Wednesday, February 27, 2013
One week home & it has been nothing short of AMAZING!!! Ryker is doing incredible & smiling the entire time! I have never in all Ryker's life seen him so good, so relaxed & so happy & completely content all at the same time! He lets his arms hang loose (his arms have been extremely tight since ECMO) for the first time in almost 5 months & he is jabbering more than he ever has before! He is kicking his legs & squirming his entire body when he is excited, like as if he wants to get up & dance! He is the cutest & happiest baby I have ever met!! All his new wonderful Home Nurses are constantly commenting, saying- by the looks of him, if they hadn't seen his scars they would never guess that he had been through so much! He is just so sweet regardless of it all! I am completely adjusted to all the meds & busyness. I had to get extremely organized in it all before I could feel like I had an extra second in the day. He gets meds every 2 hours around the clock, all enteral through his Gtube besides his Lovanox shots that he gets one in the morning & one at night, which is ABSOLUTELY horrible!!! Breaks my heart every single time! We always have a nice long cuddle time together after the shot & that seems to lessen the blow..:( He has 20 medications, along with a Multivitamin, Iron, 2 different lactobacillus probiotics, Melatonin, & a green combination that I have added all in to keep him as healthy as possible! I have LOVED being able to finally have say over what gets & doesn't get! I can tell a difference because of it too! :) He is now on the perfect day & night schedule & pretty well sleeps through the night....it's just his every 2 hour meds that keep us up, but it's so-SO worth it, those meds are what keep him alive every day of his life & I am so grateful for all of them & SO grateful for his Gtube so that I don't have to make him taste all those yucky meds either! So bottom line is....IT HAS BEEN MORE THAN WONDERFUL! Every single second of ALL OF IT!!! Watching his face light up at every new thing that he has never seen or experienced before, is beyond all words- PRICELESS!! This boy deserves the world & we are going to give it to him & it excites me more than I can even begin to describe! Sorry I have been so bad at updating, we are just enjoying every second! Thank you all for your kind words, love, support, prayers, cards, gifts & all!! You all have been such a great support group & FB Family through it all!! ♥ ~ Rachel
Tuesday, February 26, 2013
Ryker and his family are loving life with him home. Rachel posted that he is so happy all day long.
|Ryker's 24 hours of Meds drawn up & ready to be separated into his every 2 hour baggies. I think I can now add Pharmacist to my job title, along with Mom, Doctor, Nurse & Hairdresser :) Rachel via FB|
Wednesday, February 20, 2013
Ryker home with his Family!!! Feels AMAZING!! ~ Rachel
The amazing and talented Myndi with Myndi B. Photography documented Ryker's entire homecoming. Click the link below to see the amazing and priceless photos.
Monday, February 18, 2013
I am Finally at the point that I feel ready to make this announcement..... We are currently working as hard as we can to get our sweet Little Ryker home by this coming Tuesday!!! We know full well that this date could easily change, but regardless of "when" OUR BABY IS COMING HOME!!!! :) As of now he is set & ready to go, the only thing holding us back is all the busy work from him being in the hospital his entire life. I cannot even begin to describe how excited we all are about this! It has been our Family's DREAM for way too long! Thank you all for your love, prayers & support! Please keep the positivity coming for an uneventful home time! :) ~ Rachel
Got Ryker's bed all set up in my room, thanks to some AMAZING friends! This is the first time my home has felt like I have a baby & it is beyond wonderful! Feels so good knowing my baby boy is finally going to be at home where he belongs!! ~ Rachel
*If you would like to mail an item please email Lori at email@example.com
Rachel's cousin Arianne wrote a story about our amazing Miracle Ryker and his amazing family's journey. The article can be found here: https://www.ksl.com/
index.php?sid=24108069&nid=1009 &title=opening-our-big-hearts- to-help-little-hearts&fm=home_ page&s_cid=queue-1
Thank you Arianne!
The amazing Maddi is putting on a second online auction for Ryker and his family. If you are interested in either donating or bidding please visit the page. The auction ends on Ryker's first birthday March 7th. Items will be listed until the end of the auction. Thank you :) https://www.facebook.com/pages/Auction-for-Miracle-Ryker/106857162816253?fref=ts
Monday, February 11, 2013
Update from Rachel Saturday 2/9/12 Ryker has had a really good week! We are just trying to get him recovered completely from going to the Cath Lab twice this week. He extubated great with no problems & has been pretty much catching up on sleep ever since. We didn't even have to start any extra heart meds through the 2 Cath process!! He is such a tough boy!! Jason & I have been & are currently in lots of training making sure we know all the many in & outs of Ryker's needs & VERY most importantly we are continuing to push towards discharge hopefully sooner than later. :)
Tuesday, February 5, 2013
Most important updates from Rachel via facebook
#1 Im sorry it has taken me so long to update. The last few days have been beyond all words Emotional!! Ryker handled his 5 hour Cath very well, however, the news we received afterwards was not at all what we had hoped for! I am not to a point right now where I can talk about the details, but I will say that his PVS is back & worse than it ever has been before. We are currently trying our absolute hardest to stay as positive as we can so that our little Ryker can feel all the positivity that he deserves. It kills me to say this, but Ryker's Broviac line broke last night, so we are prepping him to head back the the Cath Lab soon to get another central line placed, please continue your much needed prayers for my sweet boy! Thank you all so much for your kind words & prayers during this hard time, we appreciate it all so much!!
#2 Ryker is back from the Cath Lab & doing well. They were able to get a new subclavian Broviac line in place & pull the old cracked line. They didn't have to do Transhepatic (through his liver) this time so that is so exciting! We are in hopes of extubating him either tonight or first thing tomorrow morning. The sooner the better so that this feisty little guy doesn't pull the breathing tube out himself! I love his feistiness, I know it's what gets him through! Please pray that extubation goes smoothly so we can soon be back on the road to recovery!
#3 Please hold your babies tight for me tonight, as I would do anything in the world to hold any of my 5 babies in my arms at this moment! My handsome big boys who are 2,000 miles away in Utah, my Beautiful girls who are 70 miles away in Western Mass & my Amazing little Miracle Ryker who I am sitting right next to holding his perfect little hand, yet Ican't snuggle him just yet....I am praying by morning he will be comfortably in my arms!! Please live for today & THIS moment & hold your babies close!! I am so grateful for an Amazing friend who loves my girls so much that she has them tonight, which makes my Husband being here with me during this hard time possible, so I don't have to do it alone. Thank you to the MANY wonderful people that are a part of our journey in anyway! I love & appreciate you all very much!
Fundraiser in Utah
Hey Ryker fans, I am Ryker's aunt. I am currently putting together a fundraiser here in Salt Lake, Utah for this sweet little boy! I am just wondering if any of you would be able to help out. I am going to be doing a bake sale at the Salt Lake Community College Taylorsville campus on Valentines Day. I am just hoping some of you would be able to either donate baked goods (they can't be homemade since it is at a public school), money for us to be able to buy some baked goods, Wor your time at the school to help me keep it organized. We are going to be keeping the theme of Valentines day, so we are thinking things like cookies, chocolates, or even flowers. We are having a lady with a food handler's permit dip strawberries, raspberries, oreos, and all sorts of goodies for gift bags, but we need help getting all of the supplies. Please private message me, or email me at firstname.lastname@example.org if you will be able to help in any way! Everyone is welcome to come and buy some things also. Thanks everyone! -Shaylyn
Maddi is once again putting on her fabulous online auction for Ryker and his family starting Valentines Day and ending on Ryker's birthday March 7th. The last auction was a big hit. If you have any items you would like to donate please visit the facebook page set up for the auction. If you would like to see items that are going to be up for bid please frequent the page from now until March 7th so you do not miss out.
Sunday, February 3, 2013
Please send extra positive energy and prayers to Ryker and his family. Ryker will be heading into the cath lab tomorrow and they all need our love. :) Rachel posted the following today 2/3/13
We received some good news & some not so good news yesterday.....The good news is- We did an echo to check on Ryker's heart Function now that he is completely off the Milrinone & surprisingly his heart function looks better than it did the last time we checked!! However....during that echo we also found that the gradient in his Pulmonary veins is a lot higher that we like it to be, meaning that his PVS is back..:( So tomorrow Ryker will be going back to the Cath Lab for his 7th Cardiac Cath...Jason & I are without words! We just want so badly to get our baby boy HOME & away from this hospital life!!! Please pray so hard for Our Sweet Little Ryker today & tomorrow!~Rachel