Welcome to Fall

I know you guys must be wondering. We’re still all okay here.  No H1N1 here.  Emily’s nurse has a yukky cold, but the rest of us are okay.  

A new nurse will come out today to do some orientation training.  Hopefully things will work out and we’ll be fully staffed by this time next week.  I’m glad I know how to care for Emily in the way she needs, but I do get tired at times. 

Emily’s been doing a lot of calling and crying at night the last few months.  I don’t get a lot of sleep (as with many of you out there who read this).  Emily has slept the last couple of days but she is in her room calling out as I type.  I think something is bothering her again…. hormones?  She is on Depo Provera to help regulate that.  It’s almost time for more.  She gets a shot every 3 months.

We had a Thanksgiving “trial run” last Saturday.  That’s just a fun way to say I cooked a turkey dinner and we invited a friend to eat with us.  It was delicious!

Plans for the next few weeks:

Hunker down and keep Emily home from school so she/we can stay as well as possible here.

Birthday tomorrow….  more on that after it happens!

Grace gets her braces off in November!  She’ll have to wear a retainer but all the metal in her mouth comes out.  Yippee!  Will she eat any better?  One can only hope.  Lately we’ve been trying to tame the candy monster here….

Thanks for listening ~

October Birthdays

Can you tell I’ve been underwhelmed at blogging?  Sorry. I know you guys wonder how we’ve been doing.

Grace had her birthday the weekend before.  Jeff had a birthday this week.  It was his 31st, no wait, his 7th, no, hummm….  how many candles was it?

Well, it was a lot of candles!  He must be pretty old.

He got a Garmin GPS thing for his bicycle.  He and Grace have been doing a lot of bicycle riding. 

Happy Birthday Jeff!

Emily had an excellent weekend.  She was so happy.  We took her on an outing to Costco on Sunday.  It was almost 2 hours after shopping.  She was very ready to get out of her chair when we got home.

On Monday Emily went to school and lots of kids were sick.  I decided not to send her back to school right now.  She can’t afford to get any of the illness that are going around, especially H1N1. 

Emily’s PIC line was giving us trouble on Wednesday so we had to go in to Infusion Clinic.  It was flushing but the nurse couldn’t draw any blood back.  There was a fibrin sheath over the end, so they said.  It acts like a flapper valve and flushes can go in but nothing can come out.  A clot busting drug was given to get rid of it.  We had to wait one hour after giving it.  Then it was flushed and checked again.  When everything was working fine we got to go home.  Emily was very ready to be home, just about growling because she needed to get out of her chair.  Her hips are good, but she still can’t sit for more than a couple of hours.

Yesterday Emily wasn’t feeling very well.  This morning she is still sleeping.  I am hoping she is just tired. 

Well, all for now.  Next week will bring more exciting things, and one more birthday!  Can you guess who is next?

Thanks for listening ~

All Pooped Out

Its finally cool here.  The wind was whipping up for a couple of days and there are branches and leaves all over.  So it really is fall.  I am enjoying the colors so much.  They seem really bright and beautiful this year.  Maybe that is because it hasn’t been raining non-stop like it does some years.  I’ll take some pictures to post in a  later note.

Emily had a barium enema test on Tuesday to see how her bowels were doing.  I can say that they are pretty slow.  She returned 1/3 while they were taking pictures of her bowels, and 1/3 in the middle of the night (4am), and 1/3 just before more pictures were taken in radiology the next day.  She’s having little bouts every few hours. I feel so sorry for her, her bunns are getting pretty sore. 

Now the surgeon will look at the results from pictures, and the radiologist notes, and let us know how her bowels are functioning.  We’ll probably have an appt with him again next week.  The advice given will likely be something I don’t want to hear, or make a decision on.  I’ll post another note about it after the next appointment.

On a nicer note, Emily is feeling better and she’s been happy this week (in between poop episodes). 

Please keep Emily in your prayers. 

Thanks for listening ~

52 Week Blessing Challenge – Birthdays!

Well, guess who had a birthday this last week…. Grace!

 

Nine candles on that chocolate chocolate cake.

Emily was so excited.  Aunt Tracey and Uncle Rueben came over, as did brothers Adam and Jered.

Tracey’s gift was wrapped in beads. 

The present was bracelets to decorate.

The orthodontist sent a birthday card with “ortho-bucks” in it.  Grace can trade ortho-bucks in for little presents.

Aunt Jackie made a beautiful card and sent $10.  Grace exclaimed, “I’m rich!”

 

Grandma gave Grace a purse that also had money in it. 

 

Grace enjoyed opening her presents.

Then she enjoyed putting together the 1000’s of pieces after the party was over.

We went outside for a bit and look who was in the pasture again!  They really like our pasture.  We had such a nice day, and were truly blessed to have Grace and all her wonderful birthdays.

Thanks for listening ~

What’s Cooking This Week

I’m getting mail again asking where we are and what we are doing.  I’ve been so bad about not keeping up! 

My craft this week has been apples.

Trish, our wonderful nurse went and picked apples for us.

So I’ve been peeling,

and cooking.  This was the second pot.  The first pot I cooked down to applesauce.  It turned out so YUMMY!  I store the cooked apples and applesauce in the freezer. 

Emily continues to have troubles and pain in her tummy.  Tests in the summer, after being hospitalized twice, showed that food moves very slowly through her system.   It got a little better after changing to another formula however now she’s having trouble with it again.  So on Tuesday she will have another test to see what is going on. 

The good news is the cyst that was on her right ovary is gone!  I am so thankful.  It was there for months, and continued to grow between the first two ultrasounds which were a month apart.  She had another ultrasound a couple of weeks ago and the Lord caused a miracle and now the cyst is gone! 

Grace has been up to her old tricks.  Last weekend the ADHD about drove me crazy.  Was it because I had a 2-day migraine or because she ate a whole “cheezy-bread” pizza by herself?  Her behavior lasted for a few days but by yesterday she seemed back to normal. So after a 3-day scissor-bender in which two afghans were turned into sleeping carpets for her Webkins (stuffed animals), and the mouse pad on her desk was turned into spaghetti (she just had to see what was inside the wrist support) I’ve hidden the scissors.

Thanks for sticking around, even when I am not good at posting new news.

And thanks for listening ~

A Good Night’s Rest

I forgot what it was like to sleep all night (well at least for 5 or 6 hours straight).  Something I like to do but haven’t had much of in the last couple of weeks.  Emily has been having a lot of pain and isn’t sleeping well.  Last night was the first night she had a regular sleep. 

She has another bladder infection and is still having bowel trouble with slow movement and some pain.  She had an appointment with the surgeon yesterday and we were pleasantly surprised to find that the cyst that has been on her left ovary for a few months is gone!  Talk about a miracle, wow! 

So for now we’ll let her rest and hopefully much of the pain will be gone once the bladder infection gets under control.  Thanks for all your prayers and well wishes.

And thanks for listening ~