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Make Sure Mason Is Not Alone This Holiday Season

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Mason’s Story

Welcome! We know how hard it can be to keep in touch with everyone that we love so we've created this to keep friends and family updated about our lives.

Visit often and write us a note in our guestbook. We appreciate your support as we fight Fanconi Anemia.

Donations are accepted at https://www.youcaring.com/PrayersforJienaandMason. Thank you.



Fanconi anemia, or FA, is a rare, inherited blood disorder that leads to bone marrow failure. It prevents bone marrow from making enough new blood cells for the body to work normally and can also cause bone marrow to make many faulty blood cells. People who have FA have a greater risk than others for developing cancers and many who have FA eventually develop leukemia at a young age. Although FA is a blood disorder, it can also  affect many of organs, tissues, and systems. Children who inherit FA are at higher risk of being born with birth defects.

Jiena was born with a somewhat duplicated thumb and has never been a good eater. She's always been below the 3rd percentile for weight and height and has declared herself a vegetarian tiger. She's outgoing, loving, and exceptionally compassionate. Her diagnosis came at the age of 5. 

Mason was diagonosed with FA at 30 weeks in-utero. He was born with a shortened radius on his right arm, no thumb on his right hand, a barely-hanging-on thumb on his left hand, and an esophogeal atresia with a tracheo-esophogeal fistula. He also has a bicuspid aortic valve in his heart and a subglottic stenosis/webbing in his trachea.

This is our fight to live.

Latest Journal Update

Updates

I'm sorry I haven't posted in awhile! We have been so incredibly busy! So far, everyone is doing well.

Mason had a few bouts of pneumonia, but thankfully we were able to treat him at home and didn't have to take him to the ER. He had a dilation a few weeks ago and his esophagus is still stricturing, but not as severely as it had in the past so his GI suggested feeding trials. We had our first feeding trial under radiation to see how his esophagus and stomach handles food and found that he refluxes almost immediately after ingesting food if he lies down too soon. Although he is refluxing, he is not aspirating and his swallowing is perfect. The speech pathologist says that Mason has learned to protect his airway when swallowing so he's very excited to see us start feeding therapy. That will be according to his GI's approval though and it's something we're still waiting to hear back on. Last week, we switched out Mason's GJ tube for a brand new one and I'm so thrilled that we no longer have to deal with the leaky old one! For some reason though, Mason has been very protective of the area so he's not liking when we have to hook and unhook him from his feeds. He tells us that it hurts, but we have no idea why it would still hurt. The area also has no signs of trauma on it...

Jiena has had a few blood draws since I last posted. Once was for a blood count and the other was for a blood count plus to check her thyroid.The result was that her TSH levels are still high, but that it may be because we started giving it to her at dinner instead of breakfast. They said it absorbs better with less food in the stomach and a whole day's worth of food may be hindering it so we are giving it to her again in the morning and will need to have her blood drawn again in three weeks. Personally, I feel like it worked better when she first started taking it. Now, it doesn't seem to be making a difference. She's back to being sluggish and tired again and refusing to eat or says she's not hungry. I'm also noticing that she's always very irritable now and she's also not gained any weight at all this year. I found an online support group for those with hypothyroidism a month ago and the consensus with a large percentage of the patients on there is that they now feel better or have been able to come off their medication completely by going on a gluten-free diet so we are now going to give that a try. It's been a bit difficult because gluten is in everything, but I'm determined because I really want to see if it could help.

Eddison had been complaining of an itchy mouth after eating certain foods so we had him tested and found that he is allergic to (from most to least) peaches, all tree nuts, wheat, soy, and eggs. Great... We're still in the middle of figuring everything out here at home, but man has it been frustrating!

Despite all this, I've started an organization for Hmong families with another mom of a special needs child called Hmong Helping Hands. Disability and special needs within the Hmong community is an extra hard thing to talk about because no one wants to talk about it. For instance, Hmong Village in St Paul is an awful place for families who are wheelchair dependent to go to. There are parking spaces that require a handicap placard to park at, but no one cares and will park there anyway. My friend, Mainhia, who is working with me and whose son is wheelchair-bound, has called management, security, and even the cops on the offenders, but nothing has happened (no one is ticketed or warned) and she has even been told to no longer go to their establishment if she didn't like they way they did things there. She has also parked in the handicap space before to come back and find that someone has parked in the "no parking" space next to her car so there was no way to get her son back inside their vehicle without backing up into the street first. It's horribly disgusting how ignorant many people are toward disability rights especially in the Hmong community. We have come to accept that people just don't understand. However, not understanding is not acceptable so we've made it our mission to teach our community about special needs and why it's important that it not be ignored. It's going to be a tough battle, but it has to start somewhere and if not now by me and Mainhia then when and by whom? Our people have been in the US for over thirty years now and beliefs on the disabled are still the same that it's a curse or bad luck and should be ignored less the person who paid any mind catch that curse or bad luck too. I hope that one day, thirty years from now, other special needs Hmong families will be openly accepted and the hardships that families like mine and Mainhia's will be all in the past because of what we are doing now. I have so many dreams and goals for Hmong Helping Hands, but most of all, I don't want my children, especially Mason, growing up and being looked upon with pity or fear. I don't want him and Jiena growing up and not being able to marry someone just because their family is afraid of their FA. I feel strongly that it's time for change and now is the perfect time for it.

Anyway, if you are or know anyone who is Hmong and has any kind of special healthcare need, be it food allergies or eczema to diabetes to genetic/chromosomal disorders, I want to help make navigating this crazy world an easier one so let them know about Hmong Helping Hands! Right now, we are only on facebook, but hope to expand soon. We just got sponsorship through Arc Greater Twin Cities and Saint Paul Public Schools and will be having our very first discussion on Wednesday, Nov 5th, from 5:30-7:30 at Phalen Lake Hmong Studies Elementary School! I really hope we get a good turnout! I KNOW there are other families like mine out there and I KNOW it's not easy having one foot in American/Western medicine and one foot in Hmong traditions so I really hope they will accept my trying to reach them. Please let other Hmong families know about our event! I'm so excited and can't wait to meet everyone!

Here is the link to the event:
https://www.facebook.com/events/783756671692297/?ref_dashboard_filter=upcoming

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Comments

2 Comments

leona hensel
By leona hensel
I'm glad both of the kids are really doing fairly well. I've been praying for them and thinking about them. What is hmong . Unfortunately , many people in today's society even if they're educated about special needs children/people, don't really seem to care. I can't tell you how many times I've gone to public bathrooms and there's only one handicapped bathroom to three or four regulars and these people who are perfectly fine will use the handicapped one. I've actually told them how rude they were when that's the only one that a disabled person can use and they act like so what who cares and what's your problem. I'll pray that your organization will be a success.. Let me know how that gluten free diet goes with the hypothyroidism because I have that. I'll be curious to find out. Keep me posted on their progress. Love and prayers always from your Illinois prayer team.
Angela Bedoya
By Angela Bedoya
Maly, thanks for the update! I'm glad to hear that things are going relatively well.

I think it's absolutely wonderful what you and your friend are doing in your community! God has blessed you with some serious strength and determination. I hope and pray your endeavor is successful!

Love, hugs, and prayers,
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