9/6 - You don't realize what you have ....

until it's gone. It's so true. You don't truly see things as blessings until it is yanked away from you and only then can you see it from a different perspective. I used to get bored if I didn't have enough things to do during the day. I used to run around like crazy and then wonder why I packed my day so full. Those were the days. Then I had kids. Everything changed. Not because of the kids per say, but because my body flipped out during my first pregnancy. I got mono at 9 weeks and then followed by a virus that caused havoc on my body (and kept me near the potty). I was either pregnant or breast feeding for a little over 3 yrs. I was chasing around 2 very small kids (one with colic) who had lots of ear infections (read doctor appointments) and Brad was usually gone. I was working 2 part-time jobs at the beginning but couldn't handle all the traveling and time away so just started doing teaching (I was the Wellness Specialist before). I was tired. Very tired.

Time went on and I just figured life with his was just extremely exhausting. It wasn't until a little over a year ago that I really got the feeling that I shouldn't be this tired. When we got to Alabama last year things continued to get worse. I was completely worn out. I wanted to do part-time daycare with the boys but quickly realized that wasn't an option because I was too tired to care for them the way I wanted to. I started seeing doctors and trying to figure out what was wrong. I had to take at least one nap, sometimes 2 naps a day because I was so tired. My constant workout schedule was reduced to lucky if I have the energy to do anything. A workout no longer gave me energy and made me feel good. It completely drained me and I was useless for the rest of the day. I even drove 3 hrs away to see a Naturopath doctor to get input about things
My symptoms:

• EXTREME fatigue
• always being cold
• tons of hair falling out
• my concentration and memory were getting bad
• unexplained weight gain
• lowered blood pressure

At first they thought it was my thyroid which really seemed to fit. Blood work revealed things to be within normal limits (but barely). There was one time when the test indicated hypothyroidism but they did a repeat test and it squeaked back up barely. My primary care then ordered an MRI of my brain to check my pituitary for a tumor. It came back clear. I suddenly got pretty severe ulcerative colitis and I was being treated for that. An endocrinologist wanted to check my adrenal glands and did a cortisol test which I had a horrible reaction to and passed out. I was being treated for adrenal insufficiency without having confirmation of it but it was worth trying. It brought up my energy slightly but not to a point where I could function normally. I was sent to a kidney doctor for having protein in my urine and while it came back ok that day and she couldn't find anything wrong. she definitely thought there was something wrong. She asked me a bunch of questions and then said I should get a sleep study.

Armed with this information, my primary care sent me to neurologist who agreed. I did a first sleep study and that test revealed I was borderline hypersomnia. After some discussion with the nurse at the neurology office, she realized I did my first study while on two medications than can greatly alter the test results. I went off the medications and waited 3 weeks and did another study. This time the study came back and they classified me as hypersomnia. The first sleep test I feel asleep in my daytime naps in about 8min 30 sec and in the second one it was about 3 min and 30 sec. I was diagnosed with idiopathic hypersomnia and prescribe a traditional medication to help. The medicine definitely helped with keeping me awake for the first few weeks but I was also still very fatigued. I was on the medication for about a month and then moved back to Florida. Another week or two passed and I was completely exhausted again. I mean I could nap all day exhausted (although I can't really nap because the medicine I take keeps me awake, but I'm still exhausted which is actually painful. I'm so tired but can't sleep during the day). I go through a bunch of referrals and doctors here and finally come to a doctor that says something is wrong with my body and we need to figure it out. About 2 weeks ago I had a spinal tap and the fluid was send to Stanford University for analysis which will take a while. I also had tons of bloodwork done. A few days later I had another sleep study (night and day) and this time I fell asleep in an average 2 min 30 seconds and hit REM sleep on all of naps. In my night study I also hit REM sleep in about 40min (it should be about 90 min) as well. The combination of these things along with my extreme tiredness has given the doctor a different diagnosis: Narcolepsy without cataplexy. Narcolepsy!! No I don't fall asleep while anyone is talking to me but if you stop talking and I know it's okay to fall asleep I certainly will. He changed my medication dosage and it hasn't done anything. I am still completely exhausted. I can barely take care of the boys at this point. I feel like it takes all the energy I have to just get them fed and off to school. The afternoon is even worse and I feel so lucky if I have actually given them a dinner that would be considered a meal.

This week, my doctor decided to put me on a medication which could significantly change things. It is a medication that has changed many lives and has allowed people to live a normal life again. This medication will also alter things for me and the boys. You can have no alcohol with this medication which doesn't matter for me since I don't drink. You also cannot have any food 2 hr prior to taking it which means no more food after 8pm. This will be a challenge because I like my 8:30/9:00 little snack to keep my belly full during the night. This medication is only made and distributed through one company the program is tightly controlled because of the potentness of it. I start the medication tomorrow and I am hopeful but nervous. Part of me still thinks it is something about my thyroid that is wrong but another part of me is so desperate for the ability to stay awake that I will do/try anything. It seems so much safer for me to try a small dose of synthroid or something rather than this crazy black listed drug but then again I'm not a doctor ... well I am but not the medical kind :) It just seems like I got pregnant and then my body started fighting against itself and hasn't stopped.

5 yrs ago I would never thought that I would be someone who is so exhausted I can barely function (and sometimes not function). I feel like I can't even keep up with life. I can't dream of doing anything past 7pm because I'm crawling to bed myself at that time. My mind is so foggy that it takes me twice as long to do anything. At least those days that I used to run around like crazy, I had the energy for it. I was worn out at the end but that was it. These days I couldn't physically do it; my body wouldn't let me "go" for that long.

I'm posting this so it will be in the blog. Yes the pictures I take often make things appear so great and fun but .... I am struggling to be the mom I want to be. I'm so exhausted by the time Aiden gets home that I just want to curl up on the bed or couch. I don't (usually) but I'm so exhausted that my brain isn't working and the simplest tasks seem so hard. I have barely enough energy to get Eli and once I get him home I'm so exhausted. They have been gone all day so they just want to play and spend time with me. I've missed interacting with them all day but my body just can't function at the level needed to keep up with them. There are many times I'm so exhausted after making dinner that I just sit at the table with my dinner in front of me because it requires too much energy to have to eat. I know it sounds crazy. The tv and i-pad babysitters are showing up more and more because I'm too tired. The disappointed faces of little boys who just want to play with me but I am just too tired are devastating to me. So I am praying for a treatment that works; something that can let me be an active part of my boys lives, be a wife, and just feel human again. Your prayers are appreciated. This past 1.5 yrs have been the most difficult I have experienced. I have such a small amount of energy and to-do lists that are huge and I still haven't figured out a way to let go of all the things that I didn't do. With all the exercise I have done and healthy eating (for the most part), I would never have thought my health would be in this condition. Today I am thankful for legs that work and get me around, arms to hugs my boys, eyes to see God's beautiful creations, a heart that works and loves.

8/31 - Randomness (art, food, bikes)

I want to update about food stuff first. Aiden must be going through a growing spurt because the kid is eating food is mass quantities and of things that are not even close to his favorites. He is still enjoying making his menus every week and making the lunches too. I need to get a little better with the timing of making his lunches because sometimes we don't have quite enough time at night and he has a breakdown over it. 

When we moved in to this house we decided we were going to make things more accessible for the kids so that they would have the opportunity to be more independent. We did just that and it's working out quite awesome. First of all, we gave the kids their own space in a cabinet. I bought a bin from walmart and it's full of cereal bowls, snack cups, and regular drinking cups (see upper right picture). In the pantry, we also gave the boys their own shelf. It has all their snack foods on it (see far left upper picture). I've taken everything out of the bags/boxes they come in and have put them in containers which the boys can easily open and close. I didn't do this at first but found the food getting stale rather fast from little hands not fully closing bags. What you cannot see is that also in pantry to the right of the boys shelve, there is also a 1/4 cup measuring cup. This helps them know how much to take and also makes sure they are not just sticking their hands in the container and touching all the food. I must say it is so awesome for me and for them that when it's snack time or they are hungry, they can get it themselves. They've also had to put their dishes away but we have also changed a policy since moving. We get one cup a day. They know to put their cups on the counter and the rest of their dishes go in the sink and the one cup a day rule is helping a ton on not having 6 glasses to wash by the end of the day. In the middle picture on the left, we also have a snack bin. This is a special bin and is typically used for on-the-go snacks. If we are running out the door and will need a snack (and I haven't already gotten something together), they can reach in and choose something. Some of it is pre-packaged store bought stuff but some of it is snack items I've just placed in small baggies (dried fruit and nuts, homemade fruit leathers, etc). Aiden picking the items in his lunch is going great and he's coming home almost everyday with everything eaten - even the veggies that he normally won't touch at home. And yes he actually eats them and doesn't throw them away :) Allowing them to be more food independent has been a great decision for our family.

Here is little Eli walking to the van one day after I picked him up from daycare. He just got off the playground which is why he is all sweaty. His daycare is going well and he really likes his teacher, Mrs. Chari. He has even found a friend in class that he pals around with now.

I don't know why I like this picture of Eli sleeping so much. There is just something so cute about sleeping his and it looks like he just feel asleep while pondering something with his hand under his chin like that. He has been napping great at daycare (2 hrs everyday) and the little stinker hasn't taken a nap for me in weeks ... until today. God knew I so needed to rest myself I think.










I love how much fun the boys can have with a random wardrobe box. Aiden has become so creative with things like this from all his therapy and crazy stuff he did with Mrs. Rusty.





Lowe's has been making characters from the movie Planes this month and we have made both of them. They have been the hardest things we've built from any of the workshops.











Eli really likes electronics. Too much for my liking. That said, I have been beyond exhausted lately (more on that in the next post) and some times I just have to let things go. At least he is forced to play educational games for the most part. Here he is with a Leapfrog handheld game a former neighbor gave us.




The boys have really enjoyed having Bronco around. Aiden enjoys playing with him and helping walk him. Aiden just threw the toy down to the master bedroom area and he's watching Bronco bring it back. Eli loves to love on Bronco like Bronco is a stuffed animal and Bronco hasn't exactly taken to that just yet. Sometimes the boys gang up on Bronco because they are trying to do something crazy to/with him. They are slowly learning that Bronco doesn't play chase or tag or like to wear blankets.

Eli went to the ENT last week to get his left ear checked out. His 2nd set of tubes fell out of his right ear months ago but is left ear has really been bothering him lately. The dr looked at it and then he had a hearing test last week. He did much better on the hearing test than before (yeah) and they gave him these ear plugs to see if that helps with the pain he experiences with water. He wore it in the bathtub so now I just need to find the time to take him to the pool. [Man I love that little dimple]

About 1.5 weeks ago I bought a trampoline off Craigs List. It's slightly larger than the mini-tramp I was thinking it was but it's great. The boys love it. Especially Eli!!! They both enjoy jumping on it but Eli goes on that thing multiple times a day without me suggesting it. 

This collage below is from a few weeks ago. We decided to do some painting. You can see Eli and Nana in the upper left. Eli was using water colors but he's not so great at cleaning off the brush before he goes to the next color and that drives me a little crazy. Aiden decided to use the bingo markers (so he won't get dirty) and he actually did really good trying to draw things. He normally just makes shapes and then is done but he made a truck (middle left) and in the upper right he was working on an ice cream cone. I just love how he sticks his little tongue out when he is really focusing. Eli then switched to a different kind of paint and decided to paint with brushes that had texture/design (bottom right picture). Eli just loves painting and would probably do it everyday if I let him. 

This week was a big week for me. I started teaching in the classroom again. I'm teaching at Jacksonville University 3 days a week. It takes me about an hr to get there but that is because of the way I go. JU is NE compared to where I live so the shortest way it to take I-10 across the water but as you can see in the map below, there are 3 red dots already on that path. That route would take me about 1.5 hrs to get through all the traffic (without traffic it takes 45 min) so I just bypass it all by adding some mileage and going up and around on I-295 (the big yellow circle). It adds mileage but there is no traffic and accidents so at least it's moving and also consistent which is important for me to make my 9am class to teach. I am teaching Sport Specific Conditioning and am loving it. The ride home is much quicker than to work as well. My mom is helping out a ton with the boys this semester so that I can teach which is great. On the three days I go in, I get all the boys stuff ready and breakfast on the table and then head out and she get them to the bus stop and daycare. I'm so thankful she is willing to help out this much so that I can get back in the classroom.

I've had lots of medical stuff going on lately but try and make it home in time for Aiden to get off the bus. After I got Eli home the other day I made a bike obstacle course. I made one a few days earlier and  the boys really enjoyed it. It rained that same day and erased all the chalk marks so we made a new track the other day. It had rained a little earlier but most of the sidewalk and driveway was dry enough to use chalk. They love following the arrow around and it makes it more purposeful for them than just riding around in the circles. I've just ordered some more cones because they really like weaving in and out of them.

I had to include this last collage for Rusty. I went grocery shopping this morning and this is what I found when I got back. Aiden had created a target on the wipe board easel and gave everything a point value (the small purple circles around the outside are worth zero pts) and then he was using his arm thing that shoots out discs that he got for his birthday to try and hit the target. He would watch where they would hit at and then put a check-mark by the corresponding number. After he used up all the discs (4 or 5 I think), he would then go to the other side of the easel which is a chalkboard and then write down all his point values (see middle right picture). After he wrote down all those, he got the calculator and added up all his points (I taught him how to use the calculator a few weeks ago). Welcome to Aiden's world of math. This is what he enjoys doing. :)

We ended off the evening tonight playing Tell Tale and Aiden was actually having fun doing it. Eli loves to make up stories but Aiden is usually too scared/nervous and won't speak up. Tonight he was speaking loudly and not even concerned about if his stories made sense which I LOVED!! He is making such huge strides in some areas right now.

8/21 - School is in session!!

Aiden has been obsessed with lizards since we have moved back to Florida. He keeps saying he wants one as a pet. We went to our friends beach house a few days before school started and much to Aiden's delight, his friend, Carter, catches lizards. We just pull up after a 1.5 hr drive and I open the van door and Carter runs up and puts a lizard on Aiden's arm (see upper left picture). I thought Aiden was going to flip out. He didn't. Not at all. He stayed pretty calm. Aiden eventually holds the lizard, pets it, picks it up, and lets it crawl all over him!!! It was so awesome. With the help of Sue and Carter, they caught a lizard that we took home and kept for 1.5 days. It was a beautiful nice little lizard (never thought I would say that about a lizard). It a little chameleon one too. I was too scared it was going to die on us because I have no idea how to catch the bugs it needs to eat so we let it go. Come to find out later, the lizards that have kinda taken over North Florida are the mean lizards and actually eat these small lizards that are actually from the area so it makes me sad to think of this little guys fate. We did give him a habitat for a few days though and then Aiden caught another lizard at our friends house and we kept that for a few days too. We are currently lizard-free for the moment. 

I forgot that it had been over a year since the boys have been to a beach. They both were hesitant to walk on the sand at the beginning and complaining that sand was getting in their crocs.  Eli tried digging holes for a bit. He just enjoyed himself running away from the water and running in the water a bit and then just digging holes.


Aiden was brave enough to try and ride on the boogie board on his stomach. Carter did a great job of not pulling/yanking him to fast around to make him fall off ... after he did it once and we asked him not to do it :) Aiden had a good time.



Some of the best times for the boys were just hanging out at Sue's after we ate some dinner. Eli had a blast playing on the tire swing and Aiden got to fly frisbee with Riley for a while. We got home super late and the boys were totally worn out but we all had a good time.

After realizing that all of Aiden's pencils for school had to be sharpened, I got an electric sharper because I have better things to do than sharpen 40 pencils by hand. The boys had a blast sharpening all the pencils for Aiden's class so it worked out perfect.

Aiden had orientation at his school on Monday. We got to meet his teacher (who is fabulous). There are 3 pods of tables in Aiden's room of 4 students each but she's got more students than that so 2 students sit at this big table in the back corner. That's Aiden table. I actually think he likes because it's less people to 'bother' him and he's on the left side so no one to bump elbows with (he's a lefty). His 'First day of kindergarten' pictures crack me up because it was just starting to sprinkle and he just wouldn't let it go (hence the hand being held out to 'see if it was raining still'). After meeting his teaching, seeing where he was going to sit, and having some questions answered, he was all ready to start the next day.

Tuesday was the first day of school. Both boys were so excited. Eli and I walked Aiden to his classroom (after parking up over a curb on the grass and making it through the mobs of people) and Aiden got to look at a book while we waited for his classroom to be open. Mrs. McEachen had play-doh waiting at the tables for them. Exciting news: Aiden sorta played with it!! Eli was so encouraging to him and giving him ideas for the play-doh. I finally told Eli it was time to go and he gave his brother a huge hug. So cute. I eventually found out he asked two questions throughout the day: Is it time to go home yet?

I then dropped Eli off at his new daycare. Eli was so sad. He didn't know anybody and his big brother was not there for the first time ever (they've almost always gone to the same daycare). Eli was crying and it broke my heart. I was fine with Aiden but Eli made me get a little tear in my eye hearing him cry like that when I left. I called a few hours later to check on him and he did great. 

As a "great job" reward for their first days, we wen to see Planes. They loved it and had a blast. The motorcycles on the way out were too enticing not to stop by and try out though. I am fine with that as long as they don't expect me to give them money for those crazy things. :) 

All this excitement was just too much for Aiden. He crashed on the way home from the movies. Little stinker Eli won't nap for me at home but he slept for 2 hrs at daycare. (He's been sleeping about 2 hrs almost everyday since he started now)

I've been working a little project: A menu for Aiden. I am determined to not let Aiden eat yogurt and some carb for every lunch so here is my attempt at a balanced lunch and letting him choose things but still having variety. Thus we have Aiden's lunch menu. I google imaged a bunch of things that I know Aiden will eat (lots of carby snacks and fruit) and then researched some ideas that other parents had for lunches. His only rules are that once he uses a card (a food), he can't use it anymore. This forces variety and for him to try new things. He's made up a banana burrito so far (1 half of a sandwich thin with peanut butter and a banana half wrapped inside) and has chosen things for his menu that normally are an issue for him to eat at home (salad, cucumber, peppers, etc). I was so excited that he chose this for his menu but here is the real kicker: I'm not telling him anything regarding how much of his lunch he is supposed to eat and he's still eating a great portion of the items he normally won't even eat for me at home!!!! AWESOME! 

 The other really cool thing is that he makes most of his own lunch the night before. Here he is putting peanut butter on his crackers. It's great because he's learning how to use butter knives and sharper knives for fruit and vegetables (yes I am supervising him). He puts on exactly how much peanut butter he wants so I don't have to hear complaints of how I put too much on and it came out the sides or that there wasn't enough. He actually gets excited to make his lunch!! I never thought that would happen. He's also finding ways for little brother to help. Tonight he let Eli scoop in the Chex mix in the container while Aiden was putting nuts in his other container. I'm loving this. He makes the menu on Saturday so I can make sure I have the stuff and if I don't have something then I take the card out so he can't choose it. This week we had to shuffle a few things around (switching fruits for a day and a vegetable another day) but he's just fine with it. 

Even though he hasn't napped in weeks, the fact that he doesn't have a rest period anymore is just wearing this kid down. I wake Aiden up to take him potty before I go to bed and I flushed the toilet for him and walked into his room and he wasn't there. After a slight panic I found him in my room (across the house) on the floor on the crash pads under the swing. Poor kid.

My mom and I went to Aiden's school last week to have lunch with him. It was fun and he enjoyed (see picture to left) but then cried once it was time to go back to his class.












Aiden has been adapting really well. He got his first V (very good) for conduct last Friday and was super excited. He LOVES taking the bus to and from school and just got assigned seats today and is really excited about that. He loves his seat right by the driver :)

I wanted to include this picture for Brad. While we have had a few horrendous bath times, we've had 1-2 good ones too. Here is one where Aiden is laughing because they were drinking shower water and then spitting it back out.

My little man getting on the bus to go to school. Eli goes with me sometimes to wait with Aiden for his bus but then Eli gets sad once Aiden gets on and starts crying. We are all still adjusting. 

On Saturday we wanted to go have some fun down by the amenity center. He are Nana and Aiden up in the treehouse. We all played putt putt and the boys had fun. Aiden played the course about 3 times I think although he never waited for us to finish hole together. I think Eli and I were on  Hole 4 and Aiden had finished all 9 and was starting over again. 

Eli ended up just preferring to watch other people play because he just found it too hard. 

I thought we still needed some exercise so we became race cars and raced around the putt putt golf holes. That was actually a lot of fun. I wanted to take a cute picture of the boys and I before we left but I tired them out so much that Eli (green shirt) wouldn't do anything that I asked him to do and Aiden (white shirt) just wanted to tell us each letter written on his shirt.

I start school on Monday!!! I will be teaching at Jacksonville University as well as the College of Southern Maryland. I'm so so so excited to be back in the classroom this semester although this fall semester is going to stink pretty much because I have to commute there (about 1 hr each way) on MWF and fight morning traffic and drop Eli off crazy early at daycare. After 2 weeks of getting adjusted to school, things are going to get even crazier as I go back to work and my schedule will impact all of us. We miss you so much Brad!!! As Aiden prays every night, "Please let daddy do well on his school work so that he can hurry and come home."