9/23 - Eli's 4th birthday

Wednesday was Eli's actual birthday. On Tuesday afternoon I brought a balloon and playdoh (little containers for all his class) so that he would have something to share with is daycare friends. I only get to see the boys for about 15-20 minutes in the morning so it made me feel slightly better planning ahead and leaving something at daycare. My mom cooked a yummy dinner made up of spaghetti and meatballs, garlic bread, and green beans (all his favorite). We then skyped with daddy to sing Happy Birthday to Eli and he got to have a big cupcake that Nana made.

On Thursday Aiden and Nana help me put up the Cars scene. This thing is about 9 ft tall and about 15 feet long. It's huge and takes up the entire kitchen wall space.

We had Eli's birthday party at our house on Saturday. We invited his daycare friends (12) to help celebrate. Most of the kid friends that we have at church are Aiden's age so I felt like it wouldn't really be Eli's party so I invited his class. So I must ask - what is the problem with RSVP's these days? In Alabama I had almost no RSVP's for Aiden and a ton of people came. For Eli's party, I did have 3 RSVP by wednesday (the please RSVP by date) and then another 1 on Thursday evening and 2 on Friday morning. Needless to say, I had already made the goodie bags and bought stuff for the party on Wednesday and then went back out on Friday and had to buy more stuff to make sure we had enough.

I went to set up the backyard in the morning (the party was at 10am) and saw how wet the grass was so I decided to try and blow it dry. That wasn't working out so well so then I decide to just quickly mow it. Well, that didn't work out so well either because it was so wet that the grass wouldn't shoot to the bag of the bag so I was having to empty the bag every lap. On the bright side, our backyard looked great!! :) Our first guest arrived promptly at 10am. I had a trampoline set out, a bean bag toss game, and little race track boards I made earlier in the week (which I found on Pinterest).

After it seemed like most of the kids were here, I asked if anyone wanted to make a race car to eat. I got a few strange looks and then showed them mine and then a bunch of them wanted to make it. I was actually going to make these ahead of time and have for snacks and then Aiden suggest we make it a craft. Great idea. It's just an apple slice, with 2 tooth picks in it and 1/2 grape stuck on the end of the tooth pick to act as tires. Here is Aiden sowing me his. It was fun meeting the other mom's and dad's from the class although I really didn't get a chance to talk to anyone since I was running around do random stuff.

Mike and Arin (and Grace) came as well and they showed up and Arin iced a bunch of mini cupcakes so they would match the awesome car cake she made, and Mike just went out to the backyard and picked up a ball and started playing with some of the kids. That was awesome.

There was one other daddy there too and he was playing ball with the kids too which was great. The little race car track things turned out pretty good. I just spray painted 2 pieces of wood that Brad said I could use and then glued pipe cleaners down the side and middles so that the cars wouldn't fall off the track or crash into each other. I then propped one side up on a stool and brought out a small basket of cars and we were in business.

Arin used a cake mold that we had and made Eli a really cool race car cake. I think the funniest part is that when I was trying to find the pictures of when we used the mold before (and Grandma Jo decorated it) I found out it was for Eli's 3rd birthday. Haha. He didn't care and was excited about it. We were going to do Mr. Potato Head theme and then he changed his mind a few weeks before his party. Now he's says he will do Mr. Potato Head when he turns 5 but I keep telling him he has a while and he might change his mind before then. The cake turned out awesome!!

Here are Eli (left, green shirt), Aiden, Grace (far right, purple shirt), and Reagan eating some cake. My mom even bought little ice cream bowls for them too.

It was getting a little hot outside and I already moved all the tables from under the patio out to the grass since there was more shade out in the yard than under the patio but now it was just getting hot. Change of plans. We brought everyone inside after they were done eating, and let Eli open gifts inside. Eli was taking his sweet time eating so he was the last one done so Mr. Mike gave him first class service by bringing him inside in while still sitting in his chair.

We let the kids come over and take pictures in front of the giant Lighting McQueen/Cars scene and most of them did. I'll return those pictures in the thank you cards!

Aiden was an awesome helper and opened the front door to all our guests and then showed them to the back yard and put their presents on the table for Eli.

This was Eli's first party with kids his own age and he was a little overwhelmed a few times. Other kids were opening his presents and he didn't care too much. He would open it, someone would take it and look at it and it was all good.

 He actually even came up to me at one point and just gave me a hug and stood by me because he was so overwhelmed. There ended up being 9 kids including Aiden and Eli.

 Overall he had a great time. My mom, Arin, and Mike were a huge help. Oh yeah. Let me comment on that a little more. Mike was helping hand presents to Eli and was taking the old paper to throw it away and stuff and someone says, "doing a good job dad." I didn't think much of it but then I realized someone really did think he was Eli's dad. Another woman starts looking up at the huge family picture over the fire place and is seeing that Mike is not the guy in the picture. We finally had to clarify that Eli and Aiden's daddy was gone but they Mr. Mike was doing a great job of filling in for a few hours. It was too funny.

 I was so glad Eli was letting the other kids play with all his stuff although he was (and still is) possessive about a Cars 2 car.

After he was all done opening present Eli comes to me and says, "can I open one of my presents?" I say sure what do you want to open? My new nap mat. This kid got cool Superman outfit stuff, a musical guitar thing, and a few Cars and Planes toys and he wants to open the nap mat.

 Thankfully Mike and the other daddy (John I believe) helped put all the toys together.

And this toy by Eli is the winner. It's his favorite (and Aiden's) toy. Eli had a blast and his friends had fun too. I think I am making a deal with myself though and anymore birthdays that daddy is not around, I give myself permission to go have them hosted at some other place so I don't stress as much.

I meant to take a picture of the goodie bags. We had mainly food in them Luigi's Tires (oreo cookies), Mater's Tow Cables (red twizzlers), Cars gummies, and Red Light, Green Light Playdoh (the home made stuff). At least it's stuff that kids will eat and won't be thrown away.

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.