Confusing News

I am so sorry I haven't posted in a while. Our computer has a virus and we haven't been able to get it fixed yet so I am using my mom's laptop to update our blog.

Well we got back the results....Bryson's gene was normal! That was some awesome news. The doctor said that he wants to repeat his blood work (his immunoglobulin levels) in two weeks to see where they are at. He said he isn't sure what the other test that came back abnormal means.

We did two different genetic tests...one tested the protein on his gene and one tested the actual gene for defects. The protein is what came back abnormal. He said he wants to watch him closely over the next few months to make sure that things are headed in the right direction. He doesn't have an actual diagnosis for him. I asked him if this means that its for sure not Hyper IgM and he said he is pretty sure its not. That is awesome news, but what the hell is wrong with his levels and his protein then? I think that our plan is to get his levels rechecked and see where they are at. If they haven't gone up then I am thinking about getting a second opinion if we still don't have an answer from this doctor. What I am really hoping is that its something transient that he can outgrow on his own.

The doctor said he thinks he would like to get more aggressive with his treatment now that we know his gene is normal and start him on some IVIg infusions. We said not now. Bryson is doing so well being on the antibiotic and hasn't even had an ear infection this year! Why mess with that stuff when we are doing so well? We will consider it if he starts having issues. I know that what all of these doctors have told us is that kids with Primary Immune Deficiencies don't start to get sick until they are two years old so lets wait and see how he does on this stuff. I also know that Bryson has written his own story this far so lets let him do his thing for a while. He received IVIg when he was an infant in the PICU for five days and he had some weird reactions to it so that is another reason why I don't want to mess with that stuff just yet.

I was just very aggravated because these tests were so expensive and detailed and if one of them is abnormal then I feel like we should be able to find out what means. I feel like if he doesn't know then he should be sending us to someone who does know. I know we are so blessed that Bryson is healthy right now and that is what is the most important thing.

We had an amazing Christmas with the kids. Connor was so excited about EVERYTHING and Bryson had no idea what was going on but was just happy to be a part of it all! I really noticed how attached he is to Brian and I over this holiday. Poor kid. He just isn't used to being around a lot of people so he was so overwhelmed. All in all it was a great Christmas.

Merry Christmas Bryson! You found out your gene is normal!!

I hope everyone out there has a safe and Happy New Year!

Another 2 WEEKS

This is taking FOREVER!

I called the lab again today, the man I talked to last week told me I could call whenever I wanted to check on things. I figured I would see how his genes were cookin'. The man told me it would be ANOTHER 2 weeks. Your kidding, right? He said that he has to keep doing some sort of sequencing over again....whatever. I guess that puts us at after Christmas. Oh well, nothing I can do about it now!

Other than trying to keep my mind off of this whole thing, things are great. Our house is decorated and Connor starts cycle break next week. Lots and lots of QT with mom. I am looking forward to it, we will be making cookies and gingerbread houses. Should be fun!

Just keep the prayers comming our way! Thanks so much!

Two More Weeks

I went ahead and called the lab that they sent Bryson's testing to. The man I talked to was super nice. He told me he has NEVER seen a single gene test take 10-12 weeks. They needed about 2 more weeks TOPS with Bryson's labs. HA! I knew that crazy nurse was wrong! She even had the nerve to call me back on Friday and acted so shocked that I called the lab myself. I can't wait to talk to the doctor now! I am just so tired of dealing with this silly nurse.

That's it! I will let you all know once we have an answer!

OH MY!

My favorite (sarcasm) nurse called me yesterday. She simply left me a message telling me that it may be 10-12 weeks to get back the other test. Are you kidding me right now!!! That has NEVER been mentioned by anyone. Everyone always said 3-4 weeks. Even the doctor! I just take everything that she says with a grain of salt, but it is starting to get soooo frustrating because she is who I have to go through to talk to the doctor. I called and left her a message asking if that is true then why have we not started him on some sort of IVIg for now. That makes no sense to me why they would let an immunocompromised child go over the winter without a diagnosis without treatment. I don't get it. I really don't get her. She acted like it was no big deal...just 10-12 more weeks!

The important thing right now is that we have a happy and healthy little boy at home. He is doing amazing. I am not. I just want the answers and feel like we have been so patient for so long and now I am starting to loose it!

I guess that is it for now! I will let you know if she calls me back, I am sure she loved the message I left for her, but come on. A nurse doesn't treat her patients family like this.