Patch Testing, Day 2.

I underestimated how yesterday would go for Annabelle. I promised her ‘No Pain, No Boo-boo’s’, and I lied.

Mady has been struggling a lot more lately. She is going thru an equally hard time adjusting to the chaos of our life.. and I don’t blame her at all. Sometimes she acts out for attention, sometimes she will do things that she knows will make me mad, most times she will color or paint me pictures while we are gone “So I don’t forget about her when we are at the hospital” (heartbreaking!), and finally, this week she sat down and started crying her little eyes out. I begged her to tell me what was wrong and she finally spilled her little 4yo heart out “You don’t love me like you love Annabelle. You don’t play with me anymore and you only talk to Annabelle. Annabelle is daddy’s best friend forever, and you are MY best friend forever..” My heart literally crumbled. Mady has actually gotten more one-on-one attention than she ever has before, but both our girls are being divided like that – Mady gets to stay up later and cuddle and play with us, I take dates out with her often and do secret stuff that only girl BFF’s do, but Mady also recognizes that every single day mommy comes home from work and has to gather Annabelle and all her things and fly out the door.. while Mady is left at the house and waves goodbye from the front window. I know it’s hard on her, I’ve known since all this began that it would be a really tough balance, but none of that prepares you for seeing the tears fall because your Four Year Old’s HEART is hurting so badly.

I worked yesterday morning and wrapped so many things up, I thought my head would spin off my shoulders. I kept playing over in my mind everything I needed to get done yesterday: I needed to make several phone calls, I needed call a couple hospitals about bills and invoices, I needed to jump on another prescription battle between physicians / insurance company, road trip to Chesapeake, pack diaper bag and gather notes for the doctor, etc. On the drive home my stomach sank when I pictured Mady with the tears falling off her face as she waves bye-bye thru our glass door and I am driving away with Belle. A light went off, “She’s going with me today!” I got home and began gathering things and pulling up driving directions online, Mady knew the drill.. she knew I was running around and getting ready to leave and she started getting sad. I turned around and said, “You know what, do you want to go to the hospital with mommy and sissy today?” Our sitter dropped her jaw – I looked at her and said “yup, you too lady! Were all going today! We all get to take a road trip together and see what a day is like for Baby Belle, who is ready to go?!” Everyone ran around like crazy and within less than 5 minutes the car was loaded and we were East Bound towards Chesapeake.

 

We hit the road a little later than I planned.. I take that back, we got on the road exactly what time I did plan, but I was completely backwards as to where Chesapeake actually is. A big ‘DOH’ on my part. For some reason I was thinking Chesapeake was between Williamsburg and Norfolk.. it’s actually further than the CHKD Hospital instead of much closer. Dr. Maples wanted us to meet at one of their satellite locations, which I certainly appreciated to not have to navigate downtown Norfolk – but I just didn’t think it was 2hrs away!

Anyway, I decided to take 460 and made up some time. We ended up arriving with only 3min to spare, so it wasn’t too bad. We checked in and were immediately taken back to our room. It was a very quick process once we were in the door. 

The nurse hardly asked any questions and I undressed Annabelle so we could take the patches off. Here’s the thing: I never, ever even considered how bad these patches would be to take off. And I am kicking myself for not thinking about that! How could I overlook something like that? When you cringe over the thought of ripping off a bandaid – quadruple that pain, and Im not exaggerating. If you’re a woman and had an epidural – Do you remember when they ripped that tape off your entire back? The clear, tape stuff that they use to cover an IV site is very similar to what covered Annabelle’s entire back. And not only was the tape bad.. but she wore it for two days and was hot hot hot, sweaty to make sure it melted good into her skin so when we ripped all this off – it took her skin with it. My goodness, it was beyond painful to hold her down, I just know it hurt so bad! The nurse removed most the extra taping around the edges, but when it was time to remove the actual patches, she didn’t have enough nails to really pickup a corner. It was taking so long, and poor Annabelle was sweaty and fighting with every single thing she has, begging to be put down. She was crying so hard and I just knew she was miserable.. the process was not short lived, It. Was. Taking. For. Ever!

Finally our sitter stepped in and instead of helping me hold down Annabelle, she asked the nurse if she could help remove the patches, our sitter had tiny nails, just enough to grab the tape and pull them. She was able to remove all the rest. As soon as she started to pull the first row of patches, she paused, I thought she had stopped – the sitter later told me that she had to recollect just how hard and strong the tape was and she had to rip with all her might to pull them off!  

Madelynne was standing right in front of all of us, watching Annabelle in terror. I kept telling her “It’s ok Mady, do you want to rub her leg?" (because that’s all she could reach), and she did.. Mady didn’t seem terribly upset, she just seemed very curious and concerned for her sister. On one hand, my heart broke because I don’t want Mady to have to witness her sissy like this – and on the other hand, there wasn’t any blood this time, there wasn’t a million doctors and a procedure being performed, just lots of crying and plenty pain – While I always want to shield my babies from seeing something like this, I also wanted Mady to understand what her sister is going thru. I wanted Mady to understand “when mommy has to take Belle to the doctors, we are not going to a play place without you – there are not lollipops and giggles that you're missing, and when mommy and daddy have to jump because Annabelle is in danger, it’s because your sissy is really sick and she does need our help.” I am actually grateful that Mady (unfortunately) had to see what happened. She was very sympathetic to her sister after it was all over, she gained a tremendous amount of patience for her immediately and seemed to appreciate how much we were helping Annabelle after the process was finished – she also needed to see that mommy is here to help Annabelle, just like mommy is always there to help her. It was a good learning experience for her, and probably the best timing to expose Mady to what Annabelle is going thru on a daily basis. I am grateful for yesterday in that respect.

Once the patches were removed, we had to spend a lot of time marking her back in every area the tests locations once were – using a pen. It didn’t matter if you were just looking at Annabelle’s back or trying to mark a dot, she didn’t want anyone near her. It was quite uphill from there, but again, I don’t blame her. Fortunately we all knew the painful part was over and soon the doctor was joining our room to do the first reading. So far, only 4 things were already showing positive for a reaction, those four things were ones we already knew of: Milk, Soy, Wheat and Oat (I believe)..

Finally it was time to go, wahoo!!! Annabelle was less than thrilled, she was so very ready to leave. Her poor body was beyond exhausted. We did not have to reapply any patches, we just have to keep everything exposed and absolutely no water or washing anything off. The next reading is Friday at 1:45p at the same location in Chesapeake. Fingers crossed for positive results. And hopefully we can have conversations about when we can start food. I cannot, CANNOT wait until the moment I can feed my baby food, oh gosh I am so excited!!!

Dr. Maples did inform me that CHKD CAN do testing for Mitochondrial Disease. A surgeon will perform the biopsy’s in the OR and Pathology has the ability to read the results and do the testing. Now, the only thing I need to do is find out what doctor can order those tests and see if I can get Annabelle seen by them – I am filling my pediatrician in on all this currently and hoping she isn’t still too mad at me to listen. I’ll do whatever I can, and if this is the soonest I can get answers for my baby girl – so be it. It’s done.  

My blood is boiling.

Here’s an extremely high level of what has transpired over the last two days.

Dr. Teasley and her team are making our next steps forward, very difficult. She is not willing to see Annabelle before the August 22^nd appointment, despite her calendar presenting several available openings between now and then. Annabelle has the most incredible, beyond belief Prayer Warriors out there, cheering her on and doing anything and everything we can to find answers and help for this sweet little girl. It appears Dr. Teasley is not a fan of these efforts and has contacted my pediatrician personally to discuss how unwilling she is to accept Annabelle’s case. She pulled Annabelle’s records from the very beginning when we left the NICU and is now taking a step backwards and finding explanations as to why suddenly Annabelle is ‘so sick’ and all this has just begun. My pediatrician called me and is also frustrated because there is nowhere in Annabelle’s previous records that show concern regarding her growth and hitting milestones. My blood began to boil and my eyes flooded with tears, “Im sorry – I’m not following you right now. What exactly are you trying to tell me? What is your point and what are you trying to say?” Basically, all these issues are not noted in Annabelle’s records at the pediatricians office!

My jaw dropped. I tried hard to collect my thoughts and tap into a memory of almost two years ago.

I began to run off SO many scenarios that I have consistently brought up to our pediatrician. This is not my fault or responsibility to ensure they are all noted in her records, but I am confident they were all discussed.

• Countless upon countless trips to the pediatrician regarding Annabelle’s feeding issues, beginning as soon as she came home. I cannot begin to tell you how many days, almost every other day for weeks that I would sit in the pediatricians office and let Annabelle scream her head off until they helped me. They switched her formula so many times and pressed back on me trying to breastfeed, finally I demanded to see a specialist and that is when we found blood in her stool testing positive for both a milk protein and soy allergy – Annabelle was immediately moved to an Elecare based diet only and starting that day she stopped screaming and finally rested.
• At her 9mo checkup, I mentioned Annabelle wasn’t sitting up or crawling yet. It seemed all the other babies her age were doing so and she hasn’t shown any interest at all. She’s moving behind everyone else, is everything ok? 
• At her 1yr checkup, Annabelle wasn’t showing any signs of standing or being ready to walk. I was trying so hard to give her credit for being two months early, and also trying not to compare Annabelle to Madelynne’s milestones. The pediatrician and I discussed my concerns and he reassured me everything was fine. Annabelle was growing well, she was progressing and very alert and he had no concerns. Him and I discussed Annabelle’s progress a lot and I left the office feeling rejuvenated as Annabelle would just move at her own normal pace. And to be honest, I didn’t want to rush it. She will be my last baby and I want to enjoy every minute of seeing her crawl around. I didn’t think much else about it. After all, it wasn’t pressing or serious that she was behind, it was just odd to me.
• Every single week, many times multiple trips a week I brought Annabelle to the pediatrician from Christmas Eve thru mid-March. She was sick, so sick and nothing was making her better. We tried multiple rounds of prednisone, antibiotics and different regimens to help her. Finally I was profiled as one of those parents who habitually brings their child in for the same complaint when I really just need to stay home and allow it to run it’s course. After the comment was made, I scheduled an appointment with our GI Specialist – he performed an Endoscopy a week later and delivered our explanation for the last several months illnesses and diagnosed Annabelle with Eosinophilic Esophagitis. 

From that time in March, we have rarely been back to the pediatrician at all. On many, many occasions I have considered moving PCP to another office but I just hadn't made the effort to do so. I really liked Dr. Young when I got to see her, and the next time we actually needed to see a doctor, I requested to see her vs. who we were previously seeing. That is the moment all this began. She immediately took the bull by the horns and listened genuinely to my concerns. She raised her own concerns with Annabelle and her growth charts, she ordered labs and held my hand that "You're right mom. Something is going on.. we need to figure this out."  At that point I knew I wasn't crazy, I was so relieved that someone could validate what I was feeling and what "Just isn't right.. something is wrong with my baby". We have been working together this entire time, but until Dr. Teasley pushed back, Dr. Young finally put her own set of eyes on Annabelle's previous records and we started to find missing blanks. I am furious, but also so very confused. "Do you really mean to tell me that just because it isn't specifically noted the conversations that I had a year ago about whether or not Annabelle was hitting milestones, that those things really have an impact on whether or not she is sick right now? What different does it make?" To be honest, I didn't think twice about those concerns that I had a year ago.. they were not raising red flags for me then - perhaps they help pull pieces of this puzzle now, but just because they are not on record, doesn't mean Annabelle isn't in danger right now. 

Most our care was handled not in a pediatricians office, but in our specialists offices over the last couple years. When I felt the resistance from our pediatrician, I took the approach to only use them if I suspected an ear infection / strep throat or something similar. If I had growth, weight, GI concerns, I booked an appointment with our specialist. I learned very quickly with Annabelle to go directly to the source to get the help that I need vs wasting time with others that will not be concerned. Apparently this is biting me in the butt right now, because my GI is not driving this journey - my new pediatrician is. Im so upset. I feel like no matter how hard I've tried to help Annabelle, somehow I keep falling short and hurting her. This is the last thing I needed.

Since Dr. Teasley is putting Belle under a microscope with the mindset 'she isn't my patient, I don't have to see her', she is still looking for every plausible excuse as to what could be happening vs. helping us find answers. Dr. Teasley has pushed back once again and we have been handed over to Dr. Seinfeld. 

Dr. Seinfeld is the Neurologist that we saw a couple weeks ago that was less than a help at all. I wasn't happy when I left her office - she spoke to me about everything Annabelle doesn't have, and then asked me not to even book a follow-up appointment. I can see this going over well already. 

I spent my afternoon yesterday, absolutely torn to pieces over what is happening. I do not understand to save the life of me, how everyone wants to look the other way and not help Annabelle. This little girl doesn't deserve this.

I let every tear fall to the ground yesterday when I was on the phone with Dr. Young, she kept telling me "Ashley, I've got this. I am doing everything I can. I am finding you doctors.. we just have to sit back and be patient, we have to relax and just wait for them to see Annabelle." 

While I know she means well, and I trust she really truly does, this isn't at all what I wanted to hear. "You are a mom, you wouldn't stand for this! My little girl is SO sick and she doesn't deserve to be pushed to August 22nd before she gets attention! YOU WERE NOT UP WITH HER ALL NIGHT LAST NIGHT LISTENING TO HER SCREAM!! YOU don't have to see the face she wears when she is scared out of her mind before a seizure takes over her body! YOU don't have to fear every single night what the next symptom will be! Annabelle and our family needs answers. I promise you this, she has the most incredible, fierce team of people standing behind this little girl and we ARE trying to follow your lead. The army of Prayer Warriors and cheerleaders Annabelle has is so intense you wouldn't believe it. Listen to them roar and let them help us! We have to do something, and we will do anything to help Annabelle. Please let me trust you.."

Dr. Young listened and talked with me for quite a while. She agreed to call and personally speak with Dr. Teasley and the team again. She said she would do whatever possible to gain another step forward.. and she did.


Pediatric Neurology at the Children's Hospital called a few hours later and has agreed to admit Annabelle. 

They are admitting her into the Epilepsy Observation Unit at MCV on August 1 - August 2. They will be repeating another EEG with video surveillance to  monitor her seizures for 23 hours. This is Dr. Seinfeld's next plan. Depending on the results of this next test, Annabelle will be picked up by Dr. Seinfeld, or seen by Dr. Teasley. 

There are three other things (diseases/disorders, etc) that have been brought to light during discussions between physicians. I cannot remember what those are, but I believe I have them written down somewhere. There are a couple other tests involved to see if they are explanations for what is happening as well.

My prayers today are praying for full relief from whatever is consuming my little girl. I feel like she is being wrapped so tightly in this illness and is beginning to become robbed of the life she deserves. With each day I see her drown a little deeper into the darkness of what is happening and I am praying with everything I have for total relief from this. I guess I am praying for a miracle for my baby girl. I don't want understanding, help, guidance.. I want a darn miracle for my baby!

A step back - I do need some things... I do need patience and strength to not lose my mind over doctors and the healthcare system that is failing my child. We have big, big big problems with our healthcare system. I wouldn't see them from the surface if I were just an everyday patient with an ear infection - but when you get dealt with a crisis such as this, I cannot begin to tell you how greatly devastating the insurance companies and doctors can tear apart your life. When all this is said and done, I will have a lot of work cut out for me to clean up the messes I am making on this rough road for answers. I have uncovered so many ugly patches in the healthcare and hospital system that I never knew existed. That is for an entirely new post.



Today I packing the car once again. Making my usual round to the gas station before getting on the interstate and heading 64E back to the hospital. We will have Annabelle's patches taken off and read, I do not know if they will be reapplied afterwards or what the plan is. But she seems to be doing very well. They haven't seemed to bother her much at all and I am so grateful for that. Just looking at her poor back, I know it would drive me insane.. but Annabelle is a different story - that little girl is a rockstar, nothing can slow her down! I am praying for safe travels today along the roads, and hoping to spend some much overdue one-on-one time with my Madelynne this afternoon. Her and I both need it. AK should be slowing down at work tomorrow, fingers crossed, so he will be able to be home with the family more and try to plan for something fun for us to do. We have all been moving so quickly around one another and hardly speaking to touch base - I am hoping for some slow, relaxing time this weekend, all happy smiles and no pain. Fingers crossed!

Busy Day at CHKD - Patch Testing, Day 1

Inhale. And now, Exhale.

I’ve been doing that a lot lately.. a LOT – conscious deep breaths and forcing oxygen thru my body in hopes it will protect the tears from falling and allow me to communicate without a tremble in my voice. Some days it works, some hours / minutes it doesn’t, but hey.. we only have to take this one moment at a time, no more.

Yesterday was very long but I would chalk it up as a Good Day. I cannot begin to tell you how excited I get to be able to write those words. The day came with a few hiccups, but Belle and I triumphed thru.

I decided to work all morning and leave just in time to pick-up Annabelle and head towards Norfolk. We got on the road about 11:30a and arrived at the hospital shortly after 1pm.

The drive towards Norfolk was tough on Annabelle this time.. she was feeling alright when we left and trying to drift off to sleep, but then she began screaming. My mom called during the time which made the conversation difficult to hear over Annabelle’s screaming and thrashing around in the carseat.. finally, like a switch, she stared off with a blank stare and she went out. I could reach back to her carseat and made sure she was breathing but she wouldn’t wake up. I don’t know what was happening, I don’t believe there was ever a seizure during that time but whatever it was terrified poor Annabelle and was causing her tremendous pain. This isn’t unusual anymore at all, this is becoming routine and nothing about it is getting easier to watch or experience.. and that’s me talking, I’m not even in Annabelle’s shoes! Sweet little girl, she is so strong and tough.

Checking in was a breeze as always and we caught the elevator to the 4^th Floor. There, we checked in for all our appointments at one desk and they informed me that the nurses in each department would be communicating with the nurses where I was and when I was moving between doctors. So efficient!

We began in Allergy with Dr. Maples.

Before I could put Annabelle down to play with toys in the waiting room, the nurse was already calling her name. We proceeded to the back and as soon as Annabelle saw the scale she sat on her bottom and took her shoes off.. stood up and then stood on the scale watching the nurse. She cracks me up. After that, Annabelle walked towards the measuring stick on the wall and backed up with her feet to get her height. When the nurse picked up the blood pressure cuff, Belle lifted her left leg and when she pulled out the thermometer, she raised her arm. The nurse was absolutely cracking up and thanking ME for how easy she was making this process… I on the other hand was dying inside that my 22 month old knows this drill like the back of her hand. No child should know this routine. Ugh, we have got to get out of the hospitals soon!

Dr. Maples joined us in our exam room and wanted to know what had been happening lately. I gave her the condensed 3 minute run-down and her and I discussed plausible explanations for what was going on. She immediately said, “Have you considered looking into Mitochondrial Disease.” My stomach literally sank so fast I paused for a second and had to hope I wouldn’t get sick. I’ve never felt my stomach drop like that before. I told her “Yes, however we are struggling to get an appointment sooner. The soonest MCV is willing to take Belle isn’t until August 22^nd” Dr. Maples looked at Annabelle and sighed with a concerned look across her face. She asked me to hold on and she left the room. When she came back, she told me that the only physician at King’s Daughter’s that may be able to help is a Geneticist.. unfortunately, that doctors partner passed away last night so the entire department is struggling right now and she couldn’t promise that even if this Geneticist was willing to see Belle, that she would be able to do so before August 22^nd because she is picking up double patients right now. She would be meeting with that team in the afternoon and we would discuss any headway when I see her again on Thursday. While Dr. Maples was examining Annabelle, she looked at me and said, “You know what?! I have two patients, they’re both siblings, they both have very bad EoE like Annabelle and they both have Mitochondrial Disease. Hmm..”

Dr. Maples decided to do a full panel of Patch Tests vs. only what passed during the Skin Prick Test last month. Our goal is to find as many foods as earthly possible for Annabelle to have. If things begin to take a turn for the very best for her, we will continue to slowly do Food Trials, one food at a time. . . we will have options for both scenario’s when it comes to food. . .

Placing the Patches isn’t painful at all, but Annabelle wasn’t a fan. She just doesn’t like being held down.. I don’t blame her. It was a fairly quick process, no more than 10 minutes total to get everything in place, marked and taped. 

Next we spoke with the Pulmonologist – there wasn’t a pressing reason why we needed to see him beside the fact that we would be entering the fall / cold / flu season in the next couple months and we needed to discuss the risk factors and seriousness of Annabelle getting sick during this time. We talked about what to watch out for, ways to protect Annabelle and our home and when to contact the doctors vs. going to the hospital. It was a quick chat but I am glad it was proactive to take place now vs. in the midst of the flu season.

After patches were in place and all our chats were finished, the nurse told us that Gastroenterology had been contacted. We packed our bags and headed down the hall to meet with Dr. Konikoff. Repeated the usual: weight, height, blood pressure, temperature, pulse, etc. Then we made our way into a room. Dr. Konikoff joined us shortly afterwards. For some reason, the moment he came into our room and shut the door, Annabelle decided that was the time she was finished being patient for the day and wanted to turn her attitude up a couple notches to prove just how much of an almost-two-year-old she is :) I welcome the attitude though, no, im not proud of it but right now I embrace every single emotion and opinion the kid has – she deserves every bit of it! She is still very well mannered and in no means a terribly behaved child at all, but if she wants to have a tantrum, so be it. I am happy to stand over her with my arms crossed and talk to the doctor like nothing is happening around my ankles! 

Dr. Konikoff and I discussed several topics:

• Food - I meant to ask Dr. Maples if/when we would actually be able to introduce the foods we were testing for.. and if so, how many would we begin with. The usual route is to try two foods at the most, allow Belle to have those in her diet for the next 6 weeks and then rescope and rebiopsy her GI system and look for any signs of flaring. If there are no signs and all Eosinophils are still low on pathology reports, then we continue to the next food or two and repeat the process. I asked Dr. Konikoff for more options... 
• Annabelle has been sedated and anesthetized so many times in only the last 2-3 months, I cannot imagine putting her back under just for potatoes. He asked what I wanted to do and I feel two completely different ways about this. 1) Eosinophilic Esophagitis is extremely serious and absolutely should be handled with an incredible amount of caution to not cause further damage to her tiny body, more than it already is from EoE. Allowing Annabelle to have many foods at one time has the potential to set her immune system into over drive, destroying her GI System and truly making Annabelle terribly ill. With that in mind, I want to take major baby steps to introducing foods again. 2) On the other hand. I want Annabelle to be able to laugh, play, eat food and enjoy anything and every single thing her little heart desires. From an extremely irrational stand-point, I want to be able to give her every food she is not allergic to, despite EoE. However that definitely is not keeping her safety and health in mind. Dr. Konikoff and I compromised. We will take the Food Trial process extremely slow and reintroduce foods every SEVERAL weeks as long as I am not seeing any signs at all of a flare or replapse. We will continue on this path until we decide we want to take a pause and scope. If/when Annabelle has any procedures at King’s Daughter’s where she is requiring anesthesia, Dr. Konikoff will coordinate that with the leading team for whatever procedure it may be, and he will go in also and scope at that time – to avoid an additional need for sedation. I love this plan. I love that nothing is set in stone, that I get to lead when we will scope next.. but most of all – I love the giddiness I feel that we just may be able to give Annabelle food again soon! No matter what, I really believe she will be able to eat soon. I cannot wait. My heart pours and beats so hard just thinking about that moment. It’s going to be so big :)
• We also discussed the fall and winter seasons from his perspective as well vs. the Pulmonologist concerns. I absolutely love the proactive approach these doctors take.. they are always thinking two steps ahead. These conversations prevent me from scrambling when the time comes to figure out x,y,z.. they have already answered my questions before they are even needed and given me the direction on what I need to do if/when I am faced with these scenarios. Dr. Konikoff is wonderful, I am so grateful to have him part of Annabelle’s team of Specialists.    

Finally it was time to head home! I would be lying if I said I wasn’t completely exhausted. Annabelle gave Valet our ticket for our car and we waiting patiently in the incredible July heat of Norfolk. Belle made a sweet little friend that was sporting the cutest backpack. She has a g-tube and the backpack fit on her tiny body so perfectly, it was nice to see in person and so heartwarming to see the smile across the little girls face. Both girls were wearing the same hot pink tutu and they loved shaking it for one another! Oh to be a toddler and have no fears or worries in the world, their only priority is finding each opportunity in life to laugh and smile.

The drive home was equally exhausting. Norfolk traffic stinks. Tunnel traffic stinks. Driving 460 in the pouring down rain is exhausting enough that I needed a drink when I got home. Belle did good on the way home. Just like she did when we got in the car to head towards CHKD, she started crying and screaming 30min or so on the road and then had a seizure. This time I watched what happened.. it kicked her butt but she didn’t fall asleep immediately, she wore a blank stare on her face for several minutes until she finally went to sleep. 

Annabelle woke up 20 minutes before we got home.. she was so sad and frustrated to still be in the car. I tried singing, talking, tickling, dancing, I offered Lambie and Gigi (blanket) but nothing worked.. finally I asked, ‘Do you want to see sissy?’, her little eyes opened to the size of quarters! She started jumping in her carseat repeating “Sisshy! Sisshy!” We pulled into the driveway and I don’t know who was more excited to see Madelynne; myself or Annabelle. We played outside for a quick bit and then went in to soak up the AC. I was so hot and irritated / exhausted from the day that I jumped in the shower and found my best comfy sweatpants and tshirt I could find before joining the girls in the playroom.

Annabelle’s night was up and down.. she didn’t have any more spells, and her walking seems to be improving a lot. The patches on her back haven’t seemed to bother her or grab her attention at all. She cannot have a bath until Friday night.. say it with me, ‘gross!’ but sponge baths seem to be doing the trick just fine. I found jammies that wouldn’t move around too much on her back or allow her to pull at anything and soon both girls were in bed. They both wanted a story each. . . and then wanted to read both stories twice, but how do you say no to beautiful little girls dark eyes and adorably grinning faces sitting in your lap looking up to you ‘Pweeeeeasee?!’ – ah, of COURSE I’ll read it again! . . and again and again. This entire ordeal is really turning me into a complete softy – some call it perspective and priorities, I am calling it ‘mom has put down her guns and turned into a complete softy’. Those sweet girls deserve every bit of it though. Life as they know it has been turned completely upside down for everything they have ever understood. This is not only Annabelle’s fight, it’s everyone in our home that is trying to take this journey one day at a time.. including the darn dog.

Today wasn’t a bad day. It wasn’t fantastic in the grand scheme of things, but it was productive and positive for Annabelle. No pain today. No needles. No bad news. She smiled a lot today, she walked today, she giggled and talked to us a bit. Best of all, she woke me up with a smile across her face and I put her to bed by tickling her tummy and seeing a smile that could melt even the coldest of hearts. Soon, doctors will help her, very soon – I can feel it.