Wednesday, September 30, 2009

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.

Tuesday, September 29, 2009

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.

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....

Sunday, September 27, 2009

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.

Thursday, September 24, 2009

Lucky me.......

As most of us with special needs children have probably thought in the past..."Why is my child like this...Why me...Why do I have to be punished....Why does everyone else get normal kids...Why do we struggle so much?"

I must admit that I have had these feelings, I have been hurt, jealous, insecure.... but as time has gone on I have learned to appreciate the nuances of having a special little girl. I have grown to appreciate how innocent she is at 5, how happy go lucky she is, how sweet she is and how unaffected she is by the rest of society. I love how she isn't embarrassed, she smiles freely, how she doesn't know that she seems different than other kids, she likes everyone (I certainly DON"T!) and she will wear whatever I put on her w/o complaint!

I recently have had some experiences with caring for my sister's children for days at a time, while a family crisis is unfolding. Both boys and under the age of 3. Now w/o saying too much, their home is unstable for kids. These children have been spending alot of time w/ us and I have been amazed at how Lucky I am.

These kids are chaotic, unhappy, unkept and overly emotional. After just a week, I am physically drained and exausted. Constant crying, screaming, begging and general bad behavior. It has thrown our quiet home into a tailspin. Every night, I find myself wishing that it was just the three of us, again. I have been feeling like a black cloud is hanging over our house, while this drama plays out and we just can't shake it.

Normally, we have a quiet home, except for Football games and nights when we play silly games with Faith and she/WE screams and acts silly. We do the same things every night, on the same schedule, watch the same tv programs and are very fulfilled by having this kind of lifestyle. We both operate best with repetition. LOL! (Yes, folks, I am a type A personality) So, I have been thanking GOD for this and being so thankful that we are so fortunate in this area of our lives.

It has made me think about how we approach trials and tribulations and how even though we have been through the wringer w/ medical problems, we are so affected by changes in our home life and how we just think "I can't do this one more day..." LOL! Give me my special girl, my hubby, our dogs and cats and a QUIET HOME.

Which brings me back to my title, LUCKY ME... well, I guess I should have called it...


Tuesday, September 22, 2009


Once again, I am posting a blog in response to DR. Boucher's blog Therextras

( call for a fall blog carnival .

Check out her great blog for therapy talk and lots of great advice about equipment...

My story about HEALING is actually PRE-HEALING.....

... about how GOD gave us Faith's name and how HE prepared us to be healed by HIS name before anything was even wrong.

It was May 2003, my husband and I had attended a couples WEEKEND TO REMEMBER prgm a month before. A very good prgm for any couple who wants to get closer to each other and closer to GOD. A month later, Mother's Day, we were on our way to my grandmother's house and my hubby commented that I "looked" different. Well, later that day after 8, yes 8, pregnancy tests, I had the reason.

We were not planning for children, we had a nice life w/ two incomes, busy schedules and could do whatever we wanted. After the shock wore off, I knew I needed to be seen by a doctor b/c I am a type 1 juvenile diabetic. So we made our appt. w/ the local OB. My pregnancy was confirmed and we spread the news around our family. I was about 7 weeks at the time. Within a few weeks I had an appointment with my endocrinologist. For yrs, I had been trying to get approved for an insulin pump, but was denied each and every time for a variety of reasons. Well, when the insurance co. found out I was expecting, they had an insulin pump waiting at my doctor's office! I was so thrilled, words could not explain! On my way out I made a turn, going a different way home. I was passing down Faris Rd. in Greenville, SC and was thanking GOD for providing this precious piece of equipment for me and my baby. As I drove, I passed a church at an intersection that I had passed hundreds of times. FAITH WORSHIP CENTER.

Mind you I was less than 9 wks along, no where near being able to find out the sex of the baby.

I saw the church sign and I knew that GOD was telling me to name this child Faith. There was never a doubt in my mind, I knew that I was carrying a girl and that God was doing something very special. At the time, we took it as HiS way of telling us that our child was going to be healthy and that my health conditions would not hurt her.

My pregnancy went great, I was healthy, my blood sugars were great, I had dozens of ultrasounds, everything was perfect. My doctors decided that they wanted to induce me a day before my due date, because they were concerned about her getting too big. So I was induced on Jan. 6th, 2004. After over 24 hrs in labor, mecomium discovered and inconsistent contractions they decided on emergency c section.

Faith was born at 9:20 pm, they discovered that she was not positioned correctly and she had irregular breathing. She was whisked away with my hubby hot on their heals carrying a promise to me to not leave her sight. Our hospital did not have a NICU, it was a community hospital with very limited resources. When I finally got to see her, she was 3+ hrs old and they said that she had had some breathing difficulties causing her to turn blue, but they were not overly concerned. So I held my child and looked at her, knowing in my heart that this was what she would look like. Within the hr, she had stopped breathing twice and they took her away to be put under oxygen. We waited all night, trying to understand what was going on, with little word. By morning, it was clear that something was very wrong with our girl. A visiting family doctor on call, came by and recognized her episodes as some form of seizure. Within hrs, an emergency transport team had arrived to carry our new baby two hrs away while I was left behind still groggy from the Cesarean.

By the next day, I was walking on my own and desperate to get to my husband and daughter. When I finally arrived, they had discovered sagital sinus thrombosis (blood clot in the brain) that had deprived blood flow to Faith's brain and caused a stroke, damaging most areas of the brain, especially the white matter, sagital sinus' and ventricles. They had induced her into a coma to keep her seizures down and try to give her time to resolve the clot. She spent 7 days in a medically induced coma, 7 days that we slept on the floor of the NICU waiting room, except for 1 night. They performed EEG's, MRI's, CAT scans, spinal taps and other abbreviated tests on her. She looked like a pin cushion, covered in in wraps, band aids, iv lines and feeding tubes.

After her first 7 days, GOD resolved her blood clot, without medication. It just went away. The doctors said children can often resolve them on their own, but we knew it was a miracle.

She came home with us, monitors, meds, checklists, feeding schedules. Life carried on, we thought she was going to be your everyday average little girl. But at 5 months, she was dxed with cerebral palsy, a muscle coordination disorder associated with brain injuries like hers. Then more dx's followed, surgeries, feeding tubes, more doctors.

Time has passed and they say that "Time heals wounds..." but we know different. GOD healed us through giving us FAITH. He gave me her name to strengthen us, resolve us, reassure us and encourage us. There have been so many times when her name has appeared on street signs, church billboards, picture frames, thrift store signs and songs. Each time I see it, I know that GOD is reminding me to be strong and put my FAITH in HIM. Our home is filled with signs, quotes and knick knacks that others have found and found meaning in, for us. I know that if we had just chosen a name out of a baby book, things would have been different. We would not be where we are, she would not be where she is, other people who have met her would not be where they are and HE might not be glorified. Of this I am sure, GOD was preparing us for what we would see and experience and HE was also PRE-HEALING us by giving us focus in our lives to make it through. When I see her name or speak it, I am filled with HAPPINESS, GRACE, PEACE AND ASSURANCE that HE has something special for her and for us. I am BLESSED TO BE THE MOTHER OF THIS CHILD. I have never been more sure of something in my life. We still bear great scars and are guaranteed more wounds BUT we were healed by HIM and we have FAITH.

Saturday, September 19, 2009

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


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 ( . 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!


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?????????



Monday, September 14, 2009

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!

Friday, September 11, 2009

Grandmommas, Cars and Llamas

A blind gentleman and a lady with unidentified special needs

What is that?

Mom, can I keep it?

Look at those eyes "BEE"

Oh, I love your hair!

Diving dogs!

I'm outta here!

So this week has been a fun filled week, we took off from all our therapies and Grandmamma came to visit! My mother is Faith's only grandmother, since Carl's mom passed when he was 15. She lives in NC, so we really only see her once or twice a yr. She had fun visiting the beautiful Blue Rdg Mountains that we call home ( there's nothin' like 'em! LOL), shopping at thrift stores and all of my cheap grocery hang outs!
We made a trip to Brevard, NC and Faith got to ride her first car ride(outside a grocery store)! FUN with a capital F! We also visited the NC Mountain State Fair on Fri., Carl took the day off and we boogied up to Fletcher, NC for the day. It's a very agricultural based fair with lots of animals, crafts, produce and of course rides and ridiculously priced food! It's is one of our fav. fairs! Faith loved seeing all the animals BUT from afar, NOT up close! There was a particular camel that was infatuated with her and her new wheelchair, but she DID NOT share the same affections for it! LOL!~ She got to ride a little fiberglass horse (you know, the kind that used to be outside the grocery store) and she LOVED it! I thought we were going to have to pack that thing up and take it home! She particularly enjoyed the craft building that had rows of amateur photography submissions, she rolled down each aisle and pointed at every single animal picture! SOOOO CUTE! I really liked the petting zoo, they gave us a bag of carrots for Faith to feed the animals but she was having nothing of that. So I partook! I got some great shots of some really cute Llamas, camels, goats, funky cows(bulls) and a few bovines that I couldn't identify

The other cool thing was that there were TONS of people with special needs there the same day, the first day of the fair. We saw a group from a group home about 20 or so w/ all sorts of people. Then I saw a whole bunch of elderly folks w/ walkers, wheelchairs and canes. I saw blind people and people with service dogs. It was sooooooo cool to not be alone out there and to see so many folks out enjoying the fair! I took a bunch of shots of folks I saw as I ventured around the fair. They all looked like they were having fun! Also we got special front row seats to the Frisbee dog and dock diving dog program! We were trying to find a place that Faith could see the dogs but no one would move over, so the MC of the program lifted the gate and gave us backstage access right up next to the dock, so Faith got to see the dogs jump right in the water! FUN! We also snuck in a couple of adults with CP with us and they had a blast, hooting and hollering and clapping! I will be posting some great pics of our adventures so enjoy!

Thursday, September 10, 2009

What I have seen, confessions of a mother........

It seems like there is a pattern of posts, lately, about special needs children and their capabilities and potential. So I thought I would toss my hat in the ring and talk about some of the things that I have witnessed as a mother of a child with cerebral palsy.
I remember when Faith was born and all the terrible things that happened. It didn't seem real, but we got all sorts of "bad news" predictions about how she would be. Some were true, some were not and some were close. But I have learned over the last 5 1/2 yrs that potential is what you make it. When she was little, I would watch her and talk to her and wonder "Does she know who I am? Does she understand me? Will she ever be able to talk? Will she ever call me momma?" I used to agonize over things like that. So to answer those questions.... Yes, she knows me! Of course! I am her mom! Yes, she understands me, maybe not every word but if I ask her where is a dog she can point out our dog! Talking? Well, that is still a work in progress, she is making more sounds and some sound like words. But she does have her own collection of languages, both real (ASL) and made up that we can understand. And best of all, this spring, we finally got something that she calls me for mom..... "Ahhhna" Which sounds alot like Mama and will be accepted with pride!
I think that the worst thing for all parents is the uncertainty of what our children will be is magnified ten fold for special needs parents. And the delays in development make things seem even worse, it's like watching paint dry! Every one else's kids are cruising right along past our children, doing new things, going to school, learning to ride bikes and play dress up. While our children are still mastering how to sit up. It is definitely one of the worst things about being a parent like us.
But, everything has a season and all children can progress. Maybe not like others, but in their own time at their own pace. It can be hard for us to see, especially when our special children are very young. For the longest time, over 4 yrs, Faith had NO form of communication. She would watch us talk to her, but never respond other than a smile. Then last year in July, we were waiting outside of her therapist's office for our turn and a little baby girl came out with her mother. Faith reached out and make a gesture towards the baby, so I said BABY and signed the word. All of a sudden, she copied me! She actually did a sign, and did it correctly! I was FLOORED! Called every one I knew to brag on my girl! After that it was like a light bulb was turned on! She wanted me to show her everything! Right now, 14 months after beginning, she has about 40 signs that she can do w/o much prompting. And she is always asking me (with her own made up sign for Help) to show her more, when she sees something new! It is truly a miracle! After 4 1/2 yrs!
I think that sometimes God has to teach us patience so that we can truly appreciate the miracles that go on around us. I used to think I had never seen a miracle, but after Faith was born I witnessed many miracles! I am a miracle veteran, now! And He has taught me patience! I treasure every small thing that she learns or masters, even if it isn't quite how other kids do it! And as Katy from Bird On The Street said, disabilities are part of the human condition. We all have our own things to master and challenges to overcome. Some are just more obvious than others. I have learned about patience, persistence, resolve, determination, strength and most importantly FAITH AND UNCONDITIONAL LOVE! And those are things that not everyone is blessed enough to experience in their lives, truly!
I KNOW beyond a shadow of a doubt that I was born to be the mother of this child, just as she is, just like God made her. And for me that is a big source of pride.

Friday, September 4, 2009

Your biggest pride?

Ok everyone, I was thinking about somethings that several moms out there have made post about recently. About seeing the small, "Giant" steps that our children take everyday in life that many thought they could never do. This got me to thinking about all of the things that Faith has mastered and overcome in the last 5 1/2 yrs. There was holding her head up and then there was sitting up, at almost 2! BIG, I tell you! Holding things in both hands, learning her own version of a commando crawl, then hopping and now walking on her knees! SO many of these things seemed like unrealistic expectations for sooooo long. I used to think (sometimes, still do!) how is she going to get all these vital things? How are we going to teach her? What will happen if she doesn't do certain things. But then I see her learn something ALL BY HERSELF! Like how to open the top on a PEZ dispenser, (TODAY!)! She thought it was the funniest thing ever! And so did I! So I wonder about how all of you look at these things? What are some things that your babies have learned to do, that maybe you didn't think they would do or surprised you with a new skill, out of the blue? It brings me back to thinking about what Katy wrote in her list a few days ago about assuming the best, instead of the worst! Because MY daughter CAN cover her eyes and play peek a boo in her own way! SO FREAKING CUTE! And she gets things, things that I didn't think she got! What are some of the small things that you are really hoping for?

Wednesday, September 2, 2009


I am posting a link to Katy from Bird On The Street's blog, she compiled this great list for being a parent of a special needs child and it is SOOOOOOO GOOD! Go check it out, if you haven't already!

Faith had an eye doctor appointment, today. It was her first with this new doctor from Emory. A woman, but as with most eye doctors, kind of weird, don't talk much and bad bedside manner. Anyway, Faith was put in glasses when she was 9 months old, they said she had farsightedness, strabismus and ambliopia. But she never tolerated the glasses. She lost almost every pair she ever got! Everytime we would go they would say her prescription was off. I don't know how they can tell specifically with small babies but it was never right! So for a while we just stopped going b/c we were frustrated and couldn't get anywhere. So we met this new dr, today, and she said that Faith didn't need glasses. She still has the strabismus and ambliopia but her vision, itself, was w/i normal limits. So she said that she wanted to review all her major med. records primarly dealing with her brain tumor (on the optic pathway) and her neuro. status before she made an official finding. But she thought that Faith would benefit from surgery to correct those two problems. So we go back in 3 wks to see what she thinks. But I find it very interesting that she didn't think that glasses were nessessary. I asked her if her vision could have improved but she said that alot of kids are farsighted when babies but it goes away, and maybe it just took hers longer b/c of the neuro complications. Who knows? Anyone out there an opthamologist? Then dialated her eyes and so for the whole afternoon she was squinting at everything! Poor baby! I left the house this morning at 7:15 and didn't get home til 4pm! It was a long day w/ the doctor and therapies in two different cities an hr apart! So I dropped about 160 miles today maybe more. BLAH!!!! If anyone out there has a child who has had eye surgery can you please contact me, I would like to ask some questions. Thanks!