Bubble Boys Update

Since the last bubble boys post, we've had a few more appointments and actually have some answers and some PLANS!!! All 4 boys went to the Allergy/Asthma specialist. Bubba had the least amount of allergies, just milk. The doctor decided that since he shows no outward signs of being allergic to the milk, I don't need to take it out of his diet! Actually, none of the boys need changes to their diets! We did agree to do allergy shots for Kaelam, Tiny and Ryker and those should start in another week or so. They will each get their shot once every 3/4 weeks for about 6 months. At the end of the 6 months, we will talk about whether we think the shots have made a big enough change to continue them. If not, we will stop the shots and talk about other possible treatments. Kaelam went back to the eye doctor about 2 weeks ago and had such a great check up that we now only have to go back 1x a year! He will need glasses at some point in his life but considering that almost everyone on both sides of the family wear either glasses or contacts, I doubt he will be the only one. He also SHOULDN'T need another eye surgery until he is about 13 or 14. I realized that I forgot to add something to Tiny's medical history in the last Bubble Boys post... About 18 months ago we were told we needed to take Tiny to see a pediatric geneticist due to his size, or lack there of. The pediatrician thought that Tiny may have a rare form or dwarfism called RSS due to his small size, the fact that he has almost no subcutaneous fat on his body, his forehead being large and then his face dropping to a really small, narrow point and his mouth being really small. So we took him in. They ruled out the RSS and said that they didn't want to run a bunch of invasive tests on him until it was absolutely necessary. They did ask us to get a bone scan done. A bone scan is a fancy way of saying an xray of the left arm that they use to compare to xrays of other children. Some his age and some younger. They use it to see if his bones look like the bones of someone his age. We went back to the geneticist for our scheduled follow up. They are still waiting on the official results of the bone scan but they think his bones are the size of a 2 year old, meaning that he is going to be a late bloomer and may always be pretty small. His growth has stayed consistent, even if it's only in the 25th percentile. As of right now, they don't need to see us back unless he starts falling behind developmentally. So we are ALMOST done with the majority of our specialists!!! Ryker has a BIG appt. coming up in August but I will write about that one at another time.

Fun, Cheap or Free Ideas and Events to do with the Kiddos This Summer!

In my house, summer seems to be the longest season EVER. Within two days of the boys being out of school I hear, "I'm bored!" So I have compiled an ever growing list of fun, cheap or free ideas for kids. These are things to make, games to play etc. I am also adding some events that are happening in AZ this summer. I'm sure you could find ideas like this in other states as well. So let's get started with the events around town...

Peter Piper Pizza for Kids Day every Tuesday from 11am-1pm all summer long starting June 11th. Children ages 3-12 years old can enjoy two slices of pizza, a kids drink, dessert and prizes plus participate in the weekly themed activity program for only $3.79 per child. I suggest calling ahead and reserving your spot. This is USUALLY available at each location. Themes are:
*June 11th - AHOY MATEYS
*June 18th - KIDS ART
*June 25th - CRAZY HATS
*July 2nd - STARS AND STRIPES
*July 9th - HAPPY BIRTHDAY TO YOU
*July 16th - NEIGHBORHOOD FRIENDS
*July 23rd - CHRISTMAS IN JULY
*July 30th - LET'S PLAY BALL
*August 6th - PETER PIPER FIESTA
*August 13th - END OF SUMMER PARTY

Superstition Springs Mall (Inside by JC Penny) is Kids Club from 10am-11am. It's geared to ages 0 to 5 but all ages are welcome. There is singing and dancing. The kids really enjoy it! When you become a member, after every program the kids get 1 free carousel ride, free movie at the $1 theater (adults have to pay), and a free kids meal at Chik Fil A with purchase of adult entrée. Now that school is out be sure to get there early to get a good spot as it tends to get busy.

Tumbleweed Recreation Center has Tumbleweed Tots on Tuesdays and Thursday from 9am-11am and on Wednesdays from 12:30pm-2:30pm. The cost is $3 per child and they have a variety of toys and activities for ages 0-6. And it's INSIDE!!!

*Check back for the list of activities as well as blog posts on the majority of them with full instructions and pictures!

Done with 'Traditional' School!

I have toyed around with the idea of home schooling my kids since before I even had kids. I knew that if I decided to home school my kids that I would get a LOT of crap from friends, family and even strangers. I'm not one for confrontation and I also try and please everyone. Yes, I realize how ridiculous and impossible that is. After pulling Kaelam from the school he started his 1st grade year at in October, I transferred him to another charter school after doing research and attempting to find the perfect school not only for him but for the other boys as well. I thought I had found that school. It seemed like a great place, very open, welcoming and still strict, which if you've read any of my other posts you know that I am very strict. Kaelam's teacher, Mrs. T. was wonderful. She was tough on him and he was thriving academically. His reading, math and writing skills improved quickly and he started to open up more. After less than 2 months, I received word that Mrs. T. was going to be leaving. Her husband accepted a job out of state and she was moving. I was assured that the new teacher would be just as great. Within two weeks of Mrs. D. starting, I was not impressed. She never seemed to be able to 'get it together.' She quit about 2 months later. On to teacher #3. I'm not one to judge before I get to know someone but something about the new Mrs. T. just didn't sit well with me. I heard the same thing from other parents. While Kaelam has still managed to keep his straight A's, he was struggling, like every other child I know with the Common Core method of teaching. Have you seen this crap?!? I understand that the idea behind it is to teach kids 'why' and 'how' they got to the answer but how is it helpful when their own parents and older siblings can't help them with their homework? I don't know about the rest of you but Common Core work caused MANY fights, tears and crappy nights. It was at this point that I finally said 'Screw it. I'm done.' I started researching everything I could find on home schooling. I joined local support groups, talked to people that home school their children and even talked to some people at a local enrichment school I found. It's a school for only home schooled children. They go one or two days a week and are there to do schoolwork, art, pe, music, etc. Basically, all of the subjects I can't teach them. And bonus, it gets them out of my house and some much needed away from mommy time! After doing even more research on the hundreds of curricula, I chose the Abeka system. I plan to use it for the majority of the work and to add in my own science projects until the boys get older. I also plan to use worksheets I can print for free and other workbooks for even more practice. So even though I still don't have the full support of the majority of my family, including Matt, I am convinced that not only is this the right decision for my family, I am confident that I can and WILL make this happen. I plan to start having the boys do worksheets this summer as a way to start them getting used to the idea of working with me. Lord, help us all! Lol

Bubble Boys

From the day that each of the boys were born, they have all had some type of issue physically. Kaelam had awful colic and horrible reflux. He was on special formula and 2 different medicines until he was a year old. Not long after he turned 1, we noticed that he seemed to have a lazy eye. The pediatrician wasn't bothered by it in the beginning but at age 4 we took him to an eye dr and we were informed that he had Duane's Syndrome. It basically means that the muscles of his eye are too tight and cannot move properly. We were told to patch the eye for a few hours each day in order to try and help some of the sight to improve. After about 18 months, they decided that the eye sight had improved as much as it was going to and decided to operate. The day before Thanksgiving, Kaelam went in for a 20 minute surgery where the dr. cut the muscle of the eye and stitched it into place. Although we were told that the eye would never have total function and would need to be repeated every 10 years, it was considered successful. Kaelam has also had lifelong eczema and needs steroid cream to help with the flareups. Then came Tiny. I was diagnosed with Group Beta Strep during my pregnancy with Tiny. Like any freaked out mom, I read everything I could on GBS. I went into labor with Tiny at 39 weeks and he decided he didn't want to wait for me to get the meds needed during labor to ensure that he didn't get sick from the GBS. I remember the nurse squeezing the bag of IV meds as Tiny was born. The dr. was hopeful that enough of the meds had gotten into my system that Tiny would be ok. They kept us longer and ran extra tests but Tiny passed them all. Tiny also ended up with colic and reflux and was placed on the same meds and formula that Kaelam had been on. At 10 days old, on Father's Day 2009, I rushed Tiny to the hospital. He hadn't been eating or peeing, had a high fever and his soft spot on his head and sunken in BIG TIME. I was terrified. I had no idea what was wrong. They ran test after test but still couldn't find the cause of the symptoms. It was at that time they decided to do a spinal tap... On my 10 day old, brand new, little baby boy. I agreed to the spinal tap and watched, tears streaming down my face, as my baby screamed. It was one of the worst things I've ever watched and that procedure will be burned in my brain for the rest of my life. The spinal tap and the million others tests they performed gave little answers. Tiny and I stayed at the hospital for another week, with him constantly hooked up to meds and monitors. It was awful. We were never given a 100% cause of his issues. They are assuming that it was the GBS. Ever since then, Tiny has had asthma attacks, horrible allergies, croup, bronchitis, pneumonia, awful eczema and probably others that I'm forgetting. On to Ryker. I was induced with Ryker due to a fall I had taken in my yard. Once he was born, they discovered that the placenta had started to detach itself. If they hadn't induced me, he may not have made it. Ryker also had colic and reflux and needed the same meds and formula as the other two. Last but not least is Bubba. Bubba was born and seemed to be 100% healthy, that is until he started the same colicky symptoms and severe reflux showed up. I gave him 6 different types of formula and had his meds changed numerous times. I knew that something was still wrong with him but the pediatrician wasn't listening to me. I finally decided to switch drs and I am so glad that I did. It was wonderful having someone listen to me! He put Bubba on alimentum formula, switched his meds more and sent me to a pediatric GI at Phx kids hospital. After seeing the GI dr. he scheduled Bubba for an endoscopy and a swallow test. The swallow test was used to see how much formula was making it into the stomach and staying in the stomach. The endoscopy was to check his insides and to take samples of the stomach and intestines. That procedure required him to be put under but thankfully only lasted about an hour. After all of those tests, we still had no answers. I was basically told to wait it out and hope that he would outgrow the issues. I had to start baby food really late and I had to be careful of what foods he was given that could potentially upset his stomach. He also had to stay on formula longer... about 18 months total. Thankfully, he DID outgrow the tummy issues! That brings us to a more recent time frame... Poor Tiny has had so many issues with asthmatic symptoms and allergies. We've had to put him on numerous meds, breathing treatments, inhalers, etc. Nothing has gotten better, in fact, it's only gotten worse. I got him into our dr. and after reviewing his charts, he was upgraded to full blown asthmatic, given a steroid inhaler to use 2x a day, everyday and I carry a rescue inhaler for him at all times as well. We decided it was time to start allergy testing on Tiny. The nurse came in and drew some blood to send off. I got a call a few days later with the results. Tiny had a TON of severe allergies. We were told that he was allergic to things like trees, grasses, molds, etc. The weird ones that we had no clue about were his allergies to wheat, soy, yeast, peanuts, corn, tomatoes, potatoes, carrots and APPLES. Yes, apples. Who's kid is allergic to APPLES?!? My weirdo, I guess. They also told me that he's allergic to penicillin. We've given him penicillin based meds since he was born. Now we are thinking that may be why he would stay sick for so long. The meds would clear up the issue but then cause underlying issues to surface. After seeing how many weird and random allergies he had, I decided to have the other boys tested. Today I got Ryker and Bubba's results. I'm still waiting on Kaelam's. Anyway, Bubba is apparently severely allergic to milk while Ryker is severely allergic to wheat and grasses like Tiny. I'm scared to see what Kaelam's are. As soon as I get Kaelam's results, I will be calling an allergy/asthma specialist and making a group appt for all FOUR boys. Lord, help me! There are also some other issues with Tiny and Ryker that will be covered in other posts, as we have some appts with specialists coming up this summer. All I can do at this point is to sit back and laugh. I wish I could put my kids in bubbles and keep them safe... Too bad I can't make that a reality.  :-/

To Yell or Not to Yell?

To say that I'm loud is an understatement. I can remember being very young and constantly having people tell me to lower my voice. That's really annoying, by the way. Anyway. Lately though I've noticed that not only am I yelling more but the boys are yelling more. They yell at each other, they yell at their dad and sometimes they even yell at me. I'm tired of all the yelling. So, I sat the boys down and we all agreed that we would work on yelling less. We would use kinder words to each other and really try hard not to yell. I wasn't sure how well this was going to work, as I yell the most and the loudest. Each day, I remind the boys how many days it has been since we started not yelling and I also remind them to talk with their indoor voices. We are on day 9 and it's going surprisingly well! The first time that I yelled was just two days ago. I caught myself and lowered my voice. It's amazing how now that there is so much less yelling, the boys are struggling more but I expected that, how nicely everyone is getting along. They are playing better, talking nicer to each other. Saying 'please' and 'thank you' more and even being calmer. I had my doubts about this actually working but I'm very proud of all 5 of us! Hopefully we can keep it up!

Welcome to MY 'Normal'!

Welcome to my new blog! This blog is going to serve as a window to my world. I had originally wanted this blog to be private and I was going to use nicknames, however, after talking with a certain friend, I have decided to be as open an honest as possible. There are things in here that I'm going to be talking about that are hard to write about and hard for others to read but if I am hiding behind a computer and a nickname, how will anyone take me seriously? So, here we go... I am Ashley. I'm a 28 year old stay at home mom married to my husband, Matt. I have four boys... Kaelam is 6 years old and in first grade. He is sweet, caring, quiet and sensitive. He is a perfectionist, poor kid. Next is Tiny. Tiny is 4 and in PreK. He is loud, spunky, goofy and wants to make everyone laugh. Then there's Ryker. Ryker is 3 years old and in preschool. He is loving, caring, funny and a handful. Last is Bubba. Ok, so I'm still using a couple of nick names but Tiny and Bubba is what they go by all the time so they don't count as nick names. Lol. Bubba is 2 going on 15. He is my brat. You will see the word 'brat' used often in my writing. In my house, brat is a term of endearment. Bubba is as far from a people pleaser as possible. He just wants to have fun and make his brothers laugh. He also enjoys taking their toys and listening to the yell as they chase him to get the toys back. In addition to being a child hoarder, I'm also a bit of an animal hoarder... Or so I'm told. I have 4 dogs and 5 cats. As if I'm not busy enough raising all of these kids and animals, I also have numerous 'jobs' and activities outside of the house. I'll end up doing separate posts on each of these but I'll list them for the time being. I have a custom vinyl design business making everything from party decor and favors, to t-shirts, to wall art, etc. I also have an event planning business. I do everything from weddings, to parties, to showers. I'm even an ordained minister! But the thing that takes up the most of my time outside of the house is my work in suicide prevention and awareness. I have lost a few people to suicide and I am VERY passionate about my work. Part of that work is facilitating a support group for people that have lost someone to suicide. I also volunteer with a group called the LOSS Team where we are called to the scenes of suicides to meet with the friends and family of the person that died and offer them support and resources. I'm a quiet and shy person until I get to know you and then there is no shutting me up! Once I break out of my shell, I'm loud, obnoxious and have a crude sense of humor. I also swear like a sailor... I'm working on that but I wouldn't hold my breath. (THERE WILL BE SWEARING IN THIS BLOG. I WILL DO MY BEST TO TONE IT DOWN BUT IT WILL BE IN HERE.) Like my mom says, "Sometimes there just isn't a better word to use than f*@k!" Sorry for calling you out, mom.  :) I guess I should try and explain the title of my blog. A Hop, Skip and a Jump Away... From Normal. My family is not normal, for many reasons. Than again, what IS normal? We may not be YOUR normal but we are OUR normal. Having 4 boys so close in age is not 'normal.' My style of punishment for the boys (I'll do a separate post on it as well) is not 'normal.' My extended family situation is not 'normal.' Ryker is not 'normal.' Also another post. My having 9 animals is not 'normal.' My almost obsessive work with suicide is not 'normal.' My tattoos are not 'normal.' I think you get the idea. What I'm trying to say is that although we may not be society's version of 'normal,' we are still normal. It's that we are just a hop, skip and a jump away... from normal.