Donations

Hi Logan,

Mommy packed up all of your medical supplies yesterday, and donated them to a bunch of other babies who needed them. I think the supplies include: a box of 3 ml syringes, a bag of 1 ml syringes, some big 30 ml and 60 ml syringes that we used when feeding you through the ng tube, 4-5 ng tubes, 6 Mead-Johnson Cleft Palate nursers, a stack of Tegaderm, and other little knick knacks. I finally went through all the stuff and gave them all away. We really have no use for them, and if some other kids can use them, that's great.

I met up with a mommy (kind of like a blind date) who is part of a feeding support group. I gave her everything, so that she could share with other mothers. I met with her 5-yr old son. Her son also has a suspected Mitochondrial disease, but they couldn't test which one specifically. He's been seen by this expert, Dr. Enns at Lucile Packard. I think the boy is in good hands. Dr. Enns is famous in the Genetics field, and I once wanted to get you transferred to Lucile Packard because of him. This little boy is developmentally delayed, has speech impairment, feeding issues, and ADHD. He is definitely a handful, but he's also so adorable. This mom also has another 11-month old son. It must be very difficult to take care of two young children.

We shared some stories and instantly felt a connection because of you little boys. It's amazing how strangers could meet up and started pouring their hearts out because of this special bond. I don't have much to offer, but to encourage and reassure her that everything would be fine. I told her that I work at The Arc, and that when her little boy grows up, he will be ok. There are many great agencies out there that will assist her son to be independent and self-sufficient. I am sure once you have a child with special needs, you start worrying about him for the rest of your life.

Am I lucky to not have to worry about you? Have you sacrificed yourself knowing our lives would never be the same because of your special needs? I told the mother how I wished your diagnosis was Down Syndrome, or Cerebal Palsy, or Autism, because at least, you would very likely still be here. However, you have Leigh's Syndrome. At least I know you're in a better place. I am confident that you are enjoying your days playing with little angels, so much better than a life with tubes and needles.

And you know what, Ah Gung and Ah Po sent you 10 more pinwheels in the mail. Some of them are very funny/interesting looking. I will definitely bring them to you next time.


Love you,
Mommy