Wednesday, June 30, 2010

My new finds....

Took a trip to the Education Shack today, they were open all week with several new shipments.
I know this doesn't do it for everyone, but I was so excited! This place is a wonderland of boxes of all kinds of therapy and educational equipment and materials. Really they don't even know what they have or what it's for. I had two HUGE deals I found today...

We have been using these recorders in therapy with Faith for a while. They are little handheld recordable switches that fit perfectly in a child's hand. Our therapist suggested investing in one or two to use at home. At around $13 a piece, not bad for a primitive AAC device but I hadn't forked over the money for one. So while scrounging around in random boxes, today, I found one lying right in the bottom of the box! I was on cloud nine, so I asked a few employees if they had seen anymore and they said they had seen a few boxes of them but couldn't remember where. So we dug around and came up with 7! SCORE! I asked how much and the cashier says "I'll give them to you for $1 each." SOLD! Faith has been hauling them around all afternoon, I programmed one to say "Hi" and whenever someone would come thru the door at therapy she would press that button! She was so proud of herself.

My other cool find was this adapted walking sheep! We use adapted electronic toys with switches a lot with Faith and over the last few weeks her therapist loaned us a bubble machine with a small switch and a delayed response device. Got this little sheep that was already rigged to be plugged into a switch for $5! I had just brought home two books about sheep so we worked them together this evening while we read.
Found a few other steals...a bunch of Crayola washable markers in different color combinations for a $1 a pack, a 25# box of white sand for her sensory table- $5, a little plain apron to decorate while we work on letter A stuff-$1 and a decorate yourself pencil box-$1. I also saw a platform swing for $40, which I am told is a pretty sweet deal (soooo tempted) and they said they had a bunch of those canopy/bag swings at their other store for practically nothing!

I get a BIG rush finding good deals, so I walked around all day with a big smile on my face. I am so tempted to go back later this week when their new truck comes in. I think Carl would strangle me, though!

Tuesday, June 29, 2010

Beeeeeeees....

Last Thursday, Faith got to go to the library presentation on bees. A husband and wife who keep bees spoke to the children. There were only about 7 kids, this time, so it was not so distracting for Faith. They started off having the kids pretend to be bees. They sprinkled dried chick peas on the floor and the kids were supposed to pick them up (like pollen) and work the bee hive to make honey. Faith had a lot of fun, I picked them up but let her carry them to the bowl, then she got to stir the bowl. Finally the kids got to taste some of the honey on spoons. Faith had never tasted honey and she really liked it!

The couple showed the various equipment and tools used in bee keeping and had some of the kids model the protective gear. They also brought a small hive to show, Faith was particularly interested in the bees, themselves. She liked the buzzing noise they made and sat very still listening. While we were there we met a little boy who was in self contained class at the local elementary school. He was very shy but eventually warmed up to Faith because she kept trying to get his attention going...."Heh....Heh...Heh!" and waving her hand at him. It was so cute! My little social butterfly!
One really cool new thing she did was when the man asked some questions for the kids to answer...they all raised their hands and after a few times Faith did it too! She was doing just like the kids....leaning forward with her hand outstretched like..."Pick me, Pick me!"

On our way out we checked out some more books...she's now up to 140 books for the month of June! Pretty proud of her....(even if I do all the reading! LOL!) Really I am just kidding...I love reading to her and she is so interested in all books!

Saturday, June 26, 2010

Parent perspective....

As a stay at home mom of a EXTRA special little girl, I know that my perspective of things is a lot different than my hubby's. He has a job that he goes to everyday, friends he works with, people he deals with. Much like "normal" people. I, on the other hand, spend 99.9% of my life with a six year old little girl who can barely talk and understands only simple things in life. My concerns are...is she safe, is she happy, am I setting a good example for her, am I leading her on the right path, am I providing her with the right stimulation/learning experiences, did I spend enough time stretching her. Not the things that most people worry about.
My life is consumed...but I am NOT complaining. It's my responsibility! I am OK with it.
But for Carl it's different. He sees himself as other things besides the dad of a special needs child. He still wants to go do things that we used to do before she was born. Hiking, camping, overnights at the beach, swimming at the lake until late at night.
It's hard for him to NOT be able to go do those things. He is a GOOD sport, believe me, but sometimes I can see him wearing down under the monotony of our days.
I do miss those things, but I don't ache to do them like he does. So this weekend, he has gone camping with his best friend from school and his little boy. They are planning to do some fishing, something that Carl really misses.
I am happy that he is getting out and having carefree fun...but I miss him and worry about all kinds of potential problems. I hope this gives him a little boost and gets him refreshed to come back to life.

Wednesday, June 23, 2010

Tie Dye Fun...

Last Thursday, our local library had Tie Dye Day. The kids were invited to bring a t shirt or something white that they could dye....er....destroy!
Faith took a pillow case to color. First they made book marks out of foam stickers and glue...Faith was all about the glue and made a BIG mess all over her wheelchair and lap! I purposely dressed her in clothes that wouldn't be destroyed by dye but wasn't prepared for a glue war. She chose pink and teal to use and we were very conservative with the colors. Some of the other kids made a HUGE mess that dripped down onto the floor where the plastic had been moved under the table by all the kid feet. I felt so bad for the poor librarian. When we got home I put out the pillow case on the back porch to dry and it was totally dry in one hour! That's how hot it is here! Faith dragged her artwork all over the house for the rest of the night, she was so proud of it. This Thursday a bee keeper is bringing some of his bees and doing a presentation. Hey, I can't complain about the library doing some of my homeschooling work for me, can I?
?

Monday, June 21, 2010

Not enough hours in the week...

Since we started homeschooling with Faith at the beginning of the month, I have had so little time to sit down and blog. I have been trying to keep up with everyone out in bloggie land but that's about all I can do, lately! I have been going from about 7 am til around 9 or 10 at night. Good news is we have 14 days under our belt, now. My goal is to have at least 40 days by the time public schools go back to school, so I can keep ahead. Faith is having lots of fun with "school" although it's just an amped up version of what we have done for years. We have spent HOURS reading. HOURS, people! Like over an hour almost every day! We have already read 115 books since the first of the month! I think we have logged about 10 hours of reading time since two Fridays ago. I have found out that my evenings are now my only time to get all the housework done. Well, at least most of the housework done! HE HE HE! If anyone has some extra prayer space could you remember me and pray for strength and fortitude?

Monday, June 14, 2010

Things I can't live without...


video

Here are some of my new favorite gadgets that we can't live without, here in our house. Don't know how we ever lived without them. This was my greatest new find at the Education Shack that I talked about a few weeks ago. An activity table for water, sand, beans and the like. I always wished for something like this for Faith but they are ridiculously expensive! Found this, last Saturday, for.... $20, people! I was soooo stoked! She has been spending hours playing at this thing. It is the perfect height for her to stand on her knees and she will stay there forever. We have been putting little people animals in there and when she picks them up we say what they are. This is her favorite new toy and it's so cute to see her go into her playroom and stand there going "peeeeeeeese" for me to bring it into the kitchen and put water in it. Freakin' darling! I looked it up on the computer and the cheapest place I found it was $80! Score!

Her other new piece of wonderful-ness is her activity chair. Here in SC we have an organization called Family Connections that pairs parents of special needs kids together with other parents of similar kids. They keep a loaner closet (house) that parents can come and borrow/use equipment that people have outgrown/donated. It's a wonderland of old, new, crazy equipment from the last 20 years! I have been on a hunt for a chair with a tray that we could use for h.s.ing but no luck for two months. So I put in a call and went over a week ago, they said they didn't think they had anything that Faith could fit into but we went into the building outside and right there in the front was this perfect activity chair! It fits her perfect and she LOVES it, asking daily to get into it. I love it because it's adjustable, has a tray, an abductor pad and a seat belt. It was exactly what I was wanting. And I get to keep it as long as she needs it! Who could ask for anything better?

This last one is the wonderful gift from our new friends, T and his momma. (Don't ya love our cat, thinkin' she can get a ride?) This is called a Kaye wagon walker and it is the apple of Faith's eye! I know it's as old as the hills but it's in perfect shape. She had been using one of those baby push walkers to get around at home but it was way too small for her. This bad boy is made for bigger kids and adjusts! The family who gave it to us had replaced the front wheels with casters for easier turning and when we got it we moved the hand bar back because she was getting stuck in the middle. I have had my toes run over so many times, I think they are all broken! She loves the basket in the front and gives all her precious belongings...babies, books, hello kitties, bottles even her baby cousin the other night...rides everyday!

The girl likes PICKLES!


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It all started with lunch, last week with Faith's PT. We had sandwiches that came with a pickle spear. I didn't have anything for Faith to eat so I offered her the spear, just to see what she would do. SHE LOVED IT! She ate both mine and her PT's! So this weekend I went out and got her own jar of whole baby pickles, thinking she could hold them easier. She has eaten pickles every night since! It cracks me up because I HATE pickles...hate them...hate the smell...everything about them! BUT she loves them! Tonight she had three, biting them all the way to the end. She isn't swallowing the pickle itself, she spits it out but she is swallowing juice. I have seen her swallowing. It is such a big step in the right direction...chewing and biting....things I never thought I would see her do. It seems like she responds better to things with very strong flavors...spicy foods, pickles, peppery foods, sour candies. Stuff I could never eat until I was an adult. Some of her therapists and specialists who have treated her said that kids like Faith often do better with strong tasting foods...something about it triggering a bigger reaction or something. Who knows...who cares? I think Vlasik needs to star Faith in their next commercial...with a crunch like that she could sell some pickles, I bet!

Saturday, June 12, 2010

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.


Thursday, June 10, 2010

Reptiles....

On Monday, we got to go to the Reptile show in our town. I was excited to take Faith to let her get up close to some unusual animals. I grew up with all kinds of critters like these so NO we aren't scared of snakes, here, in the Hudson house. When we came into the building, the gentleman who was doing the show came right up to Faith and started talking to her. Turns out he retired several years ago from our local residential facility for adults with disabilities, where Faith goes for one of her therapies! He worked there for 27 years! He put us right up in the front row so Faith could see all the animals!

He was so nice and when he started bringing some of his animals around for the kids to touch, every single time he started right with Faith! The first animal he brought her was a huge iguana that he put right in her lap! She was totally excited! Then he brought her a python...
Faith was very interested but she had a hard time sitting still during the times he was talking, she got bored, so I had to do a lot to get her attention.
Then he brought her a HUGE albino python and she tried to grab a big chunk out of the poor snake!
And finally she got to touch an American alligator, which she really liked!


We both had a lot of fun, I could have listened to him speak all day. We got to see about 20 different species of snakes, turtles, alligators and other reptiles. It turns out that this gentleman was retiring from his rescue/business this week, it was one of his last shows. And all these things fell into place that we went to the library at that day at that time and just before the show started, then to meet this man, days before retiring who worked with special needs people for years! It was a perfect day with Faith standing, getting her library card and this wonderful man!

Tuesday, June 8, 2010

Another childhood milestone...

Yesterday, was a wonderful day in more ways than one. After all the excitement of therapies, we headed to the library to get Faith her first library card!

Our library is tiny, I mean really tiny, like about 5 rows including the side walls! The librarian was so nice she gave us the paperwork to fill out and once it was done I let Faith hand it to her.

And here we are, Faith's first library card! All grown up, she is! She chose four books about horses, a book about guide dogs and three videos about horses and zoo animals.

While we were checking out when the librarian told us that they were having a reptile exhibit show in the community building, next door. So off we went to check it out...
More on that tomorrow.
Faith was so proud of her books in her little book bag, she carried it out to the car (see, Dr. Boucher, we remember what you said about carrying stuff!). Of course, five books doesn't go very far in this house. I started keeping a log of all the books we read and in 5 days there were thirty books! So we read all of them last night, LOL, I guess we will be visiting pretty often!

Monday, June 7, 2010

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!


Thursday, June 3, 2010

Hummus, anyone?????

Here is my lovely girl enjoying some of our "hard, homeschool work" with self feeding! One of our major goals for her, of course, is to eat by mouth as much as possible. So today, after a trip to the store and a big jar of hummus, she sat in her (new to us) activity chair while I did dishes and laughed and spilled stuff and made a big mess! She used her NUK brush to dip it and then her fingers/fists to smear it all over her face and hair! She figured out if she made a big to do about putting it in her mouth I would dance around the kitchen like an idiot! So I snagged lots of good pictures of her laughing at my stupidity.
Who knew Hummus could be so much fun? She sat there for a good hour and a half without complaint and enjoyed a little of the exotic....

Wednesday, June 2, 2010

Six months post-op....

Today, was Faith's six month follow up from her gastrocs surgery at Shriners.
We had an incredibly busy day...8 am Shriners, 1pm double therapy and 2:45pm meeting at supply closet. So we got to Shriners early with a letter in hand from our PT, discussing our current concerns about her orthopedic issues. We have seen a new crouched gait in the last month (where as before her surgery, she was hyper extending her knees) as well as some changes in her pelvis alignment in turn affecting her gait, creating a "windswept" step. Also we had seem quite a bit of muscle atrophy in her lower calf, just where her braces start. You could see and feel a distinct line where they started and the muscles went from normal feeling to very soft. So first off, they got us in with the PT to have a look at her structure and how she was walking and all the good stuff. She told me that Faith's crouching was a result of the new range of motion in her ankles and calves as well as shortening of the muscles around her hips. Although no one wants her to walk crouched, crouched is better than hyper extention. She also said it was a functional gait for her that also provided her with a measure of stability. She was not worried about the tibial rotation that we were concerned about because she said that it was coming from her pelvis also not her leg. She did say that Faith had Patella Alta- where her patella (knee cap) rides too high in her knee area from the muscles pulling. Apparently very common in kids with CP, but yet another issue that I had never heard of or even thought of!
Of course, after all our concerns and worry and all the effort our PT went to to send a letter... Faith did almost none of those things while we were there! Actually, she made a BIG FAT LIAR out of me! When they asked me to put her in her walker, she walked out into the hall and proceeded to walk up and down the hall for over half an hour...until the doctor finally came to see us! She had never walked that far or that long...EVER! I stopped briefly to chat with a nurse we knew and in about 30 seconds, she had made it to the double doors at the end of the hall about 50 feet away! She walked straight without pulling to one side and she did not do her soldier march that she usually does! I know, I know, A LIAR!
All in all, they seems thrilled and very happy with her progress. They gave us the go ahead to take her braces off at night as well as her knee immobilizers and to take them off during therapy! WOOOOPEEEEE! As well as taking them off when she is playing in the floor. They said she needs to stay in them about 80% of the time now...(although, I can't figure out how keeping them off for therapy, play on the floor and sleep equals anything less than 80%) but I guess we will figure it out! We went to therapy afterwards and started right away with working with no braces. They told me today that the next six months need to be muscle building time. And you can tell she needs it when those braces come off. She is soooo weak.
So tonight our girl went "commando" no braces no knee immobilizers...just SOCKS!

FYI: for those of you who gave me all the good advice about inviting our PT over, I made a preliminary move and invited her to lunch, next week. She seemed really excited and asked how early we should meet so we would have time to talk before we went to therapy! LOL! So we are going to a local dessert/sandwich deli that Carl says is really good. Can't wait! She is so wonderful! She got lots of compliments from the folks at Shriners for her dedication and commitment to Faith! WHOOOOOO, E, we sure do love you!