WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Saturday, December 31, 2011

New Year's Eve- Goodbye 2011~!

So a rough year. Yet, a really good one.

Our family saw our 18 year old graduate from the U of H with her BA in Anthropology. We watched Abby somehow manage a full time load at College with a perfect 4.0. We have made a ton of new friends.

The bad- the Mito label. A huge relief that we now understand why she has been sick all her life, but after the relief wore off, the fear set in. We saw Abby really start to struggle this past spring/summer. Between full time at College and a zillion high stress Dr. appointments and a muscle biopsy and kidney biopsy we thought a term at home in PJ's and a pile of movies would restore her and she would bounce back. She hasn't bounced back yet, and now is struggling with her GI. Yet, I still believe the potential for a bounce is there- after all, without even knowing what was wrong with her all these years we followed our instincts despite often alienating ourselves in the process. It worked though. There has to be the perfect mix of food, supplements, rest that will settle her down- that will be the focus of 2012.

Despite our terror at the potential that Abby will get sicker, we made lemonade out of our lemons. For years, I have admitted to be eccentric, a little nutty really and a flavor at times that you have to learn to appreciate. I have tried to hide my unique flavor to blend in for years- this year, I feel like I am okay with who I am. I was right to push all these years to find a diagnosis for Abby- despite what seems like a zillion Drs. rolling their eyes,denying, referring Abby on to someone else and surely some very interesting comments about us in her medical records- I was right. They with all their experience and education were wrong. Abby said for years she thought no one besides us would ever believe just how miserable she was.. Can you imagine being a little kid struggling to just crawl out of bed each day, but Drs. never believing you? She too feels more centered- like the biggest battle in the war is over and since she won it makes facing the rest of the war easier.. Our daughter Sara has had her own struggles, but this year she too has found herself connecting more with us, appreciating that between the 4 of us we can conquer anything. Derek amazes me daily. He can rolling with the punchs and swim upstream all at the same time. His patience with a houseful of women while maintaining his status as the only guy in the house is quite the accomplishment. He is tireless with all of us.

I could never say Abby's mito journey is a blessing in disguise, but I can say that through the Mito journey each of us values the other more- we each marvel at the strength we find in each other. If one doesn't have enough energy, there are 3 others who will help carry them. My little family has indulged me in repairing vintage sewing machines, freecycling, 3 months of a hideous farmville addiction and now Shrinky dinks. When so many Drs. thought Abby was just exaggerating, or I was simply nuts, we found strength in our absolute belief and faith in one another.

With or without Mito Abby is something very very special. She never judges, she is always that one person everyone wants on a project or team- she just makes everyone feel charmed. Quiet and strong. Somehow no matter how terrible she feels, she rarely complains- and she always finds a reason to smile. That type of inner strength is going to help her on this Mito Journey, and through her the rest of us have begun to appreciate ourselves a lot more.

May 2012 bring our family even closer and stronger.


FAMILY.

Tuesday, December 27, 2011

Not just the Dr.s, but other parents...

This is a touchy subject, but does anyone else notice that parents tend to "judge" nearly as much as the Drs?


I hate to say it, but on a number of groups and boards I have seen some heavy judgement. I am the first to admit that I am guilty.

Mito entrapes a family into a odd lifestyle that we tend to become very singular and unique in our parenting. I know many of us have decided to home school, sometimes for health reasons, sometimes because Public Schools often do not recognize Mito as a disease(my daughter had a High School teacher call her a faker!). Sometimes because the child with Mito has such a busy Dr. schedule it would be impossible for them to do well in a traditional school. Some families chose to send their children to a traditional school to help keep their childhood's as normal as possible(we both home schooled and done public school)

For example- Abby's biggest symptom of her disease that we struggle with is fatigue. We avoid most social functions. We avoid most family functions, and we do everything we can to avoid Dr. appointments. I see the Dr. visits as high stress, huge exposure to germs, and so far, though we found caring Drs. they don't have any treatments or suggestions to improve her life- it is usually about "tracking" and "monitoring" .. etc. So why go unless we absolutely must? Dr. Kendall said something that reassured me she is the right Mito Dr. for Abby. Abby had expressed to Dr. Kendall that she is terrified that Mito could affect her cognitive function and asked if they could do tests- Dr. Kendall totally understood Abby's fears, but said to think about cancer- is it possible that Abby's Dad could develop cancer in the future? Of course, but if there are no signs or symptoms would we start testing? No.

So here is our judgement- I notice that lots of kids have tons of "baseline" appointments. They go and have each body system tested and monitored at least yearly, even if there is no evidence of any issue. Or the issues are quite minor and can be dealt with by a primary care dr.- I wonder why in the world would these parents drag their kids appointment to appointment- I mean I have heard of 15 appointments in one week! Heck, Abby hasn't had to energy to shower two days in a row in months- It would certainly trigger progression of her disease to haul her around! I found myself judging them- why would they risk their children's health this way? Don't they recognize that using their child's energy that way is leaving them worn out and susceptible to every germ?

I hear you screaming at me from your monitor to mine! I did catch myself making this judgment and had to force myself to STOP! It took a long time but I made myself look at my family from the eyes and shoes of those families who have frequent dr. visits. I suspect they judge us too! I think they probably think I am a bit neglectful for not being more agressive. They probably think that if the Dr. says to do yearly followup that when we don't we are leaving Abby at risk. They probably think these specialists can catch a problem before it becomes out of control, which if they can nip an issue in the bud, they can avoid more crashes in energy. I suspect also, that a lot of kids/teens don't have the SAME Mito Abby has- I can totally get why Dr.s judge- because the symptom list is lengthy very complex and often invisible. Where Abby can barely find the energy to shower and dress, the next patient with Mito may have no problem with energy unless they have a cold, or their blood sugar is off.. Some Mito patients just deal with massive and chronic pain... the more I read the more bewildering the combination of symptoms are- not even the best Mito Specialist has seen it all.

I suffer from a bad back- I hear you all nodding in agreement remembering spraining your back, or that ache in the morning, but I have a really bad back- all the disks have been herniated, I have bone spurs pushing in on my cord, I have bone on bone, nerve entrapment, I have tumors causing me pain. You have two choices when you have this many spine issues- either start doing surgery or learn to cope. Most of my friends with this much wrong with their backs will do surgery when their Dr. says they should- and often it does relieve them of some pain. But spine surgery with my level of issues means in 5-10 years(or less) the surgery correction will start to cause it's own issues- so I would be having surgery to correct the surgery and the spine.. If I get to the point that I am unable to pee or walk, I will have surgery, but until then I deal with it. That is my choice. I know I have friends that either think I am a wimp because I complain but think I must be exaggerating because if it was that bad, wouldn't I have already had surgery? and I have judged some of them, because I think they are wimps or too trusting of a surgeon because don't they realize that once you have one spine surgery you may get a reprieve for awhile, but sooner or later you will need another surgery to fix the issues the first surgery caused??

Mito is the same as my back- it is IMPOSSIBLE to make assumptions, to even begin to make judgements on someone else's Mito journey.

The one thing I have HATED the most with Abby's mito journey is friends,family and Dr.s assuming they know more then Abby or I about how Abby's body is functioning, yet I have caught myself judging other Mito families. My New Year's resolution is to learn to listen without judgment. No easy task, but if I can take the time to remember what it feels to be ignored, not taken seriously, or judged, I think I can improve.

Monday, December 26, 2011

Wheel Chairs- Where do you find the right one?


In our house we went from Abby saying absolutely no to any type of wheelchair, to her begging me to find her one.

So if you need a chair in a hurry where the heck do you find one?

If your child is getting care in a clinic you may have access to a PT/Wheelchair clinic. From what I have heard they know a lot about chairs and how to buy one in your community. They have even have some lenders for you to try, or to use while you start your journey...


I have also heard that the MDA clinics have wheelchairs to lend and a fitting clinic where they help you figure out which chair you need.

Mitoaction.org has some different resources listed and the general process.

How we found Abby's chair is that a week after we got the prescription from her Dr. we saw that an Abilities Expo was in town. From the advertising this seemed like a good place to start. It was terrific! They had tons of venders with many different styles of chairs for all needs. They also had cars/vans that had been modified for power wheelchairs.

If we could have, we would have gone with a modified manual chair- something that could be slipped into our trunk. But, at 16 Abby doesn't want to be pushed, and she just doesn't have the go-go juice to push herself so we noted the various powerchairs while at the Abilities Expo. We gathered business cards and were pretty forward in stopping folks who were using chairs to ask them what they thought was the best one- in two hours I had more information and a much better understanding of the world of wheelchairs.

We contacted the Permobil representative in our area to ask him who they had worked with as far as dealers goes and he was great and knew a company and a contact in the company that he had worked with and we set an appointment.

We worked with a PT at the wheelchair vendor. The rep from Permobil met us there too. They fitted the chair(they measure every inch and note different special needs for the chairs). Then, the waiting began. For us, the longest wait involved the insurance. From start to finish it was a 3 month process which from talking to other folks seems pretty average. They brought the wheelchair right to the house for the final fit.

Now- we need to buy a car/van to haul it. Not going to be cheap! I am sooooo not a fan of minivans, but it seems that is the best/most affordable choice.

Over this process I would have been really lost if I did not have my support group online friends- their tips ensured a smooth process.

A few I really used-
1) Not only did I take the prescription to the first wheelchair appointment, but Abby's medical records. I was lucky enough that Dr. Kendall had written a terrific summary of Abby's medical history and diagnosis- the wheelchair company was able to use that summary for proper codes and to submit with their billing and the prescription- I suspect that helped the process a lot.
2) We were warned to know about which wheel chairs we were interested in before approaching a wheelchair company- like car dealerships, they tend to favor certain brands and you may to ask to see more then the brands they carry.
3)Documentation.
4)patience.
5)There seem to be a few different options the insurance won't pay for, don't be surprised if some of the options are denied for the chair. Our insurance won't pay for the lift(chair goes tall enough to get into the kitchen cabinets with ease)for anyone, so we paid out of pocket for that option, Abby isn't getting out of doing dishes that easily!!! LOL A set of handles on the back of the chair were not covered and we opted to not buy them- we might regret it, but we can have them added later if needed.
6) Try to think about how long the model you have picked will serve the needs. Will it work for school? In 2 or 3 years if their physical needs have grown, can this chair be modified to met those needs? Abby chair was hugely expensive, I don't think our insurance is going to approve another for quite a few years without a very good argument. We tried to forecast for the next 5 years- easier since Abby is done growing.
People often wonder, how do you know when you need a chair? I think that is so personal. Had we introduced a chair earlier on(had we known it was an "energy" disorder)I think Abby would have been more accepting of it, and we may have been able to hit the zoo, parks etc more often. However, Abby was quite adamant for many years that no way did she want one. So, even though her life became more limited we tried to respect her wishes. About 2 years ago, she developed an interest in the Mall but struggled to get through the parking lot let alone walk the mall- she asked for a chair at that point. She has had a couple days around the house where her "wobbly" legs have led her to use her chair, but mostly it will be for trips outside the house.

When the wheel chair was delivered, it was a day of celebration here! She was so ready to have a tool that let her do the things she missed doing, that the chair is very near having a name :-) Had we brought the chair in last year, she would have seen it as her nemesis instead of a spare set of legs. You will know when it is time.

Saturday, December 24, 2011

Shrinky Dink Mito Awareness-


Not sure if it was cabin fever or the holidays but I decided I was going to make something out of Shrinky Dinks-found Shrinky Dink sheets that you can put in the printer- a few trial and errors and burnt finger tips and I put together a little necklace charm-

Merry Christmas!!

I know I really need to work on the layout of this blog, but it seems like I just don't have the time.(or the talent :-)

We are determined to have a wonderful Christmas this year..We started the year off by cutting out 4 foot by 4 foot letters to spell Merry Christmas!(40 feet of bright red and lights across the yard), I think we decided if we embraced the holiday 100 percent that this would be good one! So far so good :-) We went to "cash" Christmas a year ago, with teens it really was what they wanted. So this year I deposited the cash and still bought gifts! Too many gifts!! I did it purely for my own need. Something about the panic of finding just the right gift, hiding them, wrapping them and spoiling my girls that is simply part of my identity as Mom. I baked cookies, and plugged in holiday air fresheners.. and somehow doing all of that does make is seem more like Christmas!

I am delighted that Abby has had a couple good days of grazing. It has driven me insane watching her struggle with food this last couple months. I cannot imagine weeks of my stomach in terrible pain every time I ate anything. She looked pretty good yesterday. We will see how she feels when she wakes today, it is so day to day around here.

A year ago we still did not know what was wrong with Abby, in the spring is when they found the Mitochondrial Depletion and kidney disease. Though her diagnosis of myopathy has been with her since birth, we were okay with that- a plain old congenital myopathy isn't progressive. This last few months we have begun to accept that this is likely to get worse, but the question is, how fast? There isn't an answer. I am grateful we finally found Drs. who listened. I am grateful that after 23 years my hubby and I love each other far deeper then we ever thought possible. I am grateful my oldest graduated from college. I am most grateful that Abby is doing really well still.

Living life by the day, and today is going to be Great!
Merry Christmas!

Thursday, December 22, 2011

You are not alone- bad Dr. experiences happen.

In a world now driven by reputation and money, we have left the human element on the wayside.


Our daughter saw Drs. all over the Country for 15 years before finding Drs. who listened. I suspect they listened because clinical evidence was significant and they could not brush us off as over protective parents(or I am sure some of our drs. are convinced I am a little nuts!) any longer.

Most days I can step back and appreciate the difficult decisions Drs. are forced to make in the world of medicine today. Then I have days like today where I am frustrated. I know that just because Abby's medical needs have finally been acknowledged doesn't mean there are hundreds more like us who are getting brushed off by their Drs. as we speak.

The nightmare stories I have heard from parents. The agony they have been in for their children- Mom's do have radar- we do know when there is something wrong.

How many appointments I came home and cried. From my limited view in the world I could only assume they either thought we we were nuts, or did not like us- and yet, how could they deny medical care to my child based on their personal view of me?

For example- we are in Houston. One of the biggest medical centers in the Country. Guess what? We have 1 Mito/metabolic specialist. Thats right, the 4th largest city in the Country and we have 1 Dr. that specializes in a disease that will strike 1 in 4000 . Insane! Not only is she booked to her eyeballs, but I suspect her office must triage. Sorry, but as a parent I am not willing to have my kids medical needs put on hold for months and months. We pay a mint for our insurance, we have filed medical bankruptcy, foreclosed, moved all over the Country trying to find a climate that agrees with her- I am NOT waiting 4 months for basic blood results that take 2 weeks. I understand this Mito specialist see's patients from all over the Country- which of course means those of us in Houston that need her brand of care are added to a growing list. Those of us with enough gas money are forced to go to other states for medical care- really- in the 4th largest city in the Country and we have to pack and see other drs. in other states??? The kicker is, we now have the internet, we compare notes, we know that certain patients receive a higher level of care or lesser. We are now globally connected and expect some level of equality when it comes to medical care- but sadly, many many patients feel ostracized, alienated, we actually begin to doubt our sanity. Yet, the same organizations that teach these Drs. and set up these organizations tell us we are our children's best advocate- tell me how that is supposed to work when they ignore parents?

At a deeper level it really leaves the Mito community divided. There are those of us who have children with Mito or other metabolic diseases who cannot get into see this Dr. or have not had a good experience(aka bad fit -personality?) and we all have to pack up and go to Arkansas, LA, Atlanta, Seattle, Boston.. You would be shocked how many of us have been forced to pack and go. Then, the flood of patients from other states roll in for their appointments with this Dr. Now, try to run a support group locally, can you imagine? Of course the 1 mito dr. in town is likely active with this group- since we aren't this Dr.s patients we don't feel comfortable reaching out for support. I have found that most parents that have been through what we have been through develop blind faith in the Dr. that finally listens, we are guilty of doing the same. Unfortunately, many are leery of those who aren't as happy- understandably. The insane part is, our daughter is probably being seen by the Dr. that lives next door to them, and they see the Dr. that lives next door to us- many states away. An already insanely complicated disease and we add turf wars to it.

I could totally go into a rant about how many Dr.s don't believe that Mito exists- many newly out of Med school(who is teaching these Drs?)are the ones most likely to argue that Mito only has one face.

Last year, CPS, Texas Childrens and the local Mito specialist rocked the worlds of all the families of Mito kids locally- Newspaper articles are still posted all over the net.. CPS decided that some sick kids could not have Mito, took them away. Now, I don't know who is to blame, or which Drs. are idiots to think that Mito did not exist for these patients- but what it did was tell all of our families that Houston is bad bad place to find medical care if your kid doesn't have something very common. Again, this type of BS in the 4th largest city in the US, and with one of the biggest Medical Centers and a slew of Medical schools? Do you blame me if I don't trust Drs any longer?


In closing this rant, I don't want to be part of the problem, I want these hospitals, medical schools, organizations to listen to us- the parents who at the end of the day are the caretakers of these children. I would love to be a fly on the wall while they discuss their opinion of me or my child- maybe it would help me grow into a better advocate. We recently saw a new Neurologist- and bless him, he was a trooper! My daughter calls the first appointment "Mom's data dump". I cannot help myself..my mouth opens and it ALL pours out! 15 years of data.. highlights, lowlights, symptoms.. it is a furious river and it used to embarrass my daughter and husband- they would plead with me before appointments, we would even role play trying desperately to break me of this habit that seems to drown even the most patient Dr. This appointment though, my daughter just smiled and said, he must be a good Dr. if he can live through it. It's true- the Dr.s that have helped Abby the most have weathered the data dump and recognized that despite my lack of ability to articulate in a more civilized, organized, educated manner that I am just a scared Mom trying my hardest to advocate for my daughter- and they don't hold me and my unorthodox approach against Abby the patient.

Finally- I don't doubt our local Mito specialist is good- this Dr. has worked miracles for many families- but I cannot help but be just a tiny jealous that our daughter is not in their club.

So we drive and fly- and have found even better care. I dream of a "real" Mito /neuromuscular clinic that is able and willing to help all of us, equally.
 
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