Christmas Pictures...

Christmas was a crazy day, dealing with aftermath of the fire, my sister and her family, my father and my step father. All of our original plans and traditions were thrown out the window... I was coerced into making Christmas dinner for everyone, which is not on my top 10 list! I don't mind doing it for a few folks but I am not the hostess type. I get so stressed out and worry my head off. The fire dept donated funds for me to put together Christmas dinner, so I felt obligated to do so. We had our house filled up with people and it was mayhem! Trash, toys and toddlers running a muck! It didn't really feel like Christmas. Faith did enjoy her gifts...I think her favorite was the $1.00 horse calender from Dollar Tree. She has carted that thing everywhere! LOL! But she also enjoyed the dvd player for the car! She is now excited to get in the car and go. Compared to her recent struggling and fighting to be put in her car seat. She is now thrilled to go! She has been rolling down the road to Veggie Tales, Baby Einstein and animal dvd's. Which reminds me... I need to hit the thrift stores for some more! I can barely stand them after 2 or 3 times!

Now I am trying to prepare for Faith's 6th birthday party, coming up on Saturday. It is always way to close to Christmas and sneaks up on me every year, despite my best efforts! We do it up big every year, as a way to get everyone together and show our appreciation for all the support we have received and to celebrate Faith making it thru another year! Well, this year, I just don't have it together. One heck of a week coming up.....

tests and other junk...

I feel so slack, the last week, I have hardly posted at all! It has been more than chaotic around here! I barely remember having Christmas! There has been so much mayhem and unrest around here, I feel like I am barely hanging on. It has been so sad to see my step dad dealing with all the loss and destruction and then Christmas and all on top! It just breaks your heart.
On top of all that we have been trying to get some answers with Faith's seizures. She had her MRI on Fri the 18th and per the Neurologist, her tumor seems about the same- no significant changes. Today, she had her EEG. It was a sleep deprived one, so we all only got about 5 hrs of sleep, then therapy, then an hour + drive to the EEG, then home. We were gone for 11 hours, today! We were able to meet with the doctor, after her test, to hear what they found. Of course, we knew that it would be abnormal- always have been.
But he did say no significant changes, which is good. He did tell us some different things that we haven't heard before. He said that there were a lot of misfiring going on in the back of both sides of her brain and that there was a lot of increased misfiring when she was drowsy- going to or just waking from sleep. I don't know why I hadn't really considered it before but it makes sense, since most of her seizures occur in the very early morning hours- around 3-7 am. He had said, last week, that some children have increased seizures as their brain matures, as they age. So I asked if they better when they get older. Of course, I didn't get a straight answer. Just generalizations, some do some don't. He said that, as we knew, that children who are compromised, neurologically and have a lot of abnormalities are just prone to these problems. That there is no medicine that is 100% that nothing will fix what is happening in her brain. Of course, we knew all of this, already. It's just frustrating.... We just know so little about the brain and especially hers and what exactly is going on and what exactly did happen and why. I just live with so much anxiety about the seizures. I always feel like I am on high alert! I don't know how I am supposed to live like this. I have read a lot about seizures and done a good bit of research but it doesn't really make me feel better. And our conversation with good ole' Neurologist of the year, didn't do much in that department...We did go up on her Tegretol levels, even though we are still waiting for her last blood level check. My feeling is that, before long she is going to max out her levels and we will be forced to delve into other medications.

Merry Christmas to all my blog friends..

TO ALL MY WONDERFUL FRIENDS OUT THERE IN BLOGGIE LAND....

MERRY CHRISTMAS AND MAY YOU HAVE A WONDERFUL HOLIDAY AND NEW YEAR!

Remember to bless your children and family. May GOD bless you all! I am so blessed to know each and every one of you and I pray that you and your children and families are all safe and happy!

With Love,
Candace

Outpouring of support.....

Over the last day, we have all been in shock and overwhelm. The house was a total loss, the only thing left standing was the chimney and a short wall that was all but gutted. Thank GOD, the community has poured out a tremendous shower of supplies, clothes, necessities and money for the five of them. The outpouring is actually overwhelming! My cell was ringing all day, even into therapy and when I arrived home there were tons of messages on the machine. The churches, friends of ours, individuals who heard on the radio. They opened the doors of the Picket Post fire department to donations of all kinds, today. I have to give a HUGE shout out to Joanne Heaton, the fire chief's wife, who has been coordinating and organizing everything for them! She is a saint among saints. An observant, caring, diligent, sensitive woman who has been nothing but wonderful. She has been hitting up the local business' for donations, hotel time, tools and food! Thank you, Joanne, wherever you are! William, my step dad, got home last night and surveyed the damage and it was so heartbreaking. He lost everything including his lively hood, his tools, which he used to work construction and make furniture. So we are hoping that a few business' will donate some essential tools so that he can at least work to earn some money. The local storage building place in our town donated 2 months rent on a storage building so that we can store the donated items until they find places to move into. I am praying that my sister uses this chance to pull her self and family up and make a change in their lives. IE: jobs, car, house etc. I thought that we had seen support from our community with Faith but this has been unbelievable! Everyone has pitched in. A local cartoon artist saw them at the store and pulled money right out of his wallet and handed it to my step dad! Strangers have been showing up at the hotel donating money for their stay. PRAISE THE LORD! I am so thankful and I pray that they can all get on their feet ASAP! Please pray for them...it would mean so much to me. Their names are Monica and Jason and my step dad is William.

FIRE....

This morning, I awoke to a hysterical phone call at 4:30am. My stepfather's house caught fire and burned to the ground. My sister and her children and husband were home but not my step dad. They barely escaped with their lives. Her husband woke to the fire alarms going off and within minutes the roof was collapsing on the house. They made it out and they are all ok but there is nothing left. The only thing standing was the chimney. It was terrible, when I pulled in the drive, flames were shooting 50 feet into the air and the trees were on fire. My brother in law had to drag my sister out of the house because she was trying to go back for the Christmas presents. She got some burns on her hands and foot but she is ok. It was such a terrible sight to see. My step dad lost everything..they lost everything. Thankfully our community has reached out to them and lots of people are offering baby clothes and gifts for the children on Christmas. They are being put up in a hotel for 3 days but I don't know what they are going to do. We had a house fire as children but it was contained to the attic but that was so traumatic for us. I can't imagine....they were all minutes from losing their lives. Baby A. was sleeping in a baby swing and part of his swing was melted. He was that close! Please keep my sister and her family and my step dad in your prayers over the holidays.

My Christmas TOP 10....

My grandmother (Bamboo) always loved Christmas...things just haven't been the same since she passed 6 yrs ago. Christmas' just don't have that same spark. She was the glue that held us all together. But I still hold on to many of her family traditions that she passed on to me.

1. Bring out your treasured ornaments every year and discuss who gave them, when they gave them or where you found them. Even when everyone knows all the stories and all the ornaments! (I probably have more of my grandmother's on my tree than my own but I can tell a lot of stories about them!)

2. Be THANKFUL: BE GRACIOUS!

3. Stay up late on Christmas eve, wrapping even the stocking stuffers: ie: chewing gum, socks, bags of candy, little notepads etc. (actually this was a dual ritual for Bamboo and her sister, my great Aunt Francis!)

4. Everyone gets to open one small present on Christmas eve! So fun... we usually buy a gift just for that night, something small. But she enjoyed it so much...we would light the fire and roast marshmallows and string popcorn...

5. Treasure handmade gifts....This is MY FAVORITE ONE... my Bamboo always loved the gifts and ornament that her grand kids, schoolkids and neighbors made. These were prized tokens that received honored places in her home and now in ours. Every yr, we have Faith make her gifts to each other and we treasure these above all others....play dough hand prints....LOVE THEM!

6. Daddy gets the biggest stocking! While Carl's is not as big as my grandfather's (HUGE!) Daddy still gets the honored stocking. Just a special thing for the patriarch of the family! LOL! And we fill them with silly stuff ie: wrapped chewing gum....

7. This one is going to be controversial... but my Bamboo and Daddy Bob never told their children that there was a Santa Clause. She said that she couldn't lie to them, in good conscience. She never put presents under the tree "from Santa"...We have continued this tradition with Faith. We want her to know to the best of her ability that Jesus is the REASON for Christmas and not be swayed by by the Santa idea. We also want her to know that Mommy and Daddy work hard to give her a gift b/c we love her and that she is not entitled to gifts. Sorry Santa supporters....no harm meant!

8. Enjoy your family...Treasure them...This is the most important one. Give of yourself to your loved ones and others. While I am working on this...my grandmother never seemed to sleep during the holidays. She was always decorating, shopping, wrapping, giving of herself to others....
9. Save your wrapping paper...used and unused! This is such a funny one! I will admit that I have wrapping paper, I am using this year that belonged to my grandmother when I lived with her... over 13 years ago. Some of it I bought! We unrolled one, tonight, that must be 15 yrs old! I have really carried this one too far! I don't think I have bought a roll of paper in 7 or 8 yrs! I also save all the bags we get at Christmas and reuse them, unashamed! I still have probably 15 rolls from her house!

10. Always read the Christmas Story...before opening presents...everyone together...everyone listening. This is such a special time for me...I still see Bamboo honoring Carl for the first time with a request to read the Bible for the family. Now it is his official "Paternal" responsibility which he wears with pride. We both always share a silent, warm smile with each other as we remember what God did for all of us and for the memories that my Bamboo passed on to us.

HELP...I need somebody....HELP!

The past 2 days have been very rocky, in the Hudson house. Yesterday was my birthday...YES...the big 3-2! I know, I know! Carl had asked off that day b/c we had the neuro appointment. Well, first of all we had a very busy day and had plans to get up and leave the house by 7:30 am. We woke at 7:45am, overslept that's to HUBBY! Then amidst out rush to get out the door, Faith had another seizure. Her second in the last week. Now these really worry me b/c of her tumor. We have been trying to space out the MRI's but we just can't seem to do it. Anyway, I had my list all ready to grill the neurologist but when he came in the room, I just fell apart. I cried like a baby....about everything. I knew I was falling down that crying hole when we were waiting in the room, I could feel it coming, but I tried to hold it in. TRIED, being the operative word. So I looked like a basket case and everything pretty much went out the window from there. I told him I was so worn out from worrying about her seizures and he said...."Well, isn't that what we do as parents..Worry about our kids?" YES, folks, he actually said that to me! So nothing went like I was hoping. He agreed to a repeat EEG, MRI and Tegretol levels, though. He also said "Well, her seizures have never been under good control." So don't you think this should be a priority? They have continued to get worse and it is interrupting our lives! So, they scheduled the EEG for next Monday the 28th and promised to call with an MRI appt. We got the call about 3 pm with an appt for today! The same day as our big Shriner's appt! We couldn't say no b/c they had pulled strings to get us in (despite me telling them I COULD NOT do Friday!) So we had to go in to Shriner's early. We got the casts off for good! WONDERFUL! Her feet look great...NO inpatient rehab...FANTASTIC! The only down side is she has to wear her splints every night for 6 months! We were hoping for 3 or 4 but I guess we can live with it. Then off to the MRI, which was another Battle Royale! Confusion about appt. and feeding. Which set me off seriously! I told the nurse I was talking to "don't speak to me like I am a moron!" Carl almost fell on the floor laughing at me! I was so upset, but we did get things worked out and the MRI. So now we wait...maybe a week maybe just a few days. I don't know yet. Hopefully we will not get any bad news before Christmas. I am holding out for that. I had leftover pizza and chicken noodle soup for my birthday dinner. LOL! That's all I can do. Nothing has been going right lately. I have been trying to get this present ready that no matter how hard I try or how many trips I make something goes wrong! ARGGGG. I need some positive thoughts!!!

Talking....

This year has been a year of many firsts for Faith. I have discussed many of them in previous posts, so I won't bore you all with all of them. But this year has been our YEAR for TALKING. Faith was always quiet, she would make sounds but very few attempts to make words. Then she started signing, last year. Now in the last 5 months, she has begun to try to talk. Today was Speech therapy- we have a wonderful ST, Karen, for about the last 3 1/2 yrs. She is smart and no nonsense with Faith. She doesn't let her get away with anything! LOL! I love her so much! Anyway, Karen has been working with Faith on speaking, of course, but also mixing in some food things (candy) too. So today, she had candy canes and books. She was working on -ing words, Faith's favorite things to mimic and getting her to say candy cane and Karen and Faith. We have been trying to get her to say her name for such a long time with little success. Today we got candy cane, Karen and -aith! She tried them all at therapy and then for Daddy, at home! Of course, they are far from perfect but they are all perfect to me! She was so proud of herself and so were we all! This is such a milestone because, to me, it was something that I had just come to accept-that she wasn't going to talk. Not that I was thrilled about it, but I had just learned to live with it and we had developed our own way of communicating that seems to work. Lately, I have been hearing her trying to say Christmas, when she hears it on the radio or tv! BIG, people! She is trying so hard but there are still lots of people pushing for Aud. Com. devices. I have mixed feelings about them. I can see their benefits but they all seem so awkward. One of our therapists said that a lot of kids like her do end up being able to say SOME words and using signs, too but still need Aud. Com for communicating in the outside world. I can see that, really I can. But I am beginning to have hope that she will talk after all.

Ok I need some advice...

I found this awesome woman on Ebay who makes picture pendants out of Scrabble tiles...They are awesome! She advertises her tiles with a picture of a little boy and a quote that says "I love someone with autism"- They are freakin' darling! Her name is Trina and she was so kind as to work with me on a picture of Faith with a quote saying "I love someone with cerebral palsy". She made several to choose from but I CANNOT decide! I am asking all my readers to pick their favorite and leave a comment saying which one they like the best. I am numbering them from 1 to 7 starting with the first one, so just say what number you like! I hope that everyone else is as enamored with them as I am and maybe go check Trina's site out. She can make all different pictures and different quotes. She is so nice and her prices are VERY reasonable! Her business' name is CURLZ-N- SWIRLZ (at http://myworld.ebay.com/curlz-n_swirlz ) PLEASE HELP ME DECIDE WHICH SUPER CUTE PICTURE I SHOULD CHOOSE! Please go check out her site, she is a SLP who currently works in an early intervention program, so she is RIGHT up our alley, folks!

BTW this is my birthday present from Honey....

HOW many days til Christmas?

This Christmas season, I have been quite slack. I did buy my two nephews their presents a couple of weeks ago but they were my firsts and as of today, I still only have 6 people's gifts done. I still lack at least 8 more some that require shipping! ARG! I know my problem is logistics, this year. It is so much work getting Faith in and out of the car... it's like a three ring circus! I can usually manage one or two stores but that's about it. I just feel like buying gift cards for everyone! LOL! We are entirely toooooo busy this week so I don't know when I am going to get all this done. We have at least 2 appointment every day this week except tomorrow. Friday, Faith gets her casts off for good! So excited! Our biggest present, this year, is a group present for Grandpa from all the kiddo's. A BIG picture of all the children, together, done in Tintii, so just certain colors will show up. Thing is, we missed to day to get together and do the pics, so we have to wrangle that THIS week. Did I mention, ARG! We decided to do a portable dvd player for Faith, this year. She doesn't watch tv, really. A couple of animal shows and "Signing Time" videos- that's about it. But with as much traveling as we do, we thought she could do some educational dvd's and it also plays picture cd's- which she loves to look at. So I snagged one at a great deal on good ole' Ebay! My other great find was also on Ebay, sterling silver charms with ASL letters signed out. So each of her therapists are getting one with their initial. And only $6 each! Not too shabby, if I do say so myself. SO, what's your best Christmas find?

Update to my previous post...Illegal parking

I got a response to my dirty email that I sent to the dealership whose cars were parked in the handicap spaces. The explanation I received was that the Explorer was his wife's and her mother has a weak heart and was visiting them but he had no explanation for the other vehicle from his dealership. He said he didn't know who drove it (the car with dealer tags and a whole host of advertisements for the dealership)! Now if there had been one dealer car parked there and I asked about it and he gave me the mother in law excuse I MAY have bought it. But TWO vehicles from the same dealership, parked across from each other, at the same time? UHHHHH......N-O! I didn't mention that the dealership is NEXT DOOR to the grocery store? Weird....HUH? I was crackin' up because he spelled handicap......handycap! This was the son of the owner of the dealership, too! "A PILLAR OF THE COMMUNITY"! LOL! In his defense, he promised to obtain a tag for his MIL and to "track" down who was driving the other car and be sure it didn't happen again! WELL, I SHOULD HOPE NOT!

Just wondering...Isn't this illegal?

Look closely at the ground and then at the windows and license plates...

I was at the local grocery store today and found not a single handicap parking space in the whole lot! I drove around for a few minutes and noticed these two dealer vehicles parked in two opposite handicap spaces. NO HANDICAP TAGS, NO HANDICAP PLATES!!!!
They were both from the same dealer (who shall remain anonymous). It got under my skin so bad I seriously considered waiting at their cars and confronting them! Instead I settled for photographing the vehicles and sending a rather cold email to the dealership with pictures attached! Don't you hate it when you see this? BTW~ I had to park way away from the store and lug that stupid wheelchair across the parking lot!

THANK YOU SHRINER'S

THANK YOU SHRINER'S HOSPITAL FOR CHILDREN...

I wanted to post a little about our experience while we were in the hospital. Faith was admitted the day before surgery and we were lucky to have a room all to ourselves. I was initially worried that we would have problems because I am not one to let go of Faith's home meds. We have spent a lot of time in hospitals and nurses/hospital staff don't like to give up control. So I was all prepared to have a battle royal to keep Faith's meds. With Faith's g tube and weird feeding schedule....I am NOT giving up control to ANYONE! So after some feather ruffling and policy quoting I finally was referred to the in house pharmacist who amazingly agreed to let me keep our meds as long as we informed nurses when we medicated her and kept her meds with us at all times. ( I wonder how we managed all these years on our own! LOL!) Anyway, after they realized we knew our stuff we were included in all the meeting and talks about Faith. After surgery we were sent to the EPACU- a critical care room with a nurse in the room all the time for fragile children (b/c of her seizures). A nurse was in room all night and they were quiet and helpful; watching closely for signs of pain or discomfort and keeping a close eye on our med regimen. The next day we were moved to another room, private and wonderful. During our entire stay we were respected and treated like a member of the team. The nurses were helpful and kind and they seemed to gravitate to us in droves when I would start medicating her or talking with a student nurse about our life with a special needs child. At one point there were at least 6 nurses sitting around listening to me talk about dealing with feeding tubes, seizures, meds, feeding schedules, hygiene etc. I think they were fascinated to hear real life experiences and successes and what worked. We were constantly questioned about our techniques and we even had a student nurse who spent several days following us around, learning about Faith and her life. We saw all Faith's doctors at least twice a day and they brought us copies of her x rays before and after. They have a wonderful child life program- arts, crafts, games, book readings and a STELLAR pet therapy program that Faith just adored! The cast team are wonderful, we just love them! The women are so diligent and caring- our dear Stephanie, cast tech, gave Faith candy cane legs for her parade. We love you, Stephanie! When our time came to go home we were helped out by two wonderful nurses who helped us devise a way for Faith to get in the car. I just wanted to give a snap shot of our experiences at Shriner's for other families out there who may be in need of their services, one day. THEY ARE WONDERFUL, TRUST ME! Last week I was approached by a Shriner asking us to let Faith be a representative child in the Shriner's Circus in the spring. We, of course, said yes! So Faith is going to be a star in the circus in March! Pictures to come!

Thank you, Shriner's!

Product Review.....

Today, Faith got her new Snug Seat Crocodile reverse walker! It was in a couple of weeks ago but a piece was missing so it finally got fixed and we got it. Faith's PT met us there and examined it for her satisfaction and ours! Thanks Ms. Erin! This product is the next step after the Gator gait trainer. It is a good bit larger than the gator but it much lighter weight. I can pick it up with one hand! It also folds up, which is wonderful when you are transporting huge wheelchairs and walkers and children all in the same SUV! LOL! The design is very pleasing to the eye... very modern and sleek with cool, curved front legs. We were lucky that Faith did not need all the extras that she needed in the past on her old gator...on this one we just needed the hip stabilizers and strap to keep her in. It is a very simple design but practical and sturdy. The hand bars can be rotated around and up or down to accommodate smaller/tighter children. Faith needs it to be close to her because she has trouble when she is walking and they go out too far. I also like the large tires in back with a brake to keep it from going backwards. On her Gator, it had these metal wheels that were supposed to do the same thing but they wore out like crazy. We had to keep replacing them, which was no easy feat! The Crocodile also has anti tip bars, in the back so she can't tip back. Faith was very excited about it, as she loved her Gator, and hasn't been able to use it for over 6 months. She wanted in so....despite NO NO's from the doctor...(cover you ears, any doctors or therapists out there!) we let her stand in it while we made the necessary adjustments. She did not appear to be in any pain and she was actually trying to take off in it, leg splints and all! LOL! I brought it in when we got home and she was signing "please" over and over to get in. I think when she gets these casts off, she is going to do some real walking! SO HAPPY! We also had eye doc appointments, yesterday, and they want to do surgery soon. I stalled for a while but she did say it needed to be done. Also Faith had another seizure, this morning, while Carl was feeding her. It was a short one, only about 30 seconds but it always puts me on edge. I have been paranoid all day. We go to the neuro, next week and I am going to sit down and have a pow wow with him. We have doubled her meds in the last 12 months but her seizures are still breaking through. Maybe it's time to try a different med...I don't know. We are using so much now...over 730 mls a month...two HUGE bottles. Please keep Faith in your prayers, we need all we can get. It seems like we get lulled into a false sense of security and then the bottom falls out, in some way. It also worries me b/c of the tumor. No one seems to want to repeat an MRI even though she has had about 5 breakthrough seizures since May. We might need to push for that too.

MARCHING...

GIRL SCOUTS MOUNTAINS TO MIDLANDS TROOP 2844

The girls get their picture made with our state senator, Thomas Alexander

This was Sunday at our town parade... Faith was escorted by two sweet girls in our troop who took the utmost care, pushing her over a mile! I must say how much I love these little girls! They have renewed my "faith" in humanity. They include Faith in everything and actually she is the center of attention most of the time. I never imagined that perfect strangers could be be so accepting and love her so much. They all took turns signing her casts and questioning me, in detail, about her surgery, recovery, pain and possibility of walking. They wanted dates when she would be able to walk! It was sooooo cute! I cannot even begin to express how much good it has done me and Faith to be involved with these little girls and their families. Special, Special, Special! We saw lots of people we knew and everyone was commenting on how cute she was. We decked out her chair in sparkly things, bells and YES even LIGHTS on her wheels! She was the coolest chair there!~

Post Surgery pictures....

Faith's feet before surgery..

Post surgery....

OK, so you can see that Faith surgery was successful! Pre surgery she was so tight that she could no longer put anything other than her toes down on her left foot. On her right foot she was so distorted that she rolled inward over where her arch should be. When we went to Shriner's on Thurs., I was prepared for the worst. Blood, carnage, sores etc. But it was nothing like I imagined! She had steri strips covering her wounds but when they came off the wounds were almost paper thin! SO relieved! The range of motion is amazing compared to pre surgery! These pics were taken right after they removed her casts and immediately you could see a drastic difference! No longer, is she pulling out on her right foot or in on her left foot. They just hang down like "regular" feet! I got more good pics to post later, but her foot was almost completely flat footed w/o any pressure applied to her! CRAZY! I just can't get over the difference! We are thrilled with the results...now we just have to see how she does once she comes out of the casts for good. She seems to be having some pain in the night, lots of moving around and restlessness, in her legs, but nothing serious. She comes out of these casts on Friday the 18th and straight into new AFO's. So just about 11 days left in casts. They kept the splints on so she is still very hard to move but we were able to remove them for a little while and she was so happy to bend her knee. I am going to post a lot more in the next few days about my crazy few days with my mother and Faith's debut in the town parade! AWESOME!

Amendment to previous post...

Let me just amend what I stated earlier in the Changes post. In SC, we have Baby Net, which is birth to three services. Then most kids age out and go into what is basically special needs preschool. Most kids. But you can try to qualify for continued services by applying and often having to do psyc. evals and such. Since we knew that we did not want Faith in preschool we opted out of that and applied for continued services. You don't get all the services like BabyNet but you do get EI services. So Faith did get those services extended but most kids don't continue that program, they go on to preschool. Anyway, I am going to post later about my last five days....CRAZY! Faith did good with her casts off but I will detail that later, today!

Ch....Ch....Ch...Changes...

Faith is closing in on her SIXTH birthday, in just a few weeks. I can't believe it! She was just a newborn baby, wasn't she? Six long years that, although they have gone by fast, many moments seem to be agonizingly slow! Surgeries, recoveries, development....etc, etc, etc. Today, Faith had a phsyc. eval for DDSN. In SC, when a child, like Faith, reaches age six, they have to leave the Early Intervention program and apply for entry into Service Coordination (lifetime eligibility). Changes are coming. No longer, will we have an E.I. come to our house to play with her, no more Christmas get togethers with other children in the EI program, no more close relationships with our service provider. When she gets accepted she will be assigned a service coordinator who will be in charge of her case but will only make contact once or twice a yr (or when we need something that they provide). Basically, we fall into the adult program. Even though she is only six! I think it's silly...they should provide services to these children for longer and/or a closer interaction with the service providers. I have seen, as she gets older, a falling through the cracks mentality with the system. At first, we were inundated with providers and therapies and the like but now at five, we never know what's going on in "the system", are almost totally isolated from other families like ours and we never hear about programs that we may qualify for unless it's by accident! But I digress....Faith is leaving the age of little children and babies and quickly becoming a school-age child (regardless that she isn't developmentally there, yet). Many changes, in the next year, are coming our way. I don't know if I am ready.....When did all this happen?

Faith and Gandalf, LAST Christmas....

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!

What a difference a year makes...

A year ago, Faith learned about Christmas trees for the first time...or at least she learned to identify one. A year ago, Faith new nothing of pumpkins or turkeys or holidays. For that matter, she wasn't trying to talk or playing with baby dolls appropriately. This year, she learned the sign for pumpkin, learned to say Turkey and tonight...hung her first ornaments on the Christmas tree....

MY BABY GIRL!

Sweeter sights have rarely been seen. She saw me hanging them on the tree and she wanted to do it. So I got out her little tree and we hung ornaments, together. Of course, most of the ornaments all ended up on the bottom branches and needed to be rehung but who's counting???? I got a few pics of her, starry eyed at the lights, as she got to participate in her first tree trimming! It reminds me to be so Thankful for my precious daughter. At the wonder of childhood and how she manages to prove everyone wrong! She was so happy and excited at this new experience!

This is ALL I need for Christmas, I am content and thrilled. If this is our life....That's OK! I am so lucky to be able to share these treasured moments with my daughter, things that were not always so easy to imagine in our future. I need nothing else in this life. Things that I wished and hoped for before she was born, they are not always realistic. But I have learned that many of those things don't matter so much, it's the little things that GOD shows me, everyday.

THAT LITTLE THING CALLED FAITH...

More pictures of our accessible house...

OK, if you are reading, you need to start at the previous post.....

The house just before it was finished....

Lever door handles...

Extra wide door ways and NO hallways...


Roll up sink instead of cabinets...

Our house....Courtesy of Regal Homes

So, Lovely Katy, over at Bird On The Street, asked me to post about our house and it's handicap access design.... We started the process 3 yrs ago. Our old house was Carl's childhood home with virtually no way to adapt it: doors were 28" in most of the rooms and all the rooms ran down a very long hallway, the bath was so small that two people could hardly fit in it and her playroom was down steps. We knew, as Faith got bigger, we were going to need a new house. We started scoping out different builders but quickly came up to REGAL HOMES. They build lots of houses in our area and quite a few subdivisions.

We decided to go with them if they could make some adaptations and accommodations for Faith. We looked at dozens of houses and plans, finally choosing the Ellington design. A four bedroom with open living room, kitchen and dining room. We knew we needed to get rid of the hall way to the extra bedrooms and one bedroom was going to be a playroom. So we sat down with Bob and he laid out a plan for a single level house with 3 bedrooms and a playroom with no hallways and all totally handicap accessible. I cannot say enough good things about Regal, as they made changes for us that they had never done all for no additional cost to us!!!!

They put ramps into every exterior door, push lever handles one every door, each door/way is at least 36", handicap accessible shower instead of a tub with raised toilet and roll up sink instead of cabinets. They also added four extra feet across in Faith's bedroom and a huge walk in closet with extra wide door, as well as a patio door with ramp out of her room. They were so kind to us, we are so thankful! It has made our lives so much easier especially as she has gotten bigger and more difficult to carry. She can get around the entire house, open any door (gotta be careful!) and hop around wherever she wants. After we signed the paperwork to start the house, it was finished in just 3 short months! I will say we spent A LOT of time deciding on features and layout of houses - months! And we had a very caring and understanding builder who did whatever he could to help make our house perfect for us. I also had to include a pic of my fav. piece of equipment... VIDEO MONITOR!!!!

BEYOND THANKFUL AND BLESSED...

As Thanksgiving nears, I am reminded of all the things I am so blessed to have been given.....

1. I am so incredibly Thankful for Faith- Faith, my daughter and Faith, the idea that God has given us...

2. I am so thankful for my husband-Father of the best girl in the world and my best friend.....

3.I am so thankful for strength- Never thought I had much of it, until I had to walk down this scary road....

4. I am so thankful for GOOD doctors- not all are, but the ones who are make up for it all. I am also thankful for the staff at Greenville, SC Shriner's hospital......

5. I am so thankful for the family and friends who have prayed for us, given us helping hands and loved us, despite the fact that we can not always do our parts during the holidays....

6. I am so thankful for simple childhood innocence...I live in this constant state and there is NOTHING better. Just sheer happiness over playing with pots and pans and being happy about it....

7. I am so thankful for all the wonderful families I have met, during our travel down this uncertain, bumpy road. I have been inspired, grateful, scared and sympathetic when I meet other families and it keeps me thankful for what we have to deal with.

8. I am so thankful for our home.... designed for Faith's future by Regal Homes, fully handicap accessible and those features all done for free! I only just recently became EXTREMELY thankful for these features- like ramps and wide doorways!!!

9. I am so thankful for the life lessons that I have been taught...I never thought I would say that...Thankfulness for pain...but it's true...

10. I am so thankful for the blessing of FAITH, she has been my biggest joy, lesson, pride, humility, fear, patience, peace........ I can honestly say, I have never been so blessed as the day she came into this world. Never knew how lonely I was without her, how fulfilled I was with her! I never knew there was a mom lurking down deep and she has taught me so much....

I AM SO THANKFUL AND SO BLESSED......

HAPPY THANKSGIVING TO YOU ALL!

Authentic Me...

Carla, over at So this is Holland, was so kind to list me as an Authentic Mom... So I am supposed to list five things that make me feel authentic! Here we go..

1. I KNOW that I put my daughter first. Unlike so many of our own parents and previous generations, I value my daughter and the honor I have to raise her. I know I can rest easy, when I lay down at night, doing my best for her.

2. Seeing that I inspire our friends and family and I hope help them to see the fragility of life and how we should not waste one minute we have with our children.

3. I feel this is MY calling in life... I used to think it was something fantastic and newsworthy...but now I am honored and satisfied with being the best mom to the best girl in my world.

4. I have walked down a path I never expected or wanted to but have SURVIVED! I can now say I know more about many medical issues than alot of medical professionals! I am an EXPERT on CP, seizures, communication problems and adapting (in life and equipment)!

5. I am truly happy to be home with my daughter.... THRILLED.... and I am so thankful that God has blessed me with compassion, love, committment, dilligence and patience with her. I see parents, every day, who can't stand to spend their days with their children.

Now I am supposed to pass this TAG along to five other authentic moms....
LOVE THESE WONDERFUL LADIES...THEY GIVE SUCH WONDERFUL SNAPSHOTS OF DIFFERENT EXPERIENCES IN THEIR LIVES...
1. Amy- Eli's mom

2.Jenn- Jude's mom

3.Amber- Jacob and Grace's mom

4.Beverly- Noah's mom

5.Karen-Faith's mom over at On Having Faith

My new favorite editing tool...

So my new favorite editing tool is Tintii. I have been seeing this color popping on some other blogs and websites but couldn't figure out how they did it. So I googled some things and found Tintii, a color popping program that has a free version that I downloaded. It was a bit confusing at first but I found someone had posted a blog entry about how to do the editing and once I read it and played with it, I figured it out. I LOVE this program! Black and White pics are my favorite but sometimes one just calls for something extra. I loaded some up and took them down to Walmart and printed them out to put up on my b and w wall in the hallway. FREAKING AWESOME! On the last picture, you can see just how much Faith favors Carl. I am totally addicted now! LOL~!