the same test in the hospital). While they had increased slightly from his numbers in the hospital, they were still low enough that our pediatrician decided that we should have an official consult with the Infectious Disease doctor that we had worked with at the hospital (currently scheduled for April 1st). What exactly does having a low t-cell count mean? Well, unfortunately, all it really tells us is that his immune system is compromised and that something is, in fact, going on.
His fevers continued on Tuesday and Wednesday and, after speaking with the nurse who then spoke with the doctor, we were told to call if the fevers continued into Thursday. Of course, he woke up with a fever on Thursday, so we received orders to get more blood drawn and have an xray of the sinuses done. Late Thursday afternoon we received a call from the nurse that his xray showed that he did, in fact, have a mild sinus infection and so they immediately called in a prescription of antibiotics which we were to start that night, with orders to call them if, after 4 days, he was still having fevers. Well, we are on day 4 of the antibiotics and, unfortunately, his fevers seem to be heading up (103.6 at bedtime this evening) rather than out, so it looks like we will be making that phone call in the morning.
We have already done xrays, ultrasounds, blood tests, viral panels, respiratory panels, urine tests, CT scans and bone scans which all yielded very little information on what could be causing these persistent fevers, so our next step will likely be looking at his heart (one of the few places we have yet to look) and possibly doing a spinal tap (although the doctors seem pretty certain that this is not meningitis, viral or bacterial).
To say that this has been a bit unnerving would be putting it lightly. When this all began almost a month ago, he had RSV and a urinary tract infection and the fevers made sense. But those things went away and the fevers persisted with no explanation. When test after test yielded no answers and the doctors even started to become frustrated, it became a bit overwhelming and scary. When it seemed like his fevers might take their leave as mysteriously as they came, I was more than happy to send them on their way without further explanation. Had I known that they would simply be taking a brief vacation, I might have asked them to stay so that we could get to the bottom of this a bit quicker!
Underneath all of the unknowns, there is one thing that I do know and that is that Josh will be okay. We will all be okay. I have spent a lot of time on my knees praying for answers, praying for peace, praying for the doctors that are presiding over his care, and the spirit has most certainly witnessed to me that all will be well. Will he be miraculously healed? Maybe not. Will it take time to find answers? Most likely. But I have faith that all will be well in the Lord's time and that the answers and the healing will come. We have been blessed with an excellent team of doctors who are very skilled and very proactive and I know that, eventually, we will get to the bottom of this.
We appreciate the thoughts and prayers of all of our family and friends during this difficult time and hope that you all know that those thoughts and prayers are what lift us up and keep us going! Please continue to pray for our sweet boy and for the doctors who are working hard to find out what is causing his illness. We have witnessed many miracles in our lives as the result of prayer and know without a doubt that the Lord hears each and every one!
Happy Easter!
First and foremost, my apologies for the prolonged silence. I know that many of you have been waiting patiently for an update and I promise that it will be coming soon. To say that the past few weeks have been a bit chaotic would be an understatement, however, I have been working on several blog updates and hope to find a few minutes to sit down and finish them all this evening.
In the meantime, I know two, very cute little bunnies who would like to wish everyone a Happy Easter!
Unfortunately, my three other little bunnies hopped away before I could snap their picture! Stay tuned. . . there is much more to come!
In the meantime, I know two, very cute little bunnies who would like to wish everyone a Happy Easter!
Unfortunately, my three other little bunnies hopped away before I could snap their picture! Stay tuned. . . there is much more to come!
Tuesday, March 11, 2008
Discharged.
From Richard:
They just got discharged and they're headed home. Send Val lots of email so she spends the next seven days digging out.
They just got discharged and they're headed home. Send Val lots of email so she spends the next seven days digging out.
Could This Be The End?
From Richard:
Josh's temperature has remained stable since late Sunday, so they've said that if it does not spike again by this afternoon they're going to send him home.
Stay tuned...
R-
Josh's temperature has remained stable since late Sunday, so they've said that if it does not spike again by this afternoon they're going to send him home.
Stay tuned...
R-
Monday, March 10, 2008
Josh Update - Monday
From Richard:
Well - today went well I guess? The blood results came back with some elevated levels which means... there's something going on. But nothing to tell us what.
Josh had his CT scan and his bone scan today to look for any freakishly weird things. He was sedated for that and thus spent 3/4 of the day sleeping, and when he was awake he was too drugged to sit up.
No real news for tonight folks, sorry to disappoint. Oh - except the kids and I are alive and well. Yipee! Gotta go clean.
R-
Well - today went well I guess? The blood results came back with some elevated levels which means... there's something going on. But nothing to tell us what.
Josh had his CT scan and his bone scan today to look for any freakishly weird things. He was sedated for that and thus spent 3/4 of the day sleeping, and when he was awake he was too drugged to sit up.
No real news for tonight folks, sorry to disappoint. Oh - except the kids and I are alive and well. Yipee! Gotta go clean.
R-
Sunday, March 9, 2008
BLIZZARD!!!
Blogger decided to do pictures today, so here are some of them from the Blizzard of 2008.
Jacob, Lukas and Maren all prepped for snow time.
Kicking the snow around.
Using the lawnmower to "snowblow" the walk.
Even in the snow, they still want to ride bikes!
Weeeeeeeeeeee!
My mom walking Evan in the stroller, Maren making her rounds.
This is the edge of a cornfield near the house. I liked the way the drifts looked.
And my trusty Jeep, which provided diapers, food, and visits to see Val and Josh
Jacob, Lukas and Maren all prepped for snow time.
Kicking the snow around.
Using the lawnmower to "snowblow" the walk.
Even in the snow, they still want to ride bikes!
Weeeeeeeeeeee!
My mom walking Evan in the stroller, Maren making her rounds.
This is the edge of a cornfield near the house. I liked the way the drifts looked.
And my trusty Jeep, which provided diapers, food, and visits to see Val and JoshSaturday, March 8, 2008
Josh Update - Saturday (One Week Mark)
From Richard:
Josh was doing better on Friday, but not today. He's started to have cold symptoms again, and his fever once again spiked to nearly 106 deg.
At this point the assumption is that he won't be coming home anytime soon. This is mainly disappointing because the doctors still don't have any ideas as to what is going on. The plans for today included a CT scan, virus panel tests, and possibly a bone scan... Oh Joy!
Val has been staying at the hospital, but I delivered a laptop to her before I headed home prior to the storm hitting yesterday afternoon, so now she can surf the web and do email. For those interested, Josh is at Children's Hospital of Dayton.
Here at home the kids are doing pretty good. Having my mom come visit has been fun for them and relaxing for me. It's given me some opportunities to "deflate" and also allowed me to spend a little more time with Val and Josh.
But the best news is the WEATHER!!! We have already received a foot of snow, and boy do I love my snowblower! We got the kids bundled up this morning and they came outside and played for almost an hour while I used the snowblower. This afternoon I picked up Dave and we headed over to our old house to help dig out my tenant's car - which was buried in a snow drift almost 4 feet deep. The snowblower made quick work of that and then we went back to Dave's and cleared his driveway as well.
I had some pictures to add to this post but blogger was being crappy and wouldn't let me upload them. I'll have to add them later.
Josh was doing better on Friday, but not today. He's started to have cold symptoms again, and his fever once again spiked to nearly 106 deg.
At this point the assumption is that he won't be coming home anytime soon. This is mainly disappointing because the doctors still don't have any ideas as to what is going on. The plans for today included a CT scan, virus panel tests, and possibly a bone scan... Oh Joy!
Val has been staying at the hospital, but I delivered a laptop to her before I headed home prior to the storm hitting yesterday afternoon, so now she can surf the web and do email. For those interested, Josh is at Children's Hospital of Dayton.
Here at home the kids are doing pretty good. Having my mom come visit has been fun for them and relaxing for me. It's given me some opportunities to "deflate" and also allowed me to spend a little more time with Val and Josh.
But the best news is the WEATHER!!! We have already received a foot of snow, and boy do I love my snowblower! We got the kids bundled up this morning and they came outside and played for almost an hour while I used the snowblower. This afternoon I picked up Dave and we headed over to our old house to help dig out my tenant's car - which was buried in a snow drift almost 4 feet deep. The snowblower made quick work of that and then we went back to Dave's and cleared his driveway as well.
I had some pictures to add to this post but blogger was being crappy and wouldn't let me upload them. I'll have to add them later.
Thursday, March 6, 2008
Josh Update -- Thursday
From Richard:
Well - today was a step forward, but only in the sense that his fever has subsided a bit - I believe his highest temp up to this point today was 101. We're still awaiting the results of the most recent blood work, so there's still no indication of the root cause. If his fever continues to mellow out it's a good possibility he could come home sometime this weekend (but I'm not going to hold my breath.)
Fortunately many of our friends have been very helpful in a number of ways by babysitting, bring meals and more. Additionally, Val's brother Keenan helped out a lot by hanging out with the kids most mornings this week. My mom is headed here from Virginia tonight to spend the weekend and hang out with the kids, who have had a tough time with Val being gone. It's an 8 hour drive, but we appreciate her willingness to help out. It's easy to overlook the effect that this situation has on the kids here at home, so I focus on spending quiet moments with the kids when I can.
Surprisingly, the house is in great shape. Dishes are done and the laundry is all folded - I've developed a nice little routine that I follow each evening to keep on top of things.
As of this evening, the weather folks are calling for 6-8 inches of snow. But we'll have to see if that actually comes through.
Best wishes to all of our friends, and thank you for the positive comments.
Cheers-
R
Well - today was a step forward, but only in the sense that his fever has subsided a bit - I believe his highest temp up to this point today was 101. We're still awaiting the results of the most recent blood work, so there's still no indication of the root cause. If his fever continues to mellow out it's a good possibility he could come home sometime this weekend (but I'm not going to hold my breath.)
Fortunately many of our friends have been very helpful in a number of ways by babysitting, bring meals and more. Additionally, Val's brother Keenan helped out a lot by hanging out with the kids most mornings this week. My mom is headed here from Virginia tonight to spend the weekend and hang out with the kids, who have had a tough time with Val being gone. It's an 8 hour drive, but we appreciate her willingness to help out. It's easy to overlook the effect that this situation has on the kids here at home, so I focus on spending quiet moments with the kids when I can.
Surprisingly, the house is in great shape. Dishes are done and the laundry is all folded - I've developed a nice little routine that I follow each evening to keep on top of things.
As of this evening, the weather folks are calling for 6-8 inches of snow. But we'll have to see if that actually comes through.
Best wishes to all of our friends, and thank you for the positive comments.
Cheers-
R
Wednesday, March 5, 2008
Joshua Update - Wednesday
From Richard:
Sorry folks, still no good news. I just spoke to Val a few minutes ago and she said that Josh's fever had returned and his heart rate was over 200bpm (normal is 100-150).
This morning they re-did his chest x-ray and it was clear, they've also re-done his bloodwork but we have not yet received the results from it. From what we're told, the doctors don't have any good ideas of what's wrong. All of his systems seem to be functioning normally, yet his fever continues to be an issue.
At home, the rest of the kids are doing well with exception of Lukas who is having a terribly rough time with mom being gone and life being in flux. Lukas didn't do well with Val being gone for the adoptions either, so this is par for the course and I know pretty well how to help him (but there's no substitute for momma.)
Evan continues to get stronger and branch out into new activities. He's finally started to eat a greater variety of food - and I'm even able to get him to eat off a fork! Tonight he ate a complex meal of shepherd's pie and pear slices from a fork.
R-
Sorry folks, still no good news. I just spoke to Val a few minutes ago and she said that Josh's fever had returned and his heart rate was over 200bpm (normal is 100-150).
This morning they re-did his chest x-ray and it was clear, they've also re-done his bloodwork but we have not yet received the results from it. From what we're told, the doctors don't have any good ideas of what's wrong. All of his systems seem to be functioning normally, yet his fever continues to be an issue.
At home, the rest of the kids are doing well with exception of Lukas who is having a terribly rough time with mom being gone and life being in flux. Lukas didn't do well with Val being gone for the adoptions either, so this is par for the course and I know pretty well how to help him (but there's no substitute for momma.)
Evan continues to get stronger and branch out into new activities. He's finally started to eat a greater variety of food - and I'm even able to get him to eat off a fork! Tonight he ate a complex meal of shepherd's pie and pear slices from a fork.
R-
Tuesday, March 4, 2008
We're still alive... but Josh is in the hospital.
From Richard:
Josh has been in the hospital since Saturday evening. He is being treated for complications of RSV - namely a "fever of unknown origin." The doctors are also a bit concerned about his "wheezing" which he has had ever since we brought him home (and to our knowledge he's always had it.)
Val is spending days and nights at the hospital with Joshua and I'm focusing on taking care of the kids and keeping the house in order. I'm working in the mornings while her brother watches the kids and then coming home while the kids nap and then I put them to bed.
Not a whole lot of progress has been made in determining what's going on with him, but we're hopefully they'll get it figured out. At this point I think we'll be lucky to have him home before the weekend comes around.
Val does not have much access to the internet, so anyone wishing to contact her should call her on her cell phone.
Josh has been in the hospital since Saturday evening. He is being treated for complications of RSV - namely a "fever of unknown origin." The doctors are also a bit concerned about his "wheezing" which he has had ever since we brought him home (and to our knowledge he's always had it.)
Val is spending days and nights at the hospital with Joshua and I'm focusing on taking care of the kids and keeping the house in order. I'm working in the mornings while her brother watches the kids and then coming home while the kids nap and then I put them to bed.
Not a whole lot of progress has been made in determining what's going on with him, but we're hopefully they'll get it figured out. At this point I think we'll be lucky to have him home before the weekend comes around.
Val does not have much access to the internet, so anyone wishing to contact her should call her on her cell phone.
Tuesday, February 12, 2008
Progress
It is fascinating for me to look back at pictures and video of the boys from just a month or two ago and see how much they have changed and grown. They have made so much progress since they have been home and they never cease to amaze me!
When Joshua first came home he had just started rolling over. He quickly learned how to do his own version of an army crawl and is now completely up on his hands and feet crawling all over the house. It really is a sight to be seen! Not only is he crawling all over the place, he has also learned how to sit completely unsupported. Because his left leg is so short, he has a difficult time keeping his balance and, in the beginning, had to keep one hand on the ground to keep himself from falling over. He is now sitting by himself without the support of his hands. It is the cutest thing to see him sitting there holding onto his toes! And on top of all that, just last week he started pulling himself up to a standing position (given, standing for Joshua is just a few inches off the ground, but he is standing)! He is doing so well in fact, that his weekly physical therapy visits have been scaled back to monthly "checkups." Needless to say, I am constantly in awe of my sweet little man.
Evan has also made huge progress in the short time that he has been home. His language skills are incredible. Within a week of being home he could already count to ten and sing "Twinkle, Twinkle Little Star" in English. He is now using more English than Russian and is speaking in full sentences and, when he does use his Russian, he always repeats what he is saying in English. He is a very, very smart little boy! He has also made great progress physically. He is sitting unsupported and rolls or does what we like to call the "inch worm" (sticks his bottom in the air and scoots on his belly across the floor) to get wherever he wants to go. He loves to read books (he turns the pages using his mouth and his chin) and play with cars (he lays on the floor and uses his head to push the cars around). He has also learned how to pick up small pieces of food off of his high chair tray using only his mouth. He has his physical and occupational therapy evaluations in the morning and I am excited to get him started with therapies that I have no doubt will change his life. We are also hoping to get him into a wheelchair in the near future so that he is able to get around a little better before we start working on getting him up on his feet. We have also scheduled the surgery for his feet for the beginning of April. It will be a long road, but I cannot wait to watch him soar.
I have always marveled at the accomplishments of each and every one of my children, but I have to tell you, there is something about watching children who have the odds stacked against them overcome and achieve that is simply awe-inspiring. Having these sweet boys in my life has really been a life changing experience for me and my family! We have definitely had our challenges and I know that they will continue (because it is the challenges that make us stronger), but those challenges make the triumphs so much sweeter! We could not be more blessed for having these little ones in our lives!
When Joshua first came home he had just started rolling over. He quickly learned how to do his own version of an army crawl and is now completely up on his hands and feet crawling all over the house. It really is a sight to be seen! Not only is he crawling all over the place, he has also learned how to sit completely unsupported. Because his left leg is so short, he has a difficult time keeping his balance and, in the beginning, had to keep one hand on the ground to keep himself from falling over. He is now sitting by himself without the support of his hands. It is the cutest thing to see him sitting there holding onto his toes! And on top of all that, just last week he started pulling himself up to a standing position (given, standing for Joshua is just a few inches off the ground, but he is standing)! He is doing so well in fact, that his weekly physical therapy visits have been scaled back to monthly "checkups." Needless to say, I am constantly in awe of my sweet little man.
Evan has also made huge progress in the short time that he has been home. His language skills are incredible. Within a week of being home he could already count to ten and sing "Twinkle, Twinkle Little Star" in English. He is now using more English than Russian and is speaking in full sentences and, when he does use his Russian, he always repeats what he is saying in English. He is a very, very smart little boy! He has also made great progress physically. He is sitting unsupported and rolls or does what we like to call the "inch worm" (sticks his bottom in the air and scoots on his belly across the floor) to get wherever he wants to go. He loves to read books (he turns the pages using his mouth and his chin) and play with cars (he lays on the floor and uses his head to push the cars around). He has also learned how to pick up small pieces of food off of his high chair tray using only his mouth. He has his physical and occupational therapy evaluations in the morning and I am excited to get him started with therapies that I have no doubt will change his life. We are also hoping to get him into a wheelchair in the near future so that he is able to get around a little better before we start working on getting him up on his feet. We have also scheduled the surgery for his feet for the beginning of April. It will be a long road, but I cannot wait to watch him soar.
I have always marveled at the accomplishments of each and every one of my children, but I have to tell you, there is something about watching children who have the odds stacked against them overcome and achieve that is simply awe-inspiring. Having these sweet boys in my life has really been a life changing experience for me and my family! We have definitely had our challenges and I know that they will continue (because it is the challenges that make us stronger), but those challenges make the triumphs so much sweeter! We could not be more blessed for having these little ones in our lives!
Balloons
I was in the kitchen getting dinner ready this evening when I hear Joshua start cracking up. I turned around to see him laying on his back in the living room smacking himself in the face with a balloon! He thought it was hilarious! Who knew a balloon could provide so much entertainment! This kid keeps me laughing! (PS- please excuse the croak in my voice and the fact that my kids are still in their pajamas at 5:00 in the evening. . .we have had the flu. . for two weeks. . .it is the pits.)
Tuesday, January 29, 2008
And now, for a medical update. . . .
The boys FINALLY had their orthopedic consult this afternoon. I have been anticipating this day for quite awhile since both of the boys have orthopedic special needs. While we have learned a lot from their x-rays, lab work and various other doctor's appointments and consults, we have always known that this appointment would be the most telling.
I actually found Joshua's portion of the appointment quite fascinating. His defect is very rare and we have all been waiting with bated breath (doctors, nurses and specialists included) to see what his treatment options might be. For those of you less familiar with Joshua's condition, he has been diagnosed with sacral dysgenesis, caudal regression and phocomelia. Both of his femur's are absent and he is missing the tibia of his left leg. His little feet (which are not so little) are perfect. Today we discussed several options for Joshua. The first is to do nothing at all. Now, by nothing at all, we simply mean that we would not pursue surgery or prosthetics. This may not seem like a great option, BUT, Joshua has already proven to us that he can and will do whatever he puts his mind to. He is already crawling (his own version of crawling of course) and can sit completely unsupported. . .when we brought him home almost 3 months ago, he was barely rolling over. While conventional thinking tends to suggest that all people should be up on two legs if at all possible, the truth is, there ARE other methods of mobility and those methods are often preferred over prosthetics for many individuals. The second option, which I don't think we would ever consider, is to amputate his feet and fit him for prosthetics. Before we met Joshua, we had considered this option, but now that we have him home, I simply could not imagine taking his feet. He uses his feet. He LOVES his feet. . . .some babies suck on pacifiers or carry blankies, Joshua plays with his feet (and who could blame him. . they are within arms reach!). The third option, which I found to be bizarre, yet fascinating, is to use his ankle joints as knee joints. This would be achieved by essentially turning the ankle joint around (basically, putting his feet on backwards), straightening the feet to act as his lower legs, and fit him with prosthetics. While we did find this option interesting to say the least, like amputating his feet, it would leave him without the use of his feet and I just don't think we could go that route. Finally, the last (and most probable) option is to fit him with "unconventional" prosthetics (fitted over his feet). There is also an option within this option of lengthening his left leg (which presently barely extends past his hip) to help even out his legs making the use of the prosthetic easier and also giving him the option of walking without prosthetics. At present, this is the option that we are most strongly considering.
Thankfully, our orthopedist feels strongly that, because Joshua is still young and still learning how to use his body, the best thing that we can do for him right now is to allow him more time to develop so that we can get a good picture of what his abilities will be. The entire orthopedic team will see Joshua again in 6 months and will reevaluate our options based on his development at that time. All-in-all, I was very pleased with his orthopedist and our visit.
Evan's appointment was very straightforward. While most of Evan's treatment will come in the form of physical and occupational therapies, there are several surgeries that he will need to undergo in order to achieve mobility. The first surgery will be for his feet which are clubbed. The doctor hopes to be able to straighten his feet by correcting only the soft tissues rather than the "bony structure." This surgery will be followed by several months of casting. Once his feet have healed, the doctor will then try to loosen the contractures in his knees. There is a high recurrence of knee contractures in arthrogryposis, so there is a chance that this surgery may have to be repeated later in life, but, these surgeries will hopefully allow Evan to get up on his feet! We will wait a few months before scheduling the surgery for his feet as we feel that Evan needs a little more time to acclimate to his new life before beginning the next whirlwind of events in his life, but we are glad to have a game plan.
Overall, I was very pleased with the visit and am happy to finally have a glimpse of what our options are!
I actually found Joshua's portion of the appointment quite fascinating. His defect is very rare and we have all been waiting with bated breath (doctors, nurses and specialists included) to see what his treatment options might be. For those of you less familiar with Joshua's condition, he has been diagnosed with sacral dysgenesis, caudal regression and phocomelia. Both of his femur's are absent and he is missing the tibia of his left leg. His little feet (which are not so little) are perfect. Today we discussed several options for Joshua. The first is to do nothing at all. Now, by nothing at all, we simply mean that we would not pursue surgery or prosthetics. This may not seem like a great option, BUT, Joshua has already proven to us that he can and will do whatever he puts his mind to. He is already crawling (his own version of crawling of course) and can sit completely unsupported. . .when we brought him home almost 3 months ago, he was barely rolling over. While conventional thinking tends to suggest that all people should be up on two legs if at all possible, the truth is, there ARE other methods of mobility and those methods are often preferred over prosthetics for many individuals. The second option, which I don't think we would ever consider, is to amputate his feet and fit him for prosthetics. Before we met Joshua, we had considered this option, but now that we have him home, I simply could not imagine taking his feet. He uses his feet. He LOVES his feet. . . .some babies suck on pacifiers or carry blankies, Joshua plays with his feet (and who could blame him. . they are within arms reach!). The third option, which I found to be bizarre, yet fascinating, is to use his ankle joints as knee joints. This would be achieved by essentially turning the ankle joint around (basically, putting his feet on backwards), straightening the feet to act as his lower legs, and fit him with prosthetics. While we did find this option interesting to say the least, like amputating his feet, it would leave him without the use of his feet and I just don't think we could go that route. Finally, the last (and most probable) option is to fit him with "unconventional" prosthetics (fitted over his feet). There is also an option within this option of lengthening his left leg (which presently barely extends past his hip) to help even out his legs making the use of the prosthetic easier and also giving him the option of walking without prosthetics. At present, this is the option that we are most strongly considering.
Thankfully, our orthopedist feels strongly that, because Joshua is still young and still learning how to use his body, the best thing that we can do for him right now is to allow him more time to develop so that we can get a good picture of what his abilities will be. The entire orthopedic team will see Joshua again in 6 months and will reevaluate our options based on his development at that time. All-in-all, I was very pleased with his orthopedist and our visit.
Evan's appointment was very straightforward. While most of Evan's treatment will come in the form of physical and occupational therapies, there are several surgeries that he will need to undergo in order to achieve mobility. The first surgery will be for his feet which are clubbed. The doctor hopes to be able to straighten his feet by correcting only the soft tissues rather than the "bony structure." This surgery will be followed by several months of casting. Once his feet have healed, the doctor will then try to loosen the contractures in his knees. There is a high recurrence of knee contractures in arthrogryposis, so there is a chance that this surgery may have to be repeated later in life, but, these surgeries will hopefully allow Evan to get up on his feet! We will wait a few months before scheduling the surgery for his feet as we feel that Evan needs a little more time to acclimate to his new life before beginning the next whirlwind of events in his life, but we are glad to have a game plan.
Overall, I was very pleased with the visit and am happy to finally have a glimpse of what our options are!
Thursday, January 24, 2008
Ukrainian Snow Angels. . .
Lukas, Jacob and Maren modeling their Ukrainian snow suits/boots
My TRUE Ukrainian snow bunny!
And my sweet little Uzbek snow monkeyBecause Ukrainians spend so much time out in the cold weather, they have an abundance of "winter wear" to choose from. After watching the Ukrainian children walk around in their snow suits, we just could not pass up the opportunity to bring this part of Ukrainian culture home with us! I have to say, it was money very well spent. . .don't you think!?
Could you take me out of this monkey suit please!?
How they managed to get onto this teeter totter I am not sure. . .they could barely walk in those things (although they did get the hang of it pretty quickly)Tuesday, January 22, 2008
The Dust is Settling. . .
No, we haven't fallen off the face of the earth just in case anyone has been wondering! The past few weeks have been incredibly busy with doctors appointments, therapies, birthdays and visits from family, but I am very happy to report that we are settling into a nice routine after the chaos of the past few months!
When we aren't running to and from doctors appointments and therapies or running various errands, we can usually be found at home. While I am typically the kind of person who likes to get out, I have tried to keep these past few weeks as low key as possible for my kids. Joshua and Evan have obviously had huge adjustments to make, but Maren, Lukas and Jacob, who have always had a good routine and structure prior to our adoption adventures, have also had to make some adjustments and settle back into a routine. Things are going well on the home front and it seems as though the dust is finally beginning to settle (for now at least. . .once Josh and Evan are BOTH in therapy and we have various surgeries on the schedule as well, things are likely to get a bit chaotic again).
For your viewing pleasure I had added several more pictures of life over the past few weeks. I hope you enjoy them. . . .
Lukas and Joshua snuggled up watching Curious George
Storytime with Grandma DD
Evan and Josh doing some bonding
Grandma DD and Maren playing dress up
Grandma DD and Evan getting to know each other
When we aren't running to and from doctors appointments and therapies or running various errands, we can usually be found at home. While I am typically the kind of person who likes to get out, I have tried to keep these past few weeks as low key as possible for my kids. Joshua and Evan have obviously had huge adjustments to make, but Maren, Lukas and Jacob, who have always had a good routine and structure prior to our adoption adventures, have also had to make some adjustments and settle back into a routine. Things are going well on the home front and it seems as though the dust is finally beginning to settle (for now at least. . .once Josh and Evan are BOTH in therapy and we have various surgeries on the schedule as well, things are likely to get a bit chaotic again).
For your viewing pleasure I had added several more pictures of life over the past few weeks. I hope you enjoy them. . . .
Lukas and Joshua snuggled up watching Curious George
Storytime with Grandma DD
Evan and Josh doing some bonding
Grandma DD and Maren playing dress up
Grandma DD and Evan getting to know each otherYet Another Happy, Happy, Happy Birthday!
Today we celebrated the life and birth of our triplets Maren, Lukas and Jacob. While this post should probably be made to our family website, I can't help but think that the events of this blessed day three years ago was where our adoption journey really began.
While we had briefly looked into adopting prior to conceiving our triplets our minds at that time were really focused on conceiving a child (although I do feel like having to consider this option as a way to bring children into our family prepared us for what the Lord would have planned for us later down the road). It was not until January 22, 2005 that we knew with surety that our other children would come to us through the miracle of adoption.
On this day, three years ago, I was laying in a hospital bed and was the size of a small house. I was absolutely miserable, but was determined to keep my babies in for as long as I possibly could. This was my fifth and final admission to the hospital during my pregnancy. I was 33 weeks, 6 days into my pregnancy and had already been in the hospital for 3 days, fighting off my impending labor. Prior to my admission to the hospital I had been on bedrest for 8 weeks and hooked up to a terbutaline pump and doing home uterine monitoring since 23 weeks gestation. My body was ready to evict the three little people swimming around inside, but I was fighting hard to keep them in. On the morning of January 22, 2005 I was 3 cm dilated and my contractions were still coming at regular intervals, although they had slowed a bit. With the help of my mother and my husband, I was able to get a shower that morning (an interesting experience to say the least) and several of my friends stopped by to check in on me. Some time early that afternoon I began to have difficulty breathing. My oxygen saturation was low and a respiratory therapist was called in to give me a breathing treatment. When I failed to respond to the treatments, several tests were run and it was concluded that I had pulmonary edema (fluid in my lungs). In addition to the pulmonary edema I was running a high fever. My doctor was called in and it was decided that I would deliver immediately.
I won't bore you with all of the details of the c-section preparation, but within an hour of making the decision to deliver, my beautiful babies were born. At 6:28, 6:28 and 6:29 pm on January 22, 2005, Maren, Lukas and Jacob came into this world kicking and screaming. I wish I could tell you more about the blessed event, but shortly after they were delivered, I began to lose blood rapidly and lost consciousness. For the next hour the doctors tried to stop the bleeding in hopes of saving my uterus, but they were unsuccessful. After giving me 5 units of blood and every drug on the market to help my uterus contract, the decision was made to perform an emergency hysterectomy in order to save my life. I was in and out of consciousness during this time, so it was not like I woke up to this news. Although I cannot remember many details, I was aware of what was going on. I do remember experiencing a brief moment of sadness as I knew that our family was not complete, but in the same moment I felt peace.
Eighteen hours after my babies had been delivered, I was able to visit them in the NICU. What an amazing moment that was. . .seeing my three, big (well, according to triplet standards. . 5.2 lbs., 4.15 lbs., 4.10 lbs.), beautiful, healthy babies for the very first time! What an incredible blessing.
It was that day that Richard and I made the decision that we would add to our family through adoption. We felt incredibly blessed to have our three, beautiful and healthy children, but despite the fact that I could no longer bear children, we still knew that our family was not complete. Our adoption journey would not truly begin for another two years, but this was the day is truly took root! So, as you can see, I have so much to celebrate today. . . the lives of my three, incredible children, my own life and the seeds of adoption being planted in our hearts!
It is hard to believe that, just three year ago, we were becoming parents for the very first time. . .and to three, such amazing little people. My life has been so blessed and enriched for knowing them and I truly thank my Heavenly Father everyday for allowing me the opportunity to be their mother!
HAPPY, HAPPY, HAPPY BIRTHDAY Maren, Lukas and Jacob! You are my angels and I love you more deeply than words can express! Thank you for an amazing 3 years!
Maren, Lukas and Jacob (5 days old)
Jacob, Maren and Lukas celebrating their 3rd birthday!
While we had briefly looked into adopting prior to conceiving our triplets our minds at that time were really focused on conceiving a child (although I do feel like having to consider this option as a way to bring children into our family prepared us for what the Lord would have planned for us later down the road). It was not until January 22, 2005 that we knew with surety that our other children would come to us through the miracle of adoption.
On this day, three years ago, I was laying in a hospital bed and was the size of a small house. I was absolutely miserable, but was determined to keep my babies in for as long as I possibly could. This was my fifth and final admission to the hospital during my pregnancy. I was 33 weeks, 6 days into my pregnancy and had already been in the hospital for 3 days, fighting off my impending labor. Prior to my admission to the hospital I had been on bedrest for 8 weeks and hooked up to a terbutaline pump and doing home uterine monitoring since 23 weeks gestation. My body was ready to evict the three little people swimming around inside, but I was fighting hard to keep them in. On the morning of January 22, 2005 I was 3 cm dilated and my contractions were still coming at regular intervals, although they had slowed a bit. With the help of my mother and my husband, I was able to get a shower that morning (an interesting experience to say the least) and several of my friends stopped by to check in on me. Some time early that afternoon I began to have difficulty breathing. My oxygen saturation was low and a respiratory therapist was called in to give me a breathing treatment. When I failed to respond to the treatments, several tests were run and it was concluded that I had pulmonary edema (fluid in my lungs). In addition to the pulmonary edema I was running a high fever. My doctor was called in and it was decided that I would deliver immediately.
I won't bore you with all of the details of the c-section preparation, but within an hour of making the decision to deliver, my beautiful babies were born. At 6:28, 6:28 and 6:29 pm on January 22, 2005, Maren, Lukas and Jacob came into this world kicking and screaming. I wish I could tell you more about the blessed event, but shortly after they were delivered, I began to lose blood rapidly and lost consciousness. For the next hour the doctors tried to stop the bleeding in hopes of saving my uterus, but they were unsuccessful. After giving me 5 units of blood and every drug on the market to help my uterus contract, the decision was made to perform an emergency hysterectomy in order to save my life. I was in and out of consciousness during this time, so it was not like I woke up to this news. Although I cannot remember many details, I was aware of what was going on. I do remember experiencing a brief moment of sadness as I knew that our family was not complete, but in the same moment I felt peace.
Eighteen hours after my babies had been delivered, I was able to visit them in the NICU. What an amazing moment that was. . .seeing my three, big (well, according to triplet standards. . 5.2 lbs., 4.15 lbs., 4.10 lbs.), beautiful, healthy babies for the very first time! What an incredible blessing.
It was that day that Richard and I made the decision that we would add to our family through adoption. We felt incredibly blessed to have our three, beautiful and healthy children, but despite the fact that I could no longer bear children, we still knew that our family was not complete. Our adoption journey would not truly begin for another two years, but this was the day is truly took root! So, as you can see, I have so much to celebrate today. . . the lives of my three, incredible children, my own life and the seeds of adoption being planted in our hearts!
It is hard to believe that, just three year ago, we were becoming parents for the very first time. . .and to three, such amazing little people. My life has been so blessed and enriched for knowing them and I truly thank my Heavenly Father everyday for allowing me the opportunity to be their mother!
HAPPY, HAPPY, HAPPY BIRTHDAY Maren, Lukas and Jacob! You are my angels and I love you more deeply than words can express! Thank you for an amazing 3 years!
Maren, Lukas and Jacob (5 days old)
Jacob, Maren and Lukas celebrating their 3rd birthday!Tuesday, January 8, 2008
HAPPY, HAPPY BIRTHDAY!
Today we celebrated the birthday's of two of the greatest men in my life. . .my amazing husband, Richard, and my littlest man, Joshua! For me, celebrating a birthday has always been more than cake, ice cream and presents, rather, it is truly the celebration of a person's life. I am especially grateful for the lives of my husband and son and for the people that they are. Their lives bless mine each and every day and that is truly worth celebrating!
Although I did not have the privilege of spending the first 9 months of my son's life with him, it did not take me long to realize what a great mission and purpose the Lord must have for him. There is no doubt in my mind that he will touch many, many lives as he goes through the course of his own. He has already touched mine more deeply than words can express.
Happy Birthday my boys! I cherish you both!
Although I did not have the privilege of spending the first 9 months of my son's life with him, it did not take me long to realize what a great mission and purpose the Lord must have for him. There is no doubt in my mind that he will touch many, many lives as he goes through the course of his own. He has already touched mine more deeply than words can express.
Happy Birthday my boys! I cherish you both!
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