Tuesday, January 27, 2015

A great loss.

I have been crying for most of the day because I cannot wrap my head around the fact that our sweet little heart friend Isaac has suddenly entered Heaven's gates. I met Isaac's mom Kathy way back when I first started this blog. We made an immediate connection and have even traveled across the country a handful of times to see each other. Isaac was born just a month after Elijah and had the same heart defect Elijah has. The last time we saw Isaac was in July 2013 when we went on our whirlwind road trip. We spent four cherished days with the Rollers in Dallas at another wonderful heart family's home. I will cherish those memories forever. None of us had any idea that it would be the last time we would see our snuggly, sweet little Isaac. He was such a lovable boy. I have been in disbelief all day. I can't believe he is gone.

He had a high fever over the weekend, so his parents brought him to the hospital. An infection had gone into his heart. :( They put him on a ventilator and told his family that he wouldn't make it through the night. He passed away a few hours later.

Isaac is the snuggly cutie on the right..

Please pray with us for peace and healing for Isaac's family. They are the absolute sweetest, kindest people on the planet and I want to completely cover them in prayer. I have also set up a campaign for them so they will not have to worry about money during this difficult time. If it is on your heart, please visit the following link and consider making a donation.


Life is so fragile and precious. Make the most of every single day. You just never know..

Monday, January 26, 2015

Facing the storm

I am very cautiously composing this post. We have had some rough stretches in the past few days, but overall Elijah's sleep and behavior have improved since we started incorporating essential oils into our lives. I was a skeptic! I still am! Ha! Maybe it's just a fluke and his brain is finally catching up or maybe the oils really are helping or maybe all of the above. But check out last night's sleep record..

He slept from6:15p-4:30a with very little interruption. AMAZING! I can't even tell you the last time I've seen anything close to this. Today his demeanor was calmer and more agreeable overall. Again, we had our moments, but there was a notable change for the better. I am praying for more of this! Please, Lord!

We currently have an interim pastor stepping in at church and...I LOVE HIM. Ok, I don't really love him, but for the past three weeks his messages have spoken to me in a very unique and meaningful way. One of the things he said yesterday that struck a chord was that sometimes when we are in a storm we need to just stand firm. Face the storm head on. ENDURE it. Don't try to run. Understand that it is part of the journey. Don't complain. Pray, yes, but have faith that it will end and that much will be gained. I have a renewed perspective to do just that. I do believe that this journey we are on serves a greater purpose and that the timing I desire is NOT always what is best. So I have made a pact to myself and to God that I will embrace the struggles we are facing. They are shaping all of us into the people we are meant to be! This is one of my favorite Bible verses..

Romans 5:3-5  “ Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.  And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.”

Dan didn't have school (uhh, work) today, so I was able to get out of the house alone for a bit and it was wonderful. I met a friend for coffee to start the day and I felt like a new woman! I brought Elijah to his second skills therapy session this afternoon and that went great. Homebound schooling (not to be confused with homeschooling) continues this week and next and hopefully after that he will be ready to return to school! Tomorrow morning I will bring E to an appointment with a NEW sleep doctor. I'm excited to hear his thoughts. Thanks for checking in!

Saturday, January 24, 2015

My brave little swimmer!

Dan has been out of town this weekend, so the little boys and I have been kickin' it. I have been experimenting with our new essential oils and...I hate to be too hopeful but I think they might be helping. Elijah's sleep pattern has been different for the past few nights. He has longer stretches and he has not been awake for more than an hour and a half at a stretch. Overall, his behavior today was better than I've seen it in many months. Hopeful!!

The boys both started swim lessons this morning. Sammy started refusing to put his swim trunks on, so I had to bribe him with candy. Once we were at the pool, he said, "I'm NEVER getting in that pool!" I ignored it and when it came time to get in, he was very hesitant...BUT HE DID IT! It helped that his brother was just a few feet from him. Here he is jumping in the pool! Wow! (sorry the video is sideways..)

My two swimming cuties!

A year ago, he never would have gotten this far. Look at my little Sammy! 

Elijah is in the background with his teacher and Sammy is on the left with his..

Look at those kicks!

Sam was so cute. Every time he got done swimming, he would look over at me with a huge happy smile on his face. He would either give me two thumbs up or he would do the sign for "I love you." Not only did I get the I-love-you sign, but I got the DOUBLE I-love-you sign! I made sure to tell him how proud I was of him and he was sooo happy that he had given it his best effort. As we left the school he said, "I LOVE swim lessons! I love this place!" I'm so proud of my brave boy! I know that took a lot of courage for him.

Elijah has done a few rounds of swim lessons in the past few years and hasn't made a ton of progress, so we decided to put him in private lessons this round. He did great today! That boy LOVES being in the water.

That's all for now! Thanks for checking in!

Tuesday, January 20, 2015

Stuff in the works.

The past few nights of sleep have been rough. Ohh our sweet Elijah. :( My heart literally aches for him. I cannot fathom how he must be feeling, operating on such little sleep. It is virtually impossible not to become frustrated with certain behaviors, but I do recognize that he isn't himself right now. Our sweet little boy is in there and Dan and I continue to do whatever we possibly can to get him feeling better. Here was last night's sleep record..

He was awake from 1:30-4:00am. :( Every morning when I pull up the FitBit results I cringe and wince and my heart sinks to my toes.

Homebound instruction begins on Thursday and we were super excited to learn that E's case manager from last year will be the one helping him. WE LOVE MS. W! Yay! We also received a copy of Dr. M's letter requesting the homebound instruction. To be honest, it was a bit hard to read. He listed all of Elijah's diagnoses and explained that due to everything working against each other, he has "severe anxiety" that is severely disrupting his sleep and causing school to be impossible at this point. He requested four weeks at home and for further efforts to be made to keep him at baseline once he returns. As I read through the list of diagnoses, I forgot I was reading about my boy for a minute. Sometimes it seems unfair that he has so much to contend with, but I truly believe that there is a greater purpose for it all. 

We have a lot of things in the works! This week I started bringing Elijah to Fraser (love them!) for weekly skills therapy sessions. Especially because of NLD and the way his brain works, learning skills will always be a huge part of his life. We are starting with learning skills to stop name-calling, blurt-outs and physical aggression. After that, we'll move onto lesser needs like social skills and transitions.

This coming Saturday both boys start swim lessons. Sammy is so nervous about it, but I know he'll do great! We decided to put E into private lessons, as we believe that will get him swimming more quickly. We've had him do a few group lessons in the past few years with no real progress. Elijah finds such peace when he is in the water, so my mama gut tells me to get him swimming ASAP.

I scheduled another appointment with a sleep doctor for next Tuesday. We decided to see a different doctor since Elijah has totally stumped the previous one. I'm going to insist on a sleep study to start!

And the following week we have an appointment with the wonderful Dr. M (developmental ped) to discuss anxiety. I feel like he is going to suggest meds, but I would like to explore a sleep study first.

We also have a few essential oils coming our way, which I'm super excited to try! We are willing to try ANYTHING at this point. Please pray with us that all of the above will help at least tiny little bits in order to help our oldest boy!

I'll end with a Sammy funny from tonight. I told him "good-night" and he replied, "Good-night, Jellyfish Blue. Oops! I mean, Mrs. Cheese." :)

Thanks for peeking in!

Friday, January 16, 2015

Pushing through!

This week seemed like a loooong week. We have three kinds of days lately....ok, rough and really rough. Today was rough. There was a lot of name-calling and icky words/tones. At times I have had to raise my voice because otherwise nobody would hear me! Then Elijah screams, "STOP YELLING AT ME!" Then Sammy bosses Elijah around and Elijah screams, "STOP BEING BOSSY!" Repeat repeat repeat. Yelling, name-calling, screaming, etc.. :(

I was thankful that my sister-in-law offered to have both boys over to her house for a few hours this afternoon. I drove straight back home and sat on the couch and basically did nothing for two hours. I pulled Pinterest up on the iPad and vegged on the couch. It was awesome.

Homebound schooling did not start this week (hopefully next week?), so I have been doing my own tutoring at home with Elijah. It has been a struggle getting him to sit down to do 45 minutes of school work every day, but we are making progress! I came up with a sneaky plan where I place 10 small candies in a bowl in front of him. Every time E whines/complains about doing work, I eat one of the candies. He can have whatever is left at the end of the session. To foster Sammy encouraging Elijah to do well, S gets the same number of candies that E does at the end. Neither boys got any candies for the first three days. Yesterday they got three and today they each got five. Progress!

I brought Sammy to his kindergarten screening today. Awww, my sweet little guy was so apprehensive about the whole ordeal. We were only there for 30 minutes and it was a piece of cake, but being in a school was overwhelming for him. His main issue in kindergarten is going to be separation anxiety. Everything else is great! He did super on all of the "testing" today. One of the ladies who tested him was someone from the special education program who used to come to our home every week to help Elijah when he was a baby! It was so good to see her. She had last seen Sam when he was six months old and she couldn't get over how grown up and sweet he was! She said a couple times, "I wonder if Elijah remembers me? He was such a sweet baby!"

Sammy has shown signs of anxiety lately and I hope it is just a four-year-old thing. He is worried about tornadoes, losing his parents and "bad guys" stealing him from his home. If you knew me as a child, you are now chuckling! He is definitely my sweet, sensitive, worried little boy who needs to feel safe and secure. We are doing our best! We love that boy so much!

We are heading into the weekend tired but praying for a bit of restoration for all of us. Soon, right? Soon Elijah just has to start sleeping better. Have a great weekend and thank you for peeking in!

I'll wrap up with a screenshot of one of Elijah's recent nights of sleep, as tracked by the amazing FitBit. Blue is "asleep" and red is "awake." Ugh..

Sunday, January 11, 2015

Brotherly love!

The past few days have gone like this: up, down, up, down, down, up. We have had good stretches and challenging stretches. E's sleep on Friday night was the worst I have ever seen (and that's saying a lot). Last night was great (for him)! We continue to pray for many more nights of good rest. At this point we are taking it one day at a time, praying for healing for Elijah. We had him prayed over in church this morning and Dan and I felt really good about it. 

These boys love each other SO MUCH. They hate being separated and when they are, I hear, "I miss my BROTHER!" They still really enjoy bath time together.

Introducing ghost-blanket Elijah...

And what is wrong with this picture?

I have a few solid weeks of concentrated boy time on my hands. Please pray that we will all be productive, happy and SANE! We are hoping to get homebound schooling set up in the next few days for E. We are all looking forward to being much more rested. I know it will come!

Thanks for peeking in. Have a great week!

Friday, January 9, 2015

Tooth decay and answered prayers

I feel terrible for our oldest boy. He cannot control the things he does and says right now and he must feel terribly confused. As his lucky mama, I will not give up on him. I will fight for him and do everything I can to support and help him. It is difficult not to become frustrated with him when he has lost control of himself like this, but I constantly remind myself that it is not his fault. He is a sweet, kind, friendly, funny and smart person! Dan, Sammy and I love him so much!

We have had another couple of rough days. I've noticed improvements, but things are overall still so challenging. I have been keeping my shield held high! I received a phone call today that gave me hope and lifted my spirits immensely. Dr. M (developmental ped) called and we had a great conversation. He is an incredible, caring, smart, kind and compassionate doctor and we feel so fortunate to have him on our side. He asked a lot of questions and agreed that Elijah's brain needs an extended break. He faxed a letter to E's school requesting three weeks of homebound instruction. YAY!!!!!

We need to find a teacher willing to come to our home one hour/day for the next few weeks and then we'll be set! Dr. M and I made an agreement that once E is back to "baseline," we need to address his anxiety so that boiling point isn't quite so easy to reach. We have a very timely appointment with him scheduled for February 9th, so a discussion addressing this issue will occur then.

In other news, I brought both boys in for a dental check-up today. Side note: I feel I deserve a medal of honor for keeping two boys entertained for 2 hours in a dental office by myself. I pulled out all the tricks without using technology! :) I was completely exhausted afterward, but I felt accomplished. Sadly, BOTH boys have cavities. They are tiny, but obviously need to be taken care of. Consistent flossing has commenced in our home.

If you have time, please continue to pray for Elijah! Pray that he can get back to a point where he isn't feeling so depleted and out of control. Pray that he can finish second grade on a good note! I know we can get him there. I can picture it. I can't wait for him to not just scrape by in school, but to flourish! Thank you so much for checking in!

Wednesday, January 7, 2015

Rock bottom

Today was rough, to put it so very kindly. It was one of the most difficult days I have ever experienced with our oldest boy. School was canceled due to the cold temps, but I don't know that we would have sent him anyhow. I want to erase every moment of the day from my memory. A LOT of screaming, crying, thrashing, hitting and kicking occurred. I was a contributor to the screaming and crying portions. It was an ugly ugly day.

Elijah's brain is WAY overloaded. After a semester of school, Christmas-related commotion, croup x2 and a cough that disturbed many nights of sleep...his NLD brain is SPENT. He is in a really bad place and basically has zero control over anything he says or does. I am kind of in the same spot and it is hard to be nice or control my emotions right now, so I understand.

We cannot expect Elijah to go on like this. None of us can go on like this. Dan and I have decided to keep him out of school until he is 100% caught up, even if it takes four weeks. We are hoping to get a doctor to back us and possibly do homebound schooling in the meantime. If that isn't possible...gulp...we are going to take him out of school entirely. This would CRUSH Elijah and I really hope it doesn't have to come to that.

I am so sad that the world is so overwhelming for him. I cannot imagine how he must feel right now. I feel so terribly for him, but at the same time it is really draining to endure what he has to offer when he's on overload. PLEASE pray for him! Pray for all of us. We are at the bottom of a very deep pit and we're all feeling helpless.

Tuesday, January 6, 2015

Where's the tape?

Against my better judgment, we decided to send Elijah to school today. It was not in his best interest. He is still so far above boiling point. I have felt totally defeated and sad all day because I know that unless we pull him out of school for an extended period to catch up, this is going to be his norm for the remainder of second grade. He had some issues while at school and after school he was just a complete mess. His eyes were burning and itchy, the name-calling and blurt-outs were in full force and he was having a difficult time being nice to any of us. Honestly, I'm tired of worrying and thinking about it. I just want my boy to feel good.

I have more Sammy funnies!

Sammy and I spent a day alone together and it was WONDERFUL! We basically played and snuggled ALL day. This boy loves snuggling and he loves his mama. I love him so much back. He was curled up in my arms for a long time before lunch and when I suggested that we go eat, he said, "Ok, but...let's get back to snuggling after the break." :)

Sam has been obsessed with tape and cutting up pieces of paper lately. He uses his little safety scissors to cut dozens and dozens of paper squares all over our house. When I talk about throwing them away, he says, "NOOOOOOOO! They are our paper sandwiches!" He also likes to OVER-tape everything. The other day he taped our Christmas decoration box completely shut. It was an ordeal getting it all off! Then he taped Elijah's beloved Trouble game box that he got for Christmas closed and Elijah could not get it off. I often find pieces of paper such as the following hanging on various walls in our home..

He can often be heard saying, "WHERE'S THE TAPE?" He also likes to make tape art on paper or roll paper up and tape it together. The taping and scissoring is out of control!

He likes to change words around just enough so that they are noticeable and silly. He'll say:
"Mommy, have you heard of a dessert called chocolate ike cread?"
"Have you heard of the word probalbee?"
"Do you know a guy named Mide?"

My sweet little guy has been telling me a lot lately that he doesn't want to grow up. He doesn't want anything to change because he loves things just how they are (when he's not trying to run away from home). The other day he said to me, "Mommy, I don't ever want anything bad to happen to anyone I love." As a four-year-old I think that is super thoughtful, although I don't want him worrying about such things yet! He told me that he never wants to get rid of ANY of his toys. "When I'm a daddy, I want to have ALL of my toys. Don't EVER get rid of them!"

By the way, Sammy has recently told me that he wants to have four boys someday. Elijah upped that and said he wanted to have SIX boys. Yikes!

Instead of saying, "I'm four!" when asked how old he is, Sam now answers with, "I'm two plus two!" Sometimes he'll answer with three plus one or one plus three.

After spending the last few days with my youngest sweetie, I have so many of his funnies to share! I know there are more I can't remember right now. More later!

Thanks for checking in and please, if it is on your heart, PLEASE pray for Elijah and for his brain to settle down and for us to make decisions in the next few weeks that are in his best interest. Thank you!

Sunday, January 4, 2015

The funniest little Sammy

The sleeplessness and verbal/physical lashings continued today. I'm debating about whether or not to keep Elijah home from school for a few days and will certainly lose (more) sleep over that decision tonight. In the meantime, I jotted down a few more Sammy-isms to share. This boy is a riot!

He often approaches the rest of us and says in a super-cute and soft little voice: "I'm really sorry for the bad news I have to tell you.." This is usually followed by something like, "I just spilled water on the floor," or "I accidentally stepped on your Lego guy."

This boy loves junk food. He despises meals or anything at all that is good for his body and refuses to eat most foods. But when it comes to chips or candy, his tummy can stretch forever. I am constantly telling him that he cannot eat snacks because I want him to save room for whatever meal is next. He whines and complains about this endlessly. I tell him, "Sammy, if I let you eat candy and chips whenever you wanted, that would make me a bad mommy!" His reply: "Then I want you to be a bad mommy!" :)

Today he told me, "Either I get tons of technology or tons of snacks. Nothing else. Which one is it?" Nice try, kid.

He was being super sassy the other day when I told him he could not watch tv. He did his usual whining performance, so I left the room. I heard him say, "I never want you to talk to me ever again!" Then he opened our front door and said, "I'm going to let ALL of the cold heat inside!" :) Two minutes later, he was by my side saying, "Look at my Lego guy, Mom!" I said, "Oh, whoops, I'm not supposed to talk to you ever again, remember?" He sat on the couch for ten minutes whimpering and sucking his thumb. When I went to give him a hug, he said, "You're the NICEST mommy ever." Uh huh. I didn't realize he had actually left the front door open, so when we went downstairs twenty minutes later our downstairs felt like a freezer.

As I was cleaning up in the kitchen today, Sammy kept running in and hugging me. "Mommy! You're my finish line!" he told me. Awwww. He better not ever use that line on girls. :)

As of tomorrow, our Christmas break is officially over. :( We took down the tree and decorations today and Sammy was particularly sad about that. He had a pouty lip and every once in a while came over to me and gave me a whimpery hug. We talked a lot about how there are so many other things to look forward to during other parts of the year. It is sad to say goodbye to the Christmas season. Back to the grind tomorrow!

Elijah reeeeaaalllllly wants to go to school tomorrow, so I am praying for the most restful, restorative night EVER. Thanks for checking in. Have a wonderful week!

Saturday, January 3, 2015


That roller coaster ride I mentioned? It has become herkier and jerkier. I hadn't been putting the FitBit on Elijah since Christmas break began because it was soooo depressing looking at the "results" every morning. The word "HORRIBLE" may as well pop up every time I pull up his sleep log. I had him wear the FitBit last night for the first time in a while and just about choked when I saw the results this morning. He is not sleeping. We had a very rough day yesterday with behavior and this morning started off with a bang, as well. It is impossible to get E to nap during the day without a HUGE battle, so out of desperation this morning Dan and I piled all of us into the car and drove around on the interstates. That is the only way to get him to sleep! He's always been a good car sleeper. Maybe we should hire someone to drive him around all night long??

Do you like his attire? The ear muffs and monkey mittens have been staples lately, and today he added the lei. :)

This morning at 4:00 I laid in bed wide awake, as I do just about every morning. I thought about how unique the "sleep" schedule is here in our house. This is what happens (give or take 30 minutes) EVERY SINGLE MORNING in our house...

Elijah calls for me at 2:30. I go in and rub his back and he tells me he is scared. I do my best to remain totally calm and soothe him completely because anything else results in anxiety on his end. From that moment on, none of us (except Sam) sleep solidly. Dan and I get a solid stretch of sleep from about 10:00-2:30 every night. That is pretty much guaranteed, but after that we are in light-sleep/non-sleep mode.

Usually at 4:00 we start hearing him again. "Maaahhhhhh-meeeeeeeee!" over and over until one of us goes in. One of us takes another trip in to tell him he has TWO hours left to sleep.

At 5:00 he starts asking for a stuffed animal. We don't give him stuffed animals before this point...ever...because it would become a major distraction. I know he will not fall back asleep after 5:00 and I also want him to be quiet so he doesn't wake Sammy up, so I usually give him one at this point. It keeps him occupied in the dark until 6:00, which is when we get him out of bed.

One of us brings him into the loft at 6:00 and we get him settled with books on the couch. We turn on a dim light and he reads for an hour while we go back to bed to try to get our last bits of rest before getting up for the day.

We are all exhausted...all the time. Thankfully Sammy sleeps through most of this, but every few nights he hears Elijah and he is awake at 6:00, too. For the past two weeks Dan and I have worked minimally, so we've been able to take plenty of naps. Even after all of the naps, we are still so tired.

Please pray for Elijah! Pray for his brain to settle down enough so that he can sleep peacefully and be restored. Also please pray for our sanity! It's been a tough past few days and I keep praying for a turnaround day. Maybe tomorrow?! Thank you for praying and for checking in!

Thursday, January 1, 2015

Hang onto your hats (and happy 2015!)

Happy New Year! The boys and I rehashed 2014 today and talked about all of its highlights and lowlights. I'll use Elijah's favorite word and say that it was an "interesting" year. We had SO MANY good moments and some learning/challenging ones, as well. I'm excited to see what is in store for us in 2015!

Yesterday was Sammy's worst sickness day. His breathing was so scary. He sounded like Darth Vader while at rest and had a fever (although I don't know how high it was because the boys have managed to hide our thermometer in an undisclosed location). I was super nervous about getting him through the night last night, especially since Dan was working through the night. I eventually brought Darth Vader into bed with me so I could listen to (umm, obsess about) him whenever I wanted. By the time morning came he sounded much better and was so much better today. Thank goodness! He's on the mend.

Elijah, my sweet Elijah. He struggled today. It was one of those days when I envisioned myself on that terrible, old, shaky roller coaster at ValleyFair. The one where you feel like your brain is going to start oozing out of your ears and like the violent shaking may have done permanent damage to all of your internal organs. You hold on for dear life and will yourself to survive. "It's going to end. It WILL end. Get through the ride. HOLD ON TIGHT." That was today. I just got through it. As I've mentioned, it has not exactly been a restful "break," so Elijah is still well above boiling point. Today was filled with verbal lashings pretty much constantly. I have been praying all day that tomorrow will be better. And the next day even better. We have tried so hard to limit activity/noise/stimulation so that his brain can get back to a comfortable place. We're not there, but with some prayer maybe we can get there in the next few days.

I'll end with a few adorable Sammy funnies. :)

Lately he's been asking us random questions in the middle of the night. SMACK in the middle of the night, we hear questions such as the following:
"What is 4+2?"
"Is this breathing?" (which is followed by a HUGE deep breath)
"How old will Elijah be when I'm 7?"
"What color is blue plus orange plus purple?"

Since his sickness, he's said a few cute things:
"I think my smelling is stuck!"
"Why is my talking not working so well?"
"I think my cough is running out."

He told me that he didn't ever want to grow up (probably because I always tell him to stop growing up). Then:
Sammy: "What makes me grow up?"
Me: "Time!"
...long pause and lots of thinking...
S: "Well....then I should stop time. I think I'll put some tape on it. Or super glue."

I hope you all had a good day and that this year will be filled with good things for ALL of you! Thanks for peeking in!