Thursday, July 2, 2015

HOPE!

Today was another good day! For the second day in a row, the evening hours were peaceful. I have not described our evening hours as "peaceful" in a very very long time. Could it be? Could this medication be helping? We are sooo so hopeful.

I've been super aware today, mentally noting every little thing about Elijah's behavior. Maybe these are things I would have just overlooked on an ordinary day, but.. I noticed some differences today (in addition to the attitude improvement and PEACE). Despite looking tired (yawning a ton), E never looked groggy or glassy-eyed. Usually when he is tired, he also has a zoned-out look and his eyes glaze over and he shuts down.

Today he also seemed to be MUCH more aware of his surroundings. On the way to an appointment this morning, he looked out his window and said, "LOOK! There's Valleyfair over there and LOOK how green those trees are! And there's the river!" On the way back home I noticed that he was craning his neck to look through the front window of the car. I asked what he was looking at and he said, "Weird! It looks like there are puddles in the road, but then they disappear!" These are things that I don't think he would normally observe, especially when tired.

We have regressed a bit with night-time pottying but we are still getting up multiple times/night, so he is definitely tired. If behavior is as good as this when he is tired, I pray that it can only improve.

There were many times tonight when I braced myself, ready for the usual showdown. When it didn't happen, I almost didn't know what to do with myself! I'm cautiously thinking of what I might be able to do with all of this extra energy!

Hopeful hopeful hopeful!

Wednesday, July 1, 2015

Carefully hopeful

Today was...uhhm, AWESOME! I noticed some major positive differences in Elijah today and I can't help but think this new medication might be helping. Dan and I are feeling cautiously hopeful. PLEASE pray with us that this med will help out our precious oldest boy and his family!

I'll give an example from the day..

We were driving home from Elijah's OT visit. Elijah typically earns a small toy at the end of each session if he has a good attitude. Today he picked out a figurine from the movie Home, which both boys loved. E was playing with the toy in the car and Sammy swiped it right out of his hands. I clenched up because 99% of the time, Elijah will respond to something like this with either a raised fist, head-butting, very harsh words...or all of the above. I turned my rear-view mirror toward him immediately in anticipation and I was SHOCKED at what I saw!

Elijah calmly said, "Sammy! You took my toy! Mommy...will you please help me figure this out?!" Uhhh....WHAT?! I talked them through it and gave Elijah huge high-fives and praise. Wow! 

The entire day was filled with scenarios like this. I have been praying all day that this is not a coincidence. Please, God! Please pray with us. We are very cautiously hopeful tonight!

Tuesday, June 30, 2015

Berries and behavior

Soccer and swim lessons are done...hooray! It's sad, too. Sammy cried at the thought of not seeing his teammates again. He does not like change!

On a fun note, the boys and I picked berries for a Hope Kids event yesterday. It was fun and filled with flying beetles that were VERY attracted to Sammy. Despite that, we loved picking juicy strawberries. We picked three pints and they are all GONE! Yum!


I love these smiling faces!


We found a heart-shaped berry! 


I met with Elijah's Fraser social skills therapist by myself on Monday and had an unexpected reaction to our visit. I hadn't met with her sans Elijah since February. I explained to her what we experience daily... the fact that none of us really sleep past 4am and that we are often changing sheets and cleaning up accidents in the middle of the night and that we are constantly on edge and TIRED and we never know what to expect with behavior. C literally dropped her pen onto her pad of paper and said, "Megan...this is TOUGH stuff. Your lives are not the norm. PLEASE be easy on yourself."

Ugh...unexpected tears..

I know this, and I feel like I almost try to hide it from people. I never want anyone to feel like we think we are stretched more than anyone else. EVERYONE I know feels stretched beyond their means. Life is crazy for everyone! But things are tough here. C was validating.

I mentioned the medication Dr. M had prescribed and she felt like we should just try it. Why not?! My brain says, "Ha!" I have prayed so hard about this. Elijah is SO sensitive to meds and usually has such a negative reaction, but it is so enticing to try SOMETHING.

Dr. M thought we would know within two to three days if this med wasn't a good fit. This morning I handed E the capsule and prayed, "If he can't swallow it easily, it's a sign." He swallowed it easily. Overall, behavior today was slightly above average. We'll stick with the meds for a few more days before committing.

To be continued!

Wednesday, June 24, 2015

A few random things about today

- Elijah dunked his head under water FIVE times today during swim lessons! His teacher was sooooo shocked and excited. Brave boy.

- I took Sammy to kindergarten intake today and he did great. He was so stinkin' cute. He is certainly ready for school.

- While Elijah was in OT, Sammy and I ran out to the post office. On our way to the car, he started running quickly down the sidewalk in the opposite direction of our car. I yelled, "Sammy?! Where are you going?" He yelled over his shoulder, "Don't worry! I'm just takin' a long-cut!"

- The boys have been talking about the two high school graduation parties they went to on Saturday with Dan while I was shooting a wedding. I noticed today that instead of "graduation," they have been saying "congraduation." I like it!

- The boys were playing "doctor" with me tonight. Sammy was my doctor and Elijah was my mom. Sammy gave me about 10 shots and then went to test my reflexes and said, "Ok, I'm going to hit you REALLY hard now!" :) Elijah said, "Umm, I think you're a REALLY bad doctor!"

- We had mostly really great behavior today with just a few hiccups. I'll take it!

Tuesday, June 23, 2015

The past TWO weeks in numbers

3 trips to the swimming pool
8 swim lessons (E)
2 visits to child psychologist (E)
2 visits to Fraser - social skills class (E)
2 visits to OT (E)
2 visits to PT (E)
1 visit to pulmonologist (E)
1 visit to development pediatrician (E)
1 visit to pediatrician (S)
2 photo shoots
1 full day of wedding photography
6 blog posts written
4 soccer games (S)
1 birthday party thrown
7 trips to the gym
10 loads of laundry done
5 trips to the grocery store
2 photo sessions edited
4 parks visited


Summer has been soooo crazy! We are enjoying it, but wow! Swim lessons end this week, so next week will be a bit lighter. But then we'll be getting ready for our big trip! The little boys and I are road-tripping out east again this summer. First stop: Kentucky, to visit one of our favorite heart families, Evan and Co. Second stop: North Carolina, to visit my dad and stepmom. We are excited!

As you can see from the above list, we've been spending a lot of time in the water. I am determined to get these boys swimming! Both boys have been terrified about dunking their heads under water, so we have been working hard on it. FINALLY, after much coaxing and a bit of bribery, Elijah willingly went under water today THREE TIMES! His swim instructor is going to be soooo happy tomorrow to see this! He also went down a huge water slide all by himself six times and (kind of) jumped off the edge of the pool into my arms. Progress! And have I mentioned that Sammy is actually excited to get into the pool these days? That is such huge progress compared to last year!

We are currently in a night-time potty transition, which means...sleep disturbances. Which means...we are having a hard time controlling our behavior (all of us). Things had gotten a bit better but they are a bit rough again. Don't get me wrong, it is GOOD that night-time potty is finally being addressed. In the long run, this will be a good thing as long as we can stick with it.

I hope you all are enjoying summer! This weather is fabulous. I'll end with a few Sammy funnies:
cardboard = "carveboard"
instead of "fall in love," he says "follow in love"

Tuesday, June 16, 2015

Pulmonology and dev-ped check-ups

Yesterday Elijah had a check-up with his pulmonologist, who he still sees because of croup. We have always loved Dr. K. He is one of the best doctors we have ever gotten to know. I am constantly amazed at and so thankful for our incredible doctors. As always, Dr. K blew my socks off. He is incredibly smart, relatable and kind. He always makes us as parents feel valued, validated and respected. As I talked about E's croup in the past year, he kept saying, "Very interesting." When I finished talking, he explained what he found so interesting. First of all, it is "highly unusual" for an 8-year-old to get recurrent croup (of course!). He was intrigued that Sammy also gets it regularly and severely. Also, according to him, most parents never know when croup is coming and they live in constant fear. I almost always know when it's coming, and I give the boys oral steroids to prevent or lessen an episode. Dr. K was in agreement that giving meds preventatively is absolutely the right thing to do. As for E's croup, although he is perplexed, he feels we are doing everything we can at this point.

He asked about summer plans and I shared that the little boys and I will be road-tripping out east again this year. He thought that was just the coolest thing ever and promised that he would send me a few children's books on CD that his children once enjoyed. What doctor does that? He is the best!

I have to share another little tidbit about our visit.. I brought both boys to the appointment and as expected, they started to fight. Elijah tried to head butt Sammy and a few unsavory words came out of his mouth. Then Sammy was saying, "Mommy-Mommy-Mommy" repeatedly as I tried to talk to the doctor. Dr. K looked straight at Sammy and firmly said, "Excuse me!" then at Elijah and said, "Elijah, you need to chill a little bit, okay?" Both boys quieted. At first I was embarrassed and thought he must think I'm a horrible mother. After the appointment I realized he was trying to help me. He has children. He knows children. He saw me stressing while trying to focus, and he helped me out.

Today we visited with Dr. M, E's developmental ped...another top-notch doctor! Seriously, I cannot say enough good things about his team. Dr. M took tons of time with us. Learning from yesterday, I brought Sammy to daycare so I could FOCUS. Elijah did great! We did not have even a single issue during the entire appointment, which is a pretty rare thing these days. We discussed the past few months...how school ended on a mostly good note and how summer is beginning on a mostly sour note. He suggested another med to "take the edge off," but of course I'm hesitant to try it. Elijah is so sensitive to meds, but the prospect of that "edge" being rounded out a little bit is so enticing. Dan and I have some talking to do.

Dr. M is so good at building Elijah (and me!) up and making him feel proud of himself. He uncovered all of E's accomplishments in the past few months and made sure to give him huge props for everything. This is something I feel like I don't do enough. :( It is so easy to get caught up in the challenging times when we are in the trenches. Dr. M gave me a renewed perspective and I promised myself that I will DAILY tell Elijah how proud I am of him (Sammy, too). I am SO proud of my boys. Despite E's challenges, he is doing so incredibly well...and thriving! It is easy to forget about the hurdles he's jumped over to get to the point he is at now!

As I have been saying, the past few weeks have been challenging. I have been praying so hard for a breakthrough in ANY area. Last night at 3am, Elijah called me into his room, which is not unusual. What IS unusual is that he told me he had to go poop. So he did....IN THE TOILET. This is the first time he has ever done this in the middle of the night. He stayed clean for the entire rest of the night. Maybe our new "system" of taking toys away has been working?! We did a lot of talking about it today and I'm praying last night was a huge step in the right direction. I shared this accomplishment with Dr. M today and he was OVER THE MOON and hopeful about it.

I feel like we are doing EVERYTHING possible to help Elijah feel happier and more peaceful/rested. Please pray with us that we continue to make all of the right decisions!

That's all I have for tonight! Have a great evening!

Sunday, June 14, 2015

Desperate times...

What a weekend! We celebrated Sammy (again) this weekend, this time with extended family and friends. Sammy requested a COW theme for his party (I love this), and of course we complied. I love that he chose something a little bit off-the-wall. He was super excited to have a few friends attend this year. His daycare buds are the BEST!


These four cuties have been going to the same daycare since birth. The boys LOVE these girls! They are the sweetest little things and I'm so glad they have such a special bond with one another.


Birthday bro hugs. :)


The cow piƱata got a beating.


And today we broke out our pool for the first time this year. The boys had a blast! Sammy is so much braver than ever before with water and trying new things. I'm proud of him!


In all honesty, it has been rough going for our family. Elijah is really struggling again, the boys have not been getting along and it seems like there is often some sort of turmoil in our home. Potty issues have regressed hugely, which has all affected sleep and sanity. I know that better times are in store, but until then we are spent.


This will be another crazy week, including three doctor's appointments, three therapy appointments and swim lessons. I think I just need to accept the fact that life will always be nuts!


Elijah started seeing a child psychologist on Friday and I will take him to see her weekly for the next few months. She is AWESOME! Our hope is that she can help him learn some coping techniques that will lessen anxiety and frustration.


You can see from these photos that we had a few moments of summer-time peace today, thanks to Dan and his bubble-making.


Dan and I have had to get extreme recently. Behavior, potty and sass have been OUT of control, so we have taken away ALL technology until we see an improvement in behavior and sass. And every time there is a potty accident, we take a toy away from E. To earn one toy back he needs to use the toilet successfully all on his own. We are going to keep with this until we see improvement!


Early to bed tonight. Thanks for peeking in! Have a wonderful week!