We are so happy to finally see the sun and milder temperatures.Frankie had a blast in the snow though. She absolutely loves to walk in it. We built a snowman for the very first time last weekend. Frankie observed patiently and was so happy to see our little Texas snow-lady, even though she wanted an Olaf.
If I could have background music for this post I would choose, "That's just the way it is," by Bruce Hornsby. This week started off a little rough. On Tuesday morning, I stretched Francesca's leg/foot out as usual while getting her ready for school. After doing so, I put on her braces and shoes. She stood up and could barely walk.At first, I panicked. Then, I remembered that something similar happened to her when she was 3.I asked her if anything hurt and she said "No." I checked for blisters and redness on her foot and didn't find anything.I quickly called Mark and emailed Jill, Frankie's physical therapist.
My first thought was to keep her home from school that day, but she was in a great mood (despite getting over a cold)and she was able to walk with a limp, for lack of a better word. Her gait is very distinct anyway, but now it seemed like she was injured. I drove her to school early and spoke to the teachers explaining Frankie's condition.They assured me she would be ok and that the kids weren't going outside to play that day...she would be pretty sedentary. I asked them to call me if she seemed like she was in pain.
The following day I had two physical therapists observe her gait and we all agreed that it appears she is having a growth spurt.This is common for children with hemiplegia during pre-adolescence. As their little bones grow, spastic muscles become tighter and tighter. Many kids are in excruciating pain. Some children will get Botox (Yes, the same stuff that helps with crows feet) to relax the muscles and allow for more range of motion.Massages and constant stretching are suppose to alleviate this pain and help stretch out the muscles that need to catch up with the growing bones they are attached to. We have a pending appointment with our Orthopedic Surgeon at UVA in two weeks and will hopefully get more answers soon. He may suggest bracing her at night. I'm still waiting on a call back from them to move our appointment sooner.For now, I'm using essential oils during our massages and stretching her like crazy!
On a brighter note, Frankie has been making huge strides in the two preschools that she attends and in therapy.One of our biggest goals this year has nothing to do with her affected side. (right side.) It has to do with her left hand.In the mainstream school that Frankie attends, they are teaching the students to write their names.Yes, in preschool! I panicked when I saw all the other kids writing their names so well. So, what did this Mama do? I darted to Barnes and Noble to try to find workbooks and things that I can do at home to help Frankie write her own name.I have several apps on her IPAD to help with handwriting as well.
The workbooks are helping and so are activities involving fine motor skills. I truly believe Frankie was born to be right handed but now she's having to use her left hand to draw,color,write, etc...Therefore, I think it's even more challenging for her to have the coordination to write with her less dominant hand. We are starting by tracing lines...next, we'll attempt to work on writing her name.It's funny, I find myself trying to jump to a goal so quickly.This is a prime example.I suppose it's partially due to peer pressure & social media pressure? I have to stop and tell myself...HEY, CHILL OUT! NOT ALL CHILDREN DEVELOP AT THE SAME TIME! I will add that I'm pretty stinkin' proud of her though for writing an F for Frankie a few weeks ago!
Private Physical Therapy has been going great except our angel, Jill (pictured below) retired a few weeks ago.She helped teach Frankie how to walk amongst many other things. She was our biggest advocate and assured us Frankie would learn how to walk without a walker, which was recommended by our Physiatrist. She was right! We are very sad to see her go,as you can see in Frankie's long face; but, we'll remain in touch with her indefinitely.
A couple of milestones we have made these last few months are climbing on a chair AND jumping!! We hope running is in the near future...I'm confident it is.We now have a new private PT, Amanda, who Frankie and I have known for a while. She has such a soft and sweet disposition....what a perfect match!
Frankie & Amanda
In OT, Frankie continues to work on grabbing things with her right hand. Weight bearing is very important too so we do a lot of activities where she has her right hand on the floor, and she reaches for toys with her left hand.(pictured above) We continue to do ESTIM at home to help activate the muscles in Frankie's right arm and she's been very tolerant...as long as she has play-doh to play with.
We are still blessed to have Catherine, our private OT working with Frankie.I praise her because it takes A LOT to be an occupational therapist. You have to have a lot of patience.A LOT! This past month we have worked on many things including side stepping and fun yoga poses.We recently painted an Easter egg on paper with righty. The fun never stops!
Francesca continues to get PT, OT and Speech at her IEP school weekly.She adores her therapists there.Unfortunately and fortunately, we were told that Frankie may not qualify for the IEP program next year. This means she will be mainstreamed 100% of the time during the school year. There will be a resource teacher assigned to her and she will be pulled out of class for PT, OT and Speech.I say this is fortunate because this proves there has been significant progress, but unfortunate because I still see a few developmental delays...I know we'll get there.
So, our journey continues. We are just riding the wave! We have our good days and we have our "blah" days, just like everyone else. Every day I choose to have a good day...it's my choice. If something is on the verge of bringing me down, I try to stay positive.I can't tell a fib though...it's been rough week seeing a lot of our progress disappear overnight. Frankie wants to chase Paco and play outside but her legs aren't allowing her to. It's frustrating.Growing pains are NO fun! Gotta keep our chin up...it WILL get better! I would now insert the WHIP IT song by Devo. =) Crack that whip!!!
