Time, Talent, and Treasure

     The three words we hear from our pastor on the subject of Stewardship.  Many have the misconception that the churches have their hand out for your money (treasure).  But the fact of the matter is that they need our time and talents.

As a mother of three boys that are attending parochial school, I use this same philosophy towards my efforts for school.  Of course, we pay tuition, but I try to spend some time and put my sewing and crafting skills to work also!

So what is this colorful mess?  This year's contribution to our school auction.  Admittedly, I decided to help my friend who wanted some help for PURELY selfish reasons.

I wanted one something ALL for myself!   This is my oldest son's last year at our school.  He is graduating from 8th grade.  As much as he would love to stay, our school include the high school grades.   My girlfriend and I really wanted to make our 8th grade project special.  It is the last chance we can get something made/designed especially by our child.  Each student chose a charm and a paper.  They also were tasked to write a paragraph either thanking their parents, describing what their experience at the school meant to them, or something spiritual.  They then asked them to pick one word to be placed in the bezel.

We wanted to just make pendants.

But then realized, unfortunately, that some of our students have lost their mothers.  Yes, one left us way too soon just a few months ago.  So then we thought of other uses for the bezels.  

We came up with these:

 

We thought...

• key chain
• Christmas ornament
• rear view mirror decoration

Frankly, anything you can think of, right?

So I probably will forget to hand in my receipts from the large purchase of supplies, so there is my treasure.  Oh yeah, I have to buy mine too!  As for time...many hours, thankfully shared with a good friend.  Trying to get 75 students to cooperate wasn't as easy as it sounds.  Let alone making sure we used the right paper and charm for the right kid!  And talent?  Not mine, just bringing my knowledge to the table for this one!

  As you can see above, I already put Josh's in a shadowbox, but I hear that the moms are already planning to wear theirs at the graduation ceremony.  I better get the glue dots off the back of mine so I can wear mine too!

  I PROMISE I will post the tutorial on how to make these sooner than later!  And I have a funny story that proves that motherhood does cause brain damage (as Bill Cosby would put it!).

 But in the meantime....aren't they pretty all laid out?

A WHOLE Lot of Nothing

Happening here:

My sewing machine is at the shop.  The needle wouldn't move up and down when the pedal was pressed.  Just beep, beep, beeped like crazy.  I have had it for 7 years and am VERY worried.  I really don't want to buy a new machine right now when I am saving for a longarm machine.

My sick puppy is a Singer Quantum 4440

 I know Singer has gotten a bad reputation lately amongst the online community, but I have nothing bad to say about it.

It has a kajillion stitches including some special decorative embroidery stitches.  It came with a lot of feet, including a walking foot.  I have a separate machine for embroidery only.  I love that I can be sewing on my Singer while my Babylock works things out!

They are worried that the computer is "off".  Things might get really expensive.

  Apparently, they see a lot of machines that are computerized sewing machines out there.  They are wonderful, but like a car, you buy a fancy model, pay the fancy price, you are going to have to keep shelling out cash to keep them in shape.

In the meantime, I have been using my sons' sewing machine.

  It is a Brother LS-1717.

  

I bought them the blue version though! 

It is pretty handy, but VERY basic!!

Makes me miss my machine even more.... 

If it looks like I am buying a new machine, any suggestions?   

Bloggers Pillow Party

Umm.....as you all might surmise, I LOVE throw pillows.  I make throw pillow slipcovers ALL the time!  When I saw another blogger that I follow enter into the party.  I had to join the Bloggers Pillow Party!

I actually have plans for an Easter pillow, but I had to put it on "hold" because my sewing machine is in the shop.  I did start it with my son's machine, but he doesn't have free-motion quilting capablilites!

So, I am linking my Brand New Heart Pillow that I made in February, right before Button's arrival.  It sits happily in my  "Studio" (remember my tongue-in-cheek name for my room!)

I have to say...I was feeding James last night in my room, and I couldn't help but enjoy it!  It makes me smile for so many reasons!!!  

Why do I love it?

• It showcases my first try at Foundation Piecing.
• I love to free motion quilt, but always stray away from large projects.  A throw pillow is easy to work through my finicky machine!  I am secretly waiting for a long-arm machine.  Little does hubby know how I would worship him if he bought me one!
• I love to do hand embroidery.   The words took me a long time, but were so worth it!
• I love when I use a design from a book.  I am always buying them, but never using them as much as I should.  This one is from: Love and Friendship Quilted Pillows.
• I love that the quote actually stirred up some of my Grammar Police friends.  The one word "That's" really had some feathers ruffled.  I begged for forgiveness since I didn't come up with the quote myself.
• I was able to use some buttons from my collection.
• I used only the fabric scraps I had on hand!  A dinner napkin and scrap pieces from countless projects!
• I took pictures so I could do a tutorial. 

And LAST BUT NOT LEAST.  This pillow embodies everything that our family has been through since June 2009. 

Do you think it is a worthy entry?

Easter Eggs

Do you just love? 

I do!!! 

I found this basket on sale at Hobby Lobby last week (love those right before the holiday sale because they need to make way for Memorial Day/Fourth of July decor!!!)

The egg tutorial is one I had saved and printed TWO years ago.  I didn't even know I was getting it from a blog.  Now I have my very own!?!  Weird, hunh?  The blog is Retro Mama.

 She used awesome fabric.  I, of course, wanted to use up my scraps!  I decided to do two tones for each egg...can you see them?

The plaid one is my Rogue egg.  If you know quilting, there are a lot of ladies that always have a rogue square.  Thought it was fitting!

Yes, crazy that I am working on Easter stuff still...but technically, it is still the Easter season in the church for 49 more days!

Easter Basket Liners

As promised..the Easter Basket Liner Tutorial.

I really wanted to post this because if you are like me, there is probably a good possibility that the bin you store your Easter decorations in is still sitting out.  Why not make them now and then you don't have to worry about it next year!  If you don't have a basket/baskets...run to the store now.  Usually they are upwards of 70% off at the local craft stores!

The reason I decided to do a tutorial is that every liner tutorial I found was very loose and I like a tailored look.  I found these baskets at JoAnn Fabrics on sale two weeks ago.  They are really sturdy for my rough and tumble guys.

TUTORIAL

First, I measured the bottom of the basket by drawing a circle on cardboard.  I then trimmed it to make sure it fit on the inside.

The template made it much easier to make 4 circles the same size.

Measure the circumference and height of the basket sides.  I added 2 inches for seam allowance and hem. 

 A simple small hem (folded twice 1/4 inch) is sufficient.  At this point is when you embroider the name.

Fold and sew the short ends together (wrong sides facing each other).  Start at the raw edge and stop at the height of the top of the basket.  Be sure to backstitch to secure the seam.

  

  Fold the circle in half so the center is marked.  This is where the basket handles are.

 Pin the strip with name onto the circle.  Align the seam with the center that was marked on the bottom circle so that the slit that was left open matches the basket handle.

 Then sew the edges with a 1/4-1/2 inch seam allowance.

Using the centerpoint line that was folded into the circle, cut slit down from the hem on the opposite side for the other basket handle.

I was in a rush for the boy's Easter egg hunt so I had stopped right at this point.  I thought the fact that it was so snug to the basket, that it wouldn't get loose.  So I came up with the following plan to fix the problem.

I used a two inch bias tape maker.  You don't necessarily need it, but I find them pretty handy.  Otherwise, just fold and iron both side in.

I didn't do a good job taking photos!  I forgot to show exactly WHERE the bias tape goes!  Hopefully you will understand when I say that the bias tape goes on the edge of the slits that were cut out.  Start at one hem and work your way up the slit, then keep going down the other side of the slit.

After adding the bias tape, I added a two buttons to the corner of the FRONT flaps (where the name is)

I added two looped elastic on the corners of the back two flaps.  I made mine about 2.5 inches so that when it was looped, it was one inch after being sewn on.

Now the flaps are secure and ready for RUNNING!!

     

Or hopping?

Here they all are in a row...terrible picture taken in the wee hours of the night.

Which brings me to my next question?  Why is the Easter bunny depicted as a boy?  Last time I checked, he was sacked out in bed the night before!

Hopping down the bunny trail.....

From Pottery Barn

Do you know what my most favorite holiday is?  

Easter.

I have loved it since I was a little girl.  

Wet grass.

Pastel colored eggs.

Baskets.

Bunnies.

I wasn't a frilly little girl.  I was very much a tom-boy.  I think I have shocked my own mother in the past few years with my need to wear skirts these days!  I was a pants/shorts kind of girl.  I didn't like my hair brushed.  I wanted to run, like them!

I often think it is because I have become surrounded by the male chromosome in some serious high levels, that I have become inordinately feminine.  

So in honor of my favorite holiday, I have made basket liners for my boys.  Embroidered with their names so there is NO confusion on my favorite day.

 

 

I think they are cuter than the Pottery Barn ones from above.  Not strictly masculine, but the boys said it was very "Eastery" fabric.

I think they only care about what is INSIDE the liner!

Josh was "too cool" to join in the neighborhood Easter Egg fun.  James came along for the ride.

Don't you wish you could hang out all day like this?

Hoping to have a QUICK tutorial on the liners sooner than later!  Have to work on securing the flaps.  As you can see, they came loose during the hunt!

The Early Birds

 The Early Birds are for some little friends walking in a March of Dimes walk next weekend.

They made their appearances quite a few weeks early and are here one year and a bit later!

 

This shirt is for the other little girl.  I added a little bird for her twin brother.  Momma carried him knowing he had a fatal condition.

I thought it fitting to make Tyler's bird small because he will always be that tiny baby bird in mom's eyes.

On the backside, I embroidered all their stats in the same font.  Arrived at 32wks and 4 dys, birth date, weight and length. I sure hope their mom's like them!

I think these birds would look cute for anything.  They remind me of Spring! 

....................................................

I think I just got an idea for my family room throw pillow cover...of course, I will keep you posted!

 

Here comes Peter Cottontail...

Maybe he will show up tomorrow!

I have a bunch of projects hopping (I know, I know..not very funny)

and have to get a special order done

Can't wait to post.

Just wanted you to see that my "Studio" does sometimes get messy…..

Now if only I could compose my blog posts using my Mac without using HTML. NOT too happy about how this looks....edited to add: THANK YOU GOOGLE CHROME...Goodbye Safari!

Miss A's blanket...

is on its way to her momma since yesterday afternoon.

Hope she likes it.......


Edited to Add:  Since her momma gave permission!  This is for Miss Amelia Grace.  She left her Mommy, Daddy, and Big Brother Noah way too soon.


For more information on how to have your baby/babies footprints embroidered on a blanket...check out Butterfly Kisses

Where have I been?

Sitting in front of this......

Why would this be difficult?

Because I haven't been on a Mac since I was in High School.


If you were sitting right next to me, you would have seen that I somehow moved my wireless mouse the wrong way and lost this post.  Thank goodness that Blogger saves my entries as I type!


So, please bear with me.  I had all this tech stuff in the bag finally, but dear hubby talked me into this beast.  Now I have to figure out how to transfer all my information from my laptop, some of which has to be converted.  I can't even pull up some of the photos I have stored on it to show you my newest projects.  I have to figure out if my embroidery software can be made compatible.  If not, I need to do some shopping.


Oh yeah, have I mentioned that I don't even know how to use this thing?  Supposedly, when this arrives at my doorstep in a few weeks...

My life will get better? 

 Or more complicated since I am touch screen challenged.

But I think I have a new saying....

Once you go Mac, you can't go back.

Wish me luck.....

My Mess of a Blog!

This is a shout out to my blog following friends!

I realize more and more that my blog doesn't have a true "fit".  If you read my heading, it says that this blog incorporates my love...for TOO many things!

I know that I have loss followers who are wondering, what the heck are all the craft posts?

I know that I have craft/sewing follower who are wondering, what the heck is with all the grief/loss posts?

The answer is this.

I would love to compartmentalize all of my posts.  I would love to have separate blogs.  

But the reality of it is this.  I love to sew.  I love to craft.  I love my kids.  And I have lost a child.  All of these things make me who I am am.   And if you are having trouble understanding this maybe this post would best describe what I am trying to say.

Therefore, in a way, this post is to let you all know that I understand that my blog is a mess.  Honestly, my life is messy.  I cannot compartmentalize all my parts.  They are all with me at all times.  I sit at my sewing machine and see this. 

  

In short, I have thought of changing my blog, but I can't bear to.  I would then have to separate these things in my life.    In plain speak, I DON'T WANT TO.

So thank you for following me.  Please be patient with me.  I honestly don't know how else to do it.

If you have suggestions, I will gladly listen.  I need all the help I can get!

Thanatophoric Dysplasia

Information below from the Genetic Home Reference Website with added notes from me!

What is thanatophoric dysplasia?

Thanatophoric dysplasia is a severe skeletal disorder characterized by extremely short limbs and folds of extra (redundant) skin on the arms and legs. Other features of this condition include a narrow chest, short ribs, underdeveloped lungs, and an enlarged head with a large forehead and prominent, wide-spaced eyes.
Researchers have described two major forms of thanatophoric dysplasia, type I and type II. Type I thanatophoric dysplasia is distinguished by the presence of curved thigh bones and flattened bones of the spine (platyspondyly). Type II thanatophoric dysplasia is characterized by straight thigh bones and a moderate to severe skull abnormality called a cloverleaf skull.
The term thanatophoric is Greek for "death bearing." Infants with thanatophoric dysplasia are usually stillborn or die shortly after birth from respiratory failure; however, a few affected individuals have survived into childhood with extensive medical help.

Jamie Lynn was diagnosed with Type I.  At birth, she presented with a very small chest, tiny arms and legs but with large folds of skin.  Her facial features were consistent with most other dwarfisms.  Large forehead and tiny nose.  Her diagnosis was confirmed by X-rays at birth.  She died an hour and fifteen minutes after she was delivered via c-section.  We opted to not do extraordinary measures so that her time with us was peaceful.  It seems that most of the ladies online have an average of 1-2 hours post birth, but I do know of one baby boy that lived for 75 hours.  As of 2010, there have been only 4 individuals that have survived into childhood.

How common is thanatophoric dysplasia?

This condition occurs in 1 in 20,000 to 50,000 newborns. Type I thanatophoric dysplasia is more common than type II.

Every few months we have a new member on our online support group that either is diagnosed with some sort of dwarfism, usually a fatal form.  In my online world, I have only "met" one mom with Type II since 2009, but several with Type I. 

What genes are related to thanatophoric dysplasia?

Mutations in the FGFR3 gene cause thanatophoric dysplasia.
Both types of thanatophoric dysplasia result from mutations in the FGFR3 gene. This gene provides instructions for making a protein that is involved in the development and maintenance of bone and brain tissue. Mutations in this gene cause the FGFR3 protein to be overly active, which leads to the severe disturbances in bone growth that are characteristic of thanatophoric dysplasia. It is not known how FGFR3 mutations cause the brain and skin abnormalities associated with this disorder.
Read more about the FGFR3 gene.

The FGFR3 gene drove me mad during my  pregnancy.  After much investigation, there are actually four dwarfisms linked to FGFR3.  Three which are fatal, and the other one?  Normal dwarfism, known as Achondroplasia.  It appeared that it was all about which Amino acid receptor mutated.  It was so frustrating to know that Jamie could have very well lived if the gene had just been a "tad" different!

How do people inherit thanatophoric dysplasia?

Thanatophoric dysplasia is considered an autosomal dominant disorder because one mutated copy of the FGFR3 gene in each cell is sufficient to cause the condition. Virtually all cases of thanatophoric dysplasia are caused by new mutations in the FGFR3 gene and occur in people with no history of the disorder in their family. No affected individuals are known to have had children; therefore, the disorder has not been passed to the next generation.

Basically, when our babies are conceived, a new mutation occurs.  The experts feel that it is one of those conditions that goes under the heading "Lightning Strikes".  They feel that lightening strikes are so rare and having two strikes is almost unheard of.  This is why we decided to go ahead and try to have another child after Jamie.

 Is it completely impossible to have another baby with TD?  No.  There have been case studies of a woman who had three consecutive TD births.  However, most women I "meet" online with same diagnosis go on to have healthy children.  Does that exclude other possible chromosomal issues?  No!  I won't lie when I say this isn't easy!

 

Where can I find information about diagnosis, management, or treatment of thanatophoric dysplasia?

These resources address the diagnosis or management of thanatophoric dysplasia and may include treatment providers.

• Gene Review: Thanatophoric Dysplasia
• Gene Tests: Thanatophoric Dysplasia

You might also find information on the diagnosis or management of thanatophoric dysplasia in Educational resources and Patient support.
To locate a healthcare provider, see How can I find a genetics professional in my area? in the Handbook.

I would copy all the information linked above, but it is gargantuan!  Our story?  

Diagnosis: 

 Jamie was diagnosed at her 18wk Anatomy Scan (ultrasound).  The radiologist ONLY found shortened limbs of ALL long bones (meaning legs and arms).  He did not note any other irregularities.  He had us consult with our OB for options.  The first diagnosis we were given were actually chromosomal issues.  They included T21 (Down Syndrome), T13, and T18 (both which are pretty fatal).  Our OB suggested that we have an amniocentesis.  Termination of the pregnancy was offered at this point.  We stated that was not an option for us.  And for those who wonder, we are Catholic, but it our religion really didn't play into this fact. 

 My L&D background did.  

We had an amniocentesis done two days later.  We received our phone call from the OB on a Sunday.  Good news?  Yes, the baby's chromosomes were normal, which indicated no T21,T13,T18.   The bad news?  Something was still wrong with her.   

We were directed to our perinatologist.  At our appointment, he scanned our baby and immediately said that he felt that the baby had a fatal dwarfism.  Either OI (Brittle Bone Disease) or TD.  This is where I am going to be honest.  He made this decision pretty quickly and immediately offered termination.  After we expressed our feelings about termination and that we would carry NO matter what, even if the condition was fatal, he finally took more time.  All of a sudden, he felt that he baby (we did not want to know her gender...we like surprises!) might possibly have achondroplasia ("normal" dwarfism).  I only mention this because the medical community seems to be real quick to offer termination. 

 What you don't know?  MOST women opt for termination because they don't know that they CAN continue their pregnancy. 

Off to the Children's Hospital we went.  They did another extensive ultrasound and a Fetal MRI.  We received the results a few weeks later (she was approximately 24wks)  that indicated that Jamie had Thanatophoric Dysplasia with a differential diagnosis of achondroplasia.  

Hindsight?  All we needed was to make sure that the amnio included a genetic mutation screening for dwarfism.  It would have made things so much easier!  That little bit of hope that she had normal dwarfism hung at the back of our heads.  AND there was a possibility that she had a new form of dwarfism.  There are over 200 types of dwarfisms and new ones are diagnosed constantly.

Management?

  The remainder of our pregnancy consisted of numerous ultrasounds to track her growth, my amniotic fluid levels, and her general health.  She was a trooper and would surprise them with her activity inside.  She made fetal breath movements, which indicated that she was trying to breathe.  Her brain always looked healthy and normal, and her heart was strong.  When we reached 28wks, my amniotic fluid levels started to increase.  By 32 wks, we had reached epic proportions!  A normal AFI is about 8-18.  By the end of the pregnancy, we reached 54!   I looked like I was carrying twins, and it started to considerably compromise my breathing (history of asthma) and started taking a toll.  It also indicated that Jamie was expelling too much fluid and not "breathing" which would level the fluid out.  This and the fact that the ventricles started swelling were the catalyst to decide to deliver just shy of 36wks.  Any longer, and she would have been stillborn.

Treatment?  

We had none.  You cannot "fix" the fact that every single cell of her body had this disease.  The reality is that her trunk and head were growing at normal or above normal rates, and her limbs were lagging behind.  By 35+wks, her head was measuring at 41wks and her limbs were still behind 17wks.  Yes, you read that right.  Her limbs never even measured the length that they should have been at her anatomy scan.  It was devastating.

Delivery?  

We had to deliver via c-section due to the fact that she was breech presentation, which seems to be a common theme amongst the moms that I have communicated with.  The fear of a vaginal delivery is that they are likely to have entrapment problems.  Their bodies' would be delivered without difficulty, but their heads could get caught in the pelvic area and cause severe damage.

This actually worked well for us, because we had read that vaginal deliveries can compromise normal dwarfism babies also.  Their tracheas' are so short and can be easily closed off by their larger than normal heads.  We figure this gave us the time with her that we wanted.

Birth? 
 So this brings me to her birth!  We first found out we had a girl.

 We actually had to ask because the L&D staff are so used to parents knowing already!  Our OB wrote in bright red...DO NOT TELL GENDER on our chart.  He even tucked the amniocentesis results in the way back of the chart!  We also

 finally could actually confirm her TD (remember that differential diagnosis of achondroplasia?) by X-ray.  

Her x-ray showed that her lungs were just too small to sustain life.  It was painful, but liberating in so many ways.  We did not have to do superhuman treatments to just prolong a short life.  We wanted to hold her and love her, not watch her in a isolette and not be able to touch her.  She was with us for 75 min.  The most beautiful and painful minutes of my life.

We miss her dearly.

Where can I find additional information about thanatophoric dysplasia?

You may find the following resources about thanatophoric dysplasia helpful. These materials are written for the general public.

• MedlinePlus - Health information (2 links)
• Educational resources - Information pages (3 links)
• Patient support - For patients and families (4 links)

You may also be interested in these resources, which are designed for healthcare professionals and researchers.

• Gene Reviews- Clinical summary
• Gene Tests- DNA tests ordered by healthcare professionals
• ClinicalTrials.gov - Linking patients to medical research
• PubMed- Recent literature
• OMIM - Genetic disorder catalog (2 links)

What other names do people use for thanatophoric dysplasia?

• Dwarf, thanatophoric
• thanatophoric dwarfism
• thanatophoric short stature

For more information about naming genetic conditions, see the Genetics Home Reference Condition Naming Guidelines and How are genetic conditions and genes named? in the Handbook.

What if I still have specific questions about thanatophoric dysplasia?

Ask the Genetic and Rare Diseases Information Center.

Pass me a note or email me at boysbuttonsandbutterflies@gmail.com

I would love to "chat" with you! Just leave me a note in the comments section!

Where can I find general information about genetic conditions?

The Handbook provides basic information about genetics in clear language.

• What does it mean if a disorder seems to run in my family?
• What are the different ways in which a genetic condition can be inherited?
• If a genetic disorder runs in my family, what are the chances that my children will have the condition?
• Why are some genetic conditions more common in particular ethnic groups?

These links provide additional genetics resources that may be useful.

• Genetics and health
• Resources for Patients and Families
• Resources for Health Professionals

What glossary definitions help with understanding thanatophoric dysplasia?

autosomal ; autosomal dominant ; cell ; dwarf ; dwarfism ; dysplasia ; gene ; mutation ; new mutation ; protein ; respiratory ; short stature ; stature ; tissue
You may find definitions for these and many other terms in the Genetics Home Reference Glossary.
See also Understanding Medical Terminology.

References (3 links)

The resources on this site should not be used as a substitute for professional medical care or advice. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional. See How can I find a genetics professional in my area? in the Handbook.