Bad Days

I am having a hard time the past couple of days with how things are for Megan. There were a bunch of videos that had become damaged in my laptop and I could not recover. I had searched for ways to recover them and could not. I spent hours on the phone with Flip support - you name it. They were gone. Somehow they amazingly reappeared and I sat and viewed them. It was so painful to watch video of Megan up to Jan 09 and then look at her now - how could this have happened? When did she deteriorate to this point. It happened in front of my eyes and somehow it slipped right past me, or I have been too consumed to fully see it. I dont know but it hurts. I want her to hug me and cuddle me and she cant even do that anymore - not with this monstrosity coming out of her throat with all the tubes. I am not big on the boo-hoo card but sometimes reality smacks you right between the eyes and it is a jolt to the system. I guess that is what I feel. I am also so worn out from all the people looking for information from me - I barely have time to shower each day. How do I explain that to people without them thinking I am being over-dramatic or looking for sympathy? I want to stop answering the phone.

Loss of a child with Mito

This is straight off the blog from another parent that has two kids, one with Mito Encephelopathy and one with Autism. This literally took the breath out of my body when I read it. The pain I felt for this family was unreal. I am still crying. Please pray for this family. Thanks for posting this Colleen.

Today my heart is breaking for one of the familys that I have been following the past year. They had two little girls and expecting a third. Their little one Marie had a type of mito, called Leighs disease. I have been following their joys and struggles. Yesterday I witnessed both of these. Thursday they welcomed a new baby girl into their family, Sarah. Sarah met her big sisters that night. Sadly Friday morning, Marie made her journey home, carried by Jesus. She passed away in her sleep. My heart is just aching for them. Please send some prayers for their family!
created with love by Colleen at 8/29/2009 07:58:00 AM

Health Care

This is an email that Pat sent in response to something he received. I thought it was something worth sharing. Feel free to do the same if you like.

The health care issues at hand have gotten convoluted. We should not get so bogged down in the finger pointing, but focus on simplicity. Just as this country was founded and has evolved into the greatest in the world everyone has actually gotten too far ahead of themselves. Earning, accountability, repercussions and risk have been left to the way side as merely expected actions. In turn, those that take these actions, abide by the rules, and are productive in our society carry this burden everyday to provide for those that are less fortunate and those that do nothing. It is horrible that there are individuals that know someone will provide for them and they think it is their right of passage to get a hand out. I am all for helping those that have fallen on hard times, disabled, retired, etc., but to keep enabling our society is a crime in itself. This is exactly where this health care reform is headed. It’s just down right scary. In my specific situation with my daughter it is perplexing that my government thinks it’s okay for my wife to loose sleep, be a full-time caregiver & nurse, surrender time with her other children, become sequestered to the house, socially reclusive with our other children’s education and activities, a shower and brushing her teeth before noon is a luxury, pay a private caregiver to make doctor visits, and that a visit to the emergency room with Megan is considered a date for us. This is all because my income doesn’t make my daughter quality for the benefits I work so hard to provide others. Why are those that qualify for benefits any better than my wife and I? It’s not okay for them to loose sleep (so give them a nurse), miss spending time with their other children (so give them a nurse), go shopping (so give them a nurse), need to be hospitalized (so provide them insurance, no payment necessary, no haggling with the insurance company) or quit their job (so provide them funding and they don’t have to work), but it is expected of us? It is absolutely wrong that we are being treated like this when we are working to support these other folks that “qualify”. It’s been an adage within our society for many years that it’s more financially rewarding to stay home and collect a check than to get a job. It’s time for the party to be over. Our founding fathers would turn over in their grave. If I am correct the “us” makes up about 90% of the population. It’s pretty simple. When we colonized and built this country everyone worked in some capacity. If they didn’t work, then they starved. No one starved, because they knew they had to work; either with everyone or on their own. There were no hand outs and it was frowned upon not to be a productive individual. Why is today any different? I have a problem with giving, providing and rewarding those that do not contribute and penalizing those that do contribute everyday, every hour and every minute. My particular situation is plainly a text book example of why our system does not work. My government has failed me. My daughter is broken. It is not her fault, nor mine. If she could choose I guarantee she would like to be able to walk, talk, hear, see and be totally cognitive of her surroundings to enable her to excel in society. Instead, she will never run on a playground, drink from a cup, eat at the dinner table, say a prayer, ride a bike, be a cheerleader, read a book, graduate, drive a car, work, or walk down the aisle with me by her side. This is the question, “If we cannot provide the necessities to the producers of this country and we cannot adequately administer our current government programs (SS and Medicare), then why should we GIVE anyone anything when we cannot afford what we already have?” It sounds like the housing crisis, when everyone took out equity lines and lived beyond their means. I know you understand all of this, but it is unconscionable that our nation continues down this path. We have to correct the current system first. Feel free to pass it on

Tampa Trib Article

I just added the Tampa Trib/TBO article that ran yesterday. While it is okay, it is inaccurate in some of the items - such as overnight nursing only being needed and the cost @ 300,000. The need is 24 hrs and @ 24 hours/365 days a year it is 300,000 + and for 12 hours per day/365 days a year it is 150,000 +. Some people were brutal in posting comments but I do realize that this is an article, not the whole story and not all that Megan is. Megan has not always been like this and if not for medical side effects, some screw ups she would not be in this position. On the other hand, these devices have also saved her life from dying from the medical mishaps. Yes - she has a genetic metabolic, nuerological disease. Her seizures are bad - there have been too many physcians who are much too passive and ALLOWED her seizures to escalate while experimenting with medications to try and fix them. Most write these kids off and dont try hard enough. Parents with children like Megan understand that there are some things that can help and unless you scratch and fight it does not happen. Our point was to be that there are children less severely affected than Megan, who receive "free nursing" because they qualify financially. Because we are not indogent we dont qualify. Our private insurance does not cover. I cant buy the coverage, or else I would!!! Believe me, I would! Why does the child from the family that is indogent deserve a better quality than my daughter - the daughter of a family who helps to provide for the indogent family. They get to sleep because they have a nurse. Then in the morning they get to get up and do whatever - because a new nurse comes. I do not want someone else to "take care" of my child. I am on it - but I do need to sleep so that I am able to . I also need to be able to wean her from this ventilator which will require supervision so she can have a better quality of life. That is the goal here - it is not to torture her. And she does know she is loved, and she does love us.

Giving all for Megan

Giving all for Megan

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Overdue update

Another month has gone by and a lot has happened. Meg has been sick for the entire month of August with a throat infection that will not go away. The omnicef started to work and then the puss returned within three days of the last dose. She then had Rocephin shots three days in a row which cleared up the tonsils again - for one week exactly and then it was raging again. We then started cleomycin which once again cleared up the tonsils until the 9th day of treatment(10 total) which was this past Monday. We stopped that one and the Dr. switched her to Ciproflaxin and Diflucan thinking that it is fungal or yeast and/or a very resistant bacteria combo and we should try to get it with these two. Maybe psuedomonas? Commin in kids with trachs. It responds to the antibiotics and then resists it. I hope that we dont have to go inpatient to treat this one. Being sick is a big setback for her. All that rolling has come to a halt. We also started her on a new seizure med - rufinamide which was approved in the U.S. in November of 08 and it just being prescribed to patients this past spring. I have seen less seizures since she has gotten to full strength. I could not count the number in a day anymore and today I have seen about 8. She will have more when her body is fighting and illness too, so maybe it is working better than I see right now. The ketogenic diet is also planned for September still. Pat and I have met with Senator Victor Crist last week to talk about the gaps in health care for Megan and the devastating effects it has on everyone and how Megan deserves the same medical attention that someone who does not have insurance or cant afford insurance gets. Why does she not qualify - it should be a quality of life issue.



Rachelle also left for grad school - we miss her a lot. She became a normal fixture and part of every day around here. Meg sure does love her too. We will be happy to see her when she visits us - RIGHT RACHELLE? WHEN YOU VISIT US???????



Kaela(Rachelle's old roommate) started helping out this past Monday and she is training on all Meg's stuff. So far so good.



Going to go eat dinner right now - blog later.



Article in Tampa Tribune today - will post it in a little while

July has gone by very quickly. Cant believe it is the 29th already. Still working on many of the same issues but making a little headway which feels pretty good. My mountain of paperwork has been reduced to just a laundry basket full. James is getting ready to start football next week so that really takes a big committment from us as there is practice 3 nights a week and games on Saturday at different places. It is a lot of fun to watch them play and I am planning on trying to take some of the games this year. I found these cooling cloths called Frogg Toggs that you wet and then they keep you cool for a couple of hours that I think will really help her to be outside. Heat intolerance is part of her condition and she just shuts down so if these work it will give her a lot more freedom. We do live in Florida so getting away from the heat is not an option.

We received some information from a geneticist in Atlanta that we have been working with and she is running some additional studies on Megan. Seems that her mitochondria are damaged but her thoughts were that it did not start there and the mitochondrial dysfunction is from a gene with a transport or processing issue, better known in the medical world as diseases that are inborn errors of metabolism. She has them pretty much narrowed down to a few. The prognosis is not better or different than it being the mitochondrial dysfunction primarily. The ones with testing being run are also not curable and are progressive and degenerative. Her presentation of symptoms is classic for the ones the geneticist discussed with me and I actually had them printed in my notebook of "stuff" that I think is relative. Still like a punch in the face though. Always holding out for the one Dr. to say "Good news - it is not what we thought and it is this and we have a cure." That would be part of the Miracle that I pray God will grant Megan. I dont care how it comes about - a scenario like that or any other - we'll take it!!!

Of the few I am hoping that if it is any of them it is the Pyruvate Dehydrogenase Deficiency. The others are leukodystrophy and liposomal storage diseases. All of them are metabolic diseases and a couple of them actually are classified under the United Mitochondrial Disease Umbrella. I was familiar with them when she spoke with me about them because I have read and researched them so many times. She was able to tell me that it was autosomal recessive meaning that Pat and I both carry a defective copy of the same gene and that the chances of any of our children inheriting the disease had only a 25% chance. The chances of us both having the same bad copy were incredibly low. We had a better chance at winning the lottery. The boys can both be carriers but they would have to meet someone with the same bad copy and then would have the same odds.

Meg was doing good the past couple of weeks and actually rolled over about 6 times by herself - in one day! She was showing off. She was so happy and smiling that she did it. Both her therapist and me were so excited when she did it!!! We have great therapists. They really love Meg.

She is on Diflucan right now for yeast overgrowth in her gut and mouth which is another little setback as it is killing her stomach. I have not slept in 2 nights (neither has Meg) and am really tired. Think I have to cancel therapy for today. She is not up for it and neither am I. My eyes are crossing right now as I am fighting to hold them open. Ryan has been awake since the crack of dawn and Pat left for Atlanta for business around 5 am so the day has been started for a while here already. James is sleeping - seems like this summer the sleep monster invaded his body!

Last thing - still waiting on the Ketogenic Diet. Another Mom told me about the Modified Atkins for seizures too. Contacted the Dr. at Johns Hopkins who is the brains behind them and they are having a study coming up that I might put Meg into for the seizures - if we can help with those more it could help to slow down the progression of her disease and give her a better quality of life overall.

Posts

Wow. I just figured out that there are a bunch of posts in the blog that I could not see(I think I have mentioned before that I am an idiot with this kind of stuff sometimes). I have read each one and am speechless with the love and compassion in each one of them. Thank you to everyone for all of your thoughts, wishes and prayers. I know they have helped.

My gratitude is endless! I know if Megan understood, hers would be too.

Happy 4th of July

Can't believe it is July 1st already. I love the 4th of July. I think it is my favorite holiday besides Christmas. Aunt Wendy sent Meg a 4th of July dress in January that I cant wait for her to wear. When we were deciding if we should proceed with the Trach for Megan I remember being home in her room and holding her dress and thinking - she has to wear this dress on the 4th of July. As strange as it sounds it was a turning point for me in the decision process because I could not imagine her not being with us on the 4th. So the dress is more than just a dress for me at this point and so is the 4th of July.

Megan had her central broviak line removed over this past weekend slightly ahead of the scheduled date of July 2nd. She developed infection in the lines that had to be treated right away and removal right away so it would not turn into sepsis. Those lines are scary things. They dont belong in our bodies. I was so careful with it and she still managed to get infected. I think she did it on purpose so she could go in the pool again. It is a little bit more freedom for us. They got in the way A LOT. Her chest looks so bare now too.

Going back to the PICU was scary. I was afraid Megan would get a secondary infection and would get sick. It was nice that we had a private room so we did not have to share germs and it was really good to see some of the nurses that I became so bonded too. I have to make time to be able to stay in touch.

Summer is rolling by and we are still just taking it day by day. I am sad that we are not going away with Jimmy and Wendy this year, but we did not know how or what was going to be going on this summer. Still dont really!

Megan has ongoing seizure issues and it sounds like she is going to start the Ketogenic Diet. It can be helpful and certainly should have less side effects than ACTH. Have to go do some reading on it now.

Happy 4th of July!!

Busy Week

First thing I have to say is I have no idea how to respond to comments that I get - I am an idiot sometimes with that kind of stuff. Thanks for all the info. I have been up every chain of command and every tier of social workers you can think of. I am finally making progress with the Senator's office. The med waiver I have applied for and when she turns 3 she can actually be on the list - however long it is. I think that we are stirring up an area where there is a great need in this country and hopefully we will be sucessful in getting some things changed for not only us, but other kids and families like us.

School is out here as of last week and the boys are home. I like it better - even though the house is really crazy. No having to get anyone out the door and force myself up at 6 after only getting to sleep a short time earlier. I can sleep till 8 now. Woohoo! Trying not to fight the grind on any level. Making appointments that work for us and not pushing Megan too much.

We have some new stuff happening - going to Detroit to see a specialist that works with infantile spasms and metabolic issues in the brain. I found him through other blogs and chatgroups from parents who have dealt with stuff like this too. We are slotted for August I think - first available. Cant wait! Have a whole list of genetics that have not been run that can be helpful too in sorting some stuff out. I have been busy doing my research.

Think I found the van style we need - rear entry - full cut so Meg can sit up in the second row between the 2 captains seats and we will still have the option of the bench in the 3rd row if needed. Like I said before - busy week!

Last night I read a book to Meg I have had since she was 1 month old - The Magical Mermaid. I have never been able to read it to her as I thought it would be better for a 4 year old but I thought why not. It gave me mixed emotions. I cried thinking back to when I bought it - I had no idea that she would go through all of this. I cried too thinking about how you take reading a book to your toddler for granted and how I wish I could just do that comforatbly and enjoyably every day with her. Does not mean that I am not going to read to her - still going to. I love it and it makes me feel like there is some sense of normalcy going on.