Days 10, 11 & 12

Not much to report, other than Addie's ANC (Absolute Neutrophil Count) went up to 20 yesterday (Day 11) which was really nice to see - its been holding steady at 0.  We finally got her to take a shower tonight - she has been terribly afraid and unwilling to do so.  I'm not sure what scared her about it, she takes them at home and even prefers them over baths.  I just think she isn't use to the shower here and given all that she has been through she just isn't comfortable.  It was a bit of a challenge because they instructed us to do our best to keep her dressing dry (they covered it with plastic and tape), so that was a bit of a challenge.

Taking her steroids orally is getting better.  Thank you for all of your suggestions, I can assure you that we will be trying every.single.one, LOL.  We tried it in Applesauce last night and so far that seems like its been the best for her.  She was excited that she could barely taste it.  Next up - Strawberry Jam, Whipped Cream, Cool Whip and hopefully I can get her to be a fan of chocolate pudding.  Once we are home I'm definitely going to try and dilute it as so many of you have suggested.  It seems Grape is the best flavor to mask the nasty powdery, pill taste.  Really excited to try White Grape Juice, or hell even Grape soda.....whatever it takes for her to get the medication down and doing its job.

I had a little talk with Addie about "The Beast" in side of her.  We really haven't addressed what she has or called it by its official horrible name, but we haven't shielded any of our conversations with the nurses or doctors either.  She is too young to understand what Leukemia is, so she just thinks she is in the hospital because she is sick and they have her here to make her better.  I explained to her that the scary Beast (from Beauty and the Beast) is inside her making her sick, and we need to take her medicine to kill him.  That was the best analogy I could come up with, but she totally understands, so mission accomplished!  I'm hoping spinning in this way will help when she pushes us back about taking her medicine.  Once the Beast is dead, just like Belle gets her Prince in the end, Addie will get to be healthy again!

Day 12 - (8/29) - Addie's ANC dropped back down to 4 today which is quite a bummer, since it starts us all over again in the countdown to go home.  After speaking with the doctors, while they expect it to fluctuate up and down, they need to see her ANC at at least 200 due to the infection, and they also need her ANC trending upwards for 2 consecutive days before we are cleared to leave.  Her doctor said he is still hopeful that she can be discharged on Friday after she receives her weekly dose of Chemo.  Prayers to bring up her ANC would be greatly appreciated!  For some good news, we received the results of her MRD (blood) test that was done last week during her Spinal Tap.   It showed that she only has 0.06% of Leukemia cells left in her bone marrow.  The goal is obviously to be 0 (which they will check for certain on Day 29), but her doctors were very happy with this number and have high hopes that we will see them all gone by then.  At least we know the medicine is doing its job! God is good!

In other news, Louie started 8th grade on Monday (cue the tears) and I don't know if its just that we haven't gotten to see him all that much lately, or just knowing that he is in his last year of Middle School, but he just seems so big and grown up to Dan and I 😩.  Bentley is doing great, and somehow I've been pumping more milk than I ever have before, which is at least one positive to when I can't be with him.  Daddy already has him ready for Football season!

With Love,

Day 9

(8/26) - Today was pretty uneventful - and I am happy about that! A lot of family came to visit, Addie did a lot of coloring and had an awesome appetite again!  Her levels are still low (which is to be expected) and her fevers are staying away.  The only stress we endured was trying to get her to take her steroids orally.  She was receiving them through her IV, but being that we are going to have to administer them at home twice a day (until Day 28), her doctors wanted us to start getting her use to taking them herself.  Addie has never been great at taking medicine - Grape Tylenol is about the only thing she will take and even that is a challenge sometimes.  The steroids themselves are teeny tiny (she needs to take 2 for each dose).  She has never had to swallow pills, so we are practicing with Mini M&Ms and Nerds.  I hope she learns how because the alternative is liquid (which the docs actually said tastes horrible) or crushing her pills into something.  This is what we have been doing, but she is not an idiot and still complains of the taste and fights us to take it.  I welcome any suggestions on teaching a child to swallow a pill or something we can crush it in to mask the taste.  So far we've tried a smoothie and a slushee.  She doesn't like applesauce or pudding =(.

Today was the first day I started to feel all the going back and forth between Addie and Bentley catch up with me. I feel like I've hit a wall and I am just so mentally drained.  The guilt I have when I'm with Addie over not being with or being able to nurse my 6 week old.  And then the guilt I feel when I am with Bentley that I am not at Addie's side 24/7.  The constant guilt I feel that Louie isn't here, or that Dan and I aren't getting to spend very much time alone either...its all just a lot to handle.  Dan and I make a great team and like I have said, I am just so grateful to have him through everything.  He takes care of so much for all of us without me even asking and I'm secretly jealous of how much times he's getting to bond with Bentley.  I just miss the crap out of him and I can't wait for us all to get home.

With Love,

Day 7 & 8

Day 7 (8/24) - Today was amazing! Addie had an excellent day and the antibiotics finally started kicking in.  Her blood culture came back showing she did in fact have a bacterial infection called Streptococcus Pneumonia.  This is very common - something we all have, except her body doesn't have the means to fight it as a healthy person's would.  Its the same bacteria that causes Strep Throat, Ear Infections and Pneumonia.  Its great that they started the medication yesterday just in case, because that is what they would have given her when they saw this.  Therefore the medication had a chance to start working and today her culture was negative showing no more bacteria in her blood.  The best part for me was to see her up and about, happy and herself.  No more fevers and no more complaints about her throat hurting her!  Her appetite came back too which I was so relieved about!  Dan even brought Bentley to see his big sis since she was in such good spirits, and we knew how happy it would make her to see him. Oh - and Uncle Eric surprised all of us at night, which was a much needed surprise!  We thought he was coming in on Friday!


Day 8 (8/25) - Everyone warned us that this would be a big day for Addie so I woke up with my stomach in knots.  Spoiler Alert - despite them doing a Spinal Tap we had another great day!  Her blood cultures came back negative again (great sign!), but Addie will still need to be antibiotics for 14 days due to the infection.  The good news is that we can administer them at home, so its not something we would need to stay in the hospital for, although her infection did push back our "check-out" date.  Thankfully Addie isn't ready to leave yet.  When I asked her if she wanted to go home, she said "No, I want to stay".  After all she has been through, its amazing to me that she wouldn't want to get the F out of here!   The only part that stunk about today was that she wasn't allowed to eat since midnight the night before and her procedure wasn't until 1:30pm.  Addie was starving and became very "hangry".  All she wanted was Baby Corn (so random!!) and she literally was crying "I WANT BABY CORN NOW"....you have to find the humor these days!  Uncle Jamie and Uncle Eric promised to go get her baby corn to have as soon as she woke up from her procedure - so off they went on a mission! She was pretty upset going into her procedure because she was so hungry but once they gave her some of the medicine to sedate her she calmed down.  The medication they gave her makes her eyes kind of flutter, not completely close - which was so weird to see.  Although we were allowed to be in there with her for the procedure, her Dad and I stepped out.  It is unimaginably hard seeing your baby like that, nor did I want to watch them stick a needle in her back.  Thankfully Dan was OK staying in with her.  It was comforting to us for him to be there for both Addie when she woke up, and also to just know what was going on.  The procedure went well, the fluid was clear and the lab later confirmed that there is no leukemia cells in her Spinal Fluid (Yay!).  They also gave her chemo intrathecally during the procedure, and they drew some blood which they can check as an indicator of how the bone marrow is reacting to the medications.  We won't know those results for another week, and we won't officially know what the bone marrow shows until Day 29.  She woke up totally silly and asking when she could eat her baby corn, LOL.  They told us to have her start slow with drinking and then eating but Addie tore into her chicken nuggets and baby corn as soon as she was back in her room...I couldn't believe my eyes, haha.  I can't reiterate how nice it is to see my girl eat and have such an appetite (thank you steroids), as this is not usually the case - even before all of this.  She also got another dose of Chemo through her IV which she handled well.  The rest of the day Addie had a room full of family and more toys to open, another visit from both of her brothers and a whole lot of smiles!  Nick and I sometimes swap throughout the day being with Addie, so that we each can run home if we have to to take care of things, I can nurse Bentley, or just go get some air.  Dan and I went out for a nice dinner and got to sit outside (hello Fall weather, so nice to see you peaking in!).  It was really nice to just feel normal for a little and do normal things we are so use to doing.  Please continue to send your prayers and love and I will continue to say Thank You, thank you, THANK YOU!

With Love,

Day 6

8/23 - Addie's temperature was up and down throughout the night, never exceeding 100.8, but to lean on the side of caution the doctor decided to give her a broad spectrum antibiotic to kill anything if it is in fact a bacterial infection.  They also took blood cultures to ensure the infection is not in her bloodstream.  If it is not an infection and just a virus, like any other virus, it has to run its course. This could be our explanation as to why she has been so out of it and sleeping / not eating the past couple days.  In other GREAT news, part of her bone marrow biopsy came back showing the doctors exactly what her genetic mutation cells are made up of.  I am happy to report that those specific cells are cells in which they know exactly what their makeup is and how to treat them.  The doctor shared that this now puts her at a low risk and also attributes even more to a wonderful and curable prognosis for her! God is so good!

Some of you have expressed concern and are curious about how I am doing and coping with all of this and a newborn, too.  I am trying to take each day a step at a time and process the information a little bit at a time.  Its hard, but I am trying to not get too ahead of myself with questions and things to worry about.  It has helped tremendously to constantly be surrounded by our loved ones, and when they go home at night to turn to my social media and receive hundreds and hundreds of warm and uplifting messages.  I never feel alone and its all making this a tiny bit easier on me.  Its true what they say and does take an army and we are incredibly blessed and grateful to have the people in our lives that we do.  Without them, I would not be able to be at my little girl's bedside as much as I am.  Dan's boss has been amazing to us and basically told him to not even worry about work at the moment. The nice thing is, is that he works in this hospital. Therefore he has still been able to take some calls and have meetings against his bosses instructions.  I'm glad he at least gets to feel a little normal and get his mind out of this hospital room for a little, too.  We keep saying how crazy it is that things work out the way that they do and how ironic that he can still be here with Addie and at work at the same time.

There is a family stay / small hotel across from the hospital for families who need to stay long term. We have been keeping Bentley there pretty much the entire time and between Dany, my Mom, and our family and friends, he is being well taken care of and smothered in love.  Its nice for me to have him so close, because I pop over there once or twice a day to nurse him and spend a little time with him, too. The hospital also gave me a pump, so when I am not with him I am pumping. The last thing I want is for my supply to go down so I have been doing everything I can to keep it up and not let the stress effect it either.  **Shoutout and admiration to exclusively pumping Mommys or those who work full-time...being attached to a breast-pump, washing and sterilizing parts and bottles - rinse and repeat is a little job of its own!  Louie is staying with Dan's parents while we are at the hospital and I can't express more the relief that we have that our other children are being so well taken care of. Louie is up to visit Addie a lot and he always puts a smile on her face or is able to get her to talk on the phone when she won't talk to anyone else.  I love how much she loves her big brother. With Bentley, we keep saying that God couldn't give us a better baby to be in this situation. Its like he knows what is going on and is being incredible for us.  He just eats and sleeps and is quiet most of the day.  Unfortunately there are just too many germs in the hospital for him to catch, so we really haven't had him up to visit with Addie. She misses her brothers and asks about them constantly, which is always a kick to the stomach.  We can't wait until we are all back home and under one roof again, soon.

Dan has been my ROCK and I do not know how I could possibly be enduring all that I am without him AND his family by my side.  I tell him everyday how grateful I am and thanked his Mom for giving me such an incredible man.  And if he weren't wonderful and enough of a support, I feel so lucky to be a part of his family.  They have always treated Addie like their own, but more than ever, every single one of them has stepped up to offer their help, share their worry, and wrap their arms around us and her.  Dan's 2 cousins and their families (4 of Addie's favorite cousins) drove up from NY over the weekend and basically spent the entire day in the waiting room because Addie was having such a rough day. They refused to leave even though we told them she wasn't up for visitors and had lunch and dinner in the waiting room waiting out for when she would be feeling better (which she did!). One of his cousins is fighting his own battle with Stage 4 Esophageal cancer and actually had his surgery scheduled 2 days after their visit to Addie (which was a success, btw!).  We insisted that he should stay home but he insisted that he wanted to come be with Addie.  I am in tears even just writing about how wonderful and selfless they all have been.  It goes without saying how incredible my family has been too.  Between my Mom helping out with Bentley and being at Addie's bedside whenever she can, cooking us meals and bringing them to the hospital and my Dad leaving work early from NYC everyday to be by his favorite girl's side with whatever she asks for.  We keep joking how we hope Addie doesn't ask Papou for a Unicorn because he will probably go find one! My older brother spent the entire last weekend with us - again even though she wasn't up for visitors and he is coming back up this weekend.  And my little brother is flying up from NC this weekend to be here for her Spinal Tap on Friday and then coming back again next week . How did we ever get so lucky?

You all will get tired of hearing me say it, but I am going to keep telling you all how grateful we are for your prayers and positivity.  God is answering our prayers and we have all of you in his ear to thank for it.  I wish I could personally respond and thank each and every single message we receive - it touches my heart more than you know.  I cannot wait to be able to share with Addie how many prayer warriors she had fighting for her and how loved she is around the world, from complete strangers.  I will never be able to express how humbled I am by all of you.

With Love,

Days 4 & 5

*I just need to take a moment to say thank you to everyone who has reached out to lend strength, support and prayers as well as offers to connect us to those who have walked this path before.  We are totally overwhelmed (in a good way!) and just trying to sort through all the information given to us by the doctors/ nurses as well as the foundations, families and support systems.  It is so beyond comforting to know we are not alone in this fight and have so many resources and people who are able to help us know what to expect.  As I said, I don't know it yet, but I know that God chose Addie specifically for this fight and I trust that we will all one day know exactly why, and be grateful for all of this - even the bad and scary stuff.

8/21 - Today has been Addie's best one yet!  She did have a dose of Chemo through her IV and handled it flawlessly and showed no side effects.  She seemed "herself" all day today and it was so nice to see. She did complain that her throat was hurting periodically throughout the day and the doctor said it could be either a side effect of the steroids she is on (they can cause mouth sores) or possibly a small infection given the fact that she essentially has no immune system at the moment. They gave her Tylenol and that seemed to help.  She didn't want to be in bed much either with the exception of when she took a 2 hour nap in the late afternoon.  It was so nice to see her resting without any pain.  At night she became a ravenous little beast!  She requested chicken fingers for dinner and finished all of them (if you know Addie, you know its rare for her to ever finish her meal, lol).  She then requested cucumbers with salt, more chicken fingers and finished off her cravings with a bagel!  It was a relief to see her with such an appetite since that hasn't been the case since we got here.



8/22 - Today was a hard day on Addie - we aren't sure if it is because of the Chemo yesterday or the fact that her WBC (white blood cells) are almost at 0 giving her body the inability to fight infection. She basically slept the whole day and barely ate or drank anything - quite the opposite from the night before. She was up for a short time and painted a picture that we hung on her wall.  In the evening she started complaining that her head hurt so we checked her temperature and it was at 100.3 - the highest its been since we got to the hospital.  I of course panicked but the nurses assured me that fevers are to be expected and they have protocols in place on how to handle them.  The good news is that my strong little girl was able to fight it off on her own without medication and within 2 hours her temperature went back down to 98.7.  At around 9:00pm Dan ran out to get Starbucks and Addie requested a S'mores frappuccino (happy to see she still loves these!).  He came back and she told us that they made it wrong. LOL.  She explained how it was supposed to have graham crackers on the top and chocolate on the bottom (this one looked like it was all chocolate). So then she said, "I think I'll try a Strawberry one instead".  I told her they were probably closed now, but Dan of course flew back out and drove back to Starbucks to get our girl what she wanted.  I didn't think she would end up drinking it - she was asking for things all day, would take a bite and not want it anymore), but to my surprise she drank about half and I had a little sigh of relief.  Not the healthiest option, but it was great to see her actually eat something today.  Hoping for a better day tomorrow.

My Sleeping Beauty

If there is one thing we have come to learn, between the steroids, pain and her emotion of being in the hospital, things can change on a dime for her and her mood.  She could be whining one second and complaining about something hurting her, not even wanting to speak a word- and then burst out something off the wall hysterical!  I miss her sassy little personality and when we see glimmers of it, I hold on so tight to those moments.  I can't wait for her to be "out of the woods" here in the hospital and somewhat back to herself-at least for more than a few moments.

With Love,

Lives Forever Changed

Lets start from the beginning.  On Wednesday, August 15th I brought Bentley in for his 1 month well-check (he is doing great, btw - 11lbs 14oz and thriving!) While we were there I asked the doctor to check Addie out because she had looked a little yellow / pale to us the past couple of days. Furthermore, she seemed tired and a little weak (I just chalked it up to her skipping her naps (she still naps each day for 2.5 hours!) the last few days because we have been soaking up the last month of Summer)).  I guess the most concerning thing was that she had fallen 2 nights prior and told me her legs felt shakey.  Again, chalked it up to my clumsy girl who like most 4 year olds trips and falls quite often. Her doctor agreed that she looked a little pale but assured me not to worry, that it was probably just a virus or maybe her iron was low. He sent us for blood work and told me he would call me that night with the results.  I never got a call so felt relieved that it was obviously nothing, or he would have called.  The next morning started off like every other Summer morning.  We stayed in bed watching cartoons, I nursed Bentley and then we headed downstairs to have breakfast.  As I was preparing her breakfast she fell again and told me it was because her legs were shaking.  I knew right then and there that something was not right.  I called the doctor's, asked for the results from the blood work and the nurse said the doctor would call back since there was nothing in her chart (don't get me started on the lack of communication with her doctor's office).  They immediately called back and said that Addie's hemoglobin was very low and I needed to take her to the ER right away.  That was the exact moment-the line in the sand that separated my once very normal, carefree and fun family life to challenging, terrifying and completely unknown.  I rushed to get the kids dressed, put them in the car, called her Dad and we sped to the hospital.  They immediately checked us in and took us back, took all her vitals (which were all normal and totally fine).  They then wanted to do more bloodwork (They told us it could totally change just from the prior day).  Honestly, having them try and find a good vein as been the most painful thing (as her Mom) to watch yet.  They stuck my baby twice before using an ultrasound to find her vein and got it on the 3rd try.  It was traumatizing to say the least, for both Addie and us.  The ER doctor came in to talk to us and find out what was going on shortly after, and though she wasn't volunteering the scary info, I started asking the scary questions.  I dreaded the worst, and knew in the back of my mind the possibility of it being what it was...but kept praying it was just that she was Anemic.  The doctor explained that if she was anemic her blood work wouldn't have presented as it did and that it was definitely not the case.  I then asked what else it could possibly be if it wasn't that (again, I knew the answer, I just wanted to hear if she would actually say the word - and she did).  She hesitantly and quietly explained that the most obvious would be Cancer (the pain to even type that disgusting word is unbearable) but whatever it was, we should plan to be here for a little while as she would need some kind of treatment.    Time stood still in that moment - like a bad dream I wanted to wake up so bad from.  How quickly things changed for us that morning, I still can't wrap my head around it.  Not long after the ER doctor was with us one of the Pediatric Hematologists came in and explained that she did a blood smear and from what she could see, it did in fact look like Leukemia, but that should would need to run further tests to confirm the exact type.  You always hear about families who have little ones battling this horrible disease, you see the gut-wrenching commercials for St. Jude on your TV, Fundraising posts on Facebook, etc. You NEVER think you will soon be a part of that world.  You never think it can happen to your child.  As I sit here and type this 5 days later, I still cannot believe its Addie, my little girl - a new and proud big sister, my sweet girl full of sass, who loves life, loves her family even more and who is so full of life and happy each and every day.

Tests confirmed that Addison did in fact have Acute Lymphoblastic Leukemia (ALL), which is the most common type of childhood cancer.  The good news (seriously?!) is that it is extremely treatable, heavily researched and has amazing outcomes.  She told us that we can expect this journey to be a total of 2 years and 3 months, but the treatment will space out depending on how Addie is doing and responding to the medication.  She could technically go into remission in a few weeks.  The doctor is going to give us her treatment plan on a month to month basis.  From the minute our doctor confirmed her diagnosis she assured us that IF Addie were to get sick with this disease - THIS is the one we would want for her to have.  She has yet to answer one single question with any bit of hesitation or doubt.  She has been extremely confident from Day 1 about what we can expect, how treatment would go and when she would be rid of this horrible disease.  We are extremely confident and grateful for the team of doctors and nurses we have helping Addie fight this battle.  The way they made it sound to us is that it is a very black and white disease.  Sadly enough (but also extremely comforting) we all know several people whose children have been diagnosed with ALL and they have all kicked its ass!  Its comforting to have other parents be able to tell us exactly what to expect during this journey.

8-18-17 Addie had a successful surgery 2 days after we got the diagnosis.  They placed a central line (port) which she now receives all of her infusions and medications through.  They also did a spinal tap and bone marrow biopsy.  She came out of anesthesia and was back to herself within the hour.  I would have been out of it the rest of the day, but Addie acted as if that day was no different - this little girl continues to amaze me and I am just so proud to be her Mommy.  The spinal tap showed no leukemia cells in her spinal fluid, which was a huge sigh of relief.  She received one dose of Chemo intrathecally and her 2 doses of steroids.  They did give her Zofran (anti-nausea meds) and she handled everything like a champ, showing no side effects.


8-19-17 Today was a rough one.  We went from having a fun and happy day full of visitors and lots of presents for our girl, to it all going downhill after Addie had several meltdowns complaining that her legs and head hurt.  She has never been one to complain, so to see her in pain and crying about how bad her head hurt was excruciating - to say the least.  They gave her some pain medicine to ease the pain and she was in and out of sleep after she calmed down.  Then it all changed again and she was back to her happy, cheerful self, as if the last 5 hours of hysterical crying and distress never happened.  The doctors said it could have been a number of things - post spinal headache, the emotion of everything setting in, the constant rounds of visitors with literally no downtime to rest other than sleep, or the steroids (one of the side effects is mood swings). The doctor explained that the pain in her legs was most likely caused by the leukemia - as the cancer is in her bones.  Today was the first glimpse of what we can expect as far as how quickly things can take a turn.  I imagine it will get easier for us as her parents to see, but the pain to see her be in pain is something I will never get use to.

We will most likely be in the hospital for the next 2 weeks (possibly less) but it all depends on what the medication is doing and how her blood counts are looking.  They need to continue to monitor her vitals and make sure she isn't spiking any fevers.  After the 2 weeks of inpatient treatment we can go home, continue the steroids and come back to their outpatient clinic once a week for her chemo.  Day 8 (8/25) is going to be a big day for us.  Day 8 they will be able to tell us what the medication is doing if anything after another spinal tap and bone marrow biopsy as well as another dose of chemo intrathecally.  Day 29 (9/15) is the other big day, as this is the day they will be able to determine her risk (right now she is Standard).  Again she will have a spinal, biopsy and dose of chemo intrathecally.  Those are the 2 key days for us at the moment, and we will continue to hope and pray for good news and outcomes.  Addison loves being in the hospital (thank God) and literally told us yesterday that she never wants to leave.  We are hoping she still feels like that in the next week or so. Her room is constantly filled with her favorite people, the staff is incredible with her (she has her first boyfriend at 4 years old named Mike....he is her nightshift nurse and wow does our girl have quite the crush!), and her room looks worse than our living room on Christmas morning....so I guess I can't blame a girl for loving it here!

This blog has been very un-loved for a long time, but I am wiping the dust off as it is going to be very useful to us for quite some time to come.  I plan to blog / journal our entire journey for several reasons.  Number 1 being that I want to have a central place for our family and friends to receive updates on Addison.  We have all been inundated with texts and calls from our loved ones asking for updates and wanting to know how we are all doing.  Not that we don't 1000% appreciate how much support and love from everyone, but we could literally be on our phones all day updating / texting / calling if we wanted to, but we just want to be by our girl's side helping her fight and also trying to keep her world as normal feeling as possible.  I also want to have this for Addison to look back on and read one day.  Being that she is 4 years old, I'm not sure what she will and won't remember.  This is going to be a huge (if not the hugest) thing in her life to go through and I want her to be able to look back on her journey. And finally, I am hoping it works as some kind of therapy for me - an outlook or escape from our scary unknown day to day.  I know my blog reaches a lot of people and I'm hoping it provides some comfort to anyone else going through this battle, or vice verse...provides support to our family from anyone who has gone through this who cares to share their experience.   My goal is to post very frequently...whether that is a short post at the end of the night recapping our day, or each week - I want to remember all the details and record them.  Some of you are probably thinking that its odd that I would want to remember everything and not just push through each day to get it over with...but as I've always said and believed...God makes no mistakes.  There is a reason for everything and there is a reason he chose Addie and our family to go through this.  He never gives us more than we can handle and I am confident that our little girl is going to be just fine.  Its a part of her now and has changed our entire world.  We have to go through this and we have to feel everything.  It only makes the happy days feel that much better.

As far as how I am holding up - I think I can speak for her dad and I both that it comes in waves.  We can be laughing and smiling with her one second and then completely break down the next, with the reality of being in a hospital bed rather than being at the pool or at home playing outside with friends.  I expect there to be ups and downs, as I expect our emotions to go up and down throughout this journey, too. We are all just trying to take one day at a time, process the information as best we can and stay as strong as we can for our girl.  I will be forever grateful for all of the outpouring of love, prayers and support from our families, friends, co-workers, neighbors and even complete strangers who have reached out to share their stories with us.  We are being held up by it all and consistently feel everyone's arms wrapped around us.  Everyone has offered to be here for us at the drop of a hat and I just hope that one day we will be able to repay all of the favors.

Thank you for reading and I hope this new journey provides support if you need it, support for all of us and comfort to anyone else going through a similar journey - to just know that you are not alone and we are all in this together.  If there has been one glimmer of light through all of the darkness, it is each story we hear, conversations we have had with nurses or phone numbers given to us of other Mom's wanting us to call so they can share their stories with us...if you are someone who has any experience with this and feels comfortable, please reach out.  Advice, positive stories, things you wish you knew, things the doctors don't warn you about, etc.  We welcome it all!  Its comforting each and every time we speak to someone familiar with this and I know it will never get old hearing from those who have walked this path before.  If you are someone who prays, I ask that you please send them our way.  We could use all the prayers, positive thoughts and hope you have to share.

 With Love,