Milwaukee Day 4: HOME + MRI Results

I know you guys have been waiting, I don’t have much to offer.

Gannon has a fibro lipoma of the filmum terminale. If you google it, it’s associated with kids with spina bifida and tethered Cord syndrome. Maybe Gannon has a form of that, maybe not.

This is an abnormality of his spinal cord. It could get bigger and cause more problems as he gets older. This could mean something, this could be nothing. This could be the answer to all of our questions – this could explain every single one of Gannon’s symptoms. It could be totally benign. We were supposed to find out today but we didn’t.

Gannon has anal achalasia – this could be totally explained by his fibro lipoma or it could be totally unrelated.

Gannon could have a genetic condition. Doctors are leaning more towards Ehlers Danlos syndrome and less toward Prune Belly Syndrome but we won’t know until we consult genetics which also didn’t happen today. His distended bladder, undescended testicles, and paper thin abdominal muscles could be prune belly syndrome or totally explained by the fibro lipoma.

Gannon may need a laminectomy (spinal surgery) to cure/treat his fibro lipoma, he may not. It could be nothing.

Gannon’s low muscle tone cannot get better.
Gannon can gain strength in his muscle though through physical therapy but you can’t change muscle tone.

Gannon is being referred to a muscular dystrophy clinic. This could just mean he is being referred to a clinic who specialized in muscle disorders, this could mean they need to rule out muscular dystrophy.

Gannon is being referred to a neurosurgeon and a geneticist, all in the muscular dystrophy clinic.

It’s all up in the air, the ride home from Milwaukee was the longest 4 hours of my life, Gannon threw up on the way home, we both cried on the way home, we were both so sick of being gone. We still didn’t get a diagnosis. Only more questions, now thrown into the outpatient world of coordinating appointments.

Someone once told me chase the therapies, not the diagnosis. We will start physical therapy ASAP.

The most reassuring conversation I will take away from this week was with one of the residents caring for Gannon.

“We see a lot of kids who are perfectly healthy and parents INSIST there is something wrong with them but they have a perfectly healthy normal child. This is not that. There is an answer to be found. This isn’t just coincidence. Your concerns are valid. Something is wrong but it isn’t life threatening today.”

That’s what I know which isn’t much. I’ll update when I know more.

Have a good night friends!

24 thoughts on “Milwaukee Day 4: HOME + MRI Results

  1. Mary Etherington says:

    So glad you’re home and Gannon can sleep in his own bed! I’m so sorry you didn’t get any solid answers. You’re in my prayers, Kalissa, and God is on your side!

  2. Beryl Hoff says:

    I am new to you blog. I agree with Mary, 100%. God is with you, though it probably doesn’t seem like it. You have a beautiful little boy and he looks so happy despite what he has been through the last few days. Being home will help so much. You are both in my prayers also.

  3. Jill Klop says:

    Thank you for giving us updates. I really feel for you. You sound a little bit defeated. I know that’s just for today. You are such a good mom. It takes so much strength to keep going on this journey. I’m sorry this visit wasn’t all you’d hoped it would be. I hope the next round of appointments will get you closer to knowing what is the best treatment for your sweet baby boy. Praying for you guys!

  4. Cindy F says:

    Those are a lot of maybes thrown at you! Take heart! You are on track and will be seeing specialists to rule things out and in the meantime are ahead of the game by getting him into physical therapy. He is a cheerful, happy little boy with a strong mother to advocate for him. Take some time to take care of yourself too. You will get through this.

  5. Cathy says:

    I am sorry you fidn’t get the answers you hoped for. Rest, you both need it. Therapy may help. It has helped me in the past. I will keep your family in my prayers. Try not to stress too much.

  6. LaNan Eldridge says:

    Appreciate you taking the time for updates. Prayers being sent . Your uncertainties remind me of our grand daughter’s journey nine years ago. They finally found the answers and she continues with annual visits to her specialists. But she’s one shining star and a very determined little girl. I hope your answers are found soon!

  7. Kim LeMere says:

    Going home, wonderful words to hear after the last 4 days. I wish you had an answer but at least they also think something is going on, your doing a great job advocating for Gannon. Deep breath, enjoy being home, sleeping in your own bed.

  8. Joy says:

    So glad you are finally getting some answers but sorry that there are so many more questions. I can offer some insight on my daughter’s issue with poor muscle tone though. Yes, she will always have it and didn’t walk until she was 2 1/2, but with the help of therapy she can now run, throw and kick a ball and has amazing strength. Gannon has an amazing support system and is such an adorable little guy. Our thoughts and prayers are with you.

  9. Ellie says:

    So happy you were able to go home to your own beds! Physical therapy can do amazing things. You may get a diagnosis but it’s more important to have some plans for what to do. Like so much of life, it’s hurry up and wait! Never mind. You are making progress for you wonderful little guy and that’s all that matters. Continuing to keep you in my prayers.

  10. Christine says:

    Glad to hear you r home. Sorry to hear you didnt get a definite answer. But remember the last part of your writing. There is something wrong, but not life threatening. Momma you pushed and were/are the best adivict for your son. Keep pushing forward. Lean on your friends and family.

    • Dorothy Karns says:

      Kalissa, I general do not post but I am called to do. You are one of the strongest I have ever encountered. I am glad you are the precious mother of Gannon. You will get this all resolved. Gannon is such a sweet handsome boy. I am glad he has you for a mommy. You are the best!

  11. Elle says:

    I’m glad you were able to get home to your family and your own beds. I’m sorry you have yet a ton more questions yet there is a plan in place for “rule outs”. Your Resident: rock star. What wonderful words filled with thought to a fierce Mom. Therapies are a positive focus. I bet Grandma Jo will be getting involved with that as well 🙂

    Take good care. Prayers for answers while Gannon works with PT.

  12. Paulette says:

    Glad you’re back home to rest and recover. You know more than when you went, although nothing definitive as the one thing. More to rule out with genetics and consults, but with each step you’re making progress in understanding what’s up. Hugs to you both!

  13. Annie says:

    He’s got that little leg propped up on the crib bar, as they do. Looks happy to be home. Hang in there. Gannon appears to be VERY determined.

  14. Joyce Coker says:

    Praying hard for all of you. Gannon, you angel, I hope someone finds help for you soon. You are loved.

  15. Linddylou says:

    I also have a son who as many of the same conditions. I use to feel bad for myself some day, than I would put my sons in a car . We have a friend who had a son who was more disable than my son. We would visit and leave for home. I thanked God for all the blessings he gave me.

  16. Sally A warren says:

    I know you both will sleep better tonight in your own beds. Bless your heart. So glad you are getting confirmation that something is going on . I know you were SO happy to see Craig and Carver! I bet Gannon was too. We are praying for you….for wisdom for your doctors , nurses, therapists, radiologists, technitians, everyone involved. Take some time to take care of yourself. I hope you can have a few days off from work and rest. Gannon has one great mom!!

  17. Kevin Frey says:

    Praying for Gannon and you all. You have had so many huge struggles in your life the past few years. Holding out hope for you.

  18. Susan the Farm Quilter says:

    So glad you are home, but there are a whole lots of “maybes” from the medical team. The resident is correct…something is going on with Gannon and I certainly hope they come up with answers soon. Definitely chase those therapies – you know how important they are! Have you thought about learning and teaching Gannon sign language? Signing Exact English is what students are taught so they can be taught to read…I used to use it when my students (I had some that were non-verbal) and found that I could use it with all of my students to enhance their learning as well as giving them instructions when we were in situations I would have to raise my voice to be heard (assemblies). I hope you are all sleeping deeply while I am typing this at 2:11 AM PDT.

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