Monday, December 29, 2008
I am also really debating how to go forward with future therapy. How much is too much? Am I trying to make her body do things it cant to reach the dreams that we envision for her? If she could tell me I am sure I would know these answers. I dont want to overdo it or underdo it. I have to find the balance here. Running all over the place all the time has not done very much to help her it seems since the seizures can undo it so quick. I will pray for guidance from up above to lead us in the right direction.
Have been thinking about this exerciser I saw at the World Disabilities Conference called the Quadrisizer (sp??) - it could do a lot at home and eliminate all of the running around and appointments and allow us to be in charge of each day again. I so miss that! The price tag is not cheap though. My friend Kristi in TN who has an 8 year old Mito daughter, Mayci is going to see it tomorrow I think since the company is about 4 hours from her in TN. The developer is a great guy. He built it for a family member initially. Kristi and I went to the conference together and I dragged her to the expo booth and told her I want one of these for Megan. She was impressed too. We met in Wisconsin over the summer and were instant friends. Aside from Megan and Mayci we seem to have a lot in common even though we are from different worlds - girl from Long Island originally and a girl from rural Tennessee. Who would think, right? Mayci also has had mycolonic seizures and is on several meds and is doing well right now. The HBOT has almost completely done away with the seizures for Mayci. She really benefited from it, but has had about 90 treaments in the heavy duty chamber. Write more later - going to try to sleep while Megan does.
Saturday, December 27, 2008
Thursday, December 25, 2008
Friday, November 14, 2008
Thursday, November 6, 2008
I have had a lot of sleepless nights in the past 2 weeks. We actually did an entire all nighter this past Monday. I cant believe how old I feel. I was literally sick on Tuesday from no sleep. The whole room was spinning and I was nauscious. Feeling really sad these past two weeks and crying a lot. I keep hoping for a good day - a normal day and they never come. Sometimes you hit the wall and I hit it hard this time. There really is not anyone to talk to except for Pat because no one else REALLY understands - even as hard as they try to. I feel cut off from the rest of the world and dont know how to get back to it. There is no time to figure it out either. Most of the time I feel like I have got it and I have what it takes, but on days like today I am lost. Have to stay strong though. James and Ryan need me too and besides- Pat is out of town on business - no one to pick up the slack tonight.James has to be at King High tonight to volunteer for an event and I have to take him and pick him up. Little things like this take planning around here!
Have to start the food battle with Meg now so we can keep feeding her orally. If for nothing else to keep her mouth muscles working so we dont end up having to suction her. If it were not for the gtube feeds she would be an air plant by now!!!
Wednesday, October 29, 2008
Tuesday, October 21, 2008
Packing for James and Ryan took 10 minutes each comparred to a couple of hours in Megans room. I am really exhausted and have not eaten yet today - hardly had anything to drink either. I need to try to take better care of my eating but it seems like something always gets in the way. James asthma has flared with the polyn and I could not find the heavy duty inhaler - I put it somewhere safe and boy is it safe. Had to go to the doctor for him today to get a new one but that was after we were at All Childrens for 2 hours in the audiology dept for the results of Megs latest ABR done a couple of weeks ago and to have her hearing aids reprogramed, cleaned - a tune up I guess. We also are introducing sign. I think I asked Meg in sign if she wanted to eat Mommy instead of if she wants to eat. My brain is trying hard to hold onto the signs we are starting with but sometimes I cant even call the right childs name out so this should be interesting. Poor Megan is going to say very inappropriate things someday hopefully.
New York should be beautiful - leaves changing, cool weather. We are taking the kids to a real pumpkin patch. None of them have ever been but it was always one of my favorite things to do as a kid growing up. Long Island really is pretty. Sometimes I wish we were there for the seasons and also because the climate would be better for Megan. The heat just kills her. We have to stay in so much over the summer that it gets depressing to me. Also makes the summer so much fun for me with all of the kids home!!!!!!!!!!!!!!!!!!!!!!!!!!
I am going to put Meg, James and Ryan on top of the biggest pumpkin and take their picture. I will post it when we get home.
Oh! The girl scout troop emailed me today and want to name/dedicate their spring triathalon to Megan - last year it focused on girls getting strong. How fitting!!! They said they have been following Megan for a while and the troop wants to do this. I was really touched. I of course agreed and volunteered us to go to one of their meetings so they can meet her. Pat thought it was really special too. Kids are certainly amazing.
My friends children are so compassionate towards Megan. Anna, Niko and Sabrina just love her and oogle over her. Corbin and Connor are always kissing her and coaching her on to move her legs and make all kinds of noises at them. They enjoy her. Tyler and Maggie never pass by Megan without stopping to talk to her or rub her legs or something. All of her crying does not bother them either - they dont get annoyed, they want to help her!!!! Ryan told me after her birthday he wishes he had the disease so he could take all of her hurt. I told him that I didn't because I love each of them the way they are.
Have to go now - going to eat something. Maybe everything.
Sunday, October 19, 2008
I think we helped to raise a lot of awareness about Mitochondrial Diseases. I know I did not know what they were until it was in my house. The United Mito Disease Foundation does not support HBOT but that does not mean I am not behind them 100% in their fight to raise awareness and to help find a cure. I think James wants to do something to earn some funds for the UMDF. It is good for him in more than one way obviously.
I wish I had more time to post updates but the schedule is so tough and there just needs to be more hours in every day. Or I need a housekeeper. I dont want anyone else taking care of Meg except for short periods, but getting the everyday stuff done here is killing me. I have thought long and hard about this and have decided that would work - not a cleaning person that comes every 2 weeks, but someone to come 2 hours every day just to make beds, dishes, a load of laundry, you know - the stuff that piles up if you dont do it!!! For my next birthday I will wish for that - LOL!!!
Yesterday Meg had her photo done for the Dream Calendar. www.thedreamcalendar.com is the site. It will feature a special needs child each month and all the proceeds are going to help build an adaptive playground here locally. It was exciting to do this with her. It is something you dream of doing with a little girl. I dont think she has a modeling career in her future though - she threw up on the red tutu in the first 5 minutes and refused to smile - however 5 minutes after we were done she broke out in a big one????
I am having some urine testing done that will be processed in France and detects all kind of things that our tests here cant pick up as well and depending on those results we might start altering her diet some - maybe the GFCF - dont know yet but I definitely know that her system is sensitive to everything and it can't hurt to try - once again - nothing to lose!!!! Mayci in TN has been doing it and her mom says it is unbelievable - she also has a mitochondrial myopathy and just turned 8 this month too.
Seeing Megan turn 2 and tasting birthday cake for the first time and enjoy it was the best gift in the world. Looking back at her 1st birthday I can see how much has changed. Being so engrossed it is easy to lose sight of that, but last year she looked like she was in a coma and this year she did not know it was her birthday but she got excited at the singing and had a little smile on. I will post pictures - I am so bad at actually downloading them.
Have to go now, so tired my eyes are crossing. Praying that everyone sleeps good tonight and I can get a full night in.........or something like that.
Thursday, October 2, 2008
James and Ryan are doing good. James is going to be 13 and is making straight A's, playing football for the New Tampa Sharks and is on the Nat Jr. Honor Society. He has really become so grown up and self-sufficient since Megan was born. He really stepped up automatically - like he knew he had to. Ryan is 6 and it has been a little harder for him. James misses me, but Ryan reeeeaaaaalllllyyyyy misses me. I could not imagine being 6 and mommy being so caught up in all this other stuff and being gone so much. I was a mommy kid and it hurts me to know how I would have felt. I am glad he does not blame Megan for any of it. He loves her so much and is very positive that we are going to make her better. He did tell me that he does not want her to be 2 because he is afraid she might die when she is 2. That is so sad that he has to even deal with those kind of emotions at this age. I could only tell him that I did not think that would happen and we are working hard to make her feel better and be better and God knows we are doing all we can.
I look at her a lot and think about her future and what it will be. Will she walk? Sit? crawl? Will I ever hear what her voice sounds like? She does not laugh - she smiles, but never really laughs - I want to hear her laugh so badly - giggle and squeal. The hardest question is how long will we have her? And how will we have her - hopefully in a way that she is not in so much discomfort and distress. I want her with us no matter what of course and fear that something will happen. I dont think I could survive that. It would destroy me, all of us. I dont want to dwell on that and try not to.
This is how mine and Pat's journey is supposed to be and we both are good with it and know we are up for the job. The boys too - it is positively influencing them in ways they dont even know and making them strong compassionate people. They are going to be great Dads someday and their wives are going to be very lucky!!!!
Monday, September 1, 2008
In the end of May we return to New York for a follow up and to find out what is next. We are told Meg will probably never walk, talk or have the ability to even sit up. Her immune system is weak and susceptible to infection which can be serious. A common cold could be fatal to her if her system can not handle it, and her life span will depend on these facts along with the quality of her every day care. The future for Megan looks bleak with no quality – confinement to a wheelchair with no purposeful use of her limbs, almost deaf and very visually challenged and dependent upon GTube nutrition to thrive. As you can imagine we were devastated & still have not shared these facts with her brothers. We feel that there is nothing positive to gain by burdening them with this. They don’t need adult burdens so young.
A day after the news Pat and I discusss how God is the only one who really knows the outcome and we continue to believe God and Meg's angels(I know she has them!) will guide all of us through this. We love Megan so much & are truly blessed to have been chosen as a family for such a beautiful, special little girl. I have come to realize things most can't-like the importance of the little things in life that seemed to whiz by me before. The smallest improvement or accomplishment by Megan are huge for us and for her. Most people would not even notice them. I also dont take each day for granted anymore. Holding her is the best feeling in the world – different than I can explain - & I am grateful that I am able to have that feeling.
We are considering revisiting the muscle biopsy as there is so much controversy in the information and diagnosis we have received from quite a few specialists. Having another muscle biopsy will not result in a cure, just more information so we are being cautious, especially because anesthesia is not good when you have a neurological or metabolic condition.
I have had Mitochondrial Disease Diagnosis confirmed and disputed depending on what specialist you speak to. There is so little known about the mitochondria and it is just coming to the forefront now. There is not any public research funding or grants and it is all private due to the rarity of the disease. What we know about it now is it is not curable, it is progressive and degenerative. Other than symptomatically managing pain and symptoms, basically when a child has the issues Megan has your child is put into a box and is left there until the inevitable. Cytochomre C Oxidase Deficiency Complex IV is the official “name” that was on her muscle biopsy. It is an electron chain transport issue. Mitochondria are the power house of your metabolism converting your food to ATP that is used for about 90% of your energy.
In summary she has a rare genetic disease that is progressive and to date has no cure or medically recognized treatment other than to treat the symptoms It is a neuromuscular and metabolic causing siezures, global & chronic developmental delays, and bi-lateral hearing and vision impairments. The metabolic part affects her immune system and the GI tract requring a GTube for nutrition to thrive. She also suffers from muscle weakness and fatigues easily. The only part of her system not subject to failure as we know right now are the red blood cells.
In June Megan and I left home for a month to try a possible treatment which does not have FDA approval for treatment of her specific condition/symptoms, but it is approved to treat various other conditions. Hyperbaric Oxygen Therapy has yielded positive results in many children with what is referred to as brain injury commony. Along with the HBOT( Hyperbaric Oxygen Therapy) you combine an Intensive Physical Therapy program to train the body in conjunction with “waking up” the dormant areas of the brain.
It was pretty tough on our whole family – physically, mentally and financially as insurance covers none of this type of treatment. Each round is about $10,000 not including any travel expenses. My husband and 2 sons, James age 12 and Ryan age 6 stayed at home. Every day brings new and different challenges for us as we find a way to try to function normally through all of the ups, downs, doctor visits, pt visits, etc. Thankfully we are still happy and keep finding we have strength we never knew we had. Another thing Megan has taught us.
Last week we ordered and received a “portable” HBOT chamber so that we can maintain the gains Megan made with our trip to Wisconsin and hopefully see some more improvement. The portable chamber is not as effective as the “hard” chambers in the clinical setting due to the amount of pure oxygen and the pressure level being less in the portable chamber. It is most effective to utilize both components though because you can not continually use the hard chamber as you would develop oxygen toxicity and you won’t see the gains in the portable chamber alone.
Some people would think why try something that is not guaranteed to help. I think, why not? And what is guaranteed in life other than each morning when Megan wakes up, God gave her and us another day. There is nothing that the doctors can provide so we can only go up. We also could not live with ourselves if there was a possibility that this could help and we did not try it. I think most physicians and parents who debates the success of this would feel differently if they had a child in this situation. The closest family members have difficulty understanding as they can not relate to what really is going on.
Today as I write all this I am sitting in a surgery center. Megan is undergoing yet another procedure and tomorrow I will be at Tower Diagnostics because she needs a PET Scan of her brain to show the dormant areas. This will be the only way to track if Hyperbarics is helping other than observation.
I see that she is making some progress with this so we will keep going forward as long as it is working. As parents you know your children better than anyone and I know our little girl is stuck inside of a body that wants to get places and we will provide every opportunity to enable her to do that and maximize the quality of her life.
Saturday, August 16, 2008
Monday, July 28, 2008
We went on a family vacation on July 19th and got back home last night. James and Ryan could not have been happier to have Meg around jamming up their action.
The most noticeable difference I can see is Meg's vision. I also THINK she is hearing better - or she is processing what she was already hearing???? So hard to tell, but something is going on new in that department.
Her ability to stay awake is improved which is good because we can get more aggressive with PT and hopefully get her sitting up. I imagine a view of the world from your back is really boring - especially now that she has seen it from an upward view.
Pat and I are focusing on more HBOT. I also got a referral from my Uncle Charlie in Melbourne about Childrens Hospital of Philadelphia which is interesting because I met a surgeon from Philly coming home from Wisconsin and then today the pharmacist at Publix (Mike)(who handles A LOT of stuff for Megan) & I were talking and his nephew has a very rare genetic disease which is different than Megs, but has some very similar features is being handled there and I have his brothers phone number and doctors name to contact for the metabolic, GI and immune system issues. Something keeps pointing there for some medical follow up.
We are going to be world travelers soon. Thinking I should just learn how to fly a plane, or get a tour bus????
Thanks to everyone for your support. Some of you who know Wendy (my sister in law) generously donated money to a Bank of America account for Megan. Words cant express our appreciation to Wendy for taking the time and energy to arrange it in the middle of her chaos and to all of you who pitched in for the benefit of my little girl.
Thanks for sharing our hopes and dreams. This is the kind of stuff that renews our faith and turns these dreams into realities.
Love To All -
The Garrett Family
Terri, Pat, James, Ryan, and MEGAN
Wednesday, July 16, 2008
Doctor after doctor told Terri Garrett that her little girl had a severe hearing disability and that she might be blind. IfTerri had listened to the doctors and not pushed as she had, things might be different.
Her soon-to-be 21-month-old daughter, Megan, might not have fmally discovered her hands, put weight on her legs, or said "Hi!" to her 12-year-old brother who has never heard her speak
The doctors didn't listen when Terri mentioned the seizure-like behavior little Megan was exhibiting. Megan didn't have the seizures in front of the doctors - they didn't have proof.
They told her she was hysterical. That she was overreacting.
"I swear you just get dismissed," Terri said.
She finally caught Megan's seizures on tape and took it to a neurologist - finally some hope. The doctor believed her. But the doctor didn't know what was causing it - or how to treat it.
Terri was told that her baby girl wouldn't live to see her second birthday. Megan turned 21 months on July 17th.
Terri was told she should just take little Megan home and make her comfortable.
Terri knew she couldn't do that. There had to be more.
Coming home from the upteenth doctor's visit, Terri retrieved the mail and ran across a magazine article about Shannon and Grace Kenitz.
"It was like reading my life,"Terri said of reading about 9-year-old Grace, who doctors said wouldn't celebrate her second birthday.
Grace is diagnosed with the same Mitochondrial disease that Megan has - Cytochrome C Oxidase Deficiency Complex IV..
Grace's mother also refused to listen to the doctors, who told her that she should take Grace home and make her comfortable.
Shannon,who lives in Wisconsin, found a treatment that seems to work wonders for Grace. It's the same treatment Terri is getting for Megan. It's called Hyperbaric Oxygen Therapy.
Essentially, it.'s a chamber in which the patient stays for a period of time - in some cases wearing a hood over the head - and is immersed in high-pressure 100 percent oxygen.
For those with Mitochondrial Disease, the increased oxygen seems to help stimulate the patient's mitochondria to produce the energy it is supposed to. "Mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth", according to the United Mitochondrial Disease Foundation. "When they fail, less and less energy is generated within the cell."
The Garretts talked it over and decided to give the controversial treatment a go despite its nearly $10,000 price tag. The Food and Drug Administration has not approved HBOT for the treatment of Mitochondrial Disease and many doctors dismiss it as a waste of money.
"What do I have left?"Terri remembers asking herself of the options for Megan.
Though the Garretts have health insurance, the policy does not cover the HBOT treatments; meaning the family must come up with approximately $10,000 each time Megan goes to Wisconsin.
Megan and Terri are currently in Wisconsin, finishing up their first round of 40 HBOT sessions. They are expected back to their Temple Terrace home this week.
OnJuly 4, Terri's husband and sons came to Wisconsin to visit them and to meet Shannon and Grace and another family from Tennessee dealing with the same illness.
That's when Megan startled her eldest brother by saying "Hi!"
She never spoke before the HBOT sessions. Megan also never noticed her hands before. Or looked at her mother before; "It's like the haze is gone,"Terri said, her voice cracking with emotion as she recounts the struggle her daughter has gone through.
Megan is now reaching for things with her hands. She's also discovered how tasty they are as she constantly slips them into her mouth.
"You cannot tell me it is not in conjunction with hyperbaric" Terri said of her daughter's progress. Megan has also been undergoing physical and occupational therapy to build up her muscles and coordination. She's able to stand up with assistance and put weight on her legs.
Along with the HBOT treatment, Megan has also had to have a feeding tube at night to fulfill her nutritional needs - since her cells produce only 5O percent of the energy they're supposed to.
"She's finally grown," Terri said. "She's gained some weight. She's coming alive.".
Before the treatments, Terri said her daughter was "a brain stuck inside a body that doesn't work." But now that she's undergone nearly 40 HBOT sessions, Megan is starting to come around and take notice of her surroundings.
Terri is planning on taking Megan back to the Wisconsin facility next month or early September for another round of sessions.
The treatment, the cost of travel, lodging, food and therapy will run the family in the neighborhood of $10,000 - again . . .
On top of that, the Garretts want to buy a home system for Megan that she can use in between major treatments inWisconsin. A home system is expected to cost approximately $20,000 after getting all the other periphery equipment needed.
"We're 'going to be living in a box,"Terri said, if the family doesn't find some way to offset the medical and travel expenses. She would like to hold a fundraiser; but hasn't had the time to think it through yet.
How you can help/where to learn more:
To offersuggestions or' financial support, e-mail Terri Garrett at email@example.com.
Go to Megan Garrett's Caring Bridge Web site to learn more about her condition, the treatment she's receiving and about her family. The site is located at http://www.caringbridge.org/visit/megangarrett.
You can also go to the United Mitochondrial Disease Foundation website at http://www.umdf.org.
Sunday, July 13, 2008
We will keep moving ahead on this path and see where it goes!
Saturday, July 12, 2008
We are going to talk about a return trip for September and we are working on the home chamber - Thanks to all of the emails and good wishes.
Friday, July 11, 2008
We got to Wisconsin on June 16th and started treatments on the 17th. The first thing I noticed is how Meg's vision got noticeably better and her eyes got very clear and bright. She seems to be tracking most of the time and I think she can see farther distances than before.
Her energy level is unbelievable. She is not tiring so easy and has so much more stamina to accomplish therapy. Also mentally she is much more present. Physically she has finally discovered she has hands - I am not sure she knows what they do yet, but she knows they are there and I am guessing she likes the way they taste.
She really is enjoying getting her hands in her mouth when she eats and then rubbing it into her hair......its all good - I have been praying to be able to be frustrated with little things like this. I can't wait for her to tell us NO! and then run away like a bad little girl - it is going to make me so happy.
I am seeing so many little things, but they all add up to so much. From what I have learned this is typical of the first 40 treatments, The next two sets of 40 should knock us off our feet. We come home on the 17th and I have to start to make arrangements for 40 more in conjunction with the intense physical therapy she is getting. That is going to be a challenge to have to leave the family again. I miss them and I know they miss us too.
It is hard but we have pulled together for Meg. James and Ryan could not get enough of her when they came out to see us over the 4th of July. James said she said Hi to him and he was right.
On Tuesday, July 8th Meg busted out a - "HI". It was crystal clear and everyone in the therapy room was silent - I think in shock for a moment - then it was pure excitement. She said it a couple of times today too. Everyone here is great.
I have came accross some genuine people here who know where I have been as they have been or are there now and are so supportive. It has been perfect for us.
Mayci is another little girl treating here now. She is 7 and has mitochondrial disease. Her muscle biopsy showed the same as Megs - Coenzyme C Oxidase Deficiency. Check out her website if you can @ www.westtennesseecares.com.
Shannon is Grace's Mom (the article I read that got me here) and she has the biggest heart. Grace is amazing and so funny. James and Ryan really enjoyed her and were happy to hope that Megan will be able to progress as Grace has and start having some fun for a change.
By the way, Meg is smiling a lot more - she thinks she is funny too! Her temper is still pretty fierce, but she comes by that honest..... must be from Daddy (we have to blame someone). I cant say thanks enough to everyone for all of your help and support.
Thanks especially for all your prayers - God heard us. I want to thank Him the most for everything he has given us and for enabling us to have a baby as sweet as Meg and giving us the abilities to care for her. It has broadened our life so much and changed it forever for our ENTIRE family and many of our friends.
Tuesday, July 1, 2008
Tuesday, June 10, 2008
Great treatment, but so hard not to be able to see the boys for so long. I hope they understand....