Kangaroo Zoo

We went to Kangaroo Zoo yesterday. The kids had a ball.

Jason in the baseball blow up toy, where he wasn't supposed to climb. Surprise, surprise!!!

Samantha does her own thing all the time. The only picture I could get of her cute face was for her to pose.
Duncan at the top of one of the slides. I think he was trying to help Tori get Jason up.
Samantha makes friends everywhere she goes.

Tori is always one to help. Jason is a natural climber. Tori had to just stand behind him just in case.All 4 kids at the bottom of the slide. Jason looks terrified doesn't he?
Jason isn't like the rest of my 17 month olds. He follows right along and joins in the fun.
Jason and my Nephew Mitch. They are starting to play really well together. It's really fun.
Here he goes!!

I've finally uploaded the pictures out of my camera!!!

This is the blanket that I made for Jason. He's been waking up a lot to get in bed with us and I finally figured out that his blanket wasn't warm enough. So here it is!

My handy husband installing my wonderful new flooring!!! Looks awesome huh?

Tori at swimming lessons. She's doing really well!!

Samantha as swimming lessons. Again, doing really well, she's even starting to listen to the teacher!!!

Duncan has decided he's a "pro" at skating. His first attempt at an ollie.
His second attempt!Samantha and my niece Hallie at the Hunter Valentines party!
Duncan and my niece Kacie. Duncan actually posed for this shot. He thinks he's funny!
Tori, again at the Valentines party.
Duncan has a pretty big mouth, huh?

Jason and my niece Taylor. Jason is looking Taylor wants food now!
Tori's Valentines box. Brett loves this time of year!!!
Duncan's valentines box. He said that he wants to extinguish the flames of love.

Duncan entered the science fair this year. Brett and Duncan worked hard, and I think it looks pretty good. He didn't win anything but for a first time I think it turned out well.

Here are some videos as well.

Vision Specialist at Davis County

The Vision Specialist called today and wanted to get some more info about the girls. She asked me to write their history so that we could go into our meeting prepared. After I typed it up I thought it was interesting so here is what I've got, so far. All I can say is, "Wow". What my girls have gone through so far. Mainly Tori, but who knows what is going to happen in the future.

Tori had her first eye appointment at 3 years old. We went to an ophthalmologist that was unfamiliar with Sticklers Syndrome and when he gave her a prescription for her glasses he was very concerned and wondered if I had had any complications with my pregnancy (which the answer is no!). We then saw Dr. Wing who has worked with my husband's family before. He diagnosed her with Sticklers Syndrome when she was 4 years old. Her prescription at her first appointment was -6.25 in both eyes. Her eyes change every time she has any type of growth. Right now her prescription is -6.75 in the right and -8.75 in the left.

February (?) of last year she had her first retinal surgery. She came to me and said that when she blinked there was something that was in the way. We got her in immediately to her ophthalmologist at Primary Children's Hospital and Dr. Dries advised us that she had a tear in her retina and we would need to have surgery immediately. We then went over to the Moran Eye Center where she met Dr. Bernstein who perfomed the retinal surgery that evening. They performed Cryopexy (freezing of the tear) in her left eye and fixed a Scleral Buckle to help to hold her retina in place as it healed. They also checked her right eye while she was under anesthesia which proved to be starting with some small holes in that retina. They were able to Laser the small holes closed.

November of last year she said she was having problems seeing again, so we took her to the emergency room at Primary Children's Hospital. The on call resident ophthalmologist came in and found some small tears beginning and advised us to keep Tori down until the following Monday when Dr. Bernstein could see her again. She then underwent a full Vitrectomy, where they drain the Vitreous and reseal the tear. They inject a gas bubble in the eye to keep the retina in place as the eye fills up with fluid.

Because of the Vitrectomy she has developed a Cataract. March 26th she will be undergoing Cataract Surgery. As well as another partial Vitrectomy, she has a small amount of Vitreous still in her eye and blood clots which are obstructing her vision.

Samantha was taken to Dr. Dries at Primary Children's Hospital when she was 18 months old. She was diagnosed with Sticklers Syndrome that first visit. Her prescription was -8.75 and has changed as she has grown. At one point her prescription was -10.25 but at the moment she is -8.75 and -9.75. She is undergoing patching in her right eye everyday since her left has always been stronger then her right. It seems to be showing improvement. So far Samantha has not had any Retinal detachments but my husband and I are on constant look out for the first signs of any trauma.

Samantha is constantly covered in bruises on her knees because she falls a lot. She runs into things that are not in within the vision of her glasses. I asked her one day why she has so many bruises on her knees and shins and she said, "Mommy, sometimes I fall down a lot."

Well that's what I have so far for the girls "History". Breaks my heart sometimes but the girls are awesome and resiliant.

Vision Social Worker

I got a phone call from Cinnamon another Social Worker at the Moran Eye Center. She said that because of Tori's age they will have to go through the school district. LOL!! That's exactly what I was looking for. She spoke with the Davis County TVI (Teacher for Visually Impaired, I think) and they will be contacting me soon.

It's not what you know! It's who you know. You just have to find the right channels.

USDB

I took the kids out the the Utah School for the Deaf and Blind for a hearing test for Jason. The first thing they do is check his ears and do a tempanogram to see if he has any fluid building in ears. He does, so we have a doctors appointment today at 4:00 pm to see if he has an ear infection and had to have the appointment rescheduled. That's the way the cookie crumbles I guess.

Tori's Upcoming Surgery

Well I made another visit to the doctor today. Tori and I made the trek in the snow to the Moran Eye Center to see Dr. Bernstein. She was great as always and let them poke and prod her eyes as necessary.

We got to the office a little early, and hung for a minute for them to be ready for us. They checked her vision and it appears that she will not need a different prescription for her soon to have contact. Then Dr. Bernstein came in and looked at her retina's which are just fine, by the way. Then we discussed her upcoming surgery.

She will be having Cataract surgery March 26th. This will of course be after our Disneyland trip that we will be undertaking soon. She will have two procedures. Dr. Bernstein will be removing some remaining vitreous that he couldn't get to with the last procedure as well as some blood clots that are not going away. Then Dr. Crandall will be doing the Cataract surgery. She will have a lens implant so her vision in her left eye will be great! She will then have to use a contact in her right eye, until by chance she needs another cataract surgery in the future, which they would give her a second lens implant then.

We also met with their low vision social worker. She is getting the girls set up with the state for some benefits, ei: cooking classes, support groups, music classes, etc. I figure if we get them set up now and the girls want to utilize them in the future, great! It will also make Braille Services that much easier to obtain.

Tori is doing well, she is excited for contacts. She is a bit nervous about going through surgery again, which is understandable. We continue to encourage the strength that she is showing and give liberal hugs and kisses as needed. Thanks for all your support, and keep us in your prayers.

My Sweet Babies

Our ward has had another blow. Our Awesome Bishop has lost his wonderful Wife. She passed away Sunday morning, due to cancer. She was the most giving person and did anything for anyone.

My kids said that we needed to make the Bishop cookies. I told them that would be a good idea and we would do that this week.

Well, they took it into their own hands to try to make our Bishop feel better. I let the kids walk to The Apple for a treat today. This was the first time that I've let them go by themselves. On their way home, they stopped at the Bishops home and gave him a chocolate doughnut and a root beer. I'm not sure if the Bishop likes either of those, but I'm sure their gesture will not be missed.

What a great example they are to me, to help those in need! Not just physical, but emotional as well.

Tori and Samantha

I know I haven't updated this in a while. I was going through a moment of self pity!!!

After much prayer and contemplation, we have started the process of Braille Services for the girls. I have asked everyone that I could think of with similar issues to my girls and the consensus is that it would be beneficial. I think it might be a bit of a fight, but we'll see what happens.

The reason we even thought about this is I met a lady through one of my friends, her name is Marla Palmer. She is on the board of Utah Parents of Blind Children. It's a group for parents with blind children obviously, but also for Children who are visually impaired. She brought the option to my attention after discussing the girls issues with her. She stated that it is better for them to learn Braille now because they are like sponges and they will learn it faster now then when they are even teenagers or adults. She also says that It's a great option for when their eyes get tired. Tori comes home from school some days and it breaks my heart. She has great big circles under her eyes and she has the beginnings of a headache. This is only in 3rd grade. I can't imagine how hard it's going to be when she is in High School or College.

I have always felt that Tori and Samantha are amazing and deal with there vision problems like there is nothing different about them. They are talented, compassionate, intelligent, friendly. I could go on and on. Not once have I considered my kids disabled. Paula from the school for the deaf said to me once, that I had "three kids with disabilities." I laughed, because my kids aren't disabled. But, according to state laws they are. Which means to me, that I'm going to take advantage of every program that I can to benefit my children.

I read an article that stated 70% of blind adults are unemployed and living off the government. http://www.sltrib.com/ci_11604505?IADID=Search-www.sltrib.com-www.sltrib.com Even if this is not completely accurate it hit me! IF something were to happen to Tori or Samantha when they are in college or even older, how are they going to be independent? I know I don't like to rely on parents, I don't think they will want to either. Thus, Braille Services.

The biggest road block will be getting the lady from the district to approve it. But Marla knows a lot and is willing to help me with the Law mumbo jumbo. Also, Lisa who is a cousin and the kids Nurse Practitioner is going to write a letter explaining Sticklers Syndrome and what it entales. We are also going to get a letter from Dr. Dries stating "It's not if it's when they have a retinal detachment." He says that to me every visit!!!

If you are wondering my pushing the Braille when my girls can see, well don't. Tori has had 2 retinal detachment surgeries already. I want my babies to be able to take care of themselves and there own. I don't want to have them come to me one day and say "Why didn't you....?" I pray about what to do with them all the time. I try and stay in constant contact with my Heavenly Father to help me with these kids. I love them and will do the best I can for them. I hope that everyone will be supportive and encourage the girls to do well.

I'll keep you posted on the inner workings of the Davis County School District. =)