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Help a now 15 yr old get her life back

$9,515raised of $100,000 goal
9%

Organizer: Larry L Beneficiary: Mya and family

Please help Mya and her family. Mya has been sick for 4 years & the Dr.s don't know what is wrong. Our medical bills and living expenses are financially devastating the family.

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Fundraiser Details

In 2010 Mya was an active and out going young girl.  She was on a swim team, rode horses, was a straight A student in school and loved to play the flute.  Then, in May of that year, Mya started having severe abdominal pain.  We didn't know what was wrong and took her to the ER.  After several days in the hospital, the doctors determined she was not having an Appendicitis.  They disgnosed her with an Omentum Infarct and discharged her without any real remedy.  She continued to have pain and fevers and multiple hospitalizations.  Finally, after going to multiple hospitals she under went abdominal surgery in July 2011.  They removed her appendix and a Meckel's diverticulum which is tissue left over from when the baby's digestive tract was forming before birth.  In Mya's case it caused the constant pain.

Soon after the surgery, she became nauseous and slowly lost her ability to eat until November 2011 when she was put on her first feeding tube.  The doctors once again had no idea what was wrong with Mya.  She continued to get worse but found in January 2012 that she could actually eat.  When she did eat, though, she was doubled over in extreme pain.  Still the doctors didn't know what was wrong.  This went on for months with multiple hospitalizations and specialists.  Finally in April, a Dr. at an adult GI clinic diagnosed her gallbladder failing.  We had to go to four ERs before we could get someone to perform surgery and when they did, they removed her gallbladder. 

She started eating again with the aid of medicine until the medicine stopped working and she had to be put on another feeding tube which she is on to this day.  She can eat once again, but again with extreme pain.  Of course she has no gallbladder so the Dr.s as always have no idea what is wrong.

During this whole time, Mya was in and out of the hospital so much that she was hospital home bound for school for most of 6th grade and all of 7th grade and is now being home schooled.  She has no life really to speak of. She has to be on a feeding pump roughly 18 hours a day.  Her dad had to quit his job in 2010 to help take care of her and has since started his own company but is very limited in terms of time dedicated to the buinsess. As such, between the medical bills and everything else, Mya's family is financially devastated and are in jeporady of losing their home.

Your support will go to helping with the medical expenses and day to day living expenses as well as trying to get Mya her life back so she can enjoy herself once again.
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Updates

Updates

06/19/2014
by Larry L
Hello!  It has been nearly two months since my last update.  To all of you that have helped support us financially and through prayer, my appologies.  So much has happened since April but we are no further along to Mya's recovery or cure.

Let's see... Mya went down to West Palm Beach a couple of months ago for what we thought would be abdominal surgery to clear whatever it is that is blocking her intestines.  Unfortunately, this trip turned into a real nightmare for the whole family.  The surgeon wanted to perform a fundoplication at the same time as the abdominal surgery.  This procedure takes part of the stomach and wraps it around the esophagus to prevent GERD or throwing up.  While we didn't argue that Mya may need this procedure, we (parents and her doctor) tried to explain that Mya probably could not handle both surgeries at the same time.  Instead of agreeing with us, he went nuts and called the Dept. of Children and Families reporting that we were trying to kill our daughter.  Well, we had to play this out - my other two daughters were called out of school to be interviewed, Melissa and Mya were interviewed twice, once in West Palm then again at Wolfson's, I was interviewed and they had to come out to the house.  Needless to say, after they did their interviews and inspection of the house, they realized what a farce the whole thing was.  The result of this doctor calling DCF, though, had a severe impact on Mya. Her doctor and a surgeon here in Jax that has done procedures on Mya in the past wanted her back in Jacksonville.  But the return (via ambulance) was delayed two days and hence we lost the window of opportunity for this surgeon.  I can't tell the emotional toll it took out on the whole family, especially Melissa.

Well, she returned to Wolfson's via ambulance and was there for about a week with nothing more than trying to get her stabilized.  She was discharged and sent home.  Being at home didn't work out with the other two girls running around and Mya's need for calm and quiet so she and Melissa took up residency at a hotel downtown where they are now, waiting for an appointment with this local surgeon.

As you can read, we have been through hell because of the surgeon in South Florida and nothing was accomplished.  Mya really needs abdominal surgery and we still don't know when that will happen.  The surgeon is going to 
initially perform an upper and lower endoscopy to see what is going on but beyond that...

A note about our fund-raiser.  I set it for a year (last year) and it ended in April. I am not sure I can extend it.  If you like to continue your financial support or know some one that wants to help, you can always continue to use PayPal - larry@thehungryfrog.com.  Of course, your continued prayers and thoughts are most welcome.  Thank you and G-d Bless.
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04/21/2014
by Larry L
Good day to our wonderful supporters!  It has been some time since my last post.  This is mainly becuase it is very difficult to write these updates.  I am torn between just keeping a lower profile and letting it all be known.  Anyway, a lot has happened since my last update.  Mya spent over a week in the hospital this month.  She managed to be home for her birthday but went in the next day.  This is the second year in a row that she and Melissa missed my birthday.  They performed many tests at the hospital and again the tests were all pretty much inconclusive.  Mya's condition is so evasive it is mind boggling.  She was anemic and needed a blood transfusion.  She was also very backed up and the Golytely they used did not completely clear her.  While she was there, her doctor was able to witness the dire straits she is in and the challenges we face caring for her at home.

The plan now is to meet with a surgeon on Friday and determine if a bowel restructuring will help her digestive system.  This is a rather major surgery which entails removing a section of her intestines.  We'll know more on Friday.  This won't address what ever is the underlying cause, but maybe it will help to get her off the PICC line (which has been almost a year now) and maybe get to eating again or at least using her fedding tube.  After that or before depending on timing, we are going to try and get her to a Rheumatologist in Atlanta.  Much of what she is experiencing may be rheumatoid related and may be the source of all this.  Who knows.  

Finally, (I know, long read), I want to once again thank you all for your support.  The money we've received has helped pay for Mya's prescriptions, other medical and hygene needs as well as just some basic comfort items to help Mya get through the day.  G-d Bless you all!
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03/12/2014
by Larry L
Good day, all.  Here is the latest.  We are still waiting to hear whether Mya will be going to Houston or not.  It's been about 3 weeks and still no word.  We have two doctors working with us trying to get her there.  In the meantime, we are going to start trying to get her to a place in Milwaukee.  

Her genetics doctor sent out for testing for MNGIE (http://ghr.nlm.nih.gov/condition/mitochondrial-neurogastrointestinal-encephalopathy-disease), but as expected it came back negative.  This is both good news and bad news.  The good news is the type of Mitochondrial disease they tested is terminal.  The bad news, is it was not exhaustive so we are still in the darK and she still may have MNGIE.  We are going to get rheumatoid involved here or in Houston which ever happens first.

Anyway, Mya keeps suffering, we keep trying very expensive medications to help with the symptoms, both her parents are exhausted and I continue to find it difficult to work.  

More updates later and as always, thank you for your prayers.

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02/17/2014
by Larry L
Well, it's been a few weeks since my last update.  These last few weeks have been very difficult. Mya is just not doing well. She's had a fever of over 102 for the last several days and today it spiked past 104. She spent the day throwing up. What comes up is mostly bile and feces. It is, to say the least, very gross. Tomorrow they are going to draw blood for labs and to hopefully see what may be causing this fever. The stress level in the house is through the roof. This in part because at the moment we are trying to arrange to take Mya to Houston. This means the family will be split up once again. Last year as you may or may not know, Melissa and Mya spent 56 days in Cleveland. We still haven't got anywhere with getting a blood test to determine whether she has Mitochondrial Disease but we are getting closer. They may even draw blood for that tomorrow as well. That's about it for now. It is very hard to write these updates. It is even harder to try and function day to day in the real world. G-d Bless. 
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02/04/2014
by Larry L
     Hi all!  First and foremost, I want to thank JCE teachers and staff for their most generous donation and support.  JCE is one of if not the best elementary school in Florida.  This is because of their principal Mr. Story and the commitment of the parents and teachers to their children's education.
     It has been a couple of weeks since our last post, mainly because not much is going on.  Mya has had no real change in the last two weeks.  She continues to try and eat only to throw up near immediately.  She's been taking Domperidone before she tries eating but because this medication makes your stomach muscles contract, she ends up throwing up before she even starts to eat.
     Her pain is still not being managed properly and we are searching for the right combination of medication to help.  She says that most of her pain is in her bones.  This has been evident for some time now.  
     There is probably more to be said, but I can't think of it.  We are all exhausted and frustrated that there really isn't a lot of improvement.  One positive note, her seizures have all but ceased.
     Until the next time.  G-d bless and take care!
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01/15/2014
by Larry L

     Hi. Let me first apologize for the long absence of updates. I took Mya's sisters out of town for a little bit before the new year. They had to get away from this environment for a few days. And then I had surgery on my arm right after we got back. I've also been trying to actually work the last couple of weeks. It feels good to be out and about while at the same time it pains me to be away from Mya and her mom and not being around more to help. Such is the life of a working dad, right? It makes it even harder because Melissa is in so much pain from her own ailments. Well, enough of that.

     The anti-seizure medicine Mya is on has drastically reduced her seizures. But, they still come on unexpectedly and occur in rapid fire mode. For instance, Mya had a great day today. She was laughing with her care provider and cutting up. She was acting like her old self (old self being 10). Then, this evening she had seizures back to back for about 15 minutes. When she finally came out of it, she had no recollection of the good day she had.

     She started using her feeding tube again this week. First time in months. We got her formula up to a pretty decent rate of 95ml/hr. We thought we were having some success and maybe we are. Until yesterday when she threw up a whole bunch. Most of what she threw up was formula from days before and bile. So, her large intestines are still not working. We are trying not to see her throwing up as a setback, but...

     That's about it for now. We are still looking to possibly taking her out of Jax but just don't know where.

     Thank you all again for your continued prayers. I pray that Mya will get better in 2014 and the first part of it at that! G-d Bless!


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12/25/2013
by Larry L
I want to thank everyone for their prayers and support during this Christmas holiday. It is a time for prayers and to thank G-d and rejoice in family. 
Mya is experiencing seizures all the time now. They occur about every 20 min or so it seems. She will be walking to another room and will experience a seizure in mid stride. Fortunately her mom is there to catch her. She was able to stay out of the hospital the last couple of days but I suspect she will be back there tomorrow or Monday at the latest. Her doctor is on vacation which makes going to Wolfsons very challenging. 
Anyway, her condition is deteriorating rapidly and we just don't know what is next. 

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12/15/2013
by Larry L
Hi. Just a quick update. First I again want to thank everyone for their prayers and support. Mya continues to have seizures. She had 7 today. We had to take her to the ER the other night after she pulled her cecostomy tube out. They drew some blood and the hospital called to inform us that she had a staph infection. We are going to wait and hear from her doctor tomorrow whether to take her back so they can draw more blood and retest her or what. She is just so sad. The pain she is in is unbearable and we don't know what to do. 
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12/11/2013
by Larry L
Mya has tried to eat the past three nights. She has thrown up, but she is determined and that determination and strength is what is keeping her going. She pulled her deco stormy tube out the other night. She was in too much pain. Not sure what the next step is but I think her little body needs a break. Don't you?
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12/09/2013
by Larry L
Mya came home Saturday. The EEG and MRI did not show any abnormalities. The doctors think the seizures are related to a chemical imbalance. She tried eating last night and threw up all the food she are but she tried and that is a real sign of her strength. Next on the agenda is to get her cecostomy tube replaced. Hopefully, that will be in the next day or so. As always, thank you to all for your support and prayers. 
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12/06/2013
by Larry L
Mya had a very busy and challenging day today. In between her seizures, she had to finish the EEG study and then in the afternoon had a brain MRI. She has had minimal pain relief. I had a great conversation with her doctor this afternoon. He is definitely on the same page as we are. One of his priorities is to get her cescostomy tube replaced with one that is more manageable and less intrusive. Right now that is where most of the pain and discomfort is coming from. With a lower profile button type tube, it will be less likely to move around. Then we can get more focused on getting her feeding tube to work. On another note, I just want to say thank you to Heather Sams and all the folks who showed up at the Art Auction last night. I heard it was a great success  and a lot of fun. THANK YOU!!

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12/05/2013
by Larry L

Mya is undergoing a 24 hour EEG exam. It started at noon. She has a bunch of wires connected to her head, a camera to watch her when she has a seizure as well as a microphone. Which they just got a good idea since she just had a 30 minute seizure.


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12/04/2013
by Larry L
We had to call 911 this evening because Mya could not stop having a seizure. The ambulance arrived while she was in the middle of it and continued as they put her in the back and took her to Wolfsons. 
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12/04/2013
by Larry L
So many people have asked, "do you know what is wrong with Mya," or "have they figured it out yet." The answer I've been giving is no. But that is not really quite true. The Dr. that is taking care of her is a geneticist. Dr. Perszyke believes that Mya has a mitochondrial disease. These family of diseases tend to be rare and have no cure. Dr. P is not trying to definitively determine her illness because it is very expensive and he is more focused on the symptoms. So, there it is. 
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12/04/2013
by Larry L
Mya has now had it appears two seizures in the last two days. They've occurred at night, the first one around 8:00 and last night at around 11:00.  Each time she was just lying watching tv. We have no clue where these are coming from unless it is just another symptom or continued progression of whatever it she has. 
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12/02/2013
by Larry L
I noticed I haven't posted an update since the 22nd. Mya spent Thanksgiving in the hospital. They weened her off the pain medicine she was on and replaced her PICC line. It was a very challenging week for our family. 
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12/02/2013
by Larry L

Mya had a new experience about an hour ago. She had a seizure. Called 911 and the EMT guys (great techs) took her vitals. She is alright at the moment but we are keeping a VERY close eye on her.


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11/22/2013
by Larry L
Mya is being discharged tonight. There is/was a real conflict between her doctor and pain management. As such, she is being put on a pain pump which will administer her pain medicine in little doses as she pushes a button. This is very different then what she has been getting and not as effective at all. The source of the pain is still unknown and of course means she is still in agonizing pain. The situation is very tenuous at best. 
We don't know any short/long term plan and we don't even know if her doctor is going to be able to continue to follow her.

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11/18/2013
by Larry L
Mya's pain level is through the roof.  We can't figure it out.  She had an X-ray done last week and nothing showed up.  Of course, she has had previous X-rays over the years where nothing has shown up yet there was always something there.  I had a talk with her doctor tonight and he agrees that there is probably somehing that is going on.  Could be an infection or that the infection never fully cleared up.  He wants her admitted before the week is out. He's going to schedule to have her GJ tube replaced.  It's the same one she's had since earlier in the year when they were in Cleveland. They will plan to do other studies such as a CT scan and tube study to see what else may be going on. He also said to increase the frequency of her pain meds until she gets into the hospital. 
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10/31/2013
by Larry L
Mya continues to rest at home.  This new hole in her abdomen appears to be enlarging but I don't think the doctors are too interested in hearing about it so we'll just keep an eye on it.

She is holding down her formula without throwing up.  She does get very nauseous and it is painful, but it is another step in the right direction.

On another note, a dear friend of ours, Heather Sams, is having an art auction to benefit our family.  The event is Thursday December 5 from 5:00-9:00PM.  It will be at Heather's showroom - 3139 Philips Highway, Suite #100, Jacksonville, FL 32207
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10/28/2013
by Larry L
Mya is still in the hospital. This admission has been really hard and the surgeons can't seem to agree with one another or her primary doctor. That and she is a real mess (won't go into details). They are going to try J feeding this evening to see if her intestines can handle the formula. If it is successful she will probably come home tomorrow.

It's really sad that so much of her pain and misery could be avoided if the doctors did their job right and didn't just dismiss Mya's concerns, etc. She is going to have a very long difficult road to recovery for sure. 



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10/24/2013
by Larry L
This morning Mya woke up and had a temp over 101.  It is now over 103.  She and her mom are on their way back to the hospital.  Probably will be re-admitted.  This is a nightmare!
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10/22/2013
by Larry L
Mya came home today.  9 days in the hospital.  She is in a lot of pain. There is so much more to say.  Maybe later...
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10/17/2013
by Larry L

Here's the latest. Things are not good at the hospital. Mya's bowels have pretty much shutdown. They are going to perform a surgical procedure where they insert a tube into her large intestine so they can try to flush it out. There isn't anytime to think about it because the surgeon is going to Afghanistan next week for 3 months. All that I can say is: smile and wave boys. Smile and wave.


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10/15/2013
by Larry L
Day 2 at Wolfson's. Mya has been given a large quantity of Miralax and GoLYTELY through her J-tube (the tube that goes into her jujenum) over the last 24 hours or so with little success. The doctor is contemplating anorther surgical procedure to put a tube directly into her large intestines. 
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10/14/2013
by Larry L
     Mya was admitted to the hospital today. Don't know if that is good or bad. She really needs more help than she is getting at home and being at home they are not doing anything to diagnose the problem. I guess then that it is a good thing. 
     They are trying to clear her out and jump start her digestive system but she is throwing up more than anything. Not sure how long they plan to continue this. And, we don't know what diagnostic tests are planned. Melissa is at the hospital with Mya. Hopefully providing support and acting as a pincushion :). All on Melissa's birthday. 
     Well post more later. 
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10/11/2013
by Larry L
Today was very difficult because Mya ran out of pain medicine and we had to argue with the pharmacy to bring more out. But in the end they did and her dr agreed to bring her back in the hospital for additional testing and care. it really has become too difficult to care for her at home. I just hope he picks a thorough battery of tests and doesn't just do a little of this and a little that. 

Anyway, she be admitted Monday which is also my wife's birthday. I'll post more after we know more at the hospital. 
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10/07/2013
by Larry L
Today's update is: We had to hire a caregiver to help with Mya. She is requiring near constant care and comfort. With the other two girls needing attention too and Melissa's illness it was just becoming too much to handle. On a bright spot, I bought Mya a bunny last week. She has been wanting one for a few years. Now, if we can only get her feeling well enough it have fun with Clover.
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09/30/2013
by Larry L

Here's an update for Mya. But first, a huge thank you for all the support we are getting. We've reached the $5000 mark!

Had a long talk with Mya's doctor this evening. Mya is really getting worst and I expressed that to him. She is now unstable on her feet and the muscle spasms are off the chart. We decided to change up her meds and give it a few more days. He doesn't want to admit her just yet and doesn't want to do any testing for now. Primary focus is on comfort and controlling the pain. 

Thanks again for your prayers.


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09/23/2013
by Larry L

Mya is still home from the hospital.  That I guess is the good news.  The bad news is her muscle spasms continue to torment her.  It does seem like the nutrition cocktail she is on is working.  The medications she is taking (which are A LOT) seem to help a little but not nearly what she or we thought they would.  We are still waiting for blood test results from blood that was drawn about a month ago.  They should be back any day now.  I am not even sure what the doctor ordered but I did request a copy of them when they do get here.  Mya is also rather unstable on her feet.  She has fallen a few times since being home.  We’re not sure if this is due to the meds or what.  Anyway, life continues to be challenging needless to say. 


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09/18/2013
by Larry L
Mya will be discharged today.  Why? Because the medicine she needs to control her muscle spasms is not available in the hospital. Figure that one out. But the TPN nutrition seems to be being absorbed so I guess home is better than the hospital. No tube feedings for now.
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09/13/2013
by Larry L
We met with Mya's doctor. (Had to wait an hour). They are going to admit her this afternoon. Hopefully they can control her pain and amount of fluids she is getting. She also is going to need a catheter as she has lost the ability to pee. I suspect Mya will be in the hospital for several days. 

Her doctor feels he can control her symptoms enough to where she can start tube feedings again. I'm not so sure but have faith in him and will give him the benefit of the doubt as to his approach. We asked about a spinal tap to help with the diagnosis but he wanted to hold off on that for now. He is open to getting another pain block but wants to wait on that as well for a little while anyway. 

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09/11/2013
by Larry L
A new update. Mya continues to worsen. We meet with the genectist on Friday. In the meantime he had her try just water in her feeding tube at a rate of 4ml/hr. This is like a water faucet with a really slow drip. She tried twice and each time she threw up. The feed goes into her jejunum bypassing her stomach. It's as if her whole GI system is shutting down. Tonight he wants her to try and take Domperidone and try again. Domperidone helps stimulate the stomach muscles. We aren't holding our breath let alone trying to figure out how she'll keep it down. Anyway, I can see another hospital admission this weekend. ***** Since writing this, Mya tried the Domperidone and it did not work as we expected. 
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09/04/2013
by Larry L
It has been a bit of a while since our last update.  Mya has taken a turn for the worst and we have been pretty occupied taking care of her.  About two weeks ago she woke up puking bile.  Just out of the blue.  We took her to the ER but they didn't do anything for her.  She became very dehydrated and so we took her to Crucial Care several days in a row to get IV fluids until we could get a nurse out from Ambient.  This lasted a couple of days but she got so dehydrated that they could not find a vein to put an IV line in.  So, we went back to the hospital where she got and now has a PICC line.  

She cannot take anything in.  Nothing.  Not even through her feeding tube.  She is getting some cocktail of nutrients through her PICC line.  This is called TPN - total parenteral nutrition.  This doesn't help with the starvation she is feeling.  She is also having all kinds of other problems and is on so many medications that the days just go by in a fog.

She is supposed to start Virtual high school but we don't know how she is going to manage that.  And all this is having such an adverse impact on the rest of the family.  We are having to eat out almost all our meals because we can't eat in front of her.  It is like torture to her to smell food.

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08/11/2013
by Larry L
Mya had another bad night last night. I can't begin to describe all that she is going through and suffering. We are so ready to just put her in an induced coma until they figure things out. I want scream at these doctors so loudly. Each time they want us to donut their way when we already have. But no, the doctors know best and we are stupid parents. So Mya gets to enjoy her sisters' last week of school vacation going to three or more dr appointments unless they see fit to have her admitted. And even they do, which hospital this time. They have all written her off. 
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08/08/2013
by Larry L
We are preparing the admission packet for GW University Virtual High School Mya has to write an essay based on the quote by Joseph Campbell, “Opportunities to find deeper powers within ourselves come when life seems most challenging” The last couple of sentences reads: As my father quotes Richard Bach, “There is no such thing as a problem without a gift for you in its hands. You seek problems because you need their gifts.” Turning unexpected health problems into opportunities to develop patience, perseverance and hope have made me stronger inside. These are my gifts.

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08/06/2013
by Larry L
Mya continues to get weaker. If she doesn't stay on her preceding pump sheets that much more worse. This lack of a diagnosis is so frustrating. And without one we are trying to treat her symptoms which doesn't seem to be working very well. one doctor is changing up her antacid medicine to see if that works. In the meantime, school is going to start for our other daughters and Mya is not well enough to attend. We are pursuing a virtual private school but it's about $12,000/yr. Oh well, smile and wave I say. 
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07/29/2013
by Larry L
Mya has an appointment today (7/29) with Dr. Anthony Persyk. He is a genetics specialist. We have been waiting 8 weeks for this appointment. Mya had to get a blood test for this appointment. The results took about 6 weeks to come back but we have no idea how to interpret the results. Hopefully he can make it understandable. We are so apprehensive about this visit. We are so concerned that he will just write us off like so many other doctors have. On top of that, Mya was taking a boat full of supplements on the recommendation of another doctor so we don't know if the results will be skewed because of that. I don't suspect Mya will be getting much sleep tonight. It is all so overwhelming For her. 

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07/23/2013
by Larry L
Mya met with a new pediatrician yesterday, Barbara O'Reilly, in Jacksonville Beach.  She was very nice and really got the gest of what is going on.  She definitely seems promising. She said she was going to call Mya's original surgeon that took out her gallbladder to see if he would take another look at Mya.  Hope he does.  She is so miserable.  We had family in from out of state and she could not join us for any meals.
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07/17/2013
by Larry L
Mya's doctor finally called back after nearly 2. I can't fault him for taking so long. He is in such high demand. We had a lengthy conversation regarding Mya's pain and exploring a more permanent pain block. It's difficult to develop a treatment plan without having a real diagnosis but we have to do something. She is devestated that she has to be on the feeding pump again. It's just so disheartening. Anyway, her doctor is going to speak with a couple of surgeons tomorrow and finally call in her prescriptions we've been trying to refill for the past week. 
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07/13/2013
by Larry L
I don't understand doctors.  We have called multiple times to get a couple of prescriptions refilled for Mya and they won't call back or call it in. Even the pharmacy has tried. Then there is the issue with another pain block. When it was working, Mya was eating, exercising and living somewhat normally. Now she is back on the pump and we can't get them to call back about that either when it was the doctor's idea to do another one. I just don't get it. 
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07/07/2013
by Larry L
One thing that Mya is challenged with is finding the right foods to eat when she can eat. We know fatty foods are unacceptable. Probably because she doesn't have her gallbladder anymore. If anyone knows of a good semi-vegetarian diet please let me know.
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07/07/2013
by Larry L
Mya's pain block has worn off and she can't keep anything down. Guess she'll have to go back on the feeding pump. I called her Dr. 10 days ago and left a message. Never heard back. On Wednesday I texted him and he called back within 2 min. I love having his cellphone number. They are going to schedule another procedure hopefully next week.
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07/07/2013
by Larry L
Mya's pain block has worn off and she can't keep anything down. Guess she'll have to go back on the feeding pump. I called her Dr. 10 days ago and left a message. Never heard back. On Wednesday I texted him and he called back within 2 min. I love having his cellphone number. They are going to schedule another procedure hopefully next week.
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06/29/2013
by Larry L
Hello all!  What a wonderful outpouring of support from my friends on LinkedIn and Facebook!  Thank you all!  One question that has come up several times is: Have we taken Mya to Mayo?  The answer is we've tried.  Mayo Jacksonville will not see adolescents because Wolfson's handles all inpatient care for anyone under 18.  We had made an appointment for Rochester and I was about to make flight reservations when just hours before they called and said that they would not see Mya.  I would have been out $$$ if they called just two hours later.  But, we are very confident in the doctors at Borland-Groover and hope they are on to something.
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06/26/2013
by Larry L
Mya update - Mya continues to eat for now, but very little each time she eats and with extreme discomfort and nausea.  We have a call into her doctor.  But for now she is off her feeding pump.
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06/12/2013
by Larry L
Mya ate breakfast at 11:30 pain free and no vomiting !!! :) ( Cherios w/ banana & milk and a little bit of home cooked hash browns). Guess the pain block is working.

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06/11/2013
by Larry L
Mya received another pain block today.  As always, she was brave.  She did not receive the pain block we thought she was going to get but instead received the same type as last time.  Let's hope this one lasts longer.
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06/04/2013
by Larry L
Good news and bad news. Bad news is Mya's pain block has run out and she can't eat again. Good news is next Tuesday she is going to get another more longer lasting pain block. You can research if you want - Celiac Plexus Block. Basically, it's similar to getting a Novocain shot but it's in the digestive area.
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05/25/2013
by Larry L
Tonight my family ate together as a family for the first time since August of last year. Mya managed okay but was very nauseous afterwards. It's amazing to think that we haven't sat down together in almost a year. 
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05/25/2013
by Larry L
The pain block Mya received on Thursday seems to be working for now. She's actually able to eat without pain for the first time in months. Let's hope it lasts longer than a few days. 
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05/24/2013
by Larry L
Yesterday 5/23 Mya went through an Endoscopy with Ultrasound.  This proccedure is a normal endoscopy with a small ultrasound camera at the tip.  Fortunately and unfortunately they didn't find anything abnormal.  Fortunately, because when the doctor does find something it is usually pretty bad.  Unfortunately, because now we must continue to search for what is the underlying source of her problems. 
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