This week is a very busy week. This morning Seth had an appointment with a therapist who is getting him the happy chair. I can not wait to get this and get him sitting in the right position. When she checked Seth out and looked at his back she said he already has beginning stages of scoliosis which I just did not want to hear. His ribs on one side are more pronounced and he does in fact have the rounded back. She said if we can get him in this seat and work on getting his pelvic bone in the vertical position he will be good. She believes that he will be able to walk if we can just get him sitting. This chair is amazing and when we get his back positioned correctly he then can start standing up on his own and then we can work on walking.
Tuesday we have a urologist appointment and they will do an ultrasound of his kidneys and ureters. He had the corrective bladder and kidney surgery in October 2010 and we had an ultrasound Jan 2011 and his kidneys were still enlarged so he wanted us to come back in a year and get them checked out again. Praying we have no kidney damage and that we can stop giving him the antibiotics. After that we need to get our butts home cause he has therapy at 11.
This Wednesday we have another fundraiser for Seth at Cold Stone which is 2 days before his birthday so its a fun little event for him. If you have time and want to celebrate his bday with us come one down. Its on Valvista and Baseline. Before we head over to cold stone we have occupational therapy in the morning and then we will make it out that way for some wonderful ice cream.
Thursday I have another urologist appointment but this time it is for Ember. When Sydney was 3 months old she ended up in the hospital for 3 days with a UTI. They found out there that she had kidney reflux. It is graded on a scale from 1-5 5 being the worst. She had grade 3 on the right side. She out grew hers when she was around 1 and we were able to go off antibiotics. Seth we found out had it as well when he was in the NICU. He had grade 4 on the right side and grade 5 on the left. When you have anything above 3 you will most likely not be able to out grow it and will need corrective surgery. If you have grade 5 you will for sure need surgery. They sometimes try to do other things like deflux gel balls to help but it did not with Seth and he needed the surgery. So when Ember was 2 days old I asked the hospital to run the test because I did not want to take her home and end up back in the hospital because of a UTI that we could avoid with antibiotics if she has kidney reflux. Sure enough she as well has it and she had a grade 2 on both sides. Thursday they will do an ultrasound and see if she still has it or if we can take her off the antibiotics as well.
Friday Seth turns 3. I am not sure what we are going to do yet. I am so bad with birthdays and always wait until the last minute and then I never do anything. If we do something we will probably have a few people over and go swimming and have some pizza.
Mike and I are trying to plan our birthdays. 30 years old for the both of us...I still can not believe that I am going to be 30! I think I have a great idea for his I just have to finish some last minute details before I know if it will for sure work out. Next week we have an important appointment for sure regarding the ketogenic diet. We have been waiting for over 2 months for this and I would love to get it started so that we can find out if this is going to work for him or if we are gonna have to do something else. I am not looking forward to this diet at all so please pray for me when you think about it. I am having a hard time with the fact that he will probably not take the bottle to eat the food and we will have to go with the g-tube all the time and I just really do not want him to lose the ability to suck. I know that sounds so stupid and that stopping seizures are so very importants but it is still very hard for me to let that go.
Here are some pictures to hold you over :)
Sydney and Em at one of Seths appointments
Her sad face and to me it is so stinkin cute.
Seth playing in his bed. We took this with his new monitor we got with some of the money from the hunger games fundraiser. We love it so much and we can see him so good. We are going to mount it above his bed so that it will look down on his so that we dont have the netting in the way.
I saw this shirt and I HAD to get it for Seth. It is one of my favorite shirts :)
Muffin
On the way to Chicago. I will have to do another blog post all about Chicago. We all had a great time and I got to spend time with family that I have not seen in a long time!
Sydney and Jessie. Matching Jammies and they did their nails. So cute!
American Girl Store. My wonderful cousin Jen got sydney a special day at the store. She got to have lunch with her doll. Pick out any doll she wanted to buy. She got some clothes and a dog and she got to do a photo shoot with the doll and pet. She also got to have her doll go to the salon and get her hair done. She had so much fun and I was seriously in Heaven. I love the american girl dolls and I have the 4 original ones and I just thought it was such a cool place. I can not wait to go back there again.
Seth finally got his stander that we ordered in April 2011. We got the actual stander in Oct 2011 but with the wrong parts. The last week of May 2012 we got the correct parts! FINALLY!!!
So stinkin cute I just want to eat him!
At the neurologist appointment and he was so happy that I had to get a picture of him. PRECIOUS!
On the last day of preschool Miss Sonja did some amazing face painting! She was so in LOVE with her unicorn.
