I haven’t reported on Gannon in a very long time so I thought I’d let you guys in on how he’s doing.
I’ve been meeting Gannon’s Keystone Early Access team through phone calls this week and they have been super helpful. We are getting things lined up again to get Gannon the help he needs as soon as everything is opened up.
Gannon is almost 15 months old. Gannon will say “ah” for up and “da” for Dad. He can tell us what an elephant says, he can wave bye bye, he can blow kisses, he does a lot of imitating but none of this is organically initiated and takes a lot of bribing and prompting. He has more sign language than words like “more” “please” and “ all done.”
We still don’t know if the tubes helped his moderate hearing loss. He was supposed to have a follow up hearing test that got cancelled because of COVID-1. So hopefully that will be rescheduled towards the end of May. He seems to hear things far away or in the distance. He flinched when Betsy barks which is promising.
We have an occupational therapist on Gannon‘s care team through Keystone and I worked with his coordinator yesterday and we all discussed some findings that are concerning.
Gannon has always been behind as far as his gross motor milestones go. Slow to roll, slow to sit up, now slow to walk. When Gannon stands his gait is a little off like his muscles are weak and his ankles seem to hold more pressure as you can see in the picture. He seems “knock kneed” which he could grow out of. Gannon seems to have overall low muscle tone. I am so happy to report though that Gannon took 7 STEPS IN A ROW tonight. He has been progressing the past few days and now he walked to my mom. They don’t call them baby steps for nothing!
While we are so proud and happy for Gannon, we still have walking concerns. Gannon will try to take a step and it’s like his legs give out. Gannon bear crawls everywhere and he has to go into a bear crawl position before he can stand up straight which is actually a concerning finding as well. I’m just overall not pleased with his gross motor development at this point. He has been standing for months with no real signs of walking or taking steps until today – THAT’S where my issue is – he hasn’t PROGRESSED – he has been standing long enough he should be walking by now.
When I help him sit up it’s like all of his joints are loose and I can feel them popping if I gently pull on his arm to help them come into a sitting position. Which isn’t super uncommon with low muscle tone.
Gannon still has the really big belly and weak abdominal muscles. Any hope that I thought his belly would go back to normal after his bilateral hernia repair is lost. He is back to his old self including extreme constipation and crying when defecating. We cannot transition him whatsoever off of formula to whole milk because he backs up so bad. He has an allergist appointment in August and I hope that they can do some kind of lactose testing to see if he is intolerant to something that is causing the severe constipation. I can’t emphasize how hard it is to watch him literally stop in his tracks in the middle of playing and just scream and scream because it hurts so bad for him to poop. It will go on for hours at a time until he can pass it.
In terms of his belly we are rescheduled in Milwaukee for June 1. We’re trying to decide if we should drive there or the Sunday before or the day of. Only one parent will be allowed to go.
You can read more on the testing that we are expecting when we are in Milwaukee here:
Right now we have a speech therapist, occupational therapist, physical therapist, and our coordinator on our Keystone team with access to other professionals as needed such as dietitian. It’s hard because we can’t all meet in person and with these new recent developments and delays with his gross motor skills I’d really like to get all of us in the same room again soon.
I’ve been spending way too much time on the Internet researching what Gannon‘s leg and muscle weakness could mean and my keystone team recommends a consult with genetics and neurology which I would really love. However, I think we have to wait and see what the center for disabilities and developments recommends when we see them in June.
I have a tele health appointment with Gannon’s regular doctor tomorrow morning to chat more. I’m so fidgety and anxious because I feel like we’re just wasting time.
- I want a diagnosis yesterday.
- I want treatment yesterday.
- I want therapy yesterday.
- I don’t want to wait and see.
- I want to drive somewhere and show them my sweet sweet Gannon and I want all of the testing that he needs right then and right there.
We have been fighting for a diagnosis for so long. It’s frustrating. COVID is frustrating. Rescheduling is frustrating. Waiting is frustrating. And I’m tired.
We love you Gannon Joe!