Wednesday, August 17, 2016

Planning our next round in Cincinnati

We have multiple appointments that we're working to get on the books.. multiple appointments and also multiple procedures.

Most the procedures Annabelle needs performed will be done while under anesthesia, so our mission currently is to work on the coordination of that.

I called Dr. Putnam's office to speak with our GI / EoE Clinic Team and schedule our next upper and lower endoscopy. They informed me that Dr. Putnam is pushing Annabelle to the Neurogastroenterology and Motility Disorders Clinic.. we discussed this before but I just wasn't quite prepared with the fact that we would be exploring more Gastrointestinal disorders. I knew it was happening, it just sucks to face it.

Our doctor at the Motility Clinic has already ordered tests for Annabelle. The first of which will be an outpatient procedure (that the nurse over the phone warned me, she will HATE). It's called an Anorectal Manometry. Annabelle will be awake as they insert a camera, balloon and tube into her bottom. They'll inflate the balloon at various places thru her colon and large intestine to measure the strength, sensation, movement and reflexes she has to what would feel like stool. If she doesn't respond to the balloon, than we know there is a problem that lies in that specific portion of her intestine / colon. They'll then move to another portion and keep testing. The procedure takes approximately an hour but this will give the doctor an idea of where her body isn't working and allow him to pinpoint which areas he will treat.

The next procedure the motility specialist wants to perform are botox injections into the anal and rectum sphincter to promote the nerves to begin to move and function again. This procedure will be performed under anesthesia. Before he can begin though, he will also dilate all the problem areas to ensure the botox is reaching each area it needs to work.

Other tests that will be performed while Annabelle is under anesthesia are the Muscle Biopsy and also Upper Endoscopy. Therefore, it's taking a lot of leg work to coordinate three surgeons for one patient at the exact same time: Gastro, Motility and General Surgeon.

Those are our main procedures (so far) that we need to perform during our visit. However we are also scheduling with:
  • Human Genetics to discuss the exome genetic testing. AK and I will be tested as well as Annabelle during that time. I'm not certain what those outpatient procedures are quite yet. 
  • Dermatology for the bumps and rashes all over her skin
  • Sleep Clinic to follow-up from the sleep study we performed in April. I know this doctor also wants labs performed and belle will require some cardiology tests before starting the medication they want her on (if we choose that route). 
  • Cardiology for an EKG and Stress Test, this is a requirement before the motility team can perform their tests
  • Neuromuscular as a followup from our last visit and to discuss the muscle biopsy that she is ordering. Dr. Tian strongly believes still that we are nearing either a Mitochondrial or Metabolic diagnosis. I hope this muscle biopsy gives an answer.
  • Motility Clinic in the beginning of the week so they can meet Annabelle in person and also talk with us about their plans for the week. We will have a follow-up at the end of the week to discuss all the findings and how the surgery went etc.
  • and of course, Gastroenterology. We will consult with Dr. Putnam before and after the surgery and when the biopsy results come back. We are praying that our numbers are going down and the EoE isn't progressing more than it showed in April. Our instructions (since we are in the middle of a lot of testing) were to do nothing with Annabelle and pray with everything we have that the EoE remains calm until we can get our testing completed and figure out what is going on.  
So while we are trying to work and coordinate these appointments, we are also working full steam ahead at home re: Annabelle beginning school. Her team at Cincinnati was quite frustrated about the school not honoring an IEP, so I have been digging into my own research on what I need to be fighting for when it comes to Belle academically. Fortunately, we do have the blessing of an entire nursing team behind us here at home. The nursing agency our nurse works with is wonderful at advocating for their patients / kids, so I have leaned on them a bit for guidance. So we'll see where that takes us :)

For now, it's been school supplies shopping... 36 glue sticks, 60 pencils, 8 composition notebooks, (Im seriously not kidding on any of those) and of course, new school shoes!



Our appointment with the school is next week and hopefully by then I would have heard from the hospital about a date when we will return to Cincinnati. I just hope it isn't around the holidays again..

Friday, August 12, 2016

An emotionally exhausting Cincinnati day

Tuesday Evening
I flew home as fast as I could to finish packing our last minute things. Annabelle was laying on the couch and just watched as I made passes by her over and over. She knew exactly what was going on. My mom and grandmother came to say goodbye to us before we left, but Annabelle didn't want anything to do with either of them. She just watched cartoons and lied down on her blanket. 

I packed two piles. The first pile was everything our family would need during our 3 day Florida trip with friends. AK would be loading the car with those bags and hitting the road first thing Wednesday morning. The other pile was the carry-on bag for Annabelle and I to go to Cincinnati. It had to hold everything we would need for two days, including all her medical supply. I knew that from the moment I left my house until noon the next day, I would be carrying her everywhere so packing a bag was very strategic. Before hitting the door, I went to my bedroom and took multiple deep breaths.. a fast shower and ran downstairs to find my mother and grandmother mischievously planning... mom somehow talked our grammy into a spur of the moment, no clothes or bags packed, road-trip with me and Annabelle to help make the trip easier for us. (Easier? Not sure. More fun and great distraction? Absolutely.) Before I knew it, I was saying goodbye to AK and Mady and Annabelle were standing in the driveway whispering to each other and hugging for extra long periods of time as they said their goodbye's. They argue often, but when it comes time for Annabelle to have to go to Cincinnati, they both lean on one another and share into that sisterly bond. I kissed Mady, picked Annabelle up, and the four of us loaded into mom's tiny sports car to head to Alexandria, VA for the night. 

We stopped at Joe's Crab Shack to avoid the rest of Fredericksburg and NoVA traffic.. the night was perfect. The drinks were delicious, Annabelle was able to play while we ate and the food... oh, the food was steaming perfect!



I couldn't sleep Tuesday night. I knew we needed to leave before 5am and was worried we would oversleep. I was also scared to death all night about not feeding Annabelle and how she was doing. She tossed and turned a lot but didn't wake much. Mom and I got up shortly after 4am and began to get ready. I dressed Annabelle and could immediately tell she was weak already. The airport wasn't far away, mom dropped us off and we made our way to our gate. Annabelle didn't walk at all. She didn't want to even stand while we waited to board the plane. In between begging not to go to Cincinnati, she would take short naps, wake up, cry, and go back to sleep. It was a hard flight...  


Our plane landed right on time. As I carried Annabelle, for what felt like 3 miles, across the airport from our plane to Enterprise pick-up, she begged and begged not to go to the hospital. I hardly responded. At this point, engaging in the conversation just gives her false hope that she has an opportunity to negotiate out of the inevitable. We boarded the shuttle to enterprise and she began begging again, in front of everyone as they stared at me... I felt like I stood 2 inches tall and all I wanted to do was break down and cry just as hard as she was. I want her to see how much this is killing me too, but I can't. Being strong but sensitive, tough but compassionate is. so. hard!

Once we got our car, she fell asleep. Fortunately, she was too weak to continue to fight and cry. Our drive was about 30minutes and I swear she was asleep within the first 5m. Thank. Heavens! It gave me a few minutes to pull myself together. Breathe and freshen up from the hustle of the morning.



As soon as we arrive at the hospital, it began all over again. This is when I see that diagnosis of "anxiety". It's in full motion as she panics, her head whips from left to right, her breaths are shallow and weak, her voice is shaky and her eyes are so deep and dark with sadness and defeat. We sit in the waiting room and she won't even sit beside or look at me.


She sobs, "Why are you making me go mommy? Please, PLEASE let's don't go to Cincinnati. I don't like the hospital! Why do you always make them hurt me? Please MOMMY!!! .. please . . . . . . I don't love you, I'm not your friend anymore"
..... she has no one anymore.
She's completely alone, in a huge city with her mommy and not one person is in her corner to protect her. I look into my daughter's eyes and can see clear as day how much I am damaging her, and there's nothing I can do about it. I will never be able to repair this emotional trauma. She's pleaded for hours, Ive tried talking and explaining to her why we have to do these things, she begs me not to hurt her and I do exactly that - I drive to a hospital, carry her inside and hand her over to a nurse who will then bring in a friend as the three of us hold her down and do exactly why she's begged not to happen.

The lab draw was quick and painless. She got it on the first stick but did have to do some digging to find the vein. Annabelle never pulled away. She screamed for us to stop all the way until the needle was in her arm, but then she held still until it was over. They also needed a urine sample. After the blood draw, we tried to do that but she didn't have to potty.. I agreed to take the specimen cup with me and collect next time she potty's and just drop it off to any of the three hospitals we would be visiting over the course of the day.



Afterwards, we headed to the next hospital where we would pick-up her wheely-chair. I hoped it would boost her spirits since the bad part of the day was behind her, but that's the thing with depression, trauma and kids that suffer this life.... shiny distractions hardly work anymore. Without a doubt she was happy that we were picking up the chair (and so was I, my arms were nearly ready to fall off from carrying her everywhere), but the exhaustion of defeat was just far too heavy for her to force a smile.

These are the moments that kill me the most. 


After making some adjustments and mechanical fixes to the wheelchair, I signed our $8,000 bill and we left. Annabelle wouldn't eat any of the snacks or drinks I had for her and I knew she needed a feeding ASAP so we decided to have a lunch together. Perhaps it would cheer her up? Not the case. I did hook her to a pretty fast feed, because she needed it. But it made her nauseous.. she was then mad at me for feeding her and making her tummy hurt. It was a lose - lose kinda day. Fortunately, right after lunch, it was time to head to our third and final appointment of the day = Human Genetics. The appointment was across town so Annabelle fell asleep on the drive. We got there early and I sat in the car and prayed before going inside.

Dear God. Hear my prayer, please. 
I am broken.
I am shattering with every grain of salt this journey is pouring into my wounds.
Why did you give me a baby so broken? Why do you think I am strong enough to make it thru this? What is the purpose of torturing this innocent child? and hasn't it been enough?
I can't see clearly anymore. I can't tell the difference between fighting for my child and protecting her from the cruel world. 
I can't feel anything. My words, patience and judgement to all those around me has become so jaded and callused to anyone's feelings. 
I know I am strong, thru you. But I am so weak in my own knees. 
I used to parade with confidence and now I question every decision I make. 
Please, give me the clarity, knowledge, wisdom and love that I need to continue to take care of this baby girl.. because I don't know if I have it anymore.. and Annabelle needs a mommy that does. A mommy that can feel the love she gives to the world, a mommy that can see the progress she is making or the ailments I need to recognize to help her doctors continue to care for her. She needs a mommy that can make only the best decisions for her. My family needs me God, and this journey is tearing me apart. 
Help. 


I was so weak when I looked at the clock, it said 1:20pm. Our appointment was at 1:30pm and I knew I needed to pull myself together and get inside for our appointment. I re-assembled the wheelchair, gently woke Annabelle and we made our way inside.

Dr. Burrow's is wonderful. Our appointment was every bit of an hour and a half of talking, discussions and planning. When we arrived, he already had an idea of what he wanted to happen and where our next steps needed to be. He did an evaluation and exam with Annabelle (confirming again her Hypermobile and Hypertonic Joints), we reviewed past labs and talked about the progress she's made as well as her global decline. He ordered that it's time we complete our Neuromuscular DNA Sequencing Panel and also prepare ourselves to begin what we've been working towards - Genetic Exome Testing. (!!!)


When we return, AK and I will sit down with Dr. Burrows and have a heavy discussion about the testing. The positive in doing this type of test is that we may finally get the answer we've been looking for, the diagnosis for Annabelle's global issue. But the downside, is that we will also likely get a lot more information about our baby girl that we haven't bargained for ... and my never want to know. This testing comes with a price, (not just literally, because yes, it does, and it will likely be cash as hospitals and insurance do not pay for research and testing like this.) Learning Annabelle's genetic story requires deciphering all possible gene interactions. We may learn about disease-carrying mutations that she has... terrifying diseases she could carry but never develop. Or diseases she can pass onto her children. We may learn about much more that is hurting her that we never imagined or may learn that she has multiple precursors such as cancer's, huntington's etc. More importantly, AK and I will also be tested in order to cross reference her DNA with ours to verify a positive diagnosis. This means, AK and I will find out which of the two of us passed on whichever gene that is hurting Annabelle.

All of these are burdens that I imagine will be unbearable to live with. The thought itself makes me ill.

When we talk with Dr. Burrow's at our next appointment, we will discuss just how much information we want to LOOK for and how much information we want to KNOW when we get the results. In the meantime, we have a lot of thinking to do...

I left, once again, feeling more exhausted than hours prior. The message and quotes on the walls as we were leaving, made me stop. I read each of them to her as we left... I needed to read those as we walked out of the hospital for the last time of the day.


Annabelle and I stopped for a bottle of water for her, and a terrible-awful-beverage choice for me.



 The trip to the aquarium was intended to be fun. We had a few hours left of the day, Annabelle still had not gone potty so I was still walking around with an empty specimen cup (we never did get a sample. She didn't potty for the first time all day, until late that night). I kept pushing fluids and she was just still too weak. The fasting took a huge toll on her body. I also think she was being slightly spiteful and holding it because she was still so mad with me. The aquarium itself was beautiful as always. I tried picking Belle up to let her see the things in the top windows, she didn't want me to touch her. I offered to do face painting (and I even told her I would get mine done too!) it didn't work..


This is the face of "broken" :(



As we walked around, hunting for a blowfish in every single tank, an employee came up to Annabelle and asked why she looked so sad. Annabelle told her it was because she has boo-boo's that won't go away and we keep having to come here to get pokes. The poor employee forced a smile and said, "let's go find more blowfish", and she led Annabelle towards another tank. Within a few minutes, the manager approached Annabelle on one knee and asked if she likes penguins, she halfway smiled. We took the giant elevator to a special room at the aquarium and inside the room were a bunch of little penguins. It sure didn't work to break the sadness from her heart, but it did bring a smile to her face as they squawked at one another and she got to pet them.  




Finally it was time to head home. We dropped the car back off at Enterprise, shuttled to the airport and had dinner. As we were approaching security, I told Annabelle that before we get on the airplane to go to Florida, she had to smile. Because noone is allowed to go to Orlando, Florida without smiling all the way there. It worked... she gave me a smile, waved two thumbs up for daddy that we were on our way and we headed to board the plane. 

 

As she laid in my lap on the plane that night, I watched the clouds pass by us. 
Belle told me we were in heaven. 
I feel like we're in hell. 

 

Tuesday, August 2, 2016

Change of plans

"Mommy, I'm scared. I don't want to go on an airplane and I don't want to go to Cincinnati. I don't want to go to anymore hospitals or have a tubey and I don't want a wheely-chair. 
I want to be 5 and not sick anymore, please. Please mommy."

We have hit a point that she's clearly identified herself as different. She recognizes how unique her body is from others her age.. and now that school is on the horizon, she is searching for opportunities where she can be 'normal' and pretend she isn't as sick as she is. We negotiate with her as much as we possibly can, while still maintaining the necessary care she requires to keep her 'safe'. But it's hard. It's hard to negotiate a pizza slumber party at a friends house when she can't eat pizza OR spend the night away from us. It's hard to talk about the school bus and school activities when she can't ride the same bus as her sissy and friends and she won't be able to participate in recess and P.E. She wants, begs, pleads and cries for me to allow her to do these things.... all the while it's her own little body that fails her, but she blames us (me specifically).

As the time to travel back to Cincinnati for our 'quick trip' to pickup her wheelchair nears closer - I contacted a few doctors to try to make the most of our trip. That apparently, opened a can of worms. Here's what I have discovered... try to hold on.

A year ago, we saw Human Genetics and Dr. Burrows explained what we already suspected, Eosinophilic Esophaghitis is NOT Annabelle's leading diagnosis. There is a global issue with her body, likely genetic, and in order to treat/control the EoE, we need to first determine what the overlying issue is. The best way to find this answer, is to study her Genetic DNA to find the defect. However, looking for an issue in DNA is literally like looking for a needle in a haystack. So, what we do is try to narrow in which areas of her DNA we believe would hold the answer.

Think about DNA as a mile long strand. Each section controls and impacts different functions of the body. We know she has an auto-immune disease, so we retain that section of DNA, we know she does NOT have Downs Syndrome for example, so we eliminate that section. The more we can confirm and/or dismiss, the more specific and closer we can get to where we believe we can find the defect. In order to narrow in where we want to look .. we go 'shopping' with other doctors, seeking their opinion and perspective. And that's what we've done, for a year, we've shopped.

She has an issue sleeping: Visit the Sleep Clinic
She has very little endurance: Consult with Neuromuscular
Her behavior, attention and attitude is a concern: Meet with the Neuropsychological team

Our Geneticist coordinates who we will see, we visit that team, gain their perspective on Annabelle from their expertise, if they determine she has a supporting diagnosis from them or they see an issue that could help pinpoint our answer in her genetic DNA - than we collect that information and keep moving.

So for a year, that's what we've been doing. That was our homework in order for us to get an answer to save Annabelle.

Side note, if you weren't following last year: We had three options. 1) Take Annabelle home, enjoy our time with her and pray that she can have a wonderful quality of life for what we have left. At the time, Annabelle was gravely ill and as her parents, 'giving up' has never been an option. 2) Begin the testing immediately. It would take years and years and insurance will not cover any part of the research. The team studying her DNA wouldn't have the first place to start and there's a chance we would lose Annabelle before they ever even found an answer. Basically = lots of money that we don't have + little promise to finding an answer. 3) Put Annabelle thru a series of testing and assessments so we can have the best information available when we choose to go forward with the DNA testing. Thru the series of tests/assessments, we will also begin to work with teams of doctors that will be able to help Annabelle and recognize concerns that we otherwise may have never been able to support and help her (aka, ADD / Anxiety / Depression diagnosis, Encopresis diagnsois, Limb Movements in sleep which keep her from getting rest, wheelchair to help her gain more independence vs sitting on the sidelines because she can't keep up). We choose to go with option 3. It allowed us to continue moving forward to improving her quality of life AND we are still on the same path to one day gaining Annabelle's 'Global Diagnosis'. Once we discover that, we will be able to treat the global issue and in result, hopefully control everything else that is hurting and damaging her body. Our only hope in saving and helping Annabelle is by getting that diagnosis. Every minute in between then, is sheer prayer and Belle's fight and determination. .. .. .. .. also, I hate to even share this disclaimer, but there's also the chance that they STILL may not find the issue. Our entire team believes we will, but they do communicate to us, that it's still a needle in a haystack effort. We're giving it our best shot to finding it by doing the leg work, but at the end of the day, it's still an incredibly expensive, incredibly long process and zero GUARANTEE. We are okay with those odds. It's still the best option for our family.

Back to our trip.
I called and wanted to schedule with our Genetics Team just to make sure we were still on track with our 'homework' and determine if there are any additional tests/consults they want us to perform when we return for our next planned surgery in October.

That began a spiral of even more 'homework' aka labs, procedures, tests etc. Our Geneticist learned how badly Annabelle relapsed in April and he's determined to keep the ball moving as quickly as we can. We don't have an explanation for why she relapsed, which is scary bc if we didn't cause it than we can't make the change to get her back into remission. Based on the findings with Neuromuscular, the strength in her legs and hips are deteriorating which tells us that whatever is happening, is spreading.

He wants a muscle biopsy done ASAP. In order to do that, Annabelle needs an Echo-cardiogram and EKG, but they want that performed with their own Neuro team in the Multi-Disciplinary Clinic where we'll consult with Pulmonary, Cardiology and the Pediatric Surgeon. Before we do THAT however, we need to have a slew of labs drawn. Labs that have to be drawn after Annabelle has been fasting. We did a lot of labs the last time Belle had surgery (bc she has to fast prior to surgery of course), but they weren't the same as what this team is looking for. I believe they need a full Metabolic Panel, seratine, carnatine, acid, DNA extraction etc etc levels. (I can't speak labs. I can speak medical, but I do not speak labs lol).
Regardless, we have a problem. I haven't had Annabelle fast alone with me in years. The last time she did, we had serious problems and landed in the hospital where she could barely regain consciousness. Thus the reason why we have to be admitted every 3 months prior to surgery. In the hospital they monitor her better, she remains on IV fluids, glucose etc and exerts very little energy as we wait for surgery. They want me to begin having Annabelle fast tonight, get on a plane tomorrow, and then wait several more hours and we draw labs. Holy guacamole, PANIC! I'll be completely alone with Annabelle, 3,000 feet in the air and unable to feed her, give her medications, or care for her and just pray like a crazy person that she can make it to the hospital in Cincinnati before giving me a full on heart attack.

I agreed to do it.

I know, I'm crazy. So please, pray for Annabelle's safety tonight and tomorrow. Just pray that we can make it to Cincinnati Children's as quickly and smooth as we possible can. Once we are there, I will exhale until the labs are drawn and I can hook her up to feeds again.

Second scheduling nightmare that I've run into is a little preliminary.. looking ahead at surgery in October, we need to perform her routine upper and lower endoscopy, but our GI doctor wants the Motility team with us in the OR. Their team is interested in Annabelle on the Encopresis side of things.. they want to do an Esophageal and/or rectal Manometry and perhaps begin botox treatments if necessary, to encourage her lower GI to begin working on it's own again (we've been flooding her with so many drugs daily since April, that her lower GI hasn't worked on it's own for months). Since we will already be in the OR and under anesthesia for all these procedures, I am requesting that we wait for the muscle biopsy for this time. It's ideal for Annabelle (from an anesthesia standpoint only), it'll be very painful because of all the procedures they'll be performing, but it's also a scheduling nightmare because I have to coordinate so many surgeons at one time for her. This is something I will simply be continuing to work on.. but it's certainly in the pipeline and is causing daily phone conversations to take place already.


I know that was a huge update, I apologize for the confusion. But I did also want to share how the meeting at the school went.

We met yesterday with another large team, where they read to us all their findings during the numerous assessments they did with Annabelle. Every single one of them concluded the EXACT same findings as those in Cincinnati (I hate this for Annabelle.. to have to waste her time to go thru it all again). I wasn't surprised in the least but I guess we just have to go thru the motions. They did not honor her an IEP because they claimed her medical needs do not make an impact to her academically. I disagree whole-heartedly. For many reasons I disagree, but I am okay with it.. for now. Fortunately, they did agree to offer a 504 Plan. This is what I prayed we would get. The entire meeting though, was simply to share with me the findings and the plan = 504. We have to schedule yet another meeting to outline the 504 specifically. At that time is when we will discuss whether or not they'll allow Annabelle's nurse to accommodate her in school. I stated one final time at the table, that it isn't negotiable to not have our hired nurse with Annabelle. She explained that they'll have a representative from the county to be part of that conversation. I encourage it :)

So the meeting wasn't terrible. It wasn't bad, it was fair. I feel as though they got a great assessment of Annabelle thru their meetings with her (all our reports and explanation gave them the same information but they wanted to learn for themselves and I'm glad they were able to get it.) I look forward to our next meeting in a few weeks, and so does Annabelle, i'm sure.

Tonight, I will finish packing our families bags and Annabelle and I will head towards Washington DC. We are getting a hotel for the night so that we will be near Reagan Airport for our 6am flight tomorrow morning. Once we get to Cincinnati, I'll pickup a car from Enterprise and we'll head to the first hospital. There we will wait for the lab draw with the IV pit team. After that we have an appointment at the hospital down the road for the Wheelchair Clinic where she'll do her last fitting for her 'wheelychair' and then we take it home. From there, we will drive 30mi North to Mason, Ohio for the appointment with Dr. Burrows in Human Genetics. Afterwards, I am praying we will have a smidge of time to go to the aquarium before heading back to the airport. Our flight leaves at 8pm and will take us directly into Orlando, Florida where AK and Mady should have arrived via car and we will spend the next three days with some of our favorite friends. Sunday morning we will all drive back home to Virginia. Monday, back to the grind :) WHEW!!


Keep our family in your prayers if you would. Please. Pray for comfort and the safety of Annabelle as we begin to have her fast tonight, pray for a peaceful nights sleep in the hotel and safe flights tomorrow. Please, pray that her body is able to stay within safe ranges that she makes it to the hospital before we're in danger from fasting. Pray for comfort and clarity for my mind tomorrow as I travel hundreds of miles alone with my baby. Also, please, keep AK and Madelynne in your thoughts as they drive the 600 miles to Orlando where they'll meet us late tomorrow night. It will be a very long day for our family and we appreciate your love, prayers, well wishes and never-ending support for our little girl. Thank you, so very much friends.

xo

Monday, July 18, 2016

Quick Update



It's funny how this journey plays with your mind and emotions, how we become callus to information and feelings but still somehow are hurt by others cruel opinions and statements. Between all the chaos, we find our own little niche on a scary path. We learn that only ourselves and our private thoughts are trustworthy.

Annabelle is blessed to have such incredible prayer warriors that love her unconditionally. Our family could never put into words how grateful we are for each of you. But please understand, at times the more information we share on our little girls condition and her fight, the more we expose ourselves to criticism and opinion on how we should be caring for our little girl. That being said, we enjoy most, being able to share our victories with you guys, pictures of her having fun and how she's doing and updated on where we are. 

Annabelle is sick, her diseases are not getting better, going away or slowing down - we are just controlling them the best we ever have. We are collecting more diagnoses with every test we perform but we're barely getting closer to discovering her Global Diagnosis. We need this diagnosis to save our Annabelle, but gosh it's such a SLOWWW process. We don't have the time or patience for 'slow'. So please, bare with us - continue to pray for Belle even when I can't provide an update, bc often I don't have an update to share. I only have a worried heart, sick little girl, needy family but adorable pictures to offer. So if our posts are only that, please bare with us and keep praying. I do believe that one day we will gain her diagnosis, we will find the best doctor to help her and we will all breathe a little easier. Until that day, let's celebrate every victory together and love this fighting little girl!


 

Lately, Annabelle has been crying and begging for 'normalcy'. She has tantrums more now than EVER about how excluded she is from her sister and friends. She gets so frustrated that she can't swim/play/run as long as others because she tires too easily - for that, I cannot WAIT for her wheelchair!!!!
She's also had a heavy heart over foods, snacks, treats, drinks etc. One of which was pizza. She's wanted pizza so badly so I found a place that had safe ingredients and other moms have promised they are allergy safe. Annabelle had a whole wheat pizza with tomato sauce, avocado and olives. It was her first very own pizza and she couldn't have been more happy. She ate one small slice, and then ended up in the bathroom for nearly 45 minutes in pain and nothing staying in her little system. Since then, she's cried that she never wants pizza again because her "tummy's boo-boo's don't like it". Now, im on a mission to figure out how to make one of my own that should be safe.





We're headed to Cincinnati in two weeks. (YAY!)

Monday, August 1st
We have our 504 / IEP meeting with the Elementary School to determine whether or not the school will accommodate our nurse and how we will proceed with Annabelle's needs being met in the classroom. My prayer every day is still that the school will make the best decision for Annabelle and that we can all come to an agreement on what she deserves. The only thing that I am standing my ground on, is that Annabelle will not attend school without her personal nurse. I do not see why this should be an issue, but our prayers are that everything does fall in line and works out.

Wednesday, August 3rd
Annabelle and I will fly from Washington DC and land in Cincinnati Ohio at 8:35am. We have an appointment with the Wheelchair Clinic at 10am where Annabelle will be fitted into her brand new, custom built wheelchair. They want to make sure the chair is a perfect fit for her and all adjustments are specific to her size and that she's able to maneuver it well on her own before we leave with the bill. (hopefully they'll also show me how to break this thing down to fit into my car!)

While we are there, I am also trying to schedule a consult with our GI doctor to touch base with him. We need to speak with Genetics to ensure our next visit in October will cover all tests that we need to do while were there. I would *love* to meet Motility but I know we can't get in.. their wait list is far too long. We do also need a follow-up with the Sleep Clinic from the Sleep Study we did while we were there last. That final report showed "88 episodes of arousal during sleep" and "78 PLMs noted". She's been given a diagnosis of 'Periodic Limb Movements Disorder', which could be the explanation of why Annabelle twitches a bit, never sleeps a full night without multiple periods of waking up and has daytime impairment where she's exhausted and falls asleep during passive activities. I would like an appointment to discuss our next steps/treatments for this new disorder.

In addition to those departments that I am waiting to hear back from, we also need to see Dermatology. The bumps that are covering Annabelle are unbelievable. I am terrified of this appointment for her. I hate that they're going to freeze/burn them off - she has over 40 bumbs at this point and they're all over her body. I don't want to hold her down for that procedure :( But it needs to happen.


Because I know I am asking for such last minute appointments, we may only visit the Wheelchair Clinic for the day and then spend the rest of our day together and visit the zoo or the aquarium :) We are scheduled to return for major procedures / appointments and another surgery in October, so if we miss our doctors in a few weeks, we will just catch them next time.

Later that evening, we will catch a flight from Cincinnati Ohio to Orlando Florida where we will meet daddy and Madelynne for an exciting 3-day visit with our friends in Florida.
I am so excited for Annabelle to finally get her wheelchair, it will bring her so much independence as a little girl and provide such relief from having to walk. I know she's looking forward to it and so are we :)

The summer is flying by! I wish time would slow down, don't you? I love spending the evenings by the pool with the girls. I love the long days of sunshine and cookouts. Time is moving just way too fast , and I wish it would slow down.. before we know it, the Christmas tree will be going back up !
 

Wednesday, June 29, 2016

My ABILITY is stronger than my disability

Since returning from Cincinnati, our hearts and spirits have been quite down in regards to Annabelle and her continued struggle. For years we have fought and exhausted our energy into finding better doctors, treatment plans, solutions and strategies to help her fight and conquer this battle she's been given. We have done our work, to the best of our ability, we've given Annabelle what we believe the BEST we can give her... but to learn that the disease is still out of control, we still do not have a definitive diagnosis and she is still in pain, it's exhausting and disheartening. 

As parents, we will walk to the end of the world for our children, but what happens when you do and it still doesn't save them? 
What happens when you pray so hard and so long but biopsies continue to come back worse? 
What happens when you spend every dollar you have for the top-notch hospitals, care and supplies, but she still suffers? 

If you have the answer, please share, because we're lost and broken-hearted.


All we know to do though, is enjoy life. We are striving to make life as 'normal' as possible, in the realm of our 'abnormal'. Annabelle wants to play T-ball like the rest of her friends? Well.. we bought the uniform, daddy coached, and she played T-ball. Albeit, she spends more time laying in my lap on the bleachers or sitting on the bases because her energy is too depleted to run; but she wears the uniform and she cheers with her team.




Big sissy is joining the swim team for our second year in a row - Annabelle wants to learn to swim better too.. so, Annabelle joins swim team! Is it reckless? Nah, not too much. Swimming is a great sport for her. It allows her to exercise DIFFERENT joints and muscles in her body and takes the stress and deterioration away from her hips/legs. When she tires, and she does very easily, she goes to lay on the chair under a towel and takes a nap while the rest of her team swims.

Madelynne and Annabelle love being on the same team together, not many sports share a team for all ages but swimming does. They of course compete in different heats bc of age, but our Swim Meets are the same night, their uniforms match and they cheer on one another from the side of the pool. Annabelle enjoys swimming and she's great at it. She's a fearless 4 year old, FEARLESS, so getting her in the pool and teaching technique was a breeze. It's both the Bishop Girls natural calling.

 

Annabelle about an hour after a swim, she didn't have enough energy to walk much, so she couldn't do her next 'heat' in the backstroke. We spent the evening walking around the pool instead :)


Annabelle with her nurse, 'Ms. Pat'. The two of these beautiful ladies are simply inseparable.
 


Our goals, from this point forward, are to live life as 'normal' as we can within our constraints. To allow Annabelle to enjoy life to the fullest and to continue to surround her with comfort, love, compassionate friends and celebrate our small victories.  


SCHOOL
I have to be honest, this is a hard subject and pretty much the reason why I haven't updated the blog lately.
Without going into much detail, because I do love our Elementary School that Mady has attended for two years, but were struggling with their cooperation and our needs for Annabelle. Our initial meeting with the school left our family walking away with significant fears. They were clear that our nurse staying with Annabelle during school hours was not permitted and that they wanted to conduct all their own testing to determine whether or not she warrants a nurses care while at school. Annabelle has been thru a battery of tests, all her life, and the very first thing I told them is that it is my wish is to not have to put her thru any more than necessary..... we left and were scheduled for a total of 5 different series of tests and assessments to complete between then and August 1st. We've completed two so far...



My heart sank for Annabelle. Even during preschool, if you assess her academic skills, she shuts down. She tells you "she isn't as smart as her friends, she's stupid". I hate all those words and we try to curb them - but that is her 4 yo opinion of herself. If we can avoid another person asking her to write her last name on a paper, counting by two's and listing the months of the year - all to prove she DOESN'T KNOW IT, than I will. She's hard enough on herself in school, and the series of tests they're putting on her is already putting a bad taste in her mouth about attending Kindergarten.

Medically, Annabelle absolutely, without a doubt, cannot and WILL NOT attend Kindergarten without her nurse attending with her. The schools approach was to entertain the idea of using their nurse, or bringing on another nurse to help Annabelle .... that simply isn't a logical solution. Annabelle's nurse has been with her for 3 1/2 years and knows Belle like the back of her hand; realistically, she knows Annabelle better than AK and I. We pose too many medical risks to not have our nurse Pat by Annabelle's side and as parents, we will not take that risk. This is a battle we will fight or we will not continue to pursue the public school avenue for Belle.

Wish us luck on this journey friends. This is hard and I have prayed every day that God gives me the strength, patience and insight into the Public School systems mindset that we can reach a mutual agreement on what is best for Annabelle. I am at their mercy when it comes to making academic decisions for her in the classroom (IEP / 504, etc) but when it comes to Annabelle medically, I am a pitbull in a room - I've spent almost 5 years advocating for this baby and will continue to do so the best I know how. I just pray that I am able to articulate my concerns and wishes to them in such a way they understand our families perspective and goals and we are all able to find the common goal and best plan for Annabelle.



Thursday, June 2, 2016

Hero



Have you ever met a hero?
They dress in entirely too tight clothing, sport a strong catchy name and sweep in to save helpless people. They're strong, not frail. They most certainly don't come in 48" 38lb packages with bouncing curls.


So how is it that this sweet little girl rescues me almost every day? Can a 4yr old be my hero?



The SHIELD she wears on the outside doesn't allow the world to see her brokenness on the inside. She looks tough and mighty, her veins are ridden with scar tissue but her adorable dress distracts you from seeing them. Her left eye and face is becoming more paralyzed but her precious smile covers it up. She has a SUPER CHARGED POWER PORT in her stomach that allows her to add a boost of extra power and nutrients while she's out saving the world. She's fueled with SUPERNATURAL STRENGTH that makes it impossible to keep her down. When she's supposed to be conserving her energy and preserving the health of her cells in her body, she chooses to pull of BMX Bike Stunts on her training-wheel-less bike, instead. Her PERSERVERANCE is stronger than the world expectations of her. She unexplainably defies the odds time and time again.






Have you ever met a hero? Because I think I made mine.. Annabelle is, without a doubt, my hero. She's the hero that I can't live my life without. She's the hero our community needs to remain humble.



This strong little girl wasn't supposed to make it to school age. Doctors asked us why we are even signing her up for school.. but, to our amazement, she continues to fight and graduated preschool last week. Friday she was registered for kindergarten. Annabelles nurse cried during the entire graduation ceremony, in pure love and admiration for how far she has come.. Annabelle and her nurse have a bond unlike anything I've ever seen. A more special and unique bond than I can even have with Annabelle, the two of them know one another and trust one another in such a way it's amazing.





This school year wasn't easy. Annabelle struggled most days to make it just 3hours in school, and although she still writes her name completely backwards and counts 11, 13, 18, 22, 23, 24.. She's still overcome more than her doctors and medical team ever gave her credit for. I am so proud of this little girl. A preschool graduation may be the only graduation she has, so it was very very special to us as a family to watch her so proud of herself. It was truly a hard, but wonderful evening :)





We met our principal, school nurse and kindergarten teacher last week during orientation. We also scheduled a Child Study for next Monday where we will meet with the school team, our nurse and AK & I to determine which accommodations we will need to make and have in place when she starts school in the fall. We haven't decided if we'll need an IEP, 504 or both.. I'm just now learning this acedemic / public school lingo and have a LOT more to learn.. Hopefully I get a good handle on it all next week.







Wheely-Chair Update
It's been 7weeks since we've met with OT at the Wheelchair Clinic in Cincinnati. Based on how Annabelle's overall health is going, I think we'll need to return to Cincinnati a bit sooner than we expected, preferably in August. It would be ideal to be able to pickup our wheelchair while there so I called for an update.. They broke the news that Medicaid will not participate or cover any costs for the wheelchair. We half expected this, but prayed regardless for the help. I was sent a form to sign that I acknowledge Medicaid will not be billed for the wheelchair and we will assume the remainder of any costs. I had the option to retract our order of the wheelchair and cancel it or continue and pray like high hell our other insurance will help at least some. Of course I choose to continue, but I would be lying if I said I didn't want to get sick when I saw the total cost and then cried.... The grand total for Annabelle's wheelchair, (no power, 100% manual chair), is: $7,938.91. Im not sure about the rest of you, but we most certainly do not have that money.  




Here's a quick rundown of the items on our invoice. Mind you, when you purchase a wheelchair, that's all you get, just the frame of a chair. Anything more than the frame itselt is a custom upgrade. Yes, so as you read this list, allow your eyeballs to burst out of your head and roll just like mine do at how ridiculous it is we have to UPGRADE her chair to get just the BASIC ESSENTIAL pieces that should come standard in the first place.



Wheelchair: $3,409
Footplate: $202
Spinergy Wheels: $1,061
Side Guard (to protect her hips/clothes from getting caught between the seat and the wheels): $197
Armrests: $224
Padded Calf Straps: 101
Swivel Anti-Tip Rear Wheel: $256
Posterior Back (seat back): $755
Transport Bracket: $264
Headrest Pad: $265
Seat Cushion: $432
Seat Belt: $114
Trunk Support: $99
IV Pole: $331



I don't know why the invoice left me in tears so hard, perhaps out of sheer frustration that we don't have the means to provide everything our daughter needs to keep her happy, semi-healthy and living life to the fullest - or if I was just so damn frustrated with the medical world that they rob families like ours and children like Annabelle from the necessities they NEED to survive. It's a sad, broken, corrupt medical world ... one I despise and hate being forced to live in ...



I signed the paper and faxed it back. Our chair is being ordered now and our fingers are crossed that it should arrive by August. We are hopeful that it will and we can make good use of our time while there (as we always try to do). Annabelle's body is failing fast and hard during this most recent relapse. She complains of pain a LOT, both while eating and during regular activities because her stomach is hurting so badly. She cries out in pain and is asking more and more often why she is sick and why God made her body with so many boo-boo's. She's getting older and explaining things to her is actually becoming more difficult. She doesn't settle with a simple answer any longer, she asks multiple follow-up questions and always looks for an optimistic fairy tale ending, "So when we go to Cincinnati NEXT time, they will fix the boo-boo and then I will be able to have pizza like my friends and I won't be sick anymore?" .... "no sweety....." :(


We are staying very close in touch to the team in Ohio and if things were to turn for the worse while we are here, it's understood that we will fly immediately that way where she can get the best care. For now, we are just allowing her to live life to the fullest and caring for her the best we know how.


She is our hero. Every single day she finds the energy to get out of her bed when her weakening body pleads for her to lie down. Every single day she finds a way to make our family laugh and remind us how blessed and grateful we are to have all that we do. On the worst day, a frustrating work day or traffic jam that causes everyone to run late, we struggle to give into the negativity.. life is all too short and too precious to allow anything other than joy and laughter fill our homes. Next time you're struggling, I challenge you to give a stranger a compliment, turn up the radio and sing... or if you're me, think about how much Annabelle has overcome just to be here today.. smiling.. laughing.. running and playing. When the world wants to drag her down, she laughs and skips the other way. Find the joy in everything, I promise - it surrounds you. You just have to look for it. I found mine.... she's asleep right down the hall...



Thursday, May 12, 2016

Smiling thru the tears


I've drafted about 5 different blog posts. I have posts that were drafted while we were still in Ohio and then another that I wrote on our drive home. But I cringe with every word I have to write. I want to share how the rest of our week went after the procedure, but the truth is that it was awful. I am so, SO tired of updating here just to share with you that we aren't doing well. I hate it!


Above anything, I don't want to share the post that I am about to share. It's updates like these that rob our family from the lies that 'were living happily ever after' (what a tricky lie we tell ourselves, to enjoy the moment). We wear a smile until the truth is revealed and all that happiness is stolen from us because of this awful frickin disease! I hate it, I hate it, I HATE IT!


The skinny on our update is that the rest of our trip in Ohio took a traumatic downhill turn by Wednesday morning (2am to be exact). Annabelle began showing signs of bacterial traechitis which landed us in the Emergency Room. This was a result from the surgery and the anesthesia team changing our anesthesia plan mid-surgery without mine or AKs consent. They performed a new procedure on Annabelle that we never would have approved and the result was the irritation and damaging of her trachea. Those wounds were then exposed to bacteria that resulted in an infection that her body struggled to fight.


By Thursday, we were able to perform the Sleep Study. Annabelle did wonderful while being hooked up but she hated the nasal cannula. Once that was placed and taped securely to her face, she was able to cry herself to sleep. She wanted that thing gone more than anything and we couldn't help, we couldn't hold her because of all the tubes and wires she was connected to. We couldn't lay in the bed with her because of the monitors. She had to be left alone, still and immobile to sleep the night by herself. She was still trying to recover from traechitis, coughing, gasping and moaning. God she was just a mess. It was a hard night for all of us, AK nor myself slept at all that night.







Friday was the day we ordered her wheelchair. This process wasn't as painful as we expected it to be once we got in the room. The OT and Vendor quickly led us thru the process of selecting the right chair for Annabelle. Our requirements were:
  • Lightweight enough that Annabelle can push it alone
  • Frame can adapt to add power options to the chair later, if we need
  • Collapsible so we can transport it in our current vehicles
  • Sized appropriately for Belle now and will also last us 5 years (insurance will only allow 1 wheelchair every 5 years, so it has to fit her hiney now all the way until she's 10yr old!)
  • Versatile so we can personalize it to our needs
What we landed on was a chair called a Ti-Lite, Twist. Annabelle choose a purple frame and hot pink seat. http://www.tilite.com/chairs_twist.php






Once we choose the wheelchair itself, then came time to customize everything that Annabelle needed for it to serve her.
  • Transport brackets to allow Annabelle to be transported in the chair (school bus, metro, etc)
  • High back seat cushion. This is necessary when transporting and will also provide more comfort for when she needs to rest.
  • Hip protectors. To prevent her clothing, fingers etc from falling into the wheels right beside her hips (This is about the moment I began asking why the hell do chairs NOT come with most of these things?!)
  • IV Pole. To hang her feeding tubes, pumps, bags and fluids.
  • Removable, washing seat cushions. Having a child with a GI disease = lots of messes. Why wheelchairs don't come with removal seat cushions and washable inserts, is beyond me.
All these things were upgrades to the standard chair. Our #1 upgrade that we did opt to do were Annabelle's wheels. We bought our baby 22's!! haha ;) The wheels we upgraded were significantly lighter which allows the chair to become much lighter to push for Annabelle (and us) and also to lift to put in a vehicle. Since we upgraded to the low-profile, lightweight wheels, we were also able to angle them on the chair to allow Belle to be much more comfortable when resting her arms beside her when pushing the chair. You wouldn't believe the world of a difference this made for her. I am so happy about this upgrade (but holy crap, the cost was painful).

We choose NOT to add power to the chair at this time. Honestly, it's just so expensive and we can't afford it. The wheels that deliver the power were too heavy for us to lift (well me, really. It made the chair almost 100 pounds!) and, it was a bit too tricky for Annabelle to use. We also didn't like the way it forced her to position herself and her arms in the chair to use it. At a price tag of additional $7,500, we couldn't do it.

This wheelchair, while it was painful to accept, build, order and purchase; I know will provide our little girl with more independence and the cause for so many smiles to come. She will be able to keep up with her friends, play and laugh along side everyone again. As a parent, I look forward to not carrying her everywhere we go, I look forward to knowing that if she wants to play and run for a minute, that when she crashes and cannot stand that she will have her chair beside her to help keep going. As her mommy, my heart SHATTERS that my 4 year old is going in a wheelchair, but it BURSTS that our medical team was wiser than I and made this decision on behalf of our family. I know we will love it and own it, just like we do our adjusted lifestyle and feeding tubes. It will quickly become part of us . . . . the road is just a bit wee bit intimidating.



So that was the short summary of our week, except our GI Follow-up...


:sips wine:


:gulps wine:


I knew it would be bad when Dr. Putnam ignored my very first question to him: "How do the biopsies look?" He response was, "She doesn't have any active disease in her colon.. but we need to talk about it. Her colon is extremely dilated and damaged.."




AK and I anticipated this, as in her lower GI, being a large part of our conversation during this visit. We listened with open ears, but a pounding heart.



What we're dealing with is something called, "Involuntary Encopresis with Chronic Constipation". Basically, her damaged body doesn't know when to pass stool, so it holds onto it and as the stool builds up, it stretches her colon. By the time she is so 'backed up', the stool is entirely too large for her to pass on its own. In between the times she has a BM, some loose stool/fluid will leak around the impaction.. resulting in leaking stool, constantly (very frustrating for us all).



We don't have a lot of options with how to address this new diagnosis. But we choose to give it our all and attempt to repair the damage done to her colon, without having to remove it. AK and I are committed to working our asses off at home for our daughter, in an effort to avoid more loss of her poor little bodies function. Our homework is to clean out her GI system, FULLY, every 24 hours. It's been years since we've attempted to do this at home, but over the last month, with the help of a LOT of drugs, we've actually been quite successful. We are disappointed to have her back on medications, but I am relieved to see they're working and Annabelle is able to get a bit of relief. 



The downside is that it takes 6 months to repair the amount of damage Annabelle's body has done to her colon. If we fall off the bandwagon and something happens to where she doesn't fully empty her colon every day, the clock restarts for another 6 months. Unfortunately, we've been given only 6 months to make substantial progress before her medical team moves to next steps of intervention.

When we return to Ohio, we will follow-up with the Neurogastroenterology and Motility Disorders Clinic where they will help us navigate our next steps in treating this newest diagnosis. Our goal is to be able to alleviate how dilated her colon already is by emptying her GI daily, and then when we meet our new doctor and based on the surgical report, we will be able to repair the damage that is already done by performing Botox Treatments to the damaged areas. That is our stretch goal, rainbows in the sunshine, perfect happy ending, goal. If we fall short anywhere below that, we are looking at removing Annabelle's dying lower GI system, just like we did to her upper GI, 2 years ago.


Then, we got on the subject that makes me nauseous to even reflect on.

:finishes bottle of wine:

Dr. Putnam: "I am really sorry. But the biopsies did show eosinophils in her esophagus and the active disease has returned."

Those are some of the hardest words to ever hear.

.. this means our mission for finding Annabelle's diagnosis has just ended. It means we cannot keep searching, testing, meeting with doctors and narrowing down our search window. We get skewed and pointless results if Annabelle has relapsed, and that's where we are..

.. this means we've lost control of her disease once again. For 10 solid, fun-filled, happy months, Annabelle was free from this disease, and now it's back. We have absolutely no idea why it's back or what has set it off. And honestly, it doesn't matter anymore.. it's back..

.. this means a clock starts ticking again. A bashing loud, haunting you from your dreams, robbing you of laughter, fogging your wishes for your baby, awful fucking clock is ticking..

.. it means we stop, refocus, reflect and live for right now.

That's what those words mean to our family. We left Cincinnati, Ohio with no treatment plan or advice from our medical team. We came home to a quiet home, surrounded by loved ones that were happy to see us home but blind at the news we had just received. We came home to continue to live life the best way we know how.

It's been a month and we are still adjusting. Last week we took the girls rootin' / 4-wheeling in the mud. The somber depressing rain was drowning our smiles that were already hard enough to find, so we decided to make fun in a horrible situation. We took the 4-wheeler out and played. The look on the girls faces when mommy and daddy began having a mud fight, was priceless. We were all filthy, but we had such a wonderful time.



I've called the school to begin the process to get Annabelle registered for Kindergarten.  Honestly, Annabelle hasn't even made it to preschool much in the last month since we've been home. She's made it to school about once or twice x week but doesn't seem to have the energy to attend much more than that. In the grand scheme, she doesn't need to go but she wants to ride the bus and be like her friends.. so darnit, she's going.


She sleeps late in the mornings and tires very quickly. Her mood is shifting a lot too, she's angry and frustrated with us nearly all the time, her patience is so thin which tells me she is uncomfortable and in pain. She cries almost every single day that she hurts, and I just can't imagine what she must be physically enduring. Her tiny body is failing her and rotting from the inside out, and all we can do is give her a hug and remind her how much we love her and how strong she is.


I don't have any inspirational words, I don't have a happy ending to close this blog post and I don't have any promises to anyone. But I do have a prayer.


My prayer is that you love one another. That you see the best in one another, even if that means you have to dig down deep to find it. My prayer is that you don't spend your lives in frustration, guilt or anger but that you spend it building and loving the ones around you.
My prayer is that you consciously seek to find the beauty in all situations and not take a single day for granted with those that you love.
Sit down, listen to the children around you, have a conversation with your grandparent and hear what they have to say, be still in the chaos and appreciate how alive the world is around you.
In the blink of an eye, your life can ground you so quickly that it makes you physically ill, every minute you live without smiling and appreciative in this life, is a minute you won't get back.
Hold your babies when you're together.
Walk away when you want to scream, but run back for a hug and kiss when you're collected.
Watch them sleep with their eyes closed and their chest rising and falling.
Feel their warm skin and drown yourself in their giggles.
Remind them you love them, every single day.
Pray for them, with them and to them.
And as a friend, my prayer is that you will always support one another even during battles that you don't understand. That you will allow yourself to be selfless in your friends needs and love without judgment.
Above all, laugh, enjoy the company around you, cherish your blessings and know that in the end, you led a life with no regrets, you loved without holding back, you respected yourself and family enough to fight for it and you're grateful for all you have.