Jan 14, 2019: Well… this is what we woke up to find…
Soaked and smiles! It’s always nerve racking to put him to bed and not know what I’ll wake up to… and when I get smiles I know everything’s good! Got him bathed and getting ready for Speech this morning. Hopefully that can help him stay on the upswing!! We’ve been having some weirdness with his urine output again, and that sure keeps us on our toes!!
Jan 13, 2019: This guy has been very sleepy today… and not drinking… and not peeing. I’m hoping whatever will break and we can get back on track tomorrow. Say a little prayer will ya? I’m trying really hard to not get all stress ball!
Keegan’s grandmother Rhonda was surprised by her co-workers.
“I had the sweetest surprise today. I was coming back from lunch walking in the doorway you see in the background.
I saw my manager Ashley walking away out of one of the offices.I saw she was wearing a TEAM KEEGAN-FINDING HOPE IN THE DARKNESS t-shirt. I said hey your wearing s Finding hope in the darkness t-shirt when did you get that. She turns around a big grin on her face and says yes I am, and then my other co-workers pop out of their cubicles with their Finding Hope In The Darkness t-shirts on too!!!
Who knows how long they’ve been planning the surprise. Weeks probably. They ordered the shirts secretly, had emails going back and forth planning for the reveal.
I was and am completely blown away. The sweetness, support, kindness and love. I cried y’all. They were all so proud and happy that they had surprised me and made me so happy.
No everyone involved was present today, sadly but I know know they are right here with me and #teamkeegan
Feeling the love y’all. God has perfect timing!!!! ”
Rockin’ my #TeamKeegan gear for my buddy! Let’s rally behind this amazing little guy — use his hashtag #TeamKeegan and share some love for Keegan!!
So we got the rash under control, swelling in the feet dissipated, spasming and tone in the right side is closer to baseline. We have a new concern about heart rate and decreased activity. Continued concern about Keegan’s inability to move his hip, refusal to sit stand or walk, and obvious discomfort. Confusion about the underlying cause for the tone issues, and hip pain.
We saw Neuro and he felt confident it isn’t seizure activity and isn’t neurological… So he sent us to UC Davis where he would be able to be seen by a Peds Orthopedic Specialist.
We had a pretty rough night getting through the ER and admitted and acclimating to a new hospital, system etc… But, this morning we were able to meet with a team of Drs. Have had consults with several specialists, and have many eyes and brains at work…
What we’ve determined this far:
•Everyone is 99% sure the hip is not infected
•Keegan has hip dysplasia (news to me), they believe it is plausible that is what is causing him pain. We will be seeing a Peds Ortho to monitor this and determine if any interventions are necessary
• PM&R will be getting involved to discuss Keegan’s tone issue, the use of baclofen to manage it, and continuing to monitor this after we’re release (he was payed away so we’re still waiting for him to return to discuss everything)
• Cardio came and is very confident that there is nothing wrong with Keegan’s heart and is not concerned about the bradycardia. He believes this is Keegan’s norm and that following up with our new Cardiologist at home will be sufficient.
I think that’s it… I’m running on information overload and 3 broken hours of sleep but I wanted to let everyone know what’s going on. It’s been difficult to explain because there were so many I don’t knows.
I’ll leave you with a photo of us on our way to the Drs office yesterday and the cute little sign on the door to Keegan’s room.
Hey there #teamkeegan !!!
We’ve had yet another rough week following our last hospital stay that landed us in the hospital at UC Davis this time.
First a little back story… Keegan developed these pustules that spread into a difficult to manage rash that we thought for a minute was MRSA (GASP 😱 that was a good scare). It all started back on March 23. We spent a month trying to treat/manage it topically, but noticed swelling in his feet that became persistent. One morning I noticed his right foot was hot tobthe touch and he jerked away when I touched it… Ended up seeing out Ped on April 24 at which point we decided to start oral antibiotics. On the 26th I noticed his right arm and leg were trembling/spasming and thought that was concerning so we were sent to do labs, they came back normal. I woke up in the 27th to Keegan wailing in pain and an unrecognized cry which had me worried he was having a seizure. We were taken via ambulance to the ER, and admitted for 5 days. Extensive testing and everything kept coming back unremarkable… After some broad spectrum iv antibiotics, multiple labs, several ultrasounds, X-rays, 2 different MRIs we still couldn’t figure out why Keegan was guarding his hip and showing increased tone on his right side… We were sent home to follow up with our team and also getting in to see a Cardiologist about his bradycardia. Since we were released on the 1st Keegan hasn’t been himself. We saw the Peds office and they had concerns. We saw cardio and he had concerns. We got into Neuro and he is concerned… So he sent us to UC Davis to try and actually get to the bottom of things.
Here’s some photos and video documenting our experience thus far.
To be continued…
Poor Keek’s and his cold feet!!!
Keegan has Reynaud’s, which means he has trouble warming up and his extremities get ice cold due to poor circulation. This is always exacerbated during the cold months. We try really hard to keep Keegan warm with a heated blanket and on his pads downstairs and a space heater nearby when needed. He has a space heater in his bedroom to keep his room toasty at night. I use heated rice pads to warm him up quickly, handy in the mornings. We also use foot warmers that stay warm for hours! I put toe warmers on before I put his shoes and AFOs on… if I didn’t his little purple feet would remain cold all day and doesn’t that sound miserable?!!
I preferred the foot warmer style because it covered his entire foot versus toe warmer that only cover half… but it’s better than nothing!
#teamkeegan #ablindjourney #specialneedsparenting#specialneedsmom #septoopticdysplasia #opticnervehypoplasia#reynauds #purplefeet #coldfeet #toesisfroze
This is the face of rare. It’s also the face of HOPE, incredible strength, and endurance. Keegan was diagnosed with a rare disorder, Septo-Optic Dysplasia/ Optic Nerve Hypoplasia at birth, with it there have been many other diagnoses in the course of his 11 years… One thing I can say about Keegan and so many of the children with rare disorders is they are the most amazing children you will have the pleasure of meeting. Keegan inspires us because he tackles every obstacle placed in his way and nothing dulls the shine that is his incredible spirit!
Today is rare disease day. A day to recognize the many people diagnosed with a rare disease.