Wednesday, February 18, 2015

Update on Todays Appointments

We had appointments with the hematologist and the nephrologist today. We received some pretty good news. They drew the boys' blood and Jace's neutrophils were normal again! This is the second month in a row his have been normal so Dr. Camillo said he did not need to see Jace again. Yay!! Blair's neutrophils were unfortunately low again so we are going to check them here in burley again in 2 weeks and in 4 weeks and see what they do. If he has two consecutive normal levels he will not have to see Dr. Camillo again. If his numbers do not rise or if they go up and back down then we have to bring him back up in 6 weeks to be seen again. We also got the results on Blair's genetic test and it was normal! So exciting. Dr. Camillo suspects this will all disappear for Blair like it did Jace but does not want to release him as a patient until it has gone away for sure. So we are hoping for the next two blood draws to be normal!! 
They also saw their nephrologist today for their blood pressure. They had us stop their blood pressure medication a week ago and both boys' blood pressure was normal today without medication!!! So we don't have to see Dr. Jenkins anymore. He is starting a research project next week with some other doctors though to study this exact issue in premature babies. They don't have any idea why it happens and it always goes away within 5-6 months of age. He comes from Oregon to boise to see Idaho patients and said he only sees about 25 patients a year in Oregon and Idaho with this problem so it's not something extremely common. It will be exciting to see what they can come up with during their research and testing and trying to figure out why it does happen in some premature babies. 
So all in all our day was good!!! Just hoping for Blair's neutrophils to come up.  There hasn't been a whole lot else going on. We pretty well isolate ourselves at home due to all the sicknesses going around. I think some people think I am a crazy weirdo who is extremely over protective of my kids, but being born as premature as they were they're lungs take a long time to fully develop and I don't like to take any risk of sending them back to the hospital. And with low neutrophils on top of that they would not be strong enough to fight an infection or illness. So, unfortunately, Maddie does not get to go play with other kiddos because we don't want her catching something either and bringing it home. Hopefully only a couple more months and most of the flu and rsv will be gone and we can do a little more and be around more people. 
Thank you all again from the bottom of our hearts for all the prayers and thoughts!! Our boys are doing amazing and we couldn't ask for anything better. We are so lucky to have them.
Big boys sitting up in their bumbos! 2-17-15
Watching maddie play outside- 2-17-15
My valentines loves. 2-14-15
Jacer is always so calm and content and Blair is a little turkey. Jace will talk and coo at you and all Blair knows is squawking and screaming. Blair is definitely a feisty little guy and knows what he wants!!! They are both just sweethearts though. 
Uncle Jaxon came home from serving a mission in Arizona!! Waiting at the airport for him. 
Cute little monkeys!! 
And my goofball. I don't know what we would do without this girl in our lives. She is such a joy and we love her so much! 

 

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