Alex and Maddy

Alex and Maddy

Wednesday, May 25, 2011

From Missy

I have asked Ali to let me use her blog for a moment. I know that we share many "internet friends" and most people that followed my blog also follow her blog. I have closed down my blog and I figure this is the best way to let people know the reason!

Closing my blog was a very difficult decision because I feel like Samuel "lives" through his story and taking it down feels like I am taking away one of the few ways he actually "lives". But, Samuel's identity was stolen recently. We tried to file our income tax, but someone had "claimed" him as their dependent and received the $1,000 tax credit that was attached to him as a minor. It's a common scheme apparently, because a person that is deceased has no confidentiality rights and his birth and death certificates are both public domain. We learned that, along with the disclosure of his vital records, our information also became public, as Samuel's parents, our names, dates of birth, address, and more are now for anyone to access... along with Samuel's social security number.

I did a quick Google search of Samuel and, of course, found my blog, which also posts pictures of my beautiful little girl and very intimate details of our life. I know that I have been the one to make these details public, but I did my best to always keep our location private. But, with a public death record, our location is no longer mine to protect.

So I have made my blog private to protect my daughter (and the rest of our family) from the criminals that hold our son's identity.

I doubt that I ever go back to the blogging world. It was so therapeutic to me over the last 4 years, but at this point, I am trying to redirect the time I spent on the internet to time spent with my family... maybe clean the house better or cook dinner more often! My plan is to publish a personal copy of the blog or find a way to save it for my own records and then delete the entire thing from the internet.

The wellbeing of my little girl is more important than anything else, and the blog could possibly bring on more heartache to our family at this point.

I am so thankful to the blogging world. I have made friends with people that I have never met! There have been people all over the world that have prayed for the healing of our son and strength for our family as we grieve his death. Thank you for standing beside our family, for the prayers, the thoughts, and the support. I will miss my blog, for sure!

Monday, May 23, 2011

No News Is Good News

I haven't blogged because it has been pretty quiet around here. (Please stop and knock on some wood right now!) Things have been somewhat "normal" around here. We have just been doing school, therapy, psychology, etc! Alex has been great. His behavior has been fabulous and he has been breezing through school. He wants to finish this years curriculum so he is doing extra work each day to get through sooner.

We are gearing up to go away on our first vacation of the summer. We are going to the beach and can't wait! We will be with Grandpa, Aunt Jenn-Jenn, and Skye-Skye for the whole vacation and Mimi and Pop-Pop will join us for a few days. We are also hoping to see some friends! I am really hoping this vacation has a better ending then our last!

In medical news...Alex has done really well since starting the supplemental Potassium. There was some discussion of trying to stop it, but it was decided we would wait until after our beach trip and then see how he is doing then. I have had quite a bit of communication with Dr. P (immunologist) about IVIG (infusion to boost his immune system) and other measures to keep Alex healthy and out of the hospital. While we would have liked to give Alex IVIG before this trip we simply ran out of time. We do have a good protocol in place in case he gets sick while we are away. Dr. P. has actually spoken to the local hopsital and gave them a history on Alex and some treatment protocols. It allows us all to rest a little easier knowing something is in place in case of an emergency. Dr. P is also insistent that Alex wear a mask on the airplane which he is NOT happy about. We will continue the discussions about IVIG when we return home.

One last thing...Alex has been doing some testing with his Psychologist. He is doing an awesome job. I am so proud of him! He loves his Psychologist and has really built a strong, trusting relationship with her in a short amount of time. We are seeing the positive effects of this in all aspects of his life. We are so thankful to have found someone so loving and knowledgeable to help us with this aspect of Alex's care.

Please keep us in your prayers as we travel and try and give Alex some more fun experiences adn memories!

Sunday, May 8, 2011

Happy Mother's Day

Happy Mother's Day to all the incredible woman who are blessed to be called Mom. I am lucky in that I had a the smartest, strongest, most loving woman to guide me and teach me. Mom- you have taught me more then anyone in this world. You have been with through each stage of my life to encourage me and love me. I turn to you in my happiest moments and my darkest hours knowing and trusting that you will be there to share the laughter and the tears. I love you!
I was the first one up this morning. But once Buggy and Bruce woke up, I was ordered back into bed, bc I needed princess beauty sleep. I read for a while and my boys brought me breakfast in bed. Then I went for a run and got to play some board games with Bug and Bruce. Now we are just going to enjoy a quiet afternoon. The best kind!
A quick recap of the past few days and our trip to the ER....About 3 weeks ago we stopped giving Alex IV fluids each night as we have done for years.( Because we drain Alex's stomach 24 hours a day he loses a lot of fluids and we have replaced those with IV fluids. ) The reason for this change is to be able to de-access his port which allows him to live more normally and also lowers his risk of acquiring another line infection which is what made him critical in December. The doctors and I knew there were risks instopping the replacement, but the doctors felt like the benefits are great enough that we need to give it a shot. Over the past few weeks, we have watched his labs closely as they showed changes you would expect to see in someone becoming dehydrated. However, Alex was still acting and feeling ok so we marched on. On Wednesday, we realized his potassium was becoming too low and we were going to have to supplement. GI is working on a prescription that our pharmacist can make/Alex can tolerate. In the meantime, his Potassium continued to fall and Alex became lethargic and wasn't feeling well. On Friday morning, we ran labs that showed that his potassium was too low to wait any longer. The discussion ensued about whetehr to go to the local ER or trek to Houston for something relatively simple. Dr. K and I talked quite a bit about both options and ultimately Bruce and I decided it would be "easier" to just go where they know us and Alex is comfortable. (He gets really nervous in other hospitals that they will do something wrong or give him something he is allergic to). So Alex and I packed up quickly (Thanks to Theresa who has become our master packer) to get on the road. We arrived at the ER in Houston around 10:30 Friday night. Alex got his first Potassium runner overnight and we thought we would be on our way however the ensuing lab showed that his potassium had hardly come up. They talked to both Dr. K and Dr. Navarro (Alex's GI). It was decided they need to give a second runner with a higher dose and a bolus of fluids. That worked and we were on our way around noon yesterday! I spoke to Dr. K for quite a while yesterday about what is going on and the plan (which we really hope will work). Alex is feeling better once again. We will run labs again tomorrow and hope they are stable. Thank you to everyone who prayed for us and checked on us over the last few days.
Finally, I got some pics from our trip last month to San Antonio. Alex and his best buddy/Lauren had so much fun.