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!
Tuesday, January 29, 2008
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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