9/21 - pool, parks, and fun

It's been a really long time since I've posted. I've just haven't been able to keep up with the pace of life (see my last post). That said, I've still tried to make sure the boys are having fun. Here are the boys at the playground. It's so awesome that Aiden can swing himself now. I'm trying to get Eli to get there. He's totally not motivated by telling him that when he learns how to swing he can swing whenever he wants but I do think I can motivate him to learn by telling him he can make himself go really super hi.

It's been great to have Mike and Arin so close (it would be awesome if they were closer but at least we are only 45 minutes away now) and they came over a few weeks ago and we all went to the pool. The boys had a ton of fun because Mike was there to play with them in a daddy kind-of way. It was also pretty fun to have an extra pair of hands and eyes at the pool. They let us take the kids down the big slide on our lap for the first time ever. It was great and I've been able to do it again since then. When we first moved here they would not let a parent go down with a child in front on them or on the lap so the boys have really enjoyed that lately. It's also great because the boys love playing with Grace so it's a great day when we get to see the Hunter Family.

We've been experimenting lately with some kids yoga DVD's from the library. Aiden is awesome and will try it and does a good job. Eli just hangs out on the couch and watches Aiden.

Here is Aiden doing some "seat work" in some wipe off books we have. Both boys have books that they can do and it's one of their options during quite time on the weekends.

The boys have been wanting to go this playground by us for a while. We pass it going to our house but have never made it to it. We set out on an adventure a few weeks ago on a Saturday morning. We biked down (it's about a mile) and then had snack there and played for a bit. The actual playground is not that great but the boys had a ton of fun getting the back tire of the bike stuck in the sand and then pedaling still so that sand would shoot out from under the back wheel. I was too nervous they wouldn't have enough energy to make it back home so eventually had to put an end to that. We did go on an impromptu treasure hunt after Aiden decided a level of the playground was a ship and we were about to crash so we had to jump ship. We ran to the island and found a tree with treasures (little berries). And no, I didn't let them eat them. The had a ton of fun trying to pick them off the tree and they stored a bunch in their snack cups. It was getting late and hot and I was getting pretty tired so we headed back. Aiden had a hard time making it back but Eli was full of energy. I actually had to slow him down so that he would stay in my sight while I was trying to encourage Aiden to pedal more and/or take less breaks. I finally told them that if they made it back all the way (Nana was on stand-by to come get us) they could have a movie night (watch a movie and eat on the picnic blanket in the living room). Aiden was exhausted but made it. Eli was full of energy and probably could have kept going for a while longer. That's nice to know seeing how he plays the "I'm too tired" card when any kind of walking is involved. :)

I had a Cutco service person come to the house to sharpen our knives about 1.5 weeks ago. While he was doing his thing, Eli (who was fully dressed the man got here) comes out in a full pirate costume. I couldn't even keep a straight face. The cutco guy was laughing and Eli played pirate for a while. This child is so random but so funny.

I decided we hadn't painted in a while and Eli normally loves to paint but usually I don't have the energy or patience for it. I've been making a point to be 100% engaged when I do something purposeful with the boys and wanted to paint with sponges. I cut them up and got the paint all ready and was excited. Eli painted for about 2 minutes and then decides he is done and doesn't want to paint anymore. Aiden got in to it quite a bit. He eventually put an apron on and painted a lizard and a person walking it. He's become so creative and willing to try and draw things. School has really helped him with this and I'm so excited for him. He has always been so scared to try and draw/write things because he will "mess up" or "doesn't know how to do it right" and I'm so glad he's been able to let go of that some and just try.

Aiden has been asking if I can bring Eli to school for lunch. Aiden's lunch is at 10:30 which is pretty early so I finally put it in my schedule to do. Eli was so excited to go. I told Aiden's teacher we were coming because he's been wanting to show me a journal that he has a school and she said he could bring it to lunch next time I come. He chose his Science Journal. So far it's a bunch of colors and he has to glue a small sheet of paper onto his notebook paper and then complete it (write the color and then do a little activity near the bottom). On the other page he has to draw various things that are the same color. I took a picture of this page, Orange. He drew some of the same thing on the right side that was in the picture on the left but he didn't have to.  I was so impressed especially with his jack-o-lantern.

Eli gave Aiden a huge hug when it was time for him to go. Eli was pretty excited that we left Aiden's school (where he did eat a decent lunch) and was able to go to daycare and eat lunch again. It turns out though that he wasn't hungry for much.

The Oakleaf Chick-fil-a had a carnival a week ago and we went (it was a Monday or Tuesday night). It was awesome. They totally outdid themselves and put on quite a show. While we were waiting to get our tickets to get in to the carnival, a man on stilts came over to us. The boys thought that was pretty cool and the man was juggling and even played catch with Aiden. Eli was too shy to play catch though. We got in and the tickets that we got to get in were then used for the candy jar booth. They got to pick out 3 kinds of candy to go in a bag which they thought was pretty fun. Nana went to wait in line for the ferris wheel and I took the boys around to some other random booths. They had a mini blinko board and the boys won a free cookie and free Dr. Pepper drink. The threw some bean bags through holes and won a cow too. It was then time for the ferris wheel. 

They were pretty excited and had a ton of fun on it. It's hard to see their faces but they loved it. We then waited in the train line for about 30 minutes. I tried to talk to the boys out of it because we rode the train a few weeks ago and could come back in a few weeks to ride it again. They said they wanted to wait for it though. So we finally got on the train and while we rode the train Nana went over to the ferris wheel and got in line for it again. We literally got off the train and then the boys got to ride the ferris wheel one more time right when we got off the train.

The boys had a really fun night and it was a great even that Chick-fil-a hosted.

 I set up another bike obstacle course again the other day before school. I know Aiden goes and sits all day from 8:30 until 12:30pm which is when he has PE so I try and get him moving in the morning if we have time. They have fun and it's a great way to start the day. In this picture Eli is navigating through all the curves.

Aiden had Parent Night last week at school. The first 20 minutes were for parents of K-2 to go the classrooms and see what has been going on and then to listen about the new grading procedures for the other 40 minutes. Aiden was really excited to show me all his other stuff. I was amazed. He has a Poetry Journal!! It focuses on a letter and then there is a 4 line rhyme using that letter and then a little song at the bottom. He has to glue that on one page and then has to draw a picture of it on the other. Towards the beginning of the journal (before they start working on the letters) they had some open-ended questions. One was "I can ...." Aiden wrote "I can love." and then drew this picture (see pic to the left) on the other page. He said he was dancing with me (I'm not sure if I'm the brown person or orange and blue) and the hearts showed how much he loves me. My heart just melted. So sweet.

Nana asked if Aiden wanted to help her make some cookies last week. He said and then runs out to the craft/game area. I then hear all this weird noise. I go to see what he is doing and he's bringing the art easel over to the kitchen and says "I'll write down the rules." What? Rules? We are cooking. He then proceeds to come up and writes down the following rules:
1. Follow directions [on the cookie mix].
2. Be safe.
3. Clean hands.
4. Clean up your mess.
5. No snezzing on cookies.
6. Don't eat all the cookies.
7. Make sure you share cookies.

The kid cracks me up. I picked up Eli from daycare and once he got home and washed his hands, he was allowed to help too. I was shocked that they both made a few cookies. They have never make a cookie ball for me. They put one finger in it and say it's gross and won't touch it.

 Last Saturday I took the boys down to the pool in the morning at 10am. We were the first ones there! Nana came down a bit later and joined us which was great. It was nice and relaxing and we enjoyed it. It worked out well because it rained all afternoon so we were stuck inside.

Last Saturday marked one week I have been on my new medication. I found out that 28 days worth of medicine costs $6200. Yeah. You read that right. Wow. The first days felt like no change but I then started to notice one of my medications that typically has not worked, started working (it's called Provigil). After a week on the new medicine, you are supposed to tritrate up to the next highest dose. I am super sensitive to many medicines so I decided to not go quite so high as they recommended. I took my 10pm dose and then woke up at 2am, felt very drugged still, but went ahead and took my 2nd dose like I'm supposed to. I woke up on Sunday morning and had a headache, was nauseous, and very dizzy. I knew it was from my medicine dosage and thought it would wear off in a few hours. It didn't. I missed sunday school and church. The boys were so good though and played so well together which was a blessing. I could barely stand up to even fix their breakfast. My doctor was not reachable so I called the drug manufacturer and they had a pharmacist call me right away. He said it was just taking my body a little longer to eliminate the drug but it would be gone in a few hours (this was 10:30am). Nothing had changed by 5pm. I called again and talked with the same pharmacist and he told me the problem was not from the drug because the drug is so fast acting that it was out of my bloodstream and it was something out and I should get it checked out ASAP. I thought about it, talked with Brad, thought about it, and then realized I waited all day and it wasn't even a tad better so why would it be better after sleeping. I wasn't about to take the medication again that night in case it was the medicine and it might have an additive effect. I needed to teach on Monday morning so I decided the ER was the right choice for me. Problem: how do I get there when I clearly can't drive (I could barely walk) and my mom can't take me because some needs to be with the kids who I just put to bed? I had to take a stupid ambulance!!!
To make a long story short, the Orange Park Medical Center was so amazed at the medication that I was on that they had never heard of that they pretty much just focused on that. I did have 2 awesome church friends (Christina and Mrs. Linda Ferguson) meet me at the hospital and these crazy women stayed with me from 8:30ish until I was released at 2am!!! Now that is a friend. Needless to say, they didn't know what was wrong and thought it was the medication. I canceled my JU class which I felt HORRIBLE about and then went to bed by 3am. I spoke with my dr on Monday morning and he said it wasn't the new medication and then made a phone call and sent an e-mail to Stanford (where all the really smart people in the world of narcolepsy and this drug are at). Someone from Standford even called to talk with me. All day monday I was crazy dizzy but was able to eventually eat some saltines and 7-up. Tuesday morning was still pretty bad and I was getting so discouraged. I literally couldn't do anything. Even shutting my eyes made me really dizzy. By Tuesday late afternoon I started to feel some relief and that was great. I was taking zofran around the clock because I was so nauseous that I couldn't even eat anything which I'm sure wasn't helping the dizziness.

On Wednesday, it was Eli's 4th birthday. Mrs. Chari, Eli's teacher, is so awesome and made a sign for the door since 2 kids in her class had birthdays this week. Eli had a good day (I left a balloon and play-doh for his class) on Tuesday evening. I barely made it through work on Wednesday and thought I was going to pass out a few times.

Once Aiden got home from school, he helped Nana and I wrap presents for Eli and then decided to make a tent for Eli's puppies. While I went to get Eli, Aiden and Nana made this tent for Eli and decorated it. It was so thoughtful of Aiden!! I'll write more about Eli's birthday in the next post.

I took this picture on Thursday. Here is Aiden peeling his carrot that he was having in his lunch on Friday. No he wasn't eating the whole thing but I love how much he likes to help in the kitchen.




This week has been so crazy with me feeling so incredibly horrible for a few days and then trying to prepare for Eli's party which was difficult because the RSVP list doubled after the please respond by date. I don't get that. I had wednesday as the cut off date and got 3 RSVP by then and then got 1 one Thursday night and 2 on early friday morning. I had already made all the goodie bags so then had to go buy more stuff. It was all good though. Eli had an awesome birthday party today. I'll write about that in a few days hopefully.

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.