We had a good appointment on Tuesday! Dr. W looked over Ish, commented on how much stronger he appeared, and then said that he thought we could wait another six months before getting together again to talk through our plans. He wrote six months on his paper and stood up as if to leave (five minutes had passed), but our roles as advocates came into play and we started telling him about what other doctors have said, what we've read, etc. He then sat down and got more comfortable, and we had a 15 minute longer conversation! Thanks to everyone who was praying for time - we didn't feel rushed at all and were satisfied with what was accomplished.
Dr. W still feels that amputation will provide the higher quality of life for Ish. However, he did admit that he is completely an amputating doctor now, no longer doing limb lengthening or other alternatives, and so he thinks in amputating terms. He was noncommittal about braces, mentioning that they wouldn't really provide long-term benefits; whereas we are thinking of them as an interim-time help so Ish can do what he is already trying to do - stand up!
What we really hoped to see from this appointment was if Dr. W would be a doctor who would allow us the freedom to be a part of the decision - to give us some room to make changes here and there. And this happened, for in April when we return, Dr. W will then set us up to meet with a colleague of his in Baltimore. This colleague, Dr. H, is known for limb-lengthening success, has been recommended to us numerous times now, and also happened to be a resident under Dr. W. during his days at Duke! Dr. W felt that it would be advantageous to talk to Dr. H because he is "a good human being" who will be more interested in the welfare of our child than in promoting his career. Sounds good to us!
So, other than normal pediatrician visits, we have the gift of six months off from consults, exams, etc. Cannot fully convey how relieving that feels! Even if it is the calm before the storm, we are going to appreciate it.
For our prayer warriors, especially after our conversation with Dr. W, we are praying very much that Ish's tibias would grow at a normal rate and that his vestigial fibula (a small sliver of a bone) in his left leg would continue growing as well. In cases of fibular hemimelia, the bones typically do not grow proportionally, causing additional complications. Ish's knees will also have to have some surgical attention in the future, though the scope of such attention won't be known until we can have an MRI much later down the road (for which we evidently will have to strongly advocate.)
Thanks for being a part of our journey! God has been abundant in His mercy - we're glad that we can share that with you.
Dr. W still feels that amputation will provide the higher quality of life for Ish. However, he did admit that he is completely an amputating doctor now, no longer doing limb lengthening or other alternatives, and so he thinks in amputating terms. He was noncommittal about braces, mentioning that they wouldn't really provide long-term benefits; whereas we are thinking of them as an interim-time help so Ish can do what he is already trying to do - stand up!
What we really hoped to see from this appointment was if Dr. W would be a doctor who would allow us the freedom to be a part of the decision - to give us some room to make changes here and there. And this happened, for in April when we return, Dr. W will then set us up to meet with a colleague of his in Baltimore. This colleague, Dr. H, is known for limb-lengthening success, has been recommended to us numerous times now, and also happened to be a resident under Dr. W. during his days at Duke! Dr. W felt that it would be advantageous to talk to Dr. H because he is "a good human being" who will be more interested in the welfare of our child than in promoting his career. Sounds good to us!
So, other than normal pediatrician visits, we have the gift of six months off from consults, exams, etc. Cannot fully convey how relieving that feels! Even if it is the calm before the storm, we are going to appreciate it.
For our prayer warriors, especially after our conversation with Dr. W, we are praying very much that Ish's tibias would grow at a normal rate and that his vestigial fibula (a small sliver of a bone) in his left leg would continue growing as well. In cases of fibular hemimelia, the bones typically do not grow proportionally, causing additional complications. Ish's knees will also have to have some surgical attention in the future, though the scope of such attention won't be known until we can have an MRI much later down the road (for which we evidently will have to strongly advocate.)
Thanks for being a part of our journey! God has been abundant in His mercy - we're glad that we can share that with you.
Hi, Mark, Steph, and Eli, Roger Toby, and Ish!
ReplyDeleteI finally found this page with the help of your message, Steph. Thanks! I will say prayers for Ish and all of your family as you go through this storm. I may not understand the challenge of raising children, but I have Bipolar Disorder since 1994 and have used Christianity to survive my depressions and hyper times (mania times - the old name was manic depression). It has only been my Savior and Lord Jesus Christ that helped me survive through my life. My daily prayer is Phil. 4:13, "I can do all things through Christ who strengthens me." In Jesus' name, I will pray this verse and more for your family. Stay strong and God will bring you through. I know that by now you have heard the quote, "When God brings you to it, He will bring you through it." Please remember this before the storm begins. I pray that it will be as painless as possible for all of you.
May our Lord Jesus Christ heal Ish and sustain all of you through what may be in the future.
-Kristin