Saturday, October 20, 2012
The Transfer Process
We have been in the process of transferring from Upstate Medical in Syracuse for over 4 months. It has been an interesting 4 months say the least. Our geneticists at Syracuse doesn't want us to transfer so she has been putting her foot in the door all along the way and making it as difficult as possible. She has gone as far as calling up the boys' other doctors and lying to them, and telling them that this was to much of a difficult treatment that they(the doctor) would not be able to handle it. We haven't gotten discouraged yet and we've been fighting for those boys. A 20 minute trip to the hospital will be so much nicer than the hour and a half trip we have been taking since April.
We have had the hospital here at Lourdes trained in every which way possible. Their pediatrician does not seemed worried at all, and he also hasn't let the geneticist discourage him either. The pediatrician is coming out to watch the boys infusion on Thursday in Syracuse, hopefully our last infusion there. And we will know more after Thursday when we will be infusing at Lourdes Hospital. Hoping the next Thursday Nov 1st we will have everything set up. We then plan to do 2 or 3 infusions at Lourdes and then get everything set up for home infusions, so we will no longer have to travel for the two boys.
Once the baby is here I will be taking him to Albany Medical which is 2 hours away for treatments. Which won't be as bad with only one child. That is where we have now found our new geneticist who seems to want the best for the boys and has already done more for this baby then Dr.Pellegrino ever did for Hunter and Kingston. So I am excited for this new step. Hopefully next year won't be as stressful for us since we will actually have a doctor on our side. :)
We will be meeting with him November 2nd, after that we will have more answers about the baby and when infusions will be able to take place. So please keep us in thought for the next couple weeks we have A LOT of big decisions coming up!
We have had the hospital here at Lourdes trained in every which way possible. Their pediatrician does not seemed worried at all, and he also hasn't let the geneticist discourage him either. The pediatrician is coming out to watch the boys infusion on Thursday in Syracuse, hopefully our last infusion there. And we will know more after Thursday when we will be infusing at Lourdes Hospital. Hoping the next Thursday Nov 1st we will have everything set up. We then plan to do 2 or 3 infusions at Lourdes and then get everything set up for home infusions, so we will no longer have to travel for the two boys.
Once the baby is here I will be taking him to Albany Medical which is 2 hours away for treatments. Which won't be as bad with only one child. That is where we have now found our new geneticist who seems to want the best for the boys and has already done more for this baby then Dr.Pellegrino ever did for Hunter and Kingston. So I am excited for this new step. Hopefully next year won't be as stressful for us since we will actually have a doctor on our side. :)
We will be meeting with him November 2nd, after that we will have more answers about the baby and when infusions will be able to take place. So please keep us in thought for the next couple weeks we have A LOT of big decisions coming up!
We Will Fight Till The End... for all our boys!
I know there has been many questions regarding Clubbs Baby Boy # 3, so I'm hoping this post will inform everyone that has been wondering. We found out in May that we were expecting again, of course we had the scare that this baby would have the disease. So we did the early CVS testing at 10 weeks. It came back that he was a boy. A boy has a 50% chance that he would have the disease. A girl would n...
ot of had the disease, but a 50% chance of being a carrier of it. From there they sent out his DNA to California to a genetics lab where they tested for the X Linked mutation in his chromosomes.
At 14 weeks of pregnancy we got the phone call that this baby also had MPS 2. From there we had to decide what we were going to do. It broke my heart knowing that I was AGAIN going to have another boy with this life threatening disease but with all the fear and sadness I could never abort my unborn baby.
I would not trade my two boys for anything... YES I would ask for this disease to be gone but other than that I would not change anything about them. They are such a joy in all our lives. I could not imagine taking a life so pure that is going to be just like them.
Atleast now we know ahead of time and are prepared. And this baby will be able to get treatment much sooner, so the affects of the disease won't be as harsh on his body. So that is a big plus!
At 14 weeks of pregnancy we got the phone call that this baby also had MPS 2. From there we had to decide what we were going to do. It broke my heart knowing that I was AGAIN going to have another boy with this life threatening disease but with all the fear and sadness I could never abort my unborn baby.
I would not trade my two boys for anything... YES I would ask for this disease to be gone but other than that I would not change anything about them. They are such a joy in all our lives. I could not imagine taking a life so pure that is going to be just like them.
Atleast now we know ahead of time and are prepared. And this baby will be able to get treatment much sooner, so the affects of the disease won't be as harsh on his body. So that is a big plus!
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