Ear update

Dan brought Elijah to see his ENT doc this week for his post-surgery follow up. He had a little bit of dried blood/gunk in his ear, so we will do ear drops for a week to hopefully loosen it up. We will head back mid-August for his next appointment. Three-ish months from that point will be his prosthesis placement surgery, which puts us at Oct-Nov.

I have been keeping E's school nurse/caregivers updated regarding his ear issues, and being the AMAZING team that they are they have formulated an Elijah Plan. To be honest, we haven't noticed that Elijah has been having much difficulty hearing. He seems to have adapted pretty darn well to having hearing in only one ear. When I ask him how his ear/hearing is feeling, he says, "It feels great! It's all better, Mom!" When this prosthesis is placed, he is going to be startled at how well he'll be able to hear!

E's "team" at school is forming a plan for the first part of next year, which made me cry happy tears as I was chatting with the nurse on the phone. We plan to have him on a 504, which assists any student with a disability (temporary or permanent). He will have an audiologist that will work with him and his first grade teacher, ensuring that he receives the best help possible to hear what is going on in the classroom. Needless to say, we are very happy about his team being so proactive. We adore his care team! They have taken such good care of our oldest boy.

That's all for now. Today was chilly and rainy, so Dan was home from work and we all had a pizza-movie night which may or may not have involved Willy Wonka. We are looking forward to the weekend! Have a great one, friends and family! Thank you for checking in!

Summer is here, BLESS THE LORD!

Summer weather is finally here, yay! We have been LOVING our time outside, which has thrown a wrench in our routines (eating dinner as a family at the dining room table, etc.) but we are fine with that. We have been without warmth for so long that we are willing to throw a few rules out the window in order to enjoy the delicious weather.

One of the routines/traditions we established through the winter was Pizza-Movie night every Friday night. It has become a weekly routine that we have all looked forward to every week. 

Now that the weather is getting nicer, I thought it might be a good idea to transform Pizza-Movie night into Picnic-Popsicle night! The boys are very excited about that idea. We tried it for the first time last week and it was a success.

As a family we experienced much growth over this 2013 winter. We now have a very very awesome and spirit-filled church that we can call our own. We have family dinners almost every night with near-proper-ness (ha!). We have implemented "No Technology Tuesdays" and the boys have completely adapted to this with no complaints. We read the Bible regularly and Jesus is an integral part of all of our lives. We have experienced major spiritual growth as a family this winter and we are soooo happy about all of this!

We are excited about what this summer will bring. We have MANY fun adventures in store!

Here is a video from the past few months that makes us all very happy! Bless the Lord!!!

The Mask, and...is spring finally here?!

I had lunch with my sweet friend Sue today and she made me remember that I hadn't written an update about THE MASK and how Elijah dealt with that during his surgery. I've been so caught up with the details that I haven't thought to write an update about that. After all of your prayers, letters, emails and cards, I have to tell you that YOUR PRAYERS HELPED!

(Here's E from tonight, dressed as a dragon and wandering around outside. We had some sidewalk gawkers. :)

We were sure to get E a good heaping dose of Versed before his surgery. He became totally relaxed and loopy, which was a good thing. Dan took him back to the OR, as he usually does (I still can't stomach it after the one time I went) and he said that in standard Elijah fashion he attempted to distract everyone when the mask came out. "Hey guys! I....I have a qu-question!" "Oh, what's your question, Elijah?" "Uhh, ummmm, uhhhh..." After three rounds of this, they finally put the mask on his face and put him to sleep. Dan said he put up a tiny fight, but NOTHING compared to usual. From now on, we will go the Versed route. Thank you all for your prayers about this and your comforting encouraging letters! Elijah and Sammy have adored them and we are grateful beyond words.

We are enjoying the beautiful weather! We're hoping it sticks around this time. It is May, right?!

I tried taking photos of Sammy tonight, and he put up such a fuss which is further proof that he and his brother are such opposites. "NO, MOMMY! NOOOOOO PICTURES!"

Sammy is still sooo independent. He certainly needs control of MOST things in his little life. He is such a funny kid. We love him to pieces!

Dan is back at work at the dropzone now Wed-Sun, so we are beginning to adjust to that. It is a new season!

I will end with a few funnies from the boys. If you're on Facebook, these will be repeats.

Sammy: [fake cough....faker cough....way faker cough..] MOMMY! I have a cough!
Me: I hear that! Are you okay?
Sammy: NOOOooo! I fink I'm DYING!

While waiting for the bus with Elijah one morning last week (in the snowy coldness) Elijah said, "The grass just growled at me, Mr. Slushy!" Not sure what that meant, but it made me laugh!

And here is Elijah, saying, "Mommy! Take a picture of ME!"

Elijah has been using the word "confused" in place of the word "disappointed," which I find to be super cute. He will say, "Mom! You aren't coming to the club with us today? I am very confused about that! I will miss you!" :) I refuse to correct him.

And last but not least, a few Elijah-isms to wrap up:
"Mom, you are the chocolate chips in my cookie."
"You are the elbow on my arm."
"You are the peaches in my oatmeal."
"You are the lobe on my ear."
"You are the woodpecker sitting on my long nose."

Have a good week! Thanks for checking in! xo

Healing ears and an exciting journey

We had a nice week, and we hope you did, as well. E's ear is healing nicely. The only time he complains about it is when we put on/take off shirts and even then, the complaints are minimal. He's such a tough kid. We will head to his post-surgical check-up on May 13th. Until then, we continue to take it as easy as possible! He has been so good about taking it easy when we ask him to.

Within the past few days I have planned a MAJOR summer vacation for the little boys and myself. Unfortunately, Dan will have to stay at home and work since that it his very busy time. :( We plan to travel to 15 states within 18 days! I must be crazy! But get this, we will (hopefully) meet fifteen heart friends and their parents, most of whom we have not yet met. It will be an amazing experience to bond with children and families who have walked similar paths. I cannot imagine what will be in store for us!

Until then, we continue to enjoy snow and cold weather. Isn't Minnesota wonderful? Thanks for reading and thanks for hanging in there with us.

Perspective

If you live in Minnesota, you are likely as happy as we are today! It was a GORGEOUS day! Prior to today and after E's surgery on Tuesday, we were feeling a bit like anxious, caged lions. We were all bickering and wanting out of our cage! We have had to take it extra easy since surgery, so we haven't gotten out much. Today was really good for us. We were able to visit Grandma and play outside and go out for frozen yogurt together (thanks, Grandma!).

Elijah's ear is healing nicely. We are almost totally weaned off the pain meds. He never complained about pain, but we stayed on top of the meds just to be on the safe side. The steri-strips are still intact (you can see them peeking out a little bit in the above pic), but we will let those fall off on their own.

For the past few days I've been dealing with the post-hospital/surgery junk. It happens every time, and I never expect it. Shouldn't I know by now? This time around was mild compared to past times, thankfully. It is always a period of heightened emotion and gratefulness. It's also a period of time when I am given a good dose of perspective. The things I thought were a big deal last Saturday are not a big deal today.

Elijah has endured a lot. When I consider the magnitude of it, where he is at today is nothing short of a miracle. The potty and behavioral issues we have struggled with are totally understandable, and honestly, it's a miracle that we aren't dealing with a multitude of other things. We feel extremely blessed. Not that I would EVER wish anxiety or pain on either of our boys, but time in the hospital always gives me a HUGE dose of grace and perspective and patience and love.

Thanks for checking in! I hope you are all having a GREAT weekend! Enjoy this beautiful weather! Love to all of you from all of us. xo

Ear surgery

I will tell you the good news up front to keep you from wondering! We are HOME (all except Sammy, who is at Grandma's house tonight--thank you, Grandma, for taking such good care of our boy tonight)! Elijah is soundly sleeping in our bed after a long day at the hospital. He was given lots o' drugs today, which makes for a sleepy boy. He has to wear a headband (that you will see in the below photos) for 24 hours to hold the gauze in place. The gauze is fairly bloody, but we are hoping for no fresh blood hereafter. Elijah is not in any pain, but we are staying on top of the pain meds just to be safe. He came out of surgery groggy but doing really well. NO CROUP, praise God! NO VOMITING, praise God! A little crabbiness, which is totally understandable! But feeling good, considering everything. One of the very thoughtful things he has received in the past few days was a Target gift card from my cousin Trevor (that I had placed safely into his little red wallet). The first coherent thing he said to me after surgery was, "Where is my wallet, MOM?!" "Uhh, it's safe at home!" "Well when can I go to Target!!" :)

The surgery took about 4.5 hours. When the surgeon came in to speak to us, the first thing he said was, "It was a sad day for Elijah's ear." :( The cholesteatoma (mass) that he removed had been growing in there for a while. He confirmed that this WAS the congenital variety as opposed to the acquired variety, so who knows how long it has been so big. And it was big! He called it "extensive" a few different times. It was so extensive that, get this, it actually DISSOLVED almost all of the bones inside his ear. I found that to be crazy! So the doctor removed the mass, the tissue that had grown into the mastoid and any bone remnants that were still floating around. Sadly, now Elijah is minus any ear bones in his left ear. The good news is that his footplate was totally intact, which means that hearing is possible! We will bring him back in for a prosthesis placement surgery in about six months, and after that there is a very good chance that most of his hearing will be restored. This is GREAT news, and it almost took away the sting from the rest of the news we received today.

We had to fight against feelings of anger today. Another major thing? Really?! What has he done to deserve all of this? But, we have to keep it in perspective. It could be so much worse, and we totally understand this. We never want him to have to endure MORE, but I have to believe there is a reason for all of this. He is one strong and STEADFAST boy. We will love and support him forever in every way that we can.

SAMMY! We love you so much, too! We will love and support you, as well, our very precious boy! You are an amazing little person and I cannot wait to squeeze you tomorrow morning!

Toothless in the snow

Doesn't he look adorable with his two front teeth missing?

Sammy is adorable, too, sword sticking out of mouth and all.

Today was just depressing! The temperature and wind chill outside felt like it was the beginning of January. It sleeted and snowed and we have a fresh layer of white on the ground. We are supposed to get MORE snow tonight! And Saturday! I wonder how many Minnesotans are depressed after this winter.

Other than THAT, we had a pretty normal day! Ha! We recently joined a gym, so we have been going there as often as possible. When Dan and I don't have to work in the mornings, we bring Sammy to the gym with us while E is at school. There is an awesome daycare area with kid-friendly activities. This is good for all of us! Dan and I can squeeze in a workout and Sammy can get used to being around other people in a safe environment. He is slowly getting more comfortable!

That's all for now! Thanks for checking in! I had best get back to saying curse words to the snow under my breath. :)