Cavities be gone

Sammy and I had a "date" this morning. We went to the dentist! Super fun! He was very afraid and I worried he would do what I did when I was his age...refuse to open his mouth. Yes, I did this and I ended up in the hospital to have a tiny cavity filled. Thankfully Sammy was not quite as extreme as his mama. He was the bravest little boy. He cooperated 100% and pushed through some big fears. I was so proud of him! He was proud, too. The cavity is gone and will NOT come back as long as he is under my roof! :)

Elijah and Dan also had a dentist date this afternoon to remove a cavity and that didn't go quite as smoothly. He has legitimate fears about "the mask," which is just laughing gas but to him it is the same mask he sees right before surgery. Dan said he was anxious throughout the entire visit, so they turned up the gas to help calm him down. The extra gas made him tired and grumpy, understandably. He just about fell asleep during story time, which never happens...not even on the really tired days.

Elijah showed signs of sickness today, which has me on croup alert. We gave him a tiny dose of preventative steroids, rubbed some oils on his feet and he was OUT. Speaking of oils, we are still experimenting. His sleep patterns are different, but he still doesn't ever seem entirely rested. He has been sleeping until after 5:00 every morning (wow!), but he still has nights when he is awake for long stretches in the middle of the night. The 5:00 wake-up times are pretty nice, though! I am still learning about essential oils and what each one does. I am skeptical, but I remain hopeful that we can find a good recipe that actually helps him. Stranger things have happened!

I took E to see a new sleep doctor a few weeks ago. This doctor is INCREDIBLE. I put Dr. R in the same group as the rest of the excellent doctors we have. We talked for an entire hour and at the end of the visit he gave one of the most perfect descriptions of Elijah that I've ever heard. I appreciate top-notch doctors immensely! His conclusion: We are doing everything POSSIBLE to get Elijah rest. There really is nothing more we can do as his parents aside from getting his anxiety under control. He suggested trying an anxiety med, just like Dr. M has been suggesting for the past year. I have not been in favor of the idea only because of E's super sensitivity to ANY medication. At this point, though, I am willing to give it a try. We have an appointment with Dr. M next week, so we'll address anxiety with him. Our sweet boy is constantly anxious, even when he is lying in his comfy bed with his heavy blanket draped over him in his dark bedroom that smells so good. We just have to relieve some of that  anxiety for him. As Dr. R said, every little thing we do for him helps by tiny increments. We need something that is going to help him in a big way so that he can function and sleep! Please pray with us about this. Medication is a big step and I feel uneasy (yet hopeful) about it.

Homebound instruction has gone pretty well. Elijah generally has done so much better with his tutors (who were AMAZING) than he does with me. He had a few rough sessions, but most of them were productive overall. He will return to school on Monday. He is super excited about going back. We are praying so hard that there will be a positive change in behavior and overall experience at school!

As I said in my last post, I have begun trying to embrace everything we face, no matter what, instead of fighting. Difficulties have shaped me into a better person and that is more clear than ever right now. I can feel all of us being molded into better humans every day.

I'll end with a letter one of Elijah's classmates wrote to him this week. Could anything possibly be any sweeter? :)

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!

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..

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!

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!

Preparing to return to school

Elijah is a few hours into wearing his ambulatory EEG monitor. He looks like a cute pirate, with his bandana and missing teeth. :) We will bring him back to the clinic tomorrow so Dr. J can review the results. We're praying hard for no seizure activity. I don't think we'll actually get the results for a few days.

The past few days have been filled with visits from various people from Elijah's school as they do testing for his upcoming special ed re-eval. The DHH (deaf and hard of hearing) teacher performed a few fun tests where E had to listen to directions about how to color a character on a piece of paper. An audiologist stopped by today and performed different hearing tests that I found interesting. When she put "noise" between her and Elijah and spoke words to him, he could not decipher what she was saying. I think he repeated maybe 2 of the 30 things she said back to her. He also became very fidgety and did a few verbal outbursts during the "noise" portion. It was very obviously bothersome to him.

I chatted on the phone with his school PT today and she plans to help him on and off the bus for a few weeks (so thankful for this). Have I mentioned that he will be going back to school on Monday? Yikes! We'll start with half days for a few weeks and go from there.

The school audiologist will visit his classroom sometime next week to make sure his desk is situated in the best possible place considering his situation. Elijah's special ed case manager, who has been doing his homebound schooling at our home, spoke with me at length tonight about Elijah's transition back to school. She is doing everything she can to make the transition as smooth as possible for him. She plans to talk to his classmates tomorrow about his return to school, which I think is so super thoughtful and helpful. She will tell them why he has been absent and also explain about his hearing difficulties (if they want to get his attention, they should maybe tap a shoulder or make eye contact first).

Yesterday we got a cherished visit from Elijah's kindergarten teacher (and her super adorable blue-eyed baby!), Mrs. B. Oh how we love her! She and Elijah have such a unique connection and it was so much fun to see them interact. It reinforced to me the importance of him having a teacher who gets him and who can be silly with him and who has compassion for his history and also loves him for who he is. I tried to talk her into maybe teaching second grade next year. :) I think she's going to stick with kindergarten, dangit.

Once things settle down, I will write a SAM-ONLY post! Sammy, our sweet boy, is ridiculously cute and adorable. He melts our hearts and we all love him so much. Thanks for reading!

Pillow Pets for "the kids" and our first day of homebound schooling!

Wow! Dan and I were FLOORED when we saw all of the Pillow Pets we had received in the mail today. Not only did all of these packages arrive at our door, we also received donations with very heartfelt notes included. One in particular moved me to sobbing tears. It was from a long-time friend who confessed that Elijah's recent ordeal in the hospital moved him to pray for the first time in ten years. Not that I would ever wish for either one of my boys to ever endure hospital time and sickness, but if it could bring even one person to know Jesus..

Back to the Pillow Pets! If you haven't yet and would like to contribute to our "cause" that is growing with each passing day, please help in any way that you can! When we are finished collecting (not sure when we'll be done, but at least a few more weeks), we will deliver the Pillow Pets to Mpls Children's Hospital to be distributed to the kids there. It has been so much fun to see Elijah get excited about it (Sammy isn't totally wrapping his head around the concept of giving quite yet). With every one that arrives, Elijah asks me for a new count. "NOW how many Pillow Pets do we have for the kids?" I love that he refers to them as "the kids." In standard Elijah fashion, he asks me what their names are and how old they are. :)

Elijah had his first day of homebound schooling today. It went GREAT! Elijah's homebound teacher (his sp ed case mgr at school) is awesome and we love her. She had the idea of having Elijah's classmates write him get well cards, so he received and read through those today. He was SO HAPPY about each one and read through every word. One card had "I love you" written on it. Elijah dropped it to the ground and said, "Ugh. That just doesn't make sense." :) He was particularly excited to read two of the cards, both from girls that I have never heard him mention. One had a heart-shaped hot air balloon colored on the front. They were all adorable. Ms. W told us that his classmates have been asking a lot about Elijah and that they miss him. I think it makes him feel good to hear that.

The lesson part of the visit went great! He did his math and reading and spelling with ease and with total cooperation. She was impressed that he grasped all of the concepts so quickly with as much school as he's missed. It was nice to be able to have her here and chat with her about specific concerns we have about him going back to school. She understands and I think she'll stand behind our boy.

Tomorrow is our first appointment at the attention-learning-memory center. I feel SO hopeful about it. I just confirmed today that all of the visits involved are 100% covered by insurance, which is a huge blessing. We are thankful for Medical Assistance!

I'll end with a few cute Sammy-isms!

Sammy turned around and punched me square in the face.
Me: WHAT in the world was THAT?! NOT OK!
S: But I didn't do it! My puncher did!

Newly-invented word of the day:
Sammy: "Elijah, leave my toy ALONE! ..... MOM! Elijah is traumaticking me!"

And tonight as we were finishing dinner, Sammy leaned over and put his head in my lap. He sighed deeply and said, "Ugh! Mom, I do NOT love bad guys."