The Crazy Continues

I had very much intended to write a post in May. Sadly I missed that deadly. It feels as if May blew up in my face.
May 1st- My laptop died and we had to run out and by a new one. I am now using Windows 8. I am not a fan! Thankfully Windows 10 should be launching soon and I qualify for the free up grade.
May 2nd- The BAKE! The Baby And Kids Expo was my first time working the Juice Plus+ table. I spent all day talking to people about what Juice Plus+ is and how it can help the body. Squeaker stayed with Trey all day. A little scary for me but we all made it just fine.
May 5th- I finally breakdown and call the sleep doctor. For that 2-3 weeks prior Squeaker had been waking up at 12-1am and being awake for 2-3 hours. Yes folks that was as miserable as it sounds. We tried everything we could think of and it wasn't helping. Which meant it was time to call the doctor. The doctor thought about it for a day and then changed her Clonodine. It's now 1/2 Tab in the afternoon, 1 Tab at bed and 1/2 Tab 4-5 hours later. The goal being to get Squeaker back to sleep as quickly as possible. Not only does it get her more sleep but it helps re-train her brain. So far it's been going well. It's been a month and already she doesn't need that third dose every night.
May 7th- Left for Indiana. 7 HOUR DRIVE!!!! Stuck in traffic for 2.5 hours!!!
May 9th- The wedding! A sweet quiet little ceremony followed by a private luncheon. The full reception was planned for later when more of the family could come.
May 10th- Mother's Day. Drove to Nell and Jim's new house. It's wonderful to have them within 2
hours. We look forward to seeing them more often.
May 11th- Spent 3 hours re-writing my resume. And started applying for jobs close to my parents house. I'd already been applying in Alabama for 2 months with no luck. I figured it couldn't hurt.
May 15th- Started to get sick. Trey had already had flu symptoms for 2 days. Mine presented more as a sinus problem.
May 18th- Made it home in a normal 5 hours. Wahoo!
May 20th- Took Trey to get have some medical tests done. We've been waiting months for these tests.
May 21st- Full blown sinus infection and swollen lymph-nods, even took a nap by myself. What a gift.
May 22nd- I was notified of a job interview back in Indiana. For the following Thursday.
May 23rd- Very busy day and forgot it was my brother's birthday. #awfulsister
May 25th- Memorial Day. Our plumbing stopped working. The kitchen sick, the dishwasher, the laundry were all not draining properly. Just dandy. The day was so crazy we forgot to do Squeaker's infusion.
May 26th- Plumbing was fixed and I was able to start doing laundry so I could pack for Squeaker and I to go back up north. Trey was going to stay behind to take care of the animals.
May 27th- Took Trey to the doctor because he still wasn't better and his results were in. All normal... annoying. Had some lunch, drove Trey home and then Squeaker and I hit the road. 8 hours later we made it.
May 28th- Have my interview. It's actually a direct hire, so pretty much if you show up you are hired. So I have a job!!! Wahoo! Means we are moving. I don't know when the job starts yet so the moving plans are still up in the air.
May 31st- Drive around the area to see what places are safe to live.

Can you see why I feel like May blew up?? It's a little nuts.

As for June so far the crazy continues

June 1st- I was getting ready to go home when I get an e-mail to go interview for an even better job in Indiana. Wahoo! I decide to stay one more day.
June 2nd- Have the interview, pack the car, drive home, mow the lawn, pull some weeds, make dinner and do infusion for Squeaker.
June 3rd- Get an e-mail from job #1 that training starts June 10th. I have to option of waiting until the next training class but it's not scheduled yet. I became physically ill thinking about trying to move in a week. I passed on this training. 5 minutes after I decided to pass I get a phone call from job #2. This is a better job for our family. Better hours, more steady work, I wouldn't be on my feet all day. And it would allow me work around Squeaker's appointments. Well, I was offered the job. I do have to be up north to sign some
paperwork on June 10th, but the training doesn't start until July 26th. Plenty of time to pack and move.

Now we are busy packing the house, stripping wall paper, and making plans to move. Life is just a little nuts. But it's looking pretty good.

Pure Crazy

I have to say I'm pretty impressed that it's been less than 30 days since my last post. It has just been so very crazy around here. I kept meaning to sit down and post things. Then I would get distracted with life or doing things. Like sewing a new dress for Squeaker. That's right I made that dress!! I'm proud of it. It has appliques, trim, hand beading, binding, an invisible zipper and it is fully lined! Yes dear friends I move truly moved into the world of being a seamstress. I can't design or pattern very well, but I sure can cut read and alter a pattern if needed. Oh happy day!

Squeaker has been pretty healthy. Sleep has started to go back to normal, when we can stay on schedule. The last couple weeks between doctors and travel we have missed a lot of naps. And it has been rough for all of us. Squeaker has been a pretty good trooper about it all but it is rough. This last Monday the tubing broke on Squeaker's infusion. By the time I got the pump stopped almost 2/3rds of her dose was gone. I talked with the pharmacy and they talked to the doctor. We decided since Squeaker has been healthy that we will forgo and extra infusion and just wait until next week. This morning Squeaker woke up sick-ish. Groggy, didn't want to get up for over an hour. She was pretty happy during the day but a stuffy nose and easy meltdowns but we survived. Squeaker will probably get sicker as the week goes on. If she gets too bad we may have to move infusion for this week to Sunday.

Trey is more stable but in his head he is still very dizzy. He has been wearing glasses that help block

certain types of light and hats to minimize the light that gets into his eyes. It seems to be helping a lot keeping the brain in check. Trey still walks with a cane, but relies on it less. We were up in Indiana for Spring Break and had a chance to try some acupuncture. It seemed to help too. It will be a while before we can go back. Yes there are acupuncture clinics where we live but they are more expensive. While we were visiting family we found out that not only did the short term disability get denied but Trey lost his job. We are working on a plan to stay here and have Trey finish is MBA. There just need to be a few ducks that line up for that plan to work. We know if our plan is right the Lord will help guide us.

Today was a wonderful southern spring day. We cleaned up some brush in the back yard and I mowed the lawn. Hopefully in the next week we can clean up the garden patch and get a garden planted. I swear the best way to treat stress, anxiety, and depression is service for others and gardening.

An Awesome Day

I have had an awesome today. Sure it had it's ups and downs, but as I sit down at the end of it I'm feeling great. What made it great? Well it's the little things.

1- A clean kitchen. I was able to get the dishwasher run and emptied. The kitchen cleaned, some beef cooked and frozen. Then I cooked dinner and cleaned the kitchen.

2- Laundry. I've been a little behind on laundry lately. I usually just do a load every day or two. So it never piles up. Well I feel behind. But with a day a of testing yesterday and doctors today I've just been focusing on getting the laundry clean. Once dry I'd just toss it in the tv room for folding later. Today I finished washing the laundry but getting it folded and put away!

3- Play time with Squeaker. The last few months with trying to take care of Trey and all his appointments I haven't had the energy to play with Squeaker as much as I used too. I feel pretty bad about it a lot of days. But I only have so much energy and when it comes to cooking dinner and playing I kind of need to make dinner. Today it was nice out I had decent energy so we opened the back door and played a game. 30 minutes of just her and me. No fussing, no meltdowns, just play. It was wonderful.

4- Picked up a book. There is a book series called Fablehaven. I have read the first two books, it's a five book series. When I was at the Library with Squeaker last week I saw the series on the shelves. And had the thought I should really finish it. Sadly Book 3 wasn't there, bummer. The librarians had it transferred and today I picked it up. Wahoo!!!

In all the craziness of the last few months I am so very glad to have and AWESOME DAY!!!

It's Just A Lot

Quick update and then I'm off to bed.

Trey has been in a specialized physical therapy program for 4 weeks now. And although he still feels like his brain is on the ocean he can walk in the house without a cane. Once out of the house he is supposed to use the cane because in less familiar surroundings you use more of your brain. We acquired a temporary Disabled Parking Permit for him. Especially when he has to drive himself to class. Yup Trey is still in grad school. We looked into pulling out for the semester but it was too late. It's been an adjustment in study habits but he is making it work. We have also started tracking calories, sodium, and sugar intake for the both of us. Not only is this helping us both stay on track about loosing weight but we can show all the doctors the sodium and sugar intake for Trey. Yes, they ask about that stuff.

Squeaker as you may have read is no longer squeaking. Looking back over that last few months though we have noticed she has been talking more. Sadly some of that talking is arguing and poor attitude. Hey she is 4 it was bound to happen. Sometimes it's kind of funny because she will try to take away our privileges when we don't do exactly as she asks. Sorry kiddo, that's just not how it works. Our biggest struggle has been when she gets hungry. Food can still be very painful for Squeaker so getting her to eat is a struggle. But if she doesn't eat oh my that's a horrible struggle. Trey and I have chosen our line in the sand and there were stay. We know it will get better and being a consistent parent is hard but we know it will pay off in the end.

As for me. Oh well I'm busy. If you didn't figure that out already. I am doing 99% of the driving, I try to entertain Squeaker daily so Trey can study. I try to keep laundry moving and cleaning done. I do the cooking, figure the calories, and pack up all the leftovers. I've also starting doing some testing site stuff to help earn a little extra money. Currently Trey is on short term disability insurance which is wonderful. But is getting to the point that it only pays 60% of his salary. I'm very happy it pays that, but it does leave us a little short every month. We have some savings but it won't last forever. I just figure if I can start now the longer the savings will last. I would love to pick up some work at home data entry. There are jobs out there but where Trey is not able to care for Squeaker, and do his rehab, I can only work during the night hours at home. In the future I may need to take a late night shift outside the home but we aren't there yet. Oh and to top it off I'm on day 3 of 5 of an antibiotic. I have a sinus and respiratory infection.

Which folks just proves how awesome my husband is. Trey has a lot going on. I know that chronic vertigo doesn't sound like much of a diagnosis but it is really hard to constantly feel like you are falling over. While I've been sick Trey has just been doing as much as he can. This weekend when he didn't have to study he's been letting me sleep. Since I still sit with Squeaker to put her to sleep he makes me warmed caramel milk and brings it to me. Then tells me "When she is asleep your bath will be ready." I mean honestly does a hubby get any better? He's just so awesome.

Well that's the update. I should get some shut eye. We see the Neurologist tomorrow afternoon. We aren't expecting much in the way of answers, but maybe a few ideas of what to do next or try would be nice.  So ya know, we'll see. :)

Another Challenge

Trey has been down and out, for about 3 months now. He will continue to be so for a quiet a while.

Through lots of doctors visits, testing, and resting we have learned that it is a neurological issue. Trey's brain is simply not dealing well with all the input the world gives it. He is suffering from
     For the last few months Trey has been stuck in a bed or in a recliner. He's played a lot of games, read books, and watched a lot of TV. He has started to walk with a cane and that has helped a lot. Which mean he isn't falling anymore and walking around the house isn't as tiring. He's still having to take it easy and limit his time out of the house or with certain activities. Right now the big energy suck is energy to go back to school this semester with two graduate classes. It's only been a week but so far so good. Since Trey hasn't been to work in a couple months I'm glad for him to have something to help test his limits without pushing too hard, since the classes are only a couple hours once a week. 
     As far as treatment goes week he starts a specialized physical therapy program for dizziness. Then in February he sees a neurologist. Hopefully by the time we see the neurologist we will have enough information from the therapist and from tracking daily activities that the doctor can help pin point issues. Or move directly in the testing and treatment phase instead of "try this" and "track this" phase.
     Gosh I'm tired....
headaches, fatigue, vertigo and dizziness. Yes vertigo and dizziness are two different symptoms, crazy the things you learn when you are at the doctors.

Universal Studios Orlando

Instead of trying to tell you about our great day at Universal Studios I'll let the pictures do the talking. Sadly the compression rate on the loader for blogger is really bad but you can still get the idea.

August 11, 2014

July

Alright here is the catch up. July was a fun even though Squeaker's breathing was anything but normal. We had lots of snoring, wheezing, and coughing. Squeaker spent the entire month on an extended course of steroids and anti-biotics. Some days were still pretty rough.

July 5th-- I took Squeaker to Home Depot for her usual Kids Class. Of course it was a lot of fun but it was also special. This one marked #12 in a row. That's right I managed to get Squeaker to an entire year of Home Depot's Kids Classes. Not only has it been great for Squeaker but I'm pretty proud I managed to never forget and keep going.

July 7th-- Our new diaper bag came in. It has Muppets on it, and Squeaker just loves it. Even though the bag is as big as she is, she still insists on carrying it around most of the time. I'm glad is has perfect size pockets to carry her epi pen.  It just happened to be a day we went black light mini golfing too. Another thing Squeaker just loves to do. I wish there was a more fans in that particular place but it works out okay.

July 16th and 17th-- Trey is finally feeling better at this point. For the two weeks before Trey had another round with Benign Paroxysmal Positional Vertigo (BPPV). So yup he had on going vertigo and nausea. It was rough for all but we made it work. Squeaker and I did out first Jamberry Pedi and Maicures. If you haven't heard of Jamberry yet I suggest you check it out. I'm not a super girly girl but from time to time I like having my nails done. The problem for me was the polish never seemed to hold very well. Jamberrys hold up to my crazy nails and they are much prettier than I could ever do on my own. Squeaker calls them "pretty nails." Squeaker was originally going to stay home from the party and I was going to get some mommy time but alas with Trey barely able to stand without falling over Squeaker went with me.

July 21st-25th-- INDIANA!!! Of course going to Indiana is always fun for us but this time was even
more so. Why? Because Nell, Bug, and Byrd were there too. Bug, Squeaker and Byrd all had a blast together. Blueberry picking, bowling, swimming, and learning to climb trees. Plus playing, running and doing what little girls do. I'll tell you all three of those
girls were tired at the end of each day. :) Sadly it was towards then end of the doses of steroids so they weren't as effective so Squeaker had some rough nights. It worked out okay. One morning after a particularly rough night I was trying to go rest my eyes and Squeaker asked if she could go get Grumpa. I could hear him upstairs working on breakfast so I said, "sure". Next thing I knew it was 2 hours later and I felt like I could leap tall buildings in a single bound. I was so grateful for the extra hands and entertainment for Squeaker.

July 29th-- Off to Birmingham we went. We saw the Pulmonologist and had to change one of
Squeakers inhalers since she still wasn't stable in her breathing. Also we had start doing albuterol before any "vigorous" activity lasting longer than 15 minutes. Especially the outdoors ones. This means I now carry and epi-pen and an inhaler with chamber and mask. I thought you were supposed to carry less as your kids got older? The big news of the day was Squeaker weighed in at 30lbs and measure 38 inches tall! Yes my dear friends my daughter can grow! Squeaker has also decided to start making silly faces half the time when I'm taking her picture. It's fun and frustrating. She tends to change her facial expression too quickly for me to catch good pictures.

Fake It Project- Sharpie Tie-Dye

This visit up north Squeaker was already on a strong antibiotic so I decided it was a great time see all the cousins. I know it sounds a little backwards but it does work for us. It turned out that only Lizzie, Brad and their kids were available. But with 5 kids 7 and under and all with special needs well it's not like we could just go to the park, or zoo, or whatever. It takes just a little more planning. We need some focus or a project to help in keeping the kids focused on positive things. That's how we keep the kids from getting into fights.

The plan was made to go out to Lizzie and Brad's house. With all the therapy stuff, play stuff, and a pool there was a lot to help keep the kids happy. And then I thought, what about a "Fake It" Project to help keep the kids focused. Something fun and enjoyable but super easy to put together.

Every so often I do what I call a "Fake It" Project. It's not a perfectly finished edges, the lines may not be straight, or it may just be unfinished. It may not be the best but it does the job. And then some day I may take the time to make it nice, pretty, and perfect. So it's Fake It until I Make it! :)

I found some light/heat blocking fabric at Joanns. Cut it up and hemmed it so it would hang on a curtain rod. But that wasn't very pretty, curtains in kids rooms should be fun. So I thought lets but something fun in front of the Light Blocking Fabric. Why not Sharpie Tie-Dye Curtains!!!


Materials Needed:
Cut, Washed, and Hemmed for Hanging Fabric
    ---We used White Muslin. I Zig-Zag stiched the edges to cut down on the raveling 
Sharpie Permeate Markers
    ---Sharpie brand work best. You can try fine and chisel tips. Extra fine point won't work.
91% Rubbing Alcohol
    ---We bought 3 32oz bottles and used 2 on about 8 yards if fabric
Spray Bottles
Cheap Shower Curtains
    ---Dollar Store ones work great
Masking Tape


Prep-
Clean off your table or work area. Outside works great since alcohol can be stinky. Lay down the shower curtains and tape them down. Then put your fabric down and tape down if you need too. Put the alcohol in the spray bottles.

Work-
Get out those sharpies out and start coloring! Big shapes and thick lines work best. And lots and lots of colors!!!
Once you are done coloring get ready to spray. You can spray in the same spot you colored or you can move it out to another table or grass. Just make sure it's a place you don't mind getting ink on, or cover it. We did it in the grass.
Now spray, spray, spray. You want to saturate the fabric with the alcohol. That will give the best run of the colors.
Then just leave it to dry.

To make sure the color is good and set toss it in the dryer for a few minutes. When you need to wash your project just wash on cold and dry.

It was a great project. All the kids (ranging from 7-2) enjoyed doing. The kids were super excited to have their own art work on the windows.

This style of Tie-Dye will work on pretty much any cotton fabric. Lizzie is planning on doing some t-shirts, and bags for the family. Last Christmas I did this treatment on homemade super hero capes, those were a hit too.

Progress

There are times when Squeaker's progress is lost on me. I am with her 99% of the day and night. Which is great for catching illnesses quickly but sometimes I miss the awesome strides that she is making.
Well last week we saw the Pulmonologist (Dr. Makris). We have not seen him for heavens 6 months I think? The last time we were at the office we saw one of his associates. But boy was the Dr. Makris was just thrilled with her overall progress. He couldn't believe how healthy she looked, how she talked to him and even followed him to another room to get a sticker. All things Squeaker was not doing the last time. Not to mention 27lbs and 36.5 inches (yup half and inch taller) is pretty good for Squeaker. Other great news was Squeaker is officially off the nebulizer except for illness or emergency. WAHOO! 3 years I've been waiting for that news. 3 YEARS!!! And poof it's all gone. I was doing a happy dance at that one.
We did talk about Squeaker sleep anxiety which is... um... just not going to go anywhere until we can

communicate with her. So here is to the next 4 years of crazy sleep! doh... Oh well I'd rather know. Dr. Makris agreed to keep Squeaker on the Clonodine to help her sleep so the whole process what so stressful for all of us. Oh oh oh, another cool thing is Squeaker is on Medically Mandated Naps. I mean every mother's dream right? My child is required to take a nap everyday. I even have the medicine to help her fall asleep. Now it may sound a little mean to make a 3 year old nap, but Squeaker is far from a normal 3 year old. She has hardly ever slept the appropriate amount for her age, and shows signs of sleep deprivation. Even if she didn't because of the immune issues Squeaker's system is constantly under attack, and sleep helps the body fight back. So the chronically sick need more sleep. Oh course I love the idea of nap time because I get to nap too. After keeping this kids odd hours 95% of the time I really need the sleep too.

Sub-Q infusion is going well. I am not comfortable doing the whole process by myself. That's right I stick my child, twice, every week. It's a little sick to say I'm proud of it but if I'm not proud or laugh at it I'll just cry. And well since it's not something I can change crying doesn't do a whole lot of good. Squeaker has gotten the hang of it too. She doesn't throw fits anymore she just whimpers and pleads for me to take it out before it's all done. I just give her whatever I can to make her more comfortable and say "As soon as it's done." It's rather heart breaking but again I have no choice. So I choose to just deal. At least by me doing the sticking and taking out we aren't dealing with fear and anxiety of other people. All Squeaker complains about is it hurting. She fights me a lot less than other other technician for anything she has had done. I hope it's because she knows that Mommy won't do anything without a purpose. That she can trust mommy to only to what she has to do.

As for the rest of the family. Trey is half way through is first semester of grad school and is

maintaining an A in both classes. It's been a little hard for Squeaker having daddy gone so much but she is adjusting. Well we both are, but we are having a good time finding balance. Trey is looking forward to being done with Calculus, so he can hurry up and forget it. Trey also started a weight lifting program, it's his way of trying to get fit. Whatever works.

Me? Oh well I mentioned the mommy time, working out, regular showers, projects. It's been nice. This week I saw the orthodontist for my check up. Things are going pretty well. Most of the major moving is done, now we are working on creating a nice arch and mid-line alignment. It will still be another year or so but it's been worth it. My last cleaning I had no cavities, no gingivitis, and they could floss without my gums inflaming or bleeding. And I am far from a great tooth brusher. Braces are making a great difference for me.

The braces have exacerbated a problem though. My 12 year old molars sit right up next to my jaw bone, always have. It's just how my crazy mouth was made. You should have seen the x-rays when my wisdom teeth thought about coming in. Anyway as my teeth have straightened and lengthened around my jaw one of my molars has been pushed even further up against my jaw. Which has cause the gum to be forced over the top of the tooth and inflame around it. Which leaves me chewing my own gum tissues. Yes folks that is as nasty as it sounds. So I saw an oral surgeon he would like to cut out the tissue shave off some of the jaw one and sew it all back up. He hopes that will be the fix. But he cannot give me a guarantee of long term results. I could have the same problem in as little another year. Joy oh joy. But being an awesome guy the surgeon decided since he cannot guarantee the work that he would not charge me. He really hopes it will be the fix I need but he'd hate for me to go through the expense just to have it find another treatment in a year or two. So I will be having surgery the first week of April. I'll admit I'm excited. This has been a bit of a problem since I was a teen and this last flare has been so bad I'm ready to try anything. The surgeon did give me an antibiotic to help calm the inflammation down and get rid of the infection. This infection is so strange all of a sudden I'll find some thing in the corner of my mouth and I'll spit it out and I'll think, "I didn't eat that?!" So strange. Oh well the worst will be over soon and then I have a shot at it being gone for good.

Holy Cow it's late. I need to catch some sleep.

Mommy Time

It is so easy to forget about life besides being a mom. Now there are times where yes we must sacrifice just about everything for our kids. I've been doing it for about 3 and half years now. But recently I've realized not only is it healthy for me have some "Me" time but Squeaker can use the time without mommy.

I have to admit this is not the first time I've tried to spend time regular time for myself. This is probably for 4th or 5th time I've made a go at it. You know what I learned all those tries? That having regular "Me" time takes just as much commitment and effort as taking care of Squeaker. I have to set a time, a little bit of planning and seize opportunities as they come up. I can't assume that Trey will make the time for me to take a break or do something for myself. I have to let Trey know I need a break, or once Squeaker is asleep do something I want. Now this means there are times I choose to sew instead of doing dishes, or I take a bath when I normally would fold laundry. But I am learning that if I take the time out for me that somehow all that other stuff still happens. And not only does it happen but I'm happier about life.

So what am I doing now that is making me so happy? I started working out. I bought the Insanity workout program, new shoes, and I'm going to do the whole program. Yes it's brutal, especially since I'm still fighting a cold. But I'm in love. It's a great workout, I'm going to get fit, and it's just for me. Movement is essential to keeping my Fibromyalgia in check and well I've decided if I'm going to hurt it's going to be on my terms, not just because my body thinks it should.

To make the process complete I started using a new sugar scrub every other night during my after workout showers. This scrub alone could make you want to just hang out in the shower until all the hot water is gone. It smells great, feels wonderful, and is homemade.

Super Easy Sugar Scrub

1/2 cup of white sugar

1/4 cup olive oil

1/4 cup of honey. 

Mix it up.

Use middle and ring finger to scrub in circular motions on skin. 

Rinse.

Yup that is it. Now I has some honey that had crystallized. Which I softened by heating the container in a water-bath. Then poured it in the mix. So I made a batch big enough to accommodate the honey I had. Also since olive oil is expensive so I used plain ole' cooking oil. Placed it in an air tight container to store. When you want to use some in the shower take some out into a bowl. That way you aren't getting water into you big mix, and you have it ready whenever you want it. Just remember that the oil can make the tub and your feet slippery so be careful.

6 Weeks

Six wonderful as healthy as Squeaker gets weeks. No extra antibiotics, no nebulizer, normal-ish sleep, it has been wonderful. Yes Squeaker still have IVIG which did not go great so we switched to at home infusion, lots of pain killers, and sleeping medicine was still administered but that is just life. Not having the extras... wow how refreshing. Especially since most of my friends and their kids have been dealing with colds, and stomach flu. It was really nice to not be the sick family for once.

This week the weather was just crazy. Up and down, rain, sleet, ice, snow, it played havoc on Squeaker's and mine's bodies. I have the start of an ear infection, it's still just fluid so hopefully some decongestant, hot salsa, anti-plauge, and garlic will clear it all out. Squeaker has a bad cold. Congested, runny nose, wheezy, happy, grumpy, sleepy, doc.... oh wait that's not a symptom that's a dwarf lol. Right now she is getting 8 nebulizer treatments a day and Advil 4 times a day. On top of the regular stuff. I have a feeling anti-biotic and a steroid are in our future. And as bumming as that is in general it will be the first time is 6 weeks. OH HAPPY DAY!!!

I do have to say that germ warfare is a lot harder when you are one of the germ carriers. 

Wear That You Care

I recently found out that immune issues are considered a rare genetic disorder. The Global Genes Project is devoted to looking for answers to all sorts of rare disease. But more importantly providing support for patients and families dealing with these disease that often have no name.

Also the last day of February is World Rare Disease Day. Of course there are events and even a gathering in the Washington DC. Well since we can't go to any other that (wayyy to many germs) I decided that we needed our own shirts for the day.

With a little ingenuity, a computer, a printer, the right kind of paper, and a few other things I came up with our own family t-shirts. The Zebra print is a nod to most doctor's training. They are taught that if is runs like a horse, and sounds like a horse it is probably a horse. Which means that if a patient has typical symptoms of say reflux, that's what you treat the patient for. Or if they look like they have the flu you treat them for flu. Most of the time this is a great rule to live by. But every so often if it runs like a horse and sounds like a horse it turns out to be a Zebra. People with rare disorders are Zebras.

Know someone who is a Zebra or want to show support? Make your own shirt using these graphics. Just remember when printing on transfer paper to set your printer to print in mirror image. Otherwise it will all come out sdardkcab (backwards).

ENJOY!!

It All Must Go

Growing up Mormon big families are normal. I'm #4 of 5 and Trey is #5 of 6, and we both wanted 5 kids when we got married. We had planned to have kids about 2-3 years apart. Which meant we were going to save baby clothes, toys, and gear. As we gathered items for Squeaker over the years I would carefully store items in totes. Marked by size, and perfectly stacked in closets or under beds. Over the last couple years I've slowly been giving some away and selling some, because we had a lot! Especially when it comes to clothes. Since Squeaker has this thing against growing she often spend 2-3 seasons in the same size. Which means new clothes for each season. There is just so much stuff!!!! And as each problem comes up with Squeaker's health I feel further away from another child.

Two weeks ago I opened a closet to get some sewing stuff and saw the blankets that my grandmother made for my children. She made them when I was a teenager, long before her death. My grandmother made 5 blankets for each of my brothers and me. I had planned on giving one to each of my children. So I opened the closet and there were the blankets, staring me down and begging to be used. A wave of sadness came over me as I thought, I may never use them. About 10 minutes later I realized I could very easily give them to Squeaker for her children. The legacy would live on.

Then about three days ago I started going through clothes to sell for consignment. That was it I broke down and started to cry. I love Squeaker with all my heart and wouldn't change her one bit. I will also be very happy if she is my only child. It still hurts to come to grips with the idea that most likely my family will be much smaller than I had dreamed. Then there is all this baby stuff. Just sitting here mocking me. A toddler bed, toys, a bouncy seat, blankets, clothes, bottles, shoes, cloth diaper, baby gates, all these things just sitting there for who knows how long. So I decided that was it, "It all must go."

Sure there is still a chance we will have more kids. It's not completely out of the question. The
emotional stress this stuff is causing it just not worth keeping it. I would rather spend the money and replace it in a few years than be bogged down for years. With the consignment sale coming up I'll be able to get rid of some of the bigger items for cash. What doesn't sell or isn't worthy to sell will be donated.

I am keeping the heirloom and special items. The blankets friends have family have made, holiday outfits, special dresses, and anything frog :). It is all packed away nice and safe, and then of course anything we are using now or what Squeaker will grow into is nice and safe. The rest is sitting in a pile in the school room. This next week I will be going through everything, organizing for the sale and boxing up stuff for give away.

It has been extremely eye opening about the pain mother must go through when having troubles conceiving or adopting. I just caught of glimpse of it and I was miserable. I also am blessed that I can physically liberate myself from that anguish. I'm sure I'll still have emotional days about it but this will most certainly help. And I have to say I love having almost two whole closets emptied.

What a Month

 We fought and beat two rounds of bronchitis. More importantly we have had a few "healthy" days in there. Which we just went out and enjoyed greatly. We taught Squeaker how to gather pecans, do split jumps and to say "I love you more". Sure our month was a little hectic but a lot of fun.

In other news I talked to the Immunology Insurance Coordinator, Jan, today and well she wasn't happy. Apparently the doctor never told Jan Squeaker needed to put through for IVIG therapy. So the process was never started. Jan told me she would get on it today and put it through as a rush order so hopefully we can have our first infusion in the the next couple weeks :)

On Thursday we have a sleep study for Squeaker. I was hoping to do one at home but since we are

seeing a new doctor he wasn't to try the hospital first. Our new sleep doctor, Doctor Roy is a fun guy. Not only is he best friends with Squeaker's Pulmonologist but he is open to real life. He didn't care that Squeaker and I still co-slept, and that if I say Squeaker is having hard time sleeping then she is. So if the hospital sleep study comes back normal we will do other tests. Wahoo! I love doctors that believe me.

Um yup that's it... short and sweet because well I want to sleep :)

I feel like crying

One of the most challenging things about having Squeaker be so sick is I can't be the mom I wanted to be. Yes, this is true of almost every mother because kids come with their own challenges and you have to adapt. It's also true that I am still the mother I wanted to be in many ways. I am kind, loving, fairly patient, interactive, and I truly enjoy my child. Which in the grand scheme of things are more important than being that mom who lets their 3 year old use a bottle, has to ignore the screaming to get something done, or who uses the TV to keep her sanity. But today one thing hit a little closer to home, food. Mostly the need for kids to have healthy food.

I saw 4 posts today on Facebook about healthy food for kids. Three of them just made me sigh and go, "If only I could."  Then one comment almost put me in tears. It was not made maliciously nor was it even made toward me, and I love the person dearly who wrote it. Today was just an pretty rough day this hit me hard. It didn't help that I was feeding Squeaker her second burger patty of the day. 


"...Nutrition can fix almost anything. Food sensitivity or parasites are a great starting place."

 

This is the mentality I was raised with. Raising a family of athletes my mom worked hard to make sure we were getting the right amount of carbs, protein, fruits, and veggies in our diet. She taught us about carb loading the day of a race. That during winter and off seasons our portions needed to be less so we could stay healthy. Mom would have loved for use to have fresh oranges everyday during the cold Maine winters but it just wasn't possible so she made sure we took our vitamins. Of course we still got sick and from time to time would need antibiotics, a daily yogurt was added to our diet to help keep good bacteria in our system. Good food can do great things, I know that and I wanted to be a healthy food mom.

We started out that way too. I pumped milk when nursing wasn't an option, I made baby food from scratch, and Squeaker didn't have sweets until about 18 months old. The reason we started introducing sweets was because they tend to be high calories in little spaces. And we needed those calories for weight gain. We still do.

So yes I am here whining about the fact that Squeaker is under doctors orders to eat junk food. She

has free reign over chips, crackers, cheese, ice cream, cake, frosting, hot dogs all those things most kids have to keep out or to a minimum. Before you start to freak out we do feed Squeaker healthy food. She actually loves it. Fruits are her favorite, follow by pasta with sauce. She will eat mostly anything we eat. All in all she has a healthy relationship with food, and enjoys lots of flavors and textures. But we still struggle with weight. All that junk food makes a difference, and every ounce counts.

Now you maybe thinking that if we dumped the junk food and gave Squeaker immune boosting foods it would make her healthier. Boy oh boy do I wish it was that easy. Since Squeaker's immune system doesn't know what to do you can give it good or bad stuff and it will do the same thing. Her immune system will just go along not doing much. Yes it is frustrating.

Here I am once again admitting I'm not the mom I desired to be. It's hard and yes it makes me want to cry. Then I look at my sweet sleeping Squeaker (it took 2 hours for her to pass out tonight) and remember I AM the mom I need to be.

The Upside

With Squeaker's crazy sleep schedule I'm awake at odd hours and for long periods of time. A lot of times I'm too spaced out to do anything. But there are nights where I'm wide awake listening to Squeaker breathing or just waiting for a freak out of some kind. During that I'm I like to be productive. I'll research different school things, or understanding a diagnosis, this is when a lot of flash cards get made :)

This week is Retro's 14th Birthday and he is having a Minecraft party. He or my mom... not sure who decided that they should play Minecraft Bingo. I don't know if you have ever googled that but it comes up with the online Bingo game, or a Bingo card you can use while playing the regular game. Nothing for a group game. Mom was not excited to make a new game from scratch so I offered to do it. Especially since yesterday was a sick day and I knew I'd be up with Squeaker.

After spending no less than 10hrs on this project I figured I had better share it for several reasons. I want recognition. I'm really proud of this one and it was hard to figure out what to use since I know nothing about the game. So yup I looking for pats on the back. Secondly as the saying goes "If I can't find it online, then it must not exist." Online research is one of my super powers. And if I couldn't find a good Minecraft Bingo game it must not be out. Minecraft parties are growing in popularity and another activity for already stressed moms would appreciated. Bingo is a great activity for parties and play dates, it's simple straight forward and it doesn't take an adult to run it. A child/teen with and understanding of the game and some reading skills can run it. Giving the adults a chance to heaven forbid get something else done :)

It's in two files. The Master Sheets, and Bingo Cards. There are 20 Bingo Cards.
***Please make sure you click on the links to print the cards. Not just the pictures.***
Update 2024 *** The files should be available to view and print when you click on the link. I will not be granting admin access please do not request it. This account is currently no monitored frequently. Every year or so I have to update the security settings sorry if this causes any inconvenience for your party.***

Tex Mex Casserole

I've been meaning to post this for a while because it is really good, and reheats REALLY well. The original the original recipe was called Skinny Tex Mex. I'm not sure I agree with that statement since noodles aren't exactly low calories. Most of my adjustments to the recipe came out of what I had in my pantry. That way if I have a whole in my menu plan I can whip this out :)

Ingredients:
1 can 10.75 ounce Campbell's Healthy Request Tomato Soup
1 Cup Water
1 cup chopped onion
1/2lb to 1 lb lean ground beef (90% lean) (or any other ground meat)
1 10 ounce can Rotel Mild tomatoes
1 15 ounce can Black Beans, rinsed and drained
1 15 ounce can Sweet Corn, drained
1 12-16oz box whole wheat penne pasta
½ tsp salt
½ tsp pepper
1 tsp garlic, minced
Optional: 1/2 Cup Cheddar Cheese

Instructions

1) Preheat Oven 305 degrees F. 

2) Spray Casserole dish or 9x13 pan with non stick spray and set aside. 

3) Cook Pene Pasta

---- While the pasta is cooking you can make the rest of the meal.

3) In a skillet (or pot) brown meat adding in garlic and onion. 

---- You can use pre-cooked meat just warm up in skillet with garlic and onion)

4) Drain any liquid out of the meat and return the pan to low heat

5) Add the Rotel Tomatoes, water, salt, pepper, tomato soup and stir well. 

6) Make sure your pasta is drained and then mix the meat/sauce mixture with the pasta. 

7) Let sit on low heat 

8) Rinse the black beans, then add corn. 

9) Pour Noodles into the casserole dish

10) Spread Black Bean/Corn over top the noddles. 

11) Sprkinle with cheese if desired. 

---- If you are going to freeze it stop right here. 

12) Bake 15 Minutes

Family Home Evening Charts

Family Home Evening (FHE) is a program in the LDS church to help strengthen families. You can read more about it here. But the basics are the family that prays together stays together. And to help make sure the whole family is involved we make these cute little boards or charts so we can keep track of who is supposed to do what.

Well Trey and I decided it was time for a FHE chart. I want a nice wooden one but I could find one I liked. Which means I'm going to be designing and making my own, with character meant for our family. Until then I needed something. I went searching for papers and found some adorable ones at MeinLilaPark. Then I whipped these up.

Frog FHE Chart

 

Stars and Stripes FHE Chart

Grey FHE Chart

They print out on a standard sheet of paper. My plan is to laminate the sheet and use wooden clothes pins with our names on them. I'll post pictures of those once they are done. I was just to excited to get these done that I had to share.

You could also use magnets or once laminated you can write on it with a dry erase markers.

Have any ideas for other themes or patterns??

Well That Stunk...

A Day At The Botanical Gardens

Made an oh so wonderful trip to Birmingham today. Please note that is to be taken with extreme sarcasm.

Today we saw Dr. Atkinson, who is an Immunologist. We arrived late due to traffic, but thankfully doctor Atkinson is usually running late so it's not like it put him behind. The visit to the nurses station was kind of fun. Squeaker didn't fuss or scream. She stood on the scale, stood tall for her height, sat for her temp, and BP. She had a great smile for the nurses. Then the numbers came... BP was a little high but not bad. She came it at 36 inches, can you believe it Squeaker is 3ft tall. Then over course the number that keeps me biting my nails, the weight. 24.5lbs. My heart just sank. Both of the nurses looked at me sad what's wrong. I said, "she's lost." Both nurses shared a sad face. One of the nurses usually works in our Pulmonologist's office and was almost as heart broken as I was because she knows how hard every once has been.

Moving on. Sadly Dr. Atkinson did not have the test results back... well he had them back but from the wrong lab. Which meant he wasn't confident in the results. The were testing Squeaker's here. Squeaker's first set of results came back in the low normal range so Dr. Atkinson wants to see if is second lab got the same thing. Which meant we had to do yet another blood draw..... Oh and it gets worse.

Last year Dr. Makris did a test where he ran a specific blood panel gave Squeaker a Pneumonia vaccine and six weeks later tested to see how her system responded. That test is what triggered our trek into the world of immunology. Also it would hopefully give Squeaker some extra protection from Pneumonia it self. Well we are doing it again. Yes that means not only did Squeaker have blood drawn today she had a shot too. Poor kid. She was very sore from the shot and then had to be held down for lab work. I'm just very glad she is at the age where stickers can make some of the worst things in life okay.

Now I don't know what I want the test to show. If Squeaker's results come back better then we have

Playground Fun After A Long Day

no clear answers about what's going on. Then again if Squeaker's results come back the same or worse then we have a clue what is going one, but we have to deal with treatment. Which I'm told is a pain but very doable. I don't remember exactly what it entails but I'm not going to worry about it right now.
complement immune system. The Complement System is your base line immune system. This is part of the immune system that you are born with and does not change. Read more





On the brighter side Squeaker had a good sized dinner. A few bites of Chicken Burger, half of a larg fry, and half a vanilla milkshake. WAHOO!! By the time we got back to Huntsville it was 7:30 and Squeaker never had a nap. To keep her happy and awake I decided to take Squeaker to a park. It was a blast!

Now we are home, cleaned up and Squeaker is passed out on the couch. Okay so maybe it didn't stink that bad.....