Sunday, June 26, 2011

The Versatile Blogger Award

Thank you, Lisa (Home to 4 Kiddos) for awarding me with the Versatile Blogger Award! 

The rules of the award are:
1) Thank the giver
2) Tell 7 things about yourself
3) Award fifteen bloggers with the award

Fun Stuff!   Seven things about me... hmmm...

1) I love my Catholic faith
2)I love being a wife, mother and homeschooling mom (well, most days, anyway! ~smile~) I love my family.
3) I am passionate about finding a cure for Shwachman-Diamond Syndrome and Mitochondrial Disease
4) I think God has a sense of humor because I often feel he picked the wrong mom to raise chronically ill kids! Most days, with God's grace, I handle it well.... other's I don;t do so well
5) I love and support the Second Amendment
6) I love gardening
7) I have a passion for cooking (hey-- that's why I started Pattie's Kitchen)

Tomorrow, I will post my chosen winners tomorrow.....

Heading to NYC

This week, I will be attending the 6th International Congress on Shwachman-Diamond Syndrome.  I'll be posting my notes on the SDS blog.  Pray for all my guys...... no one is used to mom being gone.

My train leaves at 3am and I found myself in WalMart searching for another travel pillow tonight around 9 pm.  There is a story about my travel pillow.  You see, I have three boys and one day several months ago, I noticed the pillow was missing from the car.  A month went by and I still couldn't find my pillow.  One day, a friend's daughter noticed this bright pink "thing" in the tree.  Yes, in the tree.  My pillow was in the tree. At first, the boys had no idea how the pillow came to be in the tree.  I had an idea that it was used as a basketball, as it was in the tree just behind the basketball goal. Later, the youngest fessed up to tossing it and trying to make it in the goal, then it went higher and higher until it landed in said tree.

Ten hours on a train....... whatever shall a mom do?  I'm bringing my rosary along for the journey and hope to read a bit.  Of course, I may just sit, stare and enjoy the quiet with no one calling, "Mom, mom, MOOOOOM!"  It has been a long time since I've been away from my people!

I'm excited to learn more about the latest research on Shwachman-Diamond Syndrome, but am not looking forward to the long days of presentations.  I'm hoping the room has a window!  We'll be at the New York Academy of Sciences at 7 World Trade, so I hope to escape to St. Peter's Church during lunch. I was excited to see their Mass schedule.  They have Masses daily at 7 and 7:45 am and at 12:05 and 1:05 pm!  Of course we all know this church because of 9/11 events, but did you know that this was the church were St. Elizabeth Ann Seton converted to Catholicism? 

I'm back to normal after my Cleopatra episode and I'm ready to go to NYC to the International Doctor's Congress.  Hope to get sleep on the train so I can keep up!  

Tuesday, June 21, 2011

Cleopatra is back

Last week was a whirlwind week.  I felt like the world was spinning as I realized,once again, that my boys actually have a bone marrow failure syndrome (low counts again!) and that the bone marrow biopsies scheduled in August are really necessary. Well, that and the fact that the doctor said no to a trial off of IgG. Cleopatra, Queen of Denial, is my middle name.  Perhaps it is God's grace.  I mean, if we really pondered the diseases and the possible outcomes on a daily basis, I am not sure any of us would cope very well!

Joseph fought his IgG infusion this week.  I hate the SCIG battles.  I hope our old hem/onc weighs in and lets us trial off for the summer.  For now, we continue IgG each week

I'm not sure I mentioned it, but a week ago this Sunday, a man was killed after Mass. He pulled out in front  of a fire truck.  Two of my boys were outside.  Kernersville Man Killed by Firetruck     OCD alert all week.  So far, I have survived.  One day, a fire truck was coming straight at us on a two lane road..... having it pass without any complications seems to have helped my youngest.  Now he says he will only be worries if he is driving.   This past Thursday, a friend of my oldest son was in a wreck that killed two people

 A very sad week and we are praying for all the families who lost loved ones.  I'm coping better this week than last (read: back to Cleopatra mode).  I made it to confession.... and my penance is the hardest penance I have ever been given.  I'm supposed to lock myself in the bathroom/room for 5 minutes of quiet each day this week.  Um... that isn't possible in this house until late in the evening!  What type of sin is it if you don't complete your penance?

My oldest is up between 6-7 and the others are up until 10 or later (asking questions, OCDing, etc). I do walk 3-4 miles a day, but that isn't really quiet-- neighbors talking at times and I like to listen to music. I try to find silence, but there is always banging, ringing, singing, arguing, music, etc going on.  I found silence two days in a row, and then my mind thinks too much!  It doesn't react well to the silence which allows random thoughts to fill my head.

I suspect that my house is like any other house with three noisy boys.  I'm working on my penance this week and I'll let you know how it goes. I need to go lock myself in the bathroom while they seem to be trying to fall asleep.  Maybe I can get to 4 minutes and 30 seconds! Ahh.. see, here it is 10:15 and one of the guys just came to ask me a question........  never alone for long!

Thursday, June 16, 2011


I didn't think I'd ever hate a letter like I hate the L.  I suppose if we are talking cholesterol, L is a good thing, right?  Today I have the L next to the white blood cell count.  Not that we don't know it, but seeing it is a different matter completely.  It is almost bone marrow biopsy time  and I start wanting to hear things like "normal".  Here we are almost 15 years later and Shwachman-Diamond Syndrome is still part of our world.  Mitochondrial Disease is still here, too.   

We've had many miracles over the years, no doubt. I believe the times we've been close to transplant and then had the marrow change for the better ARE miracles.  I also wonder why God doesn't perform that miracle for everyone. David died last year because he needed a transplant, developed leukemia and did not have a match in the registry (Our Joseph doesn't have a match) -- why was Joseph spared and not David?  Harriet passed away on Good Friday and I wonder why her mom didn't get a miracle.  They had already lost Sarah to Shwachman-Diamond Syndrome several years earlier.  Why did their family have to lose two kids?  Of course, I understand that God's will be done....  but I want His will to be that the children live!  I have hope because I am God's girl and I know that he will do awesome and amazing things if it is His will.

We have a long list of friends who have died from SDS complications and SDS transplant complications.  Of the top of my head, the families I try to remember daily in prayer... Angela, Heather, Jessica O, Christopher, Dan, Tyler, Angelica, McKenzie, Jason, Anna,Colleen, Marc, Brendan, Devin, Melanie, Jessica G, Aley, Beatrice, Nathan, Sarah and Harriett We met so many of these families at conferences, camps and while we are at the hospital (Cincy). 

If you are not on the bone marrow donor registry, please consider joining.  You could be the miracle that saves someone's life! It is easy to join!  no blood draw!  They just rub swabs on your cheeks!

Saturday, June 11, 2011

Spiced Peach Muffins

Yesterday, I made spiced peach muffins with white whole wheat flour. The kids at the pool ate them up quickly! 
Finished Muffins
If you'd like the recipe or more info, please visit : Pattie's Spiced Peach Muffins where I have more pictures and the recipe.  I love the organic white whole wheat from King Arthur Flour because it has all the nutrition of red wheat without an overpowering wheat taste!

Friday, June 10, 2011

Garden Pictures

I love to take pictures of my garden in the morning. It is so much fun watching everything grow!  We've got Eggplant buds blooming, squash blossoms and today I picked my first Zucchini - Lungo Bianco (Heirloom seeds from Italy).  It is fun and exciting to watch the new daisy buds grow and open, too.  I've always loved working in the garden and digging in the dirt.  This year, I've not been so good to my roses, but hope to get them back on track and share pictures soon. Aren't these great pictures from this morning?

Zucchini - Lungo Bianco

Eggplant Blossom

My first Daisy Emerging!

Purple Coneflower

One of the flowers in my Wildflower Garden

Thursday, June 9, 2011

Handy Sean

Sean is a handyman around the house!  Remember the dishwasher repair guy messed up and the dishwasher leaked causing damage to the wood floor? I posted a picture earlier this week.... Since the owner of the At Your Service -TODAY "Appliance Repair" from High Point, NC did the original repair, we requested someone other than him to come back out (OH! He complained and moaned the entire time he was fixing the dishwasher! It was awful and had us laughing in the other room at times!).  Tony had originally come out to assess the problem and he is a great guy!  Unfortunately, Tony could only say that he didn't THINK anything his boss did caused the leak and therefore At Your Service -TODAY- "Appliance Repair" refused to repair our wood floor. 

I'm a dishwasher snob.  I love my dishwasher.  It is a Bosch.  Prior to the repair men coming to our home, the dishwasher would run here and there. The pump was broken and leaking and since the Bosch has an automatic water shut off once the dishwasher gets too full of water, we never had a leak, when the water level would drop, the dishwasher would run fine with water coursing through its insides with nary a leak.  Chris (the owner, not my hubby) came out to repair it once the part came in.  He walked through the door complaining how hard it was to fix the dishwasher, then proceeded to moan, groan and complain the entire few hours he spent in our home. Perhaps we should have moaned and complained that we were paying him over $400 to repair our dishwasher!

Chris even admitted to his worker, Tony,  that he did not run the washer before he closed it all up to be sure there were no leaks.  While Tony won't say it was caused by anything his boss did, we KNOW it was because of what his boss did.  We'd of given the repair guy the flooring we had, so they would not have had to pay for that! I  think it is an unethical business practice to know your shoddy workmanship caused damage to another's property and not even offer to repair the damage.  Luckily, we had extra wood flooring saved in the basement and my Sean is handy! There are a few imperfections, but for free and his first time, who is going to complain!? Here is the finished job (he only needs dad to help put the molding back under the dishwasher):

In the end, a few of the boards had mold on them from water, no doubt.. I am always dripping water near the sink. Luckily, there wasn't but a bit of mold growth on the wood (not on the plastic barrier).  Tile is in our future. 

Jam Sweet Jam and.... Diets

We've made more jam...... yum, yum. Yesterday, we bought some South Carolina peaches (better than Georgia peaches, I'm afraid!) and I made jam late last night.  Then, today, I made more peach jam along with some raspberry jam and blackberry jam.  Absolutely divine.  The boys had biscuits for breakfast and spread jam I made a few weeks ago all over them.  Strawberry and strawberry-blackberry mix were the jams of choice this morning. What I made last night and today go into the freezer for consumption later! Sunday we are going to pick tart cherries to make jam!  YUM.  I'll freeze some for pies, too. 

 If you want more info on how I made my jam, please visit the post on jam there at this link: Pattie's Wildtree Kitchen  I am really excited about my cooking blog and about starting Wildtree, too!  I'm going to post all sorts of recipes there, not just Wildtree exclusive.  I even have a few of my HCG Diet approved recipes posted there. If you are interested in HCG Diet approved recipes, they are posted here (more will be added as time goes on):  HCG Recipes . My friend and I did one round of the HCG diet over Lent and recently started a second round.  We had to create some tasty recipes to survive!  If you are into Low-carb cooking, I will also share those along with my sugar-free recipes!  I've lost over 30 pounds on the HCG diet!  My goal is to reach 45 pounds and then maintain by eating no sugar and lo carb during the week and then letting myself eat what I want on weekends.  During the break from HCG rounds, I did this and maintained my weight-- even lost 1/2 a pound! You can find low carb recipes here: Pattie's Low Carb Recipes.  Be sure to check back often...I just started the blog and will be adding recipes daily!!! 

Here are my jam pictures... don't they look yummy!?
First batch of Peach Jam
Raspberry, peach and blackberry jam

Wednesday, June 8, 2011

Mikel's Shwachman-Diamond Syndrome Story

Lovely Garden

I love to garden.  I love to watch the flowers burst into bloom. I love plants that attract butterflies and bees.  I know many folks are afraid of bees, but I love them.  I love to watch them dancing among the flowers. Right now my house smells of fresh cut lavender.  I cut lavender yesterday to press for my crafts and the scent is absolutely out of this world.  I think the scent of flowers makes the bees drunk!  I know if I were a bee, I'd be intoxicated by the sweet smells.



Tuesday, June 7, 2011

Around the World!

We are having so much fun learning about other places through our Postcrossing experiment! We've received many post cards already. We sent a card to a lady in Serbia, who messaged me on Postcrossing that she was also Catholic and that she would like to send us post cards of her church.  Very intersting thing happened! She sent me a post card with a quote from my favorite saint. The quote is in Hungarian, but his name is clear! St. Josemaria is my favorite saint!  Another lady from Poltava sent a beautiful post card made with her drawing.  She has a blog where she shares her artwork with the world!  Viktoriia's Blog She has the most wonderful drawings of shoes!  The blog is all in another language, but the art is gorgeous! 

Here are the post cards we have received:

From Barcelona, Spain- the Basilica de la Sacrada Familia

Card from Poltava. Victoriia's art.

Card from Germany

Our new Serbian friend's Church

Inside the Serbian church -the parish church of St. Elisabeth

Card from our Serbian friend with St. Josemaria's quote in Hungarian

Card from England
 Postcrossing is so much fun!  Give it a whirl!

Under Repair

Typical homeschool days are hard to find. Always something, right? Doctor appointments, repair men, and life. Right now, I am hoping everyone finishes the 4th quarter by July 9th! Our middle son cannot get his driver's permit if he doesn't finish his research paper.  You'd think that would be motivation.....but alas, the repair man, an unusual sight in our house, was a huge distraction today! 

Better to do everything yourself, right?  Hubby couldn't because of his work schedule and the inability to get parts....the service company already had them.  They "fixed" the dishwasher on Friday, but damaged something in the process.  YIKES!  We have a Bosch.  I love my Bosch-- it turns off if it leaks from the inside.  We found its only flaw....... it doesn't stop if it leaks on the OUTSIDE!  Had to rip up flooring today.  Not really a big deal, I suppose, since we do have extra flooring in the basement.  The day we bought the house, I said, "It is a dumb idea to have wood in the kitchen."  Yep.... black mold... not too far back, but evidence that water was getting between the wood all these years.  We'd just never had a massive amount of water that caused it to buckle. Luckily, the damage wasn't too much and the mold was contained to one small area near the sink.  I see tile in my future! Here's what my boys watched today....other than watching the repairman fix the dishwasher.

 We haven't had a repairman here very often....I think 2 repairmen in 6 years.  Not bad.  I wanted to put a plug in for my Bosch.  It is quiet, cleans like no tomorrow and I have run it 2-3 times a day for 6 years.  The pump went.... but I figure with the amount of use (repair guy says the average family runs their dishwasher 3 times a week!) we put about 12 years on it.

Thursday, June 2, 2011

Polish Postcard

Our first postcard arrived from Poland! We have had fun sending postcards around the world and are excited that ours will now start coming in!  Postcrossing is neat. The boys have enjoyed finding the cities where we've sent cards. Off to find Koszalin, Poland on the map! Happy postcrossing!