Anonymous

So as you can see, I have re-designed my blog. While cleaning up my blog, I noticed this lovely little comment.

Normally, I wouldn't address this kind of thing but tonight, it unnerved me.

Dear Mr./Mrs. Anonymous,

(1) Use proper English.

(2) ANY day you would like to put your BIG kid panties on and come out from hiding under the guise of anonymity, that would be great. I mean seriously, what a fabulous way to sling mud... you lack courage and in reality, you're the pathetic one.

(3) You are MORE than welcome to accompany me to any one of the numerous doctor appointments we have each month... you can hold either or both of my children down while they have 6+ vials of blood drawn with a vein that collapses necessitating yet another poke with a needle... you can deal with their great amounts of anxiety over the sight of a mere scale in a doctor office because they know that means they are about to get poked and prodded... seriously, any day you want to walk in my shoes, I am more than happy to take them off so you can fill them.

(4) You are the reason anonymous commenting is no longer allowed on my blog.

(5) You are no longer welcome here... do you see that X in the upper right corner of your screen, click it now.

Sincerely,
Laura

one more kiss!

I need to start blogging on a more consistent basis... not for you (sorry, just being honest) but for me. I initially wanted this blog to be a place for me to remember those moments... the ones that I want to remember for forever. It's turned into more of a place for me to document my children's health issues (which has come in handy more times than not) and from time-to-time, I get to document about those moments. My hope is to start blogging about anything and everything - whether it's about Brice's first day in Pre-K3 (coming SO soon!! September 6th to be exact!), Pierce CONSTANTLY wanting to "pee-pee", a picture of my boy's artistic renderings... on my walls, their medical issues or just my thoughts - I need to challenge myself to my blogging at least three times a week - hold me to it, people, hold me to it!

Today is my mom's birthday! We are celebrating with dinner and a cake here at our home this evening. Both the boys called her this morning to wish her a "Happy Birthday" but she didn't answer! So what did this momma do... pulled out the (cell-phone) camera of course and posted videos to Facebook (seriously, THANK YOU technology!).

Aren't they cute?

And my latest update on the boys... it looks like we're heading in the direction of IVIG therapy for both of them. Pierce has been living on antibiotics for weeks now (he did 12 days of Omnicef and is taking 3 weeks of Augmentin). Brice is about to start antibiotics as well for a sinus infection.

This is what our daily meds list looks like (minus whatever antibiotic Brice is about to start...)

They are both having blood work on Monday, August 2, to check their titer levels (post Pneumovax23) and to check their memory B cell functioning. The latter test is experimental but it can indicate if they have difficulty making cells necessary to recognize and fight off a microbe on repeat exposure. If Pierce's titers come back low, that will be enough to justify (to insurance - they need certain labs to approve IVIG since it is extremely costly) starting his IVIG course for 18-24 months. If Brice's titers come back low OR within an acceptable range but his memory B cell function is low, he will begin IVIG as well.

At our hospital, IVIG therapy is administered once a month, on Wednesdays only. It is a short stay admission to the hospital (typically about a half day so long as the infusion is uneventful). An IV will be placed and the infusion typically takes a couple of hours. Every 6 months, they will have blood work to look at their levels - IgG but specifically IgM and IgA. If at any point during treatment, their IgM or IgA level starts to decline they will be given the definitive diagnosis of CVID (Common Variable ImmunoDeficiency) or hypogammaglobulinemia. If that doesn't happen, once the course of IVIG is completed, they will have blood work 6 months after to check their levels. If everything looks good, they will still be followed because they are technically not out of the woods. At any point, their levels could drop off which would mean true CVID (as opposed to transient of childhood). If they do have CVID, they will get IVIG for the balance of their lives... that statement is a bit daunting.

Deep down inside, I strongly feel as though they will both be candidates for IVIG Therapy. I am thankful to know that we will most likely have an answer in about 3 weeks (versus in September!). I remain hopeful that if they do go in this direction, that it's just transient and not true CVID. Only time will tell... and for some reason, I just can't buy into the quote of "this too shall pass" because, what if it doesn't.

It's not fair for them. I feel like my body failed them. I know in reality that I haven't failed them. But if they have this... at what point during their development did something go wrong? I've felt like this for quite some time with Pierce's mitochondrial diagnosis. And while he is on the mild end of the spectrum, we have no assurity that it will always be like this. It can change at any moment... and that scares me. I feel like I am constantly questioning every off thing he does - Why is his appetite suppressed? Is he falling more than usual for a toddler? For himself? Why is he sleeping more than usual? Are any of these symptomatic of regression? And  now, the thought of him having a compromised immune system on top of it... that just sucks. It's bad enough that he will be on a list of medicines for the rest of his life, but to think he may need IVIG forever too... I despise that too. But then I look at them... and I see their happy, smiling faces. I see them playing with one another. I see Pierce becoming more of a toddler daily and Brice becoming less of one. I see so much love and happiness. And that makes every single moment I worry and stress so completely worth it. I would be lying if I said I wished things, medically speaking, weren't different. It's a lot to take in but I still get to fulfill requests of "one more kiss " (actually 8 more kisses) and "one BIG kiss"... I still get to kiss them good night, every night And those moments are some of the moments I want to remember forever.

Updates

Sorry for not updating lately... to be honest, I just haven't felt like it. I feel like every time I post something it's like throwing a rock onto the not-so-good news side of my proverbial life scale... but I've come to accept that it is just the way it is right now. I also realized that I need to blog before I forget. My past posts have come in handy in terms of remembering 6+ months ago when I've needed to update a new doctor.

As much as the Type A in me wants to be all organized, this post will be somewhat all over the place...

June 13 --- Pierce's first appointment with Dr. Levine at Children's Hospital (New Orleans). I was very impressed and equally as happy to have him on our team of doctors. He seems extremely knowledgeable. I really liked when he said if he feels strongly that Pierce's health is going in X direction, he will let us know so that we can make an informed decision in a non-stressful environment (vs landing in the ER, being admitted and having to make a big decision for his health). Pierce's lungs looked good - no evidence of any lung disease. He gave us a prescription for Xopenex to use prn for wheezing episodes/night-time coughing. We follow-up with him in September - aka "lung season" - and if we ever feel as though a visit is warranted, his doors are open. He also wanted Pierce to undergo another modified barium swallow study due to choking and aspirating episodes. We scheduled a GI appointment with Dr. Keith at Children's for late July. {{After I typed this, I felt as though I've previously blogged about this but I can't remember}}


June 24 --- Pierce's 18 month well-visit; he was finally put on antibiotics - 12 days of Omnicef. His sinus infection started to clear up and magically his choking episodes started going away --- my mommy brain is telling me it's not truly a mechanical issue. I think it's either (a) his adenoids are/were swollen or (b) when he's sick he becomes weak (normal for anyone) but maybe it's affecting his suck/swallow/breathe function. I plan on discussing my theories with Dr. Keith.

June 28 --- Pierce received the Pneumovax23 Valent vaccine; Brice saw the same immunologist. We discussed his history and his previous immunology visit in September 2009. Brice had bloodwork to look at his immunoglobulin levels and titers. Brice also received the Pneumovax23 Valent vaccine.

July 5-8 --- Pierce started with fever the day after he completed a 12-day course of Omnicef

July 11 --- Pierce started with fever (again)

July 13 --- Pierce's fever climbed to over 104 with Motrin and Tylenol rotation getting it into the 103s. His heart rate was in the 140-150s and his respiratory rate was in the low 60s. We spoke with the pediatrician on call and she suggested that we take him into the ER given his medical history of mito diseaseand possible hypogammaglobulinemia. So off to Children's we went... 4 hours later + 1 chest x-ray + blood cultures = possibly something bacterial starting to occur but most likely viral

July 15 --- (today) Pierce STILL has fever. I spoke with his immunologist and she suggested that we go into the pedi to rule out strep and ear infections. Either way, she wants him on a 3 week course of antibiotics. She mentioned that it looks like he will ultimately end up needing IVIG therapy. We really won't know more until early September. Both the boys have repeat bloodwork to check their titers on August 23. It takes approximately 2 weeks to receive those results back. And speaking of titers, I received Brice's pneumococcal titers back today... {drum roll please}

They are non-existent --- seriously, what the heck?! His IgG3 level was low and his IGE level was high - allergy testing will most probably be tacked onto his August 23 follow-up.

So it appears as though both of my children do not respond to protein-conjugated vaccines. Fingers crossed that their immune systems will mount a lovely response to Pneumovax23. Come on August 23... and more importantly, come on 2 weeks post August 23.

I really just want answers. If one or both need IVIG therapy, I just want to get to that point. I just want something concrete... something that doesn't involve such lengthy wait times.

That's all for now because Pierce has a doctor appointment in about an hour...