Happy Homemaker Monday ~ Week of August 19

Afternoon and happy Monday.

I meant to get this up this morning while Kyla was getting ready for the bus to pick her up but I didn't sleep well last night due to some allergy congestion and I was so tired. I ended up crawling back into bed for a bit. Then it was up and to a homeschool resource fair at a local library.

Our first week of homeschool (and Kyla in public) went rather well. Kyla's facing some anxiety but we think it may be related to some medicine she's taking for her acne. We should know better by the end of the week. Our weekend was rather slow, this weather makes it to where we don't want to get out and do much of anything. We did manage to get to Home Depot and pick up the supplies to get the hope chest's done. Now if the weather will just cooperate with me.

Okay, moving on to this week's Happy Homemaker Monday link-up with Sandra.



The Weather ~

It's still hot.
That's all I can really say. I'm sick of it. I'm sick of being sick of it.


On The Breakfast Plate This Morning~

I had cinnamon sugar toast for breakfast. A simple pleasure from my childhood that I love to share with my girls.

Right Now I Am ~

Ignoring all the housework I need to get done to write up this post really quickly.

On My Coffee Table ~

It's loaded down with pictures, cookbooks, Hayley's current library book, and some drink coasters.


On My Reading Pile ~

The Mark of Cain by Tom Knox
Outsider by Stephen King

Movies or Show's I Watched This Weekend ~

Finally finished up Jessica Jones. I think it ended rather well, sad it's over because I enjoyed the characters but I do think it had reached a point of closing.

I also watched an old Robin William's movie called Awakening. It was so very good and I highly recommend it. It's based on a true story during the summer of 1969 when a neurologist experiments with a new Parkinsons medicine to 'wake up' catatonic patients.

On The TV This Week ~ 

Mindhunter season 2
Preacher

And whatever I find On Demand that strikes my fancy.

Meal Options For The Week ~
  • roast beef
  • steak, sweet potatoes, asparagus
  • chicken 
  • pulled pork sandwiches
On the To-Do List ~

  • Housework (dusting, mopping, laundry, maybe wash the curtains)
  • Bath the dogs by Wednesday
  • School
  • Order homeschool shirts ASAP
  • Order one more photo album and try to get the rest of the photos sorted
  • Continue work on going through cookbooks
  • Get busy crocheting, two weeks to meet my goals for the month
  • Maybe go catch a movie this weekend with the family
Crocheting This Week ~

I am going to finish the penguin this week even if it kills me. I also want to get to work on the floppy cat that needs finishing. 

Looking Forward To ~ 

Cooler mornings and nights. Even though our days are still so very hot, the early mornings and late nights are more bearable. Which means there is an end in sight for this oppressing heat. 

Looking Around The House ~

It's a bit of a wreck right now. Mostly cluttered because of the photos everywhere but it's also things like the kitchen counters being dirty, kitchen desk being cluttered, recycling piling up and etc. The girls and I need to do a quick clean up this afternoon. 

From the Camera ~ 

Hayley and her first day 'back to school'. She loves she can listen to her music while doing school work. 


From The Blog ~

It was another very slow week of blogging. But I did get last week's Grocery Budget and Meals Ate post up. 

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Grocery Spending and Meals Ate: We went way over budget

Good evening. I the first week of back to school is already over. This consistent getting up at 6am five days a week is kicking my arse. I am not now, nor never been, a morning person and these early morning wake-ups are the worst part of the school year for me. 

I think the fact I've been so flipping tired is why I have spent way more this week on groceries then I should have. 

My monthly budget is $600 to $650, this includes all cleaning supplies, toiletries, and dog supplies. I'm feeding two adults and two kids (16/12). 

Altogether we spent: $274.36

I forgot to take a picture of the groceries we purchased. We got things like orange juice, cherries, strawberries, taco soup makings, lots of cheese and ham, so much milk, ground beef and more. 

We have gone through a lot of cherries and orange juice in the last two weeks. 

Our Menu This Week

I sucked at taking pictures this week, not only did I miss the grocery haul but I took very little pictures of the meals we had. I'd always think about it just after we'd eaten or even the next morning. What can I say, I don't function well when tired. 
Sunday ~ We had steak, sweet potatoes, and roasted squash. (We bought up <>a lot of steaks a few months ago when it was on an amazing sale at our local grocer's and we are still eating through it.)
Monday ~ Blackened Shrimp Tacos with corn

Tuesday ~  Cabbage Spaghetti



Wednesday ~ We all had different leftovers and I think I had chicken nuggets. I remember it was an easy night because it had been a really busy day. 

Thursday ~ BBQ drumsticks and roasted red potatoes

Friday ~ Little Ceaser's Pizza for the girls and taco soup for me and Mike




Saturday ~ I think tonight we are going to have oven-baked chicken strips, rice with gravy and asparagus. 


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Happy Homemaker Monday ~ Week of August 12

Good morning! I'm actually awake and chipper this morning, something a little unusual for me. I'm very much a night owl and sleep in kind of gal so to get up around 6:45, stay up, and still be in a good mood, well that's something to celebrate.

We had a good weekend. It was hot as can be, so outside of a small trip to get school supplies for Kyla, we hid indoors all weekend. Which I've loved because Mike finally decided to give it a go and let both of my fur babies inside full time. I've had so much fun in the last few days watching these two and especially watching Friday. She's never been inside for more than 10-15 minutes before, it's been a blast watching her get used to the house noises and watching her conquer her fear of the stairs.

And now it's time for this week's Happy Homemaker Monday with Sandra from Diary of A Stay at Home Mom.


The Weather:

It's hot...again. Like really hot. Our heat index is running between 110-115. Ugh. I'm so over this.


On My Breakfast Plate:

 Nothing yet, I haven't decided if Kyla and I are going to swing by the donut shop or if I'm going to be good and just the last of the fruit salad.

Right Now I Am:

Trying to get this post completely done before we have to leave for a doctor's appointment. I have 26 minutes... wish me luck! *I Finished with 4 minutes to spare.. woo-hoo!*

On My Reading Pile:

The Book Woman of Troublesome Creek by Kim Michele Richardson

I'm really enjoying this book. It's about the hill folks of Kentucky during the final months of the Great Depression. The main character is what they call a Bluet and is based on a real family, the Fugates, who had blue skin due to genetics and geography.

It's an amazing story of resilience in the face of persecution, bigotry, impossible odds and the harsh life of the hills people in Kentucky.

The TV I Watched This Weekend:

I finally finished up Bates Motel. Loved it!  Mike and I also watched one episode of Jessica Jones, one more to go and we will be done with the series.

On The TV This Week:

I'm rewatching Gilmore Girls.  Mike and I plan on finishing Jessica Jones also. Other than that I'm not really sure what I'll be watching.

Meal Options This Week:
  • Shrimp Tacos
  • BBQ Drumsticks
  • Breakfast Casserole

On My To-Do List:
  • Start school this week with Hayley
  • Hair appointment with my mom on Tuesday
  • Wash Grandpa's comforter
  • Drop off books for donation
  • Continue going through cookbooks
  • Normal house chores
My Hobby For The Week:

I'm taking a small break from crocheting to work on getting Mike's family photo's sorted, scanned, and put away. I made it through 1982 over the weekend, hoping to get through 1985 by the end of the week.

Looking Forward To:

The routine that comes with having school in session. I love the freedom of summer but I always welcome the daily routine of the school year.

Looking Around The House:

It's in pretty decent shape. I've been keeping on top of the cleaning. The floors will have to be vacuumed today because of the pet hair but that's really the only thing that needs to be done.

From The Camera:


Even Mike is enjoying the dogs, though he'll never admit it lol. 

What I'm Wearing Today:

Jean shorts and one of my favorite owl shirts.


From The Blog:

August Goals: One Month Till Summer

Raising A Child With Retinitis Pigmentosa ~ The Diagnosis

Grocery Spending and Meals Ate Week of Aug 5


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Grocery Spending and Meals Ate

Can you believe it's Saturday? The first week of August is near to an end. I've had a really good week. This was the first week with Kyla back full time after the summer break and it was great having her home. Although I've had to readjust to her presence and the way it affects my groceries. If you've followed me on Instagram you saw how she decimated the orange juice and cherries in under 24 hours. Still, it's so nice to hear her moving around the house and to be able to get all the hugs I want.

I also managed to stick to a decent grocery budget this week. We ate out a bit more than we had intended, a total of three nights. Two of the eat outs happened because we had spent hours in the woods riding our new 4-wheelers and by the time we got back into town we were all ravenous and it was too late to cook. I'll have to start planning slow cooker meals for days we go riding.  The third eat out was a family night out and was planned for.  The goal for next week is zero eating out. Wish me luck!

Instead of doing just one big monthly post of groceries and meals I'm going to break the post down into weekly post them I'll do a follow up at the end of the month. I was inspired by Kristen's (The Frugal Girl) What I Spent, What We Ate posts

My monthly budget is $600 to $650, this includes all cleaning supplies, toiletries, and dog supplies. I'm feeding two adults and two kids (16/12). 

August 4-10 spending = $257.39


I made a two to three trips to Walmart this week to get groceries. I'm a little over what I need to average weekly to stay on budget but I should be able to trim it down over the rest of the month.


Our Menu from the Week

Sunday ~ We spent the day riding on the local Wildlife Management Area's year-round trails and didn't get back into town late so we stopped off at McAlister's for some sandwiches.

Monday ~ We spent another day on the 4-wheelers, this time at our hunting lease. Once again we swung through McAlister's on the way home.

Our hunting blind on our new hunting lease. 

Tuesday ~ Roasted Leg of Lamb, roasted squash and sweet potatoes


Wednesday ~ Creamy Beef and Onions over rice with mixed vegetables.


Thursday ~ Oven cooked hamburgers, baked beans, shells-n-cheese

Friday ~ Longhorn Steakhouse, I had a wonderful 6oz steak with their parmesan creamed spinach. I could eat pounds of that dish. My next goal is to start making it at home.


Saturday ~ It's an easy night food-wise. We are munching on leftover pizza and Rotel dip with beef while we all relax and hide inside to get away from the crazy heat.






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Raising a Child with Retinitis Pigmentosa ~The Diagnosis

*Over the next few weeks I'm going to tell our family's journey of raising a child with a degenerative eye disease to raise awareness of RP and to let those who are going through their own trials and tribulations know they aren't alone.*

Two years ago I took Kyla in for her yearly eye exam. She was excited to get new frames for school and already thinking about the next year when she would be old enough to get her drivers permit. It was a really good day, we were laughing and enjoying hanging out together.



That day changed everything for us. 

Her optometrist saw something during the exam that looked a bit funky in the back of her retina. Not having the correct equipment to really give it a good check he sent us to a local retina specialist. From there we bounced to two other specialists before finding a third specialist that we liked and trusted. It took six months, lots of tears, stress and so much heartache to get to a point where we could begin to cope with the magnitude of the problem Kyla was now facing.

We knew from the moment her original optometrist saw something that Kyla had inherited her father's eye condition, a rare eye disease called retinitis pigmentosa also known as RP.  We'd always hoped and prayed that it would skip her but God had other plans.

So what is retinitis pigmentosa (RP)?

RP is a rare inheritable genetic eye disease that causes retinal degeneration for which there is no cure and very little treatment. Early symptoms include night blindness and a loss of clarity and even color. As the disease progresses there is gradual vision loss starting with the peripheral vision. For example, in her biological dad's case, he only has about 10% of his vision left.

This is a good representation of what we see vs what he can see.


Scary huh.

He's actually lucky in one way though, unlike Kyla he has perfect central vision as long as he doesn't have any swelling. Kyla, unfortunately, has always needed glasses so the impact on her vision has been more severe from the very beginning. Luckily, for now, Kyla's peripheral vision loss is not as severe as the image above but over time it will be.

Eventually, RP leads to diminished or complete loss of central vision. In most cases, this is caused by macular edema. Macular edema is a build of fluid that causes swelling in the macula (a pigmented section near the center of the retina).

On the left is a normal macula. On the right is a swollen macula. Kyla's looks very similar in both eyes.

Getting diagnosed

To get her diagnosed with RP was a very long stressful process. No one wanted to take our word for it, even though her father has RP, which meant that the likelihood of her contracting it was huge. The first specialist we brought her to sent us to another one an hour away because he wanted a better look at her the cones in her eyes. (Cones are what help your center vision remain sharp and process color). The second specialist sent us to a third because the machine he used to see the cones was not working.

Keeping count? That's a total of four eye doctors (1 optometrist and 3 retina specialist) all within a six-month time span.

The third specialist put us through hell. He absolutely refused to believe it could be RP despite a family history of RP and ordered her to have a spinal tap to rule out other issues, like brain tumors and such. I stupidly went along, I guess because I was still hoping and praying that it could be anything else but RP.

It was a hellish experience. What was supposed to be an easy procedure took twice as long because they couldn't find the fluid pocket on her spine. We ended up staying two and a half days at the hospital. My poor baby was terrified and confused.

When all the tests came back negative I thought that would be the end of it. He begrudgingly started treating her for the swelling in her eyes but still questioned the cause of the swelling. We saw him every few months for a little over a year. Each time he had to be reminded he had already ordered a spinal tap and that yes there was a family history of RP.

We finally reached our breaking point and tried going back to the original retina specialist (the second specialist kept pushing onto the third) only for him to discount the pain Kyla was feeling from the swelling. He swore up and down that RP doesn't hurt.

I can't begin to express how frustrated we were. Here we were dealing with a disease that we knew was going to rob our precious daughter of her eyesight and who was in pain but no one would listen to her or believe what was going on. We finally found out that she has some calcium build up on her optic nerve that's probably been there since birth and while it in itself isn't painful when her swelling is high it presses on it and causes slight pain.

Finally, after a very heated conversation with her current specialists, we reached out to our family doctor. This woman has known Mike since he was a little one and while she isn't anywhere near qualified to deal with issues like this we knew she could help point us in the right direction.

With her help, we found a fourth specialist in New Orleans.  We made the nine-hour drive to see her. It was the best experience we had since this whole ordeal started. She immediately confirmed that yes it was RP, she was in shock that Kyla had been put through a spinal tap over it, and was very confused as to why the 3rd specialist was being so obtuse over it all.

Treatment 

As I mentioned earlier there is no cure for RP. They have started a trail on a genetic cure using stem cell research. There are two specific genes that cause the genetic mutation of RP, the trial cure they are working on is on the more common gene of the two and heartbreakingly Kyla has the rarer of the two genes.

So with no cure in sight, the only treatment options center around the macular edema she has. The hope is the doctors can get the swelling down enough that she can lead a normal life for many years. As long as her peripheral vision continues to hold she won't completely lose much vision.

For now, she is on two eye drops and one set of pills.

Over the last couple of years, she's had her pills increased and decreased and her eye drops changed back and forth as the doctors try to find the right combination to help the swelling.

It's an ongoing battle, sometimes the swelling goes down and at other times it goes up. At the time of this post, her swelling has gone done for the first time in almost a year.  We can only hope and pray that it contiunes to go down and remain that way.

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