(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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Addie sounds like the bravest little girl! What a champ! I work in a hospital and most people are counting down the days,minutes and seconds until they get to be discharged home. She seems like the best patient!
ReplyDeleteBy the way, Lokai currently has yellow bracelets benefiting pediatric cancer research. Great way to show support for Addie :-) continued prayers going your way.
Thanks Breda, I need to get my hands on those!
DeleteI'm sorry to hear about your mom guilt Michele. It's very normal and I'm sure it's very hard for you.I wish I had some advice about the meds-I had a hard time with my boys too! Please don't be so hard on yourself- you are an amazing mom & doing a great job. You are receiving incredible support thankfully-and like you said-it takes a village! I'm thinking of all of you and sending my love & prayers. xoxo Lori
ReplyDeleteThanks Lori!!
DeleteAddie is a freaking champ, just like her mom! Don't beat yourself up over time being spent, you are handling it better than any mother can, and you yourself are a champ for juggling your time like this. Thank the Lord that the spinal tap went well. Many more prayers for Addie and your family, can't wait for you guys to go home and feel at least a little bit more normal.
ReplyDeleteBelieve it or not but after you shared your situation, it's really inspired and compelled me more to pursue peds. (I'm a nursing student!) I always had the intent to, but seeing how kids like Addie are so resilient and are literally freaking superheros, it'd be amazing to work with them everyday! Keep strong Michele, you're a superhero yourself 😉
(P.S definitely purchasing the Lokai bracelet for childhood cancer in support for you guys!!! Xoxo)
Getting kids to take medication can be such a challenge. Are you getting the steroids from the hospital, or from a pharmacy? If you are getting them from a regular pharmacy, my suggestion is to look for a compounding pharmacy in your city. I work at a compounding pharmacy myself, and we can do all sorts of things to make medication easier to take for children. If the liquid is nasty, sometimes adding extra flavors to it can make it taste better. Or maybe it can be made in a gummy bear or lollipop. I would google "compounding pharmacies" in your city and see what they can do. If that's not an option, you could try crushing the pills and mixing them with a spoonful of jam. Grape works pretty well, it tends to mask the flavor better than other things, but any flavor she likes would work. You could also offer her a piece of frozen fruit or popsicle before giving the crushed up pills to her. The cold will freeze her tongue a bit, which will cut the bitter taste. Chase it with some white grape juice, again it will help mask the bitterness.
ReplyDeleteI hope these suggestions are somewhat helpful! You are doing an amazing job Michele and Addie is a rockstar!
You got yourself one brave girl <3 my prayers are always with you and your family. God has blessed you with amazing supports and I am so happy for all the great news I have been reading. You are one hell of a mom and all you are doing is insanely amazing. We are with you every step of the way, and most importantly god is with you every step of the way. I love how much faith you have and your positivity and please know that you are impacting so many of us with that. Thank you for teaching us how to be brave and patient and have an incredible faith im god. We all love you xx
ReplyDeleteMy daughter learned how to take pills by putting a little bit of whatever she's taking them with (water, juice, etc) in her mouth and not swallowing that. Instead push the pill into it and swallow them together. That way she won't taste the pill and it's just like swallowing liquid. Hope this works!
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ReplyDeleteTo help Addie with her pills, you might turn it into a game. If you have a 'name' for her cancer -- the big baddie, Bob, whatever -- then the pills are what are swallowed to get rid of 'Bob'.
ReplyDeleteI can only imagine what you're going through Michele but from what I can gather you are handling everything like a champion and not only can your viewers/readers and your family recognise this, but I'm sure Bentley and Addie can tell as well. In terms of helping Addie to swallow pills, I don't have any tips on how to help mix it into food but I work as a Speech Pathologist and one thing that we encourage anyone when swallowing pills is to tilt their chin and head to their chest. The natural reaction when swallowing a pill is to throw your head back but this actually makes it harder. When you tilt your head forward you open up the space in throat whereas tilting your head backwards closes this space off. I'm not sure if this is something you already know or have tried, but if you haven't it may help Addie. I'm thinking of you and your family each day.
ReplyDeleteJess xx
I don't have advice,but I do have continued love and prayers for you and your precious family.
ReplyDeleteThinking about you all every day and sending the best wishes for Addie and her recovery. I use jam, crush up the pill and put in the centre of a jam dollop on a spoon. Also, don't chase with OJ due to the acidity, and I would avoid anything too cold as it sometimes feels like it dries up the throat and the pill goes rogue. Hopefully she finds something that works for her. <3
ReplyDeleteOne trick that worked for my children was crushing the pills then diluting in water and adding favorite drink just in a medicine cup. I needed them to know it was medicine and wouldn't taste like their typical drink but they had to take it. Hope you find something to help. Or she gets the hang of swallowing pills. 4 is so young to learn this. Hang in there. Xoxo prayers everyday for you and your entire family.
ReplyDeleteI feel so much for you Michele. Your hormones have to be all over the place having such a small baby and you are doing so well despite it. Don't feel guilt, all your children are lucky to have a mom who loved them so much.
ReplyDeleteTry crushing her pill in fruit spread, jam or the fruit filling that comes on the side of Greek yogurt, lots of flavors to choose from to give her variety
ReplyDeleteHey Michele, ok one tip I have that worked with my autistic daughter is to crush them and but them in a drink of her choice and freeze it into an ice pop, or crush it into ice cream and add a little of her favorite syrup(really trying to combat that nasty taste) As for you girl don't feel guilty. Your doing the best you possibly can. My husband got hurt when I was pregnant with our last baby and I had no choice but to go to work and I had to leave him very early on. I cried every day. However I knew I had to do it. Addie needs you now and it's Bentleys natural instinct to love his mama. It's hard, so hard, but you are strong as a bull and will pull through this. Soon you will be home wit all 3 kiddies and will feel so much better. Stay strong Michele. Just keep thinking of the positive, which is the good news you been getting. I will continue praying for all of you😘
ReplyDeleteAlmost forgot I don't know if your daughter likes Gatorade but you can try that with a little addition of water. Blue was the one I used when I needed to give my daughter medicine
ReplyDeleteMichele, I just want to let you guys know I am keeping you in prayer. I have followed you for a long time (since you were doing videos in your closet at your parent's house). I was just able to catch up on all your blog posts. The news of Addie being sick is so shocking. This too shall pass. She is a strong little girl and she has an awesome support team. Prayers for healing and comfort for her and of course all of you. I know it has to be tremendously hard on You, Dan and Nick to see your little girl so sick. Don't forget to take care of yourself during all this. -xoxo Jennie Perkins
ReplyDeleteAlways praying and thinking about you guys! Addie is a strong little girl! dont ever feel guilty about anything, you are doing your best! ❤️
ReplyDeleteAlso forgot to give you a tip for the pills...this is probably the worst but usually works like magic. crush the pill and put it in a small medicine cup. then add soda. (I know soda is the worst, but kids love it.) Usually grape soda will hide the flavor of the pill and the kids think it's the best thing in the world to drink soda out of those little medicine cups. and then one gummi bear as a chaser.
ReplyDeleteI think about you and Addie every day! My whole family is rooting for a wonderful recovery and praying every day for all of you! I'm glad she is doing so well! The mama guilt will come and go but just know you are doing the absolute best you can and that is always an amazing thing.
ReplyDeleteSo glad Addie is handling everything so well. I take steroids everyday and they are nasty. They start dissolving as soon as they hit your mouth. Maybe try putting them in ice cream or a smoothie? Hope you are getting rest Michele and don't feel guilty. You are where you are supposed to be right now. This is temporary and no one will suffer from it. Sending many prayers to your family ♥️🙏🏼
ReplyDeleteI've tasted the liquid steroids and I can vouch that it is absolutely the worst thing I've ever tasted. A pediatrician made me taste it during clinical. Pills are rough for kids! Start slow with allowing her to chew a regular M&M and then ask her to bite it twice, then once, then not at all and swallow a bit at a time. This gives her control of when and how to swallow. Just keep reminding her that she has to do this so she can get better and tell her that you know she can do it because she's been so brave through all of it. It may also help to make a game out of it, I know my 4yo loves a competition. You see how many she can get down and how many mommy can get down.
ReplyDeleteMom guilt is the worst. Try to remember you are doing great and you're a great mom! This is temporary and while so hard it will pass. Remember that self care is so important when you're a caregiver and a caregiver to a sick child. It's the old you gotta put your mask on first, before helping anybody else when that plane is going down. Hang in there and know you and the family are well loved and you have so many rooting and praying for you.
Thinking of you guys especially little Addie on and off all day every day. It sounds like she is an unbelievably strong and brave little girl, and that she gets it from her mumma! How you are managing to cope with all this plus a newborn is absoltely beyond me, you're incredible. Make sure you look after yourself as much as you can too, you're the glue that holds everyone together. Sending big hugs xxx
ReplyDeleteA trick we use in the ER is to have the child turn their head all the way to the right, take a sip of juice or water with a straw and hold it in their mouth, pop the pill in, and have them swallow while their head is still turned. When the head is turned the pill doesn't float to the back of the throats and cause them to gag. Goes down a lot easier.
ReplyDeleteThe first time I had to take pills, my mom stuck it in something and I ended up chewing them instead of swallowing! After that, she laid me down on her lap, with some orange soda in a waterbottle (that didn't leak). She out the pills in my mouth and stuck the water bottle in my mouth so I would drink without thinking. Afterwards I got a snack, and got to finish my soda! I've never had problems taking pills since! Don't make it a big deal until she actually does it without issues.
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