Team Morgun

05/27/2020

With Eosinophilic Espphagitis awarness week ending I want to say thank you those who have donated in honor of Morgun. It means more than you know and it does make a difference since our funds are 100 percent to research of that much closer to finding a cure. Again we thank you all. Of you all can conrinue to share it does make a difference.

I dont own right to this music

COVID-19 Pandemic Curedfoundation.org

03/02/2016

Team Morgun Fundraiser 20% of sales go to medical fund. Come tonight to 693 nectar drive brentwood @ 7pm to check out the new spring line for thirty-one bags. If can not attend please order below. Any questions message me.

https://www.mythirtyone.com/493457/shop/Party/EventDetail/9024888

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02/23/2016

His eyes and head hurt so bad this is how he is sleeping. Also tongue is a strawberry we are thinking scarlett fever not sure, we have to call dr. Singer tomorrow. My guy is wiped out.

02/23/2016

Really was missing Dr. Singer today, had to go to Antioch to see a different dr and yeah well lets just say I didnt even get patient summary. It was check in with dr. Singer on friday. She did a strep culture but is letting it culture till wed? She was not sure what was wrong cause wait for it, he was playing on his pad. Lol yup he looks ok but if anyone knows my son he looks awful right now. Not sure if its his familiar mediteranean fever flare, or sickness.

We went to dr. And off course Morguns temp was 99.9 and within 5 min of us being home, he was complaining how cold he was, my dad saud he was burning up, he was 102.9 and within 10 min went to 103.9 , so cold compresses it was. He broke out in a red rash all over and just miserable, now he is a little more perky and we got it down to 102.0

This kid amazes me. So please pray for an easier night for him. This mom will be monitoring him all night.

02/03/2016

Well we have been up since 530am and just getting back to hotel. Im so exhausted. We had a productive day but lots of information. We have a lot to learn about Elhers Danlos and how its seriously affecting my active, busy little boy. We had 2 xrays done today on the ankle as well as numerous other exams. Morgun has Ligamentous laxity which basically means loose ligaments.

See with Ehlers-Danlos syndromes (EDS) have a genetic defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in patients with EDS are the result of faulty or reduced amounts of collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue. Its causes skin wounds to not heal, dental issues and gum disease, feeling dizzy and faint with headaches, brusing, and so much more. Basically morgun doesnt have much supporting his ankles and feet and its causing pain and swelling.

Yes Morgun looks normal, he runs, he plays, he plays sports, we dont want to take that away from him but we have to start putting restrictions on things, like jumping from high areas, no monkey bars, no physical cotact sports like football or like playing a position like catcher or pitcher on a baseball team, since its harsh on the joints, but he can be the best short stop ever. :) We have to get a new mattress so he is comfortable and his joints are okay. We also have to tell him no more jumping from his bunkbed ladder. This is all going to be an adjustment, but

I know we will eventually do it and it will be come our normal, but right now its breaking my heart. If we dont it leads to arthritis, osteoarthritis, and basically wheelchair bound if gets that bad. We found out the Headaches Morgun has been getting are from elhers danlos also. Its from posture and sitting and etc.. Morgun is 6 and yes we get the laughs of why is he in a stroller, he tires out and what normal people can handle walking a few blocks Morguns body doesnt allow it. Morgun pushes himself though cause he wants to be like everyone else, so we have lots to learn so we can intervene when he wont stop. We also were told today by his physical therapist that he is measuring tight with his muscles and ligaments and they are sending a prescription to an inhome indepentant physical therapist for him. Its alot to take in. They want me to ask the special education department if there is any recommadations of a good pt that will do home vists. They also gave us the stroller prescription and we will have someone out to our house on feb 9th at 4pm.

Well then we talked about the urology issues on his ge****ls and dr. Grom is not sure if its truly from the behcets. See morgun has familiar mediteranean fever syndrome and its linked with behcets. He shows signs of both. Morgun is on a medicine that keeps the inflammation down. We are running some labs and a urinalysis. We also meet up with one of the best urology Drs in the nation tomorrow. So him and Dr Grom will be hand and hand with this. We have had trace blood in the past in his urinalysis test and his creatine levels have been off and recently his bladder showed some residual urine which is voiding. so we want to make sure there is no amoyldosis going on. The disease he has can cause buildup of amyloid proteins in the heart, kidneys, liver, or other organs. So we wait and see what the blood work looks like and tomorrow we will have an ultrasound done of the bladder and kidneys.

Im overwhelmed but we are in the best place for help, and its nothing we wont get threw together and with all my support I have. Right now Morgun is exhausted and freaking out with the lighting and thunderstorm, if u all know my son he is one brave boy but freaks out bad with thunder and he shakes and gets anxiety. So headphones and netflixes on mommies computer it is. Im going to take a bath and soak all this knowledge in and reasearch and read the 32 pages of information I was sent home with today. Tomorrow is another day and we will go into it with open eyes and more learning. Thank you all who have been texting, calling, fb or whatever it is. It means the world to us. Love you all Team Morgun. We will carry on with the Lord guiding us.

02/01/2016

Today was rough for us. Insides are a mess, inflammation, redness and bumps now we wait to see if its eos which means would have to pull his foods and heal him, or its major reflux which means his prevacid isnt working anymore. So we will know more on thursday. Feeling defeated and hating eos.

02/01/2016

Well home sweet home for the week in good ol ohio. What a long day, we arrived at a out 615pm ohio time and what a long long day. My poor baby leg and ankle and foot again was acting up, and alot of it this time was due to 2 plane rides and an hour car drive. You couldnt even see his toes. He was in such pain, as I was checking into hotel he sat in the stroller putting his head in his blanket in tears. I felt horrible for him. He is now laying down elevating with pillows as I am getting us all onpacked and cooking dinner in the kitchen. It will be off to bed soon. We are drained been up since 330am cali time. Tomorrow Morgun undergoes his 31st sedation at age 6 and it never gets easier. This trip has showed me how truly blessed I am to have my mom normally with me, its only day one and I am wiped out. Missing her but its what we do. My heart is heavy though with what tomorrow will bring, I know its not in my hands and I know God has a plan, but its not easy. I pray tomorrow we dont have to pull one of gunnys 4 foods he has. I know the lord was with me all day today, getting me thru the airports and navaigating everything. There was even help right there waiting for me to get my lugguage. I didnt stress at all cause I prayed and left it in his hands. Security frazzled me, but I just took a deep breath and knew I had his strength. Lets just say I was patted down for some applejuice. Lmao. So tomorrow if anyone wants please wear your team Morgun shirt, to know u are thinking of him and praying. Please post a picture if u can so it will cheer him up!! As u can see he is comtent playing. Love u all.

11/12/2015

Well I hate the update that I have to report today! I know that we had so many Team Morgun supporters praying and hoping this would be a Pass. My heart is sad, and it never gets any easier with this disease. This disease has shown our family what is honestly important in life, as for one min, in life everything is great and the next min, you are dealing with circumstances that you never thought you would come to again. For over 6 months Morgun was able to eat 3 wheat products and today, Morgun meet with Dr. Putnam to find out that he has Active Disease again, Meaning the Eosinophil's have taken over and attacking his GI Tract. This means that wheat has to go. He did show inflammation in the lower tract of the stomach and if he still shows symptoms of stomachaches from now until 6 weeks out than we know that another one of his foods could be changing and becoming bad. We are praying that within these 6 weeks his poor little body can heal so he is able to keep the 4 foods he has and oh 5 would be ketchup. lol So for now we are back on 24 ounces of formula and then the 4 foods he has are Rice, Strawberries, Pork and apples.

We need to let his little system heal and take time. we do not have many food options left, due to us failing them all, we have peanuts, and egg, and that will have to be done in a clinic with Dr. Sue back home, where they do it in house to make sure he does not react. I'm not sure how I feel yet about that, due to him being so allergic as a baby. So its a scary one to me. My gut is saying peanuts over egg more, but we will see. We have some time to discuss this with the allergist and figure out what to do next.

We have not had a call back yet from Dr. Spar our cardiologist so we wait for those results as well. Hoping that the narrowing of the valves are still all right and nothing has changed or that nothing is leaking. We are getting ready, to head to Dr. Grom for Rheumatology and then after that we have Physical Therapy. We still have a long day. After all our appts, we then have to drive over and hour to Columbus and spend the night for us to fly home tomorrow morning.

We will keep you all updated and again thank you for all the calls, emails, messages and texts. I love you all and Team Morgun supporters are more than amazing. For now we stay positive and help Morgun threw this tough transition. It will be tough next week going back to school and not having some of the foods that he had with wheat were he felt NORMAL. I know with the staff and the support he has we will get through this all together. God has blessed us and this little boy with the greatest support team ever. Love you all and will update in a few hours.

11/10/2015

Morgun did great yesterday, we have a little redness with some inflamation in certain areas. So we wait for biopsy. We will know on thursday when we see Dr. Putnam. Below are some pics we took at the procedure. My hero.

11/09/2015

My heart is warmed by some of my Friends who I love and adore who have supported me and this journey from day one and they never turned there back on us. I love them more than words can say. You all know who you are out there. I wish I could do more, But just know that you will always hold a special part in this journey. This is all blogged and Gunny will always know now and when he is older, who was there and who made a difference in his life. He is doing well because of you all who have supported us to come out here and get the best treatment ever. I'm proud to announce that again Children's Cincinnati Hospital Ohio has ranked number 3 best hospital in the Nation. It also just ranked Number 1 best in the nation for Pulmonology/ Cystic Fibrosis and ranked Number 2 best hospital in the nation for Pediatric Cancers with one of the best Cancer Centers. We truly are amazingly blessed to be where we are at for this little man. Thank you again To Amazing Team Morgun supporters, We cant wait to see the love and support and pictures today of Our shirts and Purple. I would like to make a video so please tag us in your photos.

11/08/2015

So tomorrow this little guy will be starting a week long of his appts. Please Team Morgun supporters wear your Team Morgun shirts and if dont have one please wear purple or periwinkle color. Post your pictures to our fb page and show Morgun your support. He hates he is missing school, so thought this could cheer him up! We have a long week so today we are resting and preparing for our new journey this week. Prayers, and positive thoughts are needed. We hope to find out we passes wheat and be part of that 1 percent. Please share and pass this along. If anyone would like to help support Morgun and Finding a cure please go to http://curedfoundation.org and make a $1.00 donation in his name. Lets get $100.00 donated to cured! 100 percent of the donation goes to cured for a cure. No middle man.

CURED is a not for profit foundation dedicated to those suffering from Eosinophilic Gastrointestinal Diseases (EGID), including eosinophilic esophagitis (EoE), eosinophilic gastritis (EG), eosinophilic colitis (EC) and other eosinophilic disorders.