February 29, 2012

Look Mom No Tube...cause I pulled it out...twice in one night...

February 29, 2012/ Chasing Hazel

Yes that's right...Miss Hazel pulled her feeding tube out twice last night on the nurse. When I went in the morning to feed her, this is what she looked like. So we thought WOW maybe she wants to eat all her meals orally from now on. We took it as a sign that she was ready... So, when I went to feed her, she looked like this photo, the whole time. She would not wake up to eat no matter what I did. Needless to say we had to tube feed her this whole meal. Apparently she is all talk, which could bode well for us as she gets older. But for now the feeding tube has gone back in.

What an adorable face she has with no tubes in it. Thought I would share.

Chasing Hazel

Welcome

Hi!!! (I wish I could use the 'wave' emoticon right here) So very kind of you to stop by and meet our little family. Prepare yourself to read about the daily shenanigans of living and loving life with Down syndrome. Oh - I should warn you - sometimes there's this neurotic women who takes control of this space and rants about the 2 tiny humans (ahem…terrorists) that are in current reign of the household. Join the chase!

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First day of summer views 👌🏼 Happy Friday everyone! Anyone have any plans?

First day of school 🙌🏼🙌🏼 Swipe • Last day of sch.... ahhhh forget it 🎧📱 #hazelandnola #weout✌🏼

What. Is. Happening. #ItsonlyTuesdaydude #nolathinksshescool

Literally the most present, involved, caring, funny, silly, comforting, supportive, patient, loving, tender, empathetic father there ever was. The girls lean on him for everything. There are certain things he can do for them that no one else can, not even me. The relationship they have so is incredibly strong. I know they are going to be more evolved human beings because of, and with his influence. He reminds us all that there is good in the world. He sees it. He lives it. He shares it. Happy Father’s Day @seegs34

They say, “there’s a season for everything” that “you can’t always get what you want” 🤷🏼&zwj;♀️ But I say, forget that (and if you know me, replace that f word for another one), and buy a truck. Then you can alwa

They say, “there’s a season for everything” that “you can’t always get what you want” 🤷🏼‍♀️ But I say, forget that (and if you know me, replace that f word for another one), and buy a truck. Then you can always get what you want and it’s always truck season 💪🏼🤘🏼 For reals though... I’m so grateful for this life, the sacrifices we’ve made, and the work ethic we have in order to have nice things. Because actually in fact you just can’t always have what you want, you have to work your ass off first. My new wheels guys. LOOK AT MY NEW WHEELS!!! 😱

It’s a crazy season we are in right now. Not seeing these 5 together has been one of the toughest things. Yesterday was a good day ✨✨✨ #seguincousins

Crazy fun All Together Fitness comp today. And by fun I mean fun up until the 400m bear crawl (pictured here). This was the last of 4 events today. I literally almost died. At one point I asked for a panini cause I thought it would make me feel better. I also asked for someone to dangle Netflix in front of me so I could just be distracted. The only reason I didn’t quit was because my kids were watching. We all started at the line together and they all met me at the line when I fell over it 😂 My very first fitness comp to date. Gotta say, I’m still standing 😂😂 Loved hanging on zoom with so many today and being a part of such a cool thing even though we are all still apart. Missed the All Level Crew today so much but so thankful for all the work they put into this event. Get after it folks! @alllevelfit #seegstimesfour

14 years ago today I literally almost jumped into his arms by the time I met him at the alter. Been together for 22 years total. It’s incredible how much we have shared together over the 22 years. After our wedding 14 years ago, the number one comment about that day was how big my smile was the entire day. So many people said it. My face hurt from smiling. So much time has passed. My face has hurt from smiling many days since then. It’s also hurt from crying. And fighting. And being exhausted. Life has thrown us so much, so many gifts (even the ones that didn’t feel like gifts at the time), and we are still standing. Sometimes we just have to make sure the other is close so we can lean in.

✌🏽✌🏾✌🏿My heart has been heavy. My head has been spinning. I have been reading and listening. And reading and listening. I can’t even begin to think I have even scraped the surface of the nuances of complex systemic issues that have been so ingrained in us we don’t even realize it. Racism - still alive and well in 2020 and thriving on fear. I will participate in BlackOutTuesday for BlackLivesMatter. I am of the opinion that I shouldn’t have to say “Black” lives matter because it’s redundant. Of course they do. • Here are some accounts I’ve been following or recently started following. Give them a follow. Head over and start reading. I am realizing there is a great deal that we do not know, and we can’t know what we don’t know. • @theconsciouskid @rachel.cargle @austinchanning

Hazel has been doing great! She never complains she’s in any pain. She wants to play and dance. She’s kind of a grouchy Gus on her best day so I think she’s a little more grouchy than normal 🤷🏼‍♀️😂 Her and Nola are always laughing about something. So far so good! #hazelandnola

She’s home!! 👏🏼 She super super cranky and tired, poor little thing. Thank you so so soooooo much to all of you who took the time to comment, like, text, call.... it really means so much to us to know how much this little lady is loved. I was totally overwhelmed with emotion reading all your kind words here and on Facebook 👌🏼😭❤️

This little nugget is having some work done today to fix her obstructive sleep apnea. The hospital is 2 hours from us. Only one parent is allowed to be with her (thanks Covid). Matt is the parent she prefers so he’s there with her. I’m just trying to keep it together. I may or may not have cooked all afternoon yesterday to ensure they have all the meals they need. He probably brought a HUGE cooler full of food 🤷🏼‍♀️ Being so far from them is super super hard but I get it. Last report was that Hazel was in good spirits, watching Frozen on her iPad as they wheeled her in. Usually Matt goes in with her until she fast asleep but again thanks to Covid, he wasn’t able to today 😩 We appreciate all your thoughts, prayers, and positive vibes. She’s a strong girl, I just wish she didn’t have to keep proving it 😭 #hazelismyhero

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