Oliana's latest diagnosis

I know it's been a long time since I've written.  A lot has changed since then.  I've had my hands full with 3 little kids.  Especially with Ginger who cried all the time for the first 5 months of her life and Oli had some adjustment issues dealing with a fussy baby.

Oli has made some amazing  physical progress recently.  She can now take steps on her own.  We still have to be in front of her to get her to do it since she doesn't have an adapted mobility device yet.  When she's more stable and her balance improves we will get one for her.  She can also stand on her own now and does some modified crawling, with her hands in front of her and her head on the floor.  She really is into exploring now.

We recently took her to Philadelphia, PA to try and figure out if she was autistic or not.  With blind children it's very hard to get an accurate diagnosis since many of their behaviors mimic what autistic kids do.  These doctors are specialists that deal with determining whether a blind child is truly autistic.  Unfortunately, she was diagnosed as having autism.  One more hurdle for her.  Right now I feel that the autism it what's holding her back and not so much the blindness.  She still isn't talking at all and she went for a period of about 4 months where she didn't say anything at all.  It was heartbreaking. A lot of times it seems like she's in her own little world self stimulating and it's very hard to reach her.  Now she is starting to mimic a few words and babble again.  She isn't making great progress in school either.  She hasn't met any of her IEP goals yet.  I have a meeting with the school on the 18th to adjust the goals to more appropriate things that she needs to do first before we can move onto bigger things.  I'm hoping I can have enough of an argument that they will allow her to attend the school for the blind when she goes to kindergarten.  Her Philadelphia doctors said that they would help us fight for it.  They really believe that she needs to be in that school.

I did find an autistic school for her.  We go for her tour and consultation on the 13th and then they will schedule an assessment to determine how many hours she needs.  Typically during the school year she would go to her PPCD program in the morning from 9:45-1:45 and then she would go from there to the autistic school.  The type of therapy she needs for  autism is called Applied Behavioral Analysis.  I don't know a whole lot about autism yet but have joined a few autistic support groups that are here in Austin and actually met one mom online that is the parent of one of the boys in Oli's class.  We're going to have a play date next week.  I'm so excited!

 So... not such good news lately.  She just has a lot going on.  Blindness, autism, and some mental retardation.  It just breaks my heart and sometimes I have such a hard time dealing with it.  It's my baby and I hate to see that life is so hard for her. Especially when people make stupid comments like why doesn't she talk, why does she shake her head and flap her hands.  On top of that, part of her deletion has caused her hair to grow extremely slow so everyone thinks she's a boy.  Even when she wears pink!!  Dumb people!!  Her hair is growing it's just so slow.

 She has to stay in the hospital for 2 days next week so they can do a 48 hour EEG to make sure that she's not having any seizures that we're not seeing.  Hopefully she won't.  Then she needs to have another hearing screen to make sure her hearing is okay.  She's at high risk of having hearing loss.  They have to put her to sleep for this procedure because it's a high tech test that measures her brain waves against sound. 

We just need a lot of prayers for her.  Prayers that she is not having seizures, prayers that he hearing is normal and that this ABA therapy will unlock the door that will lead to communication for her.  Prayers also for her family that our struggles are not to great and we continue to focus on what really matters.  Loving and fighting for our incredible daughter.

Baby Ginger's Arrival

Baby Ginger has finally arrived!!!  Ginger Malia Pomokai'i Gardner was born on March 9, 2010 at 2:58 a.m.  She was named after her auntie Ginger and auntie Julie (Seth's sisters) , whose middle name is Malia.  Pomokai'i means "good luck" in hawaiian.  She was 7lbs 7oz and 20.5" long. All parts are accounted for and she actually has some hair!!

 The day before she was born was a very busy and eventful day.  We woke up March 8th at 4:00 a.m to get ready to go to Dallas.  Oliana had an appointment at 9:00 a.m with her ocularist to get fitted for her new prosthetic eyes.  We ended up spending 8 hours at the appointment.  Mr. Trawnik had made her new green eyes!! We were very surprised. We thought he was just going to increase the size a little bit and fit her with clear conformers.  He put the right one in, then we had to leave and come back a little later to see if it bothered her at all.  Then he put the left one in, it was the same deal.  He ended making them both way too big and they were very painful so he had to take them in and out a bunch of times.  It was awful for her.  She was screaming in pain and it was our worst ocularist visit ever!!  Unfortunately its just a trial and error process.  He thought that her sockets would have expanded more than what they did.  I felt like a terrible mother for putting her through this and was seriously questioning why we do this at all.  I know later it will be worth it, I hope.  I just wish for the millionth time that it this had happened to me and not her.

So we finally were done with the ocularist at 5:00 p.m.  Mr. Trawnik finally made both of them smaller and was only able to increase the size  from the clears a tiny bit on both sides.  I'm really not that surprised they didn't grow more because she hadn't had new conformers in 7 months on the right and almost a year on the left.  The left side looks amazing.  It's huge compared to what it was and has a completely natural shape to it.  Of course now that the left is so big the right eye looks really small.  The right eye looks amazing too though.  The shape of her eye is now normal and not so round.  Her eyelashes actually flip out now instead of rolling in and sticking to the conformer.  All of these changes have occured because he made them custom fit.

So we got home at 8:30 that night.  I was so uncomfortable by that time because we had spent all day in and out of the car and walking around.  I jokingly told Seth to get the bags packed because I was going to have the baby that night.  At 9:30 Seth told me he was going to take a shower.  Oli was still awake so I put her in her spinner and layed down on the couch.  5 minutes later and a big kick from baby Giner, surprise, my water broke!!  I went and told Seth, who frantically started running around the house trying to get things together.  I, of course, was maybe a little too relaxed and took my time taking a shower and packing my clothes.  I was trying to dry my hair and realized that my contractions were pretty close together.  They still didn't hurt though and I had been having them for 4 weeks now so I thought we probably had at least 12 hours.  Seth ended up talking me into not drying my hair and leaving for the hospital.  Good thing!! We got there, got registered, and the nurse finally checked me at around 11:00 p.m.  She asked me if my contractions hurt.  I said no, not really.  They felt like they have for the last month but maybe a little stronger.  She said "You're not going to believe this."  I said "I know.  I'm dialated to 3cm and 50% effaced"  She said "No. You're dialated to 7cm and 90% effaced!!"  She couldn't believe I wasn't in pain.  I quickly got an epidural because I knew it was going to hurt.  It was only a short while after I got my epidural and she was ready to be born!!  Unfortunately the doctor was not ready.  She was next door delivering another baby!!  I had to breath through 20 minutes of contractions.  That was not so much fun.  The epidural was not 100% effective.  Finally the doctor came in and we were ready.  It was very quick and she was born pink and screaming.  She is still pink and screaming most of the time but, we are very thankful and blessed to have another beautiful baby girl.

Baby, Baby Any Day

It's been a long and exhausting 6 days. I've been having contractions since last Thursday. Ugghhhh!!!! I was admitted to the hospital on Friday because I was dilated to 3 and 50% effaced. Needless to say, 24 hours later I was dilated to 3 and 50% effaced.  Sent home on Saturday.  Bittersweet because I'm totally miserable because the contractions have continued nonstop this whole time, but good for baby girl.  I don't want her to come if she's not ready yet.  Today the contractions are about every 5-10 minutes and stronger so I'm going to the doctor at 2:30 to see what going on. 
The kids are doing great. Oliana talks more every week. Now she is telling me what she wants without me even prompting her!  Her speech therapist told me yesterday that she is saying 2 word sentences during therapy.  Yay!!! Kekoa is so excited for his baby sister to arrive. Every day he asks me "When is that baby going to come out?"  My mom had the kids while I was in the hospital this weekend and she told me that when Kekoa was playing his Wii game he stopped in the middle and said, "Grandma, I can't concentrate. I just keep thinking about that baby!" How cute!  I'll update again when I have more news. 

Hippotherapy (there are no hippo's involved)

Oliana had her first hippotherapy lesson today.  Hippotherapy is horse back riding therapy for kids with disabilities.  They take all kinds of kids with different developmental delays.  Oliana is going because of her delayed motor development.  The movement of the horse is supposed to help her to learn how it feels to walk correctly.  It will also help her develop her core muscles and teach her to hold onto things better. 

She was so cute today.  She hadn't ever been on a real horse, except for one brief ride on a pony at Bonnie Springs outside Las Vegas.  I thought she would probably cry the first time because she would be on the horse by herself and would have to really use all of her muscles to keep herself steady and move with the horse. There are 4 people that are with her at all times while she's riding.  One person handles the horse, there are 2 side walkers that hold onto her feet (for right now) and make sure she doesn't slip off, and one physical therapist that walks behind her. The PT watches her movements and makes sure she's sitting correctly and tells the side walkers how to adjust her position.

The PT told me before the lesson that Oli would probably only tolerate about 20 minutes of actual riding.  She said that if she had a complete meltdown before then that she would take her off.  I told her that Oli would probably complain a little because it was hard and she might be scared up there alone, but that she needed to push her a little.  Even if she complains.  Boy was I wrong!! She rode a total of 40 minutes and didn't want to get off when it was time to go home. 

They also work on speech while on the horse.  Her first 5 minutes there and she learned a new word.  GO. Oliana's PT today was Nancy.  Nancy carried Oliana up to the platform to get on her horse. Before she got on the horse I heard her telling Oli "Now when you want the horse to go, you have to tell her GO".   She had her feel the horse so she knew what it was.  I didn't hear Oliana say anything.  Nancy put her on the horse.  Oli grabbed the reins and said "GO"!!   They went around the arena a few times, starting and stopping.  Every time the horse stopped I hear Oli say "GO".  Then they went out onto the trails for a while and came back into the arena.  She did great and didn't even fuss. There was no head shaking, hand flapping, or any kind of self stim while she was riding.  Nancy asked her if she wanted more or wanted to be all done.  Oliana didn't say anything.  Then she asked her if she wanted the horse to go or be all done and go and see mommy. I hear Oli yell go and then she starts patting the horse with her hands.  Like she was saying "Come on horse. I'm ready!"  Then went around one more time and as soon as they stopped to have her get off I hear Oli yell "GO!"  Nancy looked at me and just shrugged her shoulders.  "We have to honor her request in order to teach her cause and effect."  Around they went, one more time.  This time when they stopped I yelled for her to come over and see me.  She finally consented to get off the horse and was a very happy little girl.  When we got home my mom asked her if she liked riding the horse.  Oli responded "GO!"

YOU MEAN SHE DOESN'T QUALIFY FOR SSI AND MEDICAID? BUT SHE'S BLIND...

This is a question I often get asked from family, friends and therapists. Sad, but true. I have applied twice for SSI and Medicaid for her and both times she has been denied.  Even though she's blind. They claim we make too much money. On paper this may look to be the case but, if you look at our expenses, so far in the red!!! They don't give us credit for what we actually spend on insurance premiums, out of pocket money for insurance claims, or our rent.  I actually now have to go down to the social security office and find out if it would benefit us more if I didn't work.  Can you believe that?  We might actually make more money if I didn't work, she got some SSI money and she recieved medicaid.  Right now we pay about $900 in insurance premiums for both insurances. We have to have two because Seth's is only an 80/20 and he has to carry insurance by law because he has to carry Thalia on his policy. Mine is pretty good insurance but, it is not contracted by her therapy so that's not covered and we're waiting to find out if her eyes will be covered.  It's an in network only policy and we have to drive to Dallas for her prosthetics. If we only have Seth's insurance we end up paying thousands of dollars a month in co-pays.  Pretty much what we're doing right now because of the things that aren't covered. 

I'm so fed up with this whole system!!  It's so disheartening to think that in our country we get penalized for trying to be productive members of society.  I don't want to stop working but, what other choice do I have?  When she turns three she will go to the school district and I won't have to pay anything for that.  She'll go to school in September for 4 hours a week, 5 days a week.  That will be great but, what am I supposed to do until then.  I feel like the government expects me to just sit here and do nothing for her until she's 3.  No therapy or any kind of intervention other than the measly services they provide her.  They won't even let me have double therapy.  They were providing her with physical therapy for one hour every two weeks.  Of course that isn't enough for a kid that doesn't walk and is almost 3!! So when we went for outpatient services and she qualified for PT.  She gets it at Kidworks twice a week for an hour each time.  Now the state is telling me that I can't have both.  I can either go with their therapist and get it once every 2 weeks or pay for it myself at Kidworks and get it twice a week. With OT/PT/ST that comes to $640 per month that we have to pay. 

It's so frustruating!!!!!  I have to do the best for Oliana but, why does the rest of the family have to suffer because she needs extra help in life.  And who has the right to say that she shouldn't get that help??  Certainly not some high up beuracrat with all his beautiful healthy children. Who never had to go through all this shit!!  They want to evaluate my case based on figures on a piece of paper that do not even reflect our true income status, not to mention quality of life... They even put it right in the denial letter that they did not even look at her disability, just denied us right off because of those stupid numbers!!! I'm going to call my insurance company to see if they will make an exception and cover her therapy. I seriously doubt they will but, I have to try.  There is also another program in Texas I'm going to apply for. I think it's more for kids with medical disabilities but, I'll try. That seems to be today's motto.  So, I'm off to the social security office to be fed more bullshit and become even more pissed off!!!

CHRISTMAS, KEKOA, AND ANOTHER BABY GIRL ON THE WAY....

I can't believe Christmas is over already and tomorrow is New Years Eve!! Santa was very generous with the kids and it was really neat to see Kekoa so excited for Santa to come and bring him presents.  He was so serious about the whole idea of Santa being able to watch him all the time and know if he was being naughty or nice.  If I even hinted that he wasn't listening to me his little face would drop and he would  become so sad.  He was very concerned about being the best little boy he could be in the days leading up to Christmas.  Seeing him try so hard was really really cute and I have to say that he was on his best behavior the whole month of December. Now... not so much.  He's always pretty good but, he's being a lot more disagreable than he was a week ago.
Oliana still did not quite grasp the meaning of Christmas and Santa Clause.  She really could care less about presents. Wanting more to eat the wrapping and tissue paper. Everybody did remember this year not to wrap her presents in their boxes. We learned our lesson last year when she got so frustruated opening box after box.  She really didn't understand that there were toys inside those boxes.  This year however, we just wrapped the toys so she got the reward right away.  It was much better.  Her favorite toys were her musical and sound making toys.  Santa brought her the drum set that's pictured on the left.  As you can see by the big smile on her face, she LOVED it.  Maybe next year she will understand a little bit more.

Kekoa is still a great big brother to her.  I still believe that there is just something special about him that makes him so much more protective and excited for her. Her little guardian angel on earth.  Here are just a few examples...
My mom took them both to the park a few months ago.  Oliana loves the merry go round.  On that particular day there were other kids also playing on it.  He sat down right next to her and promptly told the other little girls that Oli was his sister and he had to protect her.  That's just what he did too. He moved to sit behind her, let her lean on him, and put his arms around her.  He also gets very excited when she says a word that he can understand.  The other morning they were both in the living room while I was in the bathroom brushing my teeth.  Kekoa comes running in and says "Oliana said up, Oliana said up. Go pick her up!!"  I also hear him talking to her in the morning on the baby monitor.  This morning he was telling her she was a silly little girl for rolling her prostethic eye up. (An ongoing problem, hopefully to be resolved in February when she gets custom fit prostethics.) Or the time he came downstairs in the middle of the night to get her sippy cup of milk because she woke up and he thought she was thirsty.  He didn't even wake anybody up.  Just got the milk from the fridge and took it back upstairs to her.  The next morning I saw it in her bed and asked my mom if she had gotten Oli milk.  She said no. Kekoa was standing right next to me and said "No mommy, I got her milk.  She woke up and I thought she was thirsty."  Still makes me teary eyed to think about how sweet that was.  He hadn't even turned 4 yet.  I could go on and on with these stories but... you get the picture.

Most of you know, I'm expecting another baby girl in March.  We did go ahead with an amniocentesis to check to see if this baby had Oliana's deletion.  She tested negative. A huge load off our shoulders.  Also when they did my 21 week ultrasound they measured her eye sockets and they measured in the normal range.  They were also able to identify both lenses in her right and left eye.  All wonderful news but,  I won't be completely assured until she gets here, I see both eye balls and then in a few months when she starts tracking.  Honestly I probably won't really relax until she's at least a year old and meeting her milestones.  All part of this I guess.  We originally were not going to find out the sex of the baby but, a lab test identified me as an intermediate carrier for Fragile X.  It's complicated but, basically it primarily affects boys causing mental retardation. Girls usually aren't affected and my number is very low, kind of a grey area.  We found out the sex just to put our minds at ease.  It was strange finding out it was a girl because I really didn't think I cared either way.  Turns out I guess I cared more than I thought. I cried and cried and cried.  Not because I was sad but, more because I was sad for Oli.  I thought of the hair and make up and playing dress up and painting our nails pretty colors and dressing up dolls....All of the things that I'm just not sure Oliana will enjoy that much.  She might but, it just makes me very sad.  I thought if she was my only girl then I wouldn't have to worry about those things. We would just do them in our own special way. My mom brought up a good point though.  Now she'll have a sister to teach her things and show her things she might not want to ask me or want me to show her.  She'll probably be closer to a sister than she would a brother especially since they'll be almost 3 years apart. I'm sure I'll still cry when the baby comes out and I see her big beautiful eyes.  See her open them for the first time, the first time she looks at me, the first time I make a face at her and she laughs.  I remember filling out Oliana's baby book the day after I brought her home from the hospital. There is a question in there that asks what color the baby's eyes are. I just bawled and bawled and sobbed because her eyes were fused, she didn't have any and I couldn't see them.  Something as simple as that, you never know how much it means to have your baby open her eyes and look at you.  I waited a year for my baby girl to open her eyes.  Beautiful blue eyes.  She couldn't see me through them but, for just a moment I could pretend that she could.  I then went home and proudly wrote in her baby book that her eyes were blue.  Just like her Grandpa's, her uncle Michael's and her big brother's  The prospect of having another baby just makes me remember when Oliana was first born and I missed all of those things.  Then I just have to think of Oliana and all the special things that no other sighted little girl does.  The special bond that we have that reminds me that the eyes are not the windows to the soul.  I think of those things and it does quiet my heart.

UPDATE: To Pea Soup

So here's just a little update to my last post. I spoke to Oli's vision teacher, Miss Judy, when she came for her home visit yesterday. She basically told me what everyone else has said. That Oli does what she does because she's totally blind. She has been a TVI for 20 years and said that Oliana is not doing anything more abnormal than what all the other kids she has taught have done. She said that if she thought there was something wrong with Oli she would not hesitate to address it and that she is definitely not autistic. I told her that of course I appreciate her expert opinion but, would still like to investigate the matter a little further and get other professional opinions. So today we went for her outpatient therapy and I spoke to her occupational therapist, Miss Heidi. She told me that yes Oli does display common characteristics of sensory processing disorder but, she is blind and it is very hard to distinguish and label what is abnormal for a sighted child and what is normal for a blind child. She additionally told me that SPD is not recognized by the DSM and they are trying to get it published and recognized in the new addition that comes out in 2012. So even if I could get someone to diagnosis her with SPD it would not count as a dual diagnosis because it isn't recognized and she wouldn't get any more services. She said that in her therapy sessions they are already addressing both the sensory and the blindness issues so her therapy wouldn't change. I believe that all her therapists are addressing both issues so I'm not as concerned that we're missing something.
I also spoke to Tanya, the genetic counselor at the Albert Einstein Medical Center, today. She was the one who diagnosed her with OTX2 and the AEMC is the research hub for anopthalmia. She said that it was ironic that I called about this issue because right now they are working on a grant to address this very concern. She said that I do have a right to be concerned about Oliana's behavior and delayed speech. They have been looking at the kids with anopthalmia and discovering that some of them have sensory processing disorders, some of them are autistic, and some of them develop just as a sighted child. But, there ARE DIFFERENCES. You cannot explain all of these behaviors on blindness. Especially not the delayed speech. They are submitting their research for the grant in January and hoping to open a clinic in July. The clinic will include a developmental pediatrician, genetic counselor, OT, PT, and ST. All of these individuals will evaluate the children and decide where on the spectrum the child lies and make recommendations for their therapists and teachers. She said they have had major problems with some of these kids ending up in autistic classrooms when they are not autistic. These kinds of environments (if the child is truly not autistic) can deprive the blind child of the tactile and sensory stimulation that they need to learn. On the other hand, many blind children that are truly autistic are getting missed and are not getting the services they need.
Tanya agreed with me that, although I would love to bury my head in the sand and ignore it, we need to evaluate her and find out what she has going on and to what degree. So we will be flying out to Philadelphia in August for the clinic. She did say that it is very promising that Oliana does not just repeat everything I say. She is specific in what she repeats. If I say something that she doesn't want she will not say it, instead will just ignore me. When I get to the correct thing that she wants then she will repeat the word. She has also been signing a couple of words independently, without me prompting her. She will ask for milk by herself and she will ask to be picked up. She signs these words. I have to be careful and pay attention though. Sometimes I'll have my back turned and then when turn and look at her and she will just be sitting there patiently signing for milk. In fact a couple of times Kekoa has come up to me and said "Mom, Oli is asking for milk". Sure enough, when I look at her, there she is, squeezing her little fists. How do parents of deaf children do it?
In conclusion to my update I'm going to re post the poem that I had originally posted last year. It's about the privilege of being a mother to a special needs child. It still makes me cry and I think it's quite fitting for this stage in Oli and I's relationship. I hope you all enjoy it.


THE SPECIAL MOTHER by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth;son. Patron saint.. give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint Matthew."
Finally He passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."
The angel gasps - "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see... ignorance,cruelty,prejudice..and allow her to rise above them. She will never be alone. I will be at her side every minute of the day of her life, because she is doing My work as surely as she is here by My side."
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."

PEA SOUP

Happy holidays to everyone out there!! So we've been here in Texas for two months and things are going pretty well. The schedule is pretty crazy at times but, so worth it for Oliana. She now gets therapy about 10 hours a week, unlike Las Vegas where she got 1-2 hours a week. When she goes to school she'll get more than double that which is very exciting! She receives outpatient therapy 3 times a week, speech, occupational, and physical therapy. She has a vision teacher, Miss Judy, who comes once a week. And an Orientation and Mobility Specialist, Miss Toni, who comes once a week. And a physical therapist, Miss Theresa, who comes every other week.
Interestingly, I had a discussion with Miss Theresa today about Oliana's constant self stimulation and her inability to self regulate. I have questioned Oliana's behavior to numerous therapists and doctors for the past year or so. Only to be told repeatedly that her head shaking, oral preoccupation, hand flapping, repeating of words, and inability to initiate speech were all due to her blindness. Really, in my heart, I did not believe this to be completely true. I've always felt that there was something "different" about Oli. Something that cannot be as easily explained away as just saying it's because she's blind. I've learned of many of Oliana's peers that do not display the behaviors that Oliana does. Most of the day, if left to her own devices, she would spend her time in her own little amusement park that she has created in her head and with her body. This involves numerous repetitive behaviors such as those I described before. There is lots of head shaking (our little Stevie Wonder) which I do know is a blind trait. Lots of hand flapping and touching her face. Kekoa has tried to explain to her that she has arms not wings and she is not a bird and will not fly away despite her persistent flapping. She will repeat almost any word said to her, if she's interested but, will not initiate any kind of communication. If she wants to eat, drink, sleep, play... she will not say any of these things by herself. She will repeat the word but, this involves me running through the whole list of activities that could possibly be the answer to her frustration. She spends the majority of the day crying and throwing tantrums. Something as simple as being done with dinner sets her off into a whole meltdown. This usually means her throwing her head back against the high chair, slamming her feet down and throwing whatever is left on plate onto the floor. Simply because she is unable to tell me that she is all done eating and I haven't properly developed my telepathy yet. Usually as soon as I ask her if she is all done she will say all done and then she's better. Usually...
So today when Theresa came for her PT visit Oliana was having an "Oli day" and being completely unruly. She started telling me about this disorder called Sensory Processing Disorder. It's kind of like autism but, is not autism. Kids with autism have sensory processing problems but, just because a child has sensory issues does not mean that child has autism. Basically it involves everything I described before. Oliana craves lots of sensory input. She loves big movements, spinning, being thrown, weird tactile stuff, messy play...ect. Anything that she can get the most information from. Being blind, this does make sense. I think I learned somewhere that people get more than 60% of their sensory stimulation from vision. Obviously since she doesn't have this she seeks it out in other ways. I tend to think that Oli might be on the end of that spectrum, craving even more than the average child. It's so hard to tell because she is blind but, something is just different with her.
All this means is that we need to go to yet another specialist to have her evaluated for autism and for sensory processing disorder. Sometimes I wish I was the kind of mother that could just turn a blind eye and say "Oh she does those things because she's blind". I just can't do that to her though. As much as it completely breaks my heart to think that there might be something else going on, I have to do right by her. This means acknowledging who she is and getting the professional help she needs to make her the best person she can be. If it is a sensory processing problem then some of our techniques need to change and the way her therapists view her need to change. The way I see it now, the blindness is really a small hurdle for her to overcome. Myself and her teachers really cannot teach her how to navigate and learn in a world full of darkness until we get her out of this little world that she's built for herself. We need to address her behaviors first to be able to reach her to teach her all that she needs to learn. She can't possibly sit in a classroom for 6 hours a day and learn if all she's doing is shaking her head and singing to herself.
So... onward we go. Learning new things about Oliana and trying to do the best we can to prepare her for school next year. She really is very bright and loves to learn. It's just a matter of doing it in the right way to be able to focus her attention. And despite her seeming to be possessed by a demon some days, she can be such a sweet heart. Sometimes you forget you saw her head spinning and pea soup flying out of her mouth just 15 minutes prior.

Our move to Austin and some more test results.

We finally got moved to Austin about a week ago and are loving it here. The change in scenery is awesome. I had forgotten what it's like to live with rain, humidity, grass and trees. On the drive down here one night there was a thunderstorm with lightning. Kekoa asked me what all those flashing lights were. He didn't know what lightning was. He's also asked me why there were so many trees in one area. It was a forest. Why the clouds kept covering up the sun all day, and why does it rain so much. He has said on numerous occasions how much he loves it here and doesn't want to go back to Las Vegas. He really likes our house because it has two flights of stairs. He's the only one who likes that part. It's really nice because we can walk to the park, the grocery store, and the movie store. We did drive by the blind school too and were impressed. They're remodeling it right now, but it looks huge. We're still waiting for the early intervention program to evaluate Oliana. The lady that does the referrals was out of town last week, but is suppose to call me this week.
I did get the results back from Oli's MRI, endocrine lab work, and her pelvic ultrasound. The MRI showed that her optic nerves are no longer visible and she is completely missing her optic chiasm. This means that she will never have any light perception and is completely 100% blind. Her pituitary gland looked normal. They thought it looked small before. The radiologist said that he thought it looked good and only the bright spot of the pituitary looked a little small, but if it functioned normally it was probably normal. Not every one's looks the same. Her endocrine labs were all normal, so still no problems there. Yay!! The most shocking result was her pelvic ultrasound. When she was born they did one and told us that she had two uterus's. Guess what?? SHE DOESN'T. SHE ONLY HAS ONE!!! I don't know why they thought she had two. Maybe because she was so small it was very difficult to see. She has one uterus and two ovaries. The result was a completely normal pelvic ultrasound for her age! That was great news. So really, the only thing abnormal is her eyes and her kidneys. The geneticist said that she thought that the kidney reflux and hydronephrosis were probably unrelated since many kids are diagnosed with this and just outgrow it. We are just so excited that she is only blind. So all in all, very good news!!
One other test we got back was Seth and I's genetic results. They tested us for the same gene deletion as Oliana because I guess you can have the deletion without being affected. Our results were both negative. Neither one of us has this deletion and our chromosomes are normal. This makes it even more unlikely that we would have another child with OTX2. Another great piece of news!!

OLIANA'S DIAGNOSIS

So, after two years we finally have a diagnosis and explanation for Oliana's condition. She has a very rare gene deletion off her 14th chromosome. It's called OTX2. Only 15 kids in the world have been diagnosed so far with this gene abnormality. In some kids the gene is mutated, meaning that some of the letters are rearranged and some, like in Oli's case, are completely missing. She was diagnosed by Tanya at the Albert Einstein Medical Center in Pennsylvania. She has been absolutely wonderful and if I hadn't gotten in contact with her we would still not know what is going on with Oli. She also has a wonderful way of explaining the deletion.
Everyone who has normal chromosomes has 26. Oliana has 26. Lets think of a library. This library has 26 book shelves labeled 1-26. With Oliana, bookshelf number 14 is there and has all its shelves in proper order. But, when you look closely and shelf number 22 and 23 she is missing a couple of the books off those particular shelves. Lets say every book shelf has 10 books. On shelf number 22-23 she only has 7 or 8 books. OTX2 being the main book missing. In some kids these books are just rearranged. Like book 7 being where book 14 should be and so forth.
We did find out that it is a possibility that Seth or I carry this mutation but are unaffected. We are being tested and should find out in a couple of weeks. If we are not carriers then is it very unlikely that we would pass this on to another child. If we are carriers, then it would be a pretty good possibility. Everything that Oliana has that is different about her is explained by the OTX2 deletion. The only thing that she has that they didn't know could go along with it is her 2 uterus's. Tanya is in the process of contacting the parents of those other kids to make sure they get pelvic ultrasounds. All of the kids have pituitary abnormalities. Oliana's is small but, still functions normally. We went back to the endocrinologist and he had her labs redrawn. He suspects everything will come back normal because she's not having any symptoms. She's growing very well and is in the 90th percentile for her age. Her reproductive hormones may be abnormal which won't really affect her until she hits puberty but she'll be followed very closely. Thankfully we are already aware of this! She's also going to have a follow up pelvic ultrasound to try and identify her ovaries. The endocrinologist said that sometimes these can be abnormal and have a high likelihood of becoming cancerous so they have to be removed. She also has to have a follow up MRI just to recheck her pituitary gland. I am most interested in seeing if she is truly missing her optic chiasm. If she is missing it then there really is no chance that she has any light perception at all. The last MRI said that she was missing it.
We did take out her left prosthetic eye and left it out for a few days to see if she responded to any light. She did not. I don't think she probably sees anything.
Seth, myself, my mom and the two kids are moving to Austin, TX on October 1st!!! We're so excited. The vision services are 100 times better there and she can go to the Texas School for the Blind! It's going to be so great for her. Seth is transfering with Office Max and we rented an apartment in Round Rock. Only 3 more weeks in Las Vegas. Hopefully she'll get everything she needs and deserves in Texas.
So that's what's new. I post a new update when we move. Wish us luck!!!

Summer Days

So it's finally it triple digits here in the desert. Which means it's pool day everyday here in the Gardner household. As I've said before Oliana LOVES the water. She gets so much information with every movement in the water. She loves for me to throw her up in the air, dunk her under the water and wiggle, wiggle, wiggle, which is what Oli does best. Kekoa is a little more hesitant about the whole thing. He'll get on the steps but, that's as far as he goes. I'm hoping to do swim lessons with him to make him more comfortable. Koa has always been a little fearful of things.
I continue to be amazed at the response people have to Oli. I know she's memorable because she's blind but, I honestly think there's more to it than that. I think she would be special even without the blindness. There's just something about her that draws people to her. Just the other day we were leaving the pool and this father and his 3 kids came up to me and said, "Is that Oli?" I had never met this person and was thinking, "How in the heck does this guy know my daughter's name?" He came right up to her and said "Hi Oli, how are you?" Then he tells me that he met her last weekend at the pool. I said, "With Grandma and her cousins?" Seth and I had been out of town at the ICAN (international children's anopthalmia network) conference. The man couldn't remember who she had been with but, he sure remembered her. He just wanted to come and say hi to her. Things like that happen a lot with Oli. I guess it's teaching me to be more friendly around strangers, especially with her. I'm kind of protective of her, fearful that someone will make a dumb remark. That really doesn't happen so much anymore. Again, at the pool, there were some little girls asking questions about her. How old is she, what is her name, why does she keep splashing them? I told them that she was blind and couldn't see them but, could hear them. They looked at her and I thought, oh no, here it comes. The funny thing is, they didn't say anything about her eyes. They asked me why she had such a funny name! Kids will surprise you! They did ask me why she kept shaking her head. This is still an ongoing battle with Oli. Now when we tell her to stop shaking her head she gets so mad. She gets mad whenever I tell her no. Typical. (Kekoa right now is telling Oli to stop shaking her head. "Oli, no shaking your head!" "Mommy, Oli is shaking her head again" HA HA HA!!!)
So we went to the ICAN conference last weekend and learned so much. We learned more about the gene mutation SOX2. We think this is what Oliana has but we won't know for sure for a few more months. Basically it's characteristics include very delayed motor and speech development, pituitary and sex organ anomalies, and possibly (but not always) some form of mental retardation. Oliana is not walking by herself yet. She'll walk holding on to us but, is still very unsteady. She has delayed speech. 2 year olds usually have about 50 words and can form 2-3 word sentences. She's not there yet. She has about 10 words and has spoken a 2 word sentence one time that I can remember. She'll get there eventually it will just take her longer than others. That's why we have her in therapy and work with her at home so much. Her pituitary gland looks abnormal but, functions normally. She has 2 separate uterus's but, we are unsure about the rest of her female organs. Some girls with SOX2 are missing their ovaries. Sometimes the girls have very delayed or no periods because they don't produce enough estrogen. We're not sure yet about all that because she's to young. If the test comes back positive we'll have her followed by an endocrinologist when she gets older. As for the mental delays, we don't know yet. She's delayed in her speech so its hard to guess. She understands almost everything and follows directions. Our vision teacher thinks she's brilliant and that a lot of the weird stuff she does, she does because she's blind. When we talked to other parents and watched other blind children at the conference some kids do what she does and others didn't. Of course some of them were older and had learned proper social behavior. Shaking her head is the most noticeable. A lot of the kids did that. Oliana has her moments when she doesn't do it at all and other times, when it's loud, she does it continuously.
She's learning to go pee on her little potty so I guess that says something. I'll ask her if she has to go potty and sometimes she says yes. Other times she doesn't say anything. I go and sit her on the potty throughout the day and she usually will go. It's funny because right before she pees, she'll start clapping. When the clapping starts I know she's going to go. It's not as hard as I thought it would be, seeing that she can't walk or talk. I'm not sure how long it will be until she can wear underwear but, we're getting started.
So all in all, things are going okay. I was pretty upset to learn about the SOX2 stuff, but just like everything else we'll get through it. I've been reading a book by Patrick Henry Hughes and his father. It's called "I am potential". It's quite an amazing book. Patrick Henry was born with the same eye condition as Oli and is completely blind. He also has other physical limitations and is in a wheel chair. He is an a exceptional human being and reading his book has been quite an eye opening experience. I don't know him personally and have never met him but, I would encourage anyone reading this site to check out his book. I think I cried through most of it. It's a very touching, honest story about what it's like to be blind and in a wheel chair. Patrick Henry is a very talented young man who plays the piano and trumpet. I've had the privilege of hearing him play and sing on a couple of TV shows. His family has a great attitude and outlook on life and don't look at their situation the way most people would. He calls his blindness not a disability but, an ability. I prefer to think of Oliana in the same way. I hope to give her the confidence and independence that Patrick Henry's family has given to him. You never know, maybe some day Oliana will be out there giving performances and speeches about being a blind adult. Wouldn't that be something!!

Oliana turns 2

Oliana turned 2 on May 10th. I look back sometimes and can't remember how we even got here!! It seems like we've had her forever, but on the other hand it's gone by so fast. She had a great birthday. We just had a little party at home with friends and family. She was so excited to have so many visitors and kids. She loved the cake, of course, and the presents. Tissue paper is the best!!! We made sure this year not to wrap the toys in the boxes, but take them out of their boxes and just wrap the toys. She enjoyed opening them this year. Last year she was so frustrated by the boxes. I'm sure she didn't understand why she just kept getting boxes as presents. We're learning.
She's doing really well. She's walking with her walker and sometimes without it. She has to hang on to our pant legs to walk, but she's not scared anymore to do that. A step in the right direction. She can even stand for a few seconds by herself. She's not so scared to do that anymore either. She's talking up a storm. She repeats alot of words and says quite a few words on her own. Most of the time she'll say the first or the last part of the word. Like for "milk" she says "ka". For "drink" she says "dri". We're getting used to her language and it makes life so much easier for her to be able to communicate.
She is definitely a two year old. She wants what she wants when she wants it and if she doesn't get it, watch out!!! I'm talking about a throwing herself down, banging her hands on the floor, crying tantrum!! She's such a drama queen. When she's not happy or doesn't want to do something she sobs like it's killing her. Lets just say therapy visits are not so much fun. Mostly it's the physical therapy that she hates. She always has and probably always will. It's hard for her so she doesn't like it. I understand and feel bad for her, but we have to make her do it. If we gave into her every time she cried we'd never get anything accomplished.
Disciplining Oli is more difficult than it was and is for Kekoa. I know I don't want to baby her, but she just seems so much younger than Kekoa did at 2. We are starting to have to discipline though. She has started throwing her cup and her food when she's done. She understands "no", but ignores it most of the time. Typical for her age. She started saying no. I think that's her favorite word to repeat during therapy. She says "na,na,na,na,na" pretty much the whole time.
So we continue on with the challenges of raising two young children. Oliana has definitely become more challenging the older she gets. She gets very bored very quickly. Finding new activities and toys has become alot more work. She doesn't like to play by herself for very long. I think most of that has to do with the fact that she doesn't really know how to play. Most kids play by imitating what they see. Obviously in Oli's case she can't do this, so teaching her how to play is an ongoing challenge. She'll get it eventually. We might be insane by the time she does, but hey, as long as she gets it!! Even though she has become alot more work, she's still a wonderful little girl. She has such a great sense of humor and the best little laugh!! I continue to feel blessed every day to have such a wonderful family.

Walkie-Talkie Oli

We got a new posture control walker from Oli's physical therapist, Grace. She's doing really well with it and can now actually walk a few feet by herself using it! We're really excited! She's also getting more therapy too. She goes once a week to the hospital I work at and receives physical therapy, occupational therapy and speech therapy.

She's really trying hard to talk now. It's so cute because I'll sound out the word for her and put her hand on my mouth so she knows how to move her mouth, tongue and lips to form the word. She concentrates so hard and then tries to imitate the word. You can just see the wheels turning in her head. She furrows her brow, cocks her head and moves her mouth. I just love it!! She is doing more sign language too! It's getting a lot easier because she's able to communicate more of her needs. She signs eat, sleep, more, all done.... And she says, yes, up, mama, baby, bye bye...and a few more words that I'm not thinking of right now.

So we continue to move forward. It's soooo much easier now than when she was little. Not only because she's older but, because Seth and I have learned to just relax and enjoy having two beautiful, smart, happy children. At the end of the day, what more can you ask for?

Blind swimmer!!

Most of you know Seth and I were both swimmers in high school and college. This is a really great and inspirational story I was so excited to read!! Seth and I have talked about Oliana swimming, but we weren't sure how she would do it, the flip turns, diving, ect... This just proves that she really can do it!! This young man has basically the same condition Oli has. I just love reading about blind kids doing "normal" (hate that word too) sports that other kids enjoy. Oli loves the water and can already blow bubbles and put her face in and hold her breath. Too long sometimes, I have to pull her head up! This story is inspirational for me especially because he talks about how he has to push himself and doesn't let his blindness keep him from exploring the world. He doesn't use it as an excuse to feel sorry for himself. I find it particularly interesting that he went to a blind school first and then public school. He said that helped pull him out of his comfort zone. This is what we hope for Oli. We want her to go to a blind school first and then integrate to public school so she is not only around blind peers. She learns as much from sighted people as they learn from her. Hope you all find this as inspirational and as exciting as I do.!!!


Here is a great news story from Chester, Pennsylvania about a high school senior named Matt Wallace, who has bilateral anophthalmia.

http://www.delcotimes.com/articles/2009/02/11/news/doc4992db780983f279507622.txt

Bonner senior is a vision of inspiration
Wednesday, February 11, 2009 10:28 AM EST
By JOHN LOHN jlohn@...
CHESTER — With each stroke, the cheers grew louder and the applause inside the Widener University Natatorium became more sustained. It’s a familiar scene for Matt Wallace, a Monsignor Bonner senior. During Friars meets, he’s everyone’s favorite swimmer.Wallace isn’t a record-setter. His path from wall to wall isn’t always straight, crooked swimming a normal occurrence for the 17-year-old. In last week’s meet against La Salle, Wallace finished well behind the competition. Really, who cares?Of the thousands of scholastic athletes in Delaware County, Wallace might be the most inspirational. Born without eyes, a condition known as bilateral anophthalmia, Wallace swims in the dark. He can’t see his competition. He must be notified when to turn. Sometimes, he gets out of the water with skinned and cut hands, the result of unforgiving collisions with the lane lines.Guess what? He’s having a blast. Swimming has been Wallace’s motivational tool and a foundation for his shift from an insular environment to the real world.“Before I got to Bonner, I was in a cocoon,” he said. “I didn’t really have a concept of the real world and that’s what I’ve been shown.”It’s 40 minutes before Bonner faces La Salle in a home meet at Widener. The Friars are completing their warmup and Wallace is moving through his set in Lane 1. Nothing seems unusual. He has a good-looking stroke, better than a number of his teammates. It’s smooth, not choppy. But as Wallace approaches the wall, preparing to turn, he stands out.Nathan Stuhltrager, the 9-year-old son of coach Stephen Stuhltrager, stands at the end of Wallace’s lane, holding a five-foot long piece of PVC pipe. The end is covered in foam, and it’s this part that taps Wallace on the head or shoulder, indicating it’s time to turn. Upon contact, Wallace starts to somersault, pushes off the wall and begins his next 25-yard journey. The younger Stuhltrager, holding the creation of assistant coach Mike McDevitt, heads to the other end of the pool, ready to perform his duty a second time.For the Bonner swim team, it’s just another day.In his 13th year coaching Bonner, Stephen Stuhltrager wasn’t sure what to expect the first time Wallace wandered onto the deck. He didn’t know how he could tend to a team with 30 members, including a blind freshman. Three years later, nothing surprises him. Most important, he loves the message that Wallace sends by simply completing a race.“As a coach, my first thought was making sure we would have a safe environment,” Stuhltrager said. “A half-hour into the first practice, he was all over the lane and there was mass chaos. We had to make sure he had room, so we dedicated a lane to Matt. It’s really worked out great. The kids love him and I’ve never heard him complain about anything. He’s improved so much from his freshman year, but more than that, he’s a real inspiration.”Competing for the Overbrook School for the Blind as an eighth-grader, Wallace arrived at Bonner confident in his ability to immediately contribute. He quickly learned that Catholic League swimming and the practice demands were incomparable to what he knew at Overbrook. Still, he forged ahead and scored for the Friars in a meet earlier this season against Archbishop Carroll.While completing flip turns was a victory as a freshman, Wallace has started to dive on his starts this year. Previously, he would hop in the water before a race and simply push off the wall at the sound of the start. If he has one regret, it’s his decision to skip his junior season.“When I first jumped in the water for Bonner, I was cocky,” said Wallace, whose condition develops in the first month of pregnancy and affects about one in 100,000 babies. “At Overbrook, I was one of the better swimmers and I thought it would be the same here. Halfway through the first practice, I was hurting so bad. I called coach and told him I didn’t think it was going to work out. He convinced me not to bail out.“This has been a great experience. After that initial letdown, when I saw how much better this was than Overbrook, I decided to use it as a learning experience. Failure can lead to success. I’ve surpassed all of my goals. I’m faster than I’ve ever been. I wish I hadn’t taken last year off. That was a big mistake. I was just being lazy.”Against La Salle, Wallace far from dogged it. He contested the 200 freestyle and 100 free on an individual basis and was a member of Bonner’s 200 and 400 freestyle relays. He handled that workload in about 45 minutes. Preparing for those races, he gets plenty of help from his teammates.Before Wallace is required to report to the blocks, a Bonner swimmer finds him on the deck and escorts him to his lane. Once he climbs out of the pool, another teammate brings him back to the Bonner area of the deck.“This year’s team has been phenomenal,” said Lucy Wallace, Matt’s mother. “The atmosphere has been great. He really feels accepted.”For most of the day, Wallace wears prosthetic eyes. When he attends swim practice or a meet, he removes them, to ensure he doesn’t lose one. That lesson was learned the hard way. The only other time he isn’t wearing the prosthetics is while he sleeps.Aside from swimming, Wallace has been involved with the Blind Sports Organization, based out of Philadelphia, since he was a 6-year-old. He’s regularly played “goal ball” and “beep baseball” and his passion for sports is evident in his addiction to ESPN’s SportsCenter. He’s even dabbled in water polo, albeit in a special practice set up by Stuhltrager.So his athletes could understand what Wallace deals with on a daily basis, Stuhltrager had the Friars place duct tape over their goggles. What ensued was a water polo game in which Wallace was dominant, scoring once and assisting on the only other goal tallied. Meanwhile, the rest of the Friars were at a sensory loss, one swimmer continuing to wade through the water five minutes after play concluded, unaware the game was over.“You have a real appreciation of what he deals with every day,” said Jeremy McDevitt, a junior and Bonner’s top swimmer. “We just get in and swim. He has so much to overcome. Before I got here, I heard stories about him. Then you see him pushing himself in person and it’s unbelievable. It’s so motivating. He’s a hero to the team.”Before enrolling at Monsignor Bonner, Wallace attended only schools for the visually impaired. He spent kindergarten through sixth grade at St. Lucy’s Day School for Children with Visual Impairment and moved to Overbook School for the Blind for seventh and eighth grade. It was during his middle-school years that Lucy and Jim, Matt’s father, decided their son needed to enter a regular learning environment.“He wasn’t too happy about going to Bonner because he had found a comfort zone,” Lucy Wallace said. “But we knew he needed Bonner and as he’s grown up and matured, he’s seeing that, too. At Overbrook, everything was done for him. He has to work at Bonner. Nothing is handed to him. When he goes to college, we know Bonner will have him prepared.”Since Wallace resides in Marple Township, the Marple Newtown School District has played a key role in his education at Bonner. It provides him with a Braille Note, a computer in which Wallace keeps his homework, e-mail and assignments. The district also has provided him with a vision teacher, Jeanne Aaron. Among her duties are turning upcoming tests into Braille.Wallace’s class load isn’t exactly easy. A strong student, he’s taking Advanced Placement English and is an Honors student in his other subjects. He’s also been busy with extracurricular activities, serving stints with the newspaper and yearbook. His favorite duty, however, is his involvement with the morning announcements.Before Wallace leaves for school, he turns on ESPN or listens to XM Satellite Radio and familiarizes himself with the results of the previous night’s games, particularly those of Philadelphia’s sports teams. Wallace then goes on school television and updates his classmates on the latest news.“I needed that development and to be surrounded by kids who didn’t have the same disability,” he said about attending Bonner. “I was kind of childish. It took some time, but I’ve grown up.“And Overbrook wasn’t good for me academically. I needed to go to a place where I was going to be pushed in class. There was definitely a transition period, getting used to the tougher classes and fitting in socially.”A devoted fan of Ohio State sports, Wallace will have to buy some Cherry and White apparel next year, when he begins life as a Temple University student. Wallace plans to major in journalism, with the hope that a career awaits either as a television/radio sports commentator or as a sports writer.Think a career in sports journalism is impossible? Think again. Hal McCoy of the Dayton Daily News has covered the Cincinnati Reds for nearly 30 years. Since 2003, he’s been legally blind, the result of multiple strokes. And legendary Los Angeles Times columnist Jim Murray continued to write despite losing sight in his right eye to a cataract and sight in his left eye to a detached retina.While Wallace has no vision, it has not hindered his dreams. If journalism doesn’t end up in the cards, perhaps a career in comedy is an option.“Maybe I can’t do play-by-play, but I could be an analyst,” said Wallace, who also considered West Chester University. “Donovan McNabb and the Eagles aren’t going to win a Super Bowl any time soon. How hard was that? The reality is that I’m going to have to work a lot harder than most to get what I want. But I believe I can get over the barriers in front of me.”The day Matt Wallace joined the Bonner swim team, he wasn’t looking to be a motivational figure. That’s just how his high school career has worked out. Wallace’s story has been an anything-is-possible tale — for his teammates, competitors, coaches. Faced with a disability, he has found a way to overcome and get the most out of his high school days.All the while, Wallace hasn’t felt sorry for himself.“There are times when I wish I could see,” he said. “It would be nice if I could drive, but it’s not something I’m going to dwell on. There’s no point in doing that. The things I can do, I try to do them as best I can. With swimming, it’s a great sport for exercise and staying in shape. I’ve enjoyed every minute of it and the bonding with my teammates. I’m going to miss this.”His inspirational story will carry on.John Lohn is the Deputy Sports Editor of the Daily Times

Oliana's starting to crawl!!

Oliana is finally starting crawl. Not in the traditional sense, but hey, she gets around. She puts her hands way out in front of her and kind of scoots her knees. She rolls around too. She's finally learning where her toys are in the living room and actually going and trying to find them. She is also pulling herself all the way up to her knees without sitting her butt on her heels. We're so proud of her.
She had her first occupational therapy appointment last week. OT is more refined movement and fine motor control. Like picking things up with her fingers and things. She's doing really well with that too. She can feed herself now. We're starting to work with her on using a spoon. She doesn't quite get it yet. We learned that she needs more stimulis and tactile input because she doesn't have her sight. We stuck all kinds of fabric and braille numbers and letters to her toys. We also made boards of fabric, sandpaper, and astroturf for her to feel and walk on. She really likes it. I found out why she is still drooling too. She has floppy muscles, her arms and legs(which we already knew), and also her oral muscles. We're working on that with her too. Cold compresses to her face, teething rings, massage, ect....

Kekoa is a typical 3 year old. Getting into everything he's not supposed to. He's too smart for his own good sometimes. He's a good kid and is more and more involved with his sister. He knows all his colors, ABC's, and can count to 30. His vocabulary astounds me sometimes. He says the funniest things!! He even makes up his own words and is very imaginative. Pretending he has toys and presents and handing up imaginary things to play with. It's quite funny.

Trying to walk

My new years resolution this year is to be more involved with everyone, Oliana's physical therapy, getting her walking, connecting with parents who have children who are blind, and updating this blog more often. When Oli was first born I was part of an online support group for parents of children who have micro/anopthalmia. I recently rejoined the group to reconnect with them and get new ideas for helping Oli. And sometimes just to vent my frustrations. Let's face it, no one expects this kind of thing to happen to them. I was recently talking with my dad and we were talking about Seth and I having more kids. I told him right now I don't for see that happening. I told him that it is two or three times more expensive and more work to have a special needs child ( I like that word more than "disabled child"). Disabled to me is negative. Anyways, my dad said "Yeah, one of Oli is like having three or four children". Very true. Anyway, the recent posts online have focused on other people with kids who are Oli's age or older not walking. Seems I'm really not alone in this quest. Right now we are really trying to get her to walk with her push toy, without yelling at me, and to stand by herself. Right now she is just too afraid to do it. I'll sit next to her and let her hang on to my shirt. I'll tell her to let go and she'll just get this terrified look on her face like, "YOU WANT ME TO DO WHAT?". I try to make her feel comfortable and tell her I'm right here. I know she understands but, she just won't let go without freaking out. Her arms will go straight out, she'll gasp and then cry. Like I'm not going to catch her. She's kind of in that scared stage right now. She'll be scared of new sounds especially if I'm not holding her. Let's just say that she's a little attached to me. All I hear, and all everyone else hears is "ma ma ma" all day long.
I need ideas on how to make her less afraid and more willing to walk and stand on her own. If anyone out there has one let me know. I know she has more obstacles to overcome because of her blindness but, I'm not willing to let her know that. I don't want that to stop her. I can't imagine how terrifying it must be to not be able to see what's in front of you or around you, but she's never known anything else. So if she doesn't know it she shouldn't miss it right. Wrong. It seems that she is definitely aware that she can't see. I just don't know how to get her comfortable being on her own. For right now we'll just keep working. It's also more difficult I think, because I have Kekoa. He does feel left out alot. I'll be working with Oli and he'll come up to me and say "I want to play mommy's game". I said what is mommy's game. He said " Holding hands and walking". I felt really sad then. He thinks I play with Oli more and he's too young to understand that I'm trying to help Oli. I try to explain it, but he is just to young to understand. I try to make him a part of the therapy and have him hold on to Oli. Yeah, that lasts about 2 seconds. Then he's running off laughing. If anyone has any ideas on what to do about Koa let me know that too.

One other thing I wanted to mention, I don't know if any of you know who Ben Underwood was. He was a young man, 16, who lost both of his eyes when he was 3 to cancer. He wore prosthetics and was on T.V a couple of times because of how remarkable he was. He rode his bike, played basketball, did everything that a normal 16 year old would do even though he was completely blind. His mother said that from the moment he woke up in the hospital and realized that he was blind she made him do everything any other child his age would do, despite not being able to see. He was a real inspiration. Sadly he died on January 19, 2009 from cancer. He will be greatly missed. Even though I didn't personally know him I feel a great loss. He was truly someone to be admired. He has a web site. I believe it's benunderwood.com. Sorry for the sad news.

Time for an update

It's been a while since I've written anything. Sorry. The kids are doing great! Growing up so fast as you can see from the pictures. Oli is doing well. She got a new eye on the right side last month that finally sits right in her socket. It looks really good. She went to the cardiologist a couple of months ago and her heart is now completely normal. That was great news! She also had another test on her kidneys. She still has some urine that backs up into her kidneys so she still has to be on the antibiotic but the doctor said it looks better on one side. She'll go back and have another test when she's 3 to see if she has outgrown it yet. The doctor seemed hope full that she would. We finally got her sleeping through the night almost every night. That is so much better for all of us!! I think I've talked about this before, but your sleep wake cycle is dependent on sunlight hitting your eyes and prompting a gland in you brain to produce melatonin which regulates when you sleep and when your awake. That's why its natural to sleep when it's dark and be awake when it's light. Since now we don't think Oli sees anything at all she doesn't have that cycle. We started giving her an over the counter supplement of melatonin. She takes 5 mg every night before bed. Ever since the first night she took it she has been sleeping normally!! Yeah!! No more getting up at 2am and staying up till 10am. She actually sleeps like a normal 20 month old. She wakes up on her own in the morning and wakes up from naps on her own. It's really helped with her energy level,her attitude and she's put on some weight. She finally 20 pounds! Such a little peanut. Tall and skinny.
Speaking of energy she loves to stand and walk around the house (with help). She can stand and cruise along the couch by herself, slowly. She can push her walker and she'll walk while holding onto my hands. She's still kind of stiff legged but hey, she gets there. She was in physical therapy every week but, my insurance changed and now we have to find a new therapist. She really made a lot of progress. She can almost pull up by herself. She just needs a little boost to get her leg out from under her.
So all in all everything is going well. Kekoa is getting so big. He's such a boy. He loves that "dune truck". That's what he calls it. Santa brought it for Christmas. He's so rough with it. The faster he goes the more reckless he drives. Oli likes to ride in it until he gets crazy and goes in circles. Then she's ready to get out! It's scary to think what kind of driver he's going to be. He wants to be a race car driver. Mommy hopes he changes his mind. It's funny because he will actually sit and watch car racing on T.V. He'll sit there for hours just watching the race. Ugh!! I hope he outgrows that too! That's when mommy finds housework to do. Hey, it keeps him occupied. Terrible 3's it should be called. He's still a great kid and loves his sister. So protective of her.
So that's what's new here. I'll try not to let it go so long before I write again. Hope everyone is doing well.

Oliana's first pair of eyes and her first birthday!!

Oliana finally recieved her first pair of prosthetic eyes in May. Right before her first birthday! We were so excited. The whole trip down to L.A. I just kept trying to imagine what my baby girl would look like with eyes. What a strange concept, huh. We thought she was only going to recieve the painted eye on the right side, but suprise, our occularist Beverly decided to do the left too!

She put the one that she had made for her right eye first. It was just such a surreal experience. I just kept starring at her. Oohhing and Aahhing. She was making faces at Seth and I like, what are you two googling at? She was just so beautiful. Even though I know she doesn't see me with them, it's really nice looking into them. I find that I don't focus on her eyes as much as I do her other features to tell her expressions. I still concentrate on her eyebrows and mouth to tell what she's thinking. They do make a difference in her appearance though.

We went outside the occularist's building after Beverly put in her right eye to wait while she constructed and painted her left eye. Seth and I could not stop ourselves from just staring at her. She just looked so different to us. I didn't think it would make that big of a difference, but it did. We went back upstairs and Beverly put in the left eye. As much as a difference as having one eye in, imagine what two looked like! It was just amazing. It took a while to get used to them. We were just so used to seeing blank eyes. I only wish she could see through them. We still do think that she can see some light. She squints in the sun, which is a very good sign!! We're happy with that.

For Oli's first birthday we had a small party at our house for her with family. She had two cakes. One was a flower and one was a heart with her name brailled on it. It was so cute. We put the cake on her tray and she heard us set something down. So immediately those little hands stretched out to discover what treat we had put before her. She grabbed a huge handful and shoved it in her mouth. Her eyes lit up and she just kept shoveling it in as we quickly sang happy birthday. There was no way we could take it away from her. She loved it!!

That night Seth and I took her to the Las Vegas Philharmonic. She really enjoyed that. She listened for a whole hour. When the music started she just sat so quiet and intent and then started bobbing her head. She probably would have listened longer,but the next set was really slow and the music was integrated with a narrative. Our Oli likes loud fast music. We had a really nice day and I think she really enjoyed her first birthday.

Heaven's Special Child

It's been a long time since I've been online and many things have happened...changed...dreams are becoming a reality. Oliana continues to flourish as the perfect little girl that I have always dreamt about. Funny now as I look back, I never realized what profound, unwavering love I would be able to show my children.

Oliana is almost 1 year old. Hard to believe, I know. Much as I love having a new baby around the house I don't think there would be enough money in the world to make me go back to the first few months of Oliana's life. She is growing to be such a strong willed, smart girl and yet she has such a sweetness to her that just melts the hearts of everyone who meets her. She has touched so many lives already and has taught us the importance of patience, determination, and not being prejudice against that of which we don't understand.

Many people told us when Oliana was born that she chose us to be her parents and now more than ever, as she gets older, I find that to be true. Here is a thought from another mother who has a child with a disability. It really touched my heart. It's funny because as I read it I thought, this could have been written for me!




THE SPECIAL MOTHER by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth;son. Patron saint.. give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint Matthew."

"Finally He passes a name to an angel and smiles. "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see... ignorance,cruelty,prejudice..and allow her to rise above them. She will never be alone. I will be at her side every minute of the day of her life, because she is doing My work as surely as she is here by My side."

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Oliana and the Baby Food

Oliana has made huge accomplishments these past few months. Eating baby food was just one small feat for her. It may seem small for most people, but for a blind baby it was huge!! Not only can she not see her food or the spoon coming to her mouth, but she doesn't see other people eating and doesn't know that that's what everyone else around her is doing. For the first week that we tried she would just clamp her little mouth shut and wouldn't open for anything. Then after that she would push her tongue out and want you to put the food on the tip of her tongue, which, needless to say, didn't work very well. Finally, Seth just started prying her mouth open and shoving the food in her mouth. He would pry it open and say "open your mouth Oli" and put the food in. It sounds harsh, but it worked. After about a week of that she finally got it and all we had to do was tap her mouth with the spoon and say "open your mouth Oli" and she would. Now she loves her baby food! Good thing she catches on quick. She even grabs the spoon with her hands and puts it in her mouth to try to feed herself now too. She reaches her hands out to find my hands and when she finds them she finds the spoon and then takes over. Its quite neat to watch her figure it all out. She also has learned that I put the bowl of food on the tray. She puts her hands on the tray and finds it and has great fun playing in her food.

We started reading braille books to her. I read them and guide her hands across the braille as I read. At least I do sometimes. Sometimes she does it herself. I sit her in my lap and put the book on her lap so her arms and hands are free to roam the pages and she wishes. I put her hands on the pages so she knows right away that we are going to be reading a braille book and you should see her. Her little hand just starts waving back and forth back and forth across the page. Its the neatest thing. We only have a few braille books, but I would say that they are definitely her favorite.

Our latest trip to LA was exciting too. She got a flat conformer, or one without a peg in her right eye this time. So she's got flat ones in both eyes now. So nothing sticking out of her eyes anymore. They look really good. Her right eye is so much bigger now. It's almost the same size as the left. Our ocularist, Beverly, said that she should get her prosthetic eyes at about a year of age so only 5-6 more months to go!!!!! YEAH!!!! She's going to get green I think. Just like her Daddy.

One more piece of exciting news. She's just about sitting up. She can sit for about 10-15 seconds before she falls forward. Almost though. I'll keep working with her. Kekoa said her name for the first time today. He called her O-ee. How cute!! He's shown much more interest in her now that she's doing a lot more. He's always giving her his toys or his blanket (and he doesn't ever share his blanket with anyone). He still likes to kiss her and hug her. He's always very nice to her. I'm sure that will change once she starts taking his toys!! I'll hear "Mom O-ee won't share" HA HA!!