Thursday, November 13, 2008

Change is a coming...

So as we look forward to the next four years of a new President, the first African American to lead our country, things are changing within our family.

Lauren's body seems to be changing. It seems she is suffering from low blood sugar more often than before. She tires out alot easier now. It worries me because she never really had problems with her blood sugar. She is still having the muscle breakdown daily. It seems there is no end in sight as far physical therapy. The geneticist confirmed this at her last appointment. He said usually the kids decide they are done with PT before they actually ever "graduate" from it. He said she will always have the issues with walking,tripping, and a lack of balance. She is having a hard time getting over her last hospitalizations. I think we are at somewhere around 16 hospitalizations. I am starting to lose count. The geneticist also said she will pretty much always require being fed throughout the night. I was hoping that eventually that would be phased out but he said she will either always have a gtube or will have to wake up a couple times during the night to eat. I was disappointed cause I was hoping that as she got older she would eventually be able to go overnight without the gtube. It seems impossible for Sean and I to ever have a night without kids. Which brings to mind the fact that she will never really be able to have sleepovers at other friend's houses. Seems so minor for most but yet another thing she may not ever be able to do. She has decided that she doesn't want to drink her Portagen from a regular cup...milk and juice she will drink from a cup but she refuses to drink her Portagen from a cup so she still gets a sippy cup for that. I was hoping we could do away with all things baby but that seems to be a slow process. They are doing really good with potty training. They both will go all day with panties on.

I think Kadian has another UTI. She has been sick over the weekend. The last UTI she had was the size an adult woman and she acted the same way she has been acting since Saturday. Both times her fever came on suddenly. She never threw up either times or had pain in the typical spots but had a stomach ache both times with diarrhea. She also didn't know she had to go pee till it was running down her leg. So they did the test yesterday afternoon. Once the DRs office is open this morning I will be calling to check on her test results. If she doesn't have an infection I will be very surprised. If she does it means more testing that the Urologist will do. She said she may have some urine reflux which her last VCUG didn't indicate. So either they will repeat this test or surgrically go in there to look at. She is on 2 doses of Ditropan a day now. She is still having 2-4 accidents a day. I am hoping they actually do something that will truely help her completely. She is still no where near night trained. I think I am going to start waking her up to go potty before I go to bed. I already limit her drinks before bed.

Emily is just Emily right now. She is my comedian...always keeping us laughing. She is talking so good now. She really wants to go to school. Hopefully they will get picked for the lottery thing here. I am hoping they can be in the same class but that is still up in the air. The school they would go to doesn't have a special ed class for pre-k so I don't know if Lauren will go somewhere else which means all three would go somewhere else which because of the medicine Kadian is on(which doesn't allow her body to sweat)we don't want her to ride the non-air condition bus so that means I would most likely have to drive them to that school. I need to call the Board of Ed here to find out what to do about Lauren.

Well that is about it for now. We are waiting on Daddy to get back from sea. We plan on celebrating Thanksgiving with Sean's mom and dad. Hopefully everyone will be well b/c of Sean's mom. Happy Thanksgiving everyone.

1 comment:

Mike Davies said...

2 children with LCHAD, My wife and I thought having 1 was hard. Our hats are off to you and your husband!
We are raising our granddaughter and we understand the "little things". Our Hailey just started school and is already talking about sleep overs. We have explained to other parents about her condition and some of them must think that you can catch it like a cold or flu, some people can be short sighted!
Well good luck, we hope and pray that your little ones beat the odds.