what a wonderful week!

Things have been great around here. Bryson is crawling all over the place. Connor is doing great with his school work.

We went yesterday to the neurologist and he said that we didn't have to follow up with him anymore unless we felt like he needed to be seen. He said he would love to know what the outcome of all of this is. He has done a ton of research on Parvo and said that he thinks Bryson is just such a "unique" case. He said that there is such a subtle difference now between his left and right side that he should be fine. That was awesome to hear. Brian and I have both thought Bryson has been doing so much better these last few months, I think therapy has really helped him more than we thought it would. The therapist also said that we don't have to come once a week anymore! She said just once a month until he starts really walking would be fine as long as we were ok with that. I told her we were just FINE with that. Its been a week of great news for us! We sure have a lot to be thankful for this holiday!

We also had his prevnar titers redrawn (the vaccine that he rejected to begin with, and then we regave it about three weeks ago) to make sure that he accepted it this time. I was brave and took him to St. John's since we had a doctor's apt. there anyway and it was just one test not a whole series of tests. They got it on the first try! I was impressed, usually at that lab it takes several times and we end up calling pediatrics or NICU to come and do it. That is why I was done going there for lab work. Oh well, it worked out just fine this time!

I hope everyone has a great Thanksgiving. Please keep Bryson in your prayers as we wait for the rest of his testing to come back! Thanks so much, we really appreciate it!

One back

One of Bryson's tests came back and the only reason I know this is because we were at our pediatrician for Connor and she mentioned to me that she got one of them but had no idea what it meant. She gave me a copy (I keep all of his labs) and it looked like another language. I called the Immunologist and the called me back the next day. They said that the Dr. wasn't sure what they meant. They were defiantly abnormal, but he wasn't sure what they mean. Great. That is what every parent wants to hear. He wants to wait until the other tests come back (another 2 weeks thank you very much). So until then we just sit and wait, which we are getting pretty good at doing!

That's it for now!

Halloween Pictures

We still don't have anything back from Bryson's genetic testing. Things have been good. Bryson is doing great with his therapy, he started crawling. Other than waiting on these tests to come back (one was sent to Cincinnati Children's and one went somewhere in Maine) we are pretty quiet.

I haven't posted Halloween pics yet, so here they are! Bryson was a bee, Connor was a ninja and our friend Jordyn came over and she was Abby Cadabby from Seasame Street.

I will post once we get these back! I am guessing next week sometime. Keep Bryson in your prayers please! Thanks!


Bryson the bee!

Connor the ninja, Bryson the bee and our friend Jordyn abby caddaby

Bryson and Connor at the Pumpkin Patch

Bryson at the Pumpkin Patch

You have got to be kidding me...

The lab at Glennon called me today and I had to take Bryson back to have the test redrawn. They put it in the wrong type of tube! So annoying. Poor baby had to get stuck AGAIN. He did great, but I was just so angry!!!! They gave us a gas card and a gift card to the gift shop. Great. Thanks for that. Seriously, now we have to wait even longer to get these back!

GRRRRRRR

labs drawn, back to waiting!

We FINALLY got the genetics labs drawn today. We also had a meeting with Dr. Knutsen because Bryson broke out in this nasty rash all over. We think its from the Omnicef so we are going to try him on some Augmenten instead. We'll see. Dr. Knutsen spent time with me going over his labs. He explained to me what we were looking for and its pretty scary. X-linked Hyper IgM is the name of the disorder.
http://www.immunedisease.com/US/patients/IDF/hyper_igm.html

Its kind of scary, the doctor said that if he does have this he will need a bone marrow transplant. Hopefully its not what it is. He said the other possibility would that it would be some sort of transient agammaglobulinemia and he will outgrow it. That would be nice.

We should have some sort of idea in the next week or two. I'll post when I know. Until then, prayers are appreciated!

FYI:Bryson is crawling! It is so cute! Good job buddy! I will try to post video later on.

On a Connor note, today we met with a psychologist about him. He was diagnosed with ADHD (no surprise to us) we aren't sure which direction we are going to go with this news. I don't know how comfortable we are with starting him on meds. He is such a fun kid and we really don't want to change that about him. We have some thinking to do on this. I guess, when it rains it pours.

Are you serious?

I got a phone call on Monday night from the nurse at the office (yes, the same nurse that told me everything was OK when it wasn't.) She had something come up with her family for Tuesday(...hmmm...ironic that its election day? ) and wasn't going to be able to be there for the testing for Bryson. She said she has to be there to do it. She wanted to push it off until next Tuesday. I said no way. We have waited over a month to get this far and it will take three weeks or so to get the results back. That would mean we wouldn't have these tests back until December. Absolutely not. I somehow finagled going in on Thursday. I called last night because of course, I forgot that Brian and I have to go meet with a doc for Connor (ADHD) for two hours to go over his stuff. I am hoping we can still do this all on Thursday, just push it into the afternoon. We'll see. Its never easy at our house!

I know, I know...I need to get a real planner. I write it all down on the cards they give me at the office. I need a big planner. This is my fault for not being more organized. No need to say it, I am already aware.

One more note....seriously, President Barack Hussein Obama? Good job America. At least I got some free coffee out of it all ! Thanks Starbuck's