The Eisel Family

labs back

noreply@blogger.com (Seanna and Brian) — Mon, 26 Oct 2009 20:57:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Wed, 07 Oct 2009 20:28:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Tue, 08 Sep 2009 20:20:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Mon, 17 Aug 2009 21:17:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Thu, 02 Jul 2009 19:09:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Thu, 02 Jul 2009 18:54:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Fri, 05 Jun 2009 15:31:00 +0000

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!!

noreply@blogger.com (Seanna and Brian) — Tue, 02 Jun 2009 19:33:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Tue, 26 May 2009 19:50:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Mon, 04 May 2009 21:22:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Thu, 16 Apr 2009 19:15:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Tue, 14 Apr 2009 14:05:00 +0000

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?

noreply@blogger.com (Seanna and Brian) — Mon, 30 Mar 2009 15:18:00 +0000

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!

noreply@blogger.com (Seanna and Brian) — Thu, 19 Mar 2009 20:27:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Thu, 19 Mar 2009 20:21:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Mon, 09 Mar 2009 16:33:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Fri, 06 Mar 2009 13:49:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Thu, 05 Mar 2009 15:13:00 +0000

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....

noreply@blogger.com (Seanna and Brian) — Wed, 25 Feb 2009 14:34:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Tue, 17 Feb 2009 19:56:00 +0000

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!

noreply@blogger.com (Seanna and Brian) — Tue, 03 Feb 2009 20:49:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Fri, 23 Jan 2009 16:21:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Tue, 30 Dec 2008 18:55:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Thu, 11 Dec 2008 19:37:00 +0000

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

noreply@blogger.com (Seanna and Brian) — Mon, 08 Dec 2008 13:04:00 +0000

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!