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.