So Very Cool

Yesterday I bought Squeaker some new bubble wands. Nothing big just a little Wal-Mart three pack. These little wands are great to toss in a diaper bag (in a plastic baggie) and keep on hand for long waits at the doctor's office. In the past someone has always had to do the blowing for Squeaker. Then yesterday and today it happened. Squeaker started to blow her own bubbles. Maybe little to the rest of the world but around here that is fantastic breakthrough.

3 Years of Breathing Treatment Co-pays: $360
8 Months of Occupational Therapy
Co-pays: $104
Bubbles: $1
Seeing Your Daughter Blow Her Own Bubbles: Priceless

We Are Still Here

So the last 6 weeks have been a little crazy, okay crazier than usual.

In March we saw Dr. King (Gastroenterology). Squeaker had been complaining of a lot of lower abdominal pain. Dr. King added another pain killer to her medicines. Then he ordered an abdominal ultra sound and a barium swallow to check intestinal function. 
The Ultra Sound came back normal. Which is nice. The barium swallow went well... but slow. I mean re...al.....ly slooooooow. For the normal person from the time you eat to the time your food is sitting in your colon is about 90 minutes - 2 hours. So the test usually takes 2 hours. Squeaker's took nearly 5 hours. Yes you read the right FIVE HOURS!!  Which is a crazy long time to hang around the lab and un-able to eat. This test did tell us the source of the abdominal pain. It's just her gut trying to work. So it's the same pain she has had her entire life now she can tell us about it.

IVIG Sub Q has been going really well. About once every three weeks Squeaker has a reaction to the treatments. Usually she will get really fussy, throw up, takes a nap and his fine. A small price to pay for overall health. Speaking of we are about to hit week 4 of being healthy. Yup sticking my child every week with needles is worth it for that!

During our trip to Indiana I had oral surgery. Just some gum tissue and jaw bone removed. It has been a issue plaguing me for years so I'm glad to have it done. I have been healing really well with no complications. A couple more weeks and all the internal swelling and joint pain should be gone. Just in time for summer to hit!

Well Trey was a sweetheart and brought home a Redbox that I really wanted to see and Squeaker is finally asleep.

Donations

Squeaker now has a "Give Forward" fundraising account. A Mine Craft Bingo lover mentioned that we should set one up. I looked at the options and chose Give Forward because it was simple, straight forward, and they deal with all the non-profit stuff.

I put a link in the side bar so it's easy to find :) Any money donated will go to Squeaker's medical costs. Which include but are not limited to:
Gasoline to 3 specialist doctors- $30 a trip
Medicines- $50-$75 a month (on a good month)
Copays- $13 a visit
Specialized Diet Items
Therapy Toys
and if we raise enough we could probably get an maid service to help deep clean and sterilize our home more often.

I don't expect to raise a lot but if someone wants to contribute now they can. 

***UPDATE***
The Give Forward has closed. We will not be opening another one since the time they stay open is so short. We have decided that since we have several free downloads we should open an Etsy shop. This means if you want to pay for the Mincraft Bingo or another flash cards you can.
Come visit our Etsy shop:
Life With Squeaker

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.