Goodbye to kindergarten and third grade!

Since my last post, the boys have said their good-byes to kindergarten and third grade. I cannot beLIEVE this year is done. What in the world just happened?! Look at how grown up my little Sammy looks now!

We are so thankful for so many things from this school year, which is probably why it seemed to go so fast. It was EASY, especially compared to the previous two years. Both boys had amazing teachers, made friends, made tons of memories, went on field trips and adventures of many kinds and learned a ton. I swear Sammy is destined to be a mathematical genius and I cannot believe some of the equations he conjures up and solves. Both boys made tons of progress in so many areas this school year. We are so proud of them!

Elijah got his catheter from last week's surgery removed on Monday. It was a piece of cake taking it out and once he realized how "free" he felt, the look on his face was priceless. "I can swim?" "I can climb at the park??"

We found a PCA who has started coming to our house and helping to keep Elijah on track this week. She is great! I greatly appreciate the help. I think the boys are adjusting to the "no-schedule schedule" that summer always brings. It is nice not having so much structure, but it is also bad for Elijah as he thrives on that.

This week and next, Elijah has appointments with SIX different specialists for check-ups. One of those appointments came up a bit unexpectedly after the surgeon last week brought up the possibility of Elijah's spinal cord possibly being re-tethered. He had a tethered cord repair when he was 2 and we've always known it was possible that it could become tethered again. When she asked if he has experienced headaches or leg pain, Dan and I froze a bit. Both of those symptoms have popped up intermittently over the past 6-9 months with no explanation. So next week we will bring him in for an MRI which will tell us if his cord has indeed retethered. If it has....ugh. That first recovery was a toughie. But on the other hand, it could be the reason that potty training has dragged on and could also be an explanation for the strange random leg and head pains.

We've had a handful of showings on our house, but no real interest yet. We're praying hard for a sell within a week or two! We'll see what's in store. In the meantime, we are trying to make the most of our early summer weeks. We are making lots of trips to different parks. Tomorrow we may venture over to the pool. The boys are very excited about that.

I'll end with Sammy's most recent math problem he presented me with. On the way to an appointment yesterday he said, "Mommy, what is 6,400 plus 6,400?" In my head I was thinking, Goodness, there's no way he could figure that one out. I asked what he thought the answer was and he said, "Let's see... 4+4 is 8 and 6+6 is 12, so... 12,800!" !!!! Seriously?

Thanks for checking in! Have a great rest of your week!!

Pulmonology and dev-ped check-ups

Yesterday Elijah had a check-up with his pulmonologist, who he still sees because of croup. We have always loved Dr. K. He is one of the best doctors we have ever gotten to know. I am constantly amazed at and so thankful for our incredible doctors. As always, Dr. K blew my socks off. He is incredibly smart, relatable and kind. He always makes us as parents feel valued, validated and respected. As I talked about E's croup in the past year, he kept saying, "Very interesting." When I finished talking, he explained what he found so interesting. First of all, it is "highly unusual" for an 8-year-old to get recurrent croup (of course!). He was intrigued that Sammy also gets it regularly and severely. Also, according to him, most parents never know when croup is coming and they live in constant fear. I almost always know when it's coming, and I give the boys oral steroids to prevent or lessen an episode. Dr. K was in agreement that giving meds preventatively is absolutely the right thing to do. As for E's croup, although he is perplexed, he feels we are doing everything we can at this point.

He asked about summer plans and I shared that the little boys and I will be road-tripping out east again this year. He thought that was just the coolest thing ever and promised that he would send me a few children's books on CD that his children once enjoyed. What doctor does that? He is the best!

I have to share another little tidbit about our visit.. I brought both boys to the appointment and as expected, they started to fight. Elijah tried to head butt Sammy and a few unsavory words came out of his mouth. Then Sammy was saying, "Mommy-Mommy-Mommy" repeatedly as I tried to talk to the doctor. Dr. K looked straight at Sammy and firmly said, "Excuse me!" then at Elijah and said, "Elijah, you need to chill a little bit, okay?" Both boys quieted. At first I was embarrassed and thought he must think I'm a horrible mother. After the appointment I realized he was trying to help me. He has children. He knows children. He saw me stressing while trying to focus, and he helped me out.

Today we visited with Dr. M, E's developmental ped...another top-notch doctor! Seriously, I cannot say enough good things about his team. Dr. M took tons of time with us. Learning from yesterday, I brought Sammy to daycare so I could FOCUS. Elijah did great! We did not have even a single issue during the entire appointment, which is a pretty rare thing these days. We discussed the past few months...how school ended on a mostly good note and how summer is beginning on a mostly sour note. He suggested another med to "take the edge off," but of course I'm hesitant to try it. Elijah is so sensitive to meds, but the prospect of that "edge" being rounded out a little bit is so enticing. Dan and I have some talking to do.

Dr. M is so good at building Elijah (and me!) up and making him feel proud of himself. He uncovered all of E's accomplishments in the past few months and made sure to give him huge props for everything. This is something I feel like I don't do enough. :( It is so easy to get caught up in the challenging times when we are in the trenches. Dr. M gave me a renewed perspective and I promised myself that I will DAILY tell Elijah how proud I am of him (Sammy, too). I am SO proud of my boys. Despite E's challenges, he is doing so incredibly well...and thriving! It is easy to forget about the hurdles he's jumped over to get to the point he is at now!

As I have been saying, the past few weeks have been challenging. I have been praying so hard for a breakthrough in ANY area. Last night at 3am, Elijah called me into his room, which is not unusual. What IS unusual is that he told me he had to go poop. So he did....IN THE TOILET. This is the first time he has ever done this in the middle of the night. He stayed clean for the entire rest of the night. Maybe our new "system" of taking toys away has been working?! We did a lot of talking about it today and I'm praying last night was a huge step in the right direction. I shared this accomplishment with Dr. M today and he was OVER THE MOON and hopeful about it.

I feel like we are doing EVERYTHING possible to help Elijah feel happier and more peaceful/rested. Please pray with us that we continue to make all of the right decisions!

That's all I have for tonight! Have a great evening!

Meeting in Room 103

I have said this a thousand times and I will say it again. We have been SO blessed with the doctors that have been placed in our lives to care for our precious boys. Dr. M traveled all the way to our southwestern suburb today to meet with Elijah's team at school. The meeting was AWESOME. Dr. M spoke as if he has known Elijah his whole life. The entire time, I found myself shaking my head yes...yep, that's our boy...yep, that's him....oh definitely yes, that explains Elijah..

He started by explaining that E has not just one or two strikes against him, but many strikes. The main ones being an extensive medical history, Nonverbal Learning Disorder and also being on the autism spectrum (some resulting strikes being sleep issues, anxiety and OCD). He explained the main aspects of NLD and how it is not a learning disorder but an information processing disorder. Also, how there are certain things that E's brain cannot do and will not ever be able to do, such as looking at a sheet of math problems and having the ability to prioritize the information and get through it without being totally overwhelmed. I could see things clicking with the teachers as Dr. M described how NLD kids react to school work and expectations and visual clutter.

Together, we addressed the main problem areas and even set a few plans in motion. Dr. M really stressed reinforcing SKILLS. For example, probably E's biggest "trouble spot" while in school is his inappropriate talking. Sometimes he blurts out noises and sometimes he says potty talk. Sometimes he calls people names for no reason at all. Since kids like Elijah think in steps and learn through a lot of verbal repetition, we came up with a plan to write out three concrete steps for him to follow when he starts to say an inappropriate word or noise. Dan and I are in the process of coming up with exact verbiage and then we will repeat, repeat, repeat those steps to him until he can stop the inappropriate sounds/talking before they happen. We will share our exact steps with the school so they can use the same words. Every time I talk to Dr. M, I gain some sort of new and valuable information. One of the things he said today that really helped me understand Elijah was that we (teachers/parents) need to keep repeating things to him until he understands....and that even though he might appear to understand and tells us he understands something, we will not truly know that he understands until we HEAR HIM REPEAT OUR OWN WORDS TO HIMSELF. Our scripts become his scripts. This is how he is going to get through school and life.

One of the things I've been saying for so long is that Elijah is confusing because at first glance, he appears to process information in a completely normal manner. He makes eye contact, he is engaging, he answers questions (mostly) appropriately and he smiles, laughs, interacts and even tells jokes. A person just meeting him could have a 2-minute conversation with him and have no idea the amount of processing that is taking place in his brain. So when you ask this engaging, smart little person to complete an abstract task like draw a picture and write a story to go along with it, you become confused when he absolutely cannot follow through. It can even be seen as complete defiance or manipulation.

Dr. M once again provided such good information. We feel very thankful for him and for E's teachers and team who were so willing to attend the meeting and who seemed so receptive (as they feverishly jotted notes in their notebooks) to understand more about Elijah and NLD in general.

I'll end on that thankful note. Next installment...the sassiest Sammy you'll ever meet. :)

Nurses are the ticket!

We have been waiting waiting waiting for doctors and educators to connect, all the while watching Elijah's exhaustion and resulting behaviors spiral out of control. His tics are back with a vengeance, along with major blurting out, defiance and lack of emotional control. Things are unraveling again. We sent him back to school for the past few days and he did better overall while he was there (thanks to his amazing teachers, who are seriously AWESOME and doing so much to help him), but once he gets home he has NOTHING left.

The doctor we have been waiting on is the one who gave Elijah his NLD (and ASD) diagnosis. This doctor is REALLY smart and really knowledgable specifically in the area of NLD, but I don't necessarily get a super warm/compassionate/empathetic vibe from him. As the week went on I was becoming impatient with his lack of response (and I've bugged him PLENTY), so I knew I had to seek out other options. As I've said many times in the past few weeks, we just cannot go on like this.

On my drive to work this morning, I had a major A-HA moment! I was thinking about how his awesome, caring, wonderful teacher is a woman...and a mother...so why does it seem like she is having a hard time understanding the gravity of this situation? Then I thought of E's neuropsych (the doc we've been waiting on) and how smart he is and how much he knows about Elijah's specific disability...so why does it seem like he is having a hard time understanding the gravity of the situation? OH! Teacher is a mother but NOT a medical professional. Doctor is a medical professional but NOT a mother. THAT'S IT! So then I had the idea that I need to connect with NURSES (who are possibly also mothers). More specifically, nurses who work with Elijah's doctors!

I called E's developmental ped (another Dr. M) and spoke with his nurse and gave her our story. She promised to talk to Dr. M ASAP and get back to me. Then I desperately called Dr. G's (E's cardiologist) nurse, even though we believe his exhaustion is not directly related to his heart. After one minute of talking, she GOT IT. "Oh Megan, this is terrible, and I can totally understand your frustration with school and doctors, too!" She promised to talk to Dr. G and "prep" him, as E has an appointment with him on Monday. I don't know that it's entirely appropriate for Dr. G to write a doctor's note shortening E's school days, but I want to know that he could be a back-up if necessary.

Less than an hour later I received a call back from Dr. M#2's nurse. She relayed what Dr. M had said...we need to eventually address some anxiety issues, but obviously Elijah needs to be able to get through a school day without his brain shutting down. THANK YOU! I answered a few questions that Dr. M had for me, and the nurse ended with: "I'll be in touch soon! If Dr. M writes a letter to shorten E's school days, can I send that to your home address?" YES, PLEASE! I took that as a very positive sign and literally, physically shook for the next hour out of nervous excitement. Could we actually get a doctor's note? That would be incredible and it would carry so much weight. We stand by our thoughts that Elijah's days NEED to be shortened or he will no longer be able to go to that school.

Elijah will be in school for one day next week (one day cardio appt and three days MEA), so we will be able to get him at least mostly back to baseline. Hopefully by the following week we will have a doctor's note in our hands! To be continued!

Goodness, this blog has been WAY too serious lately. We need to throw in some fun! I have pics and so many Sammy funnies to share. As always, thank you for taking the time to check in here!