Monday, August 29, 2011 1:54 PM, CDT
Time flies when you are having fun! Well, time flies anyway! We have had a really busy month with a variety of appointments with a number of different specialists. We we now have a GI doc, a physical therapist (we already have an occupational therapist), and have selected a hand surgeon (we had consults with specialists in OH and FL).
Annie also had a (4 hour!) cardiology visit this month, which I am happy to report was mostly good news! Her tests all looked pretty good, except for her chest x-ray which showed hazy lungs and what they thought was a tumor. Yep, they thought that they saw a suspicious “lesion” on her clavicle, which had us all scared to death that she had cancer (neuroblastoma to be exact).
When she went back for repeat films it was miraculously gone. I think we had some divine intervention!!! Needles to say; however, I think I aged about 50 years during the process! I was so scared and worried I was numb. As many of you know, my father died from a rare type of bone cancer, so it is never too far out of my mind. Of course, neuroblastoma is apparently the most common type of childhood cancer, so since Annie only has rare things, it didn’t seem likely in the first place!!
As for the hazy lungs? The cardiologist still refers to it as diastolic dysfunction but is hopeful that the farther out from surgery she gets the better she will get. In the meantime they have doubled her Lasix (diuretic) to try and rid her body of the extra fluid. I guess time will tell. She continues to be very congested all the time but it doesn’t seem to bother her. The data from her pacemaker still shows little to no use so they turned down the setting to see if she is really using it or not. We will know for sure in a month. It is so cool how they can read it and adjust it with a computer!
We added the GI doc to her list of specialists due to constant throwing up and failure to gain weight. Luckily, after switching her to a thicker formula she throws up much less and seems to be gaining some weight (we go Thursday for a weight check). Keep your fingers crossed!
We started seeing the PT to help strengthen her core. She has already shown some improvement! She is trying mightily to crawl, but just doesn’t have the arm movement and strength to do it. The PT does not think that she will likely ever crawl, but I have learned to never underestimate our little miracle baby! As long as she can walk, who needs to crawl anyway?!?! It is pretty amazing, but she can pretty much pick up anything she wants to. She either uses both hands, or if she is laying on her back she uses her feet. It is really neat to watch her figure things out.
We have scheduled Annie for her first hand surgery, pollicization (moving the index finger to the thumb position), in January. The surgeon only does one hand at a time due to the intricate and delicate procedure, so she will have the second hand done a month after the first. We have selected a doctor in West Palm Beach, FL, so it will be a challenge logistically speaking, but we are willing to do whatever is necessary to make sure she has the best and most experienced surgeon. Her third surgery will take place when she is between 2 and 3 years old, at which time she will have the radius on each side lengthened, which will straighten out her wrists. We have done countless hours (days literally) of research and feel good about these procedures. We have also had the opportunity to speak to a couple of families that have first hand (pardon the pun) experience with the surgeon and procedures.
Between her weekly OT, biweekly PT, and continued doctor’s visits I have decided to work part time. I now get to spend all day Tuesday and Thursday with my sweet girl!
Annie also had a (4 hour!) cardiology visit this month, which I am happy to report was mostly good news! Her tests all looked pretty good, except for her chest x-ray which showed hazy lungs and what they thought was a tumor. Yep, they thought that they saw a suspicious “lesion” on her clavicle, which had us all scared to death that she had cancer (neuroblastoma to be exact).
When she went back for repeat films it was miraculously gone. I think we had some divine intervention!!! Needles to say; however, I think I aged about 50 years during the process! I was so scared and worried I was numb. As many of you know, my father died from a rare type of bone cancer, so it is never too far out of my mind. Of course, neuroblastoma is apparently the most common type of childhood cancer, so since Annie only has rare things, it didn’t seem likely in the first place!!
As for the hazy lungs? The cardiologist still refers to it as diastolic dysfunction but is hopeful that the farther out from surgery she gets the better she will get. In the meantime they have doubled her Lasix (diuretic) to try and rid her body of the extra fluid. I guess time will tell. She continues to be very congested all the time but it doesn’t seem to bother her. The data from her pacemaker still shows little to no use so they turned down the setting to see if she is really using it or not. We will know for sure in a month. It is so cool how they can read it and adjust it with a computer!
We added the GI doc to her list of specialists due to constant throwing up and failure to gain weight. Luckily, after switching her to a thicker formula she throws up much less and seems to be gaining some weight (we go Thursday for a weight check). Keep your fingers crossed!
We started seeing the PT to help strengthen her core. She has already shown some improvement! She is trying mightily to crawl, but just doesn’t have the arm movement and strength to do it. The PT does not think that she will likely ever crawl, but I have learned to never underestimate our little miracle baby! As long as she can walk, who needs to crawl anyway?!?! It is pretty amazing, but she can pretty much pick up anything she wants to. She either uses both hands, or if she is laying on her back she uses her feet. It is really neat to watch her figure things out.
We have scheduled Annie for her first hand surgery, pollicization (moving the index finger to the thumb position), in January. The surgeon only does one hand at a time due to the intricate and delicate procedure, so she will have the second hand done a month after the first. We have selected a doctor in West Palm Beach, FL, so it will be a challenge logistically speaking, but we are willing to do whatever is necessary to make sure she has the best and most experienced surgeon. Her third surgery will take place when she is between 2 and 3 years old, at which time she will have the radius on each side lengthened, which will straighten out her wrists. We have done countless hours (days literally) of research and feel good about these procedures. We have also had the opportunity to speak to a couple of families that have first hand (pardon the pun) experience with the surgeon and procedures.
Between her weekly OT, biweekly PT, and continued doctor’s visits I have decided to work part time. I now get to spend all day Tuesday and Thursday with my sweet girl!
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