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!!