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User Image addie.belle Posted: Jan 18, 2018 9:24 PM (UTC)
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(With encouragement from my hubs) I’m putting one of my resolutions into practice. I cancelled Adeline’s assessment this afternoon and am taking care of myself/back/neck. Hubs is coming a home a bit early and I’m taking care of me. Its hard for me to do and makes me feel a bit guilty but also looking forward to some relief. While we wait for him to get home I’ll be sitting on heating pad watching Thomas & Friends with the best view. I just said to her “Thank you for being a good girl while mama doesn’t feel good” and she said, “I love you so much. So so much. Thank you mama”.
User Image addie.belle Posted: Jan 18, 2018 5:10 PM (UTC)
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Traveling with a medically-complex person is a lot of work. It can be overwhelming and sometimes terrifying. This past May we took our first family vacation to Cabo Rojo, Puerto Rico with a toddler who’s on both Parental and Enteral Nutrition. Although I knew we needed a break, time to get away, quality time together as a family - I was scared #af! I’d be a complete hypocrite if I said I didn’t think about canceling the trip 100 times. When we left the runway, with her home team getting smaller and smaller behind us, I felt a combination of anxiety and nausea. Scary stuff. .
#addiebelle #shegotguts #blog #fightlikeagirl
#shortgut #shortgutsowhat #medicallycomplex #gatreoparisis #medicalmama #spoonie #chronicillness #blogger #mommyblogger #momblog #bloggermom
#childhoodunplugged #candidchildhood #letthekids #letthembelittle #momswithcameras #momtogs #cameramama #changingthefaceofbeauty
#tbt to two years ago today. My new preemie was home for only 2 weeks, and she was tube free! I can’t even remember her without tubes. Having her home was so amazing but harder then I thought! She wasn’t growing and was projectile vomiting 12-15 times per day. She never slept and cried a lot. John and I were blissfully exhausted, stressed, and completely naive as to what what still to come with her journey.
User Image addie.belle Posted: Jan 17, 2018 9:16 PM (UTC)
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This is our “everyone got a snow day but we have to schlep down the city for therapy” face. We had PT today and then we dropped off a ton of toys/books/baby stuff to 9S at Hopkins Children’s Center. It’s so important to give back to the place that has given us so much. #givingisreceiving
Lordy Lordy Lordy. This morning I was peed on, in my bed. Next was a diaper blowout. Then we had projectile vomit from Adeline before nap while Jpeg simultaneously threw up huge piles of vomit in my bedroom. I’m sitting here posting this in hopes that a bodily function fairy is on her way to clean up the 4th huge mess of the day. #itsonlynoon #poopproblems #vomiteverywhere #imnotkidding #pilesofvomit #somebodyhelpme
Bath and dressing change in this house tonight- which front to back takes us a few hours. Some parents choose not to bathe kids with a central line. We do it weekly and have an entire system with immediate cap and dressing change following. I miss giving my kid a bath whenever I need and it’s a thing when we do it, but we think it’s worth it. What are your thoughts?? To bathe or not to bathe? What’s your system? Want to know ours?? #lifewithtpn #tpn
It’s the best kind of Monday!! #micropreemiemonday and #3dayweekend Monday to honor an amazing man. I have a few books to talk about #mlk with her today but she already knows we love everyone regardless of their race/creed/religion/sexual orientation/etc and everyone deserves equal rights. Today will just be a day to remind her of a hero who helped make that better. It has been five decades since Martin Luther King Jr. was assassinated, but his words still carry such power.. “True peace is not merely the absence of tension: it is the presence of justice.” “Letter from Birmingham City Jail,” 1963
#martinlutherking #mlk #equality
User Image addie.belle Posted: Jan 15, 2018 3:05 AM (UTC)

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Happy Birthday to the forever baby of the family @courtneycasole who is 21!!!😬😫🍷🥂🍹 I see so much of you in Addie Belle and am so sad I’m all the way over here in MD and not celebrating tonight with the fam. You’re such an amazing kid (eeek I guess adult) who makes me laugh and you have the most amazing heart. Now you’ll be the one with the good stories of the old “kids” you work with. You remind me of your guardian angel and we all know how proud he is of how hard you work and how driven you are all while having a good time and making the most of life. I love you 💗
User Image addie.belle Posted: Jan 14, 2018 4:11 PM (UTC)
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Loving our 3 day weekend!! Yesterday Adeline was all about food and requested pizza!!! So we went out for pizza and she ate a 2 inch by 2 inch piece and a few spoons of ice cream. WOW! Blown away!! Some of you may think well of course she eats those things but has been offered them many times. It hasn’t mattered if it’s junk food or sweets. Both birthdays she didn’t eat a single bite of cake. This morning she didn’t eat anything but that’s kind of how feeding/eating goes with a kiddo like AB. Today we are doing a major overhaul/organization/cleaning of her “theraplay” room. Who wants to see the finished product???
Last ones of these. I’m in love with every single one because it’s so her. Adventurous. Not afraid to get dirty. Spontaneous. And wanting to take advantage of every moment. #howdidigetsolucky
Making her little wishes come true!!! Because she deserves it. John and I were running some errands today and she said, “Addie hospital?” Eventually I want her childhood memories to be more of this and less of doctors/hospitals so when we get in the car together she’ll never think that’s where we are going!!
Yesterday when we woke up and I asked Adeline what she wanted to do on our appointment free day she said “jump in puddles”! So this is what we did....
User Image addie.belle Posted: Jan 13, 2018 1:56 AM (UTC)
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This is the cutest thing ever!! @muntsa.rocafort drew the most perfect picture of AB with her bestie and holding hank. Made our night and definitely framing this 💜💜💜 #mytribe #mypeople
Today we had our yearly Audiological Assessment and baby girls’ hearing was perfect!! 🥂CHEERS to normal testing results!!! Let’s celebrate in this summer weather (50 degrees) and go to the park.
User Image addie.belle Posted: Jan 11, 2018 1:32 PM (UTC)
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#TBT to my little 11 month old 12 lb tubie! She was working on sitting up independently, crawling and began to wave hello. We had started to teach her some sign language and she was our inspiration and still is! #throwbackthursday
Last one for the day from this batch since I’m in love with these 💗
@hello.snuggles blanket - JUSTFORADDIE for 15% off
@gusgear central line wrap (link in bio for code)
@kkrzaa bow LOVE for free shipping
User Image addie.belle Posted: Jan 10, 2018 9:22 PM (UTC)
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While California is getting pounded by rain, (& mudslides 😬) we have been freezing over here AND we survived our first winter hurricane/Boston bomb cyclone. Coldest first week in January ever - with the average of 15 degrees!! We have been living in layers; ski socks (no one is skiing around here), snow hats, grandma cardigans, and leggings with a fur lining. Oh, and I have been INSIDE wearing all these things. Here is a look at what we have been cuddling up in lately! (@hello.snuggles and use code JUSTFORADDIE for 15% off) P.S. Doesn’t she look like she’s up to no good?!
#addiebelle #shegotguts #blog #fightlikeagirl
#shortgut #shortgutsowhat #medicallycomplex #gatreoparisis #medicalmama #spoonie #preemie #micropreemie #26weeker #tubie #specialneeds #raredisease #ivfbaby #rainbowbaby #gtube #gjtube #centralline #tpndependent #mommiesofmiracles #themighty#feedingtube #brandrep
Major shoutout to @gusgear central line wraps. Recently, Adeline took a tumble out of her crib. More like a dive. She claims she "faw offuh cwib", but really she climbed. I was at my parents and while my mom was worried about her breaking her neck, I was worried about her line. I ran upstairs, ignoring the bump on her head, and got her undressed as quick as I could already planning my visit to the emergency room in my head. The wrap did it's job, her line stayed secure. I am so happy that we added @gusgear to our life I wrote an entire blog post about all the reasons why it’s a must have for any child with a central line. Visit or click link in bio to read and get discount code.
User Image addie.belle Posted: Jan 10, 2018 12:40 PM (UTC)
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One thing that matters to us is the softness of the items we use on Addie's skin. She has very sensitive skin, some sensory issues, and we love everything to be super soft. My recent obsession has been buying more snuggly blanket throws and having them all over the house so we can cuddle anytime! Adeline is wearing @hello.snuggles hooded blanket. The material is super soft and its big enough for a toddler. Use the code JUSTFORADDIE for 15% off! Also- which one do you like better- b/w or color? ⠀
User Image addie.belle Posted: Jan 9, 2018 9:25 PM (UTC)
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It’s 40 degrees here which after the past few weeks basically feels like summer. She requested the river so there we went. Her constantly wanting to “wakka da ice paypeg” (walk on the ice like Jpeg- swipe to see) made me a nervous wreck but she had a blast. We missed the fresh air. Winter, you can leave now. We’ve gotten our fill.