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!