That's right....I said we've got GOOD news! This week Riley had another handful of appointments. We met with a PT therapist on Wednesday who did a PT evaluation of Riley. The goal was to see how often she would need therapy and for what. I was excited about receiving a customized treatment plan for her. After over an hour of talking with the therapist, watching her do lots of neat activities with Riley she gave me her report. Riley is having trouble still with gross motor skills (throwing a ball, sitting with correct posture, waving bye bye) but is a rock star at fine motor skills (putting pennies in a piggy bank, putting cheerios in a tiny bottle, holding a crayon). She will likely need leg and feet braces in the future. She has learned to walk but her balance has been very affected by her ear troubles, resulting in a curved alkalies heel.She has some poor muscle structure, again due to all her sicknesses that will strengthen over time as we work with her. At this time Riley needs no therapy at all, just time to grow and learn!
On Thursday we met with a speech therapist. I was super nervous about this one as Riley doesn't talk at all and she's 15 months! After two hours of watching, talking, listening, and seeing what she can do, we got the report for this one as well. Riley is able to hear but not at a normal level. She can't hear quiet noises. We don't know that this is permanent or not, time will tell. At this time she needs no therapy for this either! We were told again that she just needs time to grow and learn. Because of all her ear troubles her speech is totally delayed but she's pointing and trying to communicate in other ways.
On Friday we met with her pediatrician who looked over all the reports and agrees with the therapists. Riley will be re-evaluated again in 6-12 months with the possibility of leg and feet braces and a food clinic to improve her diet and weight gain.
Today we received the call we've been waiting for, Riley's CF blood test is negative! She has been given the clear to travel to the east coast with no therapies needed. She finally gets to just grow and be a baby. While she doesn't do everything like most other babies or even you and I, her brain is working over time according to the therapists, allowing her to learn quickly and adjust to doing things her own way.
Now I'm down to 8 days before traveling across the east coast with the kiddos and doing even more travels while we are there. I'm making purchases and lists like a mad woman. The kids have their own duffel bags with wheels, travel pillows and art supplies.
I'm asking for your input on 2 things: what is the best way to pack for such a trip where we will be almost constantly traveling for months, suggestions, tips ect. Also, please take a look at the new and improved family blog and let me know what you think of the design, my posts ect. I'm learning a lot and I've changed a lot on the blog and I know I'm not done. Thanks for reading and for your prayers over the last 15 months for our tiny rock star, Riley girl!
1: Blog format is adorable and very YOU. :-) Your posts are encouraging too.
ReplyDelete2: For traveling, my biggest tip is to keep your suitcases organized at all costs! It's frustrating enough to live out of one for awhile, and keeping them reasonably neat saves many headaches.
My other tip is that it's okay for kids to get a little bored in the car - encourage them to look out the window and play some games that require nothing but their eyes. Naming all the animals they see, or looking for the letters of the alphabet, or counting all the red cars that go by. Sing silly songs. Play the "quiet game" every so often. Save the DVD player for the end of the day.
May the Lord bless you and keep all of you as you get ready for this final week! My prayers are with you, Nichole.
((Hugs))