Knees in the breeze

The boys and I spent two nights at the dropzone with our daddy/hubby this weekend and it was sooooo good for all of us. The boys loved their time there, as always. Elijah slept GREAT, which was wonderful (Sammy, too, of course). The boys were able to play with friends and run around the perimeter of the hangar approximately 8,000 times. We spent quality time with our amazing friends and that was a big highlight. We adore our skydiving family to pieces!

On Sunday night, after the boys were asleep and the tandems were finished for the day, Dan asked me for the 1,000th time if I would do a tandem jump with him. I have said "NO!" 999 times before. I have made hundreds of jumps on my own, so it has been really hard to imagine giving up that control and freedom. I had a weak moment, or maybe you could call it a moment of strength. I knew I needed to get in the sky and I didn't have time for a re-train. To make things better, the sunset was gorgeous! I think you can tell from the pics that I made the right decision. :)

Now I'm motivated to get my gear in working order and to get in the sky much more often! Dan is home for the next couple days, so we will have some family time together. An incredible friend of ours has offered to come over and watch the boys tomorrow or Wednesday so Dan and I can get away for some alone time. We have more dropzone time coming up this weekend (maybe three nights this time?) and I feel so happy about having the month of July "off." Elijah's ear is healing well and he has been in MUCH better spirits than in previous weeks. Life is good! Thanks for peeking in!

Snuggleday

Elijah had another awesome day! His gauze fell off during the night last night (we were instructed to let it happen on its own) and his incision looks great. He experienced minimal pain today and was in great spirits. He looks better and way less tired to me than he has in months. I'm so happy the "sleep" meds are out of his body.

Dan is in full-on skydiving mode, which means the boys and I are spending a lot of time together and will continue to do so for the next 6 to 8 weeks. The past two days have been strange. I didn't feel like today was Friday...or Saturday, Sunday, Monday, Tuesday, Wednesday or Thursday, for that matter. I literally did not leave the boys' sides even for a second today. We did HOURS of snuggling and even more hours of playing. I refuse to forget about the blessings! I'm feeling super grateful and overwhelmed and I am doing the usual post-surgery sorting-through of feelings, events and answered prayers.

If all continues to go well, the boys and I will head to the dropzone tomorrow. We are all looking forward to it. Have a great weekend! Thanks for stopping by.

Thankful.

Today was a pretty incredible day, and I found myself constantly feeling thankful. We did not know what to expect coming into this surgery. We would rather forget about the last ear surgery, and we didn't know if all or any of that chaos would happen again. We are SO THANKFUL that this was a completely different experience.

(My dad and stepmom have gotten a couple Piggie-Elephant books for the boys and they LOVE them! Elijah insisted on bringing both books with him to the hospital yesterday. He literally snuggled with them before and after surgery....arms wrapped around them while he drifted in and out of sleep. :) Today he wanted to pose for a picture with one of them.)

Elijah had a great day! He woke up feeling good, eating and drinking A LOT and keeping it all down. He played almost at his usual pace, and in true fashion was sassy when interacting with his brother. He complained of mild pain twice, but we began a tylenol-advil schedule that seems to have taken care of any discomfort. We changed his gauze once today and his ear/incision look great! No fever, no dizziness, lots of crazy hair and a big happy smile on our spunky and resilient oldest boy!

I could tell Sammy was happy to be with his family today (the feelings were very mutual). I got lots of hugs and snuggles. After I had put him down for a nap, he called me into his room. "Mommy! You forgot to give me LOVE!" He wrapped himself around my arm and would not let go. "I love you SO MUCH, Mommy. You are the best mommy EVER. I love all of our family." I love that little boy! He is so funny and cute and independent and awesome.

I feel like it would be so easy to forget about the blessings (MIRACLES) that have been thrown our way. Once things are "okay," it is easy to settle back into a routine and forget about answered prayers. Today, I haven't allowed myself to forget. I keep reminding myself to be extra thankful. I keep thinking about where we were at on Day #2 last time and how Elijah couldn't walk in a straight line for many weeks after that surgery. I keep reminding myself about what the doctor told us yesterday. He said that if another surgeon were to do this surgery not knowing E's history, he/she would probably have no idea that his footplate was at one point totally broken in half. Yesterday it appeared to be totally healthy and filled with fluid, which is a miracle based on the reactions we've seen from the doctors and nurses (apparently cracked footplates don't "just heal"). I keep thinking about how many times Elijah has had to endure tape being painfully peeled off his arm and needles poked into him and on and on. And yet he continues to smile. When I think about all of this, his anxieties and struggles make so much sense. I want to never forget any of this and to keep it all in perspective! Please remind me of this when I am struggling to understand something or another! :)

Yesterday Elijah asked questions and made comments that we have never heard before. Here are the ones I can recall:
"Am I going to die?"
"I'm scared."
"I don't want to be alone."
"Will you and Daddy be with me the whole time?"
"After I go to sleep with the mask, will they put the tube in my throat?"
"Will you and Daddy wait in a different room while I have surgery?"
"I miss Sammy! I want to be with him!"
"Why does my throat feel funny after surgery?"
"Will you be there when I wake up?"
"When Daddy comes into the surgery room with me, is he a nurse?"

For the first time ever, he was thinking ahead and also expressing feelings surrounding surgery and time in the hospital. He has not ever done this before, not even a little bit. I never want my boys to worry, but this is definitely a sign that Elijah is maturing! I wonder if he has just been unable to make sense of these things in the past and is finally able to express the words/feelings verbally. It makes me a little sad to think that he has perhaps been holding all of these questions/thoughts in because he has been trying to make sense of them. At any rate, I was happy to hear him rattling off questions and I am MORE than happy to provide answers!

If my surgery equation is correct (one week of healing is needed for every day spent in the hospital), we should have another 6 days before we are back on track! We do not have much planned in the next few weeks and I did that on purpose. Hopefully there will be lots of time relaxing at the dropzone and time spent together and with friends and family. After a few months of TONS of activity, I'm looking forward to a laid back July!

Thanks for checking in! Wishing you all a wonderful week!

Home with a vomiting asterisk

We are home! Elijah has thrown up a handful of times since leaving the hospital, so we are on dehydration alert. Dan and I both feel like it is anesthesia vomit as opposed to inner ear vomit (this is a good thing). We are hoping his tummy will settle overnight and that he will feel much better in the morning. It took him a while to wake up after surgery. He was soooo groggy and sleepy.

Around 4:30 we woke him up to give him juice, just so we could see if his tummy could handle it. He had nausea for most of the rest of the time we were at the hospital, but he didn't throw up until we left.

As always, the worst part of the ordeal was taking the tape off of his IV. Oh my goodness, this is so highly traumatic! I am personally going to invent something that can allow doctors and nurses to bypass having to place tape directly on skin. There just has to be a way! Without this, I think he would have had very minimal anxiety. One of my two favorite lines from the day occurred while the nurse and I worked on the IV tape. Elijah said, "This is NOT ok, Nursey!" :) My second favorite line was said on the way home. I sat in the back seat next to him because he wanted me to hold his head while also holding his puke bag up to his mouth. Then his left eye started to itch, so he wanted me to hold his soft blankie up to his eye. He saw that I couldn't do all three things, so he said, "Can you PLEASE have three hands, Mom?!"

We wheeled Elijah to the car as he held a bag to his face, just in case. He actually moved the bag aside and smiled when I took out Dan's phone to take a picture. That's our boy! 

We will watch him closely through the night. Hopefully his tummy settles and he will feel a ton better in the morning. He hasn't felt any pain yet, so we are hoping we keep that under control, as well.

We're also praying that the prosthetic device Dr. L placed in his ear will restore some/most of his hearing! We won't know this for a few weeks, but we will pray hard in the meantime. That's all for tonight. Please forgive me for any typos or things that may not make sense. We are tired! Also, grateful (for so many things) and ready for a new day tomorrow. Thank you for PRAYING and for checking in on us!!

Surgery done!

Whew! Less than three hours later and Elijah is out of surgery! We just talked to Dr. L and for the first time ever, he told us, "Everything went great!" We've sort of gotten used to seeing the long face, followed by hard news. E's footplate appeared healthy and normal, which is a total miracle considering the state it was in a year ago. He was able to place a total ossicular replacement prosthesis and he hopes this will restore some/most of Elijah's hearing. There is a possibility that it won't, in which case they can try again to connect things (if they need to do this, they could do it through the ear canal which is good news since they've had to cut an incision behind the ear and go in that way the past 3 times). But hopefully we won't have to worry about that and hearing will be restored on some level.

He is in recovery right now and they are waiting for him to wake up. When he does, we'll get to go see him. Since Dr. L didn't need to mess with the inner ear at all, we are hoping for no nausea/dizziness this time. It's possible we could get home yet tonight, but we'll play it by ear. Ha!

Great news from the OR!

First update from OR: NO cholesteatoma regrowth. YAY!! This is wonderful news. Elijah is doing great and they are going forward with prosthesis placement. Please pray for success with this and a smooth rest of his surgery. THANK YOU! Prayers really cherished right now.

In the OR

Here's a loopy Elijah snuggling with Murray the therapy dog before surgery. He got to meet this sweet puppy the last time we were here, so it was a special treat to get love from him again.

Elijah was sad to be here this morning. He kept saying that he wanted to see Sammy. :( He stayed busy with playing and reading books until the Versed kicked in and he couldn't hold his head up anymore. Dan went back to the OR with him around 11:35 to make sure he was as comfortable as possible. We are hanging out in a private waiting room now. Surgery is expected to take 4 hours. We are waiting for our first update.

Please pray for a successful surgery, NO cholesteatoma regrowth, no nausea/dizziness/vomiting and for restoration of hearing! THANK YOU!

The perfect un-perfect storm

I'll start with a Sammy funny from yesterday!

Sammy (as he stuffs a gummy worm into his mouth): Sometimes I like candy and sometimes I don't like candy.
Me: Really?! When do you not like candy?
S: On Tuesdays. 
Me: Well today is Tuesday.
S: Oh. Except today. Just on other Tuesdays.

Elijah could use prayer right now. There are a handful of factors at play (lots of summer activity and being overwhelmed by lack of schedule, sleep issues, anxiety, weaning off meds), all feeding off one another and creating quite the "perfect" storm in his mind/body. Things feel very overwhelming and complicated at the moment. Here's a small but complicated piece of our daily routine, as an example: Potty issues have regressed in a huge way recently. Elijah uses the toilet independently 0% of the time. If we don't tell him to go to the bathroom, he holds everything in until an accident occurs. Lately he has been super anxious and his tics have been worse than ever, so his body is constantly tense which doesn't help potty issues. I have been putting him to bed extra EXTRA early because here is what happens at night.. Ten to fifteen minutes after he is in bed and his body finally relaxes a bit, he poops. But he doesn't tell me, so I have to check on him every few minutes because he will not fall asleep until he is cleaned up. Once I clean him up, he will fall asleep. This is at least a 30-minute ordeal. And it has been happening every single night.

We almost have him completely weaned off the "sleep" meds. We actually have an appointment with the sleep doctor tomorrow. Please pray for miraculous insight/help!

My gut tells me that we need to get sleep and anxiety under control first. We have a pretty good handle on what he needs on the NLD front. We need to get him to a more rested/peaceful place and go from there with NLD strategies.

Someone asked about E's upcoming surgery and what that will entail. The surgeon will check for cholesteatoma regrowth and remove it, if necessary. He will also place a prosthesis inside his ear with the hope of restoring hearing. I'm not sure how exactly the "wiring" will go, and the doctor didn't seem entirely sure, either. It'll be a play-it-by-ear kind of situation. Ha!

Super exciting things are coming up in the next few weeks (surgery excluded)! Will share soon!

Mind-blowing

Elijah is struggling. We are still weaning him off his "sleep" meds and things are pretty tough right now overall. Not nearly as tough as they were a few weeks ago while we were in Kentucky, but still not cool. He wakes up in the mornings looking exhausted, he has long stretches of time when he appears to want to make everyone around him completely unhappy and potty struggles have regressed in a huge way. It's hard to see him like this, but we are thankful that this isn't happening while school is in session.

I brought Elijah to see his ENT doctor today for a pre-op check-up. He got another hearing test and his left ear showed slightly diminished hearing, but it was only conductive (middle and outer ear only, which is fine in his situation). The gal who administered the test told me it was "mind-blowing" that Elijah's inner ear was working at all, considering the damage done to it. I've never heard a medical professional use the word "mind-blowing" before today. Prayer is the answer! We'll get these doctors believing in the power of prayer after all.

I chatted with Dr. L about E's surgery which is set for July 8th. He will check for cholesteatoma regrowth. No regrowth is ideal, but if there is minimal regrowth he'll remove it and attempt to place a prosthesis. There is a 10-20% chance of regrowth, and if there is any we pray that it will be minimal. The likelihood of restoring some of his hearing is GOOD (a miracle, considering the fact that his footplate is totally broken in half). The length of the surgery will be 4+ hours. I asked about the chances of having a difficult recovery like last time and he said, "We won't know until we're there!"

I've managed to push anxiety about this surgery aside for the most part. I'm thinking the behavioral issues we've been dealing with have been a good distraction?! The other night after shooting a wedding and getting home very late and being very tired and vulnerable, I felt some anxiety start to creep in. I had the thought, "How in the world am I going to get through this surgery?!" I envisioned myself in that waiting room, again, worried and wondering what was in store. As is always the case, it seems, I heard just the things I needed to hear in church the next morning. I refuse to let fear/anxiety become my lowercase-god. There is another God who is bigger and that is who I will focus on!

Today I was an organizing fool! The boys' activity corner is completely RE-organized, including a list of activities for the boys to choose from when they are bored. I also started on the toys in the garage (my hugest task of all). It feels great! I have much more to accomplish. Dan has tomorrow off work, so we are hoping to spend some quality time together as a family. Maybe the pool? Followed by a little more....organizing?! :)

Have a great week! I hope you all are enjoying this nice warm weather!

A miracle before our eyes!

We still know nothing specific about the EEG results, aside from the fact that they were "abnormal." We have an appointment on Wednesday morning at 8:00 to discuss the results with Elijah's neurologist. It's anxiety-inducing to think about it, if I'm being honest. I know it'll be an answer for us and it's another step toward figuring out the Elijah Puzzle, but I am a mama and I do worry.

Now for amazing, miraculous news that will blow you away. If you don't believe in God and the power of prayer, you might reconsider after reading this. You might remember me writing about what Dr. L said to us after E's recent ear surgery. He told us that there was very very little hope that Elijah would ever be able to hear again out of his left ear. He said that the only reason he was telling us there was a chance was because he didn't like to say the word "never."

You know the rest of the story. We have been moving forward with the assumption that Elijah's left ear is deaf and will be forever. In the past week or so, though, Elijah has been insisting that he can hear a little bit out of his left ear. Dan and I have tested him a few times by plugging his right ear and whispering very softly into his left ear. He was actually repeating words back to us! But I still thought that maybe his right ear was just super-human.

Fast forward to today. Dan brought E to see Dr. L for surgery follow-up. They gave him a hearing test to check for the small chance that there might be residual conductive hearing. Guess what. HE HAS CONDUCTIVE HEARING. It's minimal, just like it was before surgery, but it exists! The doctor said, "There is really no way to explain this." Dan said, "Yes there is! Prayer!" There have been so many people praying for Elijah about this specific thing in the past month. SO MANY PEOPLE. Dan has been telling me since January 7th, as I sat crying in the waiting room at Children's Hospital after being told that Elijah would be deaf is his left ear for his entire life, "A miracle is going to happen. He is NOT going to be deaf. I just know it." Sure enough, my faithful husband has been right all along.

Elijah's footplate on his left side was literally broken in half and totally damaged. It had been that way for some time, based on the fact that there was no fluid in or around it. The fact that even a few cells survived is a miracle. THANK YOU all for praying. Thanks to your prayers, a miracle has happened right before our eyes and our oldest boy will be able to hear again.

At some point this coming summer, we'll do another surgery to check for cholesteatoma regrowth and also to see how much hearing can be restored in that ear. Until then, we will manage with what we have! Elijah has been cleared to return to school for half days for one month, and hopefully he'll be ready for full days after that. I'm waiting to hear back from a few people from his school, but I'm assuming we can get him back soon! (Pray for good-behavior angels to surround him, please.)

One last thing that made us giggle. Dan was explaining to Dr. L about the abnormal EEG and how we are trying to put all of these puzzle pieces together to figure out what is going on. Dr. L said, "Elijah's just an evil genius, controlling everybody's minds." There you go, puzzle solved. :)

And THERE YOU GO....you can now say you know someone who God performed a miracle upon.

The 100-piece puzzle

Is it Tuesday already? The days all sort of blend together for us lately. Elijah continues to improve every day. He is much more alert and he is slowly regaining his balance. We are still worried about his safety when he is away from us, so he will be doing homebound schooling for a few weeks until his balance is back to normal. Starting tomorrow, his special education case manager will come to our home to work with him for one hour/day. We are very thankful that she will be the one coming to teach him, as she has been such a positive part of his school year.

We are in the weaning process with the Valium (this has been helping with dizziness and vomiting since surgery). We are currently giving him 1mg 1x/day. This is WAY down from the 4mg 3x/day he was receiving in the hospital. Super progress!

We have a big appointment coming up for E on Thursday at an attention-learning-memory center. He will receive extensive testing over four separate appointments to test for ADHD, sleep disorders and various other things. We feel like we will walk away with valuable information, as there are so many "labels" he kind-of-but-not-really fits into. In preparation for this appointment (and also for his upcoming special education re-eval), I have been observing him very closely and writing down all of my observations. It's amazing what is revealed when I force myself to OPEN MY EYES.

There are "things" Elijah has done for years. Some since he was a baby and that I've written off as quirks. In the past week I have really paid attention to these things (as they seem to have gotten worse since surgery) and had a major lightbulb moment in church on Sunday. I will wait until it is confirmed by a professional before I share, but I feel very confident that there is something we will be adding to his "list" soon.

I also want to look into OCD (I know he has this on some level), ADHD and anxiety. It is overwhelming right now to consider all that his little mind is dealing with! Not to mention sudden one-sided deafness. We have had to start thinking about how to make his life easier since his surgery. We have begun sitting him on the left side of the car and table. I try to make eye contact before talking to him and if I speak to him from another room I tell him where I'm located. This will be a process for us.

In all of my observing/thinking lately I realized that Elijah is NOT good at telling us what his body and mind are feeling. I've started working with him on this. We do periodic "body checks" where he tells me what his current feelings are (sad? upset? happy? anxious?) and what his body needs at that particular time (thirsty? hungry? potty? pain?). He currently seems confused about his hearing loss. We told him before surgery that he'd likely be able to hear again afterward, so he keeps saying, "I can hear again! Right? Because I had surgery?" But then when we ask him if he can hear out of that ear he says, "No."

We have A LOT to get through this year, I feel it deep in my bones. But I know we'll get there. Dan and I will never give up. We will continue to fit this 100-piece puzzle together that is all blue sky and grass. It is sometimes frustrating and confusing, but we will get there, we have no doubt. We love our boy...BOYS...so much. We adore Sammy to PIECES! Oh my goodness, he is absolutely the cutest, sweetest thing (when he's not punching me in the face). Seriously, he punched me square in the face the other day and I said, "WHAT was THAT? NOT OK!" He said, "But I didn't do it! My puncher did!" :)

Thanks for reading! Please pray for ANSWERS, healing and progress. Thank you!

One-sided deafness

Elijah was much improved today, but still not totally back to himself. We have started exploring the "homebound" schooling option for him for a few weeks. Dr. L was in full support of having a teacher come into our home for a few hours/day to help him with school work while he is recovering. We worry mostly about his safety in school right now since he is still so unsteady on his feet. To be honest (and I'm so sad to admit this), after a very challenging first half of his school year I welcome delaying his return to school. It was draining and saddening to receive negative reports so often from his teacher. Eventually he will be well enough to return to school, and at that point we will need to address some issues.

Which brings me to... the day E had surgery. After anxiously sitting in the waiting room for 4 hours, I retreated to a chair next to the window. I looked out onto Chicago Avenue and cried huge tears. The wait had begun to wear on me and deep in my heart I knew we would be hearing some hard news soon. A few minutes later, I heard Dr. L's voice. He asked Dan and me to come into a conference room with him. He closed the door behind him.

My main concern was Elijah's well being, so I asked if he had done ok during surgery. Dr. L's answer: "He is fine, but I have sad news about his ear." He talked about the broken footplate and the deafness. I fought back tears and used the time with him to ask questions. I told him about Elijah's struggles in first grade and the behavioral issues his teacher had been dealing with. Without pause, Dr. L said, "I guarantee the deafness is a major factor in his struggles at school."

As he explained to us, which was later reconfirmed from a friend of mine who is deaf in one ear, classrooms and places with a lot of voices/noise are VERY difficult and frustrating for individuals who are deaf in one ear. All noise blends together and no one voice is heard over another. One of Elijah's coping mechanisms in school this fall has been to talk and hum/sing to himself and do a lot of "blurt-outs," which was something he got into trouble for almost daily. Now I understand that he was probably becoming frustrated and turning into his own head as a way to cope with frustration. I am hoping we can make a few positive changes in his classroom to help him not be so frustrated once he returns to school.

In the meantime, we are recuperating! Each day seems a little more normal and brings a little bit more progress and happiness. We are thankful for so many things in our lives right now, and that we are able to spend quality time together as a family. Thank you for checking in!

Continued healing and a new bed!

I'm so thankful that I have such snuggly boys! We cuddled after bath-time for a while tonight and it made my mama heart HAPPY.

We finally got Sammy a big boy bed! In standard Sammy fashion, he has not shown super excitement about it. He typically resists change and wants nothing "extra" done for him. He has done great in the new bed, though! The boys' room looks much cuter.

Elijah had a good day! We even got out of the house for a bit today. For the past (nearly) 48 hours we have given him two low doses of Valium, which is keeping the dizziness and nausea at bay. With time, we hope to eliminate the medication. He is still needing assistance with stairs and at times looks like he is 2 and just learning to walk. We are considering options for school right now, as he needs to return in some capacity. We will either explore a homebound program for a few weeks or send him back to his class for a few hours/day to start with. We are just so happy about the progress he is making!

Thanks for checking in. We are healing and improving every day!

Rollercoaster

A small amount of Valium did the trick today! Elijah slept for THREE solid hours this afternoon and woke up feeling great! I was able to sneak some serious snuggle time in there, which I loved. He experienced no nausea, vomiting or dizziness for the rest of the day. He was much more steady on his feet and was almost back to his usual spunky self (not totally, but almost). He had a huge dinner and was a bottomless pit, asking for more and more and more mac & cheese, please!

We aren't sure how often to administer the Valium. His body (vestibular system) obviously needs it on some level right now, but we also have to be careful not to over-medicate, creating an Elijah Zombie. I have an idea that I will attempt tonight and report back. Pray it works!

Thanks for the continued prayers!

Continued issues..

The saga of Elijah's ear continues! We had discontinued the Valium on Monday (doctor's orders) after seeing him get super loopy. This morning he was stumbling around the house and began vomiting again.  He hadn't done that since Saturday. His body obviously still needs the medication, so Dr. L told us to resume at a lower dose than before. He threw the dose up instantly. I remembered from the hospital that eyes closed equals happy tummy, so I put him in my bed, gave him another dose and asked him to close his eyes. He has been asleep for over an hour and the medicine stayed down, phew. When he wakes up we will try water and crackers. If we can't keep those down, guess where we will be heading back to?!

A day of healing

We stayed at home all day today. A few of us (ahem) didn't remove our pajamas. :) It was a major healing/recuperation day. I felt like I had maybe been hit by a bus or semi truck. I was achy and sore and I roamed about in a foggy state for most of the day. That is usually how it goes after such an experience. When we ditch the hospital, the healing begins.

The one medication Elijah was sent home on was Valium. While in the hospital, it helped his nausea/vomiting immensely. The doctor sent us home with a weaning schedule because apparently side effects can occur if it is discontinued abruptly. We skipped E's 10:00 dose last night because I felt in my gut like he shouldn't take it, so we gave him a dose right away this morning. He was super loopy today, stumbling all over the place and slurring his speech. Dan and I had him lay down for a nap around noon, which he fought. "I don't NEED a nap!!!!" Two seconds later he was in a deep sleep, and he slept for a SOLID two hours. His body obviously needed extra rest.

When he woke up from his nap he was totally out of it. I could hardly understand a word he was saying and he could not take a single step without me holding his hand. He laid down on the living room floor and asked for a pillow and blanket. Not normal. I called Dr. L and he told me to discontinue the Valium immediately. I asked about side effects/withdrawals and he said they would be minimal. I was so glad to hear him say that because I felt like the medication was the culprit of the weird behavior and I wanted it out of his body ASAP. He has always been sensitive to medication, so I know it has been doing a number on his mind and body.

Once evening came, he started to act much more like himself. He and Sammy began wrestling and playing and fighting. It was music to my ears...when I wasn't telling E to BE CAREFUL! He is still very unsteady on his feet, so if any of us even touches him he falls right over. It's almost like he is having to re-learn how to walk and completely re-set his balance. Going up or down stairs by himself is not an option for him at this point. Walking through the kitchen or going to the bathroom by himself are also not options. He needs a lot of assistance, which is to be completely expected! He started walking again just over 24 hours ago! A week ago tomorrow he couldn't open his eyes without vomiting. He has come a LONG way, and I know he will make great strides in the next days and weeks.

Elijah will be out of school for most, if not all, of this week. We plan to take it day by day. We want him to be safe and that is our main concern. We are keeping up with homework and he is doing great with that. His speech teacher had a few of his friends write and send him get-well cards, which was so incredibly thoughtful. He isn't even in speech anymore, so Mrs. F went above and beyond. He LOVED the package he received from her in the mail today. We are so thankful for those teachers/caregivers who go above and beyond for our boy!

Thanks for checking in. We are grateful for every set of eyes who reads these posts! Thank you for caring and praying. xo

The Sudden Amazing Recovery

WE ARE HOME! A few minutes after getting my sweet Sammy back today, Dan called from the hospital and said that the nurses were WOWed by Elijah's sudden amazing recovery. He kept insisting on walking around his hospital room, IV pole in tow, which is just crazy! He easily kept food and water down all day with ZERO bouts of nausea or vomiting. His blood pressure has been normal since 2:00 this morning. He felt no dizziness and was alert and in good spirits all day long.

Prayers were answered today in such a major way. When I think back to 24 hours ago?! Wow. There have been so many people praying for our boy in the past 24 hours and those prayers WERE HEARD AND ANSWERED. I will never forget this. Dan and I are changed. We both have a renewed perspective and more grace than ever. In between my ridiculous hospital-aftermath tears, we have talked about Elijah and the big-picture tonight. It's good stuff and I think we will both be better parents and people because of this experience.

When Elijah and Dan got off the elevator at the hospital (Sammy and I were eagerly awaiting their arrival downstairs), Sammy excitedly yelled, "We're all TOGETHER again!" It was the sweetest thing. The car ride home was nice. The boys were so very happy to be together again, doing their usual back-and-forth banter. Usually I would have shut some of it down (the potty talk parts), but tonight I loved it and let it go. Our boys love each other so deeply. At one point Elijah said, "We're BEST friends, Mom!" :)

Elijah was very wobbly on his feet tonight. He swayed all over the place and freaked me out a few times while trying to walk through the kitchen. He will need assistance for a few days. We aren't sure how to proceed with school yet. We'll take it one day at a time.

Thank you for reading and for praying! Your prayers made a difference!

I see home on the horizon!

My very kind sister-in-law, Christine, had Sammy over at her house today so I was able to come home and get some rest after last night. I feel so much better after a nap, but find that I'm fighting back tears CONSTANTLY. This past week, particularly last night, has given me a HUGE dose of perspective. I am so thankful for my little family and all that we have been blessed with!

Elijah is having a GREAT day, as you can see! Before I left the hospital this morning, I was able to get him to walk in the halls a bit. I had to bear most of his weight, but he did it without complaining and even without dizziness or nausea! Dan just sent me this pic of E playing in the bathroom (his "lair," apparently). I'm thinking home is on the horizon! Oh what a few days can do!

Thank you again (sorry, I'm a broken record) for the prayers and support and kind words. So so grateful.

Sedation

We think we found the cause of the low blood pressure and low heart rate. I had a feeling in my gut all afternoon and evening that something was amiss. Elijah was acting strange. The things he was saying and the way he was saying them were different than usual. His nurse took vitals about an hour after he had fallen asleep and I heard her say, "THAT can't be right." His BP was 70/46 and heart rate was in the 80s. 

Elijah's room was suddenly filled with nurses...some trying to calm ME down and some trying to figure out what was going on. They called Dr. L and he told them to get an ICU doc to the room immediately. A very kind doctor came in, glanced through his chart and reviewed his list of current meds. He thinks that two of the meds E is on are having a cumulative sedative effect, causing him to be EXTRA sedated. He has been on both meds since Tues/Wed, and one of the nurses told me that one of those meds typically is not given for more than a few days in a row for this very reason. Both meds are being discontinued immediately. They are pushing IV fluids through him more quickly to flush the meds out.

In the meantime, they are checking his BP every 15 minutes. The last reading was 73/54, so slightly better but still really low. HR still in 80s. He is super lethargic and cannot be totally awakened out of sleep. Everyone found it to be encouraging that when we were poking at him to wake up, he was able to groggily yell at us, "STOP TOUCHING ME!" 

I can honestly say that I have NEVER panicked like that before here in the hospital. I was so close to having a full-blown panic attack when the ICU doctor arrived. His calm demeanor and confidence about what was going on helped me feel better instantly. I told the nurse not to tell me the BP readings anymore unless they have improved, and I situated E's IV pole so that it blocks my view of his heart rate monitor.

I'm going to try to get some sleep here next to him. Thank you all so much for rallying for our boy. Please don't stop the prayers!

Prayers needed!

PLEASE pray for Elijah right now...and maybe for me, too, as I feel like I'm on the verge of a panic attack. The nurse just checked his blood pressure and it was low. Low for the average person, but really low for Elijah. He won't fully wake up for us right now and is SUPER lethargic. I just requested that a doctor come in to check things out, so we are waiting on that.