Pennsylvania

My family and I are just back from a trip to Pennsylvania, where I knit quite a bit, we visited with Day's (that'd be my husband) family, and visited an eye specialist in Philadelphia, at the Scheie Eye Institute Center for Hereditary Retinal Degenerations.  Our family and friends have wanted more details about this doctor visit, and now that we have filled in the closest family, I thought I would provide some information here for those who are interested.  If you aren't interested in that, skip this post and know that we'll get back to the yarny things soon.  

A little backstory: Day was born with a hereditary condition called Retinitis Pigmentosa (RP).  His RP was diagnosed when he was about 14 years old, when he began to have vision trouble in low light situations.  At the time of his diagnosis, he was told that he had X-Linked RP, and often the progression of this disease leads to complete blindness by age 40.  Over the years, Day has participated in several scientific studies that have aimed to slow the progression of the disease.  We believe that this research and his participation in these studies has led to a slower progression, where at nearly 45, he still has useful eye sight, though some situations and environments are particularly challenging.  

Several years ago, Day discovered that researchers were working on gene therapies for specific genetic defects related to RP, and found that that most common form of X-linked RP was related to a gene called RPGR (or RP3).  Day researched and found the Carver Laboratory who could test his blood and determine what gene was causing his RP.   The results of this testing were promising, because it was confirmed that he had a common form (RPGR with the ORF15 exon).  We both felt that this was good news, because it would seem that the most common forms of the disease would be the focus of the first treatments.  

After that information, Day began reading abstracts and gaining information about what sort of research was showing promise.  Through a somewhat convoluted process, he was put in touch with Dr. Jacobson and the research team at the Scheie Eye Institute.  He has been emailing back and forth with Dr. Jacobson and Sharon, the genetic counselor, for a couple of years now, and was told that when they were closer to a human trial, they would contact him to schedule an appointment.  (In order to be considered as a candidate for participation in clinical trials, Day needed to be assessed by Dr. Jacobson and his team.)  

While waiting for that scheduling call, Day followed the studies that precede a human trial for a new therapy, and knew that they were in their second animal test, and that the results coming from a study on dogs were encouraging.  Day also researched the necessary steps to getting to a human trial, and discovered that two animal models needed to  be completed, funding for future studies needed to be secured, safety data needed to be collected and protocols needed to be written, then there would be a meeting with the FDA to determine if approval could be granted.  

So, we were called to schedule an appointment in February, and we made plans to go to Philadelphia as soon as we could. We were told to plan to be at the facility from 8:30 AM until 6:00PM, so we prepared for a long day.  We expected that the testing would be similar to the testing he had done at previous research studies: visual field testing, testing of night vision, color vision, and an ERG.  The tests involve heavy dilation of the eyes, so someone needed to stay with the him, helping with getting around, gathering food and whatever else may help, and that was my role in the day.  

The process began with determining Day's current eyeglass prescription, and other activities typical of a standard Ophthalmology visit.  Then we went upstairs to the research area, and they tested color vision, and Day began clicking buttons to let them know what he could see.  

Dr. Jacobson and his crew had discussed the characteristics of an ideal study patient, and had determined that, at least at this point, their ideal candidate would have "large swaths of peripheral vision" that could be treated with the therapy.  

The large gray section on this visual field result shows the sort of vision at the periphery that the researchers are looking for.  (This is not Day's result, but just used for demonstration.)

The large gray section on this visual field result shows the sort of vision at the periphery that the researchers are looking for.  (This is not Day's result, but just used for demonstration.)

At some point in the day, it was determined that Day had these large swaths of peripheral vision, so Dr. Jacobson looked at the preliminary tests and altered the tests that were planned for Day to include further testing of his visual field.  This was done to ensure that he was a good candidate for future trials, and to minimize our need to return to Philadelphia for more testing.  

The Perimeter where Day's vision was tested for about 9 hours.

The Perimeter where Day's vision was tested for about 9 hours.

So, from this point on, Day was completing a Goldman Visual Field Test, which you may be familiar with if you've been tested for Glaucoma.  They tested both eyes, in both light and dark adapted situations.  The tests took about 9 hours, according to Day.  (I was in the waiting room visiting with the family of another patient, knitting and listening to podcasts.)  

At the end of this testing (about 9:30 PM), the test administrators Rebecca and David went and met with Dr. Jacobson, and discussed what they had found.  Then Dr. Jacobson came and met with Day, looked at his eyes, and then brought me into the room.  

Together, we talked about how Day could best use the vision that he still has, what nutrients and supplements may be useful to strengthen his eyes, and finally, the fact that Day was, at this point, a prime candidate for the research they are planning.  Dr. Jacobson described himself and Dr. Cideciyan as people who don't get extremely excited by the research they see very often, and he said they were very hopeful and encouraged by the canine studies that are occurring now.  At about 11:00PM, we finished meeting with Dr. Jacobson, left the facility, and drove back to Allentown to meet back up with Ethan who had stayed with the family there.

Now that we are back home, we are sort of in a waiting game.  Dr. Jacobson had some advice for how Day could make the most of his vision, so we will be trying out his ideas.  We are working on adding Lutien to Day's diet (actually we were already doing most of that anyway, so this is just adding a supplement), and continuing his high doses of Vitamin A Palmitate, and we are waiting for a call that says that the time has come for the treatment.  We were told to expect to hear from them when they are ready to begin a trial, and thanks to Day's dedication to keeping up with the research, we should be able to see the progress as time passes.

When that call comes, Day will have a choice to make of whether to take the treatment or not.  The treatment will be injecting the gene therapy into the sections of his retina where the vision in those peripheral ranges was strongest.  It will be intended to stop the progression of the disease in those areas.  At this point, Dr. Jacobson is not planning to treat the central vision areas, for complicated reasons, but that may become an option in the future, or something else could help with that down the road.  There is obviously some risk with a clinical trial, so the doctors are trying to balance risk with opportunity to provide the most useful amount of vision for the longest period of time.  

Despite the fact that it was a very long day, it was extremely encouraging.  The faculty and staff of the Center for Hereditary Retinal Degenerations were extremely kind, considerate, and helpful, not to mention dedicated to helping people facing blindness.  Meeting with the head of the research program until 11:00 at night, researchers who continuously offered to help us in any way they could throughout the day and evening, getting the news we had hoped for, and finding that an answer was potentially close made this long day feel very good.  


I know this post has become rather lengthy, but I was so impressed by the people I met at the Scheie Eye Institute that I feel like I have to say more. 

While we were waiting, we met a family who has a son with a different condition.  His vision is at least as diminished as Day's vision, except that he is 16, not 44.  I didn't ask to share their story, so I won't say more than I've already said, but if you remember the things your were considering at 16-17 years old, and imagine making those decisions with blindness factored in, you can begin to understand what they are facing.  Add to that the fact that they were told that they are at least 5 years from a treatment, and you'll begin to understand how incredibly fortunate our family feels.

The study that Day is interested in is now funded by a pharmaceutical company (which is actually making it possible to move forward at all), but one thing preventing further research is money.  I wasn't asked to do this, and money was not mentioned to us while we were there, but if this post, or the thought of the family we met there compels you to give financially, you can do so at either of the following places:

This Kid Can KNIT

I have been hoping for several years now that Ethan, my almost seven year old son, would decide that he would want to learn to knit, and the day finally came!

Mar915-4.jpg

Despite my hopes and wishes, I decided to just keep knitting in front of him, supply him with plenty of beautifully knit items, and wait until he approached me.  Every once in a while, I would mention that if a child can read, they can probably also learn to knit, and he has considered himself an excellent reader for about a year now (and he is an excellent reader).  I was hoping that the thought of knitting was rattling around in his head, just waiting for an opportunity.  

So, on March 18, 2015, we were on our return trip home from Pennsylvania (more on the trip later), he asked me to teach him to knit.  We were in an airplane, flying somewhere over the southeast United States, and I had two projects in my purse.  One was a fingering weight Brioche shawl, and the other was a fingering weight Hitchhiker.  I don't believe that putting off the knitting urge is a good idea, so I let him have a go at the Hitchhiker shawl. I let him work his knit stitches after I had completed the first few stitches of a row and knit until the last few stitches, where there is another little bit of more complicated knitting.  (Not really complicated, but not first hour knitting for a not-quite seven year old.)

He took to it like a champ.  I heard him say things like, "This knitting is really fun!" He also declared that he "wouldn't have to be bored again."  

I mentioned that when we were home, I would get him out some more appropriate (solid, light color and slightly heavier weight) yarn, and his own needles from my stash, so that he could practice some more.  He didn't think that would work.  He actually decided that a proper knitter needed to have their own tools, fresh from an LYS.  I pondered that thought, and decided that he was probably right.  New needles and yarn you chose yourself would probably make him a happier knitter, and happier knitters keep knitting, so, off we go to the yarn shop.

Score another one for Team Knit, and another mighty participant in the Kansas City Knitting Revolution!

In Depth: Playful Stripes

This blanket holds a special place in my heart: it went to school with my son in his preschool years, it is the blanket that we reach for when he isn't feeling well, it travels with us on road trips, and gets tossed down at the park for a picnic.  I love it because the design is simple, the yarn is easily washable, and the colors are cheery.  I consider this blanket to be the one that a mom or friend knits for a new baby; a blanket that gets used, that is easy to care for, and that will stand up to the use of a toddler.

There are a couple of design choices that I often receive questions about: a finished edging, and whether or not the blanket is a full mitered square or not.  As you can see below, there is not a garter border around the edge of the blanket, and it has a single mitered angle.  This was a decision that I made to keep the pattern very attainable for beginning knitters, and I think it preserves a very modern look to the stripes.  The stockinette portions at the edges curl in a tiny bit, but the garter stitch stripes keep the blanket from really rolling at the edge.  The single mitered corner forms a square, while having 'L' stripes.  The only key to this is that your stitch and row gauge need to be the same (or close, since garter stitch can stretch a bit with blocking). 

The projects that come from this design have really impressed me.  Sharon, Rachel and Jessica (a mother/daughter/sister team) worked on this blanket from wool produced by their sheep.  They passed it back and forth at each stripe, and they lined the back with some fleece fabric and quilted it using a Tied Quilting technique.  I love that idea, and I really think their color choices are fun.

Photo Copyright JessicaM; used with permission.

Photo Copyright JessicaM; used with permission.

Sallie created a beautiful version in blue, green, yellow and white.  In her notes, Sallie mentions that the worst part of the project are the ends, and I would have to agree.  Typically in striping projects, at least some of the colors can be carried up the side, but with this design the stripes are really too wide for that.   I tried to be disciplined and weave in the ends at the end of each pattern repeat, and that really helped.  As the rows became shorter though, momentum pushed me forward, and I left the last couple of repeats with their ends hanging until the end.  If you have saved your ends until the end, I recommend taking it along to knit night, and tackling them there.  Somehow talking distracts me from the tedium.  I'm not sure about Sally's strategy for handling the ends, but she did a beautiful job with her blanket.

Photo Copyright SalliesJeans; used with permission.

Photo Copyright SalliesJeans; used with permission.

Jennie made a blanket in all of my favorite colors, and then modified the pattern to add a finished edge to the two unfinished sides by picking up along the edges and knitting 5 garter ridges in one of her contrast colors.  I really like the way it turned out.  If you are up for picking up stitches, it adds a lovely finished edge to the blanket, and probably helps it stay in a nice square shape.  

If this is a modification you want to make, pick up and knit into the edge, placing a marker at the midpoint.  Your number of stitches should be about the same as the number of stitches you cast on in the beginning.  Decrease at the corner, as you did for the blanket body.  For the nicest finished edge (a tip I picked up from Elizabeth Zimmerman), bind off in purl on the right side.  

Photo Copyright Fooshknitstoo; used with permission.

Photo Copyright Fooshknitstoo; used with permission.

Finally, I'd like to cover an amazing modification of the pattern.  Actually, this should probably be its own pattern, because really, the Playful Stripes pattern just won't get you this blanket.  Trust me, if you read through Peggy's notes, and think you could do it, then you really don't need to buy this pattern. 

Peggy's granddaughter saw the Playful Stripes blanket and requested a blanket similar in color, so Peggy went to work, using the pattern as color, texture, and stripe inspiration.  Her blanket is absolutely beautiful, way larger than I would have been able to finish, and it sounds like it is well loved.  Isn't it amazing!

Photo Copyright Peggy; used with permission.

Photo Copyright Peggy; used with permission.

Clicking on any of the project photos above will take you to the project page on Ravelry where you can find more information about these projects.  For more information about the pattern, please follow this link: Playful Stripes.

Do you have questions about this design that I didn't answer?  Is there another pattern that you would like to see featured next week?  Please leave a comment and I will answer your question, or adjust my plans to get your pick covered next.

The Week in Review (February 9-15, 2015)

I sat down to write this post yesterday, but couldn't quite concentrate.  Before editing and child distraction methods were employed, the photos above looked a bit like this:

The school district made this a five day weekend, and Ethan has been hanging out with me since about 3:00 Wednesday afternoon.  For a couple of years now, he has been dodging the camera nearly every time I try to take his picture, so most pictures look like he is on the run.  I start a blog and want to take a few nice photos, and he is suddenly interested in being photographed again.  He goes back to school tomorrow, but until then, my brain power is sort of divided, and my camera is put away..  

This week in my Year of Making included finally blocking my Millisande,  working on a new sweater design, and baking a Lemon, Almond, Ricotta cake and a pan of Cream Cheese Brownies.

Since you are likely here for the knitting, I'll start there.  My Millisande is worked in Anzula Oasis, and I really couldn't be happier with it.  I was slightly off on the gauge, made some changes to the neckline depth, and wound up with a sweater that I love to wear.  I think this yarn combines two great fibers (silk and camel) in a beautiful blend that takes dye in an interesting way, is comfortably warm, without being too warm, and I really like the cables and seed stitch in this yarn.  I am hoping for a few modeled photos, and will post them as soon as I have something worth sharing.  

The unnamed for now sweater design is also worked in a yarn from Anzula: their Cricket, a DK weight Merino, cashmere, nylon blend.  This is my first sweater design, and I challenged myself to sketch, swatch, and then at least start to write out the pattern before I cast on.  I have written the pattern to the neckline shaping, and I am hoping to have a finished draft pattern by the time I have a finished sample.  Then it will be off to the tech editor, and out to testers for a Fall release.  I've managed to nearly complete the neckline shaping and started to shape the armhole, so I have some pattern writing catch up to do, but that will wait until Ethan returns to school and the house is quiet again.  

Moving right along to the baking!  The Lemon Almond Ricotta Cake is one I make for breakfast.  We try to keep to a gluten free diet, at least at home, and this cake is one of the better, not too sweet options that I have discovered for an on the run breakfast.  (None of us have Celiac's disease, so please don't assume that all recipes I link to are safe.)  Somehow the protein in the cake keeps me full for a while, much longer than other sugar-y pastries would.  I make the cake pretty much as it states in the recipe, except this time I had five Meyer lemons that were looking a little sad, so I zested them all, and put it in the batter.  I also decided to use my springform pan to allow the cake to rise a little higher, and added about 1/2 teaspoon of baking powder to help that along a bit.  

Finally, the Cream Cheese Brownies that Ethan and I made on Saturday.  Sometimes I like the noise of the television when I am working around the house, so when Ethan is home, the Food Network is always a safe option.  Ethan tends to be a worrier, so I make sure that news, or dramas with intense topics are never on when his ears could be listening.  Well, he was inspired by the Kids Baking Championship, and asked if he could learn to bake.  I am always open to him being in the kitchen learning with me, so we decided to make his dad's favorite dessert, in honor of Valentine's Day.  Ethan had a little lesson in measuring ingredients, fractions, and the art of the double boiler.  His level of interest wained a bit before they were in the oven, but it rose again when they were cooled and ready to eat.  I had never made brownies from scratch before, and these turned out really nice.  

That pretty much wraps up last week around here.  The plans are a little fuzzy for this week, but there will be more making, I am certain.

Getting Started

I suppose that mid-February is as good a time as any to get a start on one of my 2015 goals: to start a knitting design related blog.  So, here you have it: the start of StackedWoolens.com.  

I've never blogged before, but I always feel like I have more to say about my designs than can reasonably fit on the pattern pages or in the Ravelry notes, so that information will be presented here, for those who want to learn a little more about each design before casting on.  I'll also have an opportunity to share design schematics, extra sizing information, and yarn notes for new patterns.  

Speaking of new patterns and goals for 2015, I think sharing those would give a little information about where this blog is going and what you can expect to find here.  I've decided that 2015 is a year of making for me.  I was inspired by Miriam Felton in 2014, and decided to embark on my own journey.  Part of my making for the year includes designing my first collection of sweaters, designed with the curvier woman in mind (more on this as we go).  I also feel like this Year of Making is a great opportunity to strive for a healthier version of myself, and to focus on making do, mending, repairing, and spending less time thinking about what I want to buy next.  

So, with that said, until I have new information to share about the previously mentioned sweater designs, I will be doing a weekly wrap up in my Year of Making journey each week; I will also be going back to previously released patterns and featuring them here, answering some of the frequently asked questions, sharing additional photos, and highlighting amazing knitter projects.  

If you have found this page, please know that as you poke around the site, that it is still under construction.  I will be updating the pages with knitting related photos and more information in the next couple of days.