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 - email@example.com. Of course, your continued prayers and thoughts are most welcome. Thank you and G-d Bless.
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!
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.
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.
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!
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!
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.
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.
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?
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.