The Eisel Family

Lab time AGAIN

2010-03-28T00:24:00.002-05:00

Well. Things are still going pretty well. Bryson continues to amaze us with how fast he is growing. I can't believe he's already two! What happened to my sweet baby? He is now a toddler! He went potty on the big boy potty for the first time the other day. He is talking lots which is so refreshing to hear. He has no more motor delays and it really seems like his left side has caught up to his right, no more weakness!

We made the trek down to Glennon on Thursday (March 25th) to have his labs drawn. Brian got to experience it this time with me and I think he was pretty impressed with how well Bryson did! He doesn't realize all the times we went to go get them drawn, and I was by myself, how awful it was! All the sticks and screaming, ughh!!! It was horrible back then, it has gotten easier for him the older he has gotten. He's not as hard of a stick anymore (THANK GOD!). Poor little guy, after we registered and checked in and walked into the lab Bryson stood by me and said "No Mom." Just like he was saying "no, thanks. I'm good, I'm gonna pass on this one." He saw the chair that we sit in and realized what was going to happen. NO 2 year old should ever have to recognize a lab chair, EVER. Mine does. Anyway, he did great and it was over real fast. We should have the results in a few weeks. I pray that they are coming up and we can verify finally that this is something that he is outgrowing. He wants to play with other kids so badly. I would love to enroll him in some classes or something so he can be around other kids his age, but we really haven't been able to do that yet. He started in the mom's day out last fall but we had to take him out of it because of his stinky labs. :(

I'll post when we get his results back! Prayers work wonders, so keep them up for Bryson! Thanks for all the support and for reading my poorly kept up blog!

WE ARE STILL HERE!

2010-03-03T08:42:00.003-06:00

I know, I know, I haven't posted ANYTHING in months.

Nothing new really, just very busy! Bryson turned two and is one busy boy. He will be having labs drawn this month so we will see where we stand. He was pretty sick a few weeks ago, it was awful. He had the stomach virus going around and it took him over a week to get better. Just when you think things are better you get a sharp reminder that its not. What would take a 'healthy' child 2 days to get over took mine over a week. It was horrible!! Since that's been over we are back to "normal". Thank goodness!

Connor is doing great, second grade is flying by! Before we know it, it will be April and First Communion time. WOW.

I promise, I will keep up with my blog again. No excuses! Thanks to those who continue to check in!

labs back

2009-10-26T15:57:00.004-05:00

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

2009-10-07T15:28:00.002-05:00

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

2009-09-08T15:20:00.002-05:00

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

2009-08-17T16:17:00.002-05:00

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

2009-07-02T14:09:00.010-05:00

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

2009-07-02T13:54:00.002-05:00

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

2009-06-05T10:31:00.002-05:00

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!

No news is good news I hope!!

2009-06-02T14:33:00.003-05:00

We had labs yesterday. Bryson did great. I think its way harder on me than on him. He now gets so so angry and fights everything. Plus, I have to hold him down in the chair and he just looks at me and screams. He doesn't understand, poor little guy. Haven't really heard anything yet and I am guessing that no news is good news! Brian and I were talking and really he has been doing so amazing that even if things are still off or low we aren't going to worry to much.

I will post as soon as I hear something!

Thanks!

Back to Reality

2009-05-26T14:50:00.004-05:00

Sooooo we went back to OT today. I walked in there thinking we would be DONE with all of this. It seems that the therapist has a different agenda. She asked me how he's been doing, I told her I thought he was doing great he really seems to be improving to me. As of today we were going just once a month. After this session she upped us to twice a month....grrrr. She noticed a lot of right sided dominance, I guess I have been choosing to not see it but as he was doing things and she was pointing them out I guess that is how he's been . Its just the norm for him so I don't look at it as different. Oh well, I guess we will just keep going with it :)

She asked when we were seeing the neurologist again, and I said he left it up to us. If we felt like he needed to see him again at 18 months then he would probably order scans again. She said that he comes in and has meetings with the therapists about his patients and Bryson is up for a meeting in a month or two. She said let's see how he's doing next time, but right now I would suggest he continues to follow him. GREAT.

Maybe in a month it will all be gone. Maybe in a month he will be talking. Maybe in a month he will be up to par with other kids. Maybe in a month we will have his labs back and all this will be over. Its been a loooong year, and its starting to wear on me again. I think we have been living a relatively "normal" life with him the last few months. He hasn't been sick, he hasn't had blood work and we have stayed out of doctor's offices. I guess going without all of that pushed the reality of what's really been going on with his little body to the back of my mind. Its time to face it all again next week. He will have his labs drawn next week and hopefully we have the results back by the end of the week. I really think they will be good because he's done so well since I've taken him off the antibiotics. I guess I'm just in a funk right now. I know we are lucky...I've said it over and over again how lucky we are. We get to tuck our little man in his bed every night and there are parents out there who aren't able to do that, but I am really hoping that we can finally be done with everything. I am dreading his lab work. I know he's going to scream and throw a fit and to be honest, I don't blame him. I didn't have a hard time with it all when he was little, maybe its because of my job and its what I'm used to. But the older he gets the worse it is. He understands more now and it just sucks. Let's hope this is it for a loooonnnggggg time for him!!!

Thanks for letting me vent. I don't even know if people still read this thing. I really do it to keep up with his history and its an outlet for me to vent to. Sorry to be such a downer!!

Here's to good labs next week!!!! Fingers and toes crossed please!!!

OT

2009-05-04T16:22:00.002-05:00

We had our OT eval last week. It went pretty good. She said she can see the difference between his left and right. More noticeable when he is eating. He doesn't use his left hand to eat and if he does, he passes whatever he has in his left hand over to his right and then eats. It seems like more work to do it this way, but its what he does! Oh well. She suggested splinting his right hand so that he is forced to use his left and I wasn't to thrilled with that idea. I am afraid if we do that then he won't use his right hand at all anymore either! That seems silly to me. Plus, its so subtle, its not like he doesn't use it at all! Anyway, we are going to be working on it for a bit.

In other news...I have made the "nursing judgement" decision to take Bryson off his antibiotics. He was getting a dose everyday to help protect him since he can't do it himself. I figure its May now, so lets see what happens! Hopefully I don't end up kicking myself like I did a few months ago when I did this and ended up with one sick baby! I think this time of year is pretty calm so we will see how he does!! The Immunologist said if I felt like it was a good time to try him off it I could do it, but he would like to wait until after we do his labs in June. What's a few weeks?? Keep your fingers and toes crossed that it goes well for him. I just have a feeling that his levels have gone up, he has done so well!!

Connor just turned 7 yesterday. I can't believe it!!! My baby is 7!! He is such a sweet little boy, so sensitive and he just adores his brother. He just wants to protect him all the time. Its precious. I am so proud of him. He is growing up so fast, now I know what it means when people say it goes by "in the blink of an eye." This is so very true. I love it when I look in the rear view mirror of my car and see the two of them holding hands. Usually Bryson is sleeping and Connor is just looking out the window holding his brothers hand. Its so sweet. Its moments like that that are the best part of being a mom.

Doc apointment and ID awareness month

2009-04-16T14:15:00.002-05:00

Bryson had a check up today. We didn't do any vaccinations. They don't want him to have anything live with his immune system stuff. Otherwise, it went well. Nothing exciting. We are going to keep up with therapy and maybe over the next few months start working with a speech therapist if he doesn't start talking soon. Our ped wasn't to worried about it, but wants to make sure by 16 months he's talking more.

We talked about how pale Mr. Bryson is. She said that whenever we wanted to grab counts on him is fine with her, I think I will wait a bit. Why stick him if he's acting ok? And his cheeks do have some pink color to them so that's good! Bryson has these veins that are really noticeable around his eyes and its pretty dark around his eyes. She said that this is pretty common in these kiddos to have that appearance. It doesn't bother me in the least....he could have purple hair and green skin as long as he is healthy I DON'T CARE. I just worry because when he starts to look pale like this his counts tend to be dropping. I will see how he does over the next week or so. I know if she thought he needed it she would have sent us over to the lab, but she didn't so I'm not to worried about it. I trust her 110%!! Its wonderful to have a doctor that you feel this comfortable around! I am bummed b/c she is going to be out for a few months having a baby ( I am so excited for her, but sad for us!) What I love is that she said if we need anything while she's out to call her. How awesome is that?

We go back to Immunology in June. That's about it for now!

Thanks for all the amazing prayers!

Don't forget that April is PID (Primary Immune Deficiency) awareness month! I will be doing a fund raiser once they send me the packet info. We continue to count our blessings each day. Bryson is doing amazing. They prepared us for the worst during the winter and he did so well!We haven't had to do IVIg since last spring. That's amazing, especially with how low his counts are! There are people out there that have to get it every week. I'll post with more info once I get my packet!

Therapy update

2009-04-14T09:05:00.003-05:00

We had an amazing Easter. Bryson and Connor were so much fun this year. I promise to post pics as soon as I get a chance.

Therapy was great last week. Bryson was walking all over for her! I thought Bryson was doing so well, I hadn't noticed the leg being as stiff as it was when he first started walking. I thought for sure she would be finished with us now! Not so much. She actually wants him to be evaluated now by an Occupational Therapist. Bummer. I thought we would be done with therapy, not so much.

I don't see OT being that big of a deal. Its really just to fine to tune his fine motor skills. We have spent so much time working with him on his gross motor, the fine motor kind of fell behind a bit. He may just need a little push to get things going!

Lab wise, we won't be checking counts until June. Is it driving me crazy not knowing? OF COURSE! We have gone from twice a week counts, to once a week counts to once a month and now until June! AHHHH! I am thinking that this is a good sign to have them be spaced out now. I know the Immunologist wants to get his immune system closer to being mature so we can get a better idea of what's going on in there. Then we will come up with a plan of action, if we need one. Hopefully they just start to all come up on their own! There really is no sense in checking them every week if there is no change and he is doing well.

Thanks for the prayers! We will post some Easter pics later.

One quick question...why the heck is it 40 degrees outside in April? SERIOUSLY.

Why I blog?

2009-03-30T10:18:00.002-05:00

As many of you know, I started this blog for everyone to keep up with what was going on with Bryson. Through doing this, I have found that it is a great way for me to release some of my anxiety and stress over all the stuff that's going on. I know it seems crazy to put all that has happened to us out there for anyone to read, but I have found that I have made a few new friends by doing this. I have connected with a few other mom's who are going through not the exact same thing, but similar things. This has helped me so very much. I don't feel so alone in all of this.

It has also been a way for me to keep track of everything that has happened. This little man has been through more stuff than I could ever fit in his baby book! It really has been a good reference for me to come back and look at.

Things are still pretty quiet for Mr. Bryson now, thankfully. We are blessed.

Bryson is walking!! I will try to post video later. Its so cute. I have noticed that his left leg is a bit stiffer than his right. He swings it out and around instead of straight out. He has a hard time with it. I was kind of bummed to see this because I thought we were done with the whole "left sided weakness" thing. Weakness or not, he is walking and that is the important thing! He cracks me up, when we stand him up so he can walk he just gets the biggest kick out of himself. He thinks he is the best darn thing since sliced bread! We go to therapy tomorrow, so I will see what Miriam has to say about it all. Hopefully, the more he uses it the better it will get just like the other stuff he had to overcome.

I know I always end my posts with this...but I mean it. Thanks so much for all the prayers!! He has been listening.

Bryson's birthday pics...better late than never!

2009-03-19T15:27:00.003-05:00

Its been a long time since I've posted any pics. These are from Bryson's first birthday, back in January. OOPS. He had an elmo cake, that turned out amazing. We just had a few family members over for pizza and cake to celebrate. Bryson loved every minute of it!!!

My litle messy man enjoying his first birthday cake. You get smarter after the first child. Note that he is down to the diaper. The reason should be pretty clear.....

Back to normal

2009-03-19T15:21:00.002-05:00

Things are back to the norm around here. Bryson has been doing great since he was sick a few weeks ago. No more temps or cough. YEAH!! We will be doing labs again soon, but I am pretty optimistic that they will be better. I know his CBC last time was great so that is promising. I am really curious to see what is IgA IgG and IgM levels are as well as his T-cell function and B-cell function. Time will tell!

Connor is doing great. He is on spring break right now and loving every minute of it. I am really enjoying this break with him. He is such a great big brother to Bryson, its so sweet to watch them together. It has been awesome outside so we have been doing a lot of playing outside. Bryson still isn't walking, but he is really getting close. We go back to therapy in a few weeks so we will see how that all goes!

Otherwise, nothing new and exciting to report from our end! I hope everyone is doing well and enjoying this awesome taste of spring we have right now!

Much better

2009-03-09T11:33:00.002-05:00

Bryson's chest x-ray was good. No pneumonia! Yeah. He has had a great weekend, no temps. He felt a little warm a few times but nothing to bad. He is doing well this morning so I think we are in the clear. No trips to Glennon for us!

Little better

2009-03-06T07:49:00.003-06:00

Bryson had a good night last night. He was up one time with his coughing. His fever was up when he went down (101 with Tylenol in him) but it didn't seem to bother him to much last night. I think he just hit the point of exhaustion, as did I.

Yesterday our pediatrician said to call the Immunologist down at Glennon. I finally talked to them and I really liked the doctor I spoke with. He went over EVERYTHING with me. He said he was comfortable with Bryson being on a low dose antibiotic for now since his ANC was normal. (Yeah!!) He said if by Monday he is still spiking temps then they need to see him. I am hoping that by then he is better. He is having a pretty good morning so far! No temp. It usually comes on late morning and then comes back in the evening. Its so weird. Our pediatrician also suggested getting a chest x-ray to make sure he doesn't have pneumonia or bronchitis or anything else going on. We are going to do that this morning.

That's it for now. I really can't complain. They had us thinking that this is how he would be all winter long, and if this is the only issue this winter then we are pretty lucky.

One sick baby

2009-03-05T09:13:00.003-06:00

Poor Bryson. On Sunday he started running a temp and sounding really gunky in his chest. His temps have gotten as high as 104's. We came pretty close a few times to going into the ER but we made it through without that trip! We went to the doctor on Tuesday and she drew labs on him. I was shocked with how awesome his labs were! His ANC was 3000!! His H/H was 12/36 and his WBC was only 9. His monocytes were elevated which means he defiantly has a viral infection so we are just hanging out and waiting for this to go away.

Yesterday was a good day for him, his fever was gone most of the day and he was eating and playing and almost back to his old self. Then night came. He was up coughing and sneezing and his fever was back (101-102). He woke up this morning doing great and then became really fussy and just wanted me to hold him all morning. He felt warm...I didn't check it to see what it actually is, at this point I can just tell. The pediatrician is supposed to call and check on him today. When we were in on Tuesday she said she would give him until Thursday. I don't know what she meant by that, but its Thursday and he still keeps spiking temps, so now what?

I feel so bad for the little guy. He has stretches where he feels so good and then its like clock work....every night it gets bad again. I know with his immune system function not being the best that he will probably take longer to get rid of this stuff so I guess we will just wait and see! I should be hearing from the doctor soon so we'll see what she says!

Poor little man!! :(

One year ago....

2009-02-25T08:34:00.003-06:00

One year ago today, our lives were turned upside down. I can't believe how far we have come over the last year. Bryson was admitted to the PICU a year ago and thankfully, we haven't had to go back except for his bone marrow aspirations. If you don't know the story, you can read previous posts. I don't feel like typing the whole thing out.

Bryson is the strongest most amazing little man I have ever met. He has been through more in the past year than most people go through in a life time. AMAZING. I look back, and still have no idea how Brian and I have made it through the last year without losing it. Trust me, there were many times that I wanted to, and then I would look at Bryson and see him laughing or smiling and think if he can do it then I sure as heck can.

Thanks so much to all of our friends and family for the support with everything. I know its not all over yet, but we seem to be headed uphill now! Please continue to keep our little guy in your prayers they have really worked wonders!

We love you Bryson and are so proud of you. We can't wait to see what amazing things you will accomplish, you can do anything you want to do.

Still quiet

2009-02-17T13:56:00.003-06:00

I haven't posted in a few weeks. We really don't have anything new going on at our house which is a miracle in itself! Bryson is getting pretty close to walking which is so fun to see. Somehow this winter we have all remained very healthy. Knock on wood!

Connor is doing really well in school and hasn't complained about the noise at all. Yeah!

My friend Michelle's baby is doing amazing. She is still in St. Louis with her mom and grandparents. They are hoping in two weeks to be able to return to Virginia. Thanks for all the prayers for their family! They worked!

That's all for now!

Quiet at our house, for once!

2009-02-03T14:49:00.004-06:00

Bryson has been doing great. Last week he started have blood in his stool, which scared me to death. We did cultures on it and every thing came back ok. They think he just had a fissure or something. So that is great news. His therapy has been going really well, we actually don't have to go back there until he starts walking. He has splints in his shoes to help him with his feet, but I don't see walking happening for a few more months. We aren't doing anything with Bryson as far as labs go until this spring, unless we hit a bump. So far so good this winter so let's keep it that way!

Connor has been having ringing in his ears and has been seeing an ENT for that. They want to do an MRI and blood work and I told them not yet. If he continues to complain about it over the next few weeks we will proceed with all of that but its not on a daily basis so I don't see the need to put him through that.

I am asking all who read this to pray for our good friends, Randy and Michelle. They were in town visiting from Virginia when their baby girl (Laine) who is one month old developed a cough. The next thing we knew she was on a ventilator and being air lifted to Cardinal Glennon. She has a heart defect and they did surgery yesterday. They have had some bumps since then and had to go back in last night to evacuate some extra blood. Laine has her mothers strength and will pull through all of this. I have been so amazed by the power of prayer this last year and am asking everyone to find a minute in their day today to say a prayer for Laine and her family. I have added the link to her carepage on my sidebar.

Quick Update

2009-01-23T10:21:00.002-06:00

I am doing this from our temporary source of Internet. So I need to make this quick. So sorry for not updating sooner, our computer isn't working very well.

We redrew Bryson's labs last week. His immunoglobulins were all still pretty low. The silly nurse told me that his IgM was normal and when I got my copy of the labs I called her out on it and she apologized (again). We have decided to not do the IVIg, Bryson had such a rough time with it last time he got it and he is doing so well right now I hate to mess that up. Yes, his labs are still low but the did go up a little bit on their own, which is promising. The doctor still doesn't know what to make of the test with his protein being off which bothers me to no end. So basically all the testing we just did we still don't have a real answer. We know his immunoglobulins are low, we know his T-cell and B-cell function are decreased and we know his CD-40 gene is normal. So confusing. This doctor wants to redo labs in June so I guess we will wait until then unless we have issues! We saw our pediatrician yesterday and she said she thinks that he has two different issues. 1-parvo 2-an immune deficiency issue. She said that if we don't get answers with these next tests we may need to look to someone out of state that could give us answers. I guess time will tell with him. Our ped said to remember that kids with immune system issues don't generally become symptomatic until they are at around two years old. GREAT. Hopefully the rest of this year is one we can enjoy and get out and start doing more as a family. Bryson's ANC count was pretty good, it was 1,000. They just want that one up above 500 so that was good news! His anemia seems to have been resolved as well! YEAH! Baby steps!

Bryson turned one yesterday. I can't believe the year that we have had as a family. Its been pretty trying and rough. But we made it! I know I have said this before, but you really do find out who you can count on when going through stuff like this. Its pretty amazing. Thanks so much for all the prayers and support! Please continue to keep our little man in your prayers, they really seem to be working!

I promise to update with pics later and I know I still have Christmas theme on my page, I will get that changed as soon as I get a chance!

Confusing News

2008-12-30T12:55:00.002-06:00

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

2008-12-11T13:37:00.002-06:00

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

2008-12-08T07:04:00.002-06:00

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!

2008-12-04T08:19:00.002-06:00

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!

2008-11-26T14:45:00.004-06:00

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

2008-11-20T08:07:00.003-06:00

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

2008-11-17T13:58:00.011-06:00

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...

2008-11-10T15:31:00.002-06:00

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!

2008-11-06T15:34:00.002-06:00

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?

2008-11-05T08:37:00.003-06:00

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!

2008-10-31T12:03:00.002-05:00

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...

2008-10-30T11:49:00.003-05:00

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

2008-10-24T08:23:00.002-05:00

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

2008-10-20T14:39:00.002-05:00

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!

2008-10-13T11:13:00.004-05:00

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

2008-10-09T15:23:00.003-05:00

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

2008-10-05T10:23:00.008-05:00

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

2008-09-19T07:41:00.003-05:00

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!

2008-09-08T12:44:00.002-05:00

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

2008-08-25T06:11:00.002-05:00

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

2008-08-14T12:08:00.003-05:00

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!

2008-08-05T14:47:00.003-05:00

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

2008-07-30T07:36:00.002-05:00

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!

2008-07-10T15:09:00.003-05:00

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!

2008-07-02T15:04:00.007-05:00

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

2008-06-30T12:30:00.004-05:00

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....

2008-06-18T08:13:00.002-05:00

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

2008-05-29T12:58:00.002-05:00

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

2008-05-25T13:07:00.004-05:00

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!

2008-05-12T22:40:00.006-05:00

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...

2008-05-06T16:38:00.003-05:00

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

2008-05-01T14:54:00.002-05:00

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

2008-04-29T12:36:00.003-05:00

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

2008-04-23T15:52:00.005-05:00

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

2008-04-21T16:54:00.002-05:00

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 (???)

2008-04-18T05:14:00.005-05:00

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

2008-04-13T12:02:00.003-05:00

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

2008-04-10T16:30:00.002-05:00

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...

2008-04-10T13:24:00.003-05:00

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

2008-04-08T11:59:00.002-05:00

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

2008-04-07T13:02:00.002-05:00

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

2008-04-07T11:16:00.002-05:00

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...

2008-04-04T02:07:00.000-05:00

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....

2008-04-03T11:04:00.001-05:00

Bryson's Story

2008-04-01T14:29:00.000-05:00

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!