How can I find your old blog?
Jake found it for me! It isn’t everything, but it is as much as we have. The stuff that I used to do on microsoft frontpage is likely gone for good. http://jakenreag.com/reagansblob.html
Also, want to know something funny? When I first met Jake in 2005, he told me that he had a blog. I thought he said “blob” and asked what he meant by that. He explained what a blog is and then talked me into starting one a few months later. I blobbed for a few years before I knew anyone else was doing it, and I had never read a single other blog until 2 years ago when I suddenly found out half my friends had blogs. I almost felt like I needed to take a week off from work to stay at home and process it all. “you mean I didn’t invent blogging?” I thought to myself. I still call it a blob to this day…
Does Pip ever cry?
Hardly ever. And when she does, it is because she is in pain or she has had enough of being messed with. Crying just to cry has literally never happened. If you have heard my Piper cry then you know what the saddest thing on earth sounds like. It’s quiet and much like a little kitten meowing, but with a sad face and tears.
What is Piper passionate about?
Hahahaha. This is my favorite question. Her passions evolve with her age and wisdom. Right now she is most passionate about tapping and monkey cards. In fact, tapping has been a consistent passion of Piper’s for many years. We’ll take a picture of the front of the monkey card this weekend so you can get a peek into her passions.
Can I send Piper Jane a present?
That’s nice of you! Send me an email!
What does Piper eat?
She has a gastrostomy tube that goes into her belly. She has a little button called a Mickey that you can take the tube out of and close up so she has a little freedom from her feeding pump. She gets formula and a little rice cereal mixed in. She is on continuous feeds that are slowly pumped throughout the day with a few hours of breaks a couple times a day. She used to vomit a lot and this seems to be the best way for her to tolerate her feeds. She doesn’t eat any food orally. Speech therapy tries to get Piper to taste food (whipped cream, apple sauce, disolving crackers) but Pip doesn’t have any interest and freaks out if you try to put anything in her mouth. I think that is from all the intubating and deep suctioning she got at such a young age.
What does Piper do when you aren’t there? What is her school like?
She goes to school for a few hours, she gets three kinds of therapy, she gets played with by nurses and read to by volunteers. I feel bad that there are three days per week that I can’t be there, but they actually keep her pretty busy on the weekdays. She loves attention from the nurses and they completely dote on her.
Her little school is about 10ish kids. Most of them are outpatient. They play with toys, eat snacks (the ones who can eat) and listen to music. A wonderful volunteer named Judy comes in with a guitar and sings little songs with them. She walks around and lets each child strum the guitar while singing a song with their name in it….”Piper Jane is going swimming in the wattttter, swimming in the watttter, swimming in the wattter”. In case you’re wondering, I’m pretty sure Judy is going to heaven guaranteed.
Do you give her baths?
If she needs one while I’m there! She usually gets one around 5 or 6 in the evening, and I’m there mornings/days. You probably already knew this but Piper is a tub splasher.
What size is Piper? Why is she so small?
Pip only recently graduated to size 3 diapers (hello, little butt!) and is otherwise about the size of a one year old. She is skinny and long and impossible to shop for. That is one reason why she usually wears dresses. Also because she just likes being fancy.
Kids with CCMS are small (yes, there are others!). I know of a young adult male weighing about 75 lbs. I’m not sure exactly why this is, but when Pip was really young, many of her precious calories were being burned just working hard to breathe.
How old were you when you had Pip?
I was 23. Just a little bitty baby myself.
How do you pay for Piper’s care?
I feel a little weird with this question, and I know Jake probably feels weird, and I know for sure everyone who asked felt weird….but you also know how astronomical hospital related stuff is and I don’t blame your curiosity. Well, we have really really really great insurance through Jake’s work. We are very fortunate for that. So far everything has worked out, I hope I’m not jinxing anything.
Does Piper really just hold still while you do her hair?
Yes! She really does! I can’t believe it either! But her hair easily will just explode out of any grand creation I’ve made the second she gets a bright idea…..much like a mad scientist.
~There are still a lot of really great questions, but I’ll probably only do a few more posts because I feel like this might be starting to get boring. It’s not at all boring for me and I’m still getting weird and funny questions about Jake. Example: after the last post someone’s question was “It’s true, your husband really is hot”. Also, “does Jake only smile with his mouth closed?”, “why does he wear his hat sideways”….Believe me, they’re all good. I want everyone to make a formspring so I can start asking awesome questions too.
Pretty Reagan,
I’m tremendously glad you’re taking time to answer questions about the Pipster. It helps those of us Blob-newbies to get up to speed on the fantastic that is you. You are adorable. XO
Thank you so much for opening up about your sweet family, and specifically Miss Piper J. You said you might do just a few more posts in which you answer questions because you thought it might be boring. Oh, I don’t think it is boring AT ALL, and I bet many others feel the same. So! If you stop answering questions, just do it because you are tired of it, NOT because you think it is boring us. : ) At least that is my humble opinion!
The three of you are my heroes!
Dude! So not boring!
I’m a recent Pipollower (that’s follower with a little Pip!). The answers about Pip are anything but boring.
Thanks for sharing with all of us. Your family is an inspiration!!
I think of and pray for you often. The other night I actually fell asleep thinking “Pip, Pip, Hooray!”
*HUGS*
Julie
I so dont think this is boring. I love learning about Piper and think you should keep doing these posts as long as you like doing them. I love all your little Piper nicknames, they always put a smile on my face
not boring at all! keep them coming
You are so awesome (as always) for sharing what you do. It makes us appreciate and love you Breinholts all the more. I agree with Linda P., this is not boring at all, but don’t answer if you don’t want to or are bored by it.
And hooray for Formspring! After I saw yours I wanted to add one to my blog, but didn’t want to be a big ol’ Reagan copycat (although that’s not such a bad idea ’cause you’re awesome). Maybe I will now since you said it’s okay. Ha!
And what you said about the three days per week you can’t be there really resonated with me. I often feel guilty that my mom has a senior companion and volunteers who come and hang with and read to her, because I feel like they’re only there because of what I’m not doing. But you’ve helped me see the situation for what it truly is: I (we) can’t physically be there all the time. We have to work and look after ourselves so we have lots to give to our mamas and baby birds when we can be there with them.
Hugs!
Add me to the list of those totally not bored with the q&a’s!
Wow, the more you share about Piper Jane the more I am smitten. Can’t wait to see the front of the monkey card!
Not at all boring! I also found you from cjane and have so enjoyed reading your stories. Thank you for sharing your lovely daughter with us and for taking the time to answer so many questions!
Someone took my question! I wonder about the sideways hat, because out here in the wild west only gang members do that!
These answer posts are NOT boring! I have been checking your blob mulitple times a day hoping there would be a new “question/answer” post.
You are so nice to share your life/world with us. I have a better life/world because if it.
The questions are NOT boring, definitely! Please keep doing them. It’s amazing how many questions that I’ve had have been asked by someone else. I’m new to your blog, the questions are helping me catch up!
NOT BORING!!!!
So funny the questions about Jake! I only have high school memories about Jake, but they include a sideways hat. Actually cant remember if he wore his hat sideways in high school. But still…..
Wish he would have taken a picture of his handlebar stache.
All of those Breinholts are groovy.
xoxo
Reagan, Hooray! We love the questions, can’t you see? Don’t quit. : )
p.s. I love the image of Piper as a mad scientist. Made me smile.
I’m with the others – these posts are not boring at all! As long as they are not boring to you, please keep them coming. I love getting to “know” your family – especially the darling Pip! She really is a treasure. Thank you so much for being open to sharing all of this with us. Just another reason you are fabulous.
not boring at all!
Not boring! So glad for all of the questions and answers! Love you guys!
Did you see this?
Alexa Chung For Madewell
http://www.refinery29.com/exclusive-alexa-chung-for-madewell-ads-revealed.php
It made me think of you!
(Hi Pip!)
I love this post, I like learning about little pippy and how awesome she is. Am I allowed to call her nicnames?
Wow! Again, lovin’ this! I wish I could meet you (and Pip!) in real life. But it’s a long drive to NY from Idaho…
are you kidding me?… boring? NOT at all!
i also am a “pipollower” from cjane
keep em coming reagan!
I can certainly feel your pain about not being able to see Piper Jane for three out of seven days a week. It must be really hard on you, but just think of this…..If Piper were a child that lived at home 24/7/365 and you and Jake both worked, your time together would be filled with LOTS of “have-to’s,” “need-to’s,” and “should-be’s.” Though you could be able to spend more time together, that time can slip by so quickly before we realize that we have been with each other, but not actively involved with each other. The time you get to spend with Piper Jane now is the type of quality time that most parents crave, yet don’t seem to take the time to foster. You give 110% of yourselves to Piper all the time, especially when you are all together. The amount of time that you have together during the week may be limited, but the quality of the time is probably better than most families share in a normal week. God bless you!!
This has been awesome! I hope you continue to answer the questions. I popped in a few times today to see the latest update
So very much not bored. And people will ask and ask forever so now you have links!
again- so amazing at your following. it’s like KAPOW!
anyways, i’ve had a formspring account for a few months but am too terrified to put it up. what if people ask snarky stuff? (i just hid under my desk)
Totally *not* boring, though it must be pretty strange for you to have been curious about the medical bills, because dude…they are cuh-ray-zee. My firstborn was life-flighted – a 15 minute flight cost $15,000, of which insurance paid a very small fraction. We’ll be making payments for a loooooooong time.
Annnyway – loved the “you mean I didn’t invent blogging?” (pretty sure you DID invent blobbing, though – well played!) and I’m thinking you may also have invented the incorporation of Formspring into a Blob, but then again I’m probably not the best person to make that assessment since I’d never heard of Formspring before here.
I’m rambling. Thanks again for doin’ whatcha do!
Oh, you can read about our little Life Flight scare here: http://www.beckibakes.com/2010/01/27/reality-check-life-is-fragile/ but it was really nothing compared to anything you guys have been through.
Praying for the Pip and her parents, too!
-Becki D.
another vote for “not boring!”
since i’ve only been reading your blob for the past 3 months or so, i’m loving all of this pip information!
whoa. that comment I left got all kinda of jacked up. Sorry bout that… <>
Shoulda said something like: Totally *not* boring, though it must be pretty strange to have everybody all up in your business! And then I confessed to also being curious about the medical bills because of my own horrid experiences with them.
Sorry!
Not bored AT ALL!
Please continue! I am a new follower and have completely fallen in love with Piper and adore you and your family!
Reagan-
You have no idea who I am, but I want you to know that you inspire me. You inspire me to be a better mother, a better person, a better friend, to do more fun and crazy things in life. I found your blog through a friend of mine whom I believe went to college with you at SUU.
I just wanted you to know that you are AWESOME!
-Tori
SO not boring…I love you giving this peek into your life (thank you). Would love to read more about your trio.
Don’t stop answering questions! I love it!
Some great questions I was too afraid to ask…even anonymously. Thank you for sharing. I think so many of us have ZERO idea what it means to have a child with special needs, let alone extra special needs like sthe cutie pie Piper, and cannot imagine what life is like, all the little details about how it all works out. So, thank you for sharing – it for sure is not boring!
My friend just told me about your blog and I’m so glad she did. You and the fam are so fabulous! Let me know if you’d like to share anything about adorable Piper on my blog kidzorg.blogspot.com
This post about pip is so NOT boring and I’m glad you shared every bit of it! Looking forward to getting to know you more.
You definitely should not quit posting these. I love reading the questions and answers. It’s fascinating!!
You are totally awesome for being so open about your life, it’s very inspiring. Blessings to you and your family today and always. Your blog is a gift to all who read it so thank you.
xoxoxoxox
estroJen
NOT NOT NOT boring!!! Please keep answering.
If you ever feel like printing your blog out in to a book I’ve used blog2print.com and they did a beautiful job. You’ll want to save these beautiful blog posts of your life!
Not boring to me!
Love these Q&A sessions! Please do continue.
Not boring!
Please don’t stop answering Formspring questions. I’m rivited by each and every question/answer. I’m just trying to think of the perfect question of my own!
“her hair easily will just explode out of any grand creation I’ve made the second she gets a bright idea…..much like a mad scientist.”
My daughter too! and I wish I had thought of this description, becuase it fits perfectly!
hello! Your daughter is darling. Because she will have a hard time speaking, have you thought of using sign language with her?