Eye appointment update

We went to Ellie's eye appointment in Iowa City on the 20th.  So we got good news! Her eye has improved considerably.  She is seeing 20/30 out of her right eye which is the one we are trying to get back to 20/20. It's so close.  Her left eye still sees 20/20 when it's not dialated. But we dialate it every day so the right one can work hard and improve.  So he said her seeing 20/30 should not be affecting her learning like we thought it was.  Now I'm sure it's hard to see out of one blurry eye and one clear eye. The past year and a half of school with her eyes this way has probably hindered her learning some but the doctor doesn't think this is a huge problem and shouldn't be keeping her from learning. So we don't have to decide to stop treatment and get her glasses or keep treating and deal with her struggling at school.  This was a decision I didn't want to make. 

So we know it's probably a combination of eyes, hearing and possibly some learning problems that has kept her behind, or not learning at a speed as others.  It's ok, there are options for her so we will just get her set up with some special learning and she'll hopefully ge caught up!

Thank God for the answers!

Elf Yourself

My brother did this on his facebook page with him and his son Hudson so Ellie and I made one with our family plus Mickey Mouse. Hope you enjoy! It's fun! You should try it!

Thank you

Thank you all for the kind words of support after my last post. Everyone said something that was encouraging and very helpful.  I know God has put you all in my lives to say the perfect things at the perfect times. Thank you again!

8 month check up with Otolaryngologist

So we made another trip to Iowa City today.  It has been 7 months since the nerve graft surgery.  Dr. Gantz was hoping to see improvements by now and he sure did.  First we were visited by a resident and he did some tests on Ellie and looked in her ears and stuff. We got to see inside Ellie's ears while he was looking in them with the camera.  I was nervous we'd see a bunch of wax but we didn't, her ears were clean! Her ear drums are looking healthy also the doc said.  Anyway... Ellie was in a goofy mood so she decided to hide from Dr. Gantz behind me in the chair.  So Dr. Gantz found her and she hopped up in the chair to make all the silly faces he asked her to make.  He was so happy to see her progress.  He was smiling, excited and so happy! He went to get Dr. Mowery, the lady doctor that has a fellowship with him now, to show her Ellie's progress.  It was nice to be at an appointment where a doctor was celebrating about how well things are going instead of talking about what needs to still improve.  It was really neat to see a world renouned doctor celebrating over one of thousands of successful surgeries he has had.  I could tell he has his heart in his work. It's really heart warming to see a doctor this way.  Praise God for a wonderful appointment with wonderful progress!

Now Monday we got to a stressful appointment.  Ellie has to see the eye doctor.  This one isn't as good news because her eye sight in her right eye hasn't been improving like we hoped so we are going more frequently to address this issue.  Her poor eyesight has hindered Ellie's learning we think.  The teachers think this because she isn't picking up on her letters, reading and math as well as they would like to see.  She also has trouble hearing sometimes which hinders her learning also.  She has started going early 3 days a week to get one on one help with reading. It hit me hard again when after conferences we learned Ellie was having trouble and it was due to her health concerns.  They got the tumor out and all, I can't be more thankful of this, but now her hearing loss and eye sight is hindering her learning and she is going to have to deal with this for years I'm afraid.  I just wish she didn't have to deal with this. It's hard to hear her say she doesn't like school because it's hard.  It's hard to see her not want to try to read with us at home.  She wants me to spell things for her instead of her figuring it out.  She is struggling and this hurts.  She is only in her second year of school and this is the foundation of her future years of school.  I fear if school is too hard for her now and she struggles every day she is not going enjoy school in the future which will only keep her behind.  The doctors said they can work on her eye sight weakness until she is 9 years old until they just give them glasses and live with the sight she has.  I can't do this for three more years of fixing her eyes, 3 more years of her having blurred vision and risking her learning.  That would be five years of school and too much of a foundation to loose interest and I'm afraid it will affect her for the rest of her life.  I want a strong foundation where she can see well and hear well so she can learn well and enjoy school.  So this is what we will be talking to the doctor about next week.  Please pray for us as parents to have the insight needed to make decision for Ellie's best interest.  Please pray for insight on the part of the doctor's to offer the right solutions to work toward Ellie's restored eye sight.  Pray for improved eye sight for Ellie so we can stop dialating her good eye which makes her see out of two blurry eyes.  I can't imagine the blurry life she lives and it makes me sad thinking about it. This has got to be hindering her learning of her letters, words and math.  No child deserves to go through this and Ellie's condition isn't even that bad compared to other kids. 

Well this was a good day and this started out a happy blog but now thinking about the appointment coming up where we always get news that there needs to be improvement it's ended in a bit of sadness for me.  Thanks for giving me a chance to process my joys and my sorrows with you.  Thanks for letting me be vulnerable and supporting me/us after you read my thoughts.  I am so grateful for Ellie's health but seeing your child be so healthy and still have problems that's affecting her learning, which then affects her whole future school life, due to the health issues is very hard for me some days. 

In January on the 25th we have another follow up MRI and we return on the 26th to get the results and see her oncologist Dr. Bautti and her otolaryngologist, Dr. Gantz, again. Now we have to do the MRI on one day and get the results on another because Dr. Bautti changed his clinic days, which are not days they do children's MRI's with anesthesia.  Do they realize this means families have to wait 24 hours to get results of their child's MRI's.  I foresee this being very hard.  So we have to miss two days of school which further puts her behind which stresses me out even more so I'm going to stop now.

Good night.

Here is a picture of Ellie's standing by a huge Christmas Tree in the Coralville Mall today after her appointment.  I like how well you can see her smile coming back.  I love it!!

Anybody want to spend some hours each week with that pretty face, Ellie, during the summer days working on reading and math skills to get her caught up to second grade level? We have fun games and activities for her to practice with.  :) Yes I'm thinking way ahead... sorry.

Magical Mix Kids website

At this link you can see a group picture of most of the kids that went on the trip to Disney World this year. Ellie is in the lower right side of the picture with Minnie ears on.  Nathan decided he didn't want to sit to be in the picture.  So he missed out.   http://www.magicalmixkids.org/  Enjoy!

Grand news!!

Lately Ryan and I have been noticing a slight change in Ellie's mouth, cheek, etc.  There isn't as much drooping of her right side.  So Tuesday I asked her to try to move her mouth by pushing her tongue on the inside of her lower right jaw. She did and I saw the corner of her mouth move up slightly.  So the good news is that the nerve graft surgery is now taking and she is able to begin to move her mouth.  The doctors say it will just take time and practice to see more improvement!! This is so exciting to see, only five months out of surgery.

MGM Hollywood Studios

MGM Hollywood Studios is where we spent Tuesday. In the morning there was an opportunity for the families to see the radio station and speak about the trip. So we waited our turn and Ellie did a great job talking. I was sure she'd be too shy but she shined! This is Ellie looking at a park map before her turn.

 Also on Tuesday was the Mickey character greeting. This is where the kids got to meet Mickey and get pictures with him. Here is the fam with Mickey.

 Ryan, nurse Ann Marie and Dr. Kim Neumann visiting with us while we waited our turn to be on the radio.

 I caught a picture of Ryan wearing Nate's pirate Mickey ears.

 Daddy and his princess in her Minnie ears.

 All the kids with Mickey.  Nate didn't want to stay in the pic.

 We went on the ride called the back lot tour, or something like that. So these are wierd looking props used in past movies.

                       We saw Mike from Monsters Inc.

                           Miss Piggy's fountain.

                      Lightening McQueen and Tow Mater.

 The monsters were at this part of the Block Party we saw right before a rain storm that stuck around the rest of the afternoon.  This started as a parade, then stopped and it turned into a block party with trampoline stunt people, dancers and green army G.I. Joe guys. Other parts of the parade/Block party had different characters to enjoy. This was a very up beat musical party that was prety fun!! At the end they threw balls at us for the kids.

 We found a building to get in out of the rain and it had many many characters that all changed every half hour.  Here is Handy Manny. One of Nate's faves!

 Ellie got so excited jumping for joy when she saw June and Quincy from Little Einsteins.  She used to watch these guys every morning and weekends. She loved this cartoon. Her pics with Annie and Leo didn't turn out clear.

 Characters from The Incredibles. We haven't seen this movie though.

               
                    The wonderful Snow White!
                                           
                  Mary Poppins and penguins.
                                          
                              Chip and Dale

                                        Mulan.

 We saw a stunt show where this red car races around this set being chased by four black cars.  This is the end where they reveal that the red car is really 3 red cars adapted in different way to drive backwards and split in half the long way with a driver on the outside. 

 On the Back Stage Tour ride we went into a cave and saw this truck sitting up there. Then a fire began and explosions....

 ...then water came rushing down...

 ...and over us.  Thankfully we didn't get wet.

 This is the stunt car jumping.

Hollywood Studios was a place we could have spent two days. There were so many great shows to see here we didn't get to do it all.

Animal Kingdom

Thursday morning was our group's character breakfast at a restaurant at Animal Kingdom.  We saw Donald outside then inside while eating Mickey, Goofy and Daisy came by for individual visits to tables. It was yummy food and fun for all. Then we spent the rest of the day at Animal Kingdom. I loved this park. The 3D shows were fun and great.  The live shows were amazing also.

 Ryan being silly trying to give Ellie a kiss for the pic but she's trying to get away.

 Ellie and Luanne. Luanne was our chaperone that checked in with us and helped when needed.

 On the truck getting ready for the safari ride to see animals!

 Another breakfast pic.

 A few of the animals we saw on the safari.

 The tree that was intrigueing to look at.

 A humongous bat sleeping hanging upside down. This was wild to see all the bats hanging upside down.

 Now you will see an assortment of pics of Ellie and Nate wanted to take posing around the park. Some are really funny...

...like this one.

 Now Nate wants a pic by himself like Ellie had. Look at those eyebrows.  Daddy's prominant eyebrows.

 The 3:00 daily parade was amazing. Here are just some of the pics I took.

 Amazing costumes these people walking on stilts are wearing.

 Elaborate bikes the front people were riding. Beautiful work.

 Mickey's truck.

 Goofy's truck.

 Mickey's Jammin' Jungle Expeditions.

 Nate thought Ellie needed a hug I guess. It was so sweet. Gotta love the goofy hat he insisted on getting.

 Oops another breakfast pic.

 The Animal Kingdom entrance.