Happy 10th Birthday, Elijah!

Today marks one decade since our oh-so-beautiful oldest son entered the world. I have spent today thinking back on that day. I remember the smell of the NICU, the way the skin on Elijah's neck felt sooo silky soft and how his small, confident smile told me that everything was going to be ok. I remember being afraid of the uncertainty, but falling head over heels in love and having hope for the future. I remember doing a lot of silent wondering about how his life would play out. We were told over and over that "We just don't know." His doctors didn't know how well his heart would work or how many surgeries he would need. They didn't know if he would grow well or talk well or walk well. There were so many things we could have become consumed with, but by the grace of God we didn't. We kept our eyes turned upward and we cared for Elijah the VERY best we knew how.

I was sitting next to my boy in the NICU when a sweet nurse shared something with me that I'll never forget. She said, "You know he's going to be great, right? These heart kiddos, the ones who have to go through so much, they stand apart." At the time I didn't know what that meant, but I cherished her words and made a point to remember them.

Ten. Years. Later. I cannot even believe what obstacles this boy has overcome and what an incredible little person he has become. Back then, in the days of the NICU, I never could have dreamed that in the following decade Elijah would:
Have 24 surgeries and be followed by 14 medical specialists.
Love Jesus, his little bro, chess, stuffed animals, movies, jokes, Pokemon, cheese, animals, water, skiing, horseback riding and anything that involves going really fast.
Crave adventure and meeting new people.
Have visited over 30 of the 50 states.
Have dreams of being a scientist and a baker and a dad when he grows up.
Look people directly in the eye when he speaks.
Be thriving in school.
Have a little brother that he loves to pieces.
Be such an incredibly smart boy.
Love singing and dancing to worship music.
Tell me, after a middle-of-the-night bloody nose incident, "See ya in the morning, Babe."
Be growing well, talking well and walking well.
Stand apart.

His first decade is an incredible story of love, faith, strength, courage and perseverance. Dan and I have said to each other since even before Elijah was born that he was going to teach us more than we could ever teach him and those words couldn't be more true. He has changed our worlds for the better in so many ways. I love this boy with all my heart and I cannot wait to see how the next decade unfolds!

HAPPY 10TH BIRTHDAY, ELIJAH DANIEL!

Happy SIXTH Birthday, Sammy!

Happy HAPPY 6th birthday to our sweet, sensitive, kind, thoughtful, organized, creative, deep-voiced, smart, FUNNY little Sammy. I cannot imagine our family without you. You are one LOVED little boy and it's hard to believe that six years have passed since that first time we heard you cry-growl. I love you so much, my Sammy Jammy!

I think it's safe to say that Sammy had a great birthday yesterday. We spoiled him rotten. He requested a strawberry cake with strawberry frosting and fresh strawberries on top. So guess what he got! The birthday boy gets what the birthday boy requests. :)

Almost every boy in Sammy's kindergarten class was able to attend the party. The gift opening was particularly interesting (MADNESS!). It made my mama heart happy to see him running around and happily playing with his classmates. They are such a close bunch. Their teacher loves Sammy so much that she even made an appearance!

Here's the kindergarten boy crew! Plus a few cousins and Elijah's bff. :) LOVE THIS PIC!

Sammy my Jammy. I ADORE you. I love when you request mama snuggles. I love that you intensely love your family and that you request "MMMMmmmm!!!!!! SNUGGLES!!!!!!!" often.

My four boys and I are in the midst of crazed packing, purging and planning. We will have some big news coming up in the next week or so.

Thank you so much for checking in! If it is on your heart, please pray for Elijah as he will be having surgery tomorrow morning. Pray for: no anxiety in the OR, a successful surgery (the first two have been Unsuccessful), minimal effects from anesthesia and a quick trip back home. Thank you!!!

On tattoos and turning 40

A few months ago I shared with Sarah (my amazing heart mama friend who hosted us in Kentucky) that I would be turning 40 this month. She asked if I would be interested in getting a tattoo with her while we were in KY to commemorate the big birthday. Um, YES! She had an awesome idea for hers, so I began pondering what I wanted to get.

I don't think it's any secret that I spend a lot of my time and energy worrying about our oldest boy. Since Elijah has been born, I have been given a handful of promises that I need to constantly remind myself about. I KNOW that everything is going to be ok.. Elijah assured me of that the day he was born, the first time I saw him, through unspoken words. I looked at him and I knew. His dark eyes told me, "It's going to be ok, Mama!" I have also been given this promise through a few dreams which I have cherished every day since I had them. He is going to be ok. We are going to be ok.

But I am human and sometimes I get caught up in fear and consumed with worry. I shake myself and say, "The promises! Remember the promises!" It is sooo hard sometimes. I have always had the thought that I should tuck a piece of paper with a few of my favorite Bible verses in my pocket every single day. At first I thought I would get Hebrews 11:1 as a tattoo, as this is one of my go-to faith verses. Then I had an idea.

I searched through my photos and found a picture I had taken of Elijah's heart monitor minutes into his recovery after open heart surgery #2 (the big one). I traced his heartbeat from the monitor and and added a cross at the end. It's my reminder of Elijah's strength and steadfastness, combined with my faith in the promises God has given to me/us that we are going to survive this journey! I chose to put it in a place where I can see it often, and only a few weeks after having it I can say that it has already helped me. I LOVE IT.

A few people have said to me, "But what about a Sammy tattoo?!" And I reply with, "God gave me a natural Sammy tattoo!" It's true! Sammy and I have strangely similar (and very unique) birthmarks and I love this so much. Mine is on the side of my knee and Sammy's is on the side of his elbow. As a kid, I hated my birthmark, but now I LOVE it. It's another little special connection I have with my awesome Sammy Jammy. (Sammy's is on the left and mine is on the right.)

My boys have given me a three-day birthday extravaganza, involving time with the little boys, time alone, time with just Dan and time with all of my boys. Every moment has been filled with tons of love. My boys are the best! Today the four of us went to Valleyfair and had such a fun time. I have loved the past few days and even though 40 seems a little bit scary, I'm ready to tackle it. The decade of forty is going to be AWESOME.

On Straterra (month 1)

Maybe it's all of the driving I've been doing. I have had lots of time to ponder and I've pondered a lot. I'm thinking I should drive around the Cities for an hour every day just so I force myself to take a break and think! I have a handful of topics I'd like to explore through writing. Somehow writing helps me sort things out.

First topic...Straterra for anxiety for Elijah (month 1)!

Straterra is typically an ADHD med, but can also be used to treat anxiety. Since we have tried a handful of "true" anxiety meds with no success, Dr. M thought this would be a good "family" to explore. I was hesitant because of E's history with having adverse reactions to meds. June was a rough month behaviorally...really rough at times. We were kind of at the end of our ropes and felt like we were becoming stretched again (almost to the point we were at this past winter) and we were doing everything humanly possible to make Elijah happy/rested/peaceful, but to no avail. None of us were sleeping and we were all feeling anxious and impatient, so we decided to give these new meds a try.

Within 24 hours of giving Elijah Straterra we noticed a significant change for the better. His behavior was WAY improved. He was handling stress better, wasn't as agitated with little things and was obeying without a fight when we asked him to complete tasks. After almost a week on 10 mg, things weren't AS good. Still better, but not as good as those first few days. I called Dr. M and he suggested upping the dose to 20 mg. This coincided with the dawn of our road trip, which worried me, but I did it anyway. After a few days on the new dose, Elijah was seeming more agitated and he was also complaining of arm/shoulder/muscle pains. I consulted with Dr. M again and he suggested going back down to 10 mg. Sometimes it takes kids a while to adjust, he said.

We went back down to the low dosage and really, ever since he has been MOSTLY even-keeled. We have our episodes for sure (and when they happen my head usually spins), but they are SO much less extreme and they happen WAY less often. It has to be the meds.

I believe that without the meds, this road trip would not have been as happy/successful. We visited the same exact people on last year's trip and all of them told me that Elijah was much much much different this year (for the better). 

Before Straterra, one night of poor sleep put Elijah (and therefore the rest of us) out for an entire week. He does still have poor nights of sleep, and the next day is still rough behaviorally. But now, he rebounds much more quickly. The day after a poor night of sleep stinks, but the next day he is back to his happy self. Yesterday was ROUGH on our ride home because he didn't sleep well the night before. He got a decent night of sleep last night, and today was...AWESOME! Aside from potty talk, I did not have to correct a single thing ALL. DAY. LONG. That is a miracle!

He has also been much more affectionate with me since starting these meds. He wants to be physically close to me a lot...hugging, snuggling, talking about how much we love each other, etc. This is how things used to be back when he was, ohhh, three! His desire to be close to me has strengthened our bond, which has sadly negatively affected my relationship with Sammy. He sees this new change and acts out. I'm hoping he will adjust and our bond will grow again.

On good days like today, Elijah's patience with Sammy is stellar. Before meds, when Sam upset him, he would either head butt him or scream at him...or both. Today after Sam yanked a toy out of his hands I heard E patiently say, "Do you want that toy? How long will you have it?" !!!

From what I've read, Straterra (just like any med) does different things for different people. Whatever this medication does to Elijah's brain seems to be very good. Side effects are minimal at this dose. We may eventually want to increase the dosage again, but for now things are good. I am so happy I stepped out into the scary unknown and gave it a try.

To be continued! Pray with us for continued GOODness! 

I have THREE more hours in my thirties! Tomorrow is a big one. I think I'll handle it well but for three more hours I will wonder about it possibly being tough. We'll see! Thanks for peeking in!

Desperate times...

What a weekend! We celebrated Sammy (again) this weekend, this time with extended family and friends. Sammy requested a COW theme for his party (I love this), and of course we complied. I love that he chose something a little bit off-the-wall. He was super excited to have a few friends attend this year. His daycare buds are the BEST!

These four cuties have been going to the same daycare since birth. The boys LOVE these girls! They are the sweetest little things and I'm so glad they have such a special bond with one another.

Birthday bro hugs. :)

The cow piñata got a beating.

And today we broke out our pool for the first time this year. The boys had a blast! Sammy is so much braver than ever before with water and trying new things. I'm proud of him!

In all honesty, it has been rough going for our family. Elijah is really struggling again, the boys have not been getting along and it seems like there is often some sort of turmoil in our home. Potty issues have regressed hugely, which has all affected sleep and sanity. I know that better times are in store, but until then we are spent.

This will be another crazy week, including three doctor's appointments, three therapy appointments and swim lessons. I think I just need to accept the fact that life will always be nuts!

Elijah started seeing a child psychologist on Friday and I will take him to see her weekly for the next few months. She is AWESOME! Our hope is that she can help him learn some coping techniques that will lessen anxiety and frustration.

You can see from these photos that we had a few moments of summer-time peace today, thanks to Dan and his bubble-making.

Dan and I have had to get extreme recently. Behavior, potty and sass have been OUT of control, so we have taken away ALL technology until we see an improvement in behavior and sass. And every time there is a potty accident, we take a toy away from E. To earn one toy back he needs to use the toilet successfully all on his own. We are going to keep with this until we see improvement!

Early to bed tonight. Thanks for peeking in! Have a wonderful week!

Sammy-Jammy's FIFTH birthday!

Five years ago I was in a hospital room snuggling with the cutest, sweetest newborn. I fell in love with him the second I met him. I remember not wanting to put him down...to the extent where Dan would pry him from my arms so that I would get some sleep! Sammy has always felt like the most perfect addition to our family. I can't imagine my life without his snuggles and constant stream of hilarious antics. Happy fifth birthday, my PRECIOUS youngest boy! I love you to pieces!

I can't help but spoil my boys rotten on their birthdays. I do. Today was no exception.

I stayed home from work to spend the day with my cutie pie! The two of us went to the Mall of America and rode a couple rides, followed by lunch, visiting Dan at work, quiet time at home, making cupcakes, opening presents, family dinner at Applebee's (always his favorite!) and dessert at home. Whew! What a day!

Isn't that the BEST, happiest birthday face?

At dinner tonight Sammy doused me with "colossal hugs" (as he calls them), smooches and snuggles. He kept saying, "I will never EVER leave you! I love you soooo much! I'm going to snuggle you FOREVER!" And in standard Sammy fashion, he finished by saying, "But...I'm leaving for Russia tomorrow."

I have to share another funny from today. I said to him, "SAMMY! How do you feel about being FIVE years old?!" He said (without skipping a beat), "I am powerful and impressed with male pattern baldness!" Wha..?! I had no idea that "male pattern baldness" was a part of his vocabulary!

Today was Elijah's last day of second grade! There are a lot of emotions wrapped up in that (for me). Dan leaves for DC on Saturday and the next few days are PACKED with fun adventures for the little boys and me. It is officially summer break, which is such a strange feeling. Yay and yikes!

Have a great rest of your week and thank you for checking in!

Climbing the mountain....slowly..

Today was a day of overwhelmedness for this mama. I'm heading out of town tomorrow..SOLO..so wrapping up a hundred loose ends has been a little bit stressful. It'll be worth it 24 hours from now! I'll report more about my trip after I get back. It is going to be a hugely momentous and awesome adventure! Something I will certainly never forget.

First, birthday party pics!

Isn't this so like Sammy to be a unique part of the picture? :)

I have a few things I wanted to write down before I leave town. The most exciting news is that I took Elijah in for his ENT follow-up today. Dr. L wanted to see how his hearing compared to six months ago and after his most recent ear surgery in July. His hearing test today revealed that the hearing in his left ear is even BETTER than it was six months ago! His left ear is now officially completely within the normal range. Amazing! Dr. L was literally stammering over his words. I don't think he said one entire complete sentence. What I heard: "This is...just...unbelievable. I am...stunned. Un. Believable. See you in six months." The outcome of this whole ear ordeal has been a HUGE answer to prayer. I will never ever forget the miracles that have happened to Elijah in this area.

A funny thing from the appointment today.. While he was getting his hearing test, the audiologist directed some white noise into his right ear while testing his left. Elijah stopped her and said, "Um, excuse me, but are you giving me challenging wind?" That's my boy!

Overall, we have been seeing gradual improvements with our oldest boy recently. He has been so much better about telling us details about his day (good or bad) and about expressing his feelings. He also can occasionally catch himself when he is doing something undesirable and he can express sincere apology more than ever before. A lot of the things that "they" tell us Elijah will never be able to do...he is starting to do. At 6:00 pm, when Dan walks in the door, he will remember that at 7:00 am Dan had a sore throat and he'll say, "Daddy, how are you feeling? How is your throat? I hope you are feeling better!" In Elijah-land, these things are a pretty huge deal.

Sleep recently has mostly been average to good. We have had very few "bad" nights recently, although Dan and I are still waking up early because we've been trained to do so. :) The end of daylight savings has been a blessing because we haven't had to change Elijah's internal clock, yet he's going to bed later and waking up later!

I think I forgot to mention Elijah's recent well visit with Dr. Judy. Everything looked fine, but she was surprised and disappointed that the ASD label had been thrown on him. She has never believed that it's a suitable label for him. I agree, but if it is helping him get the assistance he needs in school then I'm not against it. School has been going much better since he has been receiving more one-on-one support. We love his teachers. They work really hard to keep him happy and productive. I still don't feel like he is completely understood, but he is a tough one to understand!

I think I've covered what I've wanted for the week. You won't hear from me again until at least Sunday. Have a great weekend!

Happy 8th birthday, Elijah Daniel!

Today was a strange, happy, tearful day. Little bouts of crying surprised me a handful of times when I would think about Elijah turning eight. On one hand, I feel like the past eight years have lasted 20 years. On the other hand, I can't believe our oldest boy is EIGHT!

This boy. His beautiful, smart, funny little self has transformed me into a kinder, more faithful and patient person. He has added a great deal of color, richness and depth to our family. Dan, Sammy and I love him to pieces. We would not be the same without him!

Happy 8th birthday, Elijah Daniel! You are a LOVED little person! I can't wait to experience many many MANY more years with you.

Dirty toes

My birthday was awesome yesterday! My boys treated me to an incredible day. I woke up to a homemade breakfast sandwich (sooo yummy...Dan makes the BEST) while Sammy and Elijah made me food in their play kitchen. Elijah made me a Salt & Pepper Cake and Sammy made me Vegetable-Fruit Soup. Both were delicious! :) After I ate their food, Elijah "cleaned" up their kitchen and was pretty proud of himself for doing so.

Before I opened my gifts, Sammy said, "Here Mom! Open your new purple water bottle!" He couldn't understand why he shouldn't have said that. It was cute. And I loved the water bottle. I will forever have the image etched in my mind of both boys standing excitedly in front of me, literally jumping and bouncing around with enormous smiles and flapping arms because they were so excited to give me the gifts that they had picked out. I have the best boys! They gave me 39 spanks and then Sammy said to me, "Mom....I love your dirty toes." Oh my goodness, that boy. He is so funny. Dan and I got away for a quick dinner last night and that was delicious. It was a great 39th birthday!

We had such a fun morning today! We spent the morning with our friends Jen (E's awesome kindergarten teacher turned friend) and Allison (her adorable baby girl). We went to the music class that they attend every week and it was so much fun! Aside from a 15-second bit of "trouble" Elijah gave me, the boys did awesome and had such a fun time. Both boys loved the musical triangles and I noticed that Elijah was clanging his mini cymbals together with impeccable rhythm. I remembered from one of my NLD books that NLD kids typically are musically inclined especially in the realm of drums or instruments that require rhythm. Hmmm, something to keep in the back of my head. We played at Jen and Allison's house for a bit afterward and the boys had so much fun!

I feel so grateful for the ideas that have been sent our way regarding Elijah and some of things he has been struggling with. Thank you so much! My soon-to-be sis-in-law (right, Joel?) is going to school to become a child behavioral analyst, so she sent me tons of valuable thoughts and ideas. One of the things she mentioned that I thought was brilliant was to make our white board schedule portable so we can bring it to the dropzone. Why didn't I think of this? Above is our end-of-week and weekend schedule with the dz part being portable. Sometimes it seems like Elijah doesn't pay much attention to these schedules, but if I ask him a specific question about our day he knows the answer without having to look. He obviously relies on them for structure and predictability.

Last week I contacted Fraser (special needs organization) and Autism Society of MN and got E's name on their lists so we can get him evaluated for services. I'd love for him to be able to receive social skills help and emotional/behavioral help. I'm excited to see what comes from that. Depending on how they pan out, Courage Kenny is next on my list. I've been reading parts of E's neuropsych report every day to try to absorb the info from that. I'm feeling a bit desperate to get a few of our recent struggles under control before second grade starts.

Today was a mostly GREAT day, so I'd like to copy and paste paste paste.

This weekend: work, dropzone, church and family time. I'm so grateful for my amazing boys and for YOU for reading and caring about us. Have a wonderful weekend!

Our baby's 4th birthday!

I think it's safe to assume that Sammy had a great golden birthday! We began the day with Straw-Blue-Nkle-Berry Pancakes! 

Because of our (quickly) approaching road trip, I had some errands to run and work to take care of today. Dan and Sammy spent most of the day together. After his nap, the two of us sat at the kitchen table and frosted his birthday cupcakes! He requested rainbow cupcakes with green frosting and sprinkles.

As usual, we wrote out a number with the cupcakes. "Mommy! If you sit on the other side, it's a lowercase H!"

He was SO excited about the card we gave him. He loves singing cards, so this year he got a singing cupcake!

When Dan and Elijah got home from PT/OT, we sang "Happy Birthday" to Sammy and he blew out his number 4 candle for the second time in just a few days!

Then, presents!

He had gotten a bunch of bubbles from family members at his party on Sunday, but spilled ALL of them within a few hours. He was horribly upset about it. I sneaked a few bottles of bubbles into his pile and he loved them! The happy face says it all.

The ONE thing Sammy asked for this year was....a baby chick stuffed animal. ?? I'm not sure where this came from, but I found a cute one for him and he snuggled that thing like crazy! "Awww, sooo cute! He likes to snuggle me! He's SO CUTE, Mommy!"

As usual, Elijah shoots me a perfect smile with eye contact when I say, "Look here and SMILE, boys!" and Sam looks down with his silly, adorable grin. I love my boys!

Our "big" gift to Sammy was a talking Stuart Minion. Both boys were super excited about welcoming him into our family.

Tonight we did our standard Applebee's birthday dinner. Dan and I were just talking about how we're going to keep the boys believing that Applebee's is a super special place, and for as long as we possibly can! Sammy had a fun time at dinner, being sung to and being loved upon. I think he had a great golden birthday!

Our family would not be complete without our beautiful, handsome, FUNNY, silly, smart, growly-voiced, sassy Sammy! He has such a "sweet & sassy" little personality and I feel SO blessed to be his mama!

Car update: My awesome cousin Trevor worked on Big Red for most of the day and delivered her back to us with a new hood! He still has some tweaks to deal with, so we'll get those taken care of in the next day or so. And it doesn't bother me one bit that the hood of our red car is now black. It gets us where we need to go!

Tomorrow: Dan may be skydiving. I have a hundred more errands to run, things to accomplish and items to pack. Sammy will go to daycare after his well visit in the morning. Elijah has his LAST day of first grade (soooo happy to end this school year!). Side note...he has had two "great" days in a row this week! Tomorrow night I'll pick up our rental car and load up for our big trip. We depart Friday morning at 7:00a!

Thanks for checking in! I'm going to kick my heels up for a bit before bed. THANK YOU to those of you who sent Sammy something special in the mail! He LOVED being the center of attention this week and today.