Summer break is going along well. Lota is busy with speech therapy, physical therapy and doctor appointments. Vision therapy is officially starting next week. We will be making the drive down to Salt Lake for that. Speech and physical therapy are both about 10 minutes away from our home. So vision is going to be a little bit of a drive but at least it's gonna be every other week.
Well, a lot has happened since I last wrote.
JUNE MRI RESULTS:With last month's MRI, our neurosurgeon did not see any new growth the day of our follow up but a week later he called and told us that the radiologist did notice a little bit of growth in the tumor. He said it is only about a millimeter so we shouldn't be too alarm. I love Lota's neurosurgeon but I have to be honest, I'm a little bit worried. I mean I'm his Mom. This is my baby and I have to admit I worry about him and his future and what this tumor is going to do to him. I know his Dad is too. There is also 2 cyst on the tumor Lota's medical team is watching very closely.
With those in mind, we all agreed the port needs to stay just in case Lota needs it. So we have to take Lota in to get his port access or flush every 4 weeks to keep it clean. We did that this past week and Lota is starting to get the hang of it. I love how sweet he is to the nurses.
FUN WITH MASCOTS:
Last weekend I took Lota to play dodgeball with the mascots of the Mascot Miracles Foundation. You know, when you have 5 other babies that need you just as much as your sick child does you start to make sure you enjoy every moment spent with each of them. It was so nice to have some one on one time with my Lota. Just him and me. In this picture, we were trying to come up with a game plan, like which mascot to get first.
Thank you to my friend Kimberly Colbert for capturing this priceless moment.
RUNNING RAGNAR; RUNNING FOR A PRINCESS:
And the highlight of June was - Lota survived his first Ragnar experience. He had the best time of his life. He ran Leg 7 (4.7 miles) with our dear friend Julie, Leg 19 (3.6miles) and Leg 20 (2.9miles) with his Dad in the middle of the night and then Leg 32 (4.1 miles) with me (his Mom). He ran that brutal 4 mile down hill in memory of a Princess. Her name is Millie Flamm. She passed away from cancer and her story touched our hearts. Lota had a great time and as his parents we are so proud of him. We are so amazed at how compassionate he is towards others at such a young age.
So with some good advice from our Poppah, we have decided that the best way for the children to give back is through service. The kids are excited to find little ways to serve others. We will also focus on 9 kid friendly service project between now and Lota's 9th birthday.
SEEING DOUBLE:
Well, with the surgery and all the changes that Lota's little brain and eyes are going through, Lota had to go get his eyes checked again since he was seeing double with his glasses. He got them at end of March. The poor kids needs new lenses. So we should be getting them this week. Lota is excited to be able to see clearly again.
Thank you for supporting Lota and sharing his story. We hope his fighting spirit continues to inspire many of you to continue on with whatever journey you are pursuing in life. God bless and have a wonderful week.
Thank you.
Life is all about experiencing the joy of living. Lota did just that at Ragnar. I was in Van 1, he was in Van 2 with his Dad. Every time we met up, he would give me a big hug and say with so much excitement in his eyes "Mom, I'm having so much fun." The quote that kept coming into my mind was this "Life is to be enjoyed not just endured". We can't dwell on our trials and our problems. We must make time to play and enjoy the ride too. Life is too short to not have some good fun with those we love while we're here.
#TEAMLOTAGIVESBACK:
Lota is also working on a cool little challenge with his siblings. Lota will be 9 years old this October and after several family discussion about giving back, he wanted to raise money for his favorite charities. We were all excited about this and wanted to make it happen. But after more family discussion we concluded this approach does not work for our family's situation right now.So with some good advice from our Poppah, we have decided that the best way for the children to give back is through service. The kids are excited to find little ways to serve others. We will also focus on 9 kid friendly service project between now and Lota's 9th birthday.
SEEING DOUBLE:
Well, with the surgery and all the changes that Lota's little brain and eyes are going through, Lota had to go get his eyes checked again since he was seeing double with his glasses. He got them at end of March. The poor kids needs new lenses. So we should be getting them this week. Lota is excited to be able to see clearly again.
Thank you for supporting Lota and sharing his story. We hope his fighting spirit continues to inspire many of you to continue on with whatever journey you are pursuing in life. God bless and have a wonderful week.
Thank you.
