labs back

ok. So labs are back, and it still sucks. It could be worse, I guess.

Bryson's Immunoglobulins are improving, which is awesome to see, but they are just up and down. Right now everything that was up before, is down and what was down is up. Weird. He has no response to his Prevnar vaccine (AGAIN) that is the one that protects for pneumonia and meningitis. We are going to give him a pneumonia vaccine in January (when he's two) and see what that does, but my hopes aren't up. He had to get two boosters of Prevnar last year until he responded. Dr. Knutsen said that is pretty typical of people with hypogammaglobulinemia to have these rejections. His T-Cell and B-Cell function was all still pretty low, but up a bit. I know its awesome that things are coming up, I just want it to be OVER and I thought it would be.

The PLAN: back on antibiotics all winter, once a day. No more Mom's Day Out (bummer) which really sucks because he was JUST starting to adjust to being there. He started going in September and has been sick at least three times since then, so I guess that means NO MORE. Repeat labs in March. We still don't know for sure if this is something he's going to outgrow or not. He's thinking that the HI (hypogammaglobulinemia) will be something that will be outgrown, but we just aren't sure what's going to happen with his T-Cell stuff. I talked to our pediatrician about the T-Cell stuff and treatment for it is pretty aggressive, if needed. Hopefully they keep improving!

Last year he told me over and over that these kids aren't usually symptomatic until they are closer to two, and that's where we are at now. So we just hope that we have as good a winter as we did last year! Stay away flu bug! You are not welcome at our house! Bryson is doing well, its so hard to believe that this perfect little boy can have such crazy labs. Brian and I look at it as the labs are just numbers on a piece of paper, the important thing is that Bryson has done really really well, way better than they expected with all of this. So we move forward, like we always do, and pray that God keeps him healthy!

Thanks for reading, sorry I didn't update sooner. I was just trying to piece it all together myself!



That's all for now. I know it could be much worse, so we are thankful.

Long time No post! Immunology take 2

Wow...its been a loooong time since I have posted! Sorry to any faithful readers out there!

We had our appointment at Cardinal Glennon with Immunology last week. It went ok. I kind of felt down after the meeting though because its just not what I was expecting to hear. I thought that we would be wrapping all this stuff up and that's just not the case. Basically what he said was that he wanted to repeat all his labs from last fall again (which is sooooo much lab work!) He wants to check his T-Cell function and B-Cell function again. I was under the impression that if we started to see the immunoglobulins (From here out I will call them Ig's) coming up that the rest would follow, apparently that's not the case. He said that he is not as thrilled as I was with his Ig increase. That they are still all low. He is happy to see them coming up on their own, but he is concerned about the T-cell function too. So basically we just hurry up, get the labs drawn, and wait which we have become professionals at by this point!

We talked about how Bryson gets when he does get sick. He gets crazy high fevers (above 104) and always always breaks out in a rash the last few days of fevers. When telling him this he said "kind of like Parvo?" I was like, "well, I guess its like parvo, but the rash doesn't look like a parvo rash." He then went on to inform me that there is a form of chronic parvo. This I could have gone the REST of my life without knowing. I hate that stupid stupid virus. He said he doesn't think this is what he has, but we will have to watch him. It sounds like Bryson has more susceptibility to getting sick with virus' instead of bacterial infections. This makes sense because if his T-Cell function is off that is what mediates a viral response. If that makes sense to you!

So from here we just wait and hope that we continue to see his numbers increase and that everything is falling into place. He reminded me that last year he told me that usually kids with Immune Deficiencies don't usually become symptomatic until they are closer to two, so if Bryson's numbers aren't up then this could be a ugly winter at the Eisel house :(

"What do we call him?" I asked, wondering what his diagnosis is.

"Combined Immune Deficiency" is the answer I got. Because apparently he has two separate issues going on with his immune system. His Ig's are low and his T-Cell function is decreased. How do we take care of this all? Hopefully he outgrows it, these labs should be pretty determinate if we are going to outgrow it all or not. If stuff is still low, we have a few options, but not many and none of them sound good to me.

Keep those prayers coming! We have been so blessed in the past and hope that they keep coming our way.

Sorry so long! I will post when we have labs next week sometime! Thanks!

Loving Life

Things are going so well around here!

Connor is doing amazing in Second Grade. He has gotten 100% on all of his spelling tests and does so well with all of his classes. He has been in school now for almost 9 weeks. Its crazy. We decided to reward him for doing so well by buying him a fish tank for his room. Not just your everyday We are truely fish tank, a beast of a fish tank. I will post pictures once we get the fish in there. Its crazy big. I think both the boys will get a kick out of it (actually all 3 of the boys are getting a kick out of it!) He's still doing Karate and doing awesome with that as well.

Bryson is doing wonderful. He started in a Mom's Day Out group and cries when I drop him off, but I am told he stops pretty soon after I leave. Poor little guy, I know its good for him but I hate leaving him like that :(

Health wise all is well right now!! Whoooo HOOOOOOO! Bryson had his 18 month check up last week and everything is going well. He's just one BIG kid! He's in the 97% for height and head size, and 60% for weight. To funny.....what preemie???? We go back down to Cardinal Glennon to see the Immunologist in October for more labs. I am really curious to see what they are, I would imagine things are going in the right direction since he's been so healthy this year! Thank God! We are so blessed, I love our little family and am so proud of all my boys!

Nana (my mom) comes to town to visit this weekend and it will be so great to see her! I miss her so much and so do the boys!

Thanks for keeping us in your thoughts! That's about all for now!

ANOTHER scare

Sorry no posts lately. Our computer was down at home so I wasn't able to get on here.

Bryson is doing A-MAZING. I stopped his physical and occupational therapy. He's done so well on his own lately. We are just waiting for him to start talking, he is saying a few words but nothing to crazy yet. He's so much fun now, I love just watching him play. He follows up with Immunology at Cardinal Glennon in October, so we have a nice break until then!

Connor gave us a little (BIG) scare these last few weeks. To make a looooong story short, we ended up doing a CT Scan to rule out a mass on his adrenal glands. The docs were pretty convinced that was what was going on with him. Then after all that we find out that the lab had made a HUGE error. I'll say. His new numbers came back just slightly elevated, so we still had to rule it all out. What a relief to hear it was normal! That was terrifying, I couldn't sleep/eat. We had bee through ENOUGH. God was listening, because the way they all made it sound was that we will find something in there and its just a matter of where and how big. What a blessing that it was normal!!!!

Connor has started second grade and Bryson is getting ready to start in a Mom's Day Out group. YEAH!!!!!

That's about it for now!

Thanks for all the prayers and support. I was amazed at my reunion a few weeks ago as to how many people have been following Bryson's story on our blog. Thanks guys!

Hilton Head Island Pictures

The Eisel Family, Hilton Head Island, SC. 2009 Connor -7 years old. Bryson - 17 months old

Connor and Gregg Russell. He loved his show! So funny because I used to listen to this man sing when I was little! Now my kids are!

LOVE this picture.

Our little men.

Harbour Town. Hilton Head Island. My favorite place in the world!

The four of us. I know its hard to see. For some reason it transfered really small on here.

Brian and I on our last night in Hilton Head. I love this picture.

So there you have it. Some newer pics for our blog, finally! Like I said in the earlier post, this was an amazing, relaxing vacation. Much needed for us! Sorry the pics are so small, I can't figure out why they came up like that.

Vacation

Well, we finally had our family vacation long overdue. It was awesome. We took the kids to Hilton Head Island, SC. We had perfect weather and were able to enjoy the beach. It was so nice to be able to take Bryson with us and not have to worry to much about him getting sick (its ALWAYS going to be in the back of my mind, probably for the rest of my life!) He did great. He loved the beach and so did Connor. I can't sum up in words how good it felt to be there with the four of us, I finally felt like I could just breathe. This vacation was needed so badly by all of us!!

We came back with one small problem. Bryson will NOT sleep in his bed!! We made the mistake of letting him sleep with us in Hilton Head because his pack n' play was to small for him. Now he will not sleep unless he is in our bed! Even for naps! Its ridiculous!! I am trying so hard to break him of this habit, but its so hard. I hate listening to him cry and let me tell you, the kid can go on forever!! ANY advice on this topic would be much appreciated! I never had a problem like this with Connor. I think we probably just need to let him cry it out, I just feel so bad for him in there screaming by himself!

Healthwise, Bryson is doing great. We don't see the Immunology doc until Oct. Hopefully the low labs come up on their own by then and we can fianlly be DONE!


On another note...we probably need to start speech therapy with Bryson but we have a problem. Our insurance company has screwed us! Yes, the insurance company is the HOSPITAL THAT I WORK FOR!!!!! Thank you very much!!!! GRRRRRRRR. It makes me so angry. Its a loooooong story, just know its an ugly situation and I am really trying to keep my cool about it and get it straightened out but COME ON!

GOOD NEWS

Normal. Now that is a word I never thought I would hear when talking about my Bryson's health. His labs came back and everything was great. Two of the three immunoglobulins have reached normal ranges, just one is still behind. That's great news....at least he is able to do it on his own!! They said that we aren't totally out of the woods, sometimes these numbers can spike up in then drop down but I am pretty sure we are done. They still want to follow him, but we don't have to go in now until OCTOBER! Can you believe it?

I was so happy to get this phone call I cried....I feel this weight is lifted off. Its just awesome.

What a crazy journey its been and I am so glad that we are seeing the light at the end! Thanks for all the support and prayers!