Reality check

Last night was a big reality check for me, thanks to an incredibly caring and thoughful ER Dr. who took the time to talk to me amid the chaos of the ER. Ashlyn awoke yesterday with a high fever, and by 4PM her fever was over 103' and she was not able to keep her meds down. So I took her to the clinic, thinking it would be a simple in and out in a hour or so type thing, but no- it ended up with them sending her to the ER and the process took 7 hours.
In the two weeks since Ashlyn's diagnosis I have been in this bubble so to speak. I figured since we have a diagnosis, she'd take the meds and we'd move forward, some days being better than others. Life would be full of rainbows and sunshine from here on out. There might be a few blips, but everyone has those days. Boy was I wrong. I have done some reading, but nothing I have read has truly prepared me for having a child with Crohn's. How waking up with a high fever isn't something I can let her sleep off. It means going to the ER for bloodwork, IV, x-rays, etc. How quite often bacteria invade the raw areas of the intestine and wreak havoc in the digestive tract. How even having a runny nose can cause irritation that can lead to problems. I have been trying to focus on the positive aspects of this disease, but I am finding more and more that the positive stories are few and far between. Most experiences with this disease are far from positive. People are quick to say how sorry they are for her, and happy to speak the truth about the negative experiences they have witnessed by having a loved one with this disease, which I am OK with. At first I would just tuck them into a file in my brain marked, "surely this will not be the case with Ashlyn", and thank them for their honestly. But as I sit here, that tucked away file has blown up and  all these "horror" stories, I will call them, are invading the rainbow and sunshine places. Filling my head with all the bad that comes along with Crohn's.
I have shed some tears this morning. I have looked into the eyes of my sweet baby girl and felt her pain and suffering. I have prayed to God to take it from her. I have felt my heart drop as I cannot tell her that she is going to feel better soon, because that is what I have been telling her everyday. And she is not. I know this is going to take a toll on her, as it is all of us who love and care for her, and do not want to see her suffer. Today I will walk on the dark side of this disease. I will got to the pharmacy and get more pills for her to take. I will buy more Tylenol to fight the fever. I will look at my daughter and my heart will ache as I have to watch her endure whatever it is her body is fighting. I will pray with all my heart that she will get well. That this will be the worst this disease will have to offer. But I will know that at just two weeks into this, I need to face reality. This is now our life. We need to continue to live day to day, hour to hour. Prepare for the unexpected and roll with it. But more importantly, we need to continue to seek and embrace the positive, because there is a rainbow and sunshine out there.

Great news and some layouts

I have some great news to share! Ashlyn had a CT-E on Monday to see the extent of the Crohn's Disease in the portion of her small intestine that was not visible via scoping, and overall the results came back normal! yay!!!! I am SO grateful that she is still in the early stages of this disease and that hopefully she will be able to start being an 11 yo girl again. :) There are some areas that are "non-specific" (oh how I loathe those words) that will need to be monitored, but I am going to keep the focus on the positive.

This disease has a mind of it's own and we are going to take it day by day and deal with what may come today and not worry about tomorrow. The new formula she is on, as well as the medications are also slowly starting to work. I can see pieces of "Ashlyn" emerging, and it makes this momma's heart full with joy! She has been laughing. A lot. Smiling more. Playing with her iPod touch. (you know a kid is sick when they get an iPod Touch for a Christmas gift from her brother, and then barely touch it for months on end.) She's not lying in bed alone, but instead has been camped out on the sofa in the living room to be among family. She doesn't complain as much when I tell her we are taking our daily walk around the block, however she is grateful for all the rain we've had lately because then we don't go. We took her to the park for three hours the other day, and although she spent most of the time lying on a blanket on the grass, she did walk around and let me take a few photos of her. :)

She takes long naps throughout the day. She cannot walk for long periods of time or her legs get wobbly and give out. She still walks hunched over in as much of a fetal position as she can to help ease the pain. She carries a bucket with her everywhere "just in case" she has to vomit. She complains 3 times a day when I give her her medication. The thought of food does nothing to appeal to her senses. We still have a loooooong way to go, but in time, we'll get to a place where she's feeling good again and will eat and play and be happy again.

In some other good news, I was asked to be a design team member for My Scraps and More! yay! Along with three other super-talented ladies. Be sure to check it out, there is a fun contest happening soon.

I leave you with two layouts today: both created from challenges at My Scraps and More.

My Minds Eye papers, doodlebug and pink paislee stickers, Daisy D's punch out alphas, twine, Jillibean Soup Correguated Shapes and paint.

Echo Park paper- LOVE it!

some layouts and a fun contest at My Scraps and More!

I have been on a creative roll lately and I have to give a lot of credit to the daily challenges over at My Scraps and More. They have provided me with endless mojo and it's fun to see how many I can do. I managed to get 13 of the 26 challenges done last month, which wasn't too bad. :) Here are a few: I will share more during the week. 

really old school papers here- I have a huge stash of Chatterbox! lol

There is a super fun contest that is coming up over on My Scraps and More! Here are the details:

Please join us for 8 fun weeks of challenges and games, looking for the first "My Scraps" talent star! Starting June 3rd, and each Friday thereafter, a challenge will be issued. You will have until the following Thursday at midnight eastern time, to upload your challenge into the appropriate thread on the forum to continue on in the My Scraps talent search. At the end of the eight weeks, A My Scraps and More Talent star will be rewarded with a box of scrap goodies for sharing their talents! Along with the grand prize winner, someone will be randomly chosen each week among the participants of the challenge, to win a prize as well!

points: challenges 10 pts each
games 5 pts each
referrals 2 pts each

The first challenge will be issued June 3rd and the last one will be issued on July 29th. (we will take a week break from July 22nd-28th) My Scraps & More's talent star will be announced on August 5th!!

This is a non-elimination contest. All are invited and WELCOME to play! There is no right or wrong way to scrapbook. As long as you are recording your memories for years to enjoy, that is all that matters!! I look forward to be inspired by all of your talent!!


Read more: http://myscrapsandmore.proboards.com/index.cgi?board=info&action=display&thread=264#ixzz1L9WfYjGJ

 

head on over and sign up! It's a wonderful new website. :)

 

Tomorrow Ashlyn has her CT-E. I am praying that she does not have any more sign of disease in her small intestine.

 

 

SPRING banner and You make my Heart Soar layout

Happy Thursday! :) Today I am going to share a Spring banner and a layout I made using the Springtime Collection from Echo Park Paper. These papers are beautiful and perfect for Springtime projects. 

and a layout:

the title of the layout came from a quote challenge on the My Scraps and More site.

Thanks for stopping by. I hope you have a beautiful day! :)

Ashlyn has Crohn's Disease and 'Good Times' layout

Happy hump day. All the doctor appt's for the week are over- yay! I am looking foward to staying home the next two days. Life has been so full of visiting doctors, testing, traveling across the state, etc. There has been something medical scheduled for Ashlyn just about every week day that she has been out of the hospital back at the end of Feb. It has worn her thin and her patience is up. I am just running on autopilot now, taking things one day at a time. She has one more major test on Monday, May 2, which will be a CT-E- this will be the final piece of the puzzle and then we can continue to move forward.

Ashlyn was offically diagnosed with Crohn's disease on Friday April 22. I knew the diagnose was coming, but it was still hard to hear. At least we have something to call this "thing" that has wreaked havoc with her poor little body for the last 4-5 months, even years esentially. To our extreme frustration, the peds GI doctor here in Spokane was so stuck on her abusing laxatives and having an eating disorder, that he ignored treating Ashlyn as a patient, even with screaming, tell-tale lab results that clearly stated otherwise. We had to drive over to Seattle to take her to a ped. GI dr. there who took one look at her lab work and pretty much diagnosed her at that moment. Ashlyn should not have to be suffering as she is- it truly breaks my heart. Fortunately she has an excellent team of doctors now, and although traveling across the state takes a lot out of her, it is worth it to know that she will be well taken care of. For now she has been placed on two medications, and we are awaiting the CTE results to see where we go next- if there is not a lot of disease present in her small intestine then the plan will more than likely just continue with these two meds. If there is disease found, well- frankly I don't want to think about it- one day at a time. I will deal with that if I need to.
She is still continuning all her nourishment via the ng tube. It's been months since she's eaten a meal. It is going to be a process to begin the eating food again, but we don't need to worry about that just yet as the drip feeds are a part of the short-term treatment. We'll tackle that bridge when we are all a little bit stronger. lol

I leave you with a layout today. I used a Sassy Lil' Sketch as well as a challenge from a wonderful new store/message board called My Scraps and More. You should go check it out! There are daily challenges which are sure to inspire you and get your mojo flowing.

Congrats Graduate layout

I didn't realize that it's been nearly a month since I have posted on here. I have tons of projects to share as well as some news about Ashlyn- but I will get into those later this week. For now just a layout.

I used the  April 21st sketch from Sassy Lil' Sketches as the basis for this layout. I obviously adapted it to fit my needs. I used some EAD Stickerz that I have had for nearly a year, as well as a mix of some papers that have also been sitting in my stash.

Thanks for stopping by. I hope you had a blessed Easter!

cards to share

Short and sweet today. I have several cards to share I made last week. Once again, there is yellow on them! Totally my new favorite color! :)

the first 2 feature MME.

(inside of bird card) used Echo Park Paper on the above.

Crate Paper.

Thanks for stopping by- have a beautiful week!