Saturday, April 27, 2013

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

Tuesday, April 23, 2013

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!

Thursday, April 18, 2013

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. :)

Wednesday, April 17, 2013

Warmth, snow, letters and stones

We are back in the frigid cold state of Minnesota. It is freezing outside! This is ridiculous! Needless to say, we enjoyed our vacation thoroughly. It was WARM and wonderful and tons of fun. Dan and I were able to sneak away to South Carolina by ourselves for two days. As always, the time passed too quickly. We are very thankful for my dad and stepmom's generosity, hospitality and help with our boys.



Fort Sumter!


The boys had a blast with Grammie and Gramps. They were able to do some pretty fun things while they were there, like go to an animal ranch where they fed animals from inside the car. The llamas tried to steal Gramps' bucket and Sammy's favorite animal was the cow.


Gramps' freezer is NEVER short on ice cream. :)


And every morning the boys helped Grammie feed the birds.


I spent my entire childhood getting onto airplanes in order to fly away from my dad. I'm still doing it, and I still hate it. I love my dad and stepmom so much! We all do. We have sad hearts today. We miss them.

My dad is having a small surgery next week sometime, so could I ask for your prayers for him? He is going to do AWESOME. Pray for a calm spirit for him, and of course for total success, as well.

We are gearing up for Elijah's ear surgery on Tuesday. I've been doing a good job of keeping it out of my head. I'll worry about that tomorrow. Isn't that a line from Gone With the Wind? :)

THANK YOU to all of you who have sent cards and letters and other fun things for the boys. They have been so thrilled about every single piece of mail they've gotten. I sincerely want to hug each one of you for the amount of comfort this barrage of mail has provided for ALL of us. Thank you thank you thank you! Maggie, your card was particularly moving and thoughtful.

I have to share with you this one special gift we received right before we left for vacation last week. A friend (Hi, Christine!) of a friend (Hi, Alise!) sent us some worry stones that she makes herself. (Check out her website to see more!) Some of the stones have Elijah's name on them. Some have fun drawings. And some have the word I have always used to describe Elijah in medical situations--STEADFAST. Whenever I need to turn off my fear and start focusing on positive thoughts, that is where I start. It holds a lot of meaning for me. Thank you, Christine! The boys have treated the stones like they are precious jewels. In fact, there is a batch of them in a glass jar in my refrigerator right now. I asked Elijah what was going on and he said, "Oh, PLEASE don't touch those! My stone soup is cooking." :)


One more piece of news and I'll sign off. Elijah lost his fourth tooth last night, literally 5 minutes after we had gotten home! The Tooth Fairy was very nice to him, and he looks adorable with his two top front teeth missing. That will be my next picture! Thanks for checking in..

Wednesday, April 10, 2013

Cardiology appt

Elijah had his 6-month cardiology check-up yesterday with Dr. G. It went great! His heart function is perfect and his pressures are low. I asked when his next heart cath might be and he said, "Not this year!" A year without a cath? We'll take it. We go back in six months and we will go from there. Thank you, God!

Today will be a busy day for us as we pack and prepare to fly to North Carolina very early tomorrow morning. We are all excited! The new snow on the ground makes us even more excited to get the heck out for a bit. :)

Thanks for checking in! I will certainly have photos to share post-trip!

Saturday, April 6, 2013

Sammy funnies and another missing tooth


Elijah lost his third tooth! We are pretty sure he yanked it out, as he did the other two. He sure loves his letters from the Tooth Fairy! :) He left her a letter under his pillow tonight that said, "Dear Tooth Fairy, I lost my third tooth. Get Ready. Love, Elijah" I'm sure she is "getting ready" as we speak.


This is going to be a quick update, but I want to type out some Sam super-funnies from lately.

I was chatting with Sam on the phone a few mornings ago on my way home and I said, "Sammy, are you having a good morning with Daddy?" He said, "No, I'm just pickin' my nose right now."


Sam got a bloody lip the other day in the bathroom. :( He's still such a cutie, isn't he though?


More funnies:

Dan was walking down the stairs, so Sammy turned to me and said, "Here comes the BIG GUY!"

His arm was asleep after a nap one afternoon this week. He kept describing it as being "farkly" (sparkly).

He is such a huge eye itcher. The other day after itching his eyes vigorously, he looked at me and said, "There. Now mine eyes are fresh."

That's all for now! Elijah has a cardiology appointment on Tuesday, so I will write a post after that.

Wednesday, April 3, 2013

We just got a letter! We just got a letter!

Thank you sooo very much to everyone who has sent a letter or card to our boys. Look at their loot! They get so excited every time there is something in the mail for them. And every single letter that mentions E's upcoming surgery helps him (I believe). He has received some pretty creative words and photos to help ease his anxiety about the scary mask. I'm impressed!


Wait, those look like scary masks!


That's right, they are masks. Our friend, who happens to be a "scary" doctor, and her husband sent the following book and accompanying masks to Elijah. This was super creative and thoughtful and just about made me cry. 







Tonight while the boys were taking a bath, Elijah said, "Oh! Mom! The masks! Z said to play with them in the tub, so will you get them?" It's a step! Maybe?


Although he still typically makes this face when the mask is in his hand.


Thank you for the love!

Tuesday, April 2, 2013

Easter 2013

How has it been a week since my last post? Last week was Elijah's spring break, so we took the boys on a few fun outings. We joined a gym (finally), so Elijah was able to enjoy the pool and play area (daycare, which is like kid heaven). Sammy did not have a single bit of interest in enjoying the pool or the play area, unfortunately, although we did put him in the play area one day. I returned to find him sitting by himself, nearly in tears, sucking his thumb. When he saw me he ran to me and burst into quiet tears. Every time we ask him if he wants to go anywhere at all, he says, "I want home!" Poor guy. I know that feeling! That was me when I was his age. We continue to encourage him to try new things while still being sensitive to his feelings.

Easter was busy and fun! Church was awesome. Elijah was able to "sing" in front of church with his friends (he actually had his head turned away the entire performance, as he looked at the giant screen). It was seriously cute, though. Here is a very brief video clip of one of his little friends, ushering him out of the church after their song was over. The little girls adore him!

video

This video is from part of the song the kids were singing and doing sign language to. You can barely see the top of E's head behind the little boy in the front. I LOVE this song and have not been able to stop singing it since Sunday.

video

Dan's sister Christine snapped this pic of us on Easter. Handsome boys! And don't forget Lamby!


This was the best photo of about 25 I took of the boys. As is the case most of the time with picture-taking, Elijah is in full cooperation mode and Sammy is in anti-cooperation mode. E preferred that his tie be on the outside of his vest. :)


Dan's grandma and eight of her (many) grandchildren. These are all of the boys' cousins on Dan's side. Cute bunch!


My boys, me and of course Lamby!


I had some boy funnies to share, but I can only think of one of them!

On the way to church on Sunday, Sammy said to Elijah, "Elijah, what was your favorite part of the morning?" Without hesitating, Elijah answered, "I like being handsome and awesome!" :)


I hope you all had a nice Easter, as well.