Saturday, April 26, 2014

Next Steps

On April 7 we were able to purchase a piece of equipment called the Upsee.  For those of you who do not know what that is you can find a video here.  All special needs equipment is very expensive.  I never dreamed we would order something like this that carries a price tag of $500.  After an aunt sent us a link on Facebook saying we should check it out, a cousin decided to make it possible by starting a fundraising page to help pay for it.  The amount we needed was raised in less than 24 hours and plenty more.  Jason and I were completely humbled by the love and generosity that was show by our family, friends, and even strangers.  We decided to start a separate account for Kahsay.  We will use the extra money we received to pay for upcoming therapy, equipment, or medical supplies that are not covered by insurance.

The Upsee will provide Kahsay the opportunity to stand up and experience the world with his hands.  Right now Kahsay is unable to stand unassisted without using his arms for support.  This makes it hard for him to use his hands and arms to explore.  I am so excited to take him to the Children's Museum and see if he will play in the sand table.  I can't wait for him to stand and touch his sister's faces.  It will be amazing to watch him use his legs to walk around like a normal developing child.  While we have faith that Kahsay will someday walk, we do not know how or when.

So....I now want to thank all of you who made this possible.  Thank you for loving my son and wanting him to experience life like other children.  We will not receive the Upsee until June 2 but I promise when you see the smile on his face when he uses it for the first time, it will be all you need to see to know your donation has made a huge difference in a little boys life.

For those of you who are always telling me Kahsay continues to be in your family prayers I am asking you to continue to pray.  Here are a few specifics:
1.  Pray for weight gain.  While he finally made it up to 19 lbs a few weeks ago, he got sick and is not down to 18 lbs 2 oz.  Again we work hard to slowly gain.  We are switching to a new feeding tube that will lock into place so we can be more successful with a continuous drip all night
2.  Please continue to pray for his mood.  When we are home he is happy and content.  It still can be frustrating to take him in public as he gets easily irritated and hard to handle.  The girls take the brunt of this as we often have to leave events early or not go.
3.  Please also pray as we will be attending feeding therapy again this summer.  We are hoping Kahsay will learn to handle some purees.  There are so many sensory issues along with his diagnosis of dysphagia that get in the way of successful eating for him.  Pray also for me to be disciplined with the home plan and for summer childcare for the girls to fall into place.
Thank you for your continued prayers.  We appreciate them more than you will ever know.