Today was one of the best days we have had in awhile! We went biking in Waverly – a town about 50 minutes from our house.
We met up with Craig’s parents and his sister Kelly. The trail is on an old railroad and is mostly flat and mostly shaded with so many nice rest stops on the way!
If you’re looking to try long distance + flat land + shade – this is the trail for you. We rode 14 miles! Carver was on the tag along, Gannon tried out his new bike seat. For timing’s sake, we did about 14 miles in 2 hours with several stops.
I worked overnight Friday night so even on minimal sleep I felt really good finishing the trail.
Kevin and Debbie (my in-laws) took us all out to eat after the bike trail! Gannon had us all cracking up we had tears in our eyes and our bellies hurt with laughter.
As you can tell, I got a little too much sun! But with the right filter maybe I can transform it to a tan 😉
Carver LOVES the tunnels, he loves to yell ECHOO as we drive through and asks us every time to “get our echos ready!” Before we drive through the tunnel.
We can’t wait for many more days on the trail with family! We just love Craig’s parents and his sister, we had a blast and they are always so willing to jump in and drop EVERYTHING for the boys.
Short and sweet! That was our day! Tomorrow I know we will be in the pool! Craig and I are laying in bed re watching our favorite TV show Scrubs for the millionth time. It’s on Hulu now – I sincerely have about every episode memorized and it really peaked my interest in the medical field when my brothers watched it growing up.
Remember I bought the DVD 4th season on a field trip to Barnes and Noble in 4th grade 🙂 Appropriate for a 4th grader? Nope. You can take that up with my parents – my dad loved the show too 🙂 I will NEVER FORGET how hard Dad laughed at this joke:
Today we had a neurosurgery appointment and a echocardiogram of his heart.
The short version of our neurosurgery visit: Gannon does not need intervention to remove the fibrolipoma in his spinal canal.
The long version: maybe someday if he has worsening bowel or bladder or walking issues, they may possibly remove it but it is unlikely that it would cause issues – especially not his low muscle tone but it could cause bowel/bladder issues. If Gannon had a dimple or a pitch of hair or a mark on the bottom of his spine they would be more concerned. If his spinal cord was just a little longer they would be concerned. If he was walking on his tip toes this would be a concern. But for now, we are calling it an incidental finding which is ironic because 3 weeks ago we thought that was our “answer.”
The short version of Gannon’s echocardiogram: Gannon has a dilated aorta.
The long version: When a doctor suspects that a kid has Ehlers Danlos, they send them to get an echo. There is a very specific part of the heart they measure and monitor. There is one type of EDS has this specific abnormality – that’s vascular Ehlers Danlos. Gannon has this abnormality. This is also the kind of EDS my cousin has.
There are several different types of collagen. Vascular EDS effects collagen III – found in the lungs, intestines, and blood vessels. They make vessels and organs weak and more prone to rupture. They make organs more likely to rupture. The statistics are scary. Here’s a paragraph that was difficult to read:
I’m not an expert. I don’t have all the information I need yet. Genetics is our next stop, July 28th at the University of Iowa. I know that we will now be adding cardiology to our team and Gannon will need close follow up – probably frequent echocardiograms. The big risk we are worried about is that a vessel could just burst at any time – looking at statistics there’s an 80% chance of that before he turns 40 IF this is what he has.
I want to be very clear – I am the one making these connections. The ultrasound tech says that other forms of EDS don’t typically have this dilation of the aorta – only the vascular type – I mean that’s exactly why they wanted this echo in the first place – to find what we found. While our “primary” at U of I STRONGLY suspects a connective tissue disorder – likely EDS, no one has sat us down and explained what this really means and what significance this finding is.
At the end of the echo, the radiologist came on and said, “I can’t tell you much more than this but we do have to tell you because there isn’t a cardiology follow up today. There is some dilation of the aorta, there’s a scale we use from -2 to +2 to gauge the dilation. -2 is very small and constricted, +2 is considered on the more dilated end, 0 would be normal, Gannon is a +2. If you want to know more you need to schedule a cardiology follow up, we will need another echo of him in about 2 years.” I tried to ask questions and he said “you need to schedule a cardiology follow up.”
So that’s what I know. Gannon probably won’t be able to play sports (especially contact sports) or lift weights. We need to be careful with him as his organs would be more prone to rupture (if he has this).
Here is a link to a very helpful article. Looking through the symptoms is startling. He has so so many of the symptoms of vascular EDS. It just explains so much.
Kasey Musgraves says it best, I’m happy and sad at the same time. I’m almost giddy with excitement knowing that we are so close to understanding our sweet sweet boy. I’m so sad that this is the kind of EDS he probably has. Any other kind is much “safer.” This is “the bad kind.” Out of all 13 kinds, this is the one (probably maybe, won’t know for a long time) he has (possibly.)
Are you as confused as I am? Me too. I’m hoping to touch base with Center for Disability and Development can clarify this for me tomorrow. They are our point of contact managing Gannon’s case right now. I’ll keep ya’ll posted.
I’m throwing myself a pity party today. I’m also throwing myself an “I hate coronavirus” party.
We had a visit yesterday and Iowa City with gastroenterology. We need to schedule the procedure that will help treat/resolve Gannon’s anal achalasia. This involves him being sedated.
We already have a consult with neurosurgery tomorrow as well as an echocardiogram of his heart tomorrow. The stars aligned and we were able to snag an appointment time for tomorrow and Gannon could have all three very important appointments tomorrow in one day.
Because Gannon was having a procedure and will be sedated and not just an appointment, that meant Craig could also come with for the first time in months.
We scheduled the appointments and I was so excited that for the first time since Gannon was born we had a diagnosis and a treatment plan for at least one of his problems. After Wednesday, maybe Gannon wouldn’t cry every single time he poops.
So I raced home from Iowa city, threw supper together, and was out the door and on my way to work overnight last night.
On my way home from work this morning, I got a phone call from Iowa city to schedule Gannon’s Covid swab for today. He said he has to have one collected before noon today in Iowa city or he can’t have his procedure tomorrow. Keep in mind, I had just got done working the overnight, Craig is already at work, and we now have three hours to make a 2 Hour drive one way just to get a swab in his nose.
I asked if they could make an exception and let us get swabbed at a closer facility and they said no. I asked if we could come super early tomorrow and get swabbed because his sedation wasn’t until 11. They said no. They said there was absolutely no exception they could make to this rule other than Gannon being in Iowa city by noon today.
Craig is already at work. I just worked an overnight on zero sleep as we were in Iowa City yesterday, now entering my 26th hour awake as I type this, my mom is in Rochester getting more testing for her thyroid cancer, and my sister is on the way back to the doctor with a sick Georgia.
So all of the appointments that we had to move around to make room for the sedation tomorrow had to be moved back. The procedure is canceled, we have to wait another three weeks, and now that he isn’t getting the procedure tomorrow, Craig isn’t allowed in the hospital. I rearranged work, I rearranged childcare, all because the scheduler forgot to mention this teeny tiny detail that is the coronavirus swab. Not only that, but the next day we have to schedule this procedure, we have to rearrange two of his other appointments to have it THAT day.
Maybe it is the no sleep, maybe it is because I’m so sick of driving all over the Midwest, maybe I just wish another adult could come with me to all of these big scary appointments with our squirmy toddler, maybe I just can’t take being inconvenienced by the pandemic for just one more day, but damnit I’m throwing myself a pity party today.
We’ve already had a big day and it is only 3:17 pm as I’m writing this blog post!
Craig got to sleep in for Father’s Day (and because he had a little too much fun last night with friends) and when he woke up we loaded up to go on the bike trail!
We had to pick up our bike trailer because we got our tires fixed. The bike trailer wasn’t as aero dynamic as we would like but today it ran like a charm!
We picked up a Casey’s pizza and met my mom and brother in Fredericksburg (our favorite bike trail). We had a nice picnic in the shelter before our ride. Mom and Karl haven’t been on the trail before and my mom hasn’t ridden a bike in over 5 years.
You have to be a little careful because there are some low spots in the trail but that makes for great puddles to drive through! Carver loved riding through the puddles.
Today was the first day we took Carver’s tag a long bike out and we LOVED IT! Carver rode the whole trail with me! He could pedal or just hang on for the ride. The internet told us the whole trail was about 5 miles but it didn’t seem that long at all! We had been on and done with the trail in under an hour. They have such nice resting spots too:
Here we are at the finish line – mom snuck up on Craig as I was taking her picture 😂
Carver and I celebrated his accomplishment of riding the whole trail on the tag along!
We also found an “alternate ending” to the bike trail to avoid the mishap/dangerous low head dam. You can read about that incident here:
I’ve been told they are putting up hand rails in the bridge now! 👍🏻
Here is my brother Karl finishing the trail:
Next up on our summer of biking mission is to get Gannon fitted in his new seat! Check out what is coming on Thursday:
And of course we finished with some ice cream! My favorite: cotton candy twist with a waffle cone!
I snapped this picture at the park before we left on the trail, it’s been a wonderful Father’s Day with Craig!
When we got home we took a dip in the pool which was so relaxing. We were initially told the forecast called for storms and bad weather but we haven’t had anything like that! It’s been a wonderful weekend and I’ll tell you more about our Saturday in the next blog post!
We had appointments for Gannon on Wednesday at the University of Iowa.
I debated for a long time whether or not to keep the appointments as we were continuing care through Milwaukee but I’m so glad I kept them.
The first appointment was at the center for disability and development. We first saw Dr. Reasoner who is a developmental pediatrician. We had an hour long appointment with her going over every single little thing I’ve ever noticed about Gannon. It was EXTENSIVE.
Then we met with a physical therapist who evaluated Gannon’s fine and gross motor skills for about an hour. They both met, compared notes, and came up with a conclusion (shared at the end of the blog post)
That leaves us with pending appointments with neurosurgery, genetics, neurology, urology, gastroenterology, an echocardiogram of his heart, fitting for custom leg braces, and follow up with the center for disability and development. WHEW!
Again, Dr. Reasoner strongly suspects a connective tissue disorder at a minimum, likely a form of Ehlers Danlos syndrome (there are 11 kinds) considering the family history. We were also reminded that there is likely a cause for his “constellation” of symptoms and as random as they seem, there is an answer, there is a diagnosis to be found. Neurology even suggested that there could be a combination of disease processes going on. This is both worrisome and encouraging. I would love for his muscle tone and other issues to be benign and random but realistically, I need to put a name on this and there are two many pieces to the puzzle that I’m sure will all fit together one day.
We also learned that Ehlers Danlos can be passed down genetically, it can be random, and different affected members have varying expressions of the disease. Could it be from me with my insane stretch marks literally all over my body from the day I turned 10? Could it be Craig who had issues with hip dislocation at birth? Could it be from me who meets the hyper mobility Beighton scoring criteria? Could it be from Craig who also meets the criteria? Could it be from me with Ehlers Danlos on my side of the family? We don’t know yet and only genetics can know.
Where are we with Milwaukee? We will be in Milwaukee August 10th for the muscular dystrophy clinic and consults with neurosurgery and neuromuscular specialists and a follow up with Dr. Sood, the GI doctor who brought us to Milwaukee to begin with. We will keep our genetics appointments, but other than that, we are switching to U of I. The drive is too far and Gannon tends to be a bit car sick sometimes.
Neuro surgery “triages” patients based on their necessity to be seen – Gannon got in on next Wednesday. That makes me suspicious they will want to remove the fibrolipoma from his spine. He will have an echo of his heart too because Ehlers Danlos often has cardiac involvement as well.
Another symptom we are looking into is called micrognathia. It’s essentially an extremely small jaw. Here’s a picture:
And here’s my Gannon the day he was born:
Another star in the constellation – could it be something or nothing – we don’t know.
So that’s the exhaustive summary of all the information. Only genetics can really tie the knot on this bow. They are our answer and hopefully we will know more when we see them August 10th. In the meantime, Dr Reasoner typed up a nice little summary for us:
Number one: neurosurgery consult regarding the fibrolipoma of the filum terminale.
Number two: echocardiogram to look for any changes consistent with a connective tissue/collagen disorder.
Number three: genetic consultation and genetic testing to target A likely underlying disorder probably a connective tissue/collagen disorder.
Number four: AFOs (leg braces) are recommended as a temporary measure to help with his gait stability and fall reduction given his joint hypermobility.
Number five: continue AEA developmental therapies. He would benefit from additional private outpatient physical therapy services at this time to work on trunk strength and joint mobilization.
Number six: recommend labs TSH free T4 and cortisol as well as an endocrine consult.
Number seven: can return through Nuro developmental clinic in six months for a full team assessment.
Thanks for reading friends! Also shout out to my mom for riding with us on Wednesday so I could sleep on the way home and get to work on time 🙂 she’s the BEST!
It was a good weekend but it went by too fast. It started off with a family day on Friday after I woke up from working overnights.
My sister lives about two hours away so we don’t get to see each other very often. We got to spend some time together visiting at my moms house on Friday.
By the time I got there mom was thankful to see me because she had her hands full with all four grandkids under the age of three! We just love having big family night when all of the cousins are around.
My nephew Jasper was born in January and he’s also my godson. He is the giggliest baby I’ve ever met in my life.
On Saturday my mom was brave enough to watch the grandkids again so Kayla and I could have a morning trip to one of our favorite towns: Decorah. I used to work in Decorah. It is about a half an hour north of our house and the closest Walmart (that’s how you tell if a town is big in NEIA.
They have wonderful biking and hiking trails so Kayla hit the trails and I went to Walmart to stock up on all of the necessary pool chemicals so we can fill up the pool this week.
We got to stop at a store I’ve never been to before which is kind of a makers market called Rendered Unique. I got this hat and some cute earrings.
We have a friend who displays her artwork for sale at the store. Decorah is known for its small businesses and makers. We went to the farmers market and Kayla bought us an amazing soft pretzel that I will never forget as long as I live.
After we got home we hung out for a bit before Craig got off work and we went on a bike ride in Fredericksburg again.
Carver rode his bike this time so we did not shoot the whole loop. We had gotten what was left over of a hurricane that hit Iowa last week so some of the bike trail was underwater.
We had Georgia with us and we had a blast playing at the park. It reminded Craig and I am how out of shape we were trying to chase the kids around. Carver made a friend at the park so I don’t have many pictures of him!
When we came home mom offered to watch our boys so that Craig and I could go on a date night. They recently re-opened a restaurant just a town over from us so we had supper at the White House. The food and service was amazing!
When we got home there was still plenty of time left so we started to refill the pool in hopes that it would be ready to go by this weekend.
The boys were so so excited and running around all over the inside of the pool before we even filled it up!
Overall, we had a great weekend even though Craig and I both had to work on Sunday. I think most of our summer will look like this: pool, biking, family, and work!