Rise Up 4 Ruby

196 days

Ruby and all her luggage 😂 First time taking the wheelchair to ABA. It’s an adjustment for all of us. Hoping it does well🤞

Rise Up 4 Ruby Update

We’ve have an eventful few months. Swallow study, ultrasounds, feeding eval, hospital trip, the list goes on.

Ultrasounds looked good. The swallow study showed aspiration on all types of liquid/thickness. We have no other indicators of aspiration, such as lung infections and voice changes, so we’re reluctant to believe its accuracy. She was evaluated by a feeding therapist at the children’s hospital who agreed the test might not show what’s really happening while she’s eating. However, she admitted no one at there clinic would be able to work with Ruby due to her unique needs. She suggested an intensive feeding program (wasn’t aware of any in the area) and gave some suggestions on what type of therapist to look for.

We’ve got a slew of specialists appointments in August and got worked in for a gtube change with her surgeon next week due to it malfunctioning.

She continues to get ABA therapy M-F and PT, OT and ST (not feeding therapy) twice a week each at the same center. We are so grateful for all her wonderful therapist, BCBAs and RBTs. She’s made so much progress 🩷

She went to her first movie, the life action Moana, and she did very well. I think it helped that she knew all the songs and had a light up bucket 😂

We are very excited that her new crocodile all-terrain gait trainer was approved and will be here on Wednesday!! This has been a long fought battle as we’ve been trying to get one since November. Praying she takes to it quickly and isn’t intimidated by the size, color and design changes.

Look forward to sharing more positive news in the next month. Enjoy the photo dump.

Update: everything went well! No tubes, no reflux damage and airway looked good. We’re heading home!

We’re all checked in. Hopefully nothing major today 🤞 ear cleaning, scope to check tonsils, adenoids and reflux damage. Sadly, we’re Dr. Jordan’s last procedure of his 41 year career. We’re sad to see him go but grateful for all the amazing care he’s provided. He’s also the only local specialist Ruby had. And by local I mean 40 minutes opposed to 2+ hours away lol prayers everything goes smoothly 🩷

Ruby was able to go back to ABA and her other therapies on Wednesday. It’s always tough after an illness getting her to tolerate feeds again. She suffers from chronic constipation and vomiting on a good day so adding in illness and trying to figure out which problem is causing what symptom can be tricky. Anyways we’re happy she’s on the mend and able to see her “friends” again. I owe a lengthier update on where she is in general so that will be coming soon. Just wanted to let you all know she’s doing ok!

Update
Ruby had started vomiting and running a fever last night. Fever responded to med but we’re still toying with when to get zofran along with her seizure med to make sure she keeps it down. Her heart rate had gone down to the 120s for a couple hours in the early morning but returned to the 150s. We were told this is normal while having the flu. We’re being released with zofran and told to return if she can’t keep her seizure meds down or if she seizes. We didn’t push to stay because we have the freedom to make adjustments without “needing a doctors order” also neither hospital was able to supply her formula (or feeding supplies) and the first didn’t even carry her diaper size. DME won’t replace supplies used during inpatient stays and had Matt not been available to bring supplies she wouldn’t have eaten for 24s. We also have all the equipment at home we need for intervention/monitoring (oxygen, suction and pulse ox) and her hospice team has been great about meeting our needs almost instantly. So we’re happy to be going home with hopes we don’t have to return. No illness is ever convenient but this one was particularly bad timing as she had an eval scheduled for Friday and an ultrasound and swallow study scheduled for Monday which we’ll have to reschedule. I’ll post updates if needed but if you don’t hear from us just presume we’re riding it out.

***update*** surgery went well. She was in a good bit of pain but they gave her an extra med. Now we’re heading home. In rain and rush hour traffic 🙃

After 2 reschedules due to seizures and 1 due to the BCBS debacle, Ruby’s surgery day is finally here. Send us some prayers. We’ll update once she’s out.