This is the story of my daughter Oliana who was born blind. To read her complete story start with the blog titled Oli's birth. You can email me at shannongardner@live.com



Friday, April 8, 2011

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.

Thursday, March 25, 2010

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.

Tuesday, February 16, 2010

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. 

Tuesday, January 12, 2010

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!"

Friday, January 8, 2010

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!!!