Just Checking In

All is well in our home. Been busy doing this and that which hasn't left much time for this space. I am okay with that though as there is a season for everything. Right now, I need to spend some time doing other things.

Here is the low down on everything in our home:

I am doing fabulous with my healthier eating. I have held true to my word that I would not weigh myself for 3 full weeks. It darn near killed me this week because I was doing so well, but I also knew that if the scale did not show the number of lbs that I felt like I had lost that I would have been more prone to giving up. I just keep telling myself to trust in the process, and it will not fail me. I started to meet with Bob again (Bob Harper that is - my exercise guru) and I have found myself both love and loathing him. I love him when I am done working out, but loath him all the while I am sweating like a pig asking my body to do things it hasn't done in years. Once again, I keep telling myself to trust in the process - eat well and exercise my body and it will not fail me in losing this excess weight. I think that 6-8 lbs in 3 weeks is completely realistic. Time will tell...

The boys are doing well. Enjoying their summer immensely. They are having a good time watching the World Cup and hanging out with their friends. 

The girls, too, are enjoying their summer albeit with a bit less freedom than the boys - although that is to be expected as they are younger than their older brothers. 

Miss Sarah is holding steady. Her eyes have not made any major improvements, and I worry that she has been on a bit of decline the last few days. She has told me that she is comfortable with where her vision is, so I am trusting her to know herself well enough to know when she needs to seek help. We have successfully made it a full month without any eye emergencies, and I am very grateful for that. I am hoping to make it the whole month of July without being admitted into the hospital. It would be the first month since last December when she has not had to be hospitalized/used the infusion center at least once during the month. 

We have an appointment with at the Neurological Institute in Buffalo on July, 25. (This is one of the Pediatric MS Centers of Excellence.) We are going to be seeing a neurologist who specializes in pediatric autoimmune diseases, specifically MS.. We are hoping to get some type of confirmation as to which disease Sarah has and also to see what can be done to help stop the deterioration of Sarah's vision. (She is currently still taking 5mg of steroids every other day, and I truly believe that this is what is keeping her vision loss at bay. She cannot continue to be on steroids forever, so we are looking for an answer as to why she keeps relapsing what we can do to prevent it.)  Sarah also submitted a saliva sample for genetic testing to see if she carries a specific gene for a disease called Leber's hereditary optic neuropathy (LOHN). We should get the results back in a couple of months. 

I am planning on taking the kids to NY this weekend to visit with my family and to take some pretty cool day trips. I am planning on taking them in NYC for the day since our overnight trip got cancelled with Sarah's May hospitalization. We will be staying in NY just shy of 1 week. 

Hope you are having a wonderful summer!