CaringBridge Site for Alex

I have decided to create a site for Alex on CaringBridge. I will continue to update this blog about our life etc. but most of Alex's medical updates will be on the Caring Bridge site.

You can access it by going to Caringbridge.org and entering his name with no spaces "alexhoward"

Or here is the site:

http://caringbridge.org/visit/alexhoward

Holly

Charleston Dr. Update

We spent the weekend in Charleston, SC and it was so nice. Perfect weather and Alex did great the whole time including the drive. Saturday we got in, in the afternoon and after checking into the hotel we went to the beach for an hour. Alex didn't quite know what to make of the water but it was fun. Saturday we drove out to Magnolia Plantation and walked the gardens. It was beautiful. Then we went into Charleston and walked around the market and my parents favorite candy store that has the best pralines in the world!! We drove down to the Battery area and walked around the park and up and down differnt streets. Just relaxing to walk around without a set adgenda or time-frame. That night we ate at Water's Edge. It was VERY good, I highly recommend the salmon! Monday, fun time over, we packed up checked out, got breakfast and headed to the hospital. My mind was racing and my stomach was in knots, I don't know why I am so at peace with things until I actually go to the Dr.....maybe it's just denial that anything is wrong until I am facing it head on. UGH!!! Anyway, I did like this Dr. and he said that he was sure that it was Cystic Hygroma (which we already knew) and he gave the run-down of possible options: surgery or sclerotherpy (ie chemo). He said that before we make any decisions they want to do an MRI. All we know is what we can see on his neck/back....we don't know what or how extensive it could be, where we can see (it could be in his chest and we just can't see it). So the MRI will tell them everything they need to know. We are set up to go the last week of May and he will be put to sleep for the MRI since you have to be still, and there is no way to keep a 6mo old still!!! After the MRI we will meet with another Dr. that will evaluate him and let us know what sclerotherapy options may be best for him. The Dr. said that they would like to try that first instead of surgery if possible. I think that there are just more risks with surgery in the neck area where so many nerves are located. So we are back in the wait period. I think I am ok, but haven't really processed everything yet. We have not ruled out staying with our Dr. in Greenville. We just don't know and have not really had the time to process. Prayer, that is what we need....that and for time to just stand still long enough for me to breathe and appreciate my kids while they are kids. Time is just gone before I know it....with my work and the Dr. appts it seems like my life is just one schedule after another!! I will upload some photos from Charleston very soon, if you are my friend on Face Book I have already uploaded some there.

Special thanks to my Mom and Dad who helped with Ella while we were gone, they have been so amazing any time we have needed them, they are there no questions asked...I hope Stephen and I are as good to our children as they have been to us!

Another special thanks to all of you who I know check this blog and some that I don't...Thanks for your prayers, they are felt and so needed. If you check in on this blog every now and then and would like to, leave a comment, you don't have to really say anything just let me know you stopped by so I can say a prayer of thanks specifically for you!

Holly

Alex Dr. Appointment Update

It has been nice to be home for a a change. We are all doing well but we had to take Alex to and ENT (Ear Nose Throat) Dr. because he keeps getting ear infections. The Dr. said he needed to get tubes in his ears. The will call me next week to let me know when. The Dr. asked about the mass on his neck and he highly suggested that we see a Dr. with MUSC (Medical Univ of SC) in Charleston. There is a Dr. there that specializes in neck masses and has seen other CH patients. We have an appointment on April 20th. I like the Dr. we are seeing now but it can never hurt to get another opinion, especially one that deals with this more often. I just want it to go away, I don't want my son to have to deal with this. I pray that whatever treatment we choose will be the best for him. There is no cure for CH and only a few options for treatments, sometimes they are successful sometimes not.....we will just have to pray and wait. Ella has been so sweet and she is such a sweet little girl that loves her baby brother. After I took Alex to the ENT, Ella rubbed his little cheek and said "You did so good at the Dr. Alex, I am so proud of you." Oh, those moments are just the most precious. Ella is almost finished with her first year of school 4K. It's gone by so fast, she has enjoyed it and has done really well. Alex has achieved a milestone, he has started to roll over. He's rolling like crazy now that he has the hang of it and it won't be long before he starts scooting around. I wish I could slow time down.....these days are going too fast!