Today Lexi met with her Rehab/Physical Therapist at the Orem Community Hospital. They're great! It was a long appointment - 2 hours! They went through a lot of things with us and worked with Lexi a lot. I'll try to make this as brief as possible - I know these emails can get kind of lengthy!
Lexi will be doing some intensive stretches every day, 2 times a day. Each stretch is 2 min (or sets of 30 sec) long. We will be stretching: hips, hamstring, ankle, etc.
She will be seeing them at the Orem Hospital every 2 weeks for about 2 hours.
She will be fitted for a brace on her ankle/foot/calf on Monday at Northwest Orthopedics. She will have to wear this every day for 6-8 hours. We aren't sure how long Lexi will have to wear it, but it depends on how well she responds to everything. I will send pictures of the 2 options later. One is more of a foot/ankle brace (called a hinge), and the other is a full boot brace that goes from her mid calf to her foot. Either one is recommended; we are still unsure which we will do. There are benefits and downsides to both.
Lexi will be receiving Botox treatments at Primary Children's on July 19 at 9am. She will receive injections in her thumb pad, calf, ankle, foot, forearm and shoulder. She will be put under for these injections. Botox will have to be done about every 3-6 months for a while.
One week after Botox, Lexi will be receiving a serial cast on her foot/ankle/calf. This is basically to force her right lower extremity into a forced stretch. She will receive 2-3 rounds of casting (each for 7 -10 days at a time).
Lexi will be fitted for a splint/brace for her thumb and arm through Orem Rehab as well. Luckily her PEIP Occupational Therapist also works at Orem Rehab, so she will be the one fitting Lexi for her splint!
Lexi likes to sit in a "W" position which is very detrimental to joints/muscles/etc in her legs. She does this because it is easier for her right side. She is NOT allowed to do this any more! We will use verbal cues such as "Lexi! Sit like a princess!" or "Lexi! Fix your feet!" to get her out of that position. If any of you happen to be babysitting Lexi, please do these verbal cues and help her fix her feet. It's really important. If we are with you and Lexi, we will do it, so please let us.
We really want to get the word out there that "Kids Have Strokes Too"! We have ordered silicone bracelets that are purple and blue (pediatric stroke awareness colors) that we will be selling to help people become more aware of this. Like you, we didn't realize all this could happen to little kids - especially our own! We are selling them for $2 each or $10 for 6. Our goal is not necessarily to raise money for Lexi's medical bills/Stroke research, but to increase the awareness of Pediatric Strokes and all things associated with it. We have a youth size for the younger kids and the standard size for everyone else. We would love for everyone to have one, and wear it as often as possible to get the word out there. We hope you can help this cause and increase awareness. The bracelets say "Kids Have Strokes Too chasa.org". Let you friends and additional family members know, too! If you decide to get a bracelet, please wear it on you Right wrist, as this is the side that is affected in Lexi. Bracelets will be delivered to us on June 23, and distributed from there.
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