Two weeks ago we had an appointment with a physical therapist who created 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 as well. 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.
On June 19th we went in for his urologist appointment and ultrasound to check how his kidneys and ureters are after the surgery that was in Oct 2010. We got there and they were behind which is always fun when you have Seth who gets bored easily in his stroller so I had to be the bad mom who lets their kid crawl on the doctor office floor...yuck! So we did the ultrasound and then got into a room for his appointment. Dr. Bailey's nurse came in to talk to me which was fine because I really like her. When she walked in the first thing she asked was how was he feeling and had he had any UTI's (in my head I am thinking he shouldn't have any cause you fixed the problem) and I knew at that moment something still was not right. Well she started to tell me that his right kidney and ureters (grade 4 before surgery) are perfect and everything is looking great there but the left kidney (grade 5 before surgery) and the ureters and enlarged and worse than before the corrective surgery. My first reaction was are you serious...she said yes. She said most likely there is a blockage it happens in about 1% of the kiddos. Great, Im thinking well perfect my kid once again gets in that wonderful 1% range. We have to get two tests done a MAG3 and a VCUG before our July 10th appointment. The tests are going to be on the same day at Phoenix Childrens on July 5th. They are going to put him out for the MAG3 test which takes about 2 hours and then wake him up and while he is still kinda out do the VCUG test. We will then get all the results at our that following Tuesday and they will tell us what is going on and if he will need to repeat that surgery he had two years ago. That surgery has been the hardest one that we have had to deal with and I just really hope that we do not have to do it again.
JUNE 22 2012 Seth turns THREE!!!! Are you kidding me?!?!?!?! I can not believe that my little muffin pie is 3 years old. He is such a happy little man and we love his so very much. He is the strongest, bravest, happiest little boy I know and he amazes me every day with what he goes through and how he can just smile when he hears your voice. I love him with everything I have and he warms my heart. Mike had inventory for work and was home by 1. We went and got some cupcakes even though he was not going to eat them :) and ate some dinner and my mom and dad came over to help put up his cool swing and take the kids swimming because that is what Seth loves to do.
When I went in to get him out of his bed on his birthday. He was so happy!
On our way to the pool.
In the pool and the kids had so much fun.
The swing that grandpa hung up for Seth
Here he is inside it and he LOVES it!
On Thursday June 28th we met with the dietitian about the ketogenic diet and getting him started. We had to get so much blood work before the appointment and he also need two urine samples one for a culture and one that checks how his metabolism works I forgot to get that one so they can not start the diet until they get the results from that test. Anyways this diet is crazy. For this one reason I am glad that Seth still drinks formula and is tube fed because doing this diet for someone like sydney would be CRAZY (you have to make sure there is only 2g of carbs in the food daily and NO SUGAR-if there is they could cause seizures if the diet was working and kept the seizures away. Also you have to weigh the food and the kids have to eat everything off their plate) Anyways for Seth he will be given ketocal which will take the place of his pediasure and we are praying he will take it from the bottle. If we want to do any food or food play we have to buy a scale and they will provide us with some recipes and a certain heavy cream that we mix with foods so he can eat that for like feeding therapy and stuff. We got a 16 page list of the products that he can use. If it is not on the list we can not use it. Here are a few of the categories that we have to make sure we have carb free and sugar free. There are more but they do not pertain to Seth right now like deodorant.
Shampoo
Conditioner
Body Wash
Sun Screen
Toothpaste
Lotion
Bug Spray
Baby Wipes
Baby Rash Cream
If we start the diet and notice the seizures stop and really slow them down and then we accidentally use a product with sugar or carbs it could cause a seizure and they are normally pretty big ones that need medical attention to stop the seizure so we just have to be very careful that we follow what he can use and we make sure that if anyone is watching him that they do that as well. In the early stages of the diet if we forget it is not as big of a deal because it takes a few weeks for the diet to start getting into the system and start the process of ketosis. Here are a few extra pictures I have taken lately. The ones in the stander are so cute and that day he spent 45 minutes in there and did not complain once. He played and had so much fun doing something other than laying around.
Laughing
So adorable
This past week Melanie his OT came over and wanted to do some messy play with Seth. He loves it and she even got some frosting in his mouth which he did not like very much but he did swallow it! He had a blast making his highchair a mess and getting frosting everywhere.
This is his "what are you making me do" kind of face.
