Thankful for our Nurse

The weekend was good and Emily is still off the oxygen. She started new seizure medicine, Banzel, on Saturday. We're praying that it will help. This morning she had a seizure first thing. It wasn't as difficult as some of them are, but it lasted just as long. I can hear the oxcymeter going off... The nurse is here today and so I can relax and let her do the tending.

It was difficult, at first, to let a nurse come into my home and help me with Emily. Trust is a huge issue. There are nurses, and then there are Nurses. We've had a few very good nurses in the last 4 years, and a handful of very, humm, what's the word for nurses that just don't have a clue? Yes folks, they are out there. Maybe they got through the bookwork and got a license, but it takes someone special to understand the caregiving needs of a fragile child. There doesn't seem to be very many of them out there, OR they all work for the employers who can pay the highest wages (which isn't a home care agency or Medicaid client).

I have to say though that I am SO very thankful for our nurse. Even with part-time care this person takes the pressure off of me, at least for a while, and helps our family keep some semblance of normalcy. I'm not sure when "Be thankful for your nurse day" is, but I shall look it up and make sure our nurse gets a nice Thank-you card that day. If there's not a special day for nurses, I'll make one up.

In like a Lion, Out like a…. Lion?

We were looking for some of this:

And some of this:

Instead we got this:

Last night

And some of this:

This morning

So we’ll sit by this:

And do this:

and have this:

Thanks for the breakfast honey!

Yes, I made Rolls!

Emily is finally off the oxygen! She used it during the night last night but was able to be off all afternoon yesterday. I’m thinking today she’ll be off all day. Emily has a neurology appointment today. We’ll be talking about the welty rash that appears with the seizures. We’ll also discuss the new seizure drug Banzel (rufinamide).

Its been a busy week so far. I made Biscuits. Yes, that’s right! For those of you who know me know that I don’t like to cook. I just had a hankering for flakey little biscuits and gravy for breakfast. The first batch I made (from scratch no less) turned out like hard little rocks. They were soft inside, but not much to look at. The second batch I made, to go with the roast dinner, I made with a box pancake mix. Those turned out great.

I also finished two tatted bookmarks. One for Tia and one for April, both of them guessed at questions I posted.

I also worked with Grace this week on learning to do her laundry. She is not quite tall enough to empty the washer, but she can put her clothes into the washer.

Yesterday Grace went to visit her orthodontist and was given “chains” on her top teeth. This is to pull her front teeth together. She chose the color. Isn’t it pretty?

We’ve also had a little spring arrive here in our neck of the woods.

Happy Spring!

Spring - A little dab will do ya!

Spring has sprung! Yippee! We saw some sun on Saturday. Small portions are good, but I'm praying for more...... Here is a link to spring. Just click your mouse over the black page and watch what grows.

Ok, for those of you who are following the beehive hair-do contest, the prize goes to Tia, who answered the question within 1 year. Yes, I entered 7th grade in 1970. I put my white lipstick (and my blue eye shadow) in my purse and applied it after I got to school as my mom wouldn't let me wear it at that age. She turned out to be a good mom anyway!

I'll upload pictures of the tatted bookmarks in my next post and Tia will be able to choose the one she wants.

Emily's had a rough on-again, off-again weekend. Friday she seemed like she was doing better. Saturday she was having a rough time with gunk in her chest. Yesterday she seemed to be over what ever was bothering her Saturday, and today she is really looking YUKKY. Her respiratory issues seem to be improving, however the flu is going around and she looks sick. Her lips are white and she is lethargic. We've been working with "Yes" and "NO" cards so we can understand her answers. She just doesn't feel good but can't pinpoint what it is. Hummm.

Please keep praying.

Saint Paddy's Day

Grace made this picture in school yesterday. It says "I'm lucky because I found a four-leaf clover and the best mom ever."

Out of all of you who follow this post only 2 people guessed at my questions! The answers will be accepted for another day, but if there are no more answers then Tia and April will win a tatted bookmark! Yippee!

Emily had a better day yesterday. In the morning we were able to turn her oxygen down to 1 liter and then in the afternoon she was able to go down to 1/2 a liter. I'm so thankful for all of your prayers. She has an appointment with the pediatrician tomorrow and I think she'll be well enough to go!


I heard back from the Neurology office. We had to cancel the appointment on Monday due to her illness. They set another appointment for next week. I asked about the new seizure drug Banzel. I'm hoping this is a medication that Emily will be able to try. I'm hoping it works better to keep the seizures at bay.


Yesterday I got out the serger and made Emily a bed jacket. (she's wearing it in the picture) I'm not that great a seamstress. I finished it, looks okay, but nothing I would shout about. I'm not very excited by sewing, I'd rather be weaving, or doing needlework. But I have a huge bag of material, donated by one of our nurses. So I figured that I should use some of it up and not let it just sit around. The bed jacket is for night time when Emily accidently pushes her blankets off. She can't pull them back up. So I made a little jacket with an opening in the back. The sleeves are long and she just wears it over her arms and chest. The material is a very soft fleece. Nice to cuddle with.

Once the jacket was completed I decided I should get to the numerous items that have been sitting waiting for repair. After all, how difficult is a repair job? I was so tired that I just couldn't figure out how to thread the surger for the hem stitch. I tried and tired and it wasn't catching the looper. I looked on internet, youtube, couldn't find a demo for my machine. So I tried and tired again. I cooked dinner, and then went back to it. Finally I figured out that I had the needles in the wrong position for that particular stitch! UGGG, very irritating for me. That's why I don't sew. It it's not plain and simple, forget it. Got the items mended and all is well.

The hem stitch repair

Now, I'm thinking about hemming 3 pair of jeans with my serger. Any suggestions on what to do or not do as the case may be?

Pictures to Guess By

Here's the promised pictures of the new "do". Boy is it easy to fix in the morning. The cat loves the smell of the hair spray. He won't leave my hair alone....

While I was getting my hair cut I was thinking about the days when I used to rat my hair up in a bee-hive and wear white lipstick! I was in 7th & 8th grade. Boy, that was a while ago!

I'll give one of my homemade tatted bookmarks to the First person who can correctly guess what year I entered 7th grade. My immediate family is disqualified since they will know what year it was (April's girls can enter if they want to).

For those in my family, if you want a tatted bookmark you'll have to guess the answer to a different question. Here's your question.... Can you guess something stupid I did with my ice tea while at a restaurant, which Grace will never let me forget?

Happy guessing!

Emily update

Yesterday started out good and I got Emily's long thick hair washed.

However as I was brushing the tangles out she had the first of two seizures which would shape the rest of the day. When Emily has a seizure she usually sleeps for hours after. And with Valium on board, and her not breathing well I had to increased her oxygen again. At bedtime the second seizure was long, about 30 minutes. She slept but cried out off and on during the night.

This morning our nurse arrived and Emily was happy to see her. Emily was happy today and even looked like she was improving.... until she went to sleep. She really had a difficult time with secretions and needing to cough this afternoon. Last night I found out that Emily's oxygen concentrator (a machine instead of a cylinder of oxygen) wasn't really working correctly so had to be exchanged today. I was hoping maybe that was why Emily wasn't doing well, but even after the new concentrator was plugged in her breathing was labored. Please continue to pray for her.

Two days without a nurse and I was ready to get out of the house today. My big field trip on my free days is usually to the grocery store. But I decided that I needed to do something for myself before collecting groceries so I went to the beauty parlor and got a hair cut and style. Now I look a lot like my sister April.
:)
Maybe next week I'll get a perm. I'm tired of flat thin hair (a family trait). Pictures in a future post.

Doing better!

Emily is doing better this morning, she is down to 2 liters of oxygen (from 3). Thank you to all who prayed!


Was snowing early this morning. Looked pretty but now its a rain mix.


Grace came stomping down the stairs and even though she was smiling she just couldn't control her voice or her attitude and she is now standing in the corner.....

Springtime Illness

Emily had a fairly good week only to end up being very ill last night and today. She is on oxygen and begs to have her next breathing treatment. She started on steroids today but if she doesn't improve by tomorrow I'll have to take her to the hospital. Tonight promises to be a long one. Please pray for her.

Emily has a neurology appointment on Monday. Would be nice if she was well enough to go. We need to talk to her neurologist about the seizures (and the rash that she gets during a seziure) and a new drug treatment that I just heard about (Banzel).

View from my livingroom window.

Its raining outside and our miniature little daffodils are coming up. There's talk of some wet snow this weekend. I don't mind, lets just get it done and over with, I'm ready for spring. Grace has been having a little more trouble with the hyperactivity this last week. I'm wondering if she just needs a good long play outside. Couldn't hurt.

The state capitol in Olympia Washington
(I took this picture when I was in Olympia. I can almost see the clouds moving!)

I have a new article posted on Complex Child E-Magazine. The article is about effecting change at the government level. The follow up to this article is that I went to our state capitol and spoke with my representatives. A bill was introduced but unfortunately it was set aside because there is no money to carry out the bill should it pass. However, the good news is that the bill will have to be considered in the future. This is the way bills are processed, if not now, then it will be heard later. Here is the image of the poster I made for my representatives at the state capitol.

Emily was not feeling very well this week. However she enjoyed her nurse Trish, a bright spot for her (as well as for us!).

Grace was ill this week also. Whooping cough is going around. Grace is coughing, but I think its only a cold, she isn't having whooping cough signs. Grace loves school and it was not fun for her to have to stay home. She enjoys being with me, but I'm just not as fun as school I guess. We finished that horrid puzzle. It was awful. All the pieces looked the same and there were only 2 cuts on the pieces, one way or another. That was the most difficult puzzle I've ever worked. Jered gave me a Winnie the Pooh puzzle for my birthday. We've started that now and Grace has been busy at putting the Pooh gang together.

Our new little guy wasn't eating very well this week and we were worried he was sick. I think he was just waiting for us to feed him our food..... too bad little kitty, you eat cat food.



I'm really enjoying tatting. Needle tatting is so easy. Here is a picture of my recent creation.

Bookmarks are quick and easy so now I think I'd like to try a baby bonnet. If it turns out I'll post a picture of it.

Headstands and Tatting (not at the same time!)

Emily has been feeling a little off this week. She was sick off and on last week with a cold. This week she is plagued by more womanly issues.


Emily had an appointment with the orthopedic doc last week who told us he had no idea why her hip would still be painful 11 months after her hip surgery. It appears that her femurs are up next to her pelvic bones, just as the head of the femur was. I don't think it is rubbing but the right hip continues to bother her. However, the pain is not so bad that it inhibits her from sitting in her chair. She seems to sit well. This was a constant issue last year before the surgery.


Grace has been so energetic lately. Must be spring in the air, literally.... One morning last week she came down the stairs and nearly knocked me over, rushing past me in the hall. I asked where she was going in such a hurry and she said, "I have to go do a headstand!" HA! Her newest trick. She's been practicing headstands every day for the last week or so.


Its already been a week since my mother came to visit with us. Every February there is a sewing fair close by so my sister and my mom and I usually attend together. At the sewing fair I saw a lady working on needle tatting. I am one who likes to work on lace projects. I have tried crochet lace, and made quite a bit of bobbin lace in the past. But when I tried tatting I could never get the shuttle to do what I wanted. So this lady was working her tatting with a needle. I stood and watched her and convinced myself that I could do that. So I went home and tried it. This is what I've come up with.

First Tatted Bookmark

Second Tatted Bookmark and then a Tatted Heart