Tuesday, April 9, 2013

Fuhrman family is expanding!

It has been a while since I last updated the blog and boy have a lot of things happened since then! First things first, colt has been making progress with his speech and I am so proud at how hard he is working. Mrs. Julie, his speech therapist comes to our home twice a week to work with colt. He has about 30 or so words that he uses pretty regularly and he has recently just started saying 2 word phrases! Yay go colt :) although, this may seem like not such a big deal to most people who have a 2.5 year old, it is a huge deal in the world of apraxia kids. Colts hard work is paying off. Colt has also been going to open gym on Monday mornings and I have really noticed that it is helping with his confidence and fine and gross motor skills. This past Monday he climbed the 2 story slide all by himself :) colt continues to have a heart of gold and smile that will melt everyone's heart. He is doing very well at Mother's Day out and can now identify a few colors when asked. I'm amazed every day at how he is developing and how far he has come in the last year. I have to remind myself that he was isolated from the world for the first 18 months of his life. I'm so grateful god has blessed me with such a sweet, loving, courageous, and spunky little man. Colt will begin his 2 year post transplant test in June. I ask for prayers that everything continues to look great with all his test. On to some more exciting news- most of y'all know we are expecting baby number 2 in late August! Baby Brooks was a welcomed surprise! We made the decision when we found out I was pregnant not to tell anyone but our immediate family until we has the genetic test results back. Since chuck and myself both carry the gene that causes HLH there was a 25% chance that this baby would be effected, 50% chance it would be a carrier, and 25% chance no mutation at all. So at 12 weeks pregnant I went to a high risk doctor and had a test done called CVS (chorionic villi sampling). Basically they insert a catheter through the cervix to get cells from the placenta to test for genetic mutations. The placenta cells are made up of the same genetic DNA as the baby. I had the cvs done on February 19th and after 2 1/2 very long weeks of waiting (they send the sample to Cincinnati, since that is the only lab that test for HLH in the U.S) we got the call from our wonderful genetic counselor. She informed me that the baby got the other 25% chance from colt and was 100% healthy! Oh and it was a boy :) until you have a child with a genetic disease that is fatal you will never truly understand the joy you get when you hear " your child is healthy!" Since baby BRooks is healthy and not a carrier we have decided to bank his cord blood at the advice of my doctor and colts BMT doctor. Cord blood banking is very expensive, but since we have a child with a transplantable disease, MD Anderson's cord blood bank will bank the baby's cord blood for free for a year and then after a year, we will pay a yearly fee (much smaller than most people would pay). The reason we decided to bank his cord blood is, god forbid colt ever needs another transplant his sibling would be the closest match. So we hope we never have to use the baby's cord blood, but its there if needed. So as you can tell, we have had a lot of excitement that last couple months! We are so very blessed for colts progress and for god blessing us with another healthy little boy to complete our family. Thank you everyone for all the continued prayers! Natalie

1 comment:

  1. You are Chuck are amazing and I love love reading your story! Your family is always in my prayers! I love baby boy's name!

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