When Madeline was born the NICU doctor told us that there was a decent chance we'd be moving back to the states before we were scheduled to, which was supposed to be the summer of 2012. Dwarfism is pretty rare and many doctors don't have experience with it. If Maddy developed any problems that required specific, specialized care, we would have to try to get her treatment in Germany (where the language barrier is significant) or be sent back to the states on emergency leave. So Maddy went through some diagnostic tests that ruled out any immediate problems. Then her pediatrician gave us some hints on how to handle a baby with achondroplasia, and she urged us to focus on the typical baby stuff and not worry about the future right away.
We started doing research online (you know, during the vast amounts of spare time we had with a newborn and a preschooler). It soon became clear that many of these babies were taken to specialists at least once or twice during their first year, and then through early childhood. Achondroplasia doesn't just mean Maddy will be short; much of her anatomy is different than that of a typical child. There are lots of things to look for, like spinal cord compression, hydrocephalus, kyphosis, bowed legs, apnea, recurrent ear infections, and speech problems. (I'm sure I left something off of that list...)
At her four-month checkup the doctor discussed the possibility of moving back to the states and told us to think about it. The NICU doctor and the pediatrician could give us advice, and they seemed to lean towards sending us back, but they couldn't make the decision for us. We had to decide. At the five-month checkup we started the paperwork to apply for reassignment to the states. I'm talking a LOT of papers, and lots of different signatures. It's supposed to be a fast process, but for many annoying reasons it was quite slow. Mike finally handed the completed application packet off at the end of May. In those papers the pediatrician had stated that we needed to be stationed near a skeletal dysplasia specialist. We hoped that whoever made the final decision would follow through with that.
So we waited...and waited. I was starting to think we would be here until the fall. Then Mike checked the status of our case one last time before the long holiday weekend...and there it was, the reassignment to Dayton, Ohio. And it's an hour away from Cincinnati Children's Hospital, which has a skeletal dysplasia clinic! We were so relieved. Unfortunately, with the holiday weekend and some other complicating factors, Mike couldn't get much done the day he found out. But the wheels are turning, and now is when the process does get fast. From what we can tell, we need to be out of Germany by the end of July. That's really soon! I have no idea how it's going to happen. It's going to be messy and frustrating. But very soon we'll be close to specialists for Maddy, and close to other families with kids like her.
I know I can speak for Mike when I say that we are so grateful for his job and the squadron he's in right now. His superiors and colleagues have been unbelievably supportive. We are aware that this sudden reassignment upsets the apple cart for lots of people. It usually takes many months to replace an outgoing member, and we'll be gone in a matter of weeks. And while we've had lots of offers of help with babysitting, packing and cleaning, many people will be on vacation during the time we'll be moving out. We are hoping that we'll be able to say goodbye to some folks before we fly back. We have made so many wonderful friends here and will miss them dearly.
I am a little sad to miss out on our last year in Germany, but this is definitely what our family needs right now. We'll keep everyone posted with details as soon as we find them out ourselves.
At her four-month checkup the doctor discussed the possibility of moving back to the states and told us to think about it. The NICU doctor and the pediatrician could give us advice, and they seemed to lean towards sending us back, but they couldn't make the decision for us. We had to decide. At the five-month checkup we started the paperwork to apply for reassignment to the states. I'm talking a LOT of papers, and lots of different signatures. It's supposed to be a fast process, but for many annoying reasons it was quite slow. Mike finally handed the completed application packet off at the end of May. In those papers the pediatrician had stated that we needed to be stationed near a skeletal dysplasia specialist. We hoped that whoever made the final decision would follow through with that.
So we waited...and waited. I was starting to think we would be here until the fall. Then Mike checked the status of our case one last time before the long holiday weekend...and there it was, the reassignment to Dayton, Ohio. And it's an hour away from Cincinnati Children's Hospital, which has a skeletal dysplasia clinic! We were so relieved. Unfortunately, with the holiday weekend and some other complicating factors, Mike couldn't get much done the day he found out. But the wheels are turning, and now is when the process does get fast. From what we can tell, we need to be out of Germany by the end of July. That's really soon! I have no idea how it's going to happen. It's going to be messy and frustrating. But very soon we'll be close to specialists for Maddy, and close to other families with kids like her.
I know I can speak for Mike when I say that we are so grateful for his job and the squadron he's in right now. His superiors and colleagues have been unbelievably supportive. We are aware that this sudden reassignment upsets the apple cart for lots of people. It usually takes many months to replace an outgoing member, and we'll be gone in a matter of weeks. And while we've had lots of offers of help with babysitting, packing and cleaning, many people will be on vacation during the time we'll be moving out. We are hoping that we'll be able to say goodbye to some folks before we fly back. We have made so many wonderful friends here and will miss them dearly.
I am a little sad to miss out on our last year in Germany, but this is definitely what our family needs right now. We'll keep everyone posted with details as soon as we find them out ourselves.
3 comments:
God bless you and your wonderful family, Sarah. We are soooo glad you will be in the states where Maddy can get the care she needs. Dad and I will be there if there is anything we can do. Change is hard and we are here to support you during this stressful time.
Can't wait till you are back in the USA!!! Love you, Mom
I'm sure this must be a bitter-sweet experience, but it is for the best. It will be better for Maddy, and ultimately, you two. Count on us to help in any way possible. Love, Dad
I'm so excited you are moving back...I can't wait to see you, Mike and Benjamin again, and of course to meet that precious angel Maddy! If I can help in any way let me know. Love to all, Aunt Janie
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