Sunday, September 27, 2015

After the 23rd surgery

Two quick funnies from Friday that I forgot to write in my last post! At one point before surgery, a nurse asked Elijah if his wristband info was accurate. She said, "Are you Elijah Daniel Porta?" He said yes and she asked, "Who are these two people with you today?" Elijah said, "That's my mom and that's the guy with the gigantic beard." :) Then after surgery the anesthesiologist came in to discuss how things went (this doctor was AMAZING, as all of them are at Children's). He said that E did great and then started laughing so sincerely. He said that Elijah was so polite as they were sedating him, saying things like, "No thank you, I really don't like that icky mask. Please take it away." That's our boy!

Elijah has bounced back from surgery like a total champ. I can hardly believe it! Literally the morning after surgery he was chipper and helpful and happy and rested. He was bouncing all through the house and eating through our fridge like caterpillars eat through milkweed. He was hardly in any pain this time, which was a huge difference from last time. This made me think about something. How often do we say a specific prayer a million times only to have it answered...and not give thanks?!

ALL of my very specific prayers were answered for this surgery. I prayed for a miraculous calm to take hold of Elijah in the OR. This was surgery #23 for him and all of the previous 22 surgeries have brought severe anxiety when the mask was put onto his face in the OR. I'm talking, multiple people having to hold him down because of body flailing and total anxiety/panic. :( According to Dan (because I have only gone in once and swore I'd never do it again), this time was a breeze compared to the last 22. That was an answer to prayer! My other main prayer this surgery was for Elijah to experience minimal pain afterward because last time was pretty bad for 2-3 days. He has had such minimal pain this time. Another answer to prayer. This time I have followed up with much thanks. It's so easy to overlook that part when your prayers have been answered, isn't it?

We are having some specific issues with behavior which pertains mostly to Elijah acting out aggressively toward Sammy. We have a plan in place for that and we're sticking with it, even if takes months for him to stop these behaviors. Consistency works best for him. Other than these issues, behavior has been overall so good for the most part. I remember just a few months ago barely making it through every day. The late afternoon hours were so rough that I wanted to run screaming from my house by 5:00pm. It's not like that anymore, even when homework and therapy is thrown in.

Elijah has been using the toilet on his own lately and I've been afraid to mention that to anyone in fear that he will regress again. I realized today that I have also been able to work on "other" things that even a few months ago wouldn't have been possible. He now gets into the car all by himself and puts on his own seatbelt. Even as recently as July, this did not happen. He also will put his shoes away when he gets home and put them on without complaint when it's time to go somewhere. Prior to July, I mostly did tasks like these for him. If I ask him to do a favor for me around the house, he'll (usually) do it happily. He now brings his plate to the counter without being asked after every meal. All of these things would have been tasks I wouldn't have even attempted three months ago, as we were all just doing our best to survive! I attribute most of this to his anxiety meds. They are another answer to prayer and I am grateful for them!

As always, I had a rough couple days after Elijah's surgery. It always hits me hard, even when it's a minor ordeal. I walked around in a stupor for most of the weekend and got nothing accomplished. Here's to a great week! Thanks for peeking in!

Friday, September 25, 2015

Successful surgery!

Surgery went great! It was successful and actually quite painless. Elijah was SO brave about the two things he is typically anxious about: the mask and the tape. We talked to him a lot about the mask beforehand and let him choose between needle (IV) or mask. He agreed that the mask was the best option of the two. Dan went back to the OR with him and said that he had the best going-to-sleep experience yet. Normally he fights it and needs to be held down, but was much calmer this time. He also usually becomes very upset when we take the tape off his arm that is holding his IV in place. Apparently some genius invented a painless tape (WHY wasn't this invented 10 years ago?), so Elijah didn't flinch a bit when the tape came off!

Despite all of that good news, he actually was quite anxious before surgery this morning. MUCH more anxious than he ever has been before. He expressed worry so many times. He even said things like, "THEY'RE GONNA KILL ME!" and "I'M NEVER GONNA LEAVE THIS PLACE!" We did a lot of distracting with toys and playing and a service dog even stopped into snuggle with him.

Starting to get a little loopy from the Versed.. :)

Immediately upon waking up, Elijah lifted up his left arm and saw that an IV had been placed after he was sedated. He loudly said, "WHAT?!?!?!?!" We all laughed. He sure was disappointed to see that thing in his arm!

After surgery he was NOT feeling well at all. He kept feeling like he was going to throw up and was just seeming uncomfortable. Dan left to get Sammy off the bus and Elijah immediately fell asleep and HARD. If he wouldn't have been hooked up to the monitor I would have worried that he wasn't breathing. That boy slept harder than I think I've ever seen him sleep. An hour and a half later I woke him up so we could go home. He literally could barely talk or walk! I pushed him in a wheelchair to the bathroom and he was able to go without screaming (unlike last time). Yay!

We had a short evening together at home and then Elijah ASKED for bed. He started crawling into bed without his pajamas and actually got mad because bedtime was taking tooooo looooonnggggg! He had some more nausea before bed, but totally crashed again and has been sleeping like a rock.

We have some daily obligations to perform for the next six months to ensure this surgery is a complete success. Please pray for that, as I don't know it is going to be a super comfortable thing for our boy. Hopefully it won't be too big of a deal.

I missed Sammy extra today! I told him that and he asked me to come sit on the blue chair with him. As I snuggled him tightly, he said, "Mommy? You know why I asked you to snuggle? Because I heard you say that you missed me and I wanted to make you feel good." I love that boy. I love both of my boys! Super proud of both of those cuties!

I am tired and I apologize, but I'm not going to re-read through the post and make corrections tonight! Dan is leaving for a work trip in the morning, so relaxation calls! Thanks for the prayers and we would so appreciate continued prayers for minimal pain and for this ordeal to be successful. Thank you!

Surgery today and a few funnies!

I promised corn maze pics, but that'll have to wait! I meant to write a post last night, but slipped away. Elijah's urologist feels comfortable going forward with surgery today even though he is being treated for a UTI. Sammy is off to school and we are just chillin' and mentally preparing for a trip to the hospital. It should be in and out with only a few hours spent there, assuming everything goes as planned. Prayers are appreciated!

We have had a good week! Yesterday brought some behavior that we hadn't seen in a while (home and school both), but I'm attributing it to surgery nerves, the UTI meds (his body NEVER does well with these) and having a substitute para at school.

I have a few funnies to share that I've written down recently. Forgive me if I repeat any of these. There can never be too many funnies, right?

Sammy: Elijah, I want you to plummet!
Me: Sammy! Do you know what the word "plummet" means?
S: Yep! To fall fast!
(this boy is smart!)

As I was coming toward Elijah to hug him, he yelled, "Aaaghhhhhh! A lady who wants to kiss me!"

Waking up one morning, Sammy said, "Ohhhh it feels so ouch in the morning."

I walked down the stairs and heard Elijah say, "There's the little lady carrying a box of snuggles!"

Sammy heard music playing somewhere and asked, "Is George Washington making that music?"

Elijah: Mommy, you are a REALLY good cook. Except...I don't like most of the food you make. But your desserts are good! Yeah, you make REALLY good desserts. Fantastic desserts.

Elijah (after walking a lot through the corn maze): MOM! Me feet are bloply and tired!
Me: What does "bloply" mean?

After coming out of the bathroom, Sammy announced to us, "Ladies and Gentlemen! I.....HAVE ARRIVED!"

Sammy's super sweet bedtime prayer that is so perfect: Dear Jesus, thank you for this day. Thank you for Sammy, Elijah, Mommy and Daddy. Thank you for breakfast, lunch and dinner. Thank you for LIFE. Amen.

Me: Ugh, my eyes hurt.
E: Why?!
Me: Oh, because I'm a tired mama!
E: I...I really don't have a response for that, interesting red-eyed woman.

The other night Elijah picked up one of my tank tops from a pile of laundry and asked, "Mom, is this one of your boobie packs?"

Saturday, September 19, 2015

Second week of school...success!

The second week of school is done! Both boys have been doing great. Sammy has been dutifully picking up litter in his classroom, just as he does everywhere we go. :) Elijah has been continuing to show maturity this week, which is in my opinion in HUGE part to meds. Being used to the way things were last year, I find that I brace myself in certain situations only to find that I can relax. Example: homework! He and I have sat down three times together so far this school year and completed BIG math sheets with at most one mild complaint. Last year there would have been 50 complaints and he would have scribbled over and eventually crumpled up the paper. As was the case during the summer, his threshold seems to be so much bigger. He can handle a full day of school and therapy and homework and not be totally overwhelmed. PRAYING this continues!

I took E to see Dr. M (developmental ped) this week and he was happy to hear how Elijah was responding to the meds. He told me that just observing him in the office he seemed calmer and less distracted. We are going to try a VERY tiny dosage increase in a few weeks. We are also continuing with talk/skills therapy and Dr. M was on board with everything we are doing. We are also having someone come to our home on Monday to do an assessment for in-home skills/behavioral therapy. I'm feeling super hopeful about this because so much of what Elijah needs assistance with occurs in our home and typically in the late afternoon/evening. In addition to being his LUCKY mom, I am also his behavioral/social skills coach and it would be SO helpful to get some help with this!

And of course that's not all! :) Elijah's urethral surgery is scheduled for next Friday, but Dr. R asked that we have pre-op done a week in advance in order to get results from his urinalysis in time. Today I got a call from his primary doctor with the news that Elijah's preliminary cultures showed that he has a UTI! Today we started him on a 10-day course of antibiotics and that likely will push surgery back by a bit (we'll know for sure on Monday).

It's always something, but I want to say that the constant "action" in our lives does not bring us down. Aside from HATING the pain and anxiety Elijah has to constantly endure, we do remember that THIS IS OUR JOURNEY (not just Elijah's, but OURS..we're always right there with him). It's useless to fight what God has in store for us. If we did, we'd be miserable!

I was able to spend a bit of time in Sammy's classroom this week and it was so much fun to see him in that setting. He is thriving and growing and doing so well. I am so proud of my sweet boy! He has been a bit more tired than usual, but he has eagerly gotten onto the bus every morning and hasn't complained about a thing. He adores his sweet teacher (she is the BEST!) and talks kindly about his new friends. He literally has not said a single negative thing about school.

Today we made our yearly trip to the corn maze as a family and we had so much fun! It was our warmest year to date. I of course have tons of photos to share. Next post! Thanks for reading!

Friday, September 11, 2015

First week of school done and a surgery on the horizon

We all survived the first week of school, phew! I shed far too many tears this week. My days felt empty without Sammy by my side, holding my hand everywhere I went. But I knew he was safe at school with the BEST teacher and having a great time and that put a smile on my face. Elijah had a great week at school, too! He had some blurt-outs, but as far as I've heard nothing worse than that went down. In fact, some really amazing things transpired with him. Things I NEVER thought would happen on this first week of school. During the first two days of school he completed two math sheets (one of them with 56 problems on a page!) WITHOUT COMPLAINT. Uhh...wha?! Last year when a math sheet even touched his desk it immediately got crumpled and thrown across the room. I was so darn proud that I gave him a bit of incentive (uh, bribery) to continue with this. I offered an Inside Out stuffed animal on Friday after school if he could complete one math sheet per day without complaint. He did it!

Sammy has really done SO well this week. I give that boy major props for holding his stuff together so well. He hopped onto the bus happily every day and he hopped off happily every afternoon. He eagerly told me details about his day and seemed genuinely excited about going back again. This morning when we were getting ready for breakfast, I could see that Sammy was on the verge of losing it. I think the craziness of the week had finally gotten to him. He sat on the floor of our kitchen, staring at our pantry and literally SOBBING because I told him he could not eat fruit snacks for breakfast. He would not budge from that spot and continued to cry. Finally I grabbed him and hugged him tight and rubbed his back and told him that I understood. School is tiring! It's been a week filled with change! And I told him I was very proud of him. After a few minutes he completely switched gears, got dressed, ate breakfast and was ready to hop on the bus again! By the way, Sammy got an Inside Out stuffed animal, too. :)

There was another major success with Elijah this week at school. There is a kid in his class who was a major antagonist in his first grade class. This kid...ugh. He preys on Elijah's weaknesses and vulnerabilities and instigates trouble. He knows that Elijah is prone to doing things like blurting out potty words or screaming when frustrated, so he will approach him and say, "Elijah, say a potty word as loud as you can!" In first grade, Elijah always did what he said and of course ended up getting into trouble. This year, after seeing this boy's name on a locker at open house, I began coaching Elijah and  doing some role playing. On day #2, Elijah got off the bus and proudly told me that this boy had urged him to "scream as loud as you can!" E told him, "NO!" and turned the other way. This is hugely hugely awesome.

We have had some medical developments this week, as well. Elijah had two routine specialist appointments, one with urology and the other with ENT. We have known that the urology surgery from last November hasn't worked, but we did not expect to alarm the doctor quite so much. Another surgery is necessary and SOON! He wanted to do surgery as early as Monday! I choked and began coughing and asked if we could maybe wait till the following week. So Elijah will have a urethral dilation on September 25th. The surgery itself is not major or worrisome, but what we have to do at home with him every day afterward for SIX MONTHS is worrisome. Let's just say major painful things in that region. :(

Today Elijah got a hearing test and we chatted with Dr. L. His hearing is the same as it was 6 months ago...mild hearing loss in left ear with a spike into normal hearing in higher decibels. YAY! And an improvement even from last time...his ear drum now moves when air is blown into the ear (before it wouldn't budge). Dr. L said AGAIN that he never ever ever ever would have anticipated this outcome for Elijah. In standard fashion, he referred to E as an "evil genius" and walked away scratching his head. In a good way!

I'm super excited about tomorrow because we will be getting together with two new friends (one in the am and one in the pm) who we have recently met. We are excited about the opportunity for new friendships and connections!

Phew, here's to another FULL week almost done. Looking forward to what next week has in store!

Tuesday, September 8, 2015

Hello to third grade and kindergarten!

I figured out today that this is Elijah's seventh year of school. That is crazy! I remember putting him on a bus on his third birthday and feeling like my limbs had all just been chopped off as it drove away from me. He was sooo little, could barely say his name and was totally dependent on other people. Now he seems like such a big boy and so seasoned when it comes to school. The boy I worried most about today was my little Sammy. Time moved soooo slowly today. I could hardly stand being apart from him and wanted him here with me so badly.

But I just knew he was enjoying his day. I could feel it in my heart and was so happy about that thought. His teacher sent me an email toward the end of the day saying what a great day he had. Yay!

According to Elijah, he felt he had a great day, as well!

Super LOVE this pic...

I NEVER thought it would be so difficult to put my sweet little kindergartener and his bro onto a BIG bus and trust other people to take care of them outside of the school building. Before we left home today, I talked to the boys about the kissing hand and laid a big smooch into the palms of their hands. I told them that if they ever felt sad or lonely throughout the day, to place their smooched-on hands to their cheeks. Then..while at the bus stop, Sammy reached for my hand and kissed it. "Mommy? This is MY kissing hand smooch. If YOU feel lonely today, put your hand to your cheek." Such a sweet, thoughtful boy.

Elijah has a few medical appointments this week, but otherwise not much else is going on. Thanks for peeking in on our cuties! xo

Saturday, September 5, 2015

State Fair 2015 and preparing for a new school year!

Another full week has passed! It was fun having my mom here for a few days. The boys were ALL over her and I think they made her head spin a bit. :) We said goodbye on Wednesday as she hopped on a plane to go back to Palm Springs. Dan got back from a long work trip and we made it to open house to visit both boys' new classrooms. Sammy is finally excited for school. He was so cutely excited to have a locker that has his name on it and to check out his new classroom. I think he is going to have a super fun year. Elijah's teacher seems AWESOME and we feel like she will be a great fit for him. Dan and I sat down with her this week for a few minutes and gave her the insight that we thought would be helpful before jumping into the year.

Meds update: We have been going up and down and up and down with dosage because neither 10mg or 20mg has seemed right for E. This week I decided just to deconstruct the capsules and give him what would be around 15mg every morning. We had some SUPER rough days this week, but I feel in my gut like we need to stick with this dose for at least a week before making changes. Just about every 2 seconds I whisper a prayer to myself that we will find the magic dose before school begins. Please, God.

We squeezed in a trip to the Minnesota State Fair this week and we hit all of our favorite food stands and rides. As always, the day went super fast. We love our yearly family State Fair day!

Sammy posing like the "Statue of Liverty" with a cold glass of milk. :)

He was so excited to pet a cow ("Cowwy's family!").

Traditional oink booth crown photo.

Love these two oink booth cuties.

You'd never know that 2 seconds before this photo was taken Elijah was head-butting his brother. Ugh. That switch can go on and off in the blink of an eye.

Posing with their loot!

Wishing you all a fun and safe Labor Day weekend! Thanks for peeking in!