Why It Is Important: McNair Kids Camp Fund 2013

Wednesday was hard....physically & emotionally.

It reminded me why getting the kids to Camp Korey is so vital. Why having something to look forward to, and creating memories to hang onto, is so important.

 

Disney Channel & Iphone make it bearable

Madison and I started the day before the sun came up. We were on the road by 5am, and at our hospital by 6. By 7 she was in pre-op, where finding a vein willing to cooperate took two sticks, digging, and two different people to make it happen.

Madison made sure to get the name of the medic-turned-IV-placer so she could plug her into her phone, for next time.

Yes, my 16 year old daughter has a list of blood takers and IV placers for every hospital and lab we need to go to. Knowing when we find one that can make it happen, as painlessly as possible, we ask for them again.

There will always be the need.

By 7:45, she was doped up on Versed and rolling down the hall, away from me. I watched and marveled how "old hat" this is for her. How she casually (albeit a little drunkenly) chats with the nurses wheeling her away, and how, without trepidation she tells me she will see me in a bit. Then I sighed, because ever so often it hits me....this isn't "normal"...and she is amazing, brave, and incredibly forgiving to us all for what she must endure at our hands.

As I walked to the all too familiar waiting room, and went through the routine of telling (the same nice lady I see almost every time) my child's name, I found myself looking for some spark of recognition from her. She seems to be one of the few that doesn't recognize me on sight. But then, she hasn't met my children...

They are always in an operating room when I am there.

They are the spark people need to recall that last encounter...they are the reasons to remember. I smile to myself thinking of the impact they have, and how they always have something to say or do that makes people smile.

I follow my usual routine of running to Starbucks down the hall, grabbing (more) coffee and something to eat, and willing it to take at least a few minutes so I am not left with my thoughts, and the less than comfortable chairs, for too long. I wander out in the hall, hoping to see someone I know (which happens far too frequently, considering I am standing in a hospital)...someone who can fill a few more of the minutes I have to wait. I wander for a few minutes, then hurry back to the waiting room, worried I might take too long and miss the doctor. This time, I see the surgeon as he hurries down the hall to join in on the procedure, already in progress in the OR. I know his part won't take long, so I make my way back and sit down.

Sometimes, the plans we make going in are not always how  it pans out.

The plan was to:

1. Put her under to scope her esophagus and stomach to see how our control of reflux was going, and to make sure we didn't see any signs of issues from the iron she takes, or yeast, due to all the antibiotics she is on.

2. To remove the long feeding tube that was placed after her surgery in April, that we had been unable to remove here at home. We tried twice, with the second attempt leading to another abscess.

3. To have our surgeon fully examine the g-tube tract for signs of another fistula, or an explanation for the latest abscess.

And 4. To replace the long g-tube with what she has always had, called a "button" g-tube.

Madi was desperate to get that long tube out and her old one back in. Desperate!! The long one hangs down a ways, doesn't clamp (leading to messes when trying to hook up to her feeding pump), is more obvious, and in general, just isn't what she wants. In this life, she has to put up with enough, so we do all we can to make it as unobtrusive as possible.

How things actually went:

1. We didn't have the anesthesiologist we were told we would have. Not a huge deal, but I have gotten used to not having to explain everything and convince them we should do what we know works. I hadn't prepped for the discussion, and with that, I did not advocate for Madison as well as I should have.

2. While the scope went as planned, there was a new finding. A nodule was found that hasn't been seen before, but we are pretty sure it's something that happens sometimes when you have been on PPI's (reflux meds) for too long. Lord knows she has, and we talked again about the need to do surgery to hopefully stop the reflux and allow us to get off the medication. Biopsies were done, so we will know more next week.

3. The surgeons inspection of the g-tube tract was revealing. While not another fistula, there is a fissure (tear) running from the stomach to about halfway up the tract. Barring us allowing the g-tube tract to close, something we cannot do, the healing process is going to take time. How much is anyone's guess.

4. This fissure means we could not switch her back to her old g-tube type, and another long tube was placed. The button type would have put enough pressure on the stomach side of the tube, it would cause more tearing and there is a real risk of the balloon that holds it in place moving into the tract and causing more damage.

I knew immediately that Madison was going to be upset with this change in plans. It was, after all, the ONLY part that she cared about.  My feeling that she would wake up from anesthesia and immediately pat her stomach to feel the new tube, and be confused when it wasn't there, apparently is exactly as it went.

I had to chuckle at our doctors a little...our GI and surgeon are friends, and according to our GI, they apparently had a bit of a fight over Miss Madison. GI was all ready to place the button g-tube when the surgeon came in and promptly told him no way. GI insisted he was going to do what his patient wanted....surgeon said no....GI insisted...surgeon threatened to walk out...and they were at an impasse. Once the surgeon found the fissure, even GI couldn't disagree that the button would cause more problems, but he wanted me to make sure Madi knew he fought for her, and was bullied by our surgeon....LOL!

As expected, Madi was a mess when I got back to recovery and could explain what happened. I haven't seen her that sad in a long time. And my heart broke. And there was not a thing I could do to make it better.

And then....we talked about camp. Little by little, as we were discharged and made our way home, she smiled a little more, and distracted herself with camp plans. The Dr. Pepper with "good ice" from Sonic helped too.

What happened, in the grand scheme of things, was not a big deal. She has done the long tube for 3 months, and put up with it like a champ, and she can do it again. This was one of those quality of life moments....she needed the things to go back to the way they were... she needed this "win".  She was disappointed, and sad, and faced with a set back she didn't need.

She also proceeded to do what Madi does so amazingly well....she quickly started getting "over it".

My day wasn't done, oh no!!

A drive home, a switch out of children, and I was on my way back with Chance. Wednesday was the day we met with our pain doctor to try and get him some relief and a plan. For reasons we still don't understand, Chance has been in a decline since January, that has included a significant decrease in physical stamina, constant muscle pain, a week long episode in April of severe muscle pain, and, as time has gone on and his body has been stressed, Neuro issues, GI problems, and an increase in fatigue.

After consulting with everyone I can think of, making changes in physical therapy routines, and testing what we could think to test, he & I were finally faced with the need to start treating the symptoms and hoping for some relief.

The appointment went well, and we have a plan that we hope might work. It won't fix whatever the problem is exactly, but at this point, pain relief is a huge need.

Distraction is too. Camp Korey is an awesome distraction, coming exactly when he needs it. Coming exactly when I need it too.

Thursday, my inadequate advocating for Madison came back to bite us on the butt, when she woke with every muscle in her body (even her tongue) in severe pain!! It was a long day, with lots of phone calls and worry, but we finally were able to determine that she was given something she hadn't had before, and that is likely causing this problem. Once we figured that out, pain meds were given, and by evening she was in much better shape.

Days like these, they are hard, but they remind us to hang on even tighter to those things that mean so much to us. We are so very grateful for each and everyone one of them.

We are steadily making our way to this goal....with your help!! We thank you, from the bottom of our hearts, for your support.

I have extended the deadline on the fundraiser to Sunday, and the raffle drawing will take place Monday morning. If you feel led, we are still in desperate need of your help at www.youcaring.com/mccampfund

We fly out tomorrow evening, deliver Chance & Madi to Camp Korey on Sunday, and Abby on Monday for the start of another amazing, life changing week. All thanks to you.

Thank you.

WC Day 29: It’s Always Something…..

Hospital prep again!! Argh….why didn’t I make notes when getting Madison ready a couple of weeks ago?

This time, Chance is going inpatient.  Not sure if you all remember, but he and Abby had an appointment with our GI doctor when Madison was inpatient, and from that appointment, tomorrow’s admission is taking place. After some talk about where we go from here in dealing with Chance’s large bowel dysmotility, it was decided that we need to do Colonic Manometry again, and see exactly where things stand. So at least this admission is a little more “planned”, as if that somehow makes it less stressful, right!?

To do the Colonic Manometry, we need to admit him the day before and do a mega clean out while supporting him with IV fluids. Wednesday morning he will go under anesthesia and they will place the probes needed for the testing. Because anesthesia can slow intestines down, we then need to wait till the following morning (Thursday) before doing the testing. The testing Thursday will take a big chunk of the day, but then we should be discharged and head home.

This testing is not fun from start to finish…..clean outs suck; anesthesia makes Mom worry; laying flat on your back and not being able to get out of bed for the better part of 2 days has it’s issues (although I wouldn’t mind some forced bed rest sometimes); and getting through the testing itself is not pleasant.

I am proud of my son.

This was HIS decision, and he made it even knowing what it means. This will be his third time getting through the testing. He knows the information is invaluable, and that we need it to guide treatment decisions, so he is going into it with a good attitude.

He is a pretty awesome young man.

Now, in other news…..

Madison is continuing to heal like a (piggy) super star!! My mom (who is again saving our butt by being here with the rest of the kiddo’s while I am away) will bring Madison to me Wednesday for her 3 weeks post op check up. This latest dressing allows for us to see more of what is going on there, and as of Saturday, I swear it’s all but healed!! Our other big news on the Madi front is that my amazing daughter learned how to do her own dressing changes, even with some changes that made it a little more complicated, so she was able to go out with her siblings and visit my mom and dad for a few days!! I can and do a whole lot of medical care around here, and mostly with pleasure, but really do not like wound care. Not sure why, but it is one thing that will get to me faster than anything else…LOL. So for Miss Madison to be able to do it herself, just means it’s not all on me, and I like that….a lot!!

Miss Abby is my favorite child right now, with little drama (well the medical kind) and lots of hugs for her tired mom. She completed a painting for Wish Night last week and did an amazing job. We cannot wait to see how it does at the auction. I may have to pay her to keep being drama free for me ;-)

And finally, Michael, my love.

He, like Abby, is mostly drama free, medically speaking. Also like Abby, drama in general still sometimes happens. I still love him though ;-) He took a nice long ride yesterday with friends, and thoroughly enjoyed himself, even if the ride was cut a little short for him due to ostomy appliance issues. A dear friend wrote about the ride on bike forums and said it so well, I am going to quote him here…..

"The old worn out saw about a picture being worth 1000 words would apply to that photo above. I bet there are 1000 people who if they saw that picture would smile from ear to ear. All day. All week.

That's what courage looks like. I could never do that. Michael McNair can. He did. That takes some kind of special spirit to overcome adversity and soldier on. It was 11 months ago that through the large bay windows of Baylor's ICU unit that I looked down on the spot along the Wetland Cells near the Freedman's Town of Joppa, Texas where we were yesterday. Michael was on life support in the worst way, on a breathing machine and in a coma after being hit by a car while riding his bike. Month and a half in a coma. With all the noise of the machines keeping him alive, frankly I thought this day would never come. But it did. The sun never shown brighter. The wind never calmer. The wildflowers in full bloom."

It certainly made me smile from ear to ear…..thanks for sharing this, Ben.

So, a first ride back down to some his old stomping grounds. 

Another first since the accident happened over the weekend.....all three of our children were gone from home, overnight, at the same time, for the first time since last spring (at least). Yes, Michael and I enjoyed some child free time together!! 

Michael saw a new PT on Friday and should be starting some sessions with her soon. He see’s the orthopedic doc on Thursday, and barring anything unforeseen, we should be able to get the needed script from him then, and can get going with this. I have never had to work so hard getting something dealt with as I have this cramping issue with Michael’s shoulders. I am reminded sometimes how much more frustrating adult care is then pediatrics…..and that is sometimes saying an awful lot. I think we finally have something happening though, and will just be happy when it’s a done deal.

Okay…..dinner is waiting for me, so I am going to go eat and then start packing for tomorrow’s admission. As always, thanks for the thoughts and prayers.

WC Day 24: Our Guinea “Pig”

Madi Day 2 after surgery

Two weeks ago, Madison had surgery. As I shared here before, she had developed an abscess in her abdomen, around her g-tube (feeding tube) tract, back in September. Three weeks ago it flared again, for the third time, and this time it developed fistulas (small tracts going from the internal abscess to the surface of the skin). That it was reoccurring, and now producing fistula’s meant we were not actually killing off the infection, just calming it down, and our only resort was to do surgery.

The treatment for fistulas is rather barbaric (at least as far as I am concerned). They use a guide wire to locate the path of the fistula, then cut down to the wire……and then leave it open to heal from the inside out. It’s the only foolproof way to ensure the fistula closes, but ugh on open wounds, especially open wounds right by a g-tube site.

My biggest concerns, in no particular order, were 1. Pain….as much pain as the abscess caused, I was understandably concerned that an open incision was going to hurt. 2. Infection…..specifically staph, as the kids are all colonized with it, and it’s something we fight regularly, and it always involves an open wound. And 3. Healing…..because of Madison’s connective tissue issues, healing can be a challenge and always leaves nasty scars and such. I shared these with our surgeon, not totally sure he was taking it all as seriously as I considered it to be.

I was wrong.  He heard me. 

When the surgeon came to talk to me after the surgery, he shared that with Madison’s special issues in mind, he was trying something new with her. He said it was a product, interestingly enough, made out of pig bladder that was supposed to help healing happen more quickly and he was hopeful it might make a difference for our girl. With that, we were off to our room, where I spent some time trying to figure out what this stuff was. Google “pig bladder wound healing” and there are quite a few articles on it, all of which made it sound pretty stinking promising!! It was originally used on war veterans with wounds that were not healing as they should, and were frequently risking the limbs being salvageable. This “pixie Dust” as one of the soldiers took to calling it, is capable of facilitating the growth of not only skin, but muscle and nerve!! I was kind of excited about the prospect of what this might do for Miss Madison.

The following day I shared with the surgeon that I had read up on this “new” product (it’s actually been around for a little while now) and that I was excited by the prospect. He cautioned that he wasn’t really sure what it was going to be capable of doing, but that he liked the idea of leaving the site alone, and was remaining skeptical on the wound healing part of it till he saw it with his own eyes.

Apparently the company that makes “pixie dust” has been talking to him for some time about trying it, but Madison was the first patient he has had that he thought this might help. As he should have been, he was reserving judgment till he was able to see what it was capable of. With that, I didn’t get my hopes up too high, and we left the hospital with care instructions, and a 6-8 week timeline on healing. We also left with a kid that had essentially no pain at all from the site.

Care instructions really could not have been easier. Twice a day we remove a 3x3 split gauze that’s covered with tagaderm, and then reapply the same. There is no cleaning and no touching of the wound site. There is a thin wound covering that stays in place over the wound and is only removed and replaced when we see the surgeon or his nurse.

At the one week mark, we returned to the surgeon’s office to see how things were going. As soon as our surgeon saw the progress that had already been made, he was clearly impressed and started talking to the rep from the company about some other difficult patients he has. I knew then that it was apparently working better than expected, and was thrilled to hear it!! Looking at the site didn’t do much for me….I did not see it immediately after the surgery, so my ability to compare wasn’t good. But from the doctors response, it was clear a ton of progress had already been made.

What I could see that day made it difficult for me to be able to imagine how this was going to go. The fistula she had went directly into the g-tube tract, so to cut down to it meant we essentially lost one whole side of her g-tube tract. At this first visit, this was still very much the case, so rather than the circle usually there, it looked more like an ice cream cone, with a scoop of ice cream on top. The idea that this was going to somehow heal and leave us with an intact g-tube site was difficult to imagine.

As they did the day of surgery, another application of “pixie dust” was done at this first post surgery visit.

So what is this stuff?? In layman’s terms, it is pig bladder cells (any animal or organ can apparently produce something similar, but pig bladders are apparently cheap, so they are used) that become a matrix that encourages cell growth. It seems to be similar to what we hear is possible with stem cells, and from the reading I have done, it encourages whatever cell growth is needed where it is put. So if it’s muscle, nerves, skin, or all three, these are encouraged to grow where this matrix is introduced. It really is fascinating!!

So today was our second visit to see how things are going.  This time I had something to compare it to, and took a quick look at the picture I had taken last week so I could fully appreciate any progress that had been made. All I can say is WOW!!!!

One short week later she has a clear g-tube tract and there is not even that much healing left to take place going out from the site!!! Things looked so good, we did NOT need to do another application of pixie dust!!

We are TWO weeks out from a surgery that they expected to take 6-8 weeks to heal, and I won’t be shocked if it is almost there by next week. We have had no pain, no infection, and at least at this point, it looks like the healing is going to not only be faster than we could have ever hoped for, but “cleaner” and nicer looking than we could have hoped for!! This stuff really is amazing!!!

And now, our precious daughter will always be known as our guinea pig, or that she has a little piggy in her....LOL

For those that like details:

About MatriStem

MatriStem devices are comprised of naturally-occurring porcine urinary bladder matrix (UBM).  The bladder is harvested and processed to remove the muscle and submucosa tissue layers.  The product is disinfected, packaged, and sterilized via electron beam radiation.  The resulting product is a non-crosslinked, completely resorbable, acellular extracellular matrix scaffold with naturally-occurring collagens, featuring an intact epithelial basement membrane surface and tunica propria surface.

 

MatriStem contains a collection of proteins arranged in a three-dimensional structure not currently available in synthetic materials.  This ECM scaffold technology is recognized by its bimodal surface characteristics.  The intact basement membrane surface is hypothesized to contribute to epithelial and progenitor cell attachment and proliferation.  The lamina propria surface may be conducive for integration into the wound bed and host connective tissues.

 

The product completely incorporates into the surrounding tissue during the healing process and leaves new tissue where scar tissue formation is normally expected.  The result is constructively remodeled, site-specific tissue for a variety of medical procedures.

WC Day 11: Surgery Update

She is comfy

While it was a really (really, really) long day, it could not have gone any better!!

So many people have to come together to make something like this go so smoothly. When several go above and beyond, the comfort it provides my soul is pretty amazing.

Our surgeon heard my concerns about Madison’s poor healing and was able to acquire a relatively new, and very exciting product to use in hopes that it would help. It’s previously been used on much larger wounds, but when he approached his supplier with our situation, they agreed that it would be worth a try. We are all anxious to see how this goes, and will have some idea next week when we see our surgeon again for follow up.

They were able to arrange it so that we had our pain specialist handle anesthesia, meaning we had a familiar face this morning, who knows Madison’s history, and even better yet, came here from our hospital in Houston, so she knows our mito protocol inside and out. It was the easiest part of our morning, and that is not always the case.

Our nurses, in pre-op, recovery, and since we have been on the floor, have been awesome.

Several of our friends came by for a visit, and the noise coming from this room; from laughter, to singing; has been something else much of the day.

My mom saved my butt and was able to get Chance and Abby over here this afternoon for an appointment they needed to make it to, and is at the house helping out on that end until Madi & I can get home and relieve her. We could not do all we do without her!!

Madison was a trooper, as always, and showed no fear going into this.

Then the prayers really kicked in……

The area that needed to be excised was more manageable than we could have hoped for!! From what the surgeon tells me, it is a little larger than a quarter, and filled with the “pixie dust” (new product I referred to earlier), and now we just have to wait for it to heal.

Madison tolerated the anesthesia well. She woke up insanely chatty, and it was adorable!! 

She overall looks pretty good….a little strain on her body is showing, but it’s been very manageable……She got some extra fluids via IV, and that always makes her feel better…..and most remarkable…..

She hasn’t had ANY pain all day.

I don’t get it, but I am NOT complaining.

We should be out of here sometime tomorrow morning, and will be so happy to be home. In the meantime….I need sleep!!!

WC Day 10: Our World…..& Surgery

In an ideal world, I would be sleeping right now. In an ideal world, I would not be busy prepping for Madison to have surgery in the morning, and packing for at least a few days inpatient (in order to ensure we are only there for one). In an ideal world, I would not be behind on my posting challenge here.

Ah, to live in an ideal world.

In our world….

I am up, but am hoping to get an hour or two of sleep before we have to head out.  A 3:15 wake up call comes WAY too early. Thankfully the parent beds at Cooks are actually pretty comfy, so I know I will sleep well tomorrow night.

I am trying to think of everything we need to take with us. Packing our clothes and toiletries is a no-brainer, but trying to make sure I have the medical supplies and equipment, some of which we will need, and some that we probably won’t but I need to have with us to be sure, is less straight forward. Very thankfully, we are not inpatient all that regularly, so I am rusty and worried I am forgetting something.

I have just finished updating summaries so I can make sure I can accurately go over Madison’s medication list, allergies, surgeries, etc and so on when we get there in the morning. Ya know, when I am going to be tired and need all the help I can get.

Included were summaries for Chance & Abby too, because they have an appointment with GI tomorrow. I will already be there, so we might as well keep the appointment!!  Besides, we have some stuff to talk to our favorite doctor about that really shouldn’t wait.

I have driven to Ft. Worth 5 times in the last 7 days, and am headed back in the morning.

No less than 6 different doctors on Madison’s team had to be contacted about the surgery tomorrow. Some with questions, and some to just let them know we would be there in case they are needed.

The call with anesthesiology lasted for almost an hour as we went over her history and I answered all their questions.

At the same time, in our world…..

I am grateful to be on the schedule first thing in the morning, even if it means little sleep and early wake up calls. First cases are rarely delayed; we can avoid fasting issues with Madison that otherwise might be a problem; and all are fresh and ready to go. It is always worth it to go this route for us.

I am insanely grateful that we are so seldom inpatient that I have to really think about what it is we need to take.

I am grateful that getting the kids summaries together and updated doesn’t take much time; and that I am able to accurately share the kid’s information because of them.

I am grateful for my mom, and all the help she gives us. If it were not for her, Chance & Abby would not be able to make it to their appointment tomorrow. She will be taking care of the crew at home for me, and I am so thankful!!

I am grateful for the doctors we were seeing the first three times we made the trek to Ft. Worth this last week; and that the other two times were so Chance and I could attend our advisory council meetings, and give back to this hospital that means so much to us.

I am grateful for all 6 of those doctors offices I called today. Each of them took the time to make sure we had what was needed, and to assure me they are there for us.

I am grateful for how thorough anesthesiology was today, and that they take the time to make sure they are safely caring for my child.

Our world…….it may not be “ideal”, but there is still an awful lot to be grateful for!!

Madison is on the schedule for surgery at 7:00am. I am off to finish up and get some sleep. I will update here tomorrow. Love & hugs to all!!

Madi Update

Madi meeting R5

We saw the surgeon, Dr. M, this afternoon and I was reminded how much I like him.  He did Abby & Chance’s Nissen Fundoplications and g-tube placements back in 2009, and it is clear why he is so respected by the other doctors at Cooks, and the parents I know who use him. He’s gentle with the kids, very kind, and explains things well. And he takes the bull by the horns and makes plans, even if they are not ideal. But then, when is it ever ideal to be discussing surgery on your child, right?

Dr. M took a look at things, shared that he had seen the pictures we shared with our GI, Dr. O, and had a pretty good idea what we are dealing with.  It’s something he has seen and worked on a couple of other times, which with as many surgeries he does, says a lot about how rare this kind of thing is. At least he has seen it, worked on it, and has apparently been successful repairing it. That gives me some peace.

So, his feeling is that Madison has developed fistula’s coming from somewhere internally to the skin around her g-tube site. Best case scenario, these fistulas are shallow (not going deeply), maybe going from the g-tube tract to the external skin, but it’s impossible to know till he gets in there. At the moment, he was able to clearly see 4 of them, but there could be more down inside the g-tube tract that we cannot see.

I am hoping I can explain the plan without being too graphic…..forgive me ahead of time if I fail, or if your not good about these kinds of things, perhaps jump past this next paragraph!!

Closing fistulas can be a real challenge, and there is really only one remedy for them, and that is to get them to heal from the inside out. What this means for our girl is that, while under anesthesia, they will thread wires into the fistulas to figure out where they go. Once they have the path figured out, they will cut down to the wire, wherever it may be, clean the infection out, and then leave these incisions open to heal from the inside out, however long that takes. Today’s count was four, so at this moment we are preparing for 4 open incisions that we have to try and keep healthy and get healed. They will change her feeding tube (a button type) out for a PEG (long tube) so we can avoid messing with the area of the incisions as much as possible, and hopefully keep the area cleaner.

Madison is handling it all like the rock star she is.

I, on the other hand, am feeling a little stressed about how we keep the staph monster away, and whether her connective tissue issues will impede the healing we need to take place, as quickly as possible. I have no doubt this is what needs to be done, but I would be lying if I said I wasn’t dreading it. Madi and I are both relieved to hear that he feels like he can save her g-tube site, and that while Madison presents him with some unique challenges, this remedy has worked in the past.

We will hear from Dr. M’s scheduler Monday, but he said this is not a long surgery, so it shouldn’t take long to get us on his schedule. I am actually hoping we get it done next week, but it could be the following one. We will be inpatient for at least one night, but we will dictate our stay on how Madison is doing overall.

In other news, the culture is still not really growing anything, so we are NOT on a new antibiotic. I am keeping the faith that this will not backfire, but we will watch her closely through the weekend, and perhaps, if something is going to grow, we will have more information on Monday. I didn’t hear anything on the lab work, so I am assuming all looked okay, but will get more definitive information next week.

Madi is maybe a little punier than usual, but since the pain eased as the abscess drained, she has looked so much better. We are headed out early tomorrow morning for the Walk for Wishes and are looking forward to seeing our MAW family!!

Thank you all for the continued prayers!!

WC Day 4: “Accomplished!!” & A Madi Update

 A few weeks back, Madison and I were talking.  Actually, I was sitting on the couch looking at my phone and sighed out loud.  When Madi asked me what was wrong, I shared that I wanted to just sit for a few minutes and veg, but was feeling guilty because I had so much I needed to do.

As we talked, I started ticking off all that I had gotten done that day and the day before. I had made some calls, gotten some laundry done, and as I continued Madison started pumping her fist in the air as she yelled “ACCOMPLISHED!!” after each one I said. By the end of my list, I was doing the fist pump too, and actually feeling a little better about taking the break!!

Granted, we then took it to the silly…..I ate breakfast – ACCOMPLISHED!! I took a shower – ACCOMPLISHED!! Etc and so on. If only it was as silly as it sounds….some days I really do feel like it’s a major accomplishment when I manage to get some of these things done!!

What I came away with though, beyond the realization that sometimes even the small things are big accomplishments, is that I really do feel better, even if I am only just thinking “ACCOMPLISHED!!” in my head. Sometimes I am getting more done than I even realize…..and sometimes I am not, but need to keep cheering myself on.

It really is awesome…..you should try it!!

Thanks for the prayers for today’s appointment for Madison.  We saw our wonderful GI doctor this afternoon and have a plan of sorts.

He got to see the much improved abscess, that is honestly still pretty gnarly. His feeling is that we have multiple “tracts” that are likely connecting with the g-tube tract and it’s a mess. He’s again concerned we may lose this g-tube site altogether. However, as I shared with him, on our last visit with surgery we were told they almost never lose sites and can do a lot to maintain what we have. We shall see. He took some pictures, and I shared the ones I had taken a few days ago, and he was off to talk with our favorite surgeon to see if we could get her in soon.

We also discussed continuing antibiotic coverage since she is still clearly infected even after a 7 day course of Keflex. Since we got the culture yesterday, we are going to wait for it to grow and get sensitivities before starting our next round….hopefully tomorrow. Hate that we are running into a weekend with this!! Prayers that we get the information needed by tomorrow and can get her back on something ASAP is appreciated.

Finally, he ordered some labs to see if there was any sign that the infection has become systemic at all. I won’t be surprised one way or the other…..in a child that just doesn’t run fevers anymore, it’s super hard to know. We should have those results by Monday and see where we go from there.

Dr. O jumped right on things, and by the time we made it home I had a message to contact surgery to get her an appointment. I wasn’t sure how long it might take, so was pleasantly surprised when they said Dr. M can see her tomorrow afternoon!!

Ultimately, it appears that surgery will definitely happen, question is whether it will be a total closure of this g-tube site and creating a new one, or somehow getting the area around this one cleared up. Knowing our surgeon, Dr. M, I suspect we will have a plan tomorrow before we leave his office.

Not feeling it totally, but I am going to say it anyway since it might make me feel better about it all…….

ACCOMPLISHED!!

(with a less than enthusiastic fist pump)

Stay tuned for the next installment in the g-tube saga……..

WC Day 3: Infection and 50,000

Phew....just going to get this in under the wire!!

It’s been a long, dreary, cold day.  Where did spring go? Oh yeah, that’s right, we will hit 80 this weekend. Gotta love Texas weather.

Madison has another abscess around her g-tube tract…her third since September. Not good…not good at all. We spent hours with the pediatrician yesterday. That visit resulted in an urgent call to our GI by our ped, in part because not only was there an ugly abscess, but our girl wasn’t looking good in general. Our ped is not an alarmist and has a lot of medically complex kids, so when she gets concerned, well, I do too.

By this morning I was being asked to bring Madi to Cooks for an ultrasound and possible surgery to drain the abscess, and had started working in that direction before waking her.  When I did, thankfully, the abscess was…..how do I say this delicately….it was taking care of itself, if you will. With that, another call was made, knowing the ultrasound would be less than revealing, and we were not going to need “help” with draining the abscess after all.  Madi LOOKED better too, so I was feeling a little less concerned than I had been.

A little.

Problem is…she has already been on antibiotics for 6 days and while on them, the abscess continued to grow. We got to where we were yesterday while ON the antibiotics. All possible indications that maybe the antibiotic chosen wasn’t the best one for the infection…..or worse, that perhaps she is becoming resistant to this particular one (our options are already limited because of the mitochondrial disease)…..or (not sure if this is worse or not) there is a chance that the abscess is walled off enough that the oral antibiotics are having a hard time getting to the infection. Regardless of all that, she is due to be done with this course of antibiotics tomorrow and we have obviously not cleared the infection yet. Yes, it’s good that the abscess is draining on its own, but it’s not “all better” quite yet, and I am not sure stopping the antibiotics now is the best thing.

With all of that, we went over today and had a culture of the area done. While not ideal to do while on antibiotics, it might give us some useful information.  It’s probably staph….the kids are all colonized…..but maybe not. We might be able to see if it’s responsive to what she is on, or if there is something more effective.

Tomorrow we will head back over again to see our GI and talk things over. At this point I suspect we need to continue antibiotics for at least a few more days,  but we also need to try and determine why this keeps happening and how we might avoid it in the future. Clearly the infections take a toll on her, so avoiding ones that we can kind of see are going to happen again, well, those need some special attention. Praying for some wisdom for all involved!!

In other news……we officially hit 50,000 hits sometime today!! Thanks to all for reading and hanging in there with me!!

Backing Up – Houston Day 3-5

Considering out next trip to Houston is fast approaching, sharing the rest of the last trip is becoming more imperative. My oh my, where DOES the time go!!  It feels as though, like here, I am several weeks behind in certain aspects of my life, while other parts are current, and it all makes for a bit of discombobulation, so bear with me.

When I last shared, we had gotten to Tuesday night and were headed to Cardiology with Madison and Pulmonology with all three the following day.  I will finish up the medical side of our trip down in this post, but want to do another post about the fun, wonderful things that happened while we were there too and will get that posted very soon.

Wednesday morning Madison had her ECHO and EKG and we had the privilege of seeing our cardiologist to go over Miss Moo’s stuff.  The lead up to a visit with this specialist is always a bit fraught with concern, just because it’s so hard to know what we will find to be going on.  The stress, as we continue getting positive test results, is lessening, but I am not real sure it will ever really go away.  The reality is, too many of Madison’s issues, and the associated symptoms, overlap, and heart function can change on a dime, sometimes silently.  Personally, I prefer issues that I can clearly define and have a pretty good idea how tests are going to come out.  But alas, that’s not the case with this system and I am slowly but surely learning to accept that.

Madison’s ECHO and EKG looked great!!  Pretty sure my sigh of relief was audible…LOL.

While the appointment from the testing/result end of things is something I don’t really look forward to, meeting with Dr. M is always informative and reassuring, and this one was no different.  I love how Dr. M thinks outside the box and doesn’t stop at “just” heart stuff….she wants to help us understand whatever might be going on.  Unfortunately, with Madison, there always seems to be something “going on” and Dr. M is incredibly tuned into that and provides some further thinking on what is happening and how we might address it.  Her insight is invaluable.  Absolutely invaluable.

With the stabilization we have seen in Madison’s heart issues, the possibility that she might have had Myocarditis, or an infection in the heart, at the time of her Dilated Cardiomyopathy diagnosis is gaining some footing.  Unfortunately, there is just no way to know, and it still doesn’t tell us what her long term outcome with this will be, but provides just a little more hope that she might improve and someday might even be cardiac medication free.  We can hope at least, and maybe with just a little more zeal then we felt confident in having before. 

We went over all of Madison’s other issues happening, most specifically the increase in her autonomic complications, and I learned from Dr. M that in part, it’s the cardiac medications (ACE inhibitor and Beta Blocker) that are contributing to the autonomic issues.  It turns out that these two medications effectively block some of the bodies normal responses to the stress infections impose on the body, so in a sense, it could be contributing to the increase in the autonomic symptoms she is experiencing.  With the continued stabilization in her heart numbers, we are trying a reduction in her ACE inhibitor, with removal of the Beta Blocker when she is in a crises and we are seeing the low blood pressures.  It’s worth a try and might make a difference in her responses to the infections.  It also allows us the chance to see how her heart handles the reduction of the medications, something that will eventually have to happen if the thought of getting off them all together really enters the picture.

Additionally, she would like to add Paxil into Madison’s medication regime.  They have found that for some of her autonomic kids, this medication can provide an increase in energy levels during the day.  While I am a bit loathe to add something new in, the thought that we might be able to help with Madison’s energy levels is awfully tempting.  I am waiting though for now.  We have some other changes in the works at the moment, and I really need to do things one at a time so we can see what’s helping and what is not.  We have the script and will give the Paxil a try at some point, just not quite yet.

Finally, we have an event recorder for the next month, in an attempt to try and catch one of the times when Madi feels her heart is racing, and we drew labs to check on heart numbers and a few other things.  The labs all looked good, but her CPK is a bit elevated, no doubt because of all the crud she has been fighting lately.

Wednesday afternoon, the kids and I headed over to see our favorite pulmonologist/sleep doctor, Dr. J.  Again, another brilliant clinician who happens to also have a fantastic bedside manner and a desire to help figure out what may or may not help the kids.  In some ways, this appointment was actually pretty simple and straight forward…..emotionally for me though, not so much.  I knew that my reluctance to get things in place to get night time oxygen started had reached its end and I needed to get on board for the kids sake.  In that vein, it was likely the very best time Dr. J could have chosen to share that she really felt Abby needed it too.  Starting two or three at the same time, suddenly didn’t seem all that different.

How did we get to this place?  Sleep studies, actually happening since last November, have been showing us that all three kids are dropping their oxygen saturations at night, particularly in REM sleep, to low enough numbers that it is concerning.  Add to this that they are seeing AMAZING results in mito kids with supplemental oxygen, and that we need some improvement in energy levels in general in all three, and we have the perfect mix of good reason to give this a chance.  Chance and Abby will be on nasal canula’s, while we will pipe it in through Madison’s BIPAP mask, all at night while they are sleeping.  Madison may try some supplemental oxygen during the day too, but has made it clear she is not keen on the idea of anyone seeing her with it on, so it would be for here at home and while getting from point A to B if/when we give it a try.

This really is a GOOD thing……it could make a real, tangible difference for them….but it’s one “new normal” I am definitely needing to adjust too….seemingly more than the kids even (which is really a good thing). 

Early Thursday morning Chance and I headed over to TCH for a Resting Metabolic Rate (RMR) test.  This is a test I have heard about, and is being used by one of the mito specialists in Atlanta to aid in diagnosis, but had not realized was available to us.  Because of Chance’s weight loss it was ordered to see if it would show whether his metabolic rate was higher than normal providing some explanation for the much higher than normal calorie intake needed at this point.  It was an interesting and benign test that provided us with some useful information!!  I like those kind!!! 

Later that day we headed over to see our motility GI’s NP to go over Chance’s results, check where his weight was sitting, and talk about Abby for the first time and see what we might could do with her and her finicky belly.  As always, C was awesome, easy to talk to, and was able to give us a plan which always makes these things a little more tolerable.

The RMR did in fact show that Chance is hypermetabolic which helps explain the increased need for calories.  Why that’s the case, and why now and not before is unknown.  Further, this is the first time they have done this test through the GI department, so we didn’t really have any other kids, much less mito kids, to compare to.  It’s information, from an easy test to do, so it was worthwhile in that respect, but I am hopeful they will perhaps start doing them more and have some information to share about it in the future.  I am also hoping to find someone that has had it done during their workup in Atlanta that might know more how it’s being used there.

Thankfully, Chance’s weight was holding steady, so the protocol we have in place right now seems to be working!!  

We left with some new ideas and plans for Abby too, so all in all, a good appointment with some options left to try before we contemplate attempting the Cisapride study.  We could not get started on it till after camp in August anyway, so for the time till then we have some other things to try and that’s always a good thing.

And that, my friends, concludes the medical portion of our final days in Houston!!!  Next up….FUN we had while there!!

Inpatient

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

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.