We do love our lazy Saturdays! We completed our first week without Daddy by barely leaving the living room. M and I got in some great cuddle time while Liz was watching TV or on the computer.

While Liz and I cleaned up in the living room and vacuumed M got into some mischief. Of course, he didn't view it as that. We don't usually have soda cans in the house so he must have thought these were new toys!

I love his new found interest in lining objects up and organizing. He experienced a bit of frustration a few times during this. He would try and pick them up and only put them in one box. They wouldn't all fit and he didn't think to put them in the other box. He would yell a bit then give up and make a new row. After awhile he lined them up the other direction (bottom left). Then he would take the last one on the right and moved it to the left. Except, every now and then, the cans would roll away. While he was working on this last one, after I finally stopped taking pictures, I cleaned up the cans behind him and put them in the pantry. When he noticed we had another fit to deal with :) I left him 4 cans to play with but they quickly got boring. Later, when Liz and I decided to actually drink a can he got so excited and tried to take it. Now, we can only drink from cups it seems. :)

TDY days 3-5 - Getting By

The last 3 days have been pretty uneventful. Tuesday M had his audiology appointment. To sum it up - He didn't cooperate. We knew he wouldn't so it wasn't much of a surprise. He is now being referred to Nashville's Children's Hospital (Vanderbilt) for a sedated hearing test. Hopefully it won't take long for this appointment to get made. We are anxious to know how well he hears. 


My daughter has been home sick for the past two days and will be tomorrow as well. She does not do well with spring pollen season here. Her allergies are awful. We've done a lot of laying around. 

Michael has been a lot cuddlier (real word right?) than usual. He has always been a big lovey Mama's boy but even more so now. We think he's clingy because he is missing Daddy. He's been Skyping with him every day. He really loves it. He watches Matt and responds to him. He discovered where the camera is and likes to get really close to it. I think Matt has gotten some good screen shots that I'll grab when he gets home. 


Food of the week - Mashed Potatoes! I can mix anything in them (meat, veggies, stuffing...) and he devours it! He gets on these little kicks from time to time. Keeps things interesting!

Survival Mode - TDY day 2

At 7am my alarm and Elizabeth's went off and woke M. Being tired from the night before I hit the snooze once before getting up. By the time I got to M (about 10 minutes later) he was already a bit of a wreck. He was better (since he got a great night's sleep) but crying already. The crying, however, had nothing to do with being sleepy and more to do with being wet and knocking his mattress off his bed again. I guess the diaper trick just wasn't enough but its only the second time in about 1.5 weeks that I've had to change the bedding. Much better than daily!

He was very helpful and removed the sheets before I got there. Less work for Mommy! Notice the wetness going up the back of his shirt? The whole right side of him was soaked. Even though that spot was very wet, the rest of him wasn't, which is an improvement. Normally its a head to toe type of soaking. 

After he left the room, still grumpy from his uncomfortable awakening and having to change into clothes immediately (he prefers to be lazy in pajamas) he walked into the living room, right into the nice surprise one of the cats left for us (don't worry, no pictures!) 

So today became about just getting through it with as little drama as possible! When his sister left for school he wanted to go out. 8am walk for 20 minutes, stop by the park for an hour and another walk home?? SURE! It was chilly but he wasn't complaining! That's what fleece-lined pants and jackets are for!

He wasn't thrilled with the park swings though. They are higher up than the ones at home so his feet couldn't touch the mulch to stop himself. After a couple pushes he wanted to be done and head back to the slides. 

When it was time to go back home he wasn't happy at all. But he was getting to the point where going up the steps seemed to be taking a lot of effort and he only wanted to go down the one slide that was still flooded with water from our weekend rain. He pouted the entire way home.

But it's such a cute pout!! 

After we came back home we got Daddy on Skype! Yay! When Matt was deployed last time the biggest reaction we got on skype or the phone was Michael giggling when he heard his Daddy. This time around he is a little more aware. At first, when he heard his voice, he just giggled and ran around. Then Daddy called "go go go" which is what he says when he is chasing Michael around. It triggered an immediate response and Michael ran the circle around our kitchen and living room. He'd stop by the couch and wait to hear the next "go" then run again. After awhile he joined me at the couch to listen to Matt some more. He was playing bashful, smiling but burying his face against me. He'd sneak at peek at Matt now and then and then hide again. Finally he really made some eye contact and started being silly with Daddy. He was copying the motions Matt was making with his mouth, clapping with my assistance while Daddy was. It was great. Then he tried to find Daddy. He kept looking behind the monitor. When the call was over he was a big grump, wanting more time with Daddy. 

To calm M, I attempted lunch. Meals are tricky on a good day but on a grumpy day they can be awful. So I just kept trying different things. Cheetos, mashed potatoes and cinnamon rolls with some grape Kool-Aid. If that's what it takes...go for it!

Happy boy now! 

There was no nap again today but he did calmly lay in his room for about an hour. It seemed to make him happier, rested. He sat back down at the table for afternoon snack and I gave him the rest of his uneaten Cheetos. Instead of eating them he turned them into a game! I was too thrilled with his deep concentration that I wasn't going to stop him. 

He lined them up, sorted them into piles or different bowls and stacked them. It wasn't until now, 2 hours and one outside playtime later, that is he actually eating them. 

When his sister got home from school we all went outside. She tried to get some homework done while laying on the grass and M and I played chase. After awhile he needed his sister to help with the game!

Daddy even called while we were outside and got to hear the giggles. 

Dinner went off without a hitch. Elizabeth had a lasagna meal she had picked out awhile ago and forgotten about. For Michael I gave him more mashed potatoes and chicken. Neither kid finished their plate so their leftovers were my dinner. Okay, maybe not the healthiest way to go about it but there was no rejection and no fits! He is now calmly running his nighttime laps around the kitchen/dining room and winding down for bed.

He took his meds and got ready for bed like a pro. Here's a picture of the overnight diaper and the plastic undies over them. He looks so thrilled to have them on huh? :) That's Daddy Bear on the dresser. We decided to use it for the bedtime routine since Daddy is working night shift and won't be able to call. So far, so good though. He is quiet in bed, hanging out with his favorite seahorse toy.

Tomorrow should be uneventful. He has school in the AM, a doctors appointment then we'll head to Liz's tennis. Hopefully Sunday was the only crazy day!

Daddy's on TDY - Day 1

Michael's daddy left for TDY (training) for 2 weeks. We had to wake up at 2am to see Matt off and it took Michael awhile to fall back asleep. So between very little sleep, having a cold, and not having his daddy....M had a rough day!

For our first attempt at calming Michael, we put him in the bathtub. It was about 9am and he had already refused breakfast and was a beast. He didn't feel the absence of his daddy yet, since he is usually at work at that hour, but he felt the effects of little sleep and his cold. 

But bath was very short. I don't think he even moved from this spot. He had fun putting his hand under the running water then putting it to his face but as soon as the tub was full and the water turned off he cried. He drained the tub and we tried one more time but it was another short lived bath.

Our second attempt was outside play! Yay....usually. 


He was pretty grumpy in the yard so I had to carry his crying, pouting self to the park before he realized he still liked the swing. Today's swinging had more of a love-hate feel to it though.

He did recently discover that he can touch the ground now so he loved having me push him then he would stop himself. Then we'd do it again :) 

After returning back inside we attempted lunch. At first, I thought he would reject it. I went for a comfort food that is almost never rejected: peaches and strawberries 'n' cream oatmeal. I also made myself a frozen lunch of chicken and potatoes. Because he always loves to surprise me...he ate BOTH! He hasn't eaten much meat in probably a year. It is always nice when we get some in him so I gladly sacrificed my meal. 

During lunch he really looked like he was ready to finally pass out. 

But of course, that would have been too easy. Instead, we spent the next few hours pouting, crying and fighting sleep. And yes, I said WE. I'm sure I did quite a bit of pouting too. 

Does this face not say "I'm exhausted!!"? Sure does! But never once did he sleep. 

Liz and I decided to try a car ride since he kept running to the car every time we went outside. It worked! We drove for 90 minutes, with a brief stop to pick up a chocolate banana shake from Sonic for the kids to share. We drove and drove and drove and he never fussed once. We returned home and it was looking promising while I was cooking dinner. The dinner he never ate. The dinner that seemed to remind him that he was cranky. 

Oh my poor little bear. He destroyed the shoe rack. He was even laying down with the shoes by the door. He can get a little dramatic at times but it was over the top today. I think at this time of night he was realizing that Daddy had not made an appearance. So I made his medicine and Liz and I put him to bed. We attempted to recreate the bedtime routine that Matt and I usually do. Liz was great. We're very fortunate to have such an amazing, caring daughter. She has her normal disagreeable kid moments but not when it comes to helping with her brother. 
Can you tell he is ready to sleep?

Sadly, he didn't seem to know it! It still took about two hours, a stripping act, a poop, the mattress being pushed off the bed a few times, a phone call with Daddy, a lot of crying and cuddling and Daddy Bear (the kids' talking bear with Matt's personal message to them) to get him to sleep. 

But he's finally asleep :)  We can only hope that if he gets a normal night sleep he will have a better day...until he realizes he still has 12 more without Daddy.

More Stacking!!

Michael woke this morning, insisted that his plastic diaper be removed immediately, then headed to the floor to build with his blocks. We love his interest in toys now! He still prefers the non-toys (organizing my silverware, looking through different colored objects and running laps around the kitchen/dining room) but he is seeing toys for what their intended purpose is. He gets mighty frustrated when the blocks fall and refuses to play with them for awhile afterward (like they're having a fight!) but he is doing so much better with them!

Mission: Fixing the leaky overnight diaper!

Michael is no where near potty training. Since he learns through observation, potty training is going to be a long road. We sit him on it quite a bit and sometimes, after a long sit, he will actually pee. We cheer, clap, do a little dance and hope he realizes why we're doing it and might repeat it someday. But, again, it will take awhile. 

So we've run into the problem of him outgrowing diapers. He wears a size 6 and they do fit great during the day. We change him every few hours. At night we put him in overnight diapers. For the past few months he has woken up SOAKED every morning. I mean, head to toe, all his blankets and bedding. That's a lot of laundry! Every...single...day. 

We figured he needed a larger size diaper. Sadly, 6 is as big as they go. We tried pull-ups. Since they are designed for children who, more or less, know how to use the toilet but might have an accident, they do not hold much liquid. (Side note: HE LOVES PULL-UPS! :) Mostly, because he can pull them up and down!) I've been reading online different ideas people have come up for this same problem. (Good to know it is not just us!) Some bought adult diapers but most were too big. Some doubled up on diapers. A couple even put sanitary napkins inside the diaper for extra absorbency. We are trying a different route. 

I purchased these Waterproof Training Pants this weekend. Now the size on them says only up to 33 lbs and Michael surpassed that awhile ago. But when Liz and I opened the package in the store they looked huge. Sure enough, they fit great! I remembered trying these with Liz when she was potty training and hated them. I did not enjoy carefully pulling the pee filled plastic diaper down her legs, along with soaking wet undies. Thankfully, she figured out toilet training quickly so I got to throw them out!


But Michael's scenario is different. Since we put these over the diaper and the diaper still traps most of the liquid the Waterproof pants aren't soaked. They are wet but not dripping. Now when we get him up his clothes and bedding are dry! We just have to wipe out the diaper (in the sink or with a wet wipe) and let it dry for the next night. SO much easier then doing a load of laundry.


Now I don't think I'll be getting a picture of him wearing these any time soon unless I take a sleeping picture. They're confusing to him because they make noise. So we slip them onto him after he falls asleep. Yay for having a deep sleeper! We just take off his pants, slip these on, redress him and we're done. Hopefully soon he will keep them on when he is awake. As it is now, we put them on at bedtime then go check on him a few minutes later and his pants and the Waterproof pants are off. At least he leaves his diaper on! :)

Michael's New Table

Michael's Grammy bought him a new table for Easter. He WAS sitting on the bench nicely until his bubble machine got blown over by the nasty wind we're experiencing this weekend. By the time I got over there with my phone to take pictures he was on the table playing with the bubble solution. But he does LOVE the table. He has such a fun backyard. He got some play time in with his sister while Matt and I did some much needed weeding and mulching.

Michael's First School Dance

The kids had their first school dance last night. It was too cute! Michael spent most of the night running around, with a tiny bit of dancing like movements :) He really loved chasing down the balloons that were all over the place. Surprisingly, none popped on him! We really thought he'd get a couple pops since he fell on them, laid on them and kissed them!

Dancing!!

Pretty lights on a BLUE wall! Oh he was SO excited about this
until a group of parents sat in front of them and he couldn't
access them any more. 

Check out Elizabeth's Dance here!

Learning from the best

 Big sister showed him how to make a fist, the number 4 and clapping

Some early morning singing/yelling

Remembering it's morning and laying back down with a big yawn!

I ♥ their time together!

Time to upgrade Michael's stroller!


Michael is currently still in his baby stroller. That thing has seen better days! It's weight limit is 40 lbs and he has just about reached that. It is also starting to make this awful clicking sound when he rides in it. The sound is not there when he is out of it so we're thinking it is the seat bouncing in a way it should NOT bounce when he is seated. We've been toying with the idea of getting him a new one but weren't sure what to buy. Most go up to 50 lbs but it seemed silly to put so much money into something that wasn't going to last long. We needed something rugged too. Since we're a DO DO DO kind of family and out and about a lot this puppy needed to be able to handle grass, gravel, maybe the occasional tree root. We were turned onto this page to get an idea of what we might need. After reading this article we decided a jogging stroller, with the 75+ lbs weight limit was the way to go. We noticed a lot don't have the front bar attachment, some didn't even look like we could order one and have it put on. We'd also need a top cup holder/compartment for all the items we carry with us. We're on a hunt for one that can get attachments added on. Most seemed to have a basket underneath, which is a MUST HAVE since we still have a diaper bag. It would also need the wheel to be underneath and not in front since Michael likes to put his feet in them. 


Since most of these strollers are out of our price range we decided to ask for assistance. As his expenses get larger, and insurance doesn't cover it all, it is getting harder for us to afford. We never realized how hard it would be to ask for help. We've added a donation tab to the page on the right side. (Assuming I got it working correctly). Thanks, in advance, from Matt and I. (M and Liz too!)

♥ our doctors!

During our vacation we encountered security in DC. While emptying Michael's stroller did not bother us one bit, it was frustrating explaining to the guards why Michael wouldn't walk by himself through the metal detectors. Then we had to deal with 'the looks'. The ones where we can tell they don't believe us because Michael appears so 'normal'. I wanted to say "Spend a few minutes with him and you'll SEE. Or, perhaps, I can let him out of the stroller, aim him in the right direction since you won't let me walk up with him, and see if he actually does what we're hoping (which we know he wouldn't. he would have bolted in another direction or clung onto me)". Instead, I smiled politely and kept explaining. I swear, if one of the guards wasn't so patriotic and thanking my husband for his service and what not, we wouldn't have gotten through. Of course, lining my son's stroller up to the detector and giving a good shove to Daddy waiting on the other side wasn't much better. We decided we needed 'proof' that Michael has a disability.

While talking about this with his teachers, because we didn't know if we needed to get proof from them as well as his doctors, ANOTHER issue arose. In the school system if your child's doctors can't come up with a diagnosis for why they are developmentally delayed, then around the ages of 8-9 your child can lose the special education they NEED. They will get put into a normal classroom with just an aide and teachers will pass them on through. Since Michael has only been diagnosed with Epilepsy they think the school will drop his extra care if we don't get a reason WHY he is delayed. Apparently, since he hasn't had a seizure in over 2 years, it is no longer a 'good enough' reason for him to be behind. While that IS annoying to hear, we do agree there is probably some other reason why he is developing slowly. (It just IRKS me that the school won't accept Epilepsy as a reason to need special ed). So today we went to the doctors to see about about both concerns. 

I'll start by saying, we LOVE his PCP. We NEVER feel rushed in her office. Her nurse is an amazing man with so much patience. It takes a long time just to do his blood pressure and pulse ox. Heck, half the time we can't even get him to stand on the scale or get measured! These two are amazing. Now we see her a few times a year so she knows us well. She was as annoyed with the situations as we were. The first was easy enough to get a quick fix on. She wrote a document stating his condition and needs that we will keep with us until we get something more permanent. Eventually, we'll get a handicap sticker. Soon enough, Michael will be too big to carry around. But the document will be nice to show people when we're already inside a building, asking for a handicap table to put his stroller up to because he can't fit in the high chairs anymore.
The school issue is a little trickier. His Dr. was not happy that he is still only receiving speech therapy. No one wants to take him on for physical or occupational since he can't understand what they are asking him to do. For  2 1/2 years we have heard this. So she will be dealing with the school. She also ordered a hearing test....another one... :)   so we can prove he CAN hear. That way, it shows he is capable of hearing us, he just isn't understanding us. He will also be seeing his developmental pediatrician (another doctor we LOVE) and get his opinion. They are thinking Autism right now. But nothing is being confirmed yet. She is ALSO putting in referrals with our insurance to cover physical, occupational, speech and ABA therapy. Some of these will be at Vanderbilt (over an hour away). Yay for having neighbors who could help with Liz, for Liz being almost 10 years old (in case I need to leave her alone for a short time) and for my husband's unit being VERY supportive (when they're not deployed or on TDY).
Today feels like a win. Even though we have new concerns (or perhaps old ones resurfaced) we have a great team working with us. 

Learning Pat a cake!!!

When he is by himself he claps his hands together (a big feat in itself!) and when he is with Matt or I he tries to clap one of his hands into one of ours. He can't do both his hands at the same time when he is hitting ours. What is also exciting about this is the fact that when he hears the song he knows to do it. Also when he hears If You're Happy and You Know It he will clap!

Babbling Video!

This is posted a little late, I know. We finally got some babbling on video and it has taken me forever to post it here. I managed to upload it to facebook but that was it. Now that vacation is done and we don't have another one coming up until the end of June, life shouldn't be so hectic. He 'talks' SO much now. We hear more consonant sounds than vowels. Nothing is done with direction and purpose yet but it is such great progress! ♥

Road trip Vacations with Michael

In the past 5 months we have taken 2 major road trip vacations. One was to New Hampshire. Two days of driving and a week up there then two days back. We stayed in my parents house and the kids shared a room. The second vacation was our recent trip to Virginia Beach and DC. One day of driving, 5 nights there and one night back. Every night in a hotel. We have learned a lot of Dos and Don'ts for traveling with Michael.

Since returning from this last trip Matt and I have been discussing the pro's and con's of each trip as it relates to Michael in hopes of making our summer trip to Texas smoother. We know that the more trips we take the easier they will become.

Things We Have Learned


~Staying in the same place for the entire time is good! On the NH trip, aside from the night in a hotel to get there and back, we stayed in the same house the whole time. That helped Michael know what to expect in terms of feeding, bath, bedtime, play, etc. When we went to Virginia we stayed in different hotels. At the second hotel he was confused. He went a little nuts in the room, slamming doors, banging the mirrors, fighting to get out. At the beach hotel, that we had stayed at 5 nights he was fine. He accepted the room, learned where his bed was, where he could play, where he ate, etc.


~Being able to prepare our own meals at our own pace is best. I won't say he was a GOOD eater in NH but a BETTER eater than VA. We had the ability to make our own food, try different things and eat at our own pace (and position! Michael felt more comfortable sitting on my lap to eat) in NH. We tried to utilize the microwave in our hotel room in VA but it wasn't enough. We would buy an item from Walgreens to prepare for dinner and he wouldn't want it. That left us with no food, having to come up with something else for him to eat. Or having him go without dinner for the night. When we went out to dinner somewhere he rejected everything (aside from mashed potatoes). Two nights and a row he had mashed potatoes and a bag of chips/crackers for dinner.


~We were decently prepared for the car ride to NH. We had snacks and a DVD player. We were even better prepared for VA. We had MICHAEL'S DVDs and a cooler to hold drinks so we didn't have to buy them at gas stations. We had snacks but have learned that he really doesn't eat in the car. We also learned that he copes much better if Matt or I sit in the back and Liz sits up front. That works fine for whoever is driving because Liz is great company up front. It does not work so well for the parent in the back. Matt is LONG and gets uncomfortable back there and I get car sick in the back seat. But we suck it up and do what is best for Michael, and easiest for the long trip. We also know it is best to get as many hours in as we can in one day. The first day is the easiest. The second starts out with A LOT of protests, no matter what we do. Knowing all this now, we think the trip to Texas will go smoother.


~Doing too much is not good. Every day we did something in NH, went somewhere. For Michael, that is hard. He becomes stroller bound a lot of the time. Or we went to places where he could run around but not understand what we were doing there or didn't want to follow us. It forced Matt and I to split up and have one parent with one kid each. At Virginia Beach we were more relaxed. We went where we wanted, casually strolled around, letting Michael decide where to go and left when he was done. We went to places designed for him. Occasionally, we have to split up so that Michael could sleep and Liz could get some time to do her stuff, but mostly we enjoyed the vacation together. As soon as we got to DC he was a wreck. He couldn't walk the streets with us or he didn't know what to do in the big open grass areas. It was a lot of crying. Now we know, while we CAN go to places where Michael is in a stroller most of the day (museums, amusement parks, etc) every now and then, we need to plan MORE days for Michael, that Liz can have fun at too. 


~When in the hotel, at bedtime, we learned to be prepared to go to bed early or have some small handheld entertainment when putting M to bed. Even then, he might not let us use the item (ipod, phone, kindle). He might want the room completely darkened, both parents laying in bed with him, his sister silent...and even then it make take an hour or two. By the time we got him to bed, after laying in the dark for that long, we were ready to go to sleep too! No late nights on vacations! That was fine though. We just started our day earlier.


~Have a POOL nearby! Yup, that's a big one! We all love water! We spent hours in the hotel pool. He could float around forever. I don't think it is possible for him to be grumpy in water. 


We are a vacation loving family. We learn more about how to make these trips better for our family each time we go. Hopefully soon we will have it down to a system and know all the tricks to make these trips as enjoyable and stress free as possible!

An amazing Boundless playground at one end of Virginia Beach

Checking out the water

Down the ramp, across the sand, up the stairs and repeat

Oh how he loves trucks!

And whenever he was 'done' we just walked back to our room and let him pass out

Epilepsy Walk 2012

We went to our first Epilepsy Walk this year and we hope to go every year we can now! What an experience!! It was nice to see other people living with the same/similar condition(s) as my son. Everyone had such a positive, uplifting attitude. No matter the severity, the differences from person to person, they were so cheerful. It's so good to know their are so many other people out there who understand what my family and I feel and experience every day. No judgement. No sideways glances of disapproval. No questioning why we do things the way we do. Only understanding, patience and joy. We, obviously, knew these families existed. We follow their blogs and forums. But to actually MEET them...! Ah! Words can't adequately describe how wonderful it was!