Rolling Progress.....

OK, here is my new favorite video of Faith. This was taken last week, at her pediatrician's office. She has had her wheelchair since October, but she has only figured out how to push it backwards. She goes in circles everywhere......Finally on that day, she REALLY wanted to get to that stool, so bad! So she figured it out! All by herself and I was lucky enough to get it on video! She is still working it out but if I tell her to push it the other way, when she is pushing backwards, she can do it for short distances! I am so proud! She rolled herself right under a garment rack, at the Goodwill, today! I was laughing so hard and so was she! My BIGGIE girl!

HAPPY SIXTH BIRTHDAY, LITTLE ANGEL...

HAPPY BIRTHDAY...MY ROCKIN', AWESOME GIFT FROM GOD!

Six years ago, I was preparing for an induction....

Six years ago, I was ready to meet my new daughter...

Six years ago, I was putting together a crib, by myself, the night before going in to the hospital...

Six years ago, I was excited, nervous, scared, joyous...

Six years ago, I was ignorant...

Six years ago, I was packing my bag, getting ready to head to the hospital the next morning. I didn't know what to expect but I was ready to get things over with and meet HER. This little ball that had been my constant companion for 9 months. I KNEW her, already in my heart. I felt her move, kick and knew which side she liked me to sleep on. I KNEW what she would look like. Months before, I had found a Pampers ad in a baby magazine with a picture of a toddler, who I was sure looked just like what Faith would look like!(I still have this picture and she does favor that little girl, a lot!) After all the uncertainty, I was convinced that she was going to be fine and we would be bringing a baby home in just days. I was also NOT having a C-section!

Then labor happened and she was turned wrong and I DID have a C-section. Something went wrong and she got a blood clot and had a stroke before anyone knew what was happening. Then she was moved 2 hours away and I was left behind to recover, by myself.

Nothing I imagined happened...I missed all the bonding, first bath, diapering and all the big firsts...intubation's, iv's, MRI's, EEG's, CT scans, spinal taps. Regardless of the circumstances surrounding her birth...she made it here, although not in the ways I imagined.

After all the things that have happened in her six years I have this wonderful little girl who inspires me every day. I am thankful for all the lessons I have learned and for her very life. I used to ask "why her, why us?" but I don't anymore. I say "We were given a miraculous, once in a lifetime gift." I never thought I could come to this point, after all it has been six years! But guilt, frustration, anger and furry have given way to acceptance and great pride.

She has overcome so many awful obstacles...WE have overcome so many, ourselves. She CAN communicate...she CAN move...she CAN make you laugh like crazy...she CAN understand most of what you say...she CAN weasel her way into any one's heart in just minutes!

I am so blessed to be her mother! I am lucky to have witnessed a great miracle. I am grateful for every moment she is on this earth and I pray that she continues to be for many, many years. I love this child more than anything I could ever imagine. When people look at us, as I push her wheelchair or carry her to her car seat, in pity... I just smirk..they don't know anything! They probably haven't ever even seen a miracle before!

I can't believe it's been six years! There were days... still are... when I wasn't sure she would make it to five and now here we stand...old enough to begin school in the fall.

Faith, you are a funky, special, one of a kind little girl who has changes so many people's lives. I love you so much, and I wouldn't change you for anything! You are the light in our lives and my reason for living! I am incredibly thrilled with every wonderful thing you have accomplished.

BTW, this is a small celebration for me...it's my 100th post. Thanks to all my friends who continue to read as I pour out a little of our lives onto the world.

Gastrocs Release....

So we are finally home and trying to find a new routine with life in double casts and knee immobilizers up to "our" armpits! Faith has done really well since her surgery. We had a FANTASTIC anesthesiologist, who worked really hard to find a concoction that would keep her from her prolific vomiting, after surgery. It was an astounding success! Her surgery, itself, went great. They were able to lengthen all the muscles that they had planned except for one on her right leg. But it was cool b/c they cut this muscle and actually attached it to another one, close by. It wasn't something we had discussed beforehand, I didn't even know they could do that! Forgive my stupidity, I just never even considered that. How you can take one muscle that is extraordinarily tight and cut it, then stick it to another muscle that does something completely different and then they both work!!!????!!!>>> CRAZY.......

We got to see copies of her xrays of both feet before and after surgery. It was AMAZING! The before shots showed TONS of misaligned bones in her foot and ankle areas. Some were going in completely different directions, some were smashed together, some were almost upside down. The after surgery xrays were astounding! They weren't perfect BUT they were about 85% better! Most of the bones were much closer to the right positions and all were better aligned! I don't know tons about the bones in the foot but even I could clearly see a dramatic difference! It is so exciting and I am so hopeful that this will help her walk~!

So she got out earlier than expected and I will have to post more about our experience while at the hospital. (Don't worry, it was remarkably great!~) Now we just have to learn how to carry this kid (she's basically like a long, flat piece of wood that is too long to fit through a doorway! LOL!) We did get our hands on a reclining wheelchair with elevating leg rests after MUCH work and DAYS of tracking! It's way too big but we made it work. So now I REALLY NEED A MINIVAN or wait..... a 15 passenger van. ARRRRGGGGGG.... I am soooooo embarrassed that I am admitting that!!!! LOL~!

Seizures and wheelchairs

This morning Faith had a really bad seizure, about 5 minutes long. This is her first partial complex since Feb 17th. She had wakened up about 5:30 am and Carl had put her in bed with us. Then at a few minutes after 6 am, he woke me up saying that she was seizing. We started timing it and it lasted almost 6 minutes. I was so scared! We keep Valium in the house, to use if her seizures last more than 3 minutes, but after 3 minutes I could tell that it was starting to get better. This was her typical kind, affecting her left side, her leg, arm, eyes and mouth all twitching rapidly. Slowly her leg stopped, then her arm then her eyes and I knew it was going away. So we didn't dose her with the Valium b/c it will cause her to sleep for like a day, no joke! Her last dose of it, she slept for 28 hrs! Scared us to death!

I am sure that any of you whose children suffer with epilepsy, know what I am talking about when I say it is the most out of control I ever feel! Anyway, after 5 or so minutes, all of a sudden she sneezed and just sat up, looking around! It was so weird! She didn't appear to know anything had happened and seemed fine. We "tested" her on a range of subject like pointing to us, the cat, dog, giving hugs etc and she passed everything. She is not like most people with epilepsy, she never sleeps after a seizure (except with Valium). She went all day like normal, a bit grouchy but normal for the most part. I watched her like a hawk, though! We called the neuro and they reported that her Tegretol levels that were checked last wk were w/i normal range but on the low side of normal, 6.8. They said it was better than usual for her but we should go up, to hopefully ward any more off. So up we go! Right now, we get a huge monthly dose of Tegretol, so now we are going to be the largest official Tegretol clearing house in the eastern United States! LOL!!

Anyway, Faith got signed up for Girl Scouts, today. She is going to be a daisy! I am hoping to get her exposed to other little girls her age who are typically developing. Their first meeting is next Thursday.

BTW: Thanks to Ellen over at TO THE MAX for the Lemonade Blog Award! I will try to figure out how to link it up in the next day or so!

I am posting a picture of Faith in her super cool new wheelchair. And check out the bottom of my blog page for a short video of her and her cousin, playing.

WooooHoooooo! NEW CHAIR.....

Faith finally got her correct chair, today! We are so relieved and happy! It was much more appropriate in size for her as well as several features that we had asked for and not gotten in the smaller chair. She hates shoulder straps and on this new one we can take them off completely. It also has an adjustable crotch strap. In the smaller one, it was fixed in one place. Faith was so excited to have wheels again, she was pushing it all over Shriner's today. Back and forth, back and forth.
Her appointment went OK at Shriner's. We waited FOREVER to see our surgeon. When he finally came in, he examined her legs and feet and told me that he wants to do some additional muscle lengthening when he does her Gastrocs release surgery. Three muscles on her right foot across the top and one on the inside of her left foot. He said that it should help give her more flexibility in her feet. Right now, her right foot turns out in a weird way at the ankle and her left foot turns in, in the opposite way. I am actually happy about this prospect b/c if she gets more range in her legs and her feet hopefully she can begin walking and have a more natural gait.
The surgeon told us the whole surgery should take less than 2 hrs. and she will have about 4 small incisions on her right leg and two in her left leg. Very small, he said. He also said that she may be able to walk in her casts once she is cleared from surgery. I am skeptical about this but her PT said she has seen kids walking just a few days after surgery!
Well, the countdown begins... 40 days and counting. Please pray for her and for me to be strong during this time.

I'm so excited...

Well after what seems like an eternity fighting the "system", we finally got the call that Faith's correct chair is in! I can't believe it! When they said that they had to order a replacement, I was preparing for the worst. Maybe months of waiting, but for once it wasn't even two weeks!!!! I'm so excited! We are going to Shriner's tomorrow, for Faith's pre op appointment. I am really praying that they don't pop any suprises on us. There has been talk of reconstructive foot surgery in the future, and I am praying that Dr. doesn't say that he wants to do it now. Anyway, then we get to go pick up the new chair. I really hope that everything is right on it, this time.

ADDED NOTE:
We just got a call from Faith's PT (see previous post) and she was able to work out a deal with our therapy center, so that she can continue to treat Faith, even though she is leaving. We will be her only pediatric patients, now. I am so moved by this gesture. How touching....

D.M.E.......or "Durable" medical equipment....

CONVAID CONVERTIBLE

Faith and her baby cousin, Aiden, in her new "temp" chair.

I am posting a blog here in response to a blog over at Dr. Boucher's blog TherExtras (http://www.therextras.com/) . Dr. Boucher had been discussing selection of wheelchairs/standers and the like . So I decide to put my two cents in and discuss our experience with the dreaded DME. (Go visit her great blog!)

I apologize in advance, for the long post.....

First off.... Faith has had about 3 things in this category ordered for her since birth. All in the first yr and a half of life. All from different providers, All with problems. A stander (way too big, she was 16lb when it was ordered and when it arrived it would fit a child over 100lbs!!!) A Britax Traveller...(also too big for a one yr old, really w/ our experience, although great for her now, four+yrs later) and last but not least a small bath chair for her before she could sit up (NO complaints about this piece! LOL!)

Now, on to our wheelchair experience... the heart of this blog.

We were approached by our original PT about 2 yrs ago about getting a stroller system for her b/c she was getting too big for an umbrella stroller. We were still in the "issues" faze and were resistant to getting a wheelchair or anything like one. So we procrastinated, lost our PT, got a new PT, Faith got bigger (bigger Too quickly) and before we knew it last year in NOVEMBER we were in a bad way for something to move her around in.

So we approached our PT, who was not really informed about all the potential options/styles/vendors/choices. After 2 months of begging we finally got her to bring in the DME comp. that our therapy place works with. A few more months passed, another meeting, and a lot of discussion about wheelchair vs stroller style.

We did A L O T of research on our own b/c we were not provide it through ANYONE else. Trouble was in our small part of the world there are no Vendor showrooms, hospital chair clinics or even any demos to try out. More time passed, we had chosen one that we liked and thought would be a good option for Faith. We chose the Convaid Convertible chair, a stroller type wheelchair that folds up like an umbrella stroller and also has removable wheelchair wheels. Our thinking was that we could fold it up (very important) but she could still have the potential to learn to use it like a wheelchair. We DID A LOT of research, did I mention?
Now, I will say that our mobility co. did expose us to a Quickie brand wheelchair that they were delivering for another client, but nothing else until we became insistent to try something out.

The problem lay in that our mobility co. wanted her to get a regular standard ole' wheelchair and we wanted the Convaid. Our therapist, at the time, was no help, throwing her money wrench into the mix with the suggestion for a power chair! (NOT appropriate for Faith, who has poor fine motor skills)

Well, miracle of miracles, they finally got their hands on a demo of the Convaid and let us BORROW it for a few weeks. We loved it and were sure that it was what we wanted. So we laid down the line and insisted on this chair. We asked for a purple Convaid Convertible with the double flap trunk support strap and the clear tray so that she could use it during speech therapy. Basically, that was it. Oh yeah, and the issue about size! After using the stroller (12 in model, smallest they make) we were concerned that she might not make it 5 yrs in that size (required amount of time that TEFRA says we have to keep the chair). The equipment guy assured us that she would not outgrow it commenting that he didn't for see her growing that much in 5 yrs!!!! Mind you Faith is perfectly average in every way regarding size EXCEPT her head! LOL! So the chair was agreed upon and the requests began.

Doctor prescrip required stating the ridiculously specific info about the chair and why we needed each piece. Medicaid/TEFRA approval required for the ridiculously specific info for each and every piece on the chair. Ordering for the ridiculously specific chair, which was supposed to take no more than 2 weeks!

THAT WAS IN APRIL, FOLKS!

After a ridiculously long post, we finally got the chair last Friday! After our request to TEFRA were denied based on their insistence that they already bought us one (they did NOT, although they did rent us a special wheel chair when Faith was in double leg casts in Feb. for 30 days, at a total cost of $155) Anyone out there know where you can buy a ped. wheelchair for $155???? Give me a call, PLEASE! After "they" (unknown organization/gov. agency/Convaid) lost our order 3 different times.......... we did get the chair!!!!

Trouble is..... the FREAKING chair IS TOO SMALL!!! Faith's hips came to the absolute edge of the chair, her feet went to the next to the last notch in the foot plates and her shoulders went to the last notch for the shoulder straps in the fancy multi positional padded three point harness system (that we DID NOT ORDER). Now Convaid does say that it will hold a child up to 66 lbs in this transport model. Faith is 42lbs, 42in tall! Oh did I mention that the tray was no where to be seen, the arm rests were also missing?
Explanation....... well, we only have a few.... the armrest story was that when it was initially ordered they were standard but by the time we were lost 3 times they were no longer standard! Now who has ever heard of a wheel chair without armrest. That's like a wheelchair w/o wheels!

So after a ridiculously long post..... we are here.... they agreed to take the chair back...(Praise GOD) and graciously agreed to include armrests at no additional cost! ( Thank you, oh glorious Convaid, I will be remembering you in my will!).
And they say.....all of this should take less than a month! We will see.

I will say the chair is exactly what we wanted, barring the errors. And if you check my last post, within two times of Faith being put in the chair, she has learned to use the wheels! We are excited to get the right one, sometime in the next 100 yrs.....wait should we have gone 2 sizes up?????????

SO WARNING TO ALL YOU PARENTS, THERAPISTS, CARETAKERS OUT THERE.... BEWARE.... even if you think you have done enough, DO MORE!

RESEARCH, RESEARCH, RESEARCH..... DID I MENTION HCRAESER (research) ?????
RECALL, DEMO, DON'T BE DISMISSED AND MOST OF ALL FOLLOW UP WITH EVERYONE!

More thoughts on progress.....from a miracle veteran!

So, I have some more thoughts and remarks and reports on progress about the potential in our children. I had blogged about some of the miracles I have witnessed since Faith's birth. She continues to amaze me and catch me off guard, even me as her "Head Cheerleader" and of course, mother. We finally got her new wheelchair on Fri. morning, we were very excited and full of anticipation the night before. Unfortunately, the chair isn't right, she is already filling up the seat and almost at the max. possible adjustments on the chair. A fact, I pointed out to the equipment guy over 6 mo. ago when we were ordering it, asking if we should not get the next size up since she has to keep it for 5 yrs! Anyway, I digress, this chair was a big point of contention with the equipment guy, our therapist and us. We wanted a stroller type chair that did not look so much like a wheel chair that could fold up compactly but allow her the potential to learn to push it herself. We chose the Convaid Convertible Cruiser, with a stroller style and removable wheelchair wheels. A very nice chair that we really wanted. After much debate and MONTHS of arguments back and forth, we got everyone on board. The equipment guy and her therapist at the time did not think that Faith could learn to push a chair like that or maybe that she would not be able to manage it w/ her tone. HAHAHAHAHAHAHAHA! Of course, my miracle child proved everyone wrong! Today, her second time in this chair, while waiting for OT in the hallway....(one of her favorite places for miracles, you know, when she used her first sign) she put her little hands on the wheels and pushed that chair forward! Then backwards, then forwards again!!!! By afternoon, she was really getting the hang of things! She was sooo proud of herself! And of course, God showed me again to NEVER assume anything! We have not worked with her yet in this chair, mind you! She figured it out all on her own, that little rascal! She wanted to push it everywhere we went, even though she hasn't figured out the whole concept of holding on the outside part of the wheel. So when she pushes it she gets really dirty hands and she hasn't quite figured out to keep moving her hand back to keep going straight ahead. But I KNOW she will. We as parents of special children suffer with all kinds of uncertainty, it's a bad side effect of the job. But we MUST learn not to doubt or assume about our children. We all suffer from this at different stages. I know parents with adult special needs children, babies, and teenagers. The worst is for parents of young children, when you are just starting out on this rugged terrain and are so uncertain of our children's future potential. I KNOW I have been there! But they will find their own way to surprise us. They will, I promise! It may not be the things we had in mind or the way we had in mind or what we thought we wanted. But they do! I tell you the truth. My little girl is a rolling, giggling, happy, loving, carefree bundle of miracles! Just think about all of the small things that your child has overcome, just living is a miracle in itself. Especially if they had a traumatic birth or health problems that complicated their lives. But we must look at these children as miraculous gifts given to those who GOD has chosen for various reasons. I believe, in my heart of hearts that I was born to be the mother of this special girl. I know I say this alot but it is so deep in my heart there is no doubt! And I am proud to be that! I feel like I am blessed in ways that most people do not get the chance to be. I don't know why, I don't think I am special or anything crazy like that, but I do believe that I am BLESSED and so is my daughter. I hope that this inspires other parents like me out there, to look at the smallest things in a different light. GOD is performing miracles, every day, right in front of our eyes!