Wednesday, April 27, 2011

Houston Day One & Two

We arrived Sunday evening to find several of our friends, as usual, at the Ronald McDonald House (RMH), happy to see us.  I was reminded, again, how blessed we are to have this home away from home.  We settled in, got dinner, then hit the hay knowing we had a very early morning on Monday.

Monday morning all three kids had hearing tests and a visit with the ENT.  Chance has been seeing Dr. R since last year when we, greatly feared....that he was losing his hearing.  Dr. R was our hero when he found the easiest of answers....something far too rare around here....Chance's ears were just full of wax!!  While removal was not fun, Chance was astounded at how well he could hear when it was all done, and we realized he'd likely not been hearing well for a while.  Needless to say, we like Dr. R...a lot.  He is easy to like though....he's got a great bedside manner, plays in a band on the weekends, so he and Chance have plenty to talk about, and is just generally a pretty cool dude.  When we saw him in November, he suggested that the girls really should be followed too, so we made appointments for them then, not realizing there would actually be a few things to talk about, ENT related, by the time we saw him.

All three passed their hearing tests with flying colors.  As I expected.  Proving they really just are not listening to me...LOL.  Chance's visit was pretty boring.....a bit more wax to remove and we were done!!  Miss Abby has had the sinus infections since we saw him last, so we talked a bit about that, and basically he told Abby she has to do the nasal flushes, like it or not.  We will see him again in 4 months, at which time hopefully she will tolerate the flushes and have no more issues, and decide if more needs to be done.  Overall though, he really does think we have cleared the infection and won't likely need to worry about it again.  Madison has been, since last August, having episodic swelling of just the left side of her face.  When it first happened, she additionally had partial paralysis of that side, and no one was quite sure what to make of it.  The preceeding episodes have not included the paralysis thankfully.  When the paralysis was involved, the thought that it might be an issue with the saliva gland did not even enter my could something like that cause paralysis??!!  But as it happened again and again, and that aspect was not included, the thought had occurred to me.  Finally, this last week, our ped wondered about it also and thought we should consider some imaging to see.  Whatever it is, it is not constant, but it happens pretty regularly.  Dr. R agreed that we should get an MRI and try to figure this out.  It turns out that there is a nerve that runs through the salivary gland, so it CAN cause paralysis sometimes, so maybe this is what we are dealing with after all.  There is no rush, and we'll get the MRI done in August, and see where that takes us.  Otherwise, from the ENT perspective of things, all three are doing well.  My kind of appointment!!

After the appointments and a couple of errands, we returned to the RMH to await a couple more of our friends due to arrive for a stay.  Madison could not have been more thrilled to see "her love" Celeste, and Abby about burst when she saw her friend, Harley arrive!!  We were further entertained and loved on when our besties, the Andrew's (well the 2 female ones) came for a visit and we went and ate pie.  Madison was up and down all day, and looked pretty bad by evening, and her g-tube site was NOT happy by the time bedtime rolled around.  We were seriously muddling through, but hanging in there.

Today we had appointments for all three with their mito doctor, and Madison saw the immunologist.  In general, it was an update appointment for Chance and Abby, and while both have things going on, all is being handled well, so there wasn't all that much to talk about with them.  I had given Dr. K the heads up, so she knew today was really about Madison.  In the end, like me, she feels most everything we are dealing with right now is related to her constant illness, and that we need to try and find some way to help her.  While this was good to hear, in that she is seeing what I am, we still don't know what it is we need to do yet, but all seem to be getting on the same page now at least.  In the end, she was glad we were seeing immunology today and is hoping we'll get some answers there.

I love our immunologist, Dr. P....she is a hoot and so very good with the kids.  Madison had been dragging all morning...good in that the doctors needed to see her so puny....but by this appointment I was starting to get worried about her.  She perked up a little, just because Dr. P was loving on her.  I knew going in we wouldn't get any answers today, although I'll admit I still wanted some.  Dr. P did find that Madison's spleen is still enlarged, something that happens when you have mono, but something that usually goes down within a month or so.  We are almost 2 months out from the mono diagnosis, so we don't like seeing that.  She also noted how swollen Madison is right now.....she has gained 10 pounds in less than 2 weeks and just looks so puffy.  While neither of these things tells us much, we do have a plan for now, and I need to find some peace in that.  Tomorrow or Thursday we will get a whole slew of labs done on Madison.  Finding a vein may be a challenge, and my heart hurts having to stick her yet again so soon, but we know our favorite phlebotomist, Monica will make it happen, and love on our girl all the way through.  Then we wait.  It will take about 2 weeks to get the results back, and either it will clearly show us whats going on, or we will be back at square one and I am not sure where we go from there.  While we wait, we are to continue treating the g-tube infection as we have been, and pray it starts to get better.  Between you and I, I suspect we will need to find a way to get into our GI next week and see if he has any other ideas to throw at it.

Madi did perk up a little this afternoon, and spent it low key hanging with her friend.  Abby and Harley hung out and had a ball together, and Chance was creating something out of bamboo he found.  All three had a nice afternoon and evening and are exhausted, snug in their beds this evening, sleeping hard.  I was able to meet up with a new possible mito mom  I have been talking with for the last couple of months this afternoon, and we were so priveleged to get to meet her daughter too!!  This child is just too adorable, and her mom is pretty awesome.  I wish we would have had more time to visit, but was so glad we were able to meet face to face and have even a little bit of time.  Loved meeting you and K, Kyla!!!

Tomorrow we see cardiology with Madison, then pulmonology/sleep doctor with all three in the afternoon.  I am SURE the cardiology appointment will be uneventful, but they do make me so very nervous, and with this swelling she is doing, I'll admit I am even a little more than usual.  I hope to get cardiology on board with the need to figure out the infections also....just cannot have too many of her specialists pushing for some answers.

Thanks for the thoughts and prayers!!!!

Sunday, April 24, 2011

As Planned

Happy Easter to all our friends & family!! Hope you have a wonderful, joyous day today!!

Madison was discharged last night, better but still not out of the woods quite yet.

We came home, got kids to bed, and I worked feverishly to finish up the paperwork I need for the week. This morning is all about packing and getting ready to head out early afternoon for Houston.

I know this sounds crazy, but we have a "lighter" week with 14 appointments between the three kids, with several important ones for Madison this time that we need some prayers for. Will update from Houston!!

Saturday, April 23, 2011


Just a quick note to share that Madison is inpatient right now getting IV antibiotics and fluids to try to stabilize her so we can make our planned trek to Houston this Sunday.

After more than a week of throwing everything we could think of at a nasty g-tube site infection to no avail, and watching her autonomic issues go haywire while her body tries to deal with the infection, we finally gave in and were direct admitted this afternoon.  We should have the g-tube site culture results by tomorrow morning and will know better then which antibiotic is most likely going to work, and are hoping the IV fluids will do their magic and get her autonomic stuff back in check (as much as they ever are).  The “plan” is to try and discharge tomorrow afternoon, with Madison hopefully more stable, so we can then hit the road Sunday midday for Houston for a week full of appointments.  NOT the ideal way to be doing this, but the best we can do right now.  Of course, plans change, and we will have faith that whatever is supposed to happen, will.

It’s been a complicated, frustrating, difficult week with more than a few screw ups, but tonight I am deeply grateful for:
An amazing pediatrician
Some lessons learned
Our favorite phlebotomist who helped rescue us yesterday (even if it was just giving me the courage to stand up for what we know about getting blood from Madison)
The ICU nurse who came to the regular floor just for her, and was able to get Madison’s IV placed today with few options to work with
The beautiful, incredibly comfortable hospital we are visiting this time (first time inpatient at Children’s Legacy, and WOW)
My hubby who is relieving me for the night so I can keep working on getting ready for Houston
And the thoughts and prayers of our family and friends!!

Love & Hugs

Tuesday, April 12, 2011

Yes Dear, It Does Suck

While there was a time when I believed that it was very hard to raise an emotionally intact child with a chronic, degenerative disease…..and still do…..I am coming to the realization that it has never been harder than it is right now, when they are all teenagers.  So many things come into play….hormones, a higher level of understanding and recognition, thoughts of life AFTER being a kid living with their parents at home, AKA “what I want to be & do when I grow up”, and the list goes on. 

To further complicate matters, there is the ever-present DIFFERENT ways that all three deal with things.  It’s ALWAYS been there and it’s something I have pondered on more than one occasion….just how amazing it is that three children, all raised in the same home, with the same rules and parental involvement, with the same level of comfort, can somehow approach life so very differently.  It certainly goes to the whole “nature vs nurture” question, and proves, on some level, that our nature is just there and only partially influenced by the nurturing aspect.

That is NOT to diminish the effects of nurturing, don’t get me wrong, just shows that even nurtured the same, different people react differently to their situations.

In this house, I somehow have children that cover the entire range of possible reactions to the exceptional life we have been given.  And I mean, I have one on one extreme, one on the other extreme, and one who would likely fall somewhere right in the middle, at least most of the time.  The reality is it changes from time to time, or one moves into another’s position for a short time, but mostly, they do their own thing.  Mostly they make their mom seriously stay on her toes!!!

Madison is my extremely (almost abnormally) stoic child.  She tolerates it all, doesn’t stress about what’s going on (at least not outwardly and swears not inwardly either), responds to bad news with a total lack of surprise (I am Madi, what do we expect), and she has ALWAYS been like this, even as a small child.  We could dig for a vein, and poke her multiple times to place an IV and get little more than an occasional ouch.  In some ways, she rides this ride with absolute grace, and we could all hope to be as at peace as she seems to be.

Then there is my middle of the road child….at least most of the time….Chance.  Chance will complain and be unhappy about things, but has always very quickly come to peace with it, accepted it, and moved on.  There has always been too much going on in his head for something like medical crap to take up any of that precious space. He does though sometimes react emotionally to what’s going on, and generally speaking it’s when he comes to revelations about what something or another really means.  It’s rare, can be intense, but is generally short lived.

Then there is Abby.  My child who has done absolutely everything else opposite of how her siblings have, continues that tradition into adolescence.  Abby has always been an emotional child who wears it all on her sleeve.  You know immediately when she doesn’t like something being discussed…..she makes it clear that talking about anything medical, even when not involving her, upsets her…..she avoids watching medical shows on TV…..and not surprisingly, she deals with more anxiety, frustrations, and fears in general.  It is almost always intense with her, even when it’s something our crew considers rather minor with the perspective that we have.

What further makes this interesting to me is that this reaction each has is, in some ways, the opposite of what I would expect based on the level of intervention needed for each.  So while Madison is my most stoic, she is the one that endures the most regularly….while Abby is my most reactive, she endures the least.  And Chance is somewhere in the middle.  Of course, living it, I get that in some ways this is exactly the reaction I should expect from each based on their level of intervention.  Although, honestly, I am not sure we would have seen anything different had their roles been reversed.  It’s their personality, their make up, that lends itself to these responses.

Generally, just as I think I have some handle on it, the kids will change it up a bit and make me stop in my tracks.  A couple of weeks ago Madison came to me out of no where, wanting to know if she could take one more night a month off her BIPAP.  As it is, to maintain her sanity, we made the accommodation that she could take one night off a week.  She needed that night to look forward to…she needed a break.  While theoretically the BIPAP is helping her overnight, we have not been so fortunate to SEE a real difference, or for her to FEEL one.  There are multiple factors contributing to that, ones I have no control over (no one does), and when your 14 and HATE something, sometimes a compromise has to take place.  Looking back, I wish I had compromised initially with a night off a month, or every two weeks, but when faced with a stoic child that is absolutely distraught, you sometimes compromise more than you should. Anyway…..Madison had asked me about it one day and I told her I honestly did not have the time to discuss it at that time.  It was honest, but it was also so I had a chance to ponder the proposition. 

After a busy Saturday, a very worn out, tired Madison came to me Sunday evening to ask again.  I’d had some time to think and had come to the conclusion that I really could not, in good conscious, okay this latest compromise.  For one, she’s already off the vent 4 nights a month, which is likely more than is best.  Two, she rarely ever keeps it on all night long any way, taking it off in the dead of sleep completely unaware why or that she is doing it.  While she generally is at least getting 6 hours on, when we know she struggles the most in REM sleep, and we know that happens mostly in the early morning hours, that she is off the vent at that critical time is not good.  Finally, I really needed the doctors okay AND for Madison to not be in a tired, emotional place while making this decision.

Madison’s response was anything but expected.  My very stoic child who rarely complains and never cries, just sobbed.  And sobbed some more.  It was heart breaking, but I really couldn’t give in on this one.  Not at this time.  After a while of begging then sobbing, then begging again, she finally started to calm down.  She calmed down because, what little energy she had after a busy Saturday, was pretty much exhausted and you could see it in her face.  And just when I thought it was over (for the evening at least), she burst into tears again!!  When she finally calmed enough to speak, she explained that she had just realized it was Sunday night….our weekly Methotrexate shot night.

 “For the record Mom, I hate my shots too!!”

Very thankfully, this was something I could give in on… could wait till the next morning if need be.  She took the offer quickly and started calming down again.  My heart hurt so badly during it all, and all night long.  Yes Dear, it does suck.  Really, really sucks.

True to form, the following morning I asked Madison how she was.  She said she was “tired” which prompted me to say I was asking more how she was EMOTIONALLY doing….”Oh….I’m fine.”  And she really was.

Sigh.  I’d be whining, complaining and sobbing ALL the time if I had half the stuff she deals with going on, particularly when she has generally felt cruddy for a LONG, LONG time now.  But, that wouldn’t be living life, so I am very grateful she mostly can handle it all so well.

Several things have come to light as of late when it comes to Abby.  The first is, in her zealous attempt to not even allow a medical thought to enter her mind, she is ignoring a lot that’s going on with her body.  Things I need to know so we can do something to help.  Things that left untreated could cause some serious problems down the road.  I love that she can ignore things so well from the LIVING standpoint, but know that ignoring things can sometimes just make everything worse.  She still needs some guidance on when it’s something okay to ignore, and when it’s just not.  But that requires a LOT more conversation between the two of us.  She’s working on it….trying….and that’s all I can ask.  Abby will NEVER be my one to tell me it all, and she will ALWAYS keep it all “out of sight, out of mind” as much as possible.  We just need to find a happy median.  Someday I won’t be there to tell the doctors what all has been going on, and at this point, she’d tell them all she’s perfect if she could get away with it.

While I have come to the realization the last year that Abby is a tad bit ignored medically, her desire to ignore it all has contributed and I am realizing that more and more.  We both just need some work on this.

Of a more pressing nature, Abby goes through some serious cranky periods on a pretty regular basis.  And she can be seriously CRANKY!!  She tends to get herself into trouble at these times, and it’s only once she’s being griped at/punished for unacceptable behavior that she shares how tired she is, or how bad she feels.  There are several issues with this scenario……once in trouble, to then say you feel like crap feels like an excuse.  The thing is, I rarely question that it is what’s going on, however, it’s at that point too late for me to really back down.  I always tell the kids, feeling bad or not, if you choose to behave badly, there will be a consequence.  Second, I WANT to comfort Abby when she is feeling cruddy.  I WOULD comfort her, but she has always been one to act out rather than ask for some loving.  It hurts my heart though because I so badly don’t want to be griping at my child when what she really needs is her mommy to take care of her.  Finally, as I told Abby, I can see it now….she will be in her early 20’s and will, likely in the heat of some argument, tell me that all I ever did was gripe at her when she was feeling bad.  That thought KILLS me.  But as I told her, in that moment I pray I can remember that the way it really plays out is…..

She never tells me she feels bad TILL I am griping at her.

I wish it was obvious….I wish I knew when it was Abby being a stink and when she doesn’t feel good.  I want to comfort her….I want to empathize with how cranky you feel when your feeling bad…..I want to tell her siblings to be extra nice to her that day….I want to offer some extra hugs and maybe some snuggles.  But I just cannot tell usually, and she’s not real forthcoming in this area.  I am glad she doesn’t dwell on it, but I need to know sometimes.  Just need to.

We are working on a plan for both.

Madison is patiently waiting for her upcoming appointment with the Sleep Doctor/Pulmonologist where I have told her she can talk with the doctor about taking another night off.  I really don’t know what the doctor will say under the circumstances.  At some point we will not be able to reduce her time any more, and there is a very real possibility she needs MORE time, especially with how much she is struggling right now.  I wish I had some way to make this better for her.  I am incredibly proud of how well she has tolerated it.

She and I are both praying her arthritis stays stable between now and August.  Our rheumatologist has said that if we can keep her stable, with no more joints involved, we can start trying to get her off the Methotrexate injections.  She cannot wait!!  And I just pray daily she is not disappointed if things don’t go like we would like for them to.

We will be getting Abby a small journal where she can make notes about how she is feeling, particularly at times when she doesn’t feel like letting me know.  If nothing else, at least then we’ll have a better resource for determining how much certain issues are occurring.  Her perception of how much something is happening is very off, most likely because she so badly just wants to ignore it.  I have told her that she can write it down and forget it till the time comes we need to discuss it, but at least this way we know we are accurately conveying the situation to the doctors.

Personally, I am working on new ways to work with Abby and meet her more where she is.  I HATE punishing her not knowing pain and/or exhaustion is playing a part.  There is still a consequence to our actions, but it does need to be tempered sometimes based on what all is going on.  Mostly though, I just want to love on her more when she is feeling cruddy.

We will, no doubt, make the best of it when all is said and done but, sometimes, it really does just suck.

Friday, April 8, 2011

Choosing Hope & Joy

Several times as of late, I have thought to myself how difficult it sometimes is to choose hope & joy.  But the longer I do it….the longer I say it and show it to others….the more peacefully I get to that place for real. 

The truth is, I am not always there.  Sometimes it’s a face I put on….a fa├žade.  I do it for others because I want them to maintain hope, or I don’t want them to feel bad for us, or because I get that most people don’t really want to know the depths of the feelings that come almost every day.  The thing is though, the more I make myself wear the “happy face”, the more I feel like I am in that happy place for real.

The pain and heartache are always there, but then, so is the joy and hope and awesomeness that is this life we lead.  I am not sure I could appreciate one without the other….not fully at least.  The greatest pain allows one to fully appreciate the greatest joy.

I shared some in the “And Then There Were Five” page about having the girls with midwives, mostly drug free with Madison, and totally natural with Abby.  I mentioned there that I am not a glutton for punishment, that I am happy to take pain meds when they are needed, but that I am so incredibly grateful that I was able to FEEL having my girls……that there was an intensity that I would have missed had I had drugs in my system to dull it down.  Because, when we dull down pain, we also dull down all the other emotions/feelings too, including the amazing, good ones.

I want to feel all that this life has to offer me.  And while I wish there was no pain involved, I also know that without the pain and anguish that we go through sometimes, we would not have a reference for appreciating and fully embracing the amazing, awesome, victorious life we have. 

There is an “Oh” we hear anytime some bit of our story is shared with new people.  It’s translation is, “I am so sorry”.  I appreciate their heart felt and rather overwhelmed feelings in that moment….there just isn’t a part of our story that can be shared that doesn’t involve some level of disbelief and feeling overwhelmed.  I have become adept at quickly reassuring them that we have an AMAZING life.  Because we do!!  Every heartache has come with blessings galore…we just had to take the time and LEARN how to see them. I have come to appreciate those times because it reminds me too how amazing it all really is.

Thank you to the mom’s that have recently shared their appreciation for my attitude and perspective.  It means the world to me to know that I am able to convey how I truly feel.  Thanks for those new people that we have come into contact with recently, the ones that said “Oh”, for giving me the chance to remember how awesome it all really is.

Wednesday, April 6, 2011

Being Real

In all honesty, I am loathe to publish this post.  I am so enjoying seeing Abby’s smile first thing when I open the page, I don’t want to post something that will make that post move down!!  If you somehow missed the last two posts here, please go and read them now.  I really wish I could keep them both as the first thing you see when you come here, but alas, at some point being “real” has to happen, huh?

Before moving on though, some blog housekeeping is in order. 

I FINALLY added some more of the pages I want to have at the top of the blog!!  I added the story of the kids being born (And Then There Were Five), the “Kids Medical History” page, and the “Mito What?” page.  Just in case your quick to scroll past the tabs, thought I would mention that there are new ones there.

I may or may not manage to get all the posts I am working on right now posted this week, however, it might be a busy week here if I am as productive as I’d like to be!!

Finally….THANKS for all the awesome comments on my last post!!  Love hearing from you all….more than I can say.  So, if you’re here, considering posting a comment, please do!!  It really does give me the boost I need to keep going with this….well, and not feel like I am talking to myself that is!!  If you don't have time to make a comment, click on one of the "reactions" at the top of the post and share your feedback that way.  Something....just let me know your here and getting something out of all this rambling!!!

And now for the regularly scheduled post……

Medical Misadventures, Mono & Mycoplasma

It’s never boring over here medically, but we have been busy with so many awesome things, I have had “better” things to write about!!  However, the medical misadventures continue even in the midst of such happy times.

Since our last medical update on 3/21 we have been almost as medically busy as we have been busy in every other way.

I guess I should start with the “misadventure” part first. 

I almost conveniently failed to include it. 

So, last Thursday I was sitting here at the computer slaving over inputting a bunch of stuff so I could wrap up our FSA for 2010 (the thing that had to be faxed in by midnight OR ELSE!!!), when my phone rang and a Ft. Worth number came up on the screen.  I answered and it was the secretary for Palliative Care, Patty.  She says hello and tells me who she is….I respond with my usual, “Hi Patty, how are you today?”.  In the back of my mind I am thinking she is calling to remind me of my appointment with them the next day to talk about Madison.  Patty responds with she’s good and is just calling to see if I am on my way and running late.

WHAT!!??  ON MY WAY?? No, no, no….the appointment is for the NEXT day….isn’t it??  Oh my, let me get my calendar (AKA my life line) and confirm that I am right and Patty is horribly mistaken.  Patty was right….I on the other hand, was horribly mistaken.

I missed a doctor’s appointment.  Not a critical one, but an important one. I know we do hundreds of appointments a year, and not only do I make every one of them, I am prepared and mostly get to each of those appointments early, because well, that’s just my thing, so this really shouldn’t get to me, but it does.  I have only blanked on one other appointment in all this time, but even that one “came to me” as soon as I heard the office on the phone!!  Not this time.  I was absolutely clueless.  It was CLEAR by my response to dear, sweet Patty that I was clueless. I was mortified….Patty was reassuring that all would be okay, we’d just reschedule, and took part of the blame for not having called to remind me of the appointment.

I have decided that I am becoming ADD.  And if nothing else, I am no longer capable of multi-tasking apparently, 

OH MY!!!

Now for our other medical adventures, which can all probably be considered misadventures too huh.

The kids saw their GI motility specialist for our regular follow up.  On the positive side, we had actually made it three months in between appointments like we plan for, and so seldom seem to make!!  There were a few phone conversations during the gap, but I like those much better than being in there all the time, and Dr. O does too.  As a reward, we have actually scheduled to not see him again for FOUR months!!  In 3+ years of seeing him, we have never gotten that long of a break.  I don’t dare hold my breath we will make it that long, but it is at least nice to say we’ll try to make it till then.  Only time will tell.

Chance was (amazingly) my easy one for a change!!  I wish that meant that all is well, but rather, it is because we are doing the best we can with a rather lousy situation.  His GI tract is what it is, and that we are not needing more intervention right now is as successful as we can probably hope to be.  We did discuss some abnormal liver labs from Houston last fall I learned about in February and had those redrawn.  Thankfully they came back normal, so whatever was happening then has resolved and I will happily put my head back in the sand about any possible issues with that organ thank you!!

Madison needed a clean up around her g-tube site again….something we are apparently going to need now and again until such time we decide to go ahead with surgery to move it.  That we have avoided infection and actually made it three months without the need for a clean up IS a huge improvement we will happily take.  After the multitude of times that we have now removed the tube, done the clean up, and put the tube back in, she is finally going into it with total ease.  She even suggested we put in a new g-tube this time since we would have the old one out already, which made perfect sense.  I should say, she is at ease with it as long as I am the one doing the change.  Dr. O’s feelings are a little hurt she won’t let him, but as she said, at least she is letting someone!!!  I can totally see her doing her own g-tube changes before too much longer!!!

Due to a couple of GI bleeds the week before our appointment, and our suspicion that she might be backed up even with going regularly, we headed over to the lab for a KUB (abdominal xray).  And due to a low Albumin on some labs done late last year, we decided to check that out too.  Her albumin was back to normal, and the KUB was clear.  I am not sure what to make of the KUB…..if she is not backed up, why is she bleeding??  Kind of suspect there is no clear answer other than that it’s Madi we are talking about and she likes to throw us curve balls.

I had several things to discuss regarding Miss Abby.  She’d been going through a gut slow down for about a week at that point, and while still maintaining her weight and such, her intake was pitiful and she was back to taking teeny tiny bites, feeling food get stuck, and getting very little in before feeling cruddy.  She’s also been dealing with more intense gas pains that were not helping the situation.  In general, things were just not working right.  We decided to increase the two meds she is currently on (Bethanacol and Amitriptyline) and see if that would make a difference.  Additionally we will be trying a new probiotic to see if that helps at all, and we decided to do some nutrition labs just to make sure she’s managing to get what she needs with her very limited diet.

I am thrilled to say this last week has been MUCH better!!!  The increase in medications has clearly made a difference for her.  Her labs came back looking good too, so limited diet and all, she is getting what she needs to thankfully.

Finally, we discussed when the right time is to seriously consider getting Abby into the Cisapride study in Houston.  It would be, at least initially, a big commitment because we would need to be there regularly in the beginning and any time we might make a change in dose.  It also has risks associated with it that may actually preclude her from participating.  I think of the three kids though, she is both the one most likely to qualify for the study AND the one most likely to get the most improvement from the medication.

Up to this point, I had been thinking that we would consider the study when things got worse for her, which is not totally unreasonable.  However, it occurred to me that it wasn’t so much that I thought she needed to “get worse” to try the med, but more that I didn’t want to make the commitment to being in Houston so much that was holding me back.  Truth be told, if we lived there, she would have been on it already.  I decided to ask Dr. O what his thoughts were on it and shared where I am with it.  I recently considered the possibility that waiting till things were worse might not give the medication as much of a chance to work as it might if we did it before there was further progression.  Dr. O agreed this was a real possibility, and further that one never knows when they might pull the study, and if we have not had a chance to try it before that happens, getting it on a compassionate basis after the fact would be impossible.  If we can get her on the study and it makes a difference for her, if they stop the study our odds of getting the medication still would be considerably improved.  When all was said and done, we both felt like it makes sense to pursue this option now rather than later.  With that, I am attempting to get her in to see the doctor there running the study either later this month when we are scheduled to be there, or in June when we are due back.  We cannot really consider starting her on it till after camp in August anyway, so we have some time to get through the process involved.

Mostly…I am just glad to have made the decision and have Dr. O in agreement.  We will now just have faith that if it’s meant to be it will happen accordingly!!

We had our first appointment with Pain Management for Chance and it was an eye opening, and rather heart breaking process.  While none of the kids deal with much intense pain (very thankfully), once we started talking about it, the reality that they all three live in some level of chronic pain was a difficult thing to consider.  They have become so used to it, have found ways to ignore it, and generally just don’t let it affect them in an obvious way, but the reality is, chronic pain takes a toll even when your pushing through it.  And chronic pain takes energy none of them have to spare.

I was THRILLED with the team approach and that the things we are talking about are NOT medications to deal with the pain, but rather things like acupuncture, biofeedback and PT.  While Chance has some pain daily, it is NOT to a point where medicating it would make sense.  He is tolerating it and these new methods will only serve to improve his ability to cope….ALWAYS a good thing!!!  We start next week with PT and he’ll be starting the acupuncture and biofeedback a week later.

In other news, I currently have a real dislike for any illness starting with the letter M!!!

We did make an appointment and get in to see the pediatrician as I suspected we needed to on that last (medical) post.  We were able to do labs a few days earlier, and while I was glad to hear the issue was not her being anemic again, the reality is that would have been the “easy” answer.  Her labs looked good though, so we were left at square one on why she took another nosedive energy-wise.

However, on exam, we got a better idea.  While it had been a month since the mono diagnosis, and we expected to be released to get back to horseback riding therapy (when she had the energy), upon exam her spleen was still swollen and painful.  Essentially, this means she is still actively fighting the mono, which would help to explain her continued exhaustion and feeling cruddy.

I got the chance (and took it) to talk more intensely with our pediatrician about the immune issues Madison is dealing with, and my intense desire to get a better handle on it.  While she did not have the answer, we did talk about ways we can try to improve things here at home.  Hand washing for Madison will now be obsessive (really??  Wasn’t sure we could get more anal in that respect, but perhaps so) and she’s really encouraging more organic foods and fish oil.  She touched on even more limited exposure to people (we already pretty stringently keep her away from sick people), but keeping her in a bubble is NOT quality of life, so we have limited this as much as I am comfortable doing it & our ped understood.  While I didn’t leave with any profound answers, it was good to know she is in our corner when it comes to getting some handle on this issue.

So the Mono monster is still on the scene.

When we did her labs to look for anemia, we also re-tested for Mycoplasma.  It’s been 4 months since she was diagnosed with her second Mycoplasma infection (first was with mono the first time in early 2009) and treated for it.  At this point, it should have shown that she had fought it (elevated IgG), but not be acutely fighting it (normal IgM).  The results were not ready when we were in the office but they assured me they would call when they came in.

Last Wednesday it occurred to me that I had not heard back from them, and really suspected that might mean it was normal and they had just not had the chance to call. I left a message Thursday morning asking about it, and knew as soon as I answered the phone later that day and heard our ped’s voice on the phone, my suspicion had been wrong.  When things are normal, the nurse calls me.

So Madison’s Mycoplasma testing shows her to still be acutely fighting the bug.  The delay in getting the results to me was due to the ped making some calls to other doctors to get some feedback on what this means.

After talks with both infectious disease and immunology, we are going with the possibility that her IgM to Mycoplasma may stay elevated for as long as 12-18 months, as sometimes happens.  It’s a funky bacteria with no cell wall and the ability to go intracellular…..all of which just means that while typically your IgM to a bacteria drops back to normal after a month, when it’s Mycoplasma it can still say your actively fighting it even when your not anymore.  How’s that for confusing!!! 

With the added complication of the reactivation of the Mono, we are thinking her current symptoms are related to that and not the Mycoplasma, but there is only one way to know for sure….a nasal culture.  For now we will not do further testing unless her condition changes in some way, but know we can do this further testing if need be.  Both of the doctors she talked to expressed considerable concern about Madison’s immune status at this time, and after some discussion we all agree we need to get a better handle on this ASAP.

So, yeah, both Mono & Mycoplasma are in the house!!  Not liking the M illnesses right now at all.

Madison HAS improved some.  She has made it to aquatic therapy, out to Mom’s for a visit, and through two very busy Saturday’s without too significant of a set back.  She’s still insanely fatigued, but not feeling quite as bad in general as she was.  We have seen a melt down (so very unusual for my girl) and an intense desire to snuggle….something I LOVE, but something that makes me uneasy at the same time because it means she is feeling pretty awful right now.  April & May are busy months, and include some much loved activities, so we really need her to stay as stable as possible.  Hoping and praying we can get through this time without too many setbacks!!

Finally, we got back into the orthodontist with both girls after far too long.  When things get crazy it seems like the orthodontist is always the one appointment I can cancel, but this has to stop and we really need to make sure we get in as scheduled this year.  They were very nice about it but the orthodontist did threaten to put a tracking anklet on me so he knew where I was all the time……don’t worry, I told him he’d be exhausted just monitoring it if he did!!!  LOL  Both girls got new colored bands and some new wires and we are due back early next month for bottom braces finally!!!

Every week, sometimes every day, is a new adventure here.  We have already had some warm days, and with those come the excitement that winter is ending, but at the same time, because we live in Texas after all, the realization that summer will be here far too quickly. We are enjoying the cooler times of the day, and any cold front we can get to blow through while we can!!!

Upcoming medically:
First PT appointment for Chance
First Acupuncture & biofeedback session for Chance
A week in Houston at the end of the month, including:
ENT & hearing tests for All
Dr. Koenig (Mito specialist) for all
Immunology for Madison
Cardiology/ECHO & EKG for Madison
Pulmonology for all
GI motility for Chance (and hopefully Abby)

Thanks for your continued prayers!!!  Next installment will be far more fun to read, I promise…LOL.

Tuesday, April 5, 2011

A wonderful, Awesome Kind of Surprise


Thanks to our awesome friends and family, an awesome organization, & Cakes by Teesha, and Maggiano’s Northpark, we gave Abby a wonderful, awesome kind of surprise!!!

Birthday party planning has become the bane of my existence.  I can coordinate complicated medical care for three children, educate them, make it to 100’s of appointments a year, and do all the typical day to day stuff, but ask me to plan a birthday party and I am either jinxed or just inept, and I am really not sure which it is…LOL.  Add in that while in general I consider myself a reasonably creative person, I have a real block when it comes to planning birthday parties, and well, we seem rather doomed in this arena of life.  I am seriously considering hiring out for any more in the future…LOL.  The kids deserve them & I love the idea of wonderful parties to celebrate the amazing milestone that another year is for them, so the will is there, it’s the way that’s lacking apparently.

This year happens to be a real milestone year for both Abby (turning 13) & Chance (turning 18 in July), and I have promised all three REAL parties this year.  Why oh why do I do that to myself??  LOL  Just be prepared friends….I am seriously going to tap someone to help me with the other two this year!!

Miss Abigail’s birthday, as you can see by the posts I made way back then, was actually back the end of January.  We had at least a week in Houston coming up, so we knew there would be a delay, but did actually start planning for it then.  We have had no less than three dates chosen that we were working towards and due to one illness or another, we’ve had to postpone.  I was beginning to think it was never going to happen!!!

But it DID happen this last Saturday, and it was wonderful & amazing & just as awesome as my “baby” girl is!!!!

To our friends and family who made it without a ton of notice (I am learning not to plan too far out anymore)….THANK YOU!!!  You made a special milestone for Miss Abby into something she’ll never forget.  She is still hugging me a few times a day just because, and more importantly has worn a smile constantly since then!!  YEA!!!

To and Teesha our cake designer (Cakes by Teesha)….THANK YOU!!!  Abby’s special cake was perfect, tasted amazing, and was a perfect part of an incredible evening. is an amazing organization that I only recently heard about.  They are a non-profit whose mission is to provide custom celebration cakes and other treats to families impacted by life threatening illness of a child.  They understand that simple things, like a birthday cake, are luxuries to a family battling illness.  Their goal is to create a custom cake for the ill child or their sibling that will provide a temporary escape from worry and create a positive memory during a difficult time.  We cannot thank them enough to providing this cake and the amazing memories that came with it!!!!

To Maggiano’s Little Italy restaurant at North Park….THANK YOU!!!  Elaine helped me plan the evening, made sure we had an awesome room with a veranda we could go out on, and our location made the party for Miss Abby super special.  It really was the perfect place for this amazing evening.

All of these people made all the difference in surprising Miss Abby with a real party, a real celebration of her awesomeness!!!!  All of these people made her mom look pretty adept at pulling off a party AND keeping the secret so she was surprised!!!  All of these people took what’s been a rough couple of years for Miss Abby in far too many ways, and erased it all to be replaced with an evening of LOVE and adoration.  Thank you seems awfully small when you realize the impact this one moment in time has….but THANK YOU all.  From the bottom of our hearts.

We did it!!  We somehow got all the plans made, picked up and delivered the cake & other party stuff (thanks to my love, my hubby), and got her to the location without her knowing what was going on!!!!

I will leave you with pictures of the people who we love and who truly made the night special….our friends and family with the birthday girl......

Abby & tatum

Sarah & Abby

Sherry, Ab & Tatum

Freddy, Ab & Michael

Abby & Kim

Memaw, Ab, Aunt Tootie & PawPaw

Grandma Dot, Ab & Pawpaw Kin
Grandma Claire, Clara Faye, Ab, Uncle David, Aunt Elizabeth, Edward, & Grandpa Jerry

Christy, Sarah & Abby

Abby & Aunt Tootie

Abby & Clara Faye

Kisses from Miss Berta

Berta & Abby
 We ended the evening with the girls releasing the balloons while making wishes.....

 We love and thank you all for making this special evening happen.

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