Gastroparesis

My first hand personal expeiriences with gastroparesis.

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Gastroparieis has been a diagonses for me for the past 5 years. When I started Mommies Quiet Place (This website) I was just diagonsed and bed rested because I would wake up in the middle of the night in major pains under my ribs and I would vomit and puke so badly I would chocke in my sleep. I seem to have mastered the diet plan of gasteroparies suggested by the dr who treated me was to eat soft bland mushy foods basically anything given in a old age home to older people I am okay with digetsting foods. Gasteroparies is an inablity to digest foods properly. I foods stay in my stomach for 3 hours at a time sometimes just sitting there not moving along the digestive track. I have over the years blogged about the treatments and such experiments from smoothies I had a popular smoothie that I posted I dubbed the poop smoothie till this day a lot of people try looking it up I see the search term for it on my website. I took it down because a lot of people like to take off with the topics I write about as ideas for their own and although flattering it sucks becuase I would much rather the post be shared, liked or commented not just talked about among others in a private chat group as I've found. I had a different name and discovered things being said and found out that people were jealous of my illness of how it effects me of how I cope and manage to come across as being together. I really am not put together, things overhwilmed me as much as the next person infact sometimes more so and it's a daily struggle sometimes to force myself out of bed but I do it daily at 6 am and movicate my mini me out the door to the shcool bus. I am loosing my teeth from the acid and it does not matter if I eat how the doctor suggest or not it just is a slow painful natural part of this process because I didn't have the insurance to deal with any of the issues that was minor because I was focued on the major issues that my daughter was having. Now at 36 I am taking care of me fully living life having a social life, doing things for myself and even taking the time to connect with support group out side of the house so I wasn't alone. it's nice to know you are not alone and that is why I keep this blog up not for my glory or to even get credit but it would be nice for others to give credit where it is due. So often clinics start to watch bella and I for years and follow up on us because we are a rare few who have Digeorge and other issues that go alone with things not typical to digeorge. My daughter has a mild form of cp and I have gastroparises. Together that makes life intersting. Today I went to the dentist and I have a tooth infection I am on antibotics and then next friday I will have my tooth pulled out. I have done all that I could but at this point it's a loss cause. I have been working out going to the gym and working on body building repairing my muscles in my legs I can leg press 115 pounds. My arms I can only lift 10 lb. I run 2 miles daily for the past 8 days and I haven't thrown up I also haven't had much time to eat excess foods. I eat dinner with family and then out the door I go to work out. I'm still trying to find that life balance house is falling apart all around me and soon Adam will start his new position and I need to sit and figure things out and how I am going to manage it all. Bella has been a handful she's turned into a teenager she will be 12 April 27 and she is getting rather mouthy some days at bed time and in the am. The trigger times of the day where not to many people see the adhd issues unless they come into the home and see it all in action. To the outside blogging world people become jealous I am married with a kid and have a happy normal existance in their minds. I learned not to explaim mysel fto anyone. People form the foundation assume that I don't have mamy issues and I let them think that if they want to know I have my website where I share about most of the stuff I have gone though. I am done with writing my book. It's in draft form and I'm just not sure if I want a publisher to get credit where it's not due or to sell it as a ebook and others get credit where it's not due by them selling copy's of it marking it up or down. Publishing is challanging and I'm not sure I'm ready to deal with that world. I think I might just stick to publishing on my blog. If I find the right publisher some day I will know if that happens but I never step out to do this blog to earn a dollar off the syndrome. Infact my readers have helped my daughter get to top earner for her school which I am so excitef for her they had her come up during march's reading month and she was so excited and a litle emotional. I love seeing her many emotions I'm reminded to be thankful for her spunk and zest for life and determination. With that she's inspired so many others. I have showned her that along with my husband. 14 years together and bella being 12 now I have been coming into contact with a lot of others from the past often reminded of how far I have come. Thanks so much for reading and the support.

How to handle doctors visits with special needs kids like a boss! or our trip to U of M

 Hello everyone,

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I am going to dive right into this one as I am excited to share the news.

 The reason for the doctors visit is Bella has 80% hypers-nasal speech means when she speaks air goes up her nose is what the test showed at the last doctors visit.  

In Aug, in fact, we were scheduled to go ahead and correct this issue she has with air by fat graphing which involves fat from some part of Bella (I wasn't sure where they were going to find any fat on her)  I was wondering if we should wait it out until she passes puberty or just go ahead and do it now and get it over with.

The speech doctor at the clinic had to perform her speech test on Bella by asking Bella to say funny sounding sentences. Bella had to say words while pinching her nose, followed by the breath o her breathing on(magic mirror thing a ma jigger) I am not sure what it was called but it goes under Bellas' nose and you can tell if there is air in the mirror if it clouds up or not. Bella had no air on the mirror this time.  Last time the mirror was all cloudy.

Bella then had to sit with a fun looking space helmet on her head and speak into a sensor while she said the same funny worded sentences. Bella scored a perfect normal on the test. 4 times. Normal from 80% is something only short of a Miracle.

I don't even think it sunk in yet. Bella was thrilled and thankful that Bella did not have to have a camera go down her nose into the back of her throat.   It was a shock to both of us no surgery needed  Bella will go back for a team visit soon as they can fit us in to talk to the team about our next treatment plans.

Below is some info on what Velopharyngeal or for short Vpi is

 

 

 

 

 

Bella playing in the play area on the 8th floor after to burn off her energy before we headed home

 

I know I asked all of you to visit my website to hear about this trip because it is such great news it was difficult to talk to 100 different people and I can not keep up with that many questions. If you do have any questions feel free to leave a comment on the blog in the comment section below. 

Thank you for reading. Bella looks forward to seeing your likes, comments, and shares and she said she is super excited she does not have to have surgery.  Bella is a 10-year-old girl with 22q and cerebral palsy. I am a mom who also has 22q. This is our journey and I am sharing to help others out there not feel so alone.   Don't forget if you like it subscribe (Purple button top right of the homepage)

Until next time take one second at a time.