It’s been awhile since I’ve written an update, but as I mentioned last time I’m posting mainly on YouTube now. The link to my channel will be at the bottom if you are interested. For once I have some GOOD NEWS! As always it will be a long post because its been several months and well… my life is crazy!

I do have a few not so great things that have happened so lets get those out of the way first. As you know I have a feeding tube in my abdomen called a GJ tube. I have had that for seven months and that is how I get fed. I have had SOOO much trouble with my tube but I am not going to recap all that, you can check out my last post for those details. right after I got the tube replaced after the last incident which required emergency surgery, within 3 weeks it broke. YES IT BROKE!!! I swear I have terrible luck! But I was so stubborn because I’ve had to have it changed so many times I refused to do it again so soon. So I literally TAPED the tube up for 2 months. This caused lots of leaking and waking up in the middle of the night covered in formula and intestinal bile. Yep, its about as much fun as it sounds!  After 2 months I gave up, I had to get it changed. In the past they’ve done it surgically so I was asleep. This time however, I was going to be awake in the radiology department. So the day we got it changed was super easy! I was very nervous due to PTSD (I am going to be making a whole blog post about that today too, so it might already be posted when you’re reading this) so they gave me nitrous oxide or laughing gas and the procedure took a grand total of 14 minutes! Super fast, painful but not terrible, and I went home right after.

Unfortunately it seems like nothing ever just goes perfect, theres always a catch. Only 5 days later the ballon holding the tube in place popped and the tube started sliding out of me! I had to push it back in which was very painful! So that meant it had to be changed again. I had to tape up my stomach and pretty much not move until they could change it 3 days later. Luckily that change was even quicker! And I am happy to say its been several weeks and I still have a perfect tube, so thank God for that! We all prayed seriously hard that this one would stay functional for a very long time!

Now for the good news! I was nominated to be a recipient of the Tim Oath Memorial Foundation this year. They hold a fundraiser and the money is split between the recipient kids to put towards medical bills, equipment, or whatever they need. That fundraiser was last night and it was amazing! I made art for the silent auction and it was going so fast! Everyone loved it, which made me so happy. When I got sick and all I did was lay in bed, I spent hours and hours on art to finally feel like I could accomplish something again. Looks like all those hours paid off! I met so many kind people through TOMF and I want to thank everyone who came and donated. You are truly changing lives for the better. For me the money is being put towards an adjustable bed. One where the knees go up and the head of the bed sits up. I spend most of my time in bed and with my bad joints this is going to be amazing! I dislocate both hips when I sleep but it helps to lay with my knees up so hopefully it will help that along with easing pain while sleeping. We are so grateful for TOMF and everything they are doing for us.

We have been trying to get me back on the Growth Hormone shots I took for 10 years as a little kid. They always helped my muscles be stronger then and when I came off them my body got way weaker and my joints got worse rapidly and haven’t stopped since. my hormone levels were also severely low so those need the medication as well. The hope is that by going back on GH shots that I can build more muscle and get my joints a little stronger again. Which could reduce some of my severe daily pain. Its in no way going to fix me or make be completely better but right now I can’t build muscle without injuring myself, thats how damaged my body is. But if I could just get a LITTLE stronger it could help stop that decline in my joints, and protect the few that are still “decent”. I say decent because they all aren’t great but some are still functional compared to ones that are permanently dislocated and hanging. Yes, I do have joints literally hanging. So in order to get back on shots it takes a long time. We’ve been going through the process for many months. We had the testing redone, we filed the appeal and have begun fighting with insurance etc. but after many months the meds showed up on our porch! We had no idea they were coming as we’d never heard anything from the doctor, but either way we all did a mini freakout happy dance! That was at the very end of January by the way, So I’ve been on shots for about 2 months. This is hopefully just another step in the right direction!

The biggest improvement we’ve made since I last updated is the new plan for my pain. I dislocate over 30 joints every single day. My body is so fragile I tear tendons and muscles frequently, I wake up injured in the morning with no idea how I got hurt. I get specific “hip pains” that are so excruciating they leave me crying unable to really get out of bed. For those instances I have strong pain meds to help but I am not someone who likes taking those. I wait until its unbearable because they make me so sleepy then I can’t do anything anyways. So awhile back when we were trying to figure out what was wrong with my tube (the time I needed emergency surgery), my doctor prescribed a pain med to try and help. But it was a much milder pain med than the ones I had at home. It worked so so well without the negative effects of narcotics! We talked to my pain doctor at our next appointment and told her about this new medication. Like I said before I had strong meds at home but rarely used them because of side effects and the fact that those were for unbearable pain not just my daily pain. But as we Talked with her we came to the conclusion that I don’t have any quality of life right now. I lay in bed all day because of pain, which makes my body weaker, which makes my joints worse, which causes more pain, and its an endless cycle! In order to stop that cycle I need to be able to get up and move more and get stronger. So with this new medication called Tramadol which is a very mild narcotic I was able to function! It doesnt make you dizzy or drowsy like the other ones I take, and it doesn’t make you confused, I feel normal other than being in less pain. We originally just hoped she’d switch my meds to these instead of strong ones for my pain episodes but she wanted it to be a daily med. We needed to get pain under control so I can get stronger and help my pain get better and this was there perfect medication to do just that.

Its been about 2-3 months since I started that and it was life changing! I was in severe pain all day every day and suddenly I wasn’t in pain all day! I’ll say that again. I’M NOT IN PAIN ALL THE TIME!!!!! It had been YEARS!!!! Just ask my family how many times I cried happy tears. We ALL cried happy tears at the fact that I have a quality of life again. Im 17 and its not fair to live like a bed bound 80 year old hobbling around the house groaning in pain! I was instantly able to start doing more. I still spend a lot of time in bed but I’m able to walk more, do more physical therapy, I even started pool therapy!! I get out of the house so much more and I can actually just breathe a sigh of relief! So when I’m out of the house and people come up to me and ask me how I’m doing? For once I can tell them “I’m good” and mean it. I don’t know about you but that is a really big deal to me.

Lastly I have been doing a lot more with my Youtube channel and it is really taking off! I am at over 22,500 subscribers and over 1.6 million views collectively! How amazing is that! YouTube has given me a voice and I am using that to spread hope and positivity to others. I get asked how I’m so positive and the answer is my hope and trust in God. I always knew he had a reason for this suffering, but I now believe its because he is going to use me and use my pain to reach others. Im currently working on filming my testimony to share. God has changed my life so much and I know others need to hear that too. If I could only tell others suffering (illness or not) that this pain isn’t meaningless, your life isn’t over, there is immense stregth and joy found in the Lord. Far greater than any pain on earth. Not to say that life is all butterflies and rainbows when you trust God OH NO! But he gives you the strength to get through it, the hope that one day this pain will end or it will get better, and lastly the Joy in life despite the pain. So I will continue to use this platform he has given me, and its not just sharing my faith. I post fun videos, I share about my different health conditions and explain them, every surgery I have or hospital stay is filmed. Obviously not the surgery itself but I film some of my time in the hospital so others can really understand what I go through, or if they are going to be going through that they can know what to expect. My channel is called Life with Stripes (like zebra stripes, the zebra is the EDS mascot). I also made a Facebook account for those who don’t have Instagram. That way I can let all of you know when I post a new video. Here is those links.

Youtube channel >  http://www.youtube.com/lifewithstripes

Facebook Page >  https://www.facebook.com/mickey.sorensen.545

Anyways I know this was a REALLY long post but most of it was good, so theres that! Thank you guys so much for taking the time to read this and for supporting me. I couldn’t do it with out all of you. So many people ask what they can do to help and there are a few things! PRAY! Thats the biggest one! I believe in the power of prayer and the more the better. Also, if you see me out or at church or something, come say hi! It makes me so happy when I get to talk and even pray with you guys. If you read all this then wow, I applaud you 🙂 Thanks again for all the support. I don’t know when i’ll post again but if I’m quiet on here, there is usually updates on YouTube. I hope things start improving with all these new changes but either way I will fight on, and I’ll do it with a smile on my face AND JOY IN MY HEART!!  (most days anyway 😉 I’m human)

Its been several months since I have made an update. So much has been going on I just haven’t found the time to write this. Before I fill you in on what’s been going on I wanted to let you know that if you would like more frequent updates you can check out my YouTube channel! I started making videos to raise awareness for my different conditions and we are almost to 3000 subscribers. Thats crazy! I never thought so many people would be interested in watching my videos. So while I will continue to write Blog posts when I can, YouTube is the main platform I’m using to share my story right now.

So now for the long overdue update! Last time I posted I was about to get my surgical GJ feeding tube placed. This was a feeding tube that is placed surgically into my abdomen rather than the one that goes through the nose. I was also having a port placed for my infusions as my PICC line was only temporary. On September 18th I had that surgery. That was the hardest thing I’ve ever been through. When I woke up I was given pain meds that my body doesn’t handle well and I burn through them before they even start helping. By the time I was taken back to my hospital room I was in unbearable pain. I spent the next few hours literally screaming in pain waiting for them to give me any sort of pain medication. You can imagine how painful it was when I woke up and had just had a whole put into my abdomen that now had a very large tube through it. It was excruciating!!!! That combined with my port that was placed in my chest was more pain than I’ve ever felt In my life. It didn’t end there unfortunately. I developed an infection which left me in the hospital for 8 days. Once I was at home it took me over a month to start feeling myself again.

The tube they give you when you first have surgery is VERY big and bulky. With EDS your tissues are very delicate and this tube caused constant pain because it was too big. Luckily after 2 months you get what’s called a button. It is a much smaller tube and is supposed to be much more comfortable! It was for a few weeks and then I started having pain. Around the tube began to swell and get hard to the touch. They couldn’t find anything wrong at the time so we just assumed it was normal. I mean after all, your stomach isn’t meant to have a hole in it! Over the next few weeks the pain became much worse. The day after Christmas we knew something was wrong. My tube wasn’t working and I was in horrible pain. We went to the ER at Children’s and they admitted me for testing. The next morning I had surgery to fix my tube. It had gotten stuck in my stomachs wall and my stomach lining swelled around it. The lining of my stomach was twice as thick as it should been. They took out my button and put in another long tube. lucking it is a nice one, unlike my first long tube after surgery. I started to improve quickly and now my feeding tube is feeling better than ever! While this tube has been a huge pain it has kept me alive now for 6 months and we’ve seen drastic improvement.

During all of this my hip has been declining. I actually had some procedures done on my hip during my port and feeding tube surgery in September. We have been trying everything to figure out whats wrong and why it’s hurting so much. We’ve done PT, injections, an MRI and the results… we can’t find anything. Unfortunately this means there is nothing they can do to make it better, so for now I’m stuck with it. All of my joints are still giving me trouble and I’ve had a few injuries here and there but for the most part they’re staying stable.

Going through all of this is hard. Living everyday in constant pain, dislocating 30-40 joints a day, not being able to eat much, needing a wheelchair, feeding tubes, and IVs is hard! But its made me so much stronger and changed the way I view things. I appreciate the little things I can do. I’ve grown so much closer to my family. My relationship with God has grown more than I can put into words. While I don’t know why He gave me these challenges I know that its for a reason. And I can chose to either be upset about it or embrace it and trust God with whatever comes next. And thats exactly what I’ve done.

I have several tests and appointments coming up that I would appreciate prayers for. We are working to get me back on Growth Hormone shots, so we have a GH stimulation test this month. This will also help rule out adrenal insufficiency which we have been wondering whether or not I have for over a year. We are also trying to find ways to manage my pain and give me a better quality of life. There is so much more but it would take me forever to write it all out.

People always ask us what they can do to help and the answer is just pray! God is incredible and I believe in the power of prayer. Thank you again to everyone who has been supporting me and my family though all of this. We appreciate you all so much. It is wonderful to know that so many people are praying for me and are here to support us.

Check out my YouTube channel for more updates- http://www.youtube.com/lifewithstripes

 

`Its been about six weeks since I got my feeding tube placed. The goal for the tube was to stabilize by blood sugar and regulate my weight and nutrition. I have a very hard time doing this myself due to my Gastroparesis, which is partial paralysis of the stomach. This causes anything I eat to sit in my stomach for much longer than it should causing a variety of unpleasant symptoms. The tube however bypasses my stomach and sits in my small intestine which means less pain and nausea!

Currently I have whats called an NJ tube or NasoJejunal tube. It is a temporary tube that goes up the nose, down my throat, past my stomach and into my jejunum (a part of the small intestine). I’ve made lots of progress since the tube was placed! I’ve started gaining back some of the weight I’ve lost, and my blood sugar is much more stable. Not perfect, I still get the occasional low, but so much better overall! After almost a year of poor nutrition I am finally getting some energy and strength back, which feels amazing!

While all of this is good, it took awhile to get here. The first two weeks with my tube were the hardest. Not only did I have to get used to a tube irritating my nose and throat, but we had a VERY hard time getting the tube to run properly at home. I left the hospital off to a good start. So far no issues with the tube and I was feeling ok-ish. Once we got home we started my new formula which was called Liquid Hope. Its a real food blend so there’s no hit fructose corn syrup, dairy, sugar, vegetable oil and artificially made vitamins. Yes those are the main ingredients of most formulas! Unfortunately this means that the formula is much thicker than normal, but it still has to go through a VERY thin long tube. This caused so many clogs and for about a week all we did was unclog my tube 3+ times an hour. Day and night. The pressure would get so high the tubing would burst inside my pump causing a huge mess to clean up. In the first two weeks I got maybe half the amount of nutrition I needed. At this point we switched formulas to another real food blend that was much thinner called Kate Farms core essentials. From then on things just kept improving! I’ve been on it for about a month now and have had no serious issues!

After seeing the improvement I’ve made, we decided that a permanent solution would be best. We are meeting with my GI doctor this Thursday to sort out having a permanent feeding tube surgically placed through my abdomen. This will be much more comfortable and be underneath my shirt where its no longer visible, unlike my NJ which draws quite a bit of attention on my face 🙂 We also are planning to place a Port-a-cath or Port at the same time. This would take the place of my PICC line as a permanent IV access line. Bye Patrick (PICC line) it was a good 8 months!

With all of this happening its been a pretty hectic summer but I finally feel like we are getting to a more stable point. Just in time for homeschool to start back up! I am now in my third week of 11th grade. Last year I wasn’t really able to keep up with my work. As you can imagine when your brain is deprived of nutrients its very hard to concentrate to get work done. With the tube however, I am off to a great start. I have consistently completed all of my work so far. Its only been two weeks but compared to last year where I would maybe get three days of work done a week, I’m calling it a success.

I will do my best to keep everyone updated on the plans for surgery. Thank you to everyone who has been praying for us during this hard time. We truly appreciate all the prayers and support.

 

“And the prayer offered in faith will make the sick person well; the Lord will raise them up.” James 5:15

I realize I haven’t updated since March, things have been a little crazy! We have made some progress in figuring out my health, and in some areas I have actually improved! As you can imagine there is quite a bit to update on so here we go.

Last month I got my custom wheelchair and it is amazing! It’s lightweight, easy to get in and out of the car, and I can actually push it myself! In my old chair I had to be pushed so let me tell you, the feeling of just a little independence is incredible. It even has a SmartDrive attached, so it propels itself and all I have to do is steer. This means less work on my shoulders.

My PICC line has been in for 6 months, and is still working beautifully. I am still receiving  home IV infusions twice a week and those have helped me be able to go outside for short periods of time this summer. I have been spending that time going for short walks trying to get some strength back, and it’s working! My joints are in no way perfect, I still dislocate about 20+ joints everyday, but my injuries have decreased! I have even been allowed to reduce my Physical Therapy to once a week rather than twice. After over a year of doing both, it feels nice to gain an extra day of the week with no appointments.

This past weekend was the annual MAGIC Foundations convention in Chicago. We have been going almost every year since I was around five years old. Every year I meet up with a MAGIC friend of mine and it is always great to see her. We all agree this was the most helpful convention we’ve been to. Every year doctors fly from all over the world to speak on different medical related topics. We are slowly going through the process of getting me back on growth hormone shots. These will hopefully regulate my blood sugar as it is constantly too low, and help me build more muscle. We were able to talk to a lot of people and learn more about my condition. When we got home we shared this information with my team of doctors and we all agreed that something had to be done. Due to my gastroparesis I haven’t been able to get adequate nutrition since last year, and my blood sugars are dropping too low too often and it is getting to a dangerous point. We agreed the best course of action is a feeding tube. I am being admitted to Children’s Hospital tomorrow morning to have a Nasojejunal tube or NJ tube placed. This will feed me slowly 24 hours of the day so my blood sugar won’t drop. The tube will bypass my stomach and sit in my small intestine which hopefully means no pain or nausea. I will still be able to eat what I can by mouth but it will make up for the calories and nutrients that I cannot get myself. The plan is to be admitted for a few days and hopefully come home on Friday. Unfortunately camp starts on Sunday so depending on how I’m feeling I may have to stay home. I would appreciate prayers for this hospital stay to go well and for it to be short but helpful. I am going to take it one day at a time and let God deal with the details, I’m just along for the ride 😉

 

Jeremiah 29:11 “For I know the plans I have for you,” declares the Lord “plans to prosper you and not to harm you, plans to give you hope and a future.”

Holding on tight….. thats what I’ve been doing for the past month. Not gonna lie this past month has been rough. There were lots of times where I felt like I was going to drown and the only thing that kept me up was the support of my family. Let me back up a bit, in my last post I said that I had some important doctors appointments coming up. I had one appointment that went great! And one that went not so great. I met with a new Neurologist and it was a long but very beneficial appointment! She believes that she can help me get my POTS managed better. She gave me lots things to do between now and the next time I see her. I got compression socks, I started a new medicine for my dizziness, I started exercising in a way that is safe for me, and so much more. It is nice to feel like there is something that I can do that might actually change the way I’m feeling for the better.

Now for the not so great appointment. Tests confirmed that my stomach has gotten MUCH worse. My stomach can no longer handle any solid food. Getting calories in was a real struggle. If you want to know what I look like on 400 calories a day just picture a bear being woken up from hibernation… I wasn’t the most pleasant person to be with. I met with my GI and unfortunately there isn’t much we can do right now which really frustrated me. I had many low days where I felt very discouraged, But my family held me up through every dark day.

I am now getting about 1000 calories a day and I have some of my sparkle back. Things are still very hard and I struggle to get each any every one of those calories, but I have the fight back in me to try. I got so tired of fighting so hard but my will is back and stronger than its been in a long time.

Other updates, I have mentioned before that I am in the process of getting a service dog. The litter of dogs that my potential match is in gets back for final training in about a week! Hopefully if all goes well I can meet him/her and begin training. I also registered for a summer camp for kids with juvenile arthritis and Ehlers Danlos Syndrome. It is a 6 day camp and am so excited! I will meet other teens my age fighting very similar battles and I’m hoping to make some friends that I can really relate to.

After a long and hard month I am glad to say things are looking up. But even in the darkest of days God showed up in some amazing ways. One of the days that was really hard for me we went to the night of worship at church. We got there right as they played the last song. It happened to be my current favorite song that when I am listening to it I feel so encouraged. I can’t help but feel like God played that song for me that night. The song is called Deeper by Meredith Andrews. I will leave a link to the song and I encourage you to listen to the words because they are powerful. I will also leave a link another song which I have been listening to a lot. It feels like that song speaks right to my circumstances and gives me so much hope.

I thank you all for your prayers and I ask that you continue to pray. I believe that prayers make a difference. I have more appointments coming up and I ask that you would pray with us that they go well.

“And the prayer offered in faith will make the sick person well; the Lord will raise them up” James 5:15