We had appointments for both Livy and Sophie today. We were left reeling. Livy, little miracle, has shot from not even being ON the growth chart to being at the 47th % for height and 42% for weight. Words can't describe how GOOD that feels. We are WINNING the fight against failure to thrive. Thank God!
We still don't have answers though, so that part of the fight's not over. We will be taking Livy back to a Sleep doctor for her sleep issues, which haven't improved at all. We are TIRED. She's also showing some symptoms like last fall, so we are keeping a close eye on her, especially since she's dropped 1.5 lbs in the last month or so and is having quite a bit of stomach pain.
Make your pizza & dress up!
Baking cupcakes...or...making a huge mess. :-)
Her two GI's were telling us different things, so our PCP decided we shouldn't focus on moving away from the tube since it makes her sick to push food. She still greatly needs every bit of nutrition she gets from her tube and the last thing we want is for her to be afraid of the dinner table/food again. Our PCP told us to follow our gut and do what we think is best. That is such a good feeling, to know she has faith in us and it reminds us to listen to what our hearts and minds are telling us. We know our baby and that's important. I also had a nurse pull me aside to tell me what great a great mother I was, what great parents we are and how God knew we could handle this journey. I wish I could tell that nurse how much her words meant to me, how much they touched me.
Ready for a Cowgirl Bday party in outfits I made. Couldn't find the iron, so I used the stove top and a saute pan. Oh my. It might have taken all night (including a midnight trip to Walmart) but I got 3 outfits made in one night. ~made one for my niece Eva too.
Feeding therapy is up in the air. Our PCP is looking into a few options, but also wants to stay focused on what's causing the problems vs moving away from the tube. Both would be great, but we need to do it in the right order and without causing any further issues for Livy. She's putting in another referral to WI Children's down in Milwaukee as they have a great Peds GI Motility program, where maybe we could get answers that have eluded us so far.
The Bad: Sophie Grace....oh, this is tough. We've noticed her legs sometimes look a little...off. But let me tell you, our Sophie is always moving. And not walking, not running. She's moving at the speed of light. Getting a good look is tough. My Mom mentioned something a couple months ago and I've been watching since. But I didn't want to jump on it too quickly or seem like the Mom that see's danger in every corner. Or in my case, a special need in every child.
Swinging and HAPPY!
I've been doing gymnastics at home with the girls and was teaching headstands for fun. This is when I really saw how bad Sophie’s legs had gotten. Her knee's literally CROSS and she can't get her legs strait. Plus, her right leg was longer than her left. I called Troy to come and look hoping I was just seeing things. He looked so scared when he saw what I was pointing out. The next day, first thing, we had an appointment scheduled with our PCP.
Cowgirl, Sophie style. Goofy!
It was a short visit for Sophie. Our PCP quickly said something is really wrong. Sophie’s legs are extremely bent outwards, one leg is shorter and she's not walking right. Our PCP said she'd look to see who the best Pediatric Orthopedic Surgeon is and set up a referral. Have I mentioned lately that I LOVE our PCP?!
Today we found out we have two children, both with heath problems, with special needs. We are sad, frustrated and struggling with blame and fear. Livy is so....stalwart. Adult. Serious and brave. Sophie is brave, but more a jumping off tables kind of brave. She's our baby, our over-active little cuddle bug. She cries easily and gets frustrated quickly. We can't picture her in KAFP braces (Knee-Ankle-Foot Prosthetic) or recovering from surgery on both legs. She's our baby. Our youngest. She's our healthy child. Only now...she's not.
Most days, Troy and I feel like we are barely juggling the balls we have in the air. Today we had a new ball handed to us. Tonight, we both wonder how in the world we will manage this new ball. This life-changing (for now) ball. We are both sad and hurting for our baby, knowing she's going to have to go through a tough journey like our Livy Love has. We wonder if she'll change and how. Will she become more serious, quiet and medically interested as Livy? Will she become more patient or more frustrated? A lot is running through our heads, including why them?
Tomorrow will be a new day, hopefully an easier day. We will wait for answers...where we will take Sophie, which doctor will give us answers and what will happen. What this means for her future. And then we will make plans and move forward, doing the best we can for both our little girls.
Make your own Sundaes. NOT our best idea, but so much fun. I may or may not have enjoyed my sundae enough to do it again soon. ;)
Thank you all in advance for the love and prayers I know you'll send our Sophie Grace's way like you've done for Livy. Thank you for the support you all have and will offer Troy and I. We so greatly appreciate it and it will hold us up in the days to come, as we learn how to best guide two little girls through their own unique medical journeys. <3
We are struggling to create a 'new normal' in our home. One where Livy tries to eat, where she sleeps more (in her room!) and where we feel less like parents of a 'sick kid' and more like...parents. LOL Livy is SUCH a joy and her little sister Sophie is our wild child. They are so different, yet compliment each other so well. It's been wonderful to watch them get closer and closer during this long stretch we've had without hospitalizations ::knocks on wood::. This is the healthiest Livy's been for the longest stretch. It's...weird. Fun. Exciting. Scary. Happy. We look at Livy and can SEE the difference in her. In so, so many different ways. She has energy, like a toddler should. She's growing so fast we can't keep up with the clothes, lol. She has meat on her bones. Her Auntie Sam just commented this weekend how she has FAT on her thighs. It's glorious.
Even though it feels so GOOD right now, we are always waiting for the other shoe to drop. Waiting for the time she gets sick and doesn't pull out of it quickly. Waiting to go back to that scary, dark place we were in this winter. God, I pray that we never, ever go through that again. That Livy doesn't. That Sophie doesn't. But since we don't know WHY or WHAT caused it all..or WHY she got better, it's hard. Hard to say it won't happen again or we are doing the right things to prevent it. We just don't know.
We try to stay positive though and not focus on the 'what if's'. We are enjoying things we never have before with our girls. The biggest thing being...the LAKE! We've started waterproofing Livy's tube site during the spells she's allowed off during the day and Livy's going in the lake we live on. This summer, July, was the first time Livy had EVER been in our lake. She was SO HAPPY, as you can see above. So excited. And just look at her. That smile, her face spotted by sand, it beams with joy. And her legs aren't spindles. Proof that she's healing and growing and her formula/feeding tube is working. Proof that we are lucky, blessed and delighted parents. This isn't where we expected to be this summer. If you'd told me that I'd be taking this picture of Livy this winter I'd have thought you were being cruel. But we are so lucky and blessed that this is our reality right now.
We've had an amazing last few months with only limited symptoms as compared to what Livy was experiencing 6 months ago. We've had a few vomiting spells, occasional retching and semi-regular stomach pain. She still has awful leg pain regularly and it's getting worse, but for us, this summary is limited from what we are used to. She's not really eating by mouth. She'll snack a bit if she's off her feeding pump for a few hours but when she does eat, she simply can't get much in. Certainly not enough to sustain life. At this point, we are still giving her 100% nutrition through her tube. People see her and always assume she's 'better' and she's off her feeding pump. But the reality is that it's her feeding tube/pump that ARE making her better. For her, that little machine and those little cans are LIFE. And we are thankful!
As of right now, we are trying to do whatever we can to encourage oral eating. The pic above shows a particularly fun way of doing this...waffle topping fun! We had a TON of toppings and let the kids play and then hopefully eat. While they had FUN, Livy didn't really eat. But we are kinda ok with that, honestly. We have to be. For us, oral eating can't be the focus or we'd lose focus. We'd forget that LIFE is what's important. That our girl's happiness is. That being together, not in a hospital is. So, we do what we can to encourage eating. We have Livy (and Sophie, who's 2 now!) help cook, go to farmer's market's to learn about where food comes from and help us create meal plans to encourage her to eat. We also try and time breaks off her feeding pump for the hours before meal times so she has an empty tummy.
We haven't made much headway, but we are happy with what we've tried and Livy's acceptance of food. She's not eating it, but she enjoys being around it, so that's a big step.
Livy enjoying the sprinkler on a hot day!
We have a lot to face in the near future with Livy's health. As of right now, we are using the summer to save up as much $$ as we can since we know most of Livy's care will be out of state and feeding therapy can be multiple times a week. With our Dr's advice, we held off on feeding therapy for the summer as well as the other therapy's they'd mentioned. But with summer quickly coming to an end, we have a lot that we'll be doing with Livy.
Livy will be heading back to the sleep center at Mayo. She's not progressed as much as they'd hoped. While we are having a bit better luck GETTING her to sleep, she is disturbed often throughout the night and is very restless.
She will start feeding therapy. This I have mixed feelings about since she CAN and WILL eat, it just seems to get...stuck? Idk. But, I'm up for anything! I just hate the idea of multiple trips out of state on a weekly/monthly basis. Livy nor Sophie thrive when the family is split up. And ok, neither do I!
We are looking for a local chiropractor to see if that will help with her pain. We'll also be taking any referals/advice her primary can give us on pain management for Livy.
We want to try a blended diet for Livy this fall/winter and see if her body can digest a specially formulated blend of oils and maybe FOODS that will be finely blended up and put through her feeding tube. We'll be working with a dietician (or three) along with other BD Mama's to come up with some different options. Hopefully we can find some things her stomach can digest!
We'll be going back to her GI in Minneapolis and possibly to the GI at Mayo. We weren't thrilled with the one at Mayo, but will see what her Geneticist at Mayo says. Either way, she'll be doing follow-up GI care to see what other options we have.
As always...thank you for reading. For caring. For praying. For holding our little girl close to your hearts. We appreciate it more than words can ever say!
Mayo Clinic Round 1
Livy had quite a few appointments/procedures, but it went very well and Livy was a champ (as always!). Her geneticist checked for a heart murmur and nothing, thank God. He wants Livy in weekly + swimming classes and possibly some PT to strengthen muscles in hopes it will help support her joints and prevent dislocations.
The GI felt there was a lot of testing that should have been done over the last few years and asked why she wasn’t already seeing a motility specialist. #shouldbeadoctor
He ordered some GI testing and blood work to check for malabsorbtion, which he didn’t think would present. I was told that if the blood work came back with issues, he’d then schedule fecal testing to further look into malabsorbtion. Unfortunately, the fecal testing showed up on our schedule by the end of the day. L Her GI is referring Livy to Nationwide Children’s Hospital in Columbus, Ohio for motility testing. He chose this hospital because of particular testing they do, their motility reputation and because they place gastric pacemakers in children. He felt Livy is a candidate for this surgery in hopes of getting her off the constant drip feeding.
Livy was seen by OT for a swallow study. She passed with flying colors, showing now aspiration or mouth muscle weakness. She does take very small bites and holds it in her mouth, using several swallows to clear, but the OT says that’s probably a result of Livy’s Gastroparesis.
They took the maximum amount of blood and the only issues I’ve heard of is the malabsorbtion.
Those were the main appointments/procedures. This trip to Mayo was very productive but also puts a lot more on our family’s plate. I have to take Livy back to Mayo the next 3 weeks out of 4. Her GI hopes to have Livy into Nationwide within 8 weeks, providing we don’t run into issues with insurance. Part of Livy’s upcoming visits to Mayo will include a sleep study to see if she has restless leg syndrome that could be attributing to her leg pain and sleepless nights
Troy and I are still processing everything and are pretty overwhelmed right now. It’ll be a real feat for one of us to get away this much with the busy season coming for our business and all of these trips will be a big financial drain. It’ll also be a LOT for Livy to handle. But it’s still a good thing. The GI agrees that we need answers to questions like ‘What exactly is causing Livy’s problems’, ‘Will Livy always need a feeding tube/what does the future hold for her’ and ‘What can we do to help Livy’.
I owe you all an update...it's been a LONG time and a lot has happened. Livy went through a rough patch and was really sick. We feared we would lose her for a time, but thankfully after a week-long hospitalization in Duluth, she is finally doing better. I will update soon, but have a quick notice for you all.
I wanted to let Team Livy (I had to come up with something to describe our wonderful support team) know that our newest member of the Livy Love Foundation is hosting an online auction to benefit Livy and help with rising medical costs and supplies that are needed.
There are many items up for auction and you can bid on them on the FaceBook page linked below. Bidding for the auction will begin at 1pm Central time on Sat., March 16th and end at 1pm Central time on Mon., March 18th. Items will be shipped to winners and payments will be made online to Livy's Online Fundraising Site.
Check out the LOVE for Livy Auction HERE: http://www.facebook.com/media/set/?set=a.357973870988913.1073741825.338451546274479&type=1
Thank you all and I will update ASAP. Thank you so much to everyone that has donated items for the auction and to all of you that will bid or send out love and prayers to Livy and us!
My special girls!
Livy’s really been struggling lately. Her body can’t tolerate the Gtube feeds, she’s in lots of pain, she’s not sleeping and over the last week, her wet diapers have dropped to 2 per 24hr period.
Monday I spoke with her PCP, who wanted Livy in the ER immediately. They drew blood for labs and they came back fine. She wasn’t presenting with any other symptoms and didn’t seem really dehydrated. Once again, I heard from a doctor, “Something is very wrong with this child, I just don’t know what. All I can recommend is to keep searching for a specialist. And if she’s still not pee’ing enough over the next 24 hours, take her to
His main concern was her lack of nutrition and was worried she’s just not getting enough in. Which I knew already.
I was SO frustrated. I want answers for my Livy. I don’t want to hold her down while she cries in pain for procedures and not find anything out. We waited and I tried getting ahold of someone who could tell me HOW much is too little pee’ing out, but didn’t have any luck on New Year’s
Day. Everyone was short staffed and busy with the holiday.
Livy in her Christmas dress.
Wednesday, first thing when I woke up I started making calls.
I talked with her GI who felt that 2-3 diapers is fine with her good labs and no other red flags. And again, her lack of input became the focus of the conversation. He brought up another option since the Erythro didn’t work. I made the decision immediately on the phone with him. Livy’s surgery for Jan.19th will be changed. Instead of just a button change, she’ll now be getting something called a GJ feeding tube. This is our current GI’s last hope. He’s out of ideas after this. I can’t tell you much on
the GJ. I need to research. I just know we need to pray that it allows Livy to tolerate higher rates of feed and takes away some of her discomfort and vomiting/retching. She needs nutrition and she needs it now.
Sleds from Santa!
I also talked with her PCP who agreed with the GI about Livy’s output. The general consensus is that Livy’s body is just slowing way down due to her lack of nutrition. Livy’s PCP and I had a very serious and HARD conversation. She stressed how very worried she is about Livy. That Livy’s not getting enough fluids and nutrition even for maintence. That her small bodies organs can only hold out so long without enough fluids and nutrition. That we can’t wait much longer for answers. I’d brought up concerns about the next symptom we’ll see…we’ve had Neurological issues on and off for months, lack of intake and lack of output. What happens next, a seizure with lasting effects? I really expected to be told that wasn’t a concern. Instead, her PCP agreed with me. My heart sunk.
So, as of now, we push to see anyone and everyone we can, while praying the GJ tube, if not the answer, gives us enough time to get a diagnosis and plan in place. We are waiting to hear on referrals to a Peds GI Motility specialist out of Milwaukee Children’s, for a Peds Psychologist to help with Livy’s stress level and a Peds Sleep doctor since as Livy’s getting sicker, she’s sleeping less and her Neuro symptoms are getting worse again. We also are getting a new glucose monitor and will be testing blood sugars because of increasing hypoglycemic episodes.
Livy asked Santa for bike & to make her better.
I’ll beg of you all, to keep Livy in your thoughts and prayers. The last
three months has brought us to a place we thought we’d left behind. A place of fear and sadness. We’ve had many ask…can we add Livy to our prayer groups/chains? Yes, please do. Yes, you can tell your friends her story and ask them to pray. We need every person we can pulling for
our Livy Love right now.
Thank you, each and every one of you. I’ll keep you updated as much as I can. Please send Livy all the healing strength possible!
Livy & Sophie @ the Aquarium in Duluth.
Enjoying the Treehouse Slide, despite being sick!
Sharing the cart while checking out the otters.
She loved seeing the animals, lol!
Tired out and not feeling well.
I’m not sure where to start with this update since there’s so much going on right now. First off, Livy’s surgery for her button is scheduled for Fri, Jan 19th…in Duluth, MN! That’s right; we don’t have to drive all the way to the cities. Duluth just started doing these surgeries there and it’s a much shorter drive for us, plus we get to visit our ‘old home’.
I wish I had more good news to share, but I don’t. About 3 months ago,
Livy went from responding perfectly to the Gtube to her body not tolerating her tube feeds. Livy’s feeds have always been at a very slow rate due to her GP, but it’s gotten to the point where it’s just not possible to get even near the amount of formula in her that we should. We are trying to run her feeds at 15 mls over the course of an hour right now and Livy’s struggling with that. She’s having severe stomach pain, vomiting and retching. Because of how slow her feed is, Livy also needs to constantly be hooked up. Before we could give her small breaks, but not now. And when Livy’s this sick and weak, she generally only uses the IV pole, which can be hard. Imagine being a tiny little 2 yr. old and having to drag a big metal IV pole around behind you, having it catch on things, tip over, etc.
We just tried a medication call Erythromycin which we hoped would speed Livy’s gut up. It hasn’t worked. In fact, it’s done the opposite and we’ve pulled her off it. It made her FEEL hungrier and she was actually asking for food and wanting to eat a few bites. And I know you might be thinking…but that’s GOOD, right? The thing is, real food actually isn’t GOOD for Livy. What would be best is if she only had her formula. It’s what’s easiest for her stomach to digest. Real food will slow her gut down even more.
At this point, we are trying to avoid Livy orally eating any‘real food’ at all and trying to keep her as comfortable as
possible. There isn’t much else we can do at this point. We are waiting to see some new doctors who can hopefully give us some answers so we know what to do for Livy and how to help her. Not knowing is tough…watching Livy struggling and in pain is our worst nightmare…not having answers, not being able to do anything to help her…it’s the worst. So, we wait and we pray. We pray that she gets better and feels as little pain as possible. We pray her referrals go through quickly and that these new doctors can help her. We pray for answers, for a diagnosis and a plan towards good health and happiness for our Livy!
**For all family and friends that visit, please remember how important it is that Livy not be exposed to any bugs. If you’ve been around anyone that’s ill or you’ve been ill, please wait a week past any symptoms before visiting. Also, remember to wash your hands when you first get here…germs come in on hands and can be spread. Not only will getting any bug slow down her gut, but Livy’s also been too sick to get all her vaccinations. She’s very susceptible to illness and it will hit her harder than most kids. We appreciate everyone’s help in keeping Livy as safe as possible this flu season! Thank you!
Merry Christmas and Happy Holidays friends and family! We hope that you've all been enjoying the season and have been able to spend time with your loved ones. We also want to thank each and every one of you that has kept us in your thoughts and prayers over the holidays or have sent cards/gifts to Livy and her sister Sophie. Their Santa morning was especially joyous due to the generosity of others. A heartfelt thanks to the Haugen American Legion Post No. 540 for their part in making the girls Christmas so special! We are truly touched and blessed!
I know many of you have been asking what's going on with Livy...how she's responding to her new medication, when is her surgery and what's our next step. I'm working on an update to post right now, but we've been bombarded with medical issues the last month. Add that to all that goes with Christmas and I'm behind! I'm also almost done with our Question & Answer blog post that I've been working on to address the many questions we've had emailed and asked over the last few months.
Thank you all again, for all your support and love. The kindness we've received from so many has only continued to cement our belief in the goodness of people and our determination to raise our girls with giving and loving spirits. May each of you be blessed with much love, joy and good health, not just during Christmas, but all year long.
All our love,
We enjoyed a mini photo session at Three Bee's Photography with the girls. We hope you enjoy the photo's of our sweet girls as much as we do! Many thanks to Three Bee's for being kind and patient with us!
Are they cute or what?! They simply melt my heart.
Tired and not feeling well, but still adorable!
Livy's bestie and little sister, Sophia Grace.
While we couldn't get them to sit still and smile, we ended up with amazing pictures showing their love for each other...kissing, telling secrets and hugging!
Our family! Please excuse Troy's and my hair...we'd spent a decent amount of time running in circles after the girls at this point!
Merry Christmas and Happy Holidays!
Livy's festive tube pad by Super Bellies!
Well, Livy’s growth success seems to have come to a halt. Livy weighs less than she did 2 months ago and her stomach seems to have slowed way, way down. We were doing SO good for so long that this has been hard. And since Livy’s stomach isn’t working, that means she’s in pain, not sleeping (which means we aren’t sleeping), she’s gagging/retching and throwing up and we are playing a constant game to figure out where to set her feeds at. If we go too high, she gets sick and we have to back way off. Yet every ml lower we go, that’s less nutrition and calories that she so desperately needs. Livy’s goal feed rate to leave the hospital after her G-tube surgery was 50mls per hour. We never got there, but
because Livy was so stressed in the hospital, they let us leave when we got her to 40mls per hour. We never managed to get her up to the 50mls and the rate we normally ran her feeds at on a good day was 40 mls/hr. This tells you how slowly her stomach works, especially when you consider all she’s getting is Neocate Jr., a formula that’s broke down to its most basic properties and the easiest thing for her to digest.
These days, hitting 40mls would be awesome. But it’s just not happening. We are currently stuck at 15 mls an hour. Imagine how little that is. It’s 15 eye droppers full over an hour’s span. But it’s all her broken stomach can handle, so it’s what we do. Since her feeds are so low, she’s having more issues than ever with her blood sugar levels. We are adding PowerAde to her feeds to help with this as well as having to do regular syringe pushes of it to get her sugar levels up when they drop too low.
We talked with the GI today and are waiting to hear back on what they’d like to do now. We are looking at a few options, from going back to the cities to have them examine her and do tests to being able to try a medication called Erythromycin. Livy was on Erythro before she got her tube and it did help her motility some, so we are hoping for that right now. We would be so grateful if it would get her tummy working a little faster and give her some pain relief! We are also waiting back to hear when they will do her Mickey button surgery.
I’ve had a lot of people ask when Livy will see the doctors from all her referrals from her Neuro stay. It will be awhile yet, as we are still in the beginning stages of the referral process which take a loooong time unless it’s an emergency. We’ll let everyone know as soon as we get anything set!
Cleaning Livy's stoma. She's wearing a Belly Belt that helps hold the feeding tube and prevents pulls.
I’d like to remind everyone to friend Livy on Facebook so you can get regular updates on what she’s doing!
Here’s her page: Livy Love Facebook Page A very big thank you to The Livy Love Foundation members for all their time spent on the recent raffle they did to raise funds to help with Livy's medical costs, needs and care. We really appreciate everything you guys have done for us this year. Learn more about these great people and their efforts on The Livy Love Foundation Website.
We often hear, “I don’t know how you guys do it, how you manage it all.” But the truth is WE don’t. Not Troy and I
anyways. We don’t do it, we don’t manage. It’s us, our family, our friends, our employee’s, and our community that manage. Our vast and amazing support system. THAT’S how we do it. Because without the support and help we have, I really don’t think we would have managed this long.
Without our family stepping in and helping out during hospitalizations, running the restaurant when we can’t, helping take care of the girls, we wouldn’t have managed. Without our staff willing to step up and take over, saying, “Go, we’ve got this. Don’t worry about the store”,we wouldn’t have managed. Without our friends, family and community throwing Livy a benefit and offering so much support, we wouldn’t have managed. Without my best friend driving from another state one or more weekend a month to play with the girls and give me some ‘girl time’, we wouldn’t have made it. Without our friends that offer a shoulder to cry on, an ear to vent to, we wouldn’t have made it.
After Livy’s last hospitalization, we were exhausted, burnt out and stressed out. It was the hardest hospitalization/week we’d been through. Then some dear friends stopped to visit us. They offered us hugs and proceeded to tell us how they always read our blog and how much they care. They offered us support in so many ways and touched our hearts so dearly. During our time with them, I said, “I just feel like ‘Thank you’ isn’t right. It’s not big enough. I feel like there should be a different word/saying”. But there isn’t. Their support and love left me speechless (which doesn’t happen often) but also left us so lifted in spirit and with the knowledge that we could keep fighting for Livy. Because we had people like them behind us, supporting us.
So, to everyone that’s reached out and helped, everyone that’s offered support and love….we say Thank you. Because it’s all we can say. I wish there was a bigger word. A saying that describes how we feel, how deeply touched we are. But we are left with Thank You. And we hope it’s enough. We hope you all know how much it means to us, how thankful we are. Each and every day. We hope you know, that each time we’ve felt like we can’t go on, it might
have been YOU that reached out that day and offered support or love. That it might have been YOU that said, “You guys are doing such a great job” and that lifted us enough to face another day.
There simply aren’t words except…Thank you.
Well, Livy's Brain MRI looks good...nothing missing and nothing extra. This is great. We are still waiting to
hear back on the vessels, but the Neuro said she didn't see any obvious issues. PHEW!!!!!!! Thank God!
So, this brings us back to what's going on. The Neuro expected answers there, but since she didn't find anything, they are thinking of a few possibilities.
1. Livy could have a virus in her system that's causing all of this. She's had other symptoms that could be virus related, but they just aren't sure.
2. It could be from sleep deprivation. Livy's sleep in the last 1.5months has been awful with constant night waking’s.
Little brains need lots of sleep, so with how little she's getting it's possible she's dazing out to the point that she's unresponsive even to pain. They said they didn't realize she was having such bad sleep problems or we would
have known this good option existed…somehow it didn’t get in her chart!
3. It could be behavioral. With Livy's blinking potentially being a tick and her showing some OCD issues, especially regarding HOW she sleeps, it could all be tied together. She’s had a really stressful couple of years, which can trigger this kind of thing.
4. It could be something that is just happening and will disappear. (Fingers Crossed!)
5. It could be something else that gets worse and we come back in the next couple weeks/months.
So, what do we do now?
Livy’s getting referred to the Pediatric Sleep Doctor’s to try and figure out WHY she’s having so many sleep problems and make sure there’s not an underlying issue. They are also having Livy start taking Melatonin to try and restart her sleep pattern.
We are also being referred to a Pediatric Therapist to see if Livy’s medical past has ‘stressed’her into ticks/OCD/not
We have to monitor and chart Livy and if she’s still presenting with these symptoms in 3 months we come back to her Neuro Team within 3 months. If it gets any worse or she presents with any new symptoms, then we have to immediately
Once again, Livy had us and the doctor’s worried only to stump us. I’m getting really used to hear, “I just don’t know WHAT’S wrong with her”. I hear that almost as much as I hear, “She’s so adorable and smart!” :-)
The Neuro Team was awesome and is also giving us some resources to try and help get Livy’s underlying diagnosis for her FTT/Feeding Disorder. How awesome of them…to SEE that there’s a problem and care enough to want to fix it even though it’s way out of their department. This hospital and Neuro Team (and care team!) was as perfect as can be.
I know so many people have been praying and rooting for Livy. The doctors were so concerned between her symptoms and her EEG…for her MRI to come back looking good was an amazing surprise! Thank you to everyone that’s been pulling for Livy and offering help and support. You all are wonderful.
It's a GREAT DAY! We are going HOME!