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.

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

Wrong answers, back to square one!

GRRRRRRRRR. That says it all.

Dr. Knutsen (the immunologist at Cardinal Glennon) called me today. I am so glad he did. I had a ton of questions for him. I told him I didn't understand why we were still doing this Genetic Testing if everything else came back ok. He said "because everything didn't come back ok." He told me that Bryson's T-Cell's had a significant decrease in function and his Memory/Helper B-Cell function was low. He said he has a total absent response to the prevnar vaccine (pneumococal) which is rare to see a complete absent response. I was so frustrated. I told him that his nurse told me everything was ok except his immunoglobulin function was low and that was probably from parvo. He said no, that everything else was off as well. I told him I was still waiting to hear if we got the approval to do the genetic tests and he said he had a note from the nurse saying that she got the approval at the beginning of this week. Why the hell didn't she call and tell me this? I would of had him up there that day to get it all drawn! GRRRRRR.

I asked a ton of questions and didn't seem to get to many answers from him. He said that he would love to give me answers but just can't until he has all the other stuff in front of him. I asked him if this would be a chronic problem or if we would have to do more IVIG, and he said we would probably be looking at doing IVIG down the road, but can't answer anything else until he has the pieces to put together. GRRRRR. I understand this and what he is saying but I feel like this all totally came out of left field and I was just feeling so good about him with everything and now we are back to the damn waiting game. GRRRRRRRRRRR!!!!

That's all I know for now. Bryson got his Prevnar booster yesterday so we will redraw his titers in 3-4 weeks to see what his response is. (I saw it leaking out of the hub of the needle and his leg after the nurse at the office gave it to him, so my guess is that it will still be low because it all leaked out of him!) Anyway, we started him on the Omnicef like he wanted so hopefully that will keep us well!

Bryson's New Trick...

What a fun day we had at the Eisel house yesterday.

Bryson learned a new trick...how to turn completely blue! I have never been so terrified in my life. I wasn't even this freaked out when he was having his seizures or in the PICU. This was awful! I had the phone in my hand and I was getting ready to call 911 when he finally pinked up. I didn't want to take him to the ER, because once it was over he was fine and I knew they would just poke him and stick him to no end so I took him to the pediatrician's office and they said that he has now become a breath holder. GREAT. I need this like a hole in the head. She said it can get pretty bad, some kids put themselves into seizures and passing out and that it will just get worse as he gets older. She said sometimes you have no choice BUT to call 911. This is just great. He did it again today during therapy, but not as bad. It sure scared the therapist, though. She was ready to give him oxygen. I guess kids tend to do it more when they are angry or upset, in both cases for him he was crying. I knew kids could do this but had NO idea it would be this terrifying. Lets just add one more thing to our pile!

Otherwise things are good! Bryson has been really healthy. We are starting him on the antibiotic as a prophylactic and are STILL waiting to get the genetic tests done. Its very frustrating.

Hope everyone has a Happy and safe Halloween!

OK

Ok. So here is the news...

#1 They want us to repeat his prevnar vac. That is the one to protect against pneumococcus and meningitis and blood stream infections. His titers were low for that (Which we already knew). So he will get the vax next week and then redraw the titers in four weeks to make sure they went up.
#2 They want us to start him on Omnicef (antibiotic) once a day as a prophylactic treatment. We don't really like this idea. We have an appointment with our ped next week so I will talk to her about this one. His immunoglobulins were still all really low. So still, no daycare or crowded indoor public places.
#3 The B-Cell labs came back ok, but they still want to do the genetic testing...this I don't understand. I have a lot of questions for them. I don't get why we need to still do this. Unless there is something that I am not aware of, if his B-Cell tests came back good then why do we need to do this? I don't get it. I talked to the nurse yesterday, and I would really like to talk to the doctor. Those of you out there who have been through a lot of doctors like we have, know its not so easy to get an actual doctor on the phone!
#4 I guess that's it for now. We are still waiting on the approval to get the genetic stuff drawn. We have an appointment with our pediatrician next week. Those two things are what we are waiting on.

Really, I don't feel like we really got ANYWHERE with all this stuff. I guess that's good, but its just so frustrating. Not that I wanted to hear that there is something really wrong with my baby, but I just feel like we keep putting him through all this testing and don't really get any answers except it all turns out to be related to our good ole' friend PARVO.

I'll update you all as we get more info. I think that's it for now! Thanks for all the prayers!

NOTHING YET

We still haven't heard anything about Bryson's results. I called last week and did find out that his ANC (neutrophil count) went to 1900, which is not the direction it should be going in! ARGHH. I will probably call on Wednesday or Thursday to see if they have the rest of his stuff back. That's it until then! Thanks for all the kind words and thoughts!

Bryson scooting!

Bryson is scooting! Yeah!! I think he looks hilarious when he does this. You can really notice his left leg not working as well as his right. I think that with time he can get it there!

Cardinal Glennon

Today was our big appointment. Poor Brian was to sick to go with us, so he stayed home in bed. I really liked the doctor and his staff. Basically, he thinks that Bryson has some sort of B-Cell issue. He gave me the name but I can't remember for the life of me. I know it had something to do with lymphocytes. He didn't give me much information after that, he said he wanted to wait until after he did some more labs to see for sure. He said he doesn't like giving out to much information about a disorder unless he has the definitive diagnosis. Which just drives me insane. He did talk about his neutropenia, and said that this diagnosis would fit right in and would be the main reason for his neutropenia issues. Not Autoimmune Neutropenia as we thought it was in the past. He said even though his numbers have been fine lately, he said they can really fluctuate still so he wants to continue to do frequent CBC's. He wants to do genetic testing on him as well, which we weren't able to do today because we have to wait until insurance approves it. They took so much blood, again from Bryson. However, it was like night and day compared to St. John's lab. The first thing they asked me was how much he weighed and determined that they couldn't take all the blood that the doctor had ordered, but we should be able to get the info that we need from what they did take. Plus, he will probably be going back next week for the genetic testing and we can get the rest then if we need to. At St. John's they took way more than they did at Cardinal Glennon as far as blood goes. I knew it was to much. Also, they totally numb the area with numbing spray before they stick, so nice. He still was pretty pissed off, I think it was us holding him down that made him so angry. Anyway, he did great. I am just frustrated, because its more waiting since this stuff will take about two weeks to get back. ARRGGHHHH. I just want the answers. I want to know what it is, and I want to know what to expect for him. I guess its in God's hands now! Lots of prayers would be appreciated!

We have been so lucky. Bryson has been so healthy and hasn't had any issues yet. Let's hope its a good winter...no RSV please!!!

More Pictures

I thought I would post some new pics of the boys. We really don't have any new news around here. We go to the Immunologist down at Cardinal Glennon on Thursday, so nothing really going on until then!

Brian blew dry Bryson's hair after his bath...this is what it looked like afterwards! So funny!

Bryson loves his cookies...maybe a little to much! What a mess!!

The three boys at the Zoo.

Bryson in the tub. I think he looks like a turtle when he makes this face.

My new favorite picture of the two boys.

No news

Nothing new to report really. We are just waiting to get into the new doctor at Glennon, and that won't be until Oct. 9th. Seems like forever away! Bryson has been doing great. He cut his first tooth and has been fussy from that, but otherwise doing great. Therapy is going really well. He is now rolling over and sitting up on his own. Its awesome.

I spoke with the old immunologist that we went to a few weeks ago and didn't like what they had to say. Their solution was to give Bryson boosters of his vaccinations that his titers came back low on. That made no sense to me. I understand that means that he didn't take to the vaccinations the first time he got them, so why do it again? Why not try to figure out WHY he didn't take the vaccinations? They didn't have any answers for me, and didn't even address the critical low labs that came back. I was pretty pissed. I just keep thinking thank GOD for our pediatrician and thank GOD I work in a hospital so I know better with some stuff. What if I didn't know better? Would this all just get ignored? Scary. I spoke to our ped about all of this and she was shocked. She doesn't want to vaccinate him until we see the immunologist at Glennon, which I agree with. She also wants to know WHY this happened the first time, so I know I am not crazy in thinking that this doctor was wrong. Not only am I unhappy with their answer to everything, (which to me is just covering it up...not fixing it) but their staff was so rude. Never in my life have I been so uncomfortable in a doctor's office (and believe me, we have been in our fair share!) Also, they NEVER called me with his results. I called them four times in two days, knowing that they had his results because I sat there and watched the lab tech fax them over to them, and they would not call me back. It took one week for me to talk to someone in their office about his lab work and the never even mentioned the low labs that our pediatrician was concerned about. The system is so messed up. Anyway, enough of me venting about that. Long story short is, there is nothing new going on with him until we go and see this other doctor at Cardinal Glennon.

Connor is home on cycle break for the next three weeks...ahhhhhh!!!! I think I am going to go crazy! Don't get me wrong, I love being with my kids, but he likes to be entertained ALL day. I will survive, lots of trips to the zoo in our future!

Here we go again!

Poor Bryson! That's all I can say.

We went to an immunologist here in St. Louis and they ordered a BOAT LOAD of labs on the baby. Nine giant tubes of blood! Poor little man! I made the mistake of taking him to St. John's for this and that is the last time I will do that. I love where I work, but for stuff like this Brian and I decided he needs to go to a "Children's Hospital". They stuck him so many times it was crazy! Finally I called one of the NP's that I work with to come down and try to do it and they did two art sticks and finally got it in his scalp. It was awful. I felt so bad, not to mention that I pushed for this work-up to be done because I wanted to make sure everything was ok. Talk about guilt. It turns out my gut instinct was right on.

Bryson's CBC looked awesome, except the fact that his ANC count is going back down. It is still within normal range but has dropped from 4500 to 2000. Why?

One of the panels they drew was an immunoglobulin panel, so it checked his IgG, IgA and IgM levels. The immunologist told me she would guess that his IgG would come back low, but the other two should be fine, especially since he hasn't been sick! Guess what...all three were low. Now I couldn't begin to explain what all that means, I just know its not very good. I know it means he has a poor immune system. Our wonderful pediatrician called me this afternoon and she said she wants us to go and see an immunologist at Cardinal Glennon. Not that I don't like the one we were going to, but she is fresh out of residency and I do NOT like her staff at all. They were so rude to me. I figured I could handle it for a few visits, but it turns out this is going to be a process so I don't want to deal with them and I shouldn't have to. Plus, we want the best for Bryson. The thing that stinks is that this is all out of our network for insurance, but we will find a way to manage like we have done in the past. I called the doctor down at Cardinal Glennon and they can't get us in until the middle of October, I know our ped wants us in asap, she tole me to call her if it was going to be a while to get in and she would call for me. Hopefully we get in sooner. I just want this all addressed.

Some of the other tests they ran aren't in yet, I don't even know what half of them mean. I know they will take over a week to get back. So I guess we will wait and see!

I am sure it will all come out to be ok. I am just really hoping that he doesn't need to have the IVIG like he did in the past, that was where all our problems started last time.

I will post once we know more!

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!

Cardiology

We went for Bryson's cardiology appointment yesterday. His echo was totally normal! Dr. Bruns said that the hole he had before was totally closed up, which is a really good thing because if it hadn't they would have to start thinking about repairing it. He said that Bryson's legs and arms turning purple is ok. He went into a long explanation about why it happens, and to be honest all I really heard was that it was "ok". He doesn't ever need to see Bryson back again! Yeahhhh! Finally a doctor that is totally finished with us! I was so happy I almost cried. I know that sounds silly, but I finally feel like we are headed in the right direction and we have our baby to enjoy now! Its a blessing. We are so lucky, yes we have been through a lot, but all the bad that could have been isn't. It really could be much worse! We are still watching his blood counts every few weeks and so far so good with that as well! We hope they continue to stay way up like they should be.

Its getting harder to watch him have labs drawn, they used to just stick his little foot and now he has to have it drawn like an adult, venous. He puts up a really good fight now! I don't blame him one bit. As hard as it is to watch I have to remember how lucky we are. We are so lucky to have our baby at home with us. We can tuck him into bed every night and kiss him and hug him all we want. I can hear him over his monitor blowing raspberries and laughing at his brother. There are many parents who can't do that. I am reminded everyday of how amazing he is and what a miracle he really is to our family.

Busy, Busy, Busy!

I hope everyone had a fun and safe Fourth, I know we had a blast this year with the boys.

Bryson has had a pretty interesting week. He had labs drawn on Monday, which were great. I was so excited to hear how great they were! But that night he started running a temp and I remembered what the hematologist said, he told us that what will happen when he gets sick is usually the counts jump way up and then can go back down....in most cases. Hopefully not ours! But we just aren't sure how low being sick can make his counts. I guess we will find out!

We did get approved for the PT services through First Steps, which is great but also bittersweet. This means they saw enough wrong in him that he needs the services. Oh well, we will work on it! Our physical therapist wants an occupational therapist to get involved with him as well to help him with his feedings, he does get a little gaggy with them.

We saw our general ped today, she said Bryson looks great. He is in the 75 %ile for weight and his head is >100%ile! Not to shabby for a premiee! She is a little concerened about his legs and arms turning blue, so we will be doing another cardiac echo. She said she really thinks that it might just be how his circulation is. We hope that's all it is! I am sure it will all be fine, its just kind of freaky. Better safe than sorry!

I think that's it for now. This week has been nuts! Connor is off school and summer school is finished so he is home with me for the next week and a half, which is so nice having him here but it sure keeps me busy! I am ready for school to start back up.

Thanks again for all the continued prayers and support!

PICS!

I realize that I haven't posted any pics in a while...here you go!



Brian and Connor at the Zoo, someone is getting sleepy!!!

Bryson five months...wait, who's the Boss? With those dimples, you can bet he's the boss!

Daddy and Bryson at the Lake

Brian and Connor swimming at the Lake

Bryson at the lake, he loves being outside and had a blast watching Connor and Daddy swim!

PT

Bryson met with his Physical Therapist today for the first time. She was very nice and had lots of advice for us. She is pretty sure that he will qualify for First Steps therapy. Kids generally have to be at least 50% delayed to qualify so I was pretty surprised by this. After doing her assesment and telling me what he should be doing and then actually seeing what he IS doing really was a shocker for me. I thought he was doing so well, but I guess with him being a premiee its just how it goes. Not to mention the first few months of the kids life he's been in and out of the hospital! She said we really need to work on his arm strength and he turns his feet the wrong way. He also isn't grasping like he should or rolling over. Those are the biggies, there were lots of smaller things as well, mostly upper body stuff. She was also pretty concerned about his legs. Whenever he stands upright his legs go purple, his arms also will get really mottled. I have noticed it and did mention it to his pediatrician a few weeks ago, but I promised the therapist I would call them and let them know she is concerned with this. I think it has gotten worse over the last few weeks. So I guess I will call this afternoon, I am sure its nothing major, we have checked out evey system there is to check! I will find out for sure if we qualify or not at the end of the week.

We did finally have Bryson Baptized. I was so relieved to finally be able to do that and have all of our family and friends aroud us on that day was great. For many of them it was their first time meeting our little man! We are so lucky and blessed to have the support that we do! Thanks so much to his wonderful Godparents, Ellie and Timmy. We love you both very much!

That's all for now!

Sorry....

Sorry no posts in a while, I just realized its been almost a month! Yikes! The people from first steps, which is who we are going to TRY to get approved for therapy through, came out yesterday and met with Bryson and I. The case manager said that in order to qualify for their services Bryson would have to be at least 50% delayed in his gross or fine motor skills. I don't know that he is that behind, but the lady said that by watching him herself she thinks he might be pretty close. If we don't qualify then we will go to a child development center, which will cost us much more but obviously whatever we have to do we will. The next step is that a thearapist comes out to our house and does her assesment and then gives us some tips of things that we can do to help him. That is what is so great about this program, they come out to our home and do everything and they really focus on working with the parents and getting them involved with the therapy. If we don't get approved, then that is a good thing! That means that Bryson isn't super delayed, it also doesn't mean that we aren't going to get him the treatment that he needs. So now we wait until next week to see where we go from here!

On a side note, we are having Bryson's Baptism this weekend! Finally! My mom is coming in from out of town and we are expecting alot of our family to be there, it should be a great time and just a great celebration of our little man! Thanks so much for the continued support and prayers, Bryson is doing amazing. His counts last time were so great, we will be getting them again in a few weeks!

Therapy Time

We had Bryson's counts done yesterday. They were the best ever! We were so excited, but nervous still. They type of neutropenia that Bryson has can make his ANC go up and then down. So who knows. It can be up one week and totally down the next. At least for now its up, way up and hopefully stays there for a while so we can get out more! The other part that we aren't to sure about, since this is all autoimmune is what happens if he gets sick, will he have to go through this all again. We aren't sure, but we are sure that its only a matter of time before he gets his first sickness so I guess we will wait and see. For now he's happy and healthy, so that's great news. His hemoglobin was 11! That was amazing for him! YEAHHH!

So, we went to the pediatrican's office, a place where we have been avoiding due to germs, and Bryson got his vaccinations. Poor baby. After the doctor evaluated him she said she thinks he needs some therapy, PT/OT to help him out. He is pretty delayed with his motor skills. I am getting that set up to come to our home and do it, which will be nice. Hopefully that helps him out. He also has a pretty flat head, we do lots of tummy time, but with his reflux the only really comfortable positons for him are upright, plus he can't lift his head off the ground yet so tummy time only lasts a short time. If it conitues to get worse by the next time we see her, then we will go see a cranio/facial surgeon and see what he has to say. We may be looking at a helmet or something, who knows. That is just cosmetic, so I don't really care, as long as physically he is doing well. We also get to start our fatty out on some baby foods, veggies first. So we will give that a try tonight. Bryson weighed 15 lbs and 5 oz! 60 percentile! Not to shabby for a 32 weeker! His head was in the 90 percentile! What a bruiser! I love it!

That's the latest. We are pretty blessed that things are going so well for now. We are also so fortunate that its finally nice outside so he can get out to enjoy the nice weather! I think if it was winter time we would definatley be staying in our home! We are off to enjoy this great day!

Thanks again for the continued prayers and support!

Vaccinations

Things are still pretty nice around our house! Bryson is doing so good. We see his pediatrician this week and they are actually talking about doing his vaccinations! We are going to do counts on him on Wednesday morning so that we can see if doing his vaccinations will be ok. As long as his ANC is above 500 they will do it. Brian and I are kind of on the fence about doing these right now, but we trust our doctors. Other than that there really is nothing to report from Mr. Bryson....

Connor has a kindergarden graduation this week, I can't believe how fast time flies. He is so much fun these days, I love it! I love seeing the two of them together, its so sweet! That's really it until the later part of this week...think high numbers!

Quiet for once!

Sorry I haven't posted in a while. Things have been really great around here. Bryson is doing so well and we are just starting to feel like we can relax and enjoy him! Its so great. We don't have to do labs again for a while and we don't see another doctor until next week sometime, crazy! I almost don't know what to do with myself! We are still following Neurology and Hematology and have an apointment with cardiology in a few months. Bryson has a ASD in his heart, usually they close up on their own and so they want to see him back in a few months. This was one of the things that got put on the bottom of our list due to all the other stuff going on with our little man, especially since there is nothing we can do about it right now and it doesn't cause him any distress.

This Mother's Day was probably the best that I could have ever asked for. I had my two sons to spend the day with, at home. (Until I had to go to work). We did go over to Brian's mom's for a while before I went to work, but I am just so greatful that we were all together. I just have so much to be thankful for this Mother's Day! We had our first family picture with all four of us in it! That is all I wanted for Mother's Day and I got it. I hope all the mom's out there had a great day, we deserve it!

More labs...

We did labs again on Saturday and they were the best that Bryson has had! Things were still low, but they were good for him. We are hopeful that they will continue to go up. The hematologist did tell us that this type of neutropenia does tend to go up and down, but we are hoping that it will stay up. Another thing that's great is our little man doesn't have to be stuck again for a month! Yeah!! Things should finally be kind of quiet around here with doctors for a while. We should only have to see his pediatrician in a few weeks and all the specialists are for about a month again.

Thanks again to everyone for your thoughts and prayers, they mean the world to us!

Preemie Moms

Someone sent this to me and I really like it....

How Preemie Moms Are Chosen(Adapted from Erma Bombeck)

Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Beth Armstrong, son. Patron Saint, Matthew.
Marjorie Forrest, daughter.Patron Saint, Celia.
Carrie Rutledge, twins. Patron Saint ... give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles. "Give her a preemie."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it.I watched her today.She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own.She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect.She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods.
"If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."

Neurology

Ok, so today we had a follow up with the neurologist. Really nothing to exciting. He said that Bryson isn't tracking as well as he should be with his eyes (Brian and I aren't so sure about that) but that could be due to prematurity so we will give him some time with that. He just wants to see him back in 6 months (YEAH! Finally a doctor that doesn't want us back in 1 week!) Other than that we are just about done with the neurology stuff!

Bryson is doing well. His reflux is really acting up, but other than that he is doing good. He has awesome weight gain and head growth. He is not getting his vacinations right now since his counts are so low. I am kind of starting to go crazy being at home all week but I guess I will count my blessings, at least we are AT HOME! We do take him out some places with us, especially if its nice outside. But for the most part we are trying to avoid public places.

On a Connor note...his birthday is this weekend! He is going to be six years old!!! I can't believe it. I am so proud of how good he is with his little brother, he just loves him so much. He will just sit and stare at him. Its so sweet. He knows to wash his hands really good before he touches him and to only kiss him on the top of the head. Connor is such a great kid. We are so lucky to have him in our lives!

Socks from Bryson

Ok, so this may sound crazy but I think its a pretty good idea. And maybe its something that you just can't understand unless you have been where we were....

The PICU at St. Johns doesn't have any socks for the patients. I know you may be thinking so what but when your baby or child is hooked up to all different monitors the only thing that they can have on their body besides a diaper is socks. And sadly they aren't supplied. I just feel like its a bit of a comfort and slice of normalcy when you are going through some drama. I just wanted to do something from Bryson. I noticed that there is a basket in the PICU to collect socks for the kids. I thought it would be nice to get together all different sizes, especially the really small ones, and give them to the basket. I noticed that there were mostly larger sizes in the basket and the ones they gave to Bryson were way to big for his little feet. If anyone wants to participate you can either mail them to me or give them to me when you see me or if you work with me you can leave them in my mailbox. I will give them to the nurses back there from Bryson!

Thanks so much!

Final

So we got the chromosone study from Bryson's bone marrow back...its a boy! Just kidding...

Dr. Hanson said his chromosones all looked normal, there was a few abnormal things, but he said that is pretty typical of the autoimmune neutropenia. I have been doing lots of research on this and hopefully it goes away on its own. We just have to really watch Bryson and make sure that he doesn't get a fever. We will be doing counts again next week sometime. We are relieved that this isn't anything "life threatning" like we were all afraid of. The only scary thing I guess, is that this is autoimmune, so his body is attacking its own neutrophils (the bodies first line of defens against an infection) and there is no telling when it will go away or if it will ever go away. Time will tell I guess!

We went to the GI doctor and she told us to cut his medicine does in half. We did that and Bryson became so so fussy and miserable again with his reflux. We put him back on his old doses. I don't see why we should mess with a good thing right now and have him be miserable again! We will be following up with the neruologist this week also. That is all for now! I guess it seems like alot, but we just look at one thing at a time and its alot less overwhelming!

Autoimmune Neutropenia (???)

Ok, so I know I haven't updated anything. Sorry. Its just not been to exciting around here, which is good for once! We did Bryson's labs today and his hemoglobing went up to 9.4! Yeah!!! Dr. Hanson said we SHOULD be out of the woods as far as needing another transfusion goes. But, his ANC (the white count number) went down. Dr. Hanson called me (at 830 at night, which scared the hell out of Brian and I!) and he told us he is so happy to see his hemoglobin go up. He said that he thinks that what is going on with Bryson's ANC is that he has "autoimmune neutropenia" this is something that is a response to a virus or infection (shocker!) Here is a link that was pretty helpful...http://autoimmunedisease.suite101.com/article.cfm/autoimmune_neutropenia

For now we aren't going to do any of the threapies, we hope that he can come up on his own, plus we are waiting for the chromosone part of the biopsy still. The key with him is keep him from getting sick. Since its starting to get nicer out we can probably take him out when we need to, but its just not really worth the risk right now of him getting sick. Since he is so little a simple cold could put him back in the hospital!

So the next question is how long is this going to go on for? We got kind of a vague answer, I think no one really knows, which is very frustrating for us! Dr. Hanson said a few months to a few years! We can stop sticking Bryson as much now too, he said we just need to grab a count about once a month. However, knowing Brian and myself, we will be doing it more frequently. Our pediatrician is all about putting our mind to ease, and we will rest better knowing we are ok! I think that is something we are going to have to get used to, not know what his counts are every week...so we probably need to be eased into that once-a-month thing! God love our pediatricin, she has been awesome to us!

So that's the latest here, check out the link...it was very helpful and makes a lot of sense for our little man! At least we are out of the woods with the really scary stuff! No one likes to see their baby sick, but we can get through this! All our prayers have worked, and I KNOW that my Poppy was with this little baby the whole time making sure he was being taken care of! For now we are going to enjoy our family life and I am going to try not to waste my worries on things that can't be fixed and enjoy the moments we have right now! Love you all!

Biopsy

So the biopsy came back and it showed no abnormal cells, which means no malignancy! YEAH! They said that everything was just wiped out from parvo and we are going to give him some time to build it back up on his own. They said that it actually showed that he was producing ample amounts of cells, they were just mostly new cells and hadn't reached maturity quite yet. We need to see that he can get them out of his marrow and into the his system where they belong! There are some therapies that he may need to do to help him do this, but we are going to give his little body a chance first.

There are a few more tests that they ran on his marrow that take a few weeks to get back, that is one reason why we aren't starting any medicine now to help him. If any of these come back positive then the medicine would cause more harm than good. The doctors said that what they tested him for are really random things that could maybe be causing this to be as bad as it is for him, but more than likely they are going to be negative. So that is good!

We have this huge amount of relief now. He still has to stay pretty isolated because his counts are still really low, so hopefully in the next few weeks he can bring that up on his own and we can start to get some normalcy back to our family life.

Again, we want to thank all of our family members and friends who have been there for us through all of this! We know all the prayers have really helped as well. Thank you guys so much, it means so much to us! And again, we were able to see who truley cares and who we can depend on! Its kind of sad that you have to find out who your true friends are and who you can really depend on by going through something like this. This has been such an emotional rollar coaster for us, and they are telling us that we are headed out of it all now! Let's hope they are finally right! I don't know what else God could possibly throw our way, but after all of this we can handle it.

Answers

Finally some good news! Bryson's cells look healthy and normal. He just doesn't have enough of them, the theory now is that they are suppresed from the parvovirus. Dr. Hanson wants me to call tomorrow to verify with the biopsy (this takes longer than the asperate to get back, and his asperate sample wasn't the best he said) that this is all correct. The biopsy is what will tell us 100% that this is right. Dr. Hanson just went off the asperate...this is all really good news compared to what it could have been. He said that we will probably have to set up a treatment plan involving injections to help boost his system. We will discuss that tomorrow. Anyway, its about time we got some good news!

waiting again...

We just got back from the hospital. Bryson did so well with his bone marrow test. They sedated him and then we stepped out while they did the test. The hardest part for me this time was the IV. I have seen it done so many times, and even done it so many times, but for some reason I lost it today while it was being started on him. I guess he is just a really hard stick, and the fact that he hadn't eaten in forever didn't help his moodiness. He was just so miserable during that, I felt so bad for him. He woke up about an hour after the test and ate really well, so they let us go home. Dr. Hanson said that we will probably know something this afternoon. I am sure that it will be fine. Dr. Hanson was very positive about everything so that really helps. While it was good to see the friendly faces that we grew to be so fond of in the PICU, we hope to never have to go back there, unless its for a friendly visit! The staff back there was so great to us both times! Keep thinking positive thoughts and I will post once we know anything.

Thursday

Thursday morning is when we will be doing Bryson's bone marrow. They told me nothing to eat or drink after midnight, and I said "No way." There is no way this baby can be NPO for ten hours. Its just IV sedation, I would think maybe 4-6 hours, but he's so little, there is no way he can go that long and he wouldn't understand why I wasn't feeding him...this should be interesting. The nurse at the office said we will have all the results on Friday sometime.

Here we go

Dr. Hanson, the hematologist, just called me with Bryson's labs. They did go down, which is not what we wanted to see. The next step is to look at his bone marrow, which someone from his office is going to call me to set that up for sometime this week. We will be back in the PICU for one day for the procedure. Dr. Hanson seems to be pretty optimistic that this isn't going to be any sort of cancer, but probably still parvo-related. He just needs to look at the marrow and see if for sure it is, and then he can better understand what is going on and what we need to do to get over all of this. We shoudl have the results of all of that the next day. That's the news for now, I will let you all know when we will be doing the bone marrow. Keep thinking positive and say lots of prayers!

Waiting

I just got back from the lab to have Bryson's tests drawn. Now we just wait and see! Hopefully they have all gone up, I can't imagine that they wouldn't have, he is acting so much better and looks so much better! They should call me sometime today, but I guess no news is good news! So keep positive thoughts coming our way, I will post when I know what they are.

OOPS...

A few people have asked when Bryson's labs are being done again. Sorry I forgot to include that! They are being done on Monday, hope for the best. We really want to see his numbers go up some more.

And yes, I am aware that I am making a post at 2am. Its feeding time!

A glimpse of where we've been....

Bryson's Story

I thought I would just put it all out there. I know there are many different versions of this story floating around among our friends and families...but here is how it all went...

In December, while I was pregnant Connor got a "cold". A few weeks later a bright red rash appeared on his face and arms. I took him to the doctor and they told us he had fifths disease (parvovirus, and NO not what dogs get!) Fifths disease is not harmful to older children and adults, UNLESS you are pregnant. It is one of those things that if you have it once you are never going to get it again. I figured I had probably had it at one point so it wouldn't be a big deal. It turend out to be a pretty big deal

I had labs drawn that showed that I actively had the virus and the baby was developing severe anemia. We delivered him at 32 weeks so that he could start producing his own blood cells. All was well considering. He spent 3 weeks in the NICU at St. Johns. That was, at the time, one of the hardest times in our lives. Leaving our baby every day at the hospital is something that is indiscribable. Bryson cruised through the NICU and did very well. No complications from parvo while we were there. We thought we were in the clear. We were wrong....

When Bryson was 5 weeks old I noticed that he did funny things with his eyes and lips and tounge. They were pretty brief episodes and I decided to watch them for a while. After a day of staying calm about it I decided this was not right. I called the doctor and she had us go to the ER. The next week was a total blur for us. Bryson was poked and proded everywhere. It turns out that the parvo virus had casued him to become very anemic. He had a blood transfusion and recieved IVIG for five days to help build up antibodies to fight the virus off. He was having little seizures as well. We left the PICU after a 1 week stay with our baby healthy.

Bryson curently is still having problems keeping his blood work levels normal. When we left the hospital his hemoglobin (red blood cell number) was a 11. His last check the count was down to 8.5. We are watching that level and if it dips below 8, he will get another transfusion. He is taking iron every day to help keep it up, but all that seems to do is constipate the hell out of him. The other concerning level now is called his ANC which is his neutrophil count number. Neutrophils are part of the white blood cell group and they are the guys that help fight off infections. A healthy ANC is greater than 1,000. Bryson's highest his whloe life has only been 480. We are now seeing a hematologist/oncologist and at his last visit it was 550, so that was good that it has gone up. For now we are pretty much under house arrest with Bryson because if he were to get even a little cold that could be pretty damaging to him because he doesn't have the cells to fight it off! The plan with that is give him a few more weeks, unitl he is 12 weeks old and hope that it continues to go up. As long as we see it go up on its own that is good. If it goes back down we will look at his bone marrow by doing a biopsy to make sure there is nothing else going on there. Hopefully we don't come to that. That is pretty invasive for him. The thought right now is that all of his counts are down due to the parvovirus but once he hits twelve weeks he should be strong enough to get those counts up on his own hopefully!

That is where we are at today. We have an amazing doctor who has been so helpful through all of this. He is also being followed by a neurologist, hematologist and GI doctor (he has severe reflux). There is not much out there on Parvovirus and we are told that what he has gone through is very rare. The only information that we are really able to find is the info we already know, or info on the dog version...which is totally different. This doesn' t make us feel any better, its actually worse because we just want answers for him!

We want to thank our friends and family who have been there with us through all of this. We really found out who our real friends are, that's for sure! We couldn't have done all we have without your support. Hopefully this is the end of all of this madness for our family and we can start enjoying ourselves again!