On the frame and off

Blogging has taken a back seat the last few weeks. Perhaps I should explain. Our oldest granddaughter was born with a brain tumor called a hypothalamic hamartoma. Her tumor was 1-1/2 inches in diameter. While this is classified as ‘benign’ — it’s effects are not benign. It causes gelastic and dacrystic seizures, both of which can progress to more serious complex and tonic clonic seizures over time. For many children, these seizures – although lasting only seconds sometimes – can occur up to hundreds of times in a day. This inability to focus will eventually cause cognitive delay. For our granddaughter, the seizures are very brief lasting only seconds and occur 40-60 times per day. The majority of her seizures are the dacrystic type which cause crying and sadness. She does still have gelastic or laughing seizures too. She was four years old in December and has already had three brain surgeries which have resulted in the removal of all but a few remnants of the tumor. And now, the time will soon be here for a fourth surgery to remove those remnants. That has been on my mind, and although I’ve been quilting, it’s hard to write about anything.

She’s a very sweet and happy little girl except during these brief episodes when the sadness overtakes her. Lately, when there’s a lot going on around her and things get noisy, whether it’s her preschool classroom or at home, she will announce, “Inside voices, please.” Other times she will tell us, “I’m not all right.” We hope you’ll keep her in your thoughts and prayers. The surgery will be in May, near the end of school. The photo below was taken in January when she was clowning around with the glasses from her doctor’s kit.

Ezri 01-2011

You can find more information about this disorder at http://www.hopeforhh.org and also about Ezri by following the Caring Bridge link in the right column. 
 

Phoenix update

I’m in Phoenix with Katherine, Ben, and Ezri. We feel that we got good news from Dr. Rekate yesterday. Not sure what the treatment will be–decisions have to be made soon. Here’s a link to Katherine’s notes on the Caring Bridge website.

Ezri’s Story 
 

Long Distance Quilting

I took a trip to my Mom’s this week. Most of our quilting is done long distance and it is not easy to quilt that way. We keep UPS in business, and they have great service. If my package gets to the UPS depot in the late afternoon, Mother gets it the next morning. It leaves Chapel Hill that night and makes it to Greensboro by 2am. UPS ground gets it on the truck to Shelby, and out for delivery the next morning.

One of the issues that we deal with in long distance quilting is that Mother doesn’t have a computer. Three times, we tried computers with her for email, but it was very frustrating for her. Since her stroke, some parts of her brain just don’t work normally. She has real trouble communicating numbers and the names of many things, although she knows exactly what she wants to say. And using a computer is the same way. My final solution for email was an HP service: http://www.presto.com which is an HP printer at her home that receives and prints email.  There is no way for her to email back, but at least she can receive text and picture messages. Even though verbal communication is difficult, she reads and understands everything.

I bought her an Accuquilt GO cutter for Mother’s Day. She hasn’t used it yet, but it will certainly get used. She has an incredible stash which hasn’t been touched in three years.  Her primary caregiver is going to help her explore her stash to find fabric for her next project. I would love to do this with her, but there is never enough time in a visit; and she can make this kind of decision if someone helps her overcome the physical limitations.

I had given her a Moda Butterfly Fling jelly roll before I even got my first Accuquilt GO. She has finally stitched it together, and we are making a Strip Twist quilt from Quiltville.com with it. The strips Mother had stitched came home with me. Yesterday I pressed and cut them into triangles according to the instructions. I used a tiny bead of Elmer’s School glue to baste the triangles together and pressed it dry. I packaged them up, and she should have them first thing Monday morning. Once they’re stitched, I’ll try to make a trip back. She likes to make blocks but even more, she wants to put the blocks together to make the top. I can help her with that by trimming the blocks to size and then glue basting them into rows for her. She will enjoy laying them out so she can decide where each block goes in the quilt layout.

The Strip Twist quilt is one of my favorites. I have made it at least a dozen times for charity quilts and made it into a baby quilt using the Butterfly Fling jelly roll. It is also a great pattern for using your 2 1/2 inch strip die with your Accuquilt GO.

I’m glad to be home. I plan to be back to my quilt a week instructions by Monday. Hope you have a Happy Quilting weekend! 
 

Brick Four-Patch Scrap Quilt

Over the weekend, I worked on instructions for another quilt that uses the 3 1/2″ x 6 1/2″ brick Accuquilt die. This one also uses the 3 1/2″ strip die. I have seen this quilt done lots of times and it is a very pretty quilt. It could also be done using the 2 1/2″ strip die and width of fabric precuts that are 4 1/2″ wide to be fanfolded across the 2 1/2″ strip die to make bricks.

Here’s a picture from EQ7 showing the quilt. Click the quilt image for a link to the instructions. Also note that I have been making my instructions in EQ6/EQ7. In the software, I go to Layer 2 and write the instructions using the text tool. Then I move the text box above or below the quilt so that it does not cover up the quilt image. The text becomes a part of the quilt image. I can then print a photo of the quilt to an adobe file, and I have both image and instructions in one and it’s all on one page!

Brick Four Patch Scrap Quilt

On other fronts, we’re still struggling with what to do for Ezriel and the remnants of her brain tumor. After three surgeries, the little pieces that are left are literally threads. It is complicated though because the strands can be seen on MRI, but the surgeons say that during surgery the strands are indistinguishable from healthy tissue. Thus, it is hard to delineate exactly where to cut to completely remove them. In addition, these strands are beside the optic nerve. Meanwhile, Ezri is having as many as 70 or more dacrystic and absence seizures daily. Her mom increased her antiseizure meds late last week and she seemed to be doing a little better when we saw her this weekend. However, the doctors at Barrow Neurological Institute are scheduling a series of appointments to include consultations with the gamma knife team as well as the pediatric microvascular surgeons. As always, your prayers and kind wishes are appreciated. 
 

Baby quilt finished

I finished quilting a baby quilt this weekend for a friend who is expecting a niece in July. The baby shower is this coming weekend. The quilting is flowers (pictures below). The quiltmaker chose yellow fleece for the backing. I debated quite awhile before deciding to use Request weight Dream cotton batting. The other option I considered was a flannel. I looked at flannel at Thimble Pleasures; they had an incredible selection of the most beautiful and thick, soft flannel. The request weight Dream cotton turned out to be a very comfortable weight after quilting. The reason I debated so is because I had made one for my Mom with a fleece backing that turned out to be  just a little too heavy – although I use it every time I make an overnight visit to her house. So, I was fairly pleased with the way the baby quilt turned out. I would have quilted with less echoing around the flowers if I were doing it again – but I have those “I wish I had. . .” thoughts after every quilt I finish. I guess every one is a learning experience.

I watched a video from my friend Nichole Webb this weekend. She is such an incredible quilter. Here’s a clip she put on youtube.

I’m baby-sitting all week this week, so will put off my trip to Mother’s for another week. Ezri has her monthly injection at the hospital this morning. That always takes at least half a day. Now that she’s in pre-school, her appointment is later in the morning so she doesn’t miss as much school. That means Kes naps at my house – or NOT! One never knows whether she’s going to nap or not. Thursday Ezri has an appointment with a neurosurgeon in Charlotte, and Friday is an all day video EEG at Duke. She is certainly a sweet little girl to put up with all the poking and prodding and electrode glue.

Here are photos of the finished baby quilt, and I’m off to work on Norma’s oak leaves that I took off the frame to finish the baby quilt:

[book id=’16’ /] 
 

Mother’s birthday and a special gift

Got back late yesterday from visiting my Mother and celebrating her 84th birthday. Enjoyed some wonderful Cleveland County BBQ at Red Bridges BBQ restaurant on NC Highway 74 – BBQ, hushpuppies, and red slaw – there’s nothing better. I gave my Mother an Accuquilt GO! cutter so she can cut her own quilts. Actually, since her stroke she doesn’t have the strength to cut, but this will allow her to direct her caregivers to do the cutting for her. She will be able to place the fabric on the die and tell them how and what she wants cut. She is still sewing quilt pieces together quite well, so I’m excited that this will give her more creative freedom than having someone 200 miles away cutting pieces for her. It will also allow her to use her fabric stash (and not mine) for her quilts – LOL!

A real bonus of this is that one of Mother’s caregivers is an accomplished seamstress, but has never made quilts. It was very apparent that she was excited about learning to quilt.

A special treat was waiting when I got home. there was a package with two beautiful dresses for Ezri and Kes from my brother Al and his wife, Sandy.

Dresses from Al and Sandy
 
 

Goodbye and Hello!

A reception was held yesterday for my retirement from the Clinical Research Center at UNC. It was a wonderful party, and I am sad to be leaving but excited about the opportunities that it will create. I felt humbled by the kind and generous comments about my work and grateful to everyone who worked so hard to make the event a success. Who would have expected a cake with one of my own quilting designs on it? And what a surprise to see all of the former Program Directors and to have them speak about what we accomplished together over the years. The very funny farewell video was so professional and funny.  Here are some images from the party, and I’ll have more after another dinner tonight.

 
 

Backpack for a little girl



Made a cute backpack for Ezri today. Have had this idea for awhile. There’s a great free pattern for a tote bag on the Lazy Girls Design blog. I just changed the straps around to make it into a backpack. Here are some pictures.  Here are more detailed pictures in a pdf file: childs-backpack1 

 

 

 

Bag showing configuration of straps for backpack.
Bag showing configuration of straps for backpack.

 

 

Bag showing both straps attached and bottom of bag boxed.
Bag showing both straps attached and bottom of bag boxed.

 

 

A cute little girl and her backpack.
A cute little girl and her backpack.
 
 

Happy New Year – mid-January

Somehow, I am just now beginning to feel as if life is getting back to normal after a year and a half of worry about Ezriel and her HH. In the meantime three other grandchildren have been born. 

I am just beginning to re-learn my machine after having it retrofitted with a stitch regulator. My first attempts were actually worse than non-stitch regulated. 

But the best news of all–Ezri has decided to talk. She is naming everything and seems to finally be able to say anything she wants. And all this just days after being evaluated as being delayed in her speech. 

Am in Cincy with the twins–will post pictures when I have some.