Kai did well at chemo Wednesday. His counts were all good and his weight was up a little. Not as much as I would like but its a start! Since we were gone for a few weeks it seemed like EVERYONE wanted to meet with us. Of course we saw Christine (Kai’s Nurse Practitioner that we see every week) and as always she spent plenty of time with us, checking Kai out and making sure I was comfortable with how things are going. We are so thankful to have her!
We also had a long meeting with nutrition and talked more about the blenderized diet. I feel like they are all coming around to the idea and as long as I work to keep his weight up and keep his diet balanced everyone seem to be in support of it. The nutritionist seems pretty interested in learning more about it as well which I am excited about. Hopefully this is something they can eventually be talking about with other families whose children are not doing well on formula tube feeds. I feel more comfortable doing this with their guidance and I am happy to have their support. Now we are just waiting to hear back about a grant for the blender and we will be in full blenderizing business!
Kai’s social worker Michelle also stopped by to get our permission to use a picture and a quote from a thank you letter I wrote to Bridgit Brigade Foundation. We connected with them early on, with the help of Michelle, and they have helped us SO much.
December 10 they are hosting the Second Annual Bridget Brigade Bash to raise funds for the foundation. They are also currently organizing a toy drive. I’m not sure which event they will be using our information for. Visit their website to find out more:
Since we have been home Kai has been tired as usual. He did get sick yesterday during his early intervention with Erin (sorry Erin!) He recovered quickly and actually ate pretty well the rest of the day. He is still waking a few times a night again from his cold/chemo but its nothing like how it used to be. We are hoping to get in to see Jacqueline for some acupuncture in the next few days. Hopefully he will be feeling a little better after that.
Yesterday morning I must have gotten 10 phone calls, for Kai, before 11 am!
One call was from Leiza at Lucy’s Love Bus. They are a grant foundation that supports integrative therapies for pediatric chemo patients. It is an amazing foundation and I am so grateful they are able to help Kai continue with his acupuncture therapy! Leiza also talked to me a lot about nutrition, breastfeeding, massage and other therapies that may be good for Kai in the future. What a great resource and support! Thanks Lucy’s Love Bus!
Please pass on their information on to anyone with a pediatric chemo patient or anyone willing and able to donate to their fund.
In addition to these foundations, we have had so much support from so many individual people along the way. We want to thank all of you who have been so generous, who have been constantly praying for us and thinking of us, who check this blog every day to see how Kai is doing. THANK YOU! We can never thank you enough! I can not explain how much it means to us. I can only hope that one day we are able to pay it forward and help others in the way that all of you have helped us. I so look forward to that day!