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Wednesday, October 18, 2017

My Bald Beauty!

A week ago I witnessed by 4 year old turn into a Young Adult right before my eyes.  Lets back-up....When Addie first started losing her hair, I cut it to about a bob length to make it more manageable and less tangly.  She didn't want me to cut it (she never had a haircut before), but I explained to her how the medicine they give to her to kill the beast, also makes her hair fall out.  We started having daily conversations about her hair and the staff at the clinic also helped with the conversations too.  She is still pretty young to have something like hair affect her, but she has never had a hair cut and always loved her long hair, so I was prepared that while most kids aren't phased by hair, I knew Addie would be.  She was really upset at first, but understood.  I also explained how when it does grow back, it may be even different than it use to be!  We keep saying how exciting it will be to see if her hair grows back the same or totally different - she wants it to grow back pink, lol.  Once it was shorter, I was brushing it once a day to avoid it from tangling and getting matted...but we had been keeping it up and out of the way for the most part.  She didn't like seeing how much came out in her Tubby or her hair brush.  If I'm being honest, I was looking forward to the day when we could shave it because it was just getting everywhere and making her upset to see.  I asked her early on if she just wanted to shave it off completely but she didn't want any part of it and I wasn't pushing.  We asked her if she wanted to wear a wig that looked just like her normal hair and she was really excited about it!  We discovered an incredible organization called Children with Hair Loss who gifts kids a real-human hair wig every year until they turn 21.  The wig was gorgeous, but looked very "adult", so I had my sweet friend who is a hair stylist come over and make it more like Addie's original hair.  It was hard for her to put the wig on with the hair she still had left and her little top knot, so as much as she loved it, she wasn't crazy about wearing it - which was totally fine with me.  I started planting seeds again, about shaving the rest of her hair off but it wasn't well received.  The clinic gifted her the Ella barbie who is bald and comes with 2 wigs.  They also let Addie play with their bald American Girl Doll each time we were there, and sent us home with books to help her come around to the idea.  Last Tuesday night I was brushing her hair before bed and Addie caught a glimpse of herself in her mirrored dresser.  She broke down and was very upset seeing her scalp in some areas.  I kept it together for her and told her how it wasn't a big deal at all, wouldn't be for too long and it will grow back.  Most importantly I reassured her that she will be just as beautiful whether she has hair or not.  I was secretly dying inside watching her be so effected by it.  I said, "Addie, lets just shave it off and get it over with, it will be easier for you to wear your wig if you want, too".  I also had been buying her really cute hats and headbands that I showed her as well.  Louie came in when he heard her crying and as always Addie's face lit up.  He was encouraging her to just do it, and Addie would do anything Louie tells her to do.  So she said, "I want Louie to shave my head?" We ran with it!  We let her use her own scissors to trim off some more of her hair and make it fun, before Louie (Dan) started shaving off the remaining strands on her beautiful head.  Call it a family affair, but it was a moment that I will never forget and one that brought all of us so much closer.  She jumped in the shower afterwards to get off all the small itchy hairs and said it felt funny and started laughing!  It was all smiles from there and honestly I breathed a huge sigh of relief.  We then Face Timed everyone to show off Addie's new do' and everyone's excitement and reaction definitely helped to make it much less of a "no big deal".  Her wig slipped on super easy after that, though Addie didn't have much interest in wearing it.  She said she just wanted to wear it for the wedding.  We told her she didn't have to if she didn't want to but she was excited about it, so again we went with it.  I doubt the wig will ever go back on her head and I would actually prefer it that way if I am being honest.  The wig is beautiful, but its obvious that its a wig and she just looks so much more herself without it.  She looks adorable and she is comfortable and thats all I could ever want.  After the ceremony, we encouraged her to take the wig off and just have fun and dance without having it itching her or being too hot.  This day was one I was dreading ever since we got her diagnosis, but it honestly went so much better than I could have imagined.  She is happy and comfortable, which is all I could ever ask for. 

Here are a few photos from the wedding - though they aren't the best quality...I didn't have my phone on me at all during the wedding, so they are photos sent by friends/family.  I can't wait to share more once I get them from our Photographer!
I plan on booking an appointment as soon as I have a second, to chop off my hair and donate it to Children with Hair Loss to be made into a wig for another little girl who has a beast living inside her.  Addie wants to come with me and cut my hair the same way she cut hers, so it will be a fun day ahead!

Truthfully, I wish we had done it sooner, but regardless I'm just happy its over with.  The anxiety leading up to it was terrible!  It went so much better than I expected and I am grateful for all of the support, barbie dolls, books, etc. that helped Addie feel more comfortable with losing her hair.  We can't wait for the day that it grows back so we can see how different (if at all) it will look!

With Love,

Wednesday, October 11, 2017

Consolidation Phase + Update!

I didn't mean to leave you all hanging, I promise!  We have settled in so nicely at home and returned to our normal activities!  We've been having playdates and seeing our friends, started Physical Therapy (which she LOVES), enjoying her new swing set outside and still being the best big sister and helper to her baby brother!   I haven't had a chance to get on here and share an update, but its all for good reason, I promise!  A lot has happened since my last update, with the biggest thing being that just 3 hours after I posted about Addie's remission, we received a call from the vet that Jake had taken a turn for the worse (we brought him in earlier because he was just acting "off").  He ended up going in for Emergency Surgery after they thought he was internally bleeding and found he was loaded with masses all over his spleen and liver =(.  They euthanized him on the table and once again my heart broke into a million tiny little pieces.  Talk about extreme highs and low lows...all in the matter of hours.  Jake had hemangiosarcoma which is a vicious and fast-moving cancer.  His doctor didn't think he had it for more than a few weeks.  Him being sad, not wanting to eat his food unless we put cheese in it, and just not acting himself while we were in the hospital, we chalked up to him having a sense of what was going on with Addie.  He wasn't home for 3 weeks, was getting passed around from house to house and wasn't seeing myself, Dan, the kids or Nick very often.  Once we returned home, he was back to his happy, crazy self, eating, drinking and pooping....no vomiting- NOTHING.  The only thing that prompted a phone call into his vet earlier that day, was that he wouldn't get off the bottom step to go for his morning walk-Dan had to pick him up. So I immediately knew something was wrong.  Jake loved his walks and I know he looked forward to them each morning.  The vet had initially thought he had ingested a "foreign object" like a toy or a paper towel that was causing a blockage, which showed up on his chest X-ray.  Now we know it was actually a mass.  Several people have reached out sharing how in their culture they believe that animals take on the sickness of their loved ones, so it has brought me a little bit of peace and comfort thinking that maybe Jake took Addie's cancer on himself, so she didn't have to suffer.  Dogs have a sixth sense and I believe he waited for us to be home and settled to make sure we were all ok before he had to leave us.  It sounds crazy-I am well aware...but I do believe in things like this and I also believe that God had a reason for taking our boy at just 8 years young AND at this time when all of this is happening.  There is an incredible void in our home and there moments every day, where I still catch myself thinking subconsciously that I have to feed him, close the pantry door so he doesn't raid it, and take him for a walk, or run home to let him out....the normal thoughts that would always be in my head everyday.  If there is a Pet Medium I can find, I will.  I would love to connect with Jake.  I always joked that he was my first born and who made me a Mommy.   To most they would laugh, but to those who are "dog moms", they got it.  Dogs are the definition of unconditional love and I am beyond grateful for the 8 beautiful years I had with my little boy.  He was there first...before anyone else and he was at my side for every single twist and turn, up and down and dark time life threw my way.  I was never alone and he ALWAYS managed to give me comfort.  My heart is broken, and though time will heal it, there is a piece of it that died with Jake that day.  It all jsut happened so fast. Its good and its bad, I guess.  He didn't suffer at all and was never in pain up until the end, but it was so sudden and I wish we had more time.  I know dogs don't live forever and I knew this day would come, I just didn't think it would be coming anytime soon.  He had the soul of a puppy....so playful and happy all the time - literally the night before when I came home from my appointment he greeted me at the door, toy in mouth barking and banging his tail up against the wall.  I never took him for granted, EVER.  Kissed him goodnight every single night before I went to bed and hugged on him every morning when I got up.  He slept outside the kid's rooms at night and kept us all feeling safe by barking whenever there was someone on our property...even the UPS man, who is literally at our house everyday!   I am confident that we gave him a great life, filled with so much love and people who loved the hell out of him.   I'd like to think that Lucy was waiting for him at the Rainbow Bridge and they are both healed from any pain and are enjoying an new life together.  I know I will see him again one day and it will be the most joyful reunion EVER <3.

Switching Gears to Addison....so the Monday after we got the call that she was in remission, her doctor called again to say that her MRD (minimal residual disease) test results came back showing a residual of 0.04% leukemia cells. He was dumbfounded and I was shocked.  He explained that when he did the biopsy- 0 cells were detected and she is in fact still in remission.  In the 90s when the biopsys would show this, they would proceed with the normal treatment for a Standard Risk patient with ALL.  However, the leukemia would almost always come back.  They developed the MRD test to detect even the slightest trace of immature cells still lingering in her bone marrow, which would then determine the risk of it coming back and adjust treatment as needed.  It is a super, super sensitive test that looks at the nittiest of grittiest cells to detect any possible tiny bit of leukemia that could potentially cause a patient to relapse.  Because .04% was detected and not 0, they put her in the High Risk category.  What this means is that during the Consolidation Phase (what we are in now), her chemo is a little bit more intense than it would be if she was "Standard Risk".  The Consolidation phase is standard in all treatments for ALL, however they add a few more drugs and adjust the doses for higher risk patients.  The only difference in her entire treatment plan is THIS phase.  I had to give her 4 days of shots at home which she handled like a champ and also an oral Chemo at night.  If there is one thing that I am still amazed about it, it is that she has become so good at taking her medicine.  She takes it every time, without any problem or hesitation and I can't express enough how much easier it makes everything.  At the end of this phase (end of November) they will recheck her bone marrow again and we will go from there.  Hopefully it will be at 0 and we will resume her treatment. If it is still above 0 we will have to look at some alternate ways to kick this cancer's ass!

After we found out that her risk changed, we decided to go for a second opinion down at Children's Hospital of Philadelphia.  We met with a leukemia specialist who mainly sees and treats patients with ALL and has been for the last 16 years.  I have never doubted her current doctors at Lehigh Valley Children's.  They have been spot on with everything they have told us from Day 1 and we love all 3 of them very much.  If I'm being honest, I actually felt a little bad for wanting to go for a second opinion....but a Mom's gotta do what a Mom's gotta do!  Her 3 docs are General Pediatric Oncologists and I guess I just wanted to hear from the guy who knows this disease the best that we were crossing all of our Ts and dotting all of our Is for our girl.  It was a great meeting and went very well, he spent over an hour with us going over her case, answering our questions and reassuring us that if Addie was treated down at CHOP he would be doing the exact same thing as her docs up at Lehigh Valley.  This was a relief to all of us, though a surprise to none of us because as I've said, we really LOVE her docs and we have always felt like we were in wonderful hands.  It surely gave me some peace of mind which is exactly what I was hoping for!

So that is where we stand today!  Still receiving weekly spinal taps and chemo at the clinic and PT every Friday.  Outside of that, our days are always fun with a side of crazy while I still try to figure out how to juggle day to day life with a newborn and 2 other kiddos!  She is in wonderful spirits and if you didn't know about the Beast, you would never know anything was wrong or different with Addie.  Now that the steroids are done, her belly has gone down, her face has and is still continuing to de-puff.  Her legs and core have gotten stronger with the help of PT and she is finally able to do the stairs all by herself again!  She loves climbing up her ladder to her swing set and attempts the Rock Wall each time, too!  She still drives me crazy as every typical 4 year old does, is moody at times (or should I say a DIVA) and her and her friends still fight over wanting to dress-up as the same damn Princess at the same time!   But now more than ever I welcome the days where she drives me to my brink.  It means she is having a great day, feeling like herself, and not letting any of this effect her.  And quite frankly, I will take that over Cancer any day!  She is my hero and I still cannot believe how effortlessly she is enduring all that she is. Every good day for her is a freaking great day for me, and I look forward to more good days, her starting up Dance class and eventually re-joining her friends back at school.  Thank you for all of your continued prayers, love and support, it means more than you know!
xo,
Michele

Friday, September 15, 2017

Addie is in REMISSION!

Hi Everyone!  Its been a little before I have updated as we have been settling in at home and trying to find our new "way".  I updated on my Instagram (@Michelebell21) when we came home, so hopefully you can follow me there, as sometimes its easier and faster for me to post updates.  Addie is doing so great at home!  The only time she is upset or crabby is when she has to stop eating, LOL.  Seriously though - steroids are NO JOKE!  They have turned my picky eater into a ravenous little girl who just wants to eat all.day.long.  She wakes up in the middle of the night to go potty a lot (she is drinking a ton of water - which is awesome!) and always asks what we are having for dinner and tells me what she wants for breakfast and what she wants me to get at the store.  I'm always half asleep at 3am and laughing hysterically at our food conversations in the middle of the night!  Thankfully she took her last dose of steroids last night, but it will be a few days before they are out of her system. The doctors also warned me that coming off of them may cause her to be moody.  The steroids have also made her legs pretty weak and she is having trouble going up and down stairs, which is heart-breaking.  I think seeing her struggle with the steps has to be the hardest for me yet.  The steroids have also made her face all puffy and belly crazy big.  The doctors have assured us that this is all normal and will all go away and she will return to her normal self after the steroids are gone-thank God.  I know they are necessary for her treatment, but I hate them even more than chemo.  So far (knock on wood) she has been handling the chemo like a champ!  Her hair is starting to thin in places and come out in strands when we brush or wash it and I have been dreading this the most.  I tried having a little talk with her about it last night and the nurses even gave her a barbie named Ella who is bald and comes with different wigs.  I don't know if she has grasped it yet nor do I know if she will completely lose it or if it will just thin out and get patchy.  Her hair will grow back and if that is the worse thing that happens, I'll take it.  My fear as her Mom is just how she will be perceived or treated by her friends and other little ones who can't quite understand or are use to seeing their friend without any hair =(.  I just don't want it to effect Addie, though the nurses have assured us that most kids her age aren't usually phased by it.  Her hair is so long and she's never had it cut, so we are starting to talk about it more and even hinting at the possibility of cutting it a little shorter so it is a little easier to manage.  Thankfully she hasn't had any other side-effects from the chemo, so we are counting our blessings about that.  Day by day, one conversation at a time, one step at a time.  Thats how we will make it through.

Today is Day 29 - the BIG day that we have been waiting for since we were given her diagnosis.  She had her spinal tap and bone marrow biopsy yesterday and did so great!  They also gave her another Intrathecal dose of chemo.  Funny sidenote- I actually woke her up at 1:30am the night before to let her eat some pasta because she wasn't allowed to eat or drink past 2am.  Her procedure wasn't until 10:30am and needless to say my child was the definition of HANGRY all morning!  Her doctor called me tonight to share that - wait for it....ADDIE IS IN REMISSION!!  Her bone marrow came back showing 0 leukemia cells!!  We won't know the results of her MRD results until Monday or Tuesday when we will also be given her next 28 day treatment plan for the consolidation phase - based on her risk, determined by the MRD test.

Thank you for all of your prayers, I am so happy to share that they have been answered!  Please keep praying for my little girl and I will keep fighting this battle alongside her and keeping you all updated along the way!

With Love,

Tuesday, September 5, 2017

Day 19

Addie's ANC is up to 50 FINALLY!  This is the highest its been since it fell from 60 about a week ago.  She has 3 different oncologists on her case and her doctor today said he would feel most comfortable with keeping her here until we saw her ANC at 100.  Her doctor yesterday (I think) would have let us go home today since she had 2 consecutive days of it increasing.  Of course we all want to go home, however we don't want to go home to return back the next day, so I am ok with her doctor leaning on the side of caution.  Other then her ANC, all of her other {big} numbers are also going up! Her platelets doubled from yesterday which her doc said is a great sign that her bone marrow is producing new and healthy cells!  Her Monocytes are also in the double digits and holding steady which is another relief (they were at 0 up until 3 days ago).  The Monocytes are what create Neutrophils and the Neutrophils are what make up the ANC - along with the White Blood Cells.  I keep joking that I will be an Oncologist when this is all said and done, being that we are receiving a crash course everyday on blood and how cancer affects it!  I will never look at another CBC test the same again!

Other than that, not much to report (always a good thing).  I am itching for us to get home and return to some sort of normalcy.  I am excited to throw myself back into work - I truly miss it and connecting with everyone so much! As most know, Fall is my absolute FAVORITE time of the year and being that is is finally September, there is so much to look forward to!  The smells, the cozy sweaters, the boots - I want it all!  The amount of "retail therapy" that I have been doing is kind of insane.  Shame on you online shopping for being way too easy to do from a hospital room!  I can't wait for Addie and I to decorate when we get home as we do every year, and fill our home with leaves and Pumpkin Spice EVERYTHING!  I miss Jakers LIKE CRAZY and have only been able to see him twice over the last 3 weeks.  He is currently staying with Nick's parents and I am grateful to them for giving him a loving home and lots of attention while we are away.   I think I may try and film a little update video to my YT channel tomorrow when I am home for a little with Bentley - keep you posted on that.  I miss you guys so much!

As Dan and I have been saying from Day 2 (Day 1 we were still in shock/numb), things can be SO much worse for us.  We have heard such sad stories from some of the nurses here about other kiddos on her floor and their sad circumstances.  I just saw on the news about the beautiful 22 year old girl who was murdered on Temple University's campus (my alma mater).  And of course Hurricane Harvey and all that it has left behind (not to mention the fear of Irma hitting the US next).  To even be safe in a hospital that isn't being evacuated is a wonderful thing that we are not taking for granted.  It makes me so sad that others haven't been as fortunate.  All of these sad things happening to others and around the country / world really keep everything into perspective for us.  Addie's friends all started school today without her, and the constant photos on FB and IG of everyone's kids on their first day of school definitely puts a knot in my stomach.  I know that if I really stopped to dwell on it, I would end up on the floor and it would be hard to pick myself up.  But I am staying hopeful that she will be rejoining her friends at school before she knows it, and really won't remember ever missing out.  She needs to get healthy and that is what matters right now.  There will always more"first days of school" to come.

As hard as this time is on us and incredibly tough at times - things can always be worse.  So in a sort of weird way, we are grateful to at least be in the position we are in with this.  The fact that the this disease is so well researched and her doctors know exactly what they are doing and how to beat ALL.  We are so thankful that Addie is already responding so well to treatment and handling it all like the little Warrior Princess that she is (she still doesn't want to go home!).  In tough times we always have a choice.  We can let it defeat us and define us, or we can push through the mud and overcome, only to come out stronger than ever.  I'll always choose the 2nd option because the alternative doesn't help anyone (and really, who wants to be defined by cancer?!). I say this all with ease thanks to the incredible support we are constantly surrounded with.  I always say that in these tough times, you truly see who your friends are, and I could not be more proud of the friendships we have and the families that we come from.  It wouldn't be easy to stay so positive and continue pushing past the sadness without them - and of course all of you ;).  Thank you again, for all of your prayers, good vibes and love.  You will never know how much you all mean and how much it has helped.  I love that one day our girl will be able to look back at the "army" of people and prayers she had behind her helping her fight this fight.  I wish she could comprehend just how loved she truly is - even by people she has never even met.



With Gratitude <3

Saturday, September 2, 2017

Day 16 & Catch-Up!

We've been in a "holding pattern" here the last few days just waiting for her ANC to go up, so I apologize for the lack of updates! We played all morning on Thursday while she was out of bed and went from one activity to the next.  She was super energetic and happy and it was a nice change to see her acting "herself".  Normally she does one thing and then wants to get back in bed, so I had a feeling she was feeling better.  Sure enough we finally had our prayers answered yesterday morning when they told us that Addie's ANC came up to 60!  Its been at 0 the last several days, so it was a welcomed relief.   She had some special visitors one day, though she was having a "shy" moment, LOL.



She received her weekly dose of Chemotherapy on Friday and her doctor said it should not affect her ANC levels, but it unfortunately did drop to 40 today. Although it didn't go up, I am relieved it didn't fall all the way back to 0.  We are still hoping and praying to be discharged over this long weekend. COME ON ANC!  She has been doing great with taking her steroids crushed up in applesauce and thanks to them has had a pretty crazy appetite and is always craving things with salt. The downside to the steroids (in addition to her poor face becoming puffy) is her mood swings and overall attitude towards people, especially her parents & family.  That has been the most frustrating thing as her Mom- to see her go from extreme highs to extreme lows in a matter of seconds.  In those moments of her being so moody and bossy and blah, I miss my baby girl so much.  I know its just the medicine and I feel bad for even getting upset or frustrated with her because she has no control over what they are doing to her.  I just have to keep reminding myself that this is all temporary.

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If you follow me on Instagram (@Michelebell21), you would have seen that Addie and I both got a pretty amazing surprise on Wednesday when my Sister-in-law, Julie and Addie's 5 month old cousin Penelope busted into her hospital room!  They flew here from Louisiana and it put a huge smile on both of our faces.  It was also special because it was the first time Penelope got to meet her little cousin Bentley for the first time.  Seeing them together is too stinkin cute!  They are basically the same size, however 17 weeks apart!  Penelope is such a little peanut!





Everyday in the hospital they play a little tune every time a patient receives his or her last chemo treatment.  And every time we hear the music we cheer that their Beast is dead!  I can't wait for them to play the music for Addie.

With Love,

Tuesday, August 29, 2017

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,

Sunday, August 27, 2017

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,

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