by Sarah | Dec 20, 2010 | All About Kennedy, Crap, Cystic Fibrosis
Today was the dreaded day. The one that has stressed my nerves for over a month. The one where two of my kids were to meet with the pulmonologist.
One had to face more testing, more questions on whether or not the CF was something he would claim for his own.
One had to improve her faltering health or it was time to get out the big guns of IV antibiotics and a hospital stay.
Tomorrow I will go into what happened with Brandon. Tomorrow I will delve into that pool of hurry up and wait.
Today I’m eyeball deep in hospital stays and IV’s and PICC lines and WILL WE BE HOME FOR CHRISTMAS?
I have not cried yet. I was almost fully expecting this to happen. I’ve welled up a few times, but managed to keep them away. The afternoon was spent finding places for our other two children to take refuge so that we could focus on Angel. Scheduling who would be where and when and for how long and who would do better sleeping in the hospital and who would do better at home?
And how would we really be able to handle our little baby’s first ever hospital stay.
In essence, Angel’s lung functions were still very poor, very low. Without a bit of question the doc started making calls before she even came into our room. Angel was to be admitted. She would start with a peripheral IV, and have a PICC line inserted soon as possible. Knowing what day was fast approaching, the pulm said that we would try to get her discharged on Christmas Eve and let us do the PICC antibiotics at home…but since it’s our first ever hospital stay and our first time with a PICC there are no guarantees.
Angel has been holding up extremely well. She calls the hospital her “new home” and says she wants to stay here forever.
They do her treatments (Albuterol by nebulizer & chest compressions) four times a day. She has her vitals checked every four hours. The nurses all love her (really, who doesn’t?).
She has a nice lady that comes in (a sort of ‘morale’ nurse) and brings in an iPad full of games when she has major stuff done (like IV’s or blood work). She’s up much later than we let her stay at home, and there’s a cabinet full of movies for her to watch on her (private) room’s TV.
Angel…she’s on cloud 9.
Archie and I are in our own little hell. Trying to be the strong ones.
This was not how I’d planned for my holiday week to happen.
My family scattered, each child in another place…Archie & I having to schedule a basic avoidance of each other to avoid hospital parking fees.
One way or another we’ll be together for Christmas.
It’s the week leading up that’s nothing like I pictured it.
It makes me sad.
But through the sadness I have been so blessed. We DO have people to take the kids. Archie CAN take whatever time he needs off if he wants/needs to – even w/o PTO left (they’ll be working w/ HR to find a way to cover the hours). We have offers of help.
I have found that not only can my fabulous Indy bloggers throw an excellent party…
But they are there for you when things go south. It has been many years since I’ve had “real” friends – my closest friends have always been cyber and far from local (every bit as real to me…but not someone I can go drink have coffee with). But in my time of need, so many popped up with offers of help and support. (One in particular…Emily, you are a gem beyond belief.) My neighbor has offered support (thanks, lady. Won’t name you, but I know you’ll see this)…and so many others.
Of all the things that have threatened to break my no-tears streak, it is all of the amazing outpouring we’ve received.
In this time of stress…it’s wonderful to have blessings to focus on.
by Sarah | Dec 19, 2010 | Photography, Weekly Winners
All taken w/ Canon Rebel XTi.
For week 12/12-12/18/10
This weekend started the Christmas Crazy Cookie days. With the exception of the first pic, these were all taken on Saturday (more cookie pics next week where you can see the many many I made)
Taste of Home
Unless you’re down with the B’lo you don’t know the beauty and deliciousness of a “Beef on Weck”. I was feeling homesick so I attempted to make this Buffalo staple for the first time. It wasn’t perfect, but it was damn good…and I will be forced (the horrors!) to try again and again until I get it right…
Dusting the Surface
Star Shine
Waiting for Heat
Rolling
A Real Cutup
Ready to Nosh
See more of my photos over at my flickr account.
That’s all for this week. Head on over to Lotus‘ digs to see more!!
by Sarah | Dec 18, 2010 | Holidays
I have made a LOT of cookies in my 30+ years. I’ve tasted even more.
When it comes to cutouts, it’s tricky. Too much sugar and it’s just a sugar cookie – too little and they are way too dry.
I used to think my Mom’s were the best…but they always required a ton of frosting to counteract the dryness of the cookie (sorry, Mom) – I stopped making them when I got married and moved out. My aunt’s Christmas cookies, while good – were just never right either (and it’s been so long I can’t remember why).
I tried several recipes in the 8 years I’ve been married – and for the past 3 years I’ve stuck with these. I stumbled on the recipe when I was looking for Polish cookies – and that’s what these were called. BUT, the recipe called for Anise (*gag* *hurl* Blech)…and I was definitely not down with that. So I adapted the cookies to a flavor that was much better.
Let me tell you, this is the easiest dough I have ever worked with and the flavor, when done as I adapted it, is PHENOMENAL.
****
The Best Sugar Cutouts
1c. Butter
1c. Shortening
2c. Sugar
5 Large Eggs
7c. Flour
2Tbs. Baking Powder
1/2tsp. Salt
1/2oz. Almond Extract (original recipe called for Anise, this substitution makes deliciousness)
- Cream the Butter, Sugar and Shortening until smooth and fluffy
- Stir in the eggs one at a time until incorporated
- Add almond
- Mix in the first 6 cups of flour
- From here it’s by sight/feel. Add in flour until you get a moist batter. It should seem too sticky to roll, but solid enough to hold together.
- Chill the dough for at least 2 hours. Preferably overnight.
- Once thoroughly chilled, the dough is a dream to work with. Take off a handful and put the remainder back in the fridge while you roll it out for cutting.
- Place a hunk on a floured surface and roll out for cutting (about 1/8″ thick).
- Bake for 12-15 minutes in a 350* oven.
- Frost with frosting of your choice. I love a good buttercream w/ a touch of corn syrup for shine.
- Decorate all out for your holiday fun (and for Santa’s plate).
And that’s it! The strong almond flavor gives and added touch of yum. The cookies are moist enough that you could eat them plain…but really, who wants to? Frosting is 98% of why we eat the cookies, after all…right?
I hope you enjoy them if you try them. My search for the perfect cutout has finally come to a sweet and delicious end!!
by Sarah | Dec 17, 2010 | All of Us, Holidays
In case you didn’t already know it…we are amongst the “have-nots”.
That being said, we have plenty. We have a roof over our heads, we have food on the table, clothes on our backs.
What we don’t have a lot of is “extra” money. At the moment we only have one running vehicle because one broke down and we can’t afford to fix, much less replace it.
We don’t spoil our kids, they hear a lot of “No’s”. At Christmas we try to make up for a year of no’s with a decent amount of presents…definitely not a LOT. Even this year when I have started buying presents back in JUNE in preparation of not having the dreaded empty bank account at the end of the year – and was rewarded with the unusual capability to buy gifts for each other for a change.
***
Amidst all the holiday preparations I’ve been shocked by the sudden sense of entitlement about it all.
Riley’s can almost all be explained away by her behavioral issues and the influx of propaganda from school. She is filled with anxious anticipation and impatience. The “now now now” wears down my patience and my nerves.
Brandon is the one that shocks me most. In the past weeks his grades have slipped and he’s completely ignored homework. He flipped out when we didn’t fix his computer (an old, run down, way out of date computer) IMMEDIATELY. Everything he did had to be done NOW. Even now with his cast off and a brace on he excuses his way out of everything. If he’s been asked to do anything, it’s not been done.
Angel is, as always, the most easy going. She is excited for the holidays, for the presents, but is mostly tolerable.
***
It leaves us wondering if we did something wrong. By making Christmas a big deal, even when we have little, did we give them the sense of entitlement? Did we make it too commercial? Is there something we can do to correct it?
by Sarah | Dec 15, 2010 | All About Me, Holidays
I have a really bad habit.
I believe I’m Super Woman. I can do EVERYTHING.
Then when it all fails, or life gets in the way (like I forget it has a tendency to do), I crash hard, hate myself a while and wallow in ick.
Two months ago I was ready.
For Christmas.
I’d started to pre-set everything for Christmas. Most of the shopping was done. I’d pre-made cookie (batter) so that baking wouldn’t take any time.
I was sooo good to go.
So I took on a few (dozen) extra projects.
Then life fell apart.
Everyone in the house got sick (including ME twice – and I don’t get sick), had disastrous doctor’s appointments, or decided to stop eating. Our car died. The eldest’s grades went from straight A’s to WTF? Chaos erupted and everything fell apart.
I was still determined to do it all.
Then this morning ONE.LAST.THING. happened. I snapped. Burst into tears on my poor Archie (who was just trying to leave for work and made the mistake of asking if I was okay). I realized I’m exhausted. I’ve been staying up until 3AM every day trying to get it done, and waking up at 5AM to continue getting it all done. It was too much.
So I’ve decided to focus on my family. The other stuff will work out and get done in time.
Now is supposed to be the time for peace. I don’t know what’s going to happen next week, so I’m going to get MY family’s stuff done this weekend…and if nothing comes out of the doctor appointments I will have lots of free time to relax and enjoy the holiday. If we end up with a hospital admission, everything is done and I have no need to panic.
One of these days I’ll learn to leave behind my Super Woman syndrome…I hope it’s sooner rather than later. I don’t want to feel like I have today again for a long time.
by Sarah | Dec 13, 2010 | All About Denver, All About Kennedy, Crap, Cystic Fibrosis
Sometimes it’s easy to ignore it all. To push aside the stress, the fear, the worry.
“The appointment is a month away,” you tell yourself. You think there’s no point in stressing now.
After all there’s not a damn thing you can do.
And things go smooth. You almost forget.
Then the moment happens.
Out of the blue you remember what you tried to forget. A reminder phone call for an appointment. A simple glance at the calendar.
And all the fear and stress you’ve shoved aside checks you into the boards rougher than any hockey player.
***
One week from today there are two big doctor’s appointments. Both on the same day. Both with the same doctor.
**
Angel will have her functions checked again. If she doesn’t bring her numbers up, our Christmas may be spent in the hospital. We will also be discussing having a full genotype run on her to determine her exact CF gene combo (as the original bloodwork did not turn up her genomes in the ‘standard’ for CF).
**
Brandon is also meeting the pulmonologist for the first time. He will have another sweat chloride test run (if Angel’s evolution is any indication 2+ tests = diagnosis). He will have blood work run (possibly a genotype for him as well). The doc will discuss his history and determine what other testing he needs.
**
I don’t know what’s going to happen.
I try to focus instead on keeping insanely busy for the holidays.
Then it hits.
One week from this minute I may have 2 CF kids instead of 1.
Or not.
I may be trying to figure out if the genotypes will be covered by insurance and if not, how to afford them.
There’s a lot of unknowns. I hate unknowns.
I don’t know how to help a grown child that’s always been healthy come to grips with a CF diagnosis.
Angel, well, she’s growing up with it…it’s already normal for her. Brandon grew up without major issues.
I don’t want to jump the gun…
But I can’t erase the fear.
Today was the dreaded day. The one that has stressed my nerves for over a month. The one where two of my kids were to meet with the pulmonologist.
In essence, Angel’s lung functions were still very poor, very low. Without a bit of question the doc started making calls before she even came into our room. Angel was to be admitted. She would start with a peripheral IV, and have a PICC line inserted soon as possible. Knowing what day was fast approaching, the pulm said that we would try to get her discharged on Christmas Eve and let us do the PICC antibiotics at home…but since it’s our first ever hospital stay and our first time with a PICC there are no guarantees.
They do her treatments (Albuterol by nebulizer & chest compressions) four times a day. She has her vitals checked every four hours. The nurses all love her (really, who doesn’t?).
Angel…she’s on cloud 9.
