New Doctor

I have to say, I am a much happier person then I was with my last post. Sorry about that, I think I just really needed to vent.

I don't think I have mentioned her before, but there is a mom that I have become pretty close to who has a son who has the same type of neutropenia Bryson has. She contacted me through my blog and we have become pretty close. She did a little research after I vented to her one day and she found a group online that is people who are affected by parvovirus. I just desperately wanted to talk to someone who had been where we have and who could give us an idea of what to expect. If we were done worrying, that type of thing. I ended up contacting this one mother who is infected with chronic parvo. She informed me that there is a doctor in Denver who has done a lot of research on parvo and he is a pediatrician. I called their office and spoke to his assistant for a while. She was so nice. I told her Bryson's history with parvo. I told her how well he is doing now, and how great his counts have been. She brought a new insight to the table that none of us had really thought of. Their thinking in Denver is this...Bryson may be doing amazing right now, but what happens this winter (which has been my concern) when all the funky virus' start popping up. How will his body react when exposed? They have found that most kids/adults affected by this virus so badly have some sort of underlying immune system issue. Why did Bryson's body react the way it did in the first place? Why are other babies who are exposed to this virus in utero able to fight off the virus and Bryson wasn't able to? She suggested doing a immune system work up. We could travel out there (ironically, I have family out there) but we decided to do what we can from here and obviously, if needed, we would travel if they felt that was necessary. I spoke with our ped on Friday about all of this to see what she thought. She was impressed and excited about the doctor. She said we should do it and definitely do it before winter time so we can be more prepared. She said that hopefully we find nothing, but its worth it for all of our piece of mind instead of worrying all winter long! The office in Denver called our ped and left a bunch of labs that they suggested doing and they said they would be more than happy to interpret them if needed. I am just anxious to get to the bottom. Hopefully we find nothing and it was just a fluke thing that happened in utero. That would be great! I am just excited that this doctor actually exists!

Bryson had a very busy week...he rolled over!!! YEAH! He is also starting to sit up on his own! I think he's doing awesome. Our pediatrician really wants us to try to get approved for First Steps again, so we will see what happens there. I am thrilled with how well Bryson is doing, especially since we started PT. Good job buddy!

That is all for now. Connor started soccer again and is doing great in school!

Neuro

We went to see the neurologist on Tuesday. Bryson's PT had noted to us that Bryson has less strength on his left side, both his arm and his leg. We have noticed this over time, but didn't really think that much of it. Then the therapist asked about his verbal skills...which are pretty non-existent. Bryson really only makes noise when he is hungry or tired (crying) a few months ago he was starting to babble and has since stopped. This was a little alarming. The therapist told us that if over the next few weeks he doesn't improve she was going to have us go back to the neurologist. I said forget that, and went ahead and called the neurologists' office. They got us in right away and we met with him on Tuesday. The short story of it all is this.... yes, Bryson has significantly more strength on the right side of his body, and yes he isn't developing his speech/oral skills as well as he should be. The doctor thinks that when he was having his seizures (in the PICU) that something happened to the right hemisphere of his brain, that is what is causing all of this. He doesn't think its anything to be to worried about, we will just follow him and hope that he can pull through like he has done so well in the past with everything else! We will continue with therapy for now and work with him at home.

The frustrating part for all involved is that there is NOTHING out there on parvovirus like Bryson had it. So no one can tell us that "yes, when your son is two years old, he will be perfectly fine." and that is what I want to hear so badly. I want to talk to a mom who has been through this, or something similar, and hear her say that her child has turned out fine. I find it so hard to believe that my little man is the only one out there that has had to struggle with this. Its just not fair. The doctor said that he wishes that he could say that he has taken care of kids like him in the past, and this is what we can expect, but he can't. He said he wished he had a crystal ball to look into so he could tell us that everything will be fine in the future, but he can't. He said that if he had to guess, he can't imagine Bryson not coming out of this rough patch fine. Its just getting him there. We are going to follow up with him in a few months, if he is still showing delays we will do his MRI then. The doctor really wants to get an MRI when Bryson is 18 months to see what it looks like then, since by the time a child is 18 months old all the neurological pathways are in their places, but he will do it earlier if we need to. He said that sometimes, when kids stop being vocal, a lot of times they are having issues with hearing, so we will be doing a hearing test later down the road too. We do our own all the time with him, and he turns his head just fine to sounds that we make, so I can't imagine it being bad. The doctor said he may just have a small amount of hearing loss and that can cause this too. That is a bridge we will cross if we have to, but I believe with all my heart that he can hear just fine.

I know this was a long post, I am just so frustrated right now. I know that things could have been worse for him and that we are so lucky that they aren't, but I just want him to be fine. I just want to walk into one of these appointments and hear "your son is going to be just fine. We don't need to see you back anymore." I want someone to tell me that he is going be able to hold his own bottle, roll over, pull up, crawl, walk, ride a bike, climb trees, run, play sports, read books and talk to us without any problems. I guess Bryson is writing his own story and I just need to be patient and have lots of faith that everything is going to work out like its supposed to. I am just getting tired of being strong, I feel like things move along so great for a few months and then BOOM...another obstacle for us.

I am going to end this post now, I have erased so much of this, because I don't think anyone really needs to read me venting and believe me, it wasn't pretty. Sorry for the length of this post!

FINALLY!

We finally got Bryson started on his PT. This has been the most frustrating process E-V-E-R! First, we were told he would for sure qualify for First Steps, then we were told he wouldn't. The therapist that evaluated him for first steps said that he defiantly needed to be in the program, but the case manager said there was no way to qualify him because even with his medical history for every negative he has had the most positive outcome....he was a preemie, but he weighed 5-9...he had seizures, but he isn't on any meds. It was so frustrating, so I went behind the scenes while this was all going on and made him an appointment with the child development center at St. John's. They saw us today and the therapist was very nice. She said that Bryson is very tense, and is working much harder than a baby should to do certain things. By doing some exercises we should hopefully be able to help loosen him up. Its primarily his left side that is behind, which Brian and I have noticed a lot over the last few weeks. He doesn't use his left hand nearly as much as his right and he doesn't reach for his left foot ever. Hopefully we can get that straightened out and get this little man on track! He still isn't rolling over or pushing up and he is six and a half months old now! He does hold his head up well and he is reaching for things so that is good. I guess we will see how it all goes! Every Thursday we will be at therapy for an hour and a half, fun times! She said for at least the next three months and we will see where he is at after that.

On a Connor note....He lost his first tooth! Yeah Connor! He even pulled it out himself! I am so proud of him. We took him to the candy store (I know, kind of hypocritical, isn't it?) and let him pick out whatever he wanted. Of course, the tooth fairy came and left him money also. He is so excited! Good job buddy! He is such a great big brother. He makes Bryson laugh and laugh like no one else can. Its so sweet!