Friday, January 31, 2014

EEG results

For the record, I have never in the history of this 7-year-old blog written more entries within a single month. Lots of entries = lots of commotion.

As we were leaving Dan's beautiful grandmother's celebration service today, I saw that I had received a voicemail message. It was Dr. Judy. No news is good news, so quick news is...a punch in the gut. Elijah's EEG from yesterday showed abnormal results. That is the only information Dr. Judy received and we know nothing beyond that.

I called her back to chat in person, and she was generous (as always) with the time she took to talk to me. We went over some possible reasons for the abnormal results, some of them being: seizures, a sleep disorder and Tourette's Syndrome. She went back to the fact that the Valium helped Elijah's behavior for a period, which made her think seizures were the issue (apparently Valium can help with seizures, as well). But then, a sleep disorder could lead to major sleep deprivation, which could lead to involuntary body movements. She didn't think we had to worry about "the really bad stuff" since whatever we are dealing with has been going on for a while.

I'm trying not to think too much about it. I need to stop myself before going to very bad, fearful places. I have to trust that everything will be ok and that this is just another bump in his very colorful journey.

Next step: get into see Dr. J (neuro) to go over the results and learn what exactly is going on. Baby steps. little step at a time.

Thursday, January 30, 2014

EEG and sleep appointment...check!

Last night we decided to bring the boys to Wednesday night church for maybe only the second time ever. We were instructed to give Elijah only a few hours of sleep for this morning's test, in which he was to be completely sleep-deprived. Typically we have him in bed by 6-6:30p because that is the only way we can keep him even mildly rested. Last night we had the freedom to actually get out of the house in the evening as a family! We put E to bed late, at almost 11:00p (SO late for him!), and woke him up at 4:00a.

If you've been reading our blog for a while, you might remember that 2011 almost broke me. That was the year of Elijah's third open heart surgery. My worries surrounding that (not Elijah's fault AT own issues completely), combined with a horrible work situation (and ultimately the loss of my job), led to major anxiety and sleep-deprivation...which led to all sorts of physical and mental struggles.

Last night as I was trying to fall asleep, I felt an anxiety creep into my insides that I hadn't felt since that dark time. I felt that hopeless, anxious, unsettling feeling trying to make its way back into my bones. This new neurological concern for Elijah is so scary for me. It is uncharted territory that I honestly want nothing to do with. I kept thinking over and over last night...aren't heart/hearing/everything-else issues plenty? Hasn't he been through enough?!

Dan graciously offered to bring Elijah to the EEG testing at Children's this morning. I was kind of a wreck about it, and my husband is so good about knowing when to step in and just do things. Sammy and I waved goodbye as they literally drove off into a blizzard, making me even more anxious. I spent my morning worrying, allowing myself to visit very dark places and doing a lot of crying. Thanks to two of my very cherished friends, I was able to pull myself out of the madness. Heather and Sarah, THANK YOU! You two saved me today.

Sarah told me, "Megan, STOP! Go look into a mirror. Tell the devil to go away and think of how much God loves Elijah. You cannot let your mind go to that bad place." I thought, Oh my goodness, she is so right. What am I doing? So I did what she said and I was able to turn it around. And I've literally been thanking Jesus for it all day. Over and over...times a thousand. I refuse to go back to that very bad place I was at in 2011. No thank you, not going back there.

Ok, so news from E's appointments today.. the EEG went fine. Elijah was even able to fall asleep for a bit, which they prefer. We won't get those results for about a week, as his pediatrician and neurologist both need to review the results.

The sleep appointment went ok, as well. Dan said that Dr. W had an idea for a med that might help Elijah sleep better, after hearing that the Valium helped him with sleep (possibly) and behavior (for sure). A lot of things depend on...uh, well, so many other things. We have so many appointments coming up and we are looking forward to acquiring valuable opinions/info from a handful of different smart doctors. We don't want to medicate E or make major decisions until we gather more info and do more testing.

The sleep doc thought that the EEG and getting thoughts from neuro was a really great place to start. Baby steps! Our next step is ENT on Monday. I'm curious to know what the hearing test will reveal, as Elijah keeps insisting that he can hear "something" out of his left ear (??). I am also hoping that Dr. L will agree that it's best for E to go back to school on a part-time basis to start with. We do not feel he can handle full days at this point.

Tomorrow we will attend a funeral for Dan's precious, kind grandmother, who passed away on Sunday of this week. She was an amazing woman who loved Jesus. It is sad to say goodbye, but we are so happy to know where she is right now.

Thank you all so much for checking in and for the prayers! xo

Tuesday, January 28, 2014

Hand me that blue sky piece, please. The blue one. The one that goes next to that blue one.

Forget the 100-piece puzzle, I'm going for the 1,000-piecer! I can't even believe things could possibly become any more complicated for our boy at this point, we go! I anticipate 2014 being the ride of a lifetime. Lots of ups and downs, but I know many answers will come our way, as well. I KNOW we will be taken care of. I know Jesus has our boys in his loving arms, and us as well.

First of all, Elijah is off of the Valium, yay! And...Elijah is off of the Valium, boo! The good side is that his vestibular system appears to have readjusted since surgery and this is wonderful news. He is no longer dizzy or struggling with nausea, and he is not needing medication to control these things. The bad side is that the medication was REALLY helping out with his behavior. After a few days of being off it, things are back to "normal." :( He is back to screaming at us when we ask him to do something (anything) and lashing out at Sammy (uhh, everyone) when things don't go his way. He is back to using icky tones when he talks (pretty much constantly) and saying unkind things to all of us.

I took Elijah to see his primary doctor this morning. My main goal of the visit was to address some things we have been noticing since surgery. His body has been doing A LOT of motor tics, and occasional vocal tics, as well. He is constantly rolling his head in a figure eight pattern with his eyes looking straight up. Sometimes his hands simultaneously open and close. Throw in some arm flapping and body jerking. His eyes seem to get "stuck" sometimes and go up and down when he looks at certain lights. At random times he will blurt out a loud sound that seems to satisfy something inside of him. All of these things (minus the eye movements) are things he has done his whole life. He has just never done them quite so much or intensely before.

Dr. Judy wants Elijah to have an EEG done on his brain in hopes of ruling out any "electrical" issues. There is a chance that these tics are benign responses to stress (recent surgery/difficult recovery), but they could also be signs of a neurological disorder such as tourette's syndrome. Or possibly some sort of seizure disorder, which I don't feel in my gut is the issue. I laughed loudly when she told me that the EEG had to be done while E was sleep-deprived. Ha! He is always sleep-deprived! She said, "Yeah, but you might need to wake him up as early as 4am!" Trust me, he will be wide awake. You have nooo idea.

We will be doing the EEG at Children's this Thursday morning. Coincidentally, that afternoon is his appointment at the sleep clinic. Next Monday brings surgery follow-up with ENT, including a hearing test to confirm left-sided deafness. If we can figure out the financial side of things, the memory-learning-attention testing will begin next Wednesday. Dr. Judy suggested we also get him in to see his neurologist and opthalmologist with these new symptoms, so I'll schedule those appointments tomorrow. We also need to connect with an audiologist. Thanks to our very kind friends Amy and Mitch, we have a few incredible (the "best") recommendations for pediatric audiologists, which we are very thankful for. I have also scheduled an appointment for E to see a developmental pediatrician (appointment not till April, ugh), who will be able to address OCD, anxiety, ADD, or whatever the heck is going on with our boy. Which leads me to..

Dr. Judy told me today that it is a really good sign that Elijah's behavior improved while he was taking a low dose of Valium. This could mean that anxiety is at the root of his struggles (sleep, too, obviously...but which comes first? The chicken or the egg?). Not that we ever wish for him to struggle with anxiety, but this is something we can address. And it could be a very big piece of the puzzle. Since his appointment with the developmental ped is scheduled so far out, Dr. Judy, being the incredible doctor that she is, offered to call this doc and ask for Elijah to be moved up in the schedule. She also told me that she would give Dr. M a brief overview of E and get his thoughts on possibly starting an anti-anxiety med. Typically we wouldn't want to cloud his brain or alter him in any way during the investigative process, but he is obviously really struggling. It's a bit of a tricky situation.

Dr. Judy verbalized what Dan and I have felt for a long time now. There is something we're missing. Once we figure out X, everything else will fall into place. We just don't know what X is yet. And things feel really complicated and overwhelming right now. I am assuming Dr. L (ENT) will clear Elijah to go back to school next week, which means calls from the principal and bad reports from the teacher will be starting up again, adding to the craziness. :(

We continue to battle for our amazing boy! BOTH of our amazing boys! We love them both so much. We couldn't do any of this without a faith in God, you guys! I don't know how anyone gets through difficult times without Him. We appreciate your prayers so much. Thanks for reading!

Sunday, January 26, 2014

Elijah's "resume" :)

I plan to hand this out to all people who care for or educate our AWESOME boy! WE LOVE YOU, ELIJAH! AND your sweet little bro! :)

Friday, January 24, 2014

A weekend with my precious boys (and a lot of Pillow Pets)

The Pillow Pets keep rolling in, which we are SO happy about! Every day we are overwhelmed by the number of packages that arrive at our door. There is still time to help! Elijah particularly gets SO EXCITED about each delivery. "MORE PILLOW PETS, MOM! The kids are going to be SO HAPPY!"

The boys have been playing so well together lately. I can sit in the loft and work for an entire hour while they play in their bedroom or downstairs. And they GET ALONG! The main difference between now and a month ago is that Elijah is MUCH slower to anger. He is so much more patient with Sammy and he lets him take the lead (which Sammy prefers). I wonder if something about surgery has made him feel better...or if the low dose of Valium he is still on might be helping him to be more chill.

(The boys playing with their stuffed animals in their room..)

I brought Elijah to his first memory-learning-attention appointment yesterday. When we arrived I learned that the visits are NOT covered by his insurance, which nearly caused me to have a panic attack in the office as I put $550 onto my credit card. The entire ordeal is $3.5k, and we do not have that money right now. We need to make some major decisions. I feel in my gut that this place will provide us with valuable answers, but...the financial side is so tricky.

The initial visit involved a lot of questions. The doctor gave Elijah a brain "puzzle" to put together while he and I chatted. Elijah did his thing and put the entire brain together with total patience and perseverance. The doctor later told me that it is extremely rare that anyone (especially a child) is able to put the brain together. When he left the room at one point, I tried it myself and COULD NOT get even two of the pieces together! It was crazy! We've always known this, but our boy is so very smart. BOTH of our boys are so smart! Sammy amazes me every day with his smart little brain.

I felt like the doctor did a good job of wrapping his head around our complicated situation. Assuming our money tree starts blossoming in the next few weeks, testing will begin on February 5th! [insert nervous laughter]

E had his second round of homebound schooling today and it went great! Dan is out of town for the weekend, so the little boys and I are enjoying quality mama-boy time. We had pizza-movie night tonight. Tomorrow will involve playing, snuggling and tickling. Thanks for checking in!

Wednesday, January 22, 2014

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."

Tuesday, January 21, 2014

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 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!

Friday, January 17, 2014

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!

Thursday, January 16, 2014

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!

Wednesday, January 15, 2014

What to do (and not do) when someone you know is going through a difficult time

Since our recent stint in the hospital with Elijah, I have been compiling a mental list of the things that make our lives easier (and more difficult) when we are there. I absolutely do NOT place blame on anyone for not knowing these things. I didn't know them either until we became regulars at Minneapolis Children's Hospital. I compiled this list for those of you who struggle with knowing what to say or do to help a friend or family member who is going through a difficult time. I hope you find this helpful!

- Pray. This is the single most helpful thing you can do. Ask what specifically to pray for and PRAY PRAY PRAY! God hears every prayer.

- Don't ignore the situation. I understand that not everyone is comfortable handling difficult situations, but it really takes very little effort to provide comfort. Some of the most comforting messages we receive are super simple. "I love you and I'm praying!" speaks volumes. Send an email or text or leave a voicemail. All of these things are easy and can really go a long way. Also, do not avoid the topic in conversation. It is good to ask how things are going and how everyone involved is doing. Even if the situation is a difficult one, don't be afraid to talk about it. This paragraph applies to close friends and family members, and doesn't necessarily apply to acquaintances or distant relatives. That's not to say that acquaintances should not offer support if it is on their hearts to do so. I have had acquaintances do very kind things for us which has transformed our relationships into great friendships.

- Offer to bring food. Through all of the time we have spent in the hospital with Elijah, this has been one of the things that has been the most valuable for Dan and me. When our boy is sick, we tend to use all of our energy caring for him. We rarely think about our own needs, so having food brought to us is a reminder to nourish our own bodies. After some of Elijah's bigger surgeries, my sister-in-law sent out an email to our close friends and family members asking if they'd like to contribute meals. She then compiled a schedule/menu for us so that Dan and I were well fed for weeks. This was hugely helpful! (Tip: If you bring a homemade meal and the recipients are in a hospital, include paper plates, forks and napkins. Also, put the food in containers that you do not want to be returned.) If homemade meals aren't your thing, find out which restaurants deliver to the hospital and purchase a gift card from that restaurant. Snacks are also always appreciated. Bottled water, trail mix, a bag of candy or a tall cup of hot coffee are all appreciated consumable items!

- Avoid the generic "Let me know if there's anything I can do!" We have received many of these open offers and I know there is nothing but good intentions and well meaning behind them, but they are too general. What are you willing to do? Come sit with Elijah while I run down to the cafeteria or find somewhere to take a nap? Bring a meal? Chat on the phone so I can vent? Pray? Have Sammy over to your house for a few hours? Water my plants (if I had plants)? If you truly are willing and able to help in some way, there is a much better chance that your offer will be accepted if you are specific.

- Stop by for a visit! But please ask first. I am totally honest with people when they ask if it is a good day to stop by. If it's not, I will let you know. Most people will. Don't be offended if your offer to visit is turned down. Most of the time I will say yes because barring a medical concern, visitors help lift spirits. Be mindful of a few key things during hospital visits. Wash your hands before coming into the room (antibacterial soap is on the wall outside/inside of each room). Don't stay too long, don't be too loud and don't bring small children. If a nurse or doctor comes into the room, leave the patient's bedside and pause the conversation so they can speak if needed. And do not feel like you need to bring a gift. Your love and presence is enough! I know that it can be really difficult for people to come to a hospital. Your efforts are recognized and appreciated!

- If it is on your heart to bring a gift, get something you think would make the recipient the most comfortable. If he/she is in a hospital, bring age-appropriate comfort items or distractions. Some good ideas are stuffed animals, blankets, books, pillows, magazines, paper and crayons/pencils, handheld games, iTunes gift cards or journals. Balloons make kids smile. Flowers make mamas smile. There are certain units in the hospital that do not allow flowers, so ask about this before buying them.

- Have extra grace and don't expect replies or thank you cards for your gifts/efforts. If you send an email or leave a voicemail expressing love and support, begin by saying, "Please do not feel you need to reply to this!" When this line precedes an email, text or voicemail, I whisper to myself, "THANK YOU." Keep in mind that sleep-deprivation and lack of time are often factors in difficult situations. I am uplifted by and thankful for every single email, text, phone call, gift, meal and visit, but it is impossible to give a proper reply and "thank you" to every single one. These situations are unique and do not follow the rules in the etiquette books. Miss Manners' rules can be tossed right out the window.

- Be VERY careful when expressing your own opinions/concerns about the patient's medical care. This can be a touchy topic because there is a lot of grey area. We have friends and family members who are doctors and nurses, and I welcome them (gently) offering their thoughts about specifics regarding Elijah's medical care, but it can be irritating to receive opinionated comments from people who know very little about my child's medical history. I actually withhold information about some of Elijah's medical details because I cannot bear to hear things such as, "That doesn't sound normal!" or "Are you sure he should be walking so soon?" or "My Uncle Bill has only one kidney, too, and he's not supposed to be on that medication!" Be sensitive and if you DO feel compelled to express your opinions, make sure you are being helpful and do it gently. Keep in mind that there are usually anxieties involved, especially with a mother and her sick child. When I am sleep-deprived I become anxious and I do not want to hear about others' anxieties regarding my son! Please trust that the patient's medical team is looking out for him/her the very best they can. If you suspect that a major medical error has been made or if your opinions were asked for, forget this entire paragraph!

Be as helpful as you want to be! ANY amount of love is welcomed and very appreciated during difficult times!


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?!

Tuesday, January 14, 2014

Brotherly love

I heard this coming from the backseat today on our way home from Ikea: "Elijah, will you hold my hand?" I turned around to see the sweetest brotherly love. I love my boys! 

We finally got Sammy a big-boy bed! We'll put it together tomorrow so he can say goodbye to the crib he has been sleeping in for 3.5 years! He keeps saying, "I am NOT a baby! I am a BIG BOY!" Yes you are, sweet boy.

Elijah had a much more alert day today after being free of the Valium. He is still super wobbly when walking, but he is definitely doing better than yesterday. Each new day brings amazing progress! I have some worries about some things his eyes are doing, but I'll share about that later to avoid comments from the peanut gallery (unwarranted comments make me anxious).

Dan and I were able to get out of the house ALONE tonight for a bit, thanks to our amazing friend and babysitter Sam. She watched the boys for free so we could have a few hours to ourselves. We are so happy Sam is pursuing her dreams in college, but we miss her tremendously. No one compares to her. She has such a special bond with both of our boys and we are very grateful that she is a part of our lives!

Thanks for checking in! Wishing you all the very best this week!

Monday, January 13, 2014

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

Project Pillow Pet

We are home from the hospital with Elijah and it is STRONGLY on my heart to help put smiles on the faces of sick children. We are grateful for the smiles we saw on E's face over the past week, so we would like to help pass along a tiny bit of happiness to other children. We saw some really sad things in the hospital every day, you guys. Any bit of happiness there is a truly wonderful thing.

If it is on your heart to do so, please consider donating a Pillow Pet (or $, if that is easier) for this great cause! We plan to gather as many PPs (or ANY comfort item) as we can and bring them to Minneapolis Children's Hospital at the end of the month. Help us gather a TON of them. The more PPs, the more smiles!

Click on the link below for details (or email me at mmporta at gmail dot com). THANK YOU!

Sunday, January 12, 2014

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.

Scary night

Ugh, what a night! I am tired, so I'll make this quick. E's BP stayed low until just before 2a, when we saw his lowest number yet (72/42). I started to panic again, so decided I was going to wake him up. I poked, shook, talked loudly to, put my cold hands on his chest/face. Ten minutes or so later he started saying things to me, although it sounded like he had been drinking heavily. Once "awake," his BP was ~80/55. I crawled into bed with him and kept poking at him and with more time, the more awake he became. By 3:00 he was WIDE AWAKE. And guess what! He has been awake ever since! Yikes! Now his readings are back to normal. Praise God! Dr. L just stopped in and agreed that the combination of the two meds caused the low BP. One of the meds is being discontinued. The other we need to keep on board to help with nausea.

Today we will begin attempting meds orally, which is a step toward home. Elijah is playing with play-doh right now and eating breakfast (not play-doh for breakfast, ha!) and he is back to his usual spunky, funny, alert self. Last night was scary. One of my scariest hospital nights yet. I am so incredibly thankful for all of YOU and your prayers and kind words. Thank you from the bottom of my heart!

Saturday, January 11, 2014


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.

Making progress

We got Elijah upright a couple times today. He sat in a chair for 15 minutes before getting very tired...and then very sick (which we expected). We really tried to push him, against his wishes and with some complaining (I don't blame him one bit). He vomited quite a bit between the time he woke up this morning and 2:00. After that, we took it easy with moving him around so he could keep food down. And he did! He had yogurt, crackers, a fortune cookie, banana slices, water and juice, and it is all still in his belly! He got really close to losing it all around 6:00, but managed to keep it down. Evenings have been his most difficult time for nausea/vomiting, so this is huge!

We have been given so much love today! Dan's parents stopped by this afternoon with takeout for me (yummy and SO appreciated!) and love for both Elijah and me. Pastor Londa stopped by with two of her amazing children to give us love. We have been attending her church for about a year now and LOVE it. It was so nice to get to know her better! Her kids were very kind and they kept Elijah company while Londa and I chatted in the cafeteria downstairs. I was fighting off some major negative thoughts/feelings for most of the day, so our visitors were the perfect distraction. They were the sunshine in our day!

I'm guessing we will be here a couple more days, but we will get the doctor's thoughts in the morning. Good night! Thank you for the prayers and love!

The nausea battle

Elijah had another night free of nausea and vomiting, but has been vomiting since waking up. Dr. L is pleased that he is moving in the right direction, but we will not be able to leave until the vomiting is under control.

Sammy and I had a breakfast date at Perkins this morning! It was great until the bathroom Lego tragedy occurred. His Lego police truck fell off the counter and smashed into a million pieces. Many tears were shed as I scrambled around on my hands and knees desperately trying to find all of the pieces and get the police vehicle back together. A memorable end to a memorable date with my cutie pie.

Dan and I are swapping duties this morning, so I'll be with Elijah at the hospital today. Thank you for the continued prayers!

Friday, January 10, 2014

Forget baby's a HUGE step!

Please excuse the pull-up, but I am so excited to share this photo! Dan got Elijah OUT OF BED tonight and on his feet! It only lasted a few seconds and was followed by a bout of sickness, but.....HUGE PROGRESS! My frown has been turned upside down.

Baby steps

Elijah showed improvement today! He went from 8ish this morning until 5ish this evening with NO vomiting and minimal nausea. He even kept water/juice/crackers down during that time. Then Dan thought he might be able to handle a light dinner, but that didn't go so well and he has vomited a few times since.

Elijah even willingly raised his bed up a little more than what we've been doing and he tolerated that well. Baby steps!

One thing leaving me unsettled is Elijah's occasional involuntary eye movements. I've mentioned this to the doctors and they have not seemed concerned. Hopefully it's just part of the process, but it freaks me out every time.

I felt a sadness today that I hadn't felt yet. I feel like Dan and I stay pretty positive about these ordeals, but we have our weak times. Today was a weak day for me. I feel an overwhelming sadness about Elijah having to endure so much and it is hard on my heart not to be able to do anything to make him feel better or speed this process along.

Tomorrow is a new day!

Needing a turn-around!

Elijah slept from 7p-4a and didn't wake up feeling sick one time during the night! At 5:00 he emptied his belly and the contents showed that he likely has now developed gastritis. He still is unable to keep anything down, which means we aren't going anywhere. The ENT team told us to hold off on the PT's recommendations until Elijah is "over the hump," which should hopefully happen....soon?! So we continue to wait this out until he can keep something down. 

When the docs were in here this morning Elijah started doing his silly chattering and Dr. L said, "Hmmm, has he been acting especially goofy from the meds?" I said, "Nope, this is baseline goofy." The team laughed. Dan will be here in a few hours so we can swap duties. Please continue to pray for E to keep something in his stomach today. We need a turn-around day!

Thursday, January 9, 2014

Tired brain (mine this time)

Same story this evening...dizziness, nausea, vomiting, repeat, repeat, repeat.. I do have a story that made Elijah's nurse and I laugh today. Elijah mentioned that his left shoulder was hurting. I was puzzled and after thinking about it for a few seconds, I said, "I bet it's because he won't move that arm (that his IV is on)." She looked at me strangely and said, "Yeah, that's what you said yesterday." I have ZERO recollection of saying that yesterday, or even talking about Elijah's shoulder at all. What else did my tired brain block out?!

E is asleep, so I'm off to rest, too! Thanks for the continued prayers!

Time to retrain the brain

We had an extensive visit with a physical therapist this afternoon and we gained some insight about what is making Elijah so dizzy. She ruled out vestibular issues and is thinking this is more of an eye issue. His brain and eyes aren't in sync, for whatever reason. Body movements (especially involving his head) are VERY tough for him and either make him experience nausea or dizziness (or both). Now we begin the process of re-training his brain so that it knows that movement is normal.

The PT gave me some eye strengthening exercises to do with him and we also need to start pushing him to sit up, roll over, move his head, etc, even as uncomfortable as it might make him. She had him read a few pages in a book and even that made him vomit. There is no way to know how long this process will take. It could happen quickly, or it could be months. As soon as he can keep food and water down consistently, we can head home. It could take a handful of days or even a week (or more) to get to that point.

This is all a bit frustrating, but at least we know how to proceed. AND...we truly are blessed. Things could be so much worse. We are grateful for our boy (BOTH of our boys!) and we are constantly amazed at his strength and smile through it all. Thanks for the prayers! To be continued..

Lego smiles

The Lego ambulance and fire truck are made! E is one happy boy. He keeps saying, "Aww! Thanks, Mom! Thank you so much for these Legos!" 

It kinda seems like we might be here for a while. If his body is moved at ALL, he throws up. We talked to PT briefly and they seemed to think they might not be able to help (??). He is resting now and just received another round of Valium to help alleviate dizziness/nausea. Thank you for the kind messages, texts, calls and of course prayers!

The dizziness continues

Dan and I did the Sammy swap and I will be at the hospital with Elijah today. He is still dealing with dizziness, nausea and vomiting, especially when he sits up or moves around. I picked up a new box of Legos for him on my way in and I knew it would put a smile on his beautiful face. Please keep him in your prayers today! Pray for the dizziness to go away!

Wednesday, January 8, 2014

Making progress

Dan and Elijah had a mostly good day at the hospital today and they will be spending tonight there. Elijah was handling food well all day, but ended up vomiting a few times after dinner and meds. The news was disheartening, but I'm trying to keep things in perspective. Last night he couldn't even open his eyes without vomiting. Progress! Dr. L explained to me this morning that his body is basically having to "rewire" itself right now. Inner ear stuff can be complicated, with balance and stomach being so closely involved. It is "not uncommon" for a person to require 2-3 days to get back on their feet after such a surgery. Elijah is still unable to sit up without having the sensation that the room is spinning. We are praying for progress in this area tomorrow and that he will be ready to come home! 

It is difficult for me not to be at the hospital with Elijah right now, but it has been so nice to spend one-on-one time with Sammy today. He gets upset with me any time that I spend more than a few hours away from him, and that was definitely evident today. He's such a sensitive boy. He loves his family! And we love him so much back! 

We will see how the night goes for Elijah. If he can hold food down and if we are able to keep him upright, we might be able to bring him home tomorrow. If not, we may be staying another night in the hospital. 

I have much on my mind regarding this whole ordeal. It has been tough to swallow. For now, maintenance. Stay rested and take care of precious ones. Later, the aftermath. I'll deal with that when it comes. Thank you for checking in! Please pray for our boy, if it is on your heart. Pray for total healing (emotional and physical) and for a miracle to happen with his hearing obstacle. Thank you!

Valium to the rescue!

Sammy and Elijah got to see each other briefly while Dan and I did the trade-off. He is at the hospital now with Elijah and I'm home with Sammy for a bit with the intent to spend time with my cutie and to NAP. 

Just before I left, Elijah had received his first big dose of Valium and was responding well to it. No more nausea or vomiting! And now a few hours later, Dan texted and said that he is keeping water and crackers down! Yay! Elijah was still feeling really dizzy when we tried to get him out of bed this morning, but his dizziness while lying down was MUCH better. Things seem to be turning around! Hoping we can get him home sometime today!

Rough night

This was my view for most of the night.  Between vomit-catching, hand-holding, hair-rubbing, worrying and listening to the extremely loud pipes in the wall 1 foot from my head...not much sleep was had. I am expecting the human to zombie transformation to begin any time. 

Dr. L stopped in this morning and saw the puke bowl propped under E's chin. He explained that some people respond to this type of surgery with severe vertigo symptoms. Every time he opens his eyes he gets dizzy and experiences nausea/vomiting. He threw up A TON during the night. There is absolutely nothing left in his stomach. He is feeling sad and crummy.  Dr. L said to expect to be here another night or two. Please pray for a turn-around today and for him to be able to keep food down.

Tuesday, January 7, 2014

Staying over

When E is awake he becomes very dizzy, causing non-stop vomiting. When he's asleep he feels fine. I'm staying in the hospital with him overnight so Dan can go be with Sammy and hopefully get a good night of rest (he wanted me to go home and rest but I refuse to leave my boy tonight). Praying for the dizziness and vomiting to subside and for a much better day tomorrow!

Ear recovery

No matter how huge he looks on my lap, he will always be my baby. 

E has had a difficult time coming out of anesthesia. He is super groggy and has been vomiting. Now he's in some pain so we are waiting for his tummy to settle a bit. If things turn around in the next hour we could still head home. Just waiting it out while we half-watch Monsters University and drift in and out of sleep.

Gut punch

Dan and I are in the midst of trying to process the information we just received. Elijah did great during surgery, but we received a punch in our guts when we learned what Dr. L found inside his left ear. The footplate that was intact and healthy last March has been somehow broken in half (perhaps due to mass growth) at some point during the last few months. What does this mean? Elijah is completely deaf in that ear with little chance of ever having hearing restored. We will need to repeat today's surgery in 6 months and it would be a big concern if there was another round of cholesteatoma regrowth at that point. In the meantime, there IS something we can do to help the sound travel through his skull on the deaf side which will help things not to feel so weird for him (called a bone conductive aid). We will explore this avenue if his hearing test a month from now confirms total deafness. Dr. L said that in all his years of being an ENT, he has never come across this scenario.

There's a chance Elijah will experience dizziness and vomiting when he wakes up. If this is the case, we will spend the night here. If he feels fine, we will head home.

I feel so sad for our boy right now. With everything he has endured, it is hard for me to grasp this. Thank you all for your prayers.

Still working

Dr. L is still working on removing the cholesteatoma. It is situated in a precarious spot, near some facial nerves and other delicate areas so it is taking a long time. I asked about reconstruction and it sounds like that is probably not going to happen today, although Dr. L has not made that decision for certain yet. More waiting and praying!

First ear update

First update from OR is not exactly what we wanted to hear. The cholesteatoma has regrown.  Dr. L found three pearl-sized "bits" of tissue but he doesn't know how extensive the situation is or what lies beneath. He has not made a decision about whether or not to proceed with reconstructing ear bones. Elijah is otherwise doing great! Next update will be in an hour. In the, my iPhone and American Horror Story!  (Dan thinks I'm crazy.)

Ready for ear surgery!

Elijah and Minion Dave are ready for surgery!

Sunday, January 5, 2014

Great start to 2014!

1,620 miles later, we are home from another incredible road trip. Our trusty Camry got us to Indiana and northern Michigan and back home. We spent five days with my dad, stepmom, brother and my brother's sweet girlfriend in Indiana. We all had such a fun and relaxing time! We took tons of naps (uhmm, every day) and we played in the snow a lot. Our first day involved a Christmas celebration that the boys adored.

Isn't Uncle Joel so cool.

Joel and Bree are the perfect gift givers. Sammy loved his pirate telescope and Elijah LOVED his Lego RV.

Something I did not capture any pictures of was our trip to a state park to go tobogganing! Oh my goodness, what an adventure! The toboggan track was 70 years old and went 30-40 miles per hour. I knew Sammy wouldn't dig it, so he sat in the chalet with Grammie at first and then Gramps. Our first trip down the icy tracks involved me in the front, GRAMPS in the middle (so proud of him for doing this!) and Dan in the rear. We got our speed up to 31 mph! Wooo! Elijah even willingly went down himself three times! Once with Uncle Joel/Bree, once with Grammie and Bree and the last time with Dan and me. I was so proud of him! I could definitely see his anxiety building up before each "race," but once we were moving he had a blast!

We had tons of snuggle time on the couch in the house we rented in Indiana, which will be perhaps my favorite memory of the trip.

Dan started a fire a couple days in a row. It was COLD, so we needed warming...but we also wanted to be outside, enjoying the fresh air and newly fallen snow.

Our lucky boys got to make and eat s'mores by the frozen lake!

Some silly Elijah faces..

Does anyone see Dan? I think he went inside. Oh wait..

I LOVE this photo of the boys with their Grammie and Gramps.

More snuggle time.

Another photo I love! Elijah and Gramps!

Bree and I made an awesome snowman in the freezing cold. Sammy named him "Sammy."

Fun times inside.

Story time with Gramps.

We sadly departed our rented Indiana home and said good-bye to Joel and Bree. I miss them! We drove up to northern Michigan to attend my niece Emily's wedding. We stayed right on Lake Michigan. It was beautiful!

The boys were ring bearers in the wedding. They did great and they looked even better. Look at these handsome boys!

We are back home and adjusting to the normal routine. Kind of. Tomorrow is our school-has-been-canceled-because-of-the-cold-temps day and Tuesday Elijah is having surgery on his ear. We are dreading it, but it is necessary. Thanks for checking in! Wishing you all the best!