This trip was full of sleepless nights, stress, and being on the Go! I am really glad it is over and WE SURVIVED!!!! This is how my trip went...
FRIDAY NIGHT: Halloween...fun, fun, fun, but we get to bed too late!! Way too late!!!
SATURDAY: 4:30 AM wake up to catch our flight!! WAY TOO EARLY!!!!!
We were traveling most of the day Saturday. Bonnie picked us up from the airport and we got to their house about 5PM.
SATURDAY NIGHT: Jayden and I were up all night. He was crying because his stomach hurt. NO SLEEP! Really, I mean none!!!! He said he was praying all night to Heavenly Father to make his tummy stop hurting.
SUNDAY MORNING: Go to Church!! Jayden slept through all three hours. NO SLEEP FOR ME. But church was a great experience! Bonnie and Lynn serve in a Downtown Detroit ward and it was fast and testimony meeting. I knew it would be interesting when the first testimony the lady was using the word Jack___ over the pulpit. After Church we spent the day hanging out with Bonnie and Lynn. I really don't know what I would do without them. Thanks for taking care of us again!!!!!
SUNDAY NIGHT: Jayden crying again, this time really bad about stomach pain. Jayden asking why Hevenly Father didn't make his tummy feel better. Lynn takes us to the ER.... after about 3 hours, a urine test, and x-rays.....we find out Jayden had lots of gas in his tummy. Poor Jayder-bug. RELIEF.....then anger...dang...how much will that cost us!!!! Our medical bill are enough already!!! We finally get to bed about 12:30 or so.
MONDAY MORNING: 4AM Hailey wets on their sleeping bag, blankets and floor!!!!! Wake up and wash her and try to clean up. REALLY, REALLY tired!!!!! Try to get more sleep.
We had to be at the Hospital at 11:30 for check-in.
The procedure went well and the staff was really quick. We got right in which was nice because Jayden and Hailey we both fasting!
The kids came off the the anesthesia really well. Actually, it was like they had the best nap in their life. They were full of energy and ready to eat then play!!! I was ready for bed!! Bonnie took us to Red Robin - Jayden's choice, and we got full, WAY TOO FULL.
MONDAY NIGHT: The kids get lots of energy out outside with Bonnie, THANKS BONNIE! At about 11PM the kids finally fall asleep and I think we will have a nice night to sleep...event free. PULL-UP for Hailey just in case.
TUESDAY MORNING: 4AM, on the nose, Hailey wets and it leaks onto the bed. Dang!!! Up bathing her and washing sheets. She hardly ever wets anymore, I don't know what was up. By the time I was done with that I only had 45mins until my alarm would go off. We had to be up, ready, and packed, to leave at 7:30AM. More tests at the Doctors office and then strait to the airport to go home.
TUESDAY: Hours of tests and waiting at the Doctors. The kids are restless and tired of being still. We grab Subway and then off to the Airport to catch our flight. Bonnie took me to the Hospital and the Doctors and stayed with me. SERIOUSLY an ANGLE!!!! I promise it wasn't as much fun as it looks!!
After a long flight we make our connection in Denver and I thought I only had a hour to go. When the flight attendant announced just under two hours for the flight I started bawling. I was tired not only from the lack of sleep and the traveling but from all of the mixed emotions. I didn't know if I could handle much more. Luckily, Jayden and Hailey fell asleep.
When we get there I was thinking YES.... finally!!!!!!! I had to pour water on Jayden to get him to wake up and we headed out to the curb. Judd was going to pick up the kids and then drive around while I got the car seat and the bags. We get to the curb there was no Judd. The kids were crying, they wanted me to hold them. Through the glass doors I see the bags coming out so we run in and get them. Jayden continued crying because he was so tired and I wanted to cry but I was too mad. We come back out to the curb ...still no Judd. My cell phone was dead, OF COURSE! We wait 41mins on the curb for our 15min ride home. Needless to say I was a little angry!!! Don't worry, Judd was really sorry and we already made up.
This is Jayden and Hailey waiting. If I could have fit I would have been on the curb with them. Too bad for Judd I have a picture ....one of his worst husband moments ever.
RESULTS: Hailey had no fluid behind one eye and only a little bit behind the other!!! One of her retinal folds had flattened out and the other was reduced by 50%. Yeah! The Surgery worked! Great news!! .... BUT....I understand something now that I didn't understand before. Hailey has an under-developed posterior (back) of eyes. This under-development is causing the pressure in the eye which is causing the Retina to detach.
I knew all that but this part I didn't know. Along with this under-development she has Fovial Hypoplasia. Which means under-developed Fovia. The Fovia is your central vision where your optic nerve leaves and where all vision signals come. This can cause reduced vision and there is nothing they can do about it. FRUSTRATION!!! I thought that if her retina layed back down she may have normal vision with her corrective lenses. She is seeing 20/100 right now and may never see better than that. I don't want to sound un-grateful, I am really glad that her retina is responding to the treatment, but just bummed to understand the other effects of her problem. Dr. Trese still can not tell me what he expects for her long term. He said there is just not any research to go by.
Jayden has the same structural problem with his eyes with the small back of the eye and the under developed fovia. He does not have the presser problem though, which is good news. I was not prepared to hear anything about Jayden. He is seeing about 20/60 right now. In the exact words of Dr. Trese..."He will live a very high functioning life, he may not want to be a micro-surgeon or a jet pilot but there are many other jobs he will be able to do. He probably will not drive." Disappointment!!
Good News: Hailey did so well at her office visit that Dr.Trese thinks he can do the tests next time without putting her to sleep. My next visit is on April 7th and I don't plan on thinking about this whole thing much until then!!!!!
Thanks to all of those who have been praying and fasting for my kids and their eyes. We love you all so much and have really needed all your support. Special thanks to Lyndi and Leslie for watching Derek and taking care of Judd while I was gone.
Jayden's first school program was so cute. It was all patriotic songs to celebrate Veterans Day. It was nice that the 4th grade and the Kindergarten were combined for the program; we were able to watch Eden at the same time.
I was on the front row watching and during the flag ceremony I was trying to help Derek and Hailey and Jayden yelled out to me "Mom you are supposed to put your hand over your heart!!" It was really quiet and many around us knew who he was talking to. It was really embarrassing!
