Off on another wild adventure for the McNair’s!! We head down today for the week and will get at least 8 appointments in while there…..actually a “light” week for us!! All three see Pulmonology on Tuesday, Madison will see her rheumatologist and be hooked up for a 24 hour halter monitor on Wednesday, and Chance will see the motility GI nurse and the girls will get sleep studies done on Thursday. Easy peasy…easy peasy.
Prayer requests for the week…..
That our pulmonologist is not too annoyed with me that we have still not started oxygen with Chance & Madison. There are a hundred excuses…..not one good enough….but I will spare you all. If I am honest, it’s mostly me struggling with the idea. I am still trying to wrap my mind around it. Reality is though, it might make a huge difference for the kids and I just need to get over myself and help them go into it with the right frame of mind.
That our rheumatologist finds a decrease in inflammation in Madison’s knee’s, indicating that the steroid injections have worked for now. We are almost 2 months out since they were done, so we should be able to tell where things stand. If they have not reduced the inflammation, we will be faced with starting another medication to gain control, and no one likes the idea of starting something that will make her even more susceptible to infection.
On the halter monitor we’d actually like to see her have one of her heart-beating-hard episodes in hopes that we can see what might be happening during those times. At the same time, I would be thrilled if it shows nothing and we are able to walk away with good news.
That Chance will have gained (even just a little) weight.
And finally, that the sleep studies give us the information that we need to make adjustments to Madison’s Bipap, and that either there is a clear cut reason for Abby’s fatigue that are sleep related (with a correlating easy fix please) or that her sleep study looks pristine.
Some of these answers will come while we are there this week, while the rest will trickle in over the following week or so. I will keep you posted.
Having a “light” week means we will get some good time to spend with family and friends and we are looking forward to it SO MUCH!! We will no doubt be entertained, loved on, and very cared for while we are there. Sure does make going down so much easier to do. Cannot even imagine making it down like we do without that blessing.
In other medical news….
Chance did at least maintain his weight at his last weight check. While we would have liked to see even a small gain considering the insanely high number of calories he’s taking in daily, no loss is good too. We will see how his weight looks this week, then he’ll have another weight check on the 10th at the peds office. With the lack of gain, he now needs to more consistently get in 3 supplemental drinks a day, and we are going into the next plan of action…..checking other organ systems in case they are stressed and consuming more calories. We will see pulmo this week and will hope that perhaps the o2 at night might make a difference, and will do an ECHO to check his heart when we are back in Houston on the 17th. We will talk with the Motility GI nurse this week on what the next steps will be if neither of these systems appear to be the problem.
Otherwise, the boy is doing pretty well right now!!!
Madison is having some “female problems” that I won’t share here and we need some prayers that we can find some solution for. She’s worn out dealing with it and really, really needs a break.
She is <knock on wood> 14 days out since her last antibiotic and is staying infection free thus far!! We are still in that 21 day window that she likes to come up with another one, so not quite out of the woods, but getting there. Sincerely praying she can get a break for a while. We will re-test her Mycoplasma levels on the 14th and would very much like to see those numbers come back not showing something chronic.
Fatigue is still pretty intense, but 2 weeks of no infection means I am seeing at least a little improvement.
Abby started Florinef about a week ago to help with her low blood pressures and at least thus far, we are not seeing any negative side effects to it. Not sure how much positive we are seeing yet, but watching for them. Hope is that it will lower her heart rate and stop the postural dizzy spells she deals with daily.
Otherwise she is really behaving herself right now!! Such a good girl<grin>.
Please keep our little friend Cooper in your thoughts and prayers right now. He is, quite literally, fighting for his life and he needs comfort, as do his family and friends.
Thanks so much for the thoughts and prayers this week!!! It’s been more of a trial than usual to get everything in place and taken care of this time, but all appears to be on the right track now and we should have a productive week.
Monday, January 31, 2011
Saturday, January 29, 2011
{We Can Make A Difference Weekends: United Mitochondrial Disease Foundation & Energy For Life Walk}
To read more about the UMDF, check out our Pay It Forward With Us link above.
This organization always hits close to home, but maybe a little more acutely right now than usual. We have had a hard few months in the Mito world….we have lost far too many precious children, and are witnessing the epic battles of far too many more that are, quite literally, fighting for their lives right now. Thanks to medical science, the doctors have the means to help them fight, but not on the level of where the problem really lies. They cannot help the mitochondria work more effectively, we just simply don’t know how to yet.
I am asked regularly to share what Mitochondrial Disease is….and I have a pat answer….We have mitochondria in all the cells of our body, except for our red blood cells. The mitochondria take the food we eat and the oxygen we breathe, and convert them into a chemical (ATP) that can be used by the cells for energy. When the mitochondria are not working correctly, not enough energy is able to be produced and this results in organ systems not able to function the way they are supposed to, even potentially failing all together. It’s simple, gets the job done, and isn’t emotionally charged. I think for most, it’s how they want to hear about it, and I am okay with that. At least they know what mitochondria do now.
A friend recently shared that her daughter’s science teacher was talking about mitochondria in class one day, from the perspective of it being a way to trace human remains back through the maternal line. When her daughter mentioned that there is also mitochondrial disease, the teacher denied it and refused to believe it was possible.
Within the medical world, it’s gaining acknowledgment, but we still have a very long way to go before the medical establishment in general really “gets” this disease. There are more misconceptions out there than factual information, and this affects care for so many. It cannot be put into a box like most diseases and this just doesn’t work well within the system that we currently have. It’s getting better, it’s just not there yet.
It’s difficult to comprehend, but this disease really has no medicinal treatment, much less a cure. There is no medication that is targeted at the root of the problem, just medications to try and control the after affects. There are medicines and supplements that are thought to help facilitate the functioning of the mitochondria, but they are mostly unproven and only sometimes seem to make any notable difference. We play a game of trying to catch the organ systems that are struggling so we can put band-aids on them. And then we pray…..pray that we caught it early enough, pray that the treatments we choose will do more good than harm, pray that no other organ systems will get so stressed that they start to struggle, and pray for relief. For a pause in the action. For some time for them to recover, even just a little, before the next thing hits. And we watch….constantly….for any small signs of impending trouble. And then we either pat ourselves on the back when we catch a subtle hint of something and find the reason, or we struggle with coming to terms with having missed those subtle signs and catching something late. And sometimes, well, sometimes none of it makes any difference. Sometimes things go south with no warning at all, and there really isn’t much you can do. We NEED treatments.
Treatments = Hope. Treatments mean the possibility of having the time to wait for the cures.
All this means, research has to be funded and ongoing. Without research there is nothing…no treatments, no cures….no HOPE. At least not on the medicine side of things. We will ALWAYS have hope….but we need the tangible parts too. We need the weapons to fight this thing with.
As we watch so many around us grieving the loss of their child, or in the hospital & at home fighting for every moment, we ask you to consider supporting the UMDF and their mission. You can either donate directly to the Foundation, or support our friends in Houston during the Energy for Life Walkathon coming up next Saturday, February 5th.
Thursday, January 27, 2011
{Things I Love (about Abby) Thursday}
What birthday is complete without a week of celebrating…..or a month….you know, whatever it takes!!! With the craziness that is our life, it shouldn’t surprise anyone that we really do actually somehow find ways to keep celebrating for as long as possible….just to get it all in somehow!!
I wanted to write more about Abby this week and it occurred to me today’s alliterative title could work as another chance to brag on my girl.
Those expression filled eyes!!! We teased at Halloween that the evil look she was giving as a zombie-prom-queen-jealous-runner-up were pretty much the same one she gives when she is unhappy with you…..she can make you cringe a bit!!
They are also the eyes that can express the deepest love and the greatest of joys. People say the eye’s are the windows to the soul, and in the case of Miss Abby, I believe it.
Those freckles!! Just a light sprinkling on the cheeks and over the bridge of her nose…..just enough to notice and make an impression. I am so glad she shares them with me!!
Her passion!! Every emotion and feeling, is felt passionately by this girl. There is never any question where she stands with something, nor that she will fight for what she knows is right.
Her leadership…comes naturally, and without being bossy. I marvel at how other people follow her lead, and how effortlessly she does the leading.
Her humor….the girl is FUNNY!!! Her timing is amazing, and her ability to do impressions is pretty remarkable. She has been, and always will be, the comedian of the group, and truly loves making others smile.
Her zest for life….is contagious!! No challenge seems too daunting and she is willing to give it her all. She is, I think, an adrenaline junky like her dad.
Her selflessness…is legendary!! The first time I realized how deep and real it was, she was 5 years old and deciding what she wanted her Wish from Make A Wish to be. She came to me and wanted to know if we could “go someplace snowy so Madi can play as much as she wants and not get too hot.” As much as anything else, her wish was for her sister to be able to participate and not get sick….amazing. She has continued to amaze me with her giving spirit.
Her sense of self/being different…..unafraid to be unique and creative with her life!! LOVE IT!!
Her intelligence….smart as a whip, academically and otherwise. She is the child I worry the least about being out there in this big, bad world. She is street smart without having experienced being on the street.
Her art…..I love sharing this passion with her, and so awe struck with the innate ability she has.
Her strength……I could not be prouder of how she continues to work through her fears!! Sometimes, feeling so deeply means so much of what our family deals with hits her the hardest. I have watched her grow and find ways to cope over the years and while I wish I could take it all away for her, I am comforted knowing she is gaining needed skills for life.
Her spirit…..unique, deep, loving, intense, compassionate, sincere, selfless.
With each day, and every new challenge we face, I am continually inspired by the amazing young lady Abby is. I am so very proud to be her mom!!!
I wanted to write more about Abby this week and it occurred to me today’s alliterative title could work as another chance to brag on my girl.
The Things I Love About My Abby-Gabby-Gooby-Girl
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| Wish Child Ambassador Wish 100 2009 |
They are also the eyes that can express the deepest love and the greatest of joys. People say the eye’s are the windows to the soul, and in the case of Miss Abby, I believe it.
Those freckles!! Just a light sprinkling on the cheeks and over the bridge of her nose…..just enough to notice and make an impression. I am so glad she shares them with me!!
Her passion!! Every emotion and feeling, is felt passionately by this girl. There is never any question where she stands with something, nor that she will fight for what she knows is right.
Her leadership…comes naturally, and without being bossy. I marvel at how other people follow her lead, and how effortlessly she does the leading.
Her humor….the girl is FUNNY!!! Her timing is amazing, and her ability to do impressions is pretty remarkable. She has been, and always will be, the comedian of the group, and truly loves making others smile.
Her zest for life….is contagious!! No challenge seems too daunting and she is willing to give it her all. She is, I think, an adrenaline junky like her dad.
Her selflessness…is legendary!! The first time I realized how deep and real it was, she was 5 years old and deciding what she wanted her Wish from Make A Wish to be. She came to me and wanted to know if we could “go someplace snowy so Madi can play as much as she wants and not get too hot.” As much as anything else, her wish was for her sister to be able to participate and not get sick….amazing. She has continued to amaze me with her giving spirit.
Her sense of self/being different…..unafraid to be unique and creative with her life!! LOVE IT!!
Her intelligence….smart as a whip, academically and otherwise. She is the child I worry the least about being out there in this big, bad world. She is street smart without having experienced being on the street.
Her art…..I love sharing this passion with her, and so awe struck with the innate ability she has.
Her strength……I could not be prouder of how she continues to work through her fears!! Sometimes, feeling so deeply means so much of what our family deals with hits her the hardest. I have watched her grow and find ways to cope over the years and while I wish I could take it all away for her, I am comforted knowing she is gaining needed skills for life.
Her spirit…..unique, deep, loving, intense, compassionate, sincere, selfless.
With each day, and every new challenge we face, I am continually inspired by the amazing young lady Abby is. I am so very proud to be her mom!!!
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