Posted in Adoption, Budgeting, Couponing, Everyday, Health, Homeschooling, Inspirational Thoughts, Marriage, Medical, Once a Month Cooking, Organization, Saving Money, Truth and Honesty

Operation “Get Life Together”

Operation “Get Life Together” is underway.  Here is a bit of what all has been going on the last week or two…..

  • Scheduled:  Dental appointment!  This is HUGE because I do not like the dentist, but my teeth do not like me.  It is what it is.  I have had a toothache for a while and because I CHOSE not to do anything about it (excuses:  time, money, don’t want too, doesn’t hurt that bad, blah blah blah), I now have 2 choices…1) get it pulled (insurance pays) or 2) have a root canal (insurance DOES NOT pay).  I also have to have a wisdom tooth out and some cavities to be filled.  As good as I am brushing, my mouth has always been full of cavities (maybe its genes maybe it is lots o candy).  Anyhow, I have my appointment made for my extraction or root canal.  I got them cleaned.  I also have 2 other appointments I need to make and then I will be caught up with my mouth!  Yay me!  And because I’m awesome, I went ahead and scheduled 5 of my 7 kids an appointment for their teeth to be cleaned.  Yes, I’m a rockstar, I know.
  • Scheduled:  Mammogram!  Girls…take care of your boobies!!!!!!!!!!!!  Breast Cancer is curable if it is caught early!  Now that I’ve said that, I will say that it has been 5 years since I had my last one (practice what you preach, I know).  It was also scheduled for today….which I had to cancel because I didn’t want to take the 3 little boys to this appointment and I had no one else to watch them.  I did reschedule for the week after next. I will be keeping that one!
  • Scheduled:  Papsmear!  Girls…..take care of your girly bits!!!!!!!!!  Is it fun?  Heck no.  Is it necessary?  YES!  I did go, but to my chagrin, I was late and I had started my period.  Good times were had by all.  The nurse and doctor sat down with me and we discussed life, my body, what the problems were, etc.  We have a game plan and I have a new appointment on the 25th of August.  I will be getting my bloodwork done (haven’t done that in about 3 years), I will be doing a urine test, an ultrasound on my insides, a hysteroscopy (they scrape the inside of your uterus) and a papsmear.  Getting it all done in one day (I may throw in a tattoo for good measures cause it is right across the street).  Once all of this is done and the results come in, I will be getting a hysterectomy, a bladder sling, and my girl parts fixed.  I am stoked.
  • Scheduled:  Hunter’s OMS follow up appointment and his Pediatric Opthamology appointment.
  • Need to schedule:  eyeballs for all.
  • I have begun working on our ZERO based budget plan and will do a follow up of that when Big Daddy and I sit down and write it all out.
  • We have discussed our debt and how we are getting out of it.  We are on the same page.
  • I have *not* been to the gym yet.
  • I have a goal of getting back into the swing of going to church on Wednesday nights.
  • I have begun a “for me” project…more to come on that.
  • I rocked the freezer meals.  I went and bought our groceries back around a month ago and we still have a good month left of freezer meals….it will last us almost 2 mths!  We have only had to go to the grocery one time (for lunch items and some breakfast stuff).  I spent about $550 on that July trip and we are still going strong.
  • Get my freezer meal ideas on paper
  • Cleaned my room!
  • Organized the laundry room
  • Organized/cleaned the garage
  • Made my purse emergency kit
  • Made my van emergency kit

I’m rocking it all out.  If you would like any info on organization, cleaning, the kits I’ve made, meal planning, etc….drop me a comment below.  I’m considering doing a video on some of these things to help with those who are visual, like me LOL

Posted in Adoption, Health, Medical

Going the Extra Mile

Post includes affiliate links.

This past week…..Hunter had his second round of Rituximab.  His first round was 2 weeks prior and it did not yield the results that we had hoped it would yield.  We did not see Dr. Sweeney (or any doctor for that matter) during that first round.  This time, however, we saw Dr. Sweeney, Dr. Bhalla, and a couple of students or interns….not sure…they did not speak.

I was able to ask many questions to Dr. Sweeney.  I felt like I was heard and he answered in a way that did not make me feel stupid, but in a way that I could understand.  He has a heart for children.  Any single man who knows the theme songs to ALL the disney movies and ALL the characters of each of those movies, is a man who is in tune with his audience of kiddoes.

I understood that we would know if this course of treatment was going to work within the next two weeks.  Hunter still has residual steroids in his system, as well as, IVIg.  In two weeks, though, all of that should be out of his system and all remaining B cells should be killed off by this last Rituximab treatment.  Then….we will either see improvement (aka remission) or we will need to rethink the course of action that we need to take.

In the meantime….we know his immune system is comprised.  To help with that, when we are out in public or around sick people…I went on the hunt for some face masks for children.  I could not find any.  I did get a few adult sized ones from my son’s orthodontist, but nothing that would fit his face.  I finally went to my “go to” place….Amazon.  Oh….I love amazon.  I found what I was looking for and they work perfectly (though he hates them).  CHILD’S FACE MASKS

My next course of action was to help ease his anxiety about going to the hospital.  Thanks to tiny veins and inexperienced nurses….he has been poked/prodded/laid on/man handled until I just about went all Hulk on them.  Then…we met the IV team.  Oh.  My.  Stars.  Let me just tell you….they are all angels sent from heaven.

I found this and let me just tell you….he looks adorable. A friend is going to embroider his name and “OMS Specialist” on it for me. It did not break the bank and it was on prime, so I got free shipping.

Maybe I went overboard….maybe I am coddling him. He is 3. He is my baby. He did not ask for any of this to happen and frankly…..at this point….within reason….the child will get whatever he needs to help him through this process.

Posted in Adoption, Everyday, Giveaway, Inspirational Thoughts, Medical, My Lady

Nichole Nordeman Review and Giveaway

NICHOLE NORDEMAN “EVERY MILE MATTERED” CD Review & Giveaway

Every Mile Mattered

With life getting in the way of …. well …. life …. it is nice to have a respite of sorts.  Music is my respite.  I’ve been making long long LONG drives to Louisville, more times than not.  My co-pilot is always wanting MORE music.  So, I play more music.  This has been on loop in my van.  When you go through life with a child who has OMS and the uncertainty of things…it is nice to be certain of one thing.

GOD IS GOOD.

He is good ALL the time.  He is good on the days Hunter walks and He is good on the days Hunter cannot walk.  He is good when we are home.  He is good when we are getting chemo.

GOD IS GOOD.

Take some time….enjoy your surroundings….listen to some music.  Let Christ soothe your soul.

I will be drawing a winner for this giveaway on July 26, 2017.  To enter, simply “like” or “comment” on this post or any social media post (you can find links to those on the sidebar to the right).

 SOCIAL – CORNER 

Official website – http://nicholenordeman.com

Buy links at:

ITunes http://capcmg.me/emm?IQid=b 

Spotify http://capcmg.me/emm.sp

Amazon http://capcmg.me/emm.am)

  • You can also PREORDER her new book “SLOW DOWN”, which is due out in August!
  • Please check out her BLOG and be sure and sign up for her newsletter!

 

 

Assets can be found here:  https://www.dropbox.com/sh/9v1j23tn5imqoj9/AACkje8YNZWxOiFVGm-RUClIa?dl=0

Check out Nichole’s blog  http://nicholenordeman.com and sign up for newsletters!

Posted in Adoption, Health, Inspirational Thoughts, Medical, Truth and Honesty

The Rogue Zebra Has Been Caught and Named

After almost 2 weeks of being in the hospital and having every single test run on him, we were beginning to feel the effects.  I was blessed by so much.  We had great nurses, attentive doctors…my sister arranged for her friends to bring us food and snacks.   My niece came visited, gave me breaks, brought food and toys.  My daughter came up and brought me coke and toys for the baby.  My uncle’s wife came bearing TONS of food and toys for Hunter.  I was blessed.  We continue to be blessed BUT we wanted a diagnosis.  We wanted answers.

Why was he shaking so violently?

Why were his eyes twitching all over?

Why is he sleeping so much/not sleeping at all?

Why couldn’t he walk?

Why did he scream when I stood him up?

Was he in pain?

Why couldn’t he sit up?

Why did he lean to the left, so bad, that I had to barricade him in?

Why couldn’t he chew/swallow?

Why?  Why?  Why?

I got him in the floor and we went for our daily “let’s make our legs work” walks around the nurses station.  While we were walking, we saw Dr. Sweeney and his team powwowing about our case.  I told them all not to talk to him or make direct eye contact because now, he was terrified of all people in scrubs, with white coats, or stethoscopes.  Everyone just kept on talking and while they were talking, they were watching. We had to walk in between the doctors to get through, so it gave everyone a great idea of who he is progressing or regressing.

Hunter noticed Dr. Sweeney and he stopped and spoke to him.  He told him that he liked him and he needed to come and visit him sometime (cue heart melting)….it took him a while to get that sentence out because his voice quivers and he has to really think about his words before they come out of his mouth.  Dr. Sweeney said that he was on the way and by the time we got to our room, he would be right behind us.

So, we headed back to our room.  We made it to the chairs outside of our room because when we approached our door…he began to cry saying he wanted to go home and not go in there anymore.  Broke my heart.  I didn’t know what to tell him.  We parked outside the room and watched the people walk by to help ease him.

Dr. Sweeney and his crew came up and I told him of his regressions and that by the third high dose steroid, he had stopped tremor-ing so badly, but that he is sort of stalled.  He still struggles with walking and his eyes were everywhere.  With his symptoms list, with his regressions, with his body’s response to the steroids…Dr. Sweeney was completely confidant in diagnosing him.  He said that the entire neuro team had gotten together, that morning, and reviewed everything, and collectively, they came up with this diagnosis.

Hunter has Opsoclonus Myoclonus Syndrome or Dancing Eyes Dancing Feet Syndrome. These are a good set of videos as to how Hunter is right now.  It documents the truncal ataxia, the walking, the rages, fine and gross motor skills.  Click HERE to view them all, if you are interested.  It is INCREDIBLY rare.  There is not enough known about it to have a cure, so this is something he will have for the rest of his life.

3 Ways OMS Can Occur

  • It could have been caused by a neuroblastoma (cancer) that his body recognized.  Once it is recognized as being “foreign”, the body produces B-cells that violently attack the cancer so that it is reabsorbed in the body.  Those “aggressive” B-cells do not just die off after the cancer is reabsorbed…it begins attacking the brain at the cerebellum (the part of the brain that controls your body movement) and the frontal lobe (which controls your moods).
  • Idiopathic (meaning it came from a virus)
  • It is a precursor to neuroblastoma (cancer) that can show up with the next few years.

We will be doing MRIs, CT scans, blood work, PET scans and urinalysis often to make sure there is not minute cancer hanging out.  We have had 8 rounds of high dose steroids, 1 round of IVIg immunotherapy, and will have a total of 3 rounds of Rituximab.

So far…we have seen little change.  We have good days and bad days.  We are all adjusting to our new normal and learning life.  I’m thankful to the doctors who heard me and were proactive in finding his diagnosis.  My prayer, of course, is for complete healing.

We are going to try and raise money, at some point, for a therapy dog for him.  We are wanting one for his walker/wheelchair needs and for his anxiety and PTSD in regards to doctors and hospitals.

If you have any questions, or if you child suffers from OMS, do not hesitate to comment here, or you can find me on facebook, instagram, twitter, and pinterest (all links are on the side bar).

Prayers are appreciated.  Fundraiser ideas are appreciated.  Thank you all for hanging in there and keeping up with this little series.  I will post more about this in the future.

 

 

Posted in Adoption, Health, Inspirational Thoughts, Medical, Truth and Honesty

Our Family, Friends, Church, and Community

During the last few weeks…we have seen our family, friends, church body, and community come together to bless our family in a very difficult time.  There is no way I can express how loved we feel and how blessed we are to have complete strangers stand in the gap for us through prayer, financial donations, building a ramp, providing suppers, providing groceries, carting kids around, buying necessities, and so much more.

We are, generally, the givers and doers…the hands and feet of Jesus…so this is all new to us.  This is not the path we would have chosen for our family, but it is what it is and I will not love Jesus any less for this trial we are walking through.  I do not say “why us”…I say “why not us.”   Who better to walk this path than our family.  We are being taught great things.  We are being blessed right and left.

We are humbled by the graciousness and love.  We would love for this illness to just be a season of our lives, but it may be our new way of normal.  We hope that, one day, when we get used to our new life, that we will be able to serve others in the way we have been served.

 

Here is part of the Marshall County Ramp Ministry Team.  What a blessing.

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And here is Ms. Marcella founder of Marcella’s Kitchen.  She and her team of volunteers are an amazing blessing to our family.

Posted in Adoption, Everyday, Medical

Spotting the Zebra Pt 3

Dr. Ehert has been so good to us.  So thorough and she even fielded questions from my sister, Hunter’s grandma.  She really wants us to be discharged to Frazier Rehab, across the street, for an indefinite amount of time.  I just want to go home…even for just a night.  I needed to see my kids, my kids needed to see me and Hunter.  I needed my shower, my bed…just for a few hours.  I declined the offer to go to Frazier and I set up Speech (he had lost some of his speech), Occupational therapy, and physical therapy.  If the doctors were not satisfied with his progress, then we would go.

The Hospitalist said that there were really no more tests to run and that we could go home because A) they had no clue what he had B) there were literally no more tests to run C) I begged.  So, without a diagnosis…..we hustled and got out of the that hospital.  We drove for about 3 hrs and then my phone rang. It was Dr. Ehert.  She said that we left without seeing her.  I explained that we saw Dr. Bhalla (her fellow) and that she cleared us to go.

Then….there was a pause……………

She asked me how far out of Louisville we were.  I told her that I was about 3 hrs from there and a 1/2 hour from home.  She explained to me, so gingerly, that one of his test (1 of about 200) came back positive and that we needed to turn around and get back up there to start steriods.  I asked her how urgent it was and if I could just go home for a bit and she was hesitant.  She said the sooner they start it, the sooner he could get better.  The treatment was to last for 5 days.  She never mentioned a diagnosis but there was definite concern in her voice.  I told her that I was going home, getting a shower, seeing my kids and sleeping in my own bed. I would be happy to leave in the morning and as long as his life was not in danger…that is what I was going to do.  I had to mentally prepare myself to be up there for that long, again.

We got home and it was sweet.  He was so excited to see everyone and everyone was excited to see him.  I jumped in the shower and blew off all that nasty hospital funk.  It was glorious.  I slept so well that night.  About 9 am the next morning, we headed out again.  I felt more prepared.  I knew what to pack and was mentally ready.  We got up there and we were able to bypass the ER and go to quick admitting.  They were expecting us.  We met up with the beloved IV team again and we got an IV started for him and for Superman 🙂  They told me that they were going to give him high doses of steroids for the next 5 days.

Steroids is supposed to make you eat and make you a bit grouchy….I could not get this child to eat anything.  He wouldn’t even eat a cookie.  He did sleep some but it was restless.  After 3 doses of steroids, he was able to stand on his own and  maybe take a step or two.  His tremors lessened.  He voice was not as shaky, but his eyes were everywhere!

Early the next morning, at 1 am, I had finally shut my eyes for a moment and in comes the nurse.  She said that I had a phone call.  My thoughts are “who on earth is calling me, on a nurses cellphone, at 1 am in the morning.”  It was Dr. Puri.  He is a pediatric neurologist and he was calling me from Myrtle Beach.  I asked him why he was calling me while he was on vacation and he said that he wanted to ease my nerves.  He is a phenomenal doctor.  He is well loved, well educated, and he has seen some bizarre things.  He said that there was no worry of MS, which is what I thought he might have (in my medical mind LOL).  He had all the symptoms of that.  He said because no lesions were found, anywhere, that it is highly unlikely that he has this.  He said he believed it to be another autoimmune disease and he assured me that they, as a team, would figure it out.

In comes Dr. Sweeney.  I came close to dismissing him because he looked the age of my son, so I thought that he was a youth volunteer.  He said that the team had assembled and discussed our case.  They wanted to run more tests, but felt pretty confident in the diagnosis.  He basically kicked every other doctor off the case because this was strictly a neuro case and there was no need for a bunch of drs telling me their opinions and interrupting our day when they didn’t need too.  We did another MRI of his brain and spine (with contrast) and another CT scan of his chest, abdomen, and pelvic region.  They knew what they were looking for.  We did a follow up urine test and they “attempted” to draw blood while he was asleep…6 sticks later, they still could not get enough blood.  I put my foot down, at that point and told them that if ANY IVs or blood draws were necessary….ONLY the IV team would do this for me.

Once all these tests came back (normal, I might add)…Dr. Sweeney stopped the steroids (he had had 8 doses of it) and he started him on IVIg (immunotherapy) for about 6 1/2 hrs.  He said when that was finished we could go home.  There was nothing else for them to do or anymore tests, at the moment, that they could do.  I could do the same thing here as they could there.  They did want me to take him to Frazier for a couple of weeks.  I explained that we already had therapy and equipment in place and they were satisfied with that, for now.  We would readdress it when we came back for our follow up appointment.

Dr. Sweeney captured the rogue zebra…..in Pt 4.

 

 

 

 

 

Posted in Adoption, Couponing, Everyday, Health, Once a Month Cooking, Organization, Recipes, Saving Money

Once a Month Cooking Menu

Recipes will follow but for now, this is what is on tap for me to cook for this month (actually a month and a half because we have some stuff already put in the freezer).

This list will be for Breakfast, some Lunches, Dinners and sides that will go from July 10-August 31.  For lunch…we eat leftovers regularly, so I’m not going to break the bank buying stuff to make some gourmet lunches when my kids will happily gnaw on what is left in the fridge.

I WILL NOT cook on Sundays, so that takes out 7 days.  Also, on Thursdays (with the exception of July 31 which is Daniel’s 13th bday and I will cook whatever he wants) is ALWAYS pizza night…so that is 7 days worth of Thursdays.  The other date to note is August 24th, which is Jude’s 11th bday . I can already tell you that he wants Ethiopian food.

BREAKFAST

Pancakes (made from scratch, not from bisquick….we are all about saving money)

French Bread

Zucchini Muffins

Banana Muffins

Carrot Muffins

Granola Bars

Granola

Fruit bars

McMuffins

Omelet Cups

Breakfast Cookies

Breakfast burritos

Lunch

Meat and Cheese sandwiches (turkey, ham, roast beef, bologna, fried bologna….provolone, American, swiss, cheddar)

Burritos

Quesadillas

Supper

Homemade Pizza x 7

Spinach, Ricotta and beef Enchiladas on a bed of rice

Chicken & Broccoli, Scalloped Potatoes, Green bean casserole

Beef Stroganoff

Mexican Casserole

Mexican Lasagna

Mexican, Ricotta, and Spinach Lasagna

Baked Pasta, Garlic Bread, Salad

Burgers/Hotdogs/Fries x 5

Tacos, Refried Beans, Rice x 3

Chicken stuffed cheese/spinach wrapped in bacon, Roasted Potatoes Sweet peas

Pork Chops, Hashbrown Casserole, Corn, Lima Beans

Chicken Cordon Bleu, Cream Corn, Baked Potato

Cheeseburger Casserole, Mashed Potatoes, Sweet peas

Chicken Alfredo, salad, bread

Round Steak with Mushroom Sauce, Broccoli and Bacon, Mashed Potatoes

Philly Cheesesteaks, Homemade fries

Greek Marinated Chicken, Fried Zucchini, Rice

Pork Roast with Feta and Mushrooms, Mashed Potatoes, Sweet peas

Baked Chicken, Cream Corn, Cauliflower and Broccoli Au Gratin

Beef and Broccoli, Fried Cauliflower rice

Garlic Cheddar Chicken, Mac and cheese, Roasted potatoes, sweet peas

Tater Tot Casserole, Green Bean Casserole, Corn

Pork Roast, Mashed Potatoes, Lima Beans, Asparagus/Feta

Ethiopian

Spaghetti, French Bread, Salad

Lasagna, Garlic Knots, Salad x 2

Breakfast (Sausage and egg casserole, bacon, biscuits, pancakes)

Soups x 7:

  • Stuffed Pepper Soup and Chili
  • Vegetable Beef and Cheeseburger
  • Chicken Noodle and Tomato
  • Tortellini and Zuppa Toscana
  • Broccoli and Potato
  • Enchilada and Beef Stew
  • Chili and Chicken Noodle
  • xtra chili

Roast/Potatoes, Asparagus and feta, Green Beans, Mac and cheese x 2

 

***Recipes to come***

 

 

 

 

Posted in Adoption, Everyday, Health, Medical

Our Zebra in Pictures

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Loving on Papaw
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Loving on Mamaw
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Visits from Tora and Healther
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Playing with legos
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48 hr. EEG
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If the prophecy and phone call enough. Daddy made me this. It is laying on my Granny’s quilt.
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Superheroes from all my friends at home
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We are going home…briefly.
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Therapy Dog, Mercy
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Heather let me play
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Watching another movie
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Happy time with Heather
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Playing with Tora
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Over. It.
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McQueen
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1st Movie with Kaleigh and Jack
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Hanging out with Papa.
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Looking Stylish in His Glasses