Annabelle's Going to School!

We WON!!!!!!!!


It hasn't been pretty.
It hasn't been fun.
and it SURE hasn't been easy.


but baby girl is headed to Kindergarten!!








We met with the school again this past Wednesday. Before the meeting, AK, our nurse and I discussed our game plan, what we would settle for and which aspects of the agreement we will not budge on. I have spoken to so many professionals, medically and academically, parents and family over this situation, so I felt confident in what we were asking.. but I also confidently felt like we would lose. I refused to budge on what Annabelle deserves and if that meant we walk out of the school defeated and entertaining the idea of home-schooling her, than so be it.

 

Fortunately, the Health Services Coordinator for the county recognized Annabelle's daily needs as far more cumbersome than what the school nurse would be able to provide and she started writing down notes. The further we got into our discussion on Annabelle's needs, the more solid the team felt that the best avenue for Annabelle in the public school system would be to develop an 'Individual Health Plan' that essentially outlines our daily Plan of Care (that we already keep 100% up to date with our nursing agency anyway). Our private duty nurse will accompany Annabelle to school every day and carry out all her daily needs, just as we do at home (medications, tube feedings, venting, vitals, assessments, more meds, more feeds, more vents etc etc etc).

The 504 Plan outlines the classroom accommodations. The plan protects Annabelle and will allow her:

• to be released to her private nurse for any and all medical needs such as feedings etc
• preferential seating close to instructions (ADHD)
• visuals or manipulatives to sustain instruction (ADHD)
• rest / nap in the school when tired. If this doesn't help, she will be released from the school without penalty
• reduce work such as half an assignment
• use her wheelchair to lunch and all resources (were hoping she won't need or use it much in the classroom)
• adult support during field trips (her nurse)
• access to the bathroom whenever necessary
• to eat or drink when needed
• absences, early dismissal and tardy days without penalty
• alternate arrangements for classroom time missed due to school outbreak, hospitalizations or illness. school will provide a teacher into the home for 6-8hours of instruction x week missed of school.
• wear a face mask to protect from germs
• school will provide an immediate update anytime their is an influx in illness in the school (cold, flu, virus etc)
• permission to switch to 1/2 school days if we find the full day is too much
• special transportation to and from school and during field trips 

I admit, I did get upset during one point in our meeting. My emotions were just too heavy to hold back and silent tears found their way dripping from my chin. I had walked into the room fighting so strong for Annabelle to get the individual medical care she needs because she is so unique.. but when the time came to discuss transportation and her wheelchair, suddenly I found myself resisting those accommodations. This is pathetic, I know, so please don't judge... but the vision I have for my little girls, both of them lined up waiting for the bus on the first day of school is forever gone. That day that I dreamed about when Mady would take her baby sister under her wing and sit beside her on the bus, and when they get to school she would make sure her sissy gets to her classroom okay - that isn't our reality. Our reality is that Annabelle will wave as her sister and all her friends get on the school bus in the morning and Annabelle will wait alone for her own special needs bus that can transport her in her wheelchair. She'll be alone. Her experience will be vastly different than what I want for her. I want her to have as normal as possible of a school experience as she can, but still remaining safe. I don't know... the words I type ramble just as much as the thoughts in my head, but my heart is hurt. We continued the conversation about the special needs transportation and then carried it over to field trips - on those occasions too, she won't be permitted to ride with her friends, she will ride alone on the special needs bus and meet with her class once they arrive.. Their first field trip is to the pumpkin patch, and I thought "There's no way she can ride around in a wheelchair to the pumpkin patch. And even if she walks, there's no way she can make it the hours they will spend there... the first field trip of Kindergarten will be a disaster" - and my heart sank again.

All things considered, AK and I are happy. We are so relieved that Annabelle will get the opportunity to have a classroom experience just the same as the rest of her friends, but we are cautiously nervous. I am terrified beyond belief over the germs in the school and how she will handle the cold/flu season.. and my mommy heart panics for her as she will for the first time be thrown into a classroom and big school.. surrounded by kids in the hallways, lunch room, recess and extracurricular activities and she'll be in a chair. she'll be wearing a face mask. she'll be hooked up to feeding pumps. she won't have the energy and endurance to keep up. My heart hurts that she will identify herself as vastly different and be ashamed and discouraged of who she is. These are all thoughts she communicates openly with us and it kills me. I want her to have fun, I want my baby girl to laugh, run and play. I pray with everything that the kids are not cruel but are welcoming and loving to her. Kids can be so, so mean and Annabelle doesn't deserve that type of judgment at this point in her life.  I want her to shine and excel, I want to see her confidence burst.

We are happy and we won a huge battle this week... but now, I'm scared to death. I wish I had as much courage as Annabelle...

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..

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. 

 

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