Lunch...

Wednesday, we had lunch with our beloved PT, at the bakery/deli that Carl recommended. We both had sandwiches that were good (but crazy ridiculously expensive). After lunch, she invited us over to her house, which turns out, was just half a mile down the road! She is awesome, have I mentioned that before? She took Faith outside and jumped her on the trampoline, let her drag all her kid's toys out of their toy bins, and generally get into trouble all around her house. She followed Faith around on her hands and knees almost the whole time! When it was time to go to therapy she asked if we would like to come back after therapy and play with her kids. So we did! It was lots of fun, the kids were so good to Faith. They shared their toys, read her stories and even diligently wiped her mouth when she drooled! They were just as attentive as their wonderful momma, they come by it honest. And they are such good kids!
I felt a little awkward because I didn't want her to feel like she was doing therapy for Faith when we just came over to spend time with her. I felt like we didn't get to sit down and chat much, but I did have a great time. I asked her about coming up to the house and she said she would love to and didn't mind the long drive. So if I can get my house cleaned up I think we will try to get them up to the house. It was a good time for all of us. I really hope that we can spend some more time with her and her family.

Some unbelievable news and 200....

OK my lovely friends out there in bloggie land! I am pretty sure I have some lurkers out there and after this post I sure hope that you will take some time to leave me a comment! First off, today is my two hundredth post, and I am exactly one month away from an anniversary of my blog. I know, I know, sooooo exciting!
Here is the big news! Drum rolls, please...

dum, dum, dum, dum, dum...

TODAY, FAITH STOOD UP!
YES, FOLKS, SHE STOOD UP!

She has been able to stand if someone put her into stand in her walker or held her up but she has never been able dissociate her legs, lift a leg into kneel and then stand up!
TODAY SHE DID...
with a little assistance in the form of a chair and a therapist to help her keep her balance. BUT, she did all the work! After six and a half years, I had almost resigned that she would never gain that skill, that we would always have to put her in those positions.
But once again, she proved me wrong!

It all started with her OT, trying to introduce some simple yoga moves and for some weird reason she seemed to pick right up on them, attempting about six moves! So she went with it and pulled out her yoga book. Her OT was performing the moves then saying "Faith do it" and she would try. So eventually, it came to a chair and a kneeling position. So D. did it and when it came to Faith's turn she sat on the chair to keep it upright and low and behold...
SHE DID IT, but she kept going into a stand!
(These pics are the actual first time standing for Faith, some aren't so good but I had to show you all anyway!)

Needless to say, we danced, we screamed, we cried, we acted like a bunch of fools as we celebrated a HUGE milestone that was a LONG time coming!

So, then she decided to get smart with us and attempt it using the tripod leg!
Little Miss Smarty Pants did it, with D. supporting her!

I felt like the Heavens were opening up and a chorus of angels were descending on our little therapy room! She did it, folks!


Today was a wonderful day for many reasons besides this amazing new skill but it would take me all night to write about it! Another post, another day.


Upon arrival at home, after a long day out, she went scooting over to her little wagon walker and I saw her trying to lift her leg up to a kneel position. She got to it a few times but both times she lost her balance and fell over but she wasn't about to stop! So she came walking on her knees over to me and lifted her leg, I slowly put out one finger to offer her some support and she reached out...
took my finger and STOOD UP!
I almost fainted right on the spot! She did it three more times before she got too tired and started whining like she was in some pain. So we stopped. I tell you, friends, there was no momma more happy or proud or amazed or joyous than me, today! Six years, people, we waited for this! SIX YEARS! Oh and one more small miracle, she crawled reciprocally today in therapy too, for the first time! She always has bunny hopped, but today, she was rockin' it and decided to start moving her legs and hands in the proper fashion! She was so proud of herself, re doing it over and over again to practice! Just when I try to accept how things are for her, she always knocks my socks off! What a day for a two hundred post! I will be posting a few more awesome things that happened today, in the next few days. Lots of good stuff!
Off to dance myself to bed and dream sweet dreams of my girl, running through a field of wildflowers!

Therapy and friends....

Faith's physical therapist is wonderful. She loves Faith so much and has bent over backwards to keep seeing her over the last year. In the fall she moved over to the main hospital to work fewer hours and she quit working at our therapy center. But she offered to continue to see Faith during her lunch hour on Wednesdays. So NICE! After Faith was out during her surgery, she came back to pool therapy, just doing Mondays to help out the center. So we had her two days instead of one! Then a few weeks ago she called me one night and tells me she is leaving all together. No more pool therapy, she was cutting back her hours to just work three days a week. I should mention that her oldest son was dxed on the autism spectrum this winter, at ten. So I know she has been under a lot of extra work, stress and changes. But again she offered to continue to see Faith on Wednesdays. I certainly did not want to lose her but I didn't want her to say she would just so that I wouldn't be upset. We talked for a long time and she said that she didn't realize how much she meant to our family. She said that she loved Faith so much and wanted to be part of her life. She also said that she often thinks of us on the weekends and wonders what we are doing and mentioned that she would like to spend some time with us outside therapy.
She is so sweet and I like her as a person too, not just a therapist. She is very down to Earth and tenderhearted and I really look foward to seeing her each week. We talk about our kids and she confides in me about all the stuff with her son. I have often thought that I would like to ask her to come have dinner with us one weekend but have never gotten up the courage to do it. I worry that it might cross some professional line for her and be weird or awkward if I asked. She did mention how she would like to come visit us in the country. So I have been re-thinking asking her and her family to come over. Today, I got a text message from her checking on me (she didn't know about our crazy trip in NC, yet) to see if I was hanging in with my mother. I thought that was so sweet and I feel like she is reaching out to us.I know that friendships can cloud professional relationships and I am understanding of those issues. So my question to all of you is...Is that crossing some line? Or should I should ask her?
I certainly don't want to make things weird for her or us but I feel like she is making an overture. Carl says we should invite their whole family one Saturday night for dinner and a movie or some board games.
( I know we are dorks, right?)

Retail Therapy....

Saturday, we took a trip to the grocery store after Faith had cookie sales and we got rained out.

I used to love going to the grocery but as Faith has gotten older and more mobile, it has become increasingly harder for me. She wants to roll around and get into things while I try to get the shopping done. It has gotten to the point where I have to bring someone else with me, usually, to keep her occupied..

But yesterday, we were in no big rush and the weather was yucky so we just wandered for about an hour and a half. Soon I noticed Faith exploring cantaloupes and I thought....Hey this is great FREE therapy...

So we let her roll around and touch things and feel things and pick up things. She had so much fun and so did we!

She really liked the milk and o.j. aisle because she had handles to grab...

The pet food aisle was also a big hit since there were cat and dog pictures on everything and animals are a big topic for Faith...

Her favorite aisle was the frozen foods because she has an unnatural obsession with doors. These doors were particularly hard for her since the handles were high up and they have that suction on them so she at first needed some help grabbing the handle. But then she finally got it on her own...She was so proud of herself!

She decided she liked this brand of chips...

I thought this was a great shot, she loved the ducky signs hanging in the baby department...
Then she found the floral department with all it's flowers and balloons...She went right to the Dora balloon but we settled for a free latex one from the floral dept. lady.

Proof that Faith has a temper....She got mad at me because I didn't tie the balloon on the right place...
She also enjoyed smelling all the flowers....The hyacinth was a favorite
(I guess because it had such a strong scent.)


So, next time you head out to the store maybe you can think of it as some free therapy for your kiddo...

It was so much fun!

LiteGait Jr.

Recently Faith's physical therapist has started using the LiteGait Jr gait trainer with her to assist her with building her strength back after surgery. She also is using it with Faith to help her maintain a straighter posture and get a better stretch on her legs as she is taking steps.

(photo courtesy of Mobility Research)

Faith has a bad tendency to walk by bending at the waist and leaning over that in turn make her gait funny. She lifts her legs at the hip instead of bending her knee and making a complete step by extending her legs forward, bending her knee and finishing the step. Kind of like British soldiers march.They have been using the LiteGait with the treadmill, as shown above. They put her in a harness that is suspended on a frame above the treadmill. This allows her to take steps without anyone holding her and allows her P.T. to physically help her step. At first it was very weird for Faith, using a treadmill. She didn't understand that she had to move her legs, so they would just drag behind her until someone moved them for her. But today, she started moving her legs responsively forward. It was great to see her standing straighter and getting a fuller range of motion in her legs as she stepped. She has been getting stronger since surgery but she still suffers with a LOT of tightness in her hip flexors and muscles in her upper calf. She has the look of tightness when she steps especially on that left leg, like she can't extend her leg all the way forward or back when she is standing. It pains me to see her with this problems since she has come so far with her surgery. I have posted a link to the website for LiteGait above with some videos of children and adults using it. I will have to post a video of Faith when I can remember some batteries for the camera. Today she walked for 8 minutes for a total of 226 feet! That's a long way, really! I am so excited about her working with this tool!

Play therapy....

I took a page from Dr. Boucher's suggestion on her blog titled...
Messy Therapy

So we got a container of Chocolate Cool Whip and let Faith have at it! I chose the chocolate because she responds well to stronger flavors. Needless to say, it was a MESS! But she had a blast!

We got out spoons and NUK brushes and bowls....
I loved seeing her put the spoons and cool whip in her mouth...

She thought it was the funniest thing ever, making a BIG mess all over the table and floor and chair and herself....

She pretended to color with her hands and with her utensils....

Then she got the NUK brush stuck in her mouth and couldn't figure out where it went...

She also did some throwing (not my favorite part!) leaving me a bigger mess on the floor to clean up....She seemed to like the feeling of the cool whip because when she had obliterated a pile of it she would sign "more" for another pile....

Then she decided to make it a full body mess and lie down in it....see arms, hair, face, clothes....

All in all totally worth the $.50 for the cool whip....but I sure wish I could find someone willing to clean up the mess!

Stories...

Today, at therapy, I was approached by the head therapist. She asked me if I would be willing to write Faith's story with a focus on our experience with our therapy group. It seems that the head of the hospital is going to be speaking at a conference and wanted to have a few stories to share with them about families experiences with PTW. I was touched and honored. In the last few years we have often been asked to be subjects in photo shoots for the annual Camellia Ball (fundraiser for PTW) and also representatives at the ball. I enjoy doing this sort of thing because it gives me a chance to talk about Faith and our experiences. I am not normally a speaker or writer but when you are living with a force like Faith, you are infused with a passion that overcomes fear. I am excited about the opportunity and hoping that it will get some recognition focused on our therapists and their office. I leave you with photos from P.T., today, with Faith standing and reaching (A big deal!) I love how excited her therapist is!

A day in the life of........ M-O-M

This morning I hit the phone hard, before therapy. Trying to get a decent appointment for Faith at the epilepsy appointment, trying to reschedule a crappy appointment at Shriner's and get new decompression tubes for our new G tube...all of this before our first therapy at 10 am! Shriner's weren't at the phones...on to pediatrician, girl helping us was late today, so no luck there....decompression tubes ready, just drive an hour to pick them up (btw...I forgot to pick them up!)! About 10 am, we get a call from MUSC with an acceptable appointment....YES! Call ped's office to let them know...get to therapy...lunch with daddy...then on to our next therapy, an hour away! When my feet finally hit the front door of our house at 4:30, I still had to call Shriner's. So I put in the call and BAM, I hit the brick wall of the day! Our surgeon/doctor is only seeing CP patients on Wed from 12-3 pm. Which is our current therapy schedule. I hate to miss therapy b/c we have missed so much in the past few months, not to mention we now have to cancel on the 20th for the epilepsy center! The girl running the appointment desk was no help! She wouldn't work with me for anything until late March! So much for our 4 week follow up! I had to settle for an appointment with a doctor we've never met at the end of the month during a scoliosis clinic! Just a funny comment she made about what an important man said doctor is and how busy he is that he doesn't have time to see the CP kids any other times! I almost fell in the floor! I bet I could give Mr. Busy Man a run for his money!

A busy week..And Contest Winner...

After starting back to some of our therapies, last week, I am forced back into full swing! This week we start off with OT- Monday, Phyc. Eval for Life time eligibility at DDSN-Tues., Speech-Wed., Shriner's (casts off for the first time) as well as Early Intervention Christmas party-Thur. and SO FAR free day on Fri.! Mind you most of these places are at least 30 min. away some over an hour! We took Faith's splints off, the other night, to have a closer look at her legs and heels. She was incredibly stiff in her knees, I can't imagine why! But she did allow me to bend her knees a few times. She has developed a small red spot on her right heel, the worst offender for pressure wounds. So, I removed the ace bandage and fill in piece, covering her heel. It's still there today, but doesn't seem any worse. If we can just make it to Thurs.....I am very curious to see her legs and feet when they get this set of casts off. We haven't seen her legs since the surgery and curiosity is getting the better of me. I want to see how bad the incisions are and what kind of scarring she is going to have. I know her little feet were messed up b/c of all the spastic muscles but they were perfectly sweet and adorable. Now, I know they are going to be all scarred up, forever. I know it's silly but I can't forget about it. All of her other scars are covered by her hair on her head or her shirt but these will be quite obvious. Oh well, if she can get to walking, that's all that matters. She is perfect, no matter the scars....

One more thought, only a mother of a special child will understand me when I say I just love this picture of her with that little bit of drool on her chin. I know it's weird but it's Faith!

Also, I know I have been slack about announcing a winner in the Miracle Veteran contest... Forgive me but the surgery really got me spinning... Anyway, the WINNER is...

AMBER, from Tales of the Baker Bunch! Amber, email me your mailing address and I will get your sign out to you, asap!

Not again...

So Friday, I got a call from our PT, our new PT. We have only been with her since May. She is so sweet and genuinely cares about Faith. Just when we finally feel like we are hitting our stride, together, BAM, she calls and tells me she is leaving our therapy center. I was heartbroken when I heard the message from her, I knew it wasn't good news. So I called her back and she delivered the bad news.
After several minutes of discussion about our options she makes the kindest gesture. She offers to talk to her new boss over at the main hosp. where she will be working and her "old boss" at our therapy center to see if they would allow her to come over once per week and treat Faith during her lunch break. How touching. We truly love her and will be so sad if they say no, but I wasn't passing on that offer! I know that it would be a burden for her to do that for us, but we have been through 3 therapist in the last 1 yr and 4 months.
The therapy center has gone through a lot of changes in the last yr and a lot of therapists, too. I am so tired of switching around, it's hard to connect w/ a new therapist, deal with equipment needs, finding ways to connect with Faith, preparing for surgeries. Then they leave! It stinks! I really hope that they will allow her to continue working with Faith but I don't know what we will do if she can't, the options are slim and slimmer still b/c of our scheduling needs. We have to drive over an hr, one way and we see her speech therapist on this one day. So we need someone who can work w/ us at lunch or just after it. Otherwise, it would mean a third trip to Anderson each week, which I can't do!
There is another therapist there, who is supposed to be really good and isn't having anymore kids of her own. But I have heard that she is really hard to get and everyone wants to get her when she has an opening. I guess I should try to talk to her this week, just as a back up plan.

Therapy Day

Ah, therapy! Wed. are our major therapy days. Faith did really good in speech, today. She used to never try to make sounds in speech. It was like "pulling teeth"! Today, she had probably her best day ever! She tried to imitate most of what her therapist asked her to. She also is doing pretty darn good with her Sounds In Motion program, trying to make the signs with the sounds. I was sooo proud of her; then we got to physical therapy. We have a new p.t., and Faith is giving her all kinds of trouble. She wouldn't let anyone touch her feet or legs or arms, w/o going stiff as a board and holding her breath! I felt so bad for our p.t.. I suspect Faith has been going through this stubborn faze for a few months. And it just happens to be getting worse when we get a new pt! She doesn't like anyone to try to make her do any thing that feels weird or is out of her comfort zone. She has been bunny hopping for almost 3 years and as far as she is concerned that is the ONLY method of transportation! SO that means no transitions, no scooting, no weight bearing on feet or otherwise. And may God help you if you try to make her. She turns into "Boardgirl", stiff as one, you can't move her or get her to even sit up. I know it's hard and uncomfortable, I just don't know how to break through. We try toys, mirrors, bubbles, stuffed animals and nothing works!
Who Knows? KIDS!!!! When I got home I just wanted to fall over and not move all night!
Oh, wait I have to do this all over again next week????!!!!!!!!!! GOOD GRIEF!!!!!!!!!!!!!!!