It was inevitable. We all have the worst vision.. every last one of us! Owen has been going to the Ophthalmologist since he was a toddler. His eyes always looked great and just last week we went for his yearly exam. "You just made my day! FINALLY I get to wear glasses!!" He is seriously so thrilled to wear glasses like the rest of the Simmons family. It was only coincidence that his prescription was exactly the same as Kam's in 2nd grade. Only four years and he will be in contacts, if he chooses.
Picking out glasses was so fun. He knew he wanted color on the sides so he picked these super cute Nike frames and we paid a small fortune for the ones he really wanted. He wears them all the time and only gets headaches from time to time from the new script. He can see so much better.. "it's like I can see in 3d.. it's like everything is SO REAL!"
He wears them all day and has a cute little camo case that he puts them in at night. He cleans them and takes such good care of them already. I'm sure the newness will wear off and we will be glad we bought insurance on them. I can only see him leaving them on his nightstand at just the right height for a littler brother to come by and smash. I didn't think this boy could get any cuter... but he just did!
I know everyone is wondering how Owen is doing. It has been nearly 3 weeks of this darn tummy ache and I still am not sure we know totally what it is. After visits to Cardio, GI, Labs, ER and multiple abdominal xrays... I think the culprit may just be a tummy virus and poop. So I will save you the details on his poop, I am certain Owen would thank me on this one, but let's just say that he is always very regular. Nothing has changed in that department, but for some reason his xray show he is still all clogged up. So we have been doing lots of miralax and fluids.
I am not convinced that all the tummy pain is related to this, but it certainly is a theory. I think he must have had a tummy bug leading up to this because he was in so much pain he wouldn't leave the sofa and hadn't eaten 8 days straight. His tummy feels better when it's empty and he feels crummy when it's full. Another theory is that the Cellcept (one of his anti rejection meds) is wreaking havoc, but we have to rule out one thing at a time. So for now.. we focus on cleaning the boy out.
The good news is that he is eating again. Owen was 43lbs at the start of this and as of last week was just below 39lbs. He is back up to 40 and we will just watch the scale s-l-o-w-l-y creep back up. I have been utilizing his gtube all day long and I am so grateful he has that access. I can't wait for the day that we ditch that feeding tube, but it is a lifesaver at times. I utilized the feeding pump for a night drip of feeds a few nights and will continue to use that on days I cannot get enough calories into him. Mr Owen needs to pack on at least 10 - 15lbs.
Since Owen has been missing school due to all this drama.. he has been busy keeping up on all his assignments at home. I may bribe him with legos from time to time. He has quite the stash of Legos and will spend hours in his room coming up with "creations". I'll have to take some photos of them.. they are pretty amazing. He keeps asking me when he can set up a YouTube channel.. I think it would be so fun to have all the videos of him creating and talking about random things. I told him soon...
We haven't been swimming much this summer. We are still working on building back some of the stamina lost in the hospital. He is just so deconditioned so he can't swim for long. We like to go early morning on the weekends as a fam before it gets too hot out.
My little "skeletor" who is going to fatten up before the holidays. He could seriously go all day without eating anything besides peanuts, pretzels and water. He loves all his scars and can tell you the story behind each one. Such an incredible boy!
Speaking of incredible... we decided to head back to Physical Therapy today and see how things go. I didn't know if he'd make it the entire hour, but thought we should at least let him self limit. It's time for the insurance to ask for a review from his Physical Therapist so we tested him a little. His gait has gotten so much better when he runs, but he still has a ways to go.
He couldn't quite hop on his own, but did okay with assistance. He will get there.
His jumping has improved quite a bit. He jumped 19" total! Woo hoo!
It's going to take a long time to get to where we would like him to be. I don't ever forsee him graduating out of physical therapy. It's okay though. He loves his PT and he loves to go to the gym. Mr Logi doesn't think it's too bad either. He was crawling all over this mat and exploring.
Back to school tomorrow (hopefully) and we are on our way to recovery! We are all looking forward to fall and cooler temps. Owen has been saving all his Halloween costumes online for me in a shopping cart. He keeps asking me why I won't buy his costume yet... "I promise I won't change my mind." 24 hours later... "Hey mom.. did you see this cool costume.. I changed my mind. This time it's for real!"
Logan is 8 months this week. Now that he mastered how to crawl around, nothing is slowing him down! He is such a busy baby, always on the move and exploring. He crawls all around the house, pulls himself up to stand, and even mastered climbing the stairs 100 times a day. Once in a while he gets really brave and tries to let go and walk. Let's just say he is keeping us on our toes!
Logan is our biggest baby and is already in 18 month clothes! He is super tall (we should probably go to one of our well baby visits here soon and catch up on vaccinations) but I have no idea how tall. I just know that I can barely snap his 18 month onsies over his torso. He is tipping the scale at 22lbs and is one of the strongest little guys ever.
I have a pretty good sleeper on my hands. He is consistent, if nothing else. He wakes at 5:30-6:00 each morning. Takes a morning nap around 9:30 for an hour, always sleeping ON his mama. I am not going to say I don't enjoy this snuggle time. His afternoon nap is always after lunch until I wake him up to pick up Kam. He then goes down to bed around 7:30pm. Now if we could stop waking up three times a night to snuggle, or have a bottle, or look for a paci... we would be golden.
I love this photo that Kam took of Logan. He was annoyed because she wouldn't "share" her Coke with him. This little guy is happy all the time. He can fall a million times, wack his head, and get back up and try again. No tears. No fear.
Our best eater yet as well. Third time is a charm when it comes to easy going eaters around here. He will eat anything that is offered and even throw in a "mmmm" if it's really tasty. The other night while I was out getting my hair done, Carson and Kam gave him Pizza crust. That was a hit...
It's been a pretty amazing 8 months with this little guy around so far. Each month he changes so much. We are enjoying watching his personality develop and relationships grow. I can't wait to see what next month brings.
The best belly laugh and usually only Owen or Kam can get him to laugh like this. So contagious.
Owen's tummy pain has been very persistent. It has been about two weeks now, but at least five days without being able to eat so much as a cracker. I have been talking with GI and Cardio, both local, and at Stanford. Owen has spent many days laying on the couch and each time I try to tube feed him, he tells me it hurts. We got an emergent appointment with GI on Tuesday and had a KUB (abdominal xray). It was determined that he had a little constipation and maybe a stomach virus that wasn't able to clear out due to his immune suppressed state. The plan was Miralax for three days and we had a nutrition plan to get enough fluid and calories with a 24/7 feeding pump. I had the healthcare company deliver a feeding pump... something I was sure I would never use again. The 3am beeping "no out flow" was enough to bring back all the bad memories from years Owen spent hooked up to a feeding pump.
Whatever... as long as he gets through this.
The other issue is his heart rate is more elevated than his norm. His HR should ideally be in the 120 range, but hasn't been lower than 140 since his episode in April. I love to see 140 now, but the last few days I have seen 150 -170. I am not convinced a stomach virus would cause the increase in heart rate, not unless he is experiencing more pain that he is letting on.
I called our local transplant cardio team on Tuesday to try to get in for an echo, just to be safe. They suggested we come to the ED (emergency department) and get a full workup. I would have preferred to come into clinic and have an echo, but that wasn't an option. Instead, I decided to run to GI for our already scheduled appointment and get the xray there.
This all leads us to today. Owen has remained the same, or worse, each day. He feels best when his tummy is totally empty, but he has zero reserves for weight loss at 39lbs, so I have no choice but to feed him. Such a struggle! Owen's HR continues to increase to 170 at times, so Rosenthal and his NP from Stanford called at 7:45pm tonight (Wed) and said they feel like we should bring him in to the ED. Just to be safe. A tummy ache was his only symptom in April and he ended up very sick, very quickly. So here we are....
We got a VIP pass through the ER, straight to a private room. Echo, EKG, KUB, Chest Xray, and two failed attempts at blood draws ... Owen is now passed out. After six hours in the ER, we have zero answers. :) I'll just smile because I'm so tired I'm becoming delusional. Echo looks great!! Chest and Tummy xrays look great! EKG looks great! The nurses kept missing his veins so no labs were done. We got a urine sample that came back clean. So... there's that.
I suppose since we have no idea why Owen's tummy continues to hurt. He won't eat. He isn't tolerating his full calories. I suppose we will continue to clean out his tummy with Miralax, induce some diarrhea and keep him hydrated at the same time. The ER doc just said there was a slight plural effusion on echo and to double his Lasix. I said thanks... but no thanks. Sigh.
Ready to go home and catch at least an hour or two of sleep before my other kiddos need me. I'm glad we got Owen all checked out, but a little concerned that we really got no answers regarding his tummy issues. Tomorrow is a new day!
Owen has been keeping me on my toes. He hasn't been at school in a week and I am just at a loss. He has been having tummy aches, weight loss (not quite 42lbs), and zero appetite. He is weak overall, physically, and just struggles to do a simple page of writing homework. We are only in week 3 of school and he has missed more days than he has been.
I pushed up his transplant clinic and echo to Monday of this week because I was concerned. Thankfully, everything is looking status quo. He is on his max dose of Carvedilol and Lisinopril which is making his blood pressure really low at times (90/60 is goal, sometimes 70/40). His HR is still elevated in the 140s, but better than the 150s. We discussed dropping the Lasix, but I am waiting to get labs back and speak with Stanford first. We did decide to start an appetite stimulant yesterday, Cyproheptadine, and it turned him into a PMS teen/monster child. Thankfully, other heart moms had warned me about this possible side effect so I was prepared with plenty of patience and understanding.
I had his transplant team call in a new script for Omeprazole to help with the tummy issues until we can get an appointment with GI. I would like to be on the two meds, Omeprazole and Cyproheptadine, for a few days before GI followup so I know if we need to try something different. If anyone has any other ideas.. please help! I know he takes about 22 pills a day so his tummy can't feel great. In addition to that, he gets tons of tube feeds, so I basically have to force feed his tummy so he can get minimal calories, which is clearly not enough for him to gain. He should gain about 10lbs before I would call it a "healthy" weight. He is skin and bone right now. If only it were easy enough to transfer fat from me to him.
On the school front... we have a chronic illness form at the school to excuse these absences and homebound will start (hopefully) next week. I have been picking up his homework at the school and he is getting it done at home when he feels good.
I have been talking to other heart moms about what type of wheelchair/stroller they like for their kiddos. Owen is so deconditioned and it's going to take time for him to build his strength back. It will be nice to have a backup option. Anyone have suggestions?
So this is a total bummer post. The great news is that Owen's heart continues to slowly improve. We got labs on the first try this morning. We made it to school two days this week, just to come back home, but we made it at least! Owen does his daily homework, like a boss! I am hopeful we will figure out his tummy issues, his heart will continue to slowly make improvements, and (with proper nutrition) he will start to get his body stronger.
Here is his pre-haircut "I'm a boxer" photo... Best Kid Ever!
Today is the first day of Kam's Sophomore year of High School!
She was slightly less excited this year. I am pretty sure she was bummed to see Summer come to an end. She has a heavy load of honors classes this year and only has Advanced Dance as her elective. She will be amazing and I can't wait to hear about all her experiences. It's so hard watching my babies grow up, but I love watching them learn and grow into pretty incredible people. You are beautiful Sis... we love you!
I love to look back on all her first days of school. I'm pretty sure I took this Kindergarten picture just a few weeks ago. I can still remember all about her first day and the friends she made. She started out such a quiet girl and those three hours she was in half day Kindergarten were harder on me, than her.
Owen declared Saturday, August 1st, LEGO DAY! He has been saving up all his money that he "earned" in the hospital just for this day. There were three new Marvel and DC Lego sets being released on the 1st and he had known about them for months. He had this day saved on his iPad calendar and he literally could not stop talking about it. Saturday morning he ran into our room and we quickly announced.. "Happy Lego Day!" We got ready and headed to the mall just as they were opening. Let's just say we have one very happy boy on our hands and he has been busy building "creations".
Since we were already out on a Saturday afternoon, we headed to downtown Gilbert for some Fish Tacos. They have really good Calamari fries. What could be better than delicious fish tacos and Legos on a Saturday afternoon? Coming home to take a long afternoon nap with this little guy!
Owen was back to school today and had a great day! He is starting to get into the swing of second grade and find his groove. I have a meeting with his team today to discuss a "plan" for this year. While unloading our Costco load, I asked Owen to throw away this wrapper off the water bottles. Ten minutes later I find that he had turned it into a backpack. I have an inventor on my hands.. a Supehero loving, lego master building, turn trash into treasure inventor.
Now if he can only invent a clone of me to teach Kam to drive. I seriously am a nervous wreck every time she is behind the wheel. We will get there. :) She only has about 40 hours of summer break left and she will be back to school all day.
I suppose I will just enjoy my quiet mornings with this little fella. He will keep mama busy and on her toes while the bigger kids are at school. Trying to soak it all in... we all know babies don't keep and they grow up way too fast.
