Fisher-Price-1-2-3-Lights-Sounds-Ball

The Fisher-Price-1-2-3-Lights-Sounds-Ball is one of Kai’s favorite toys! It plays music and has lights that go off when the base or ball is hit. It is very sensitive to touch. I use this toy while Kai is side lying and it really gets him working his arms to hit the ball. It is so hard to find toys that he is strong enough to set off. While using this toy he really works at hitting the ball and gets results. If he can’t reach the ball he can still set off the lights and music by hitting the base. I bought mine from Wal-Mart but I'm pretty sure you can find one just about anywhere.

Stories from the Heart

Stories from the Heart: A Mother's Day Tribute is a story that aired on Saturday April 30, 2011 for Mother's Day in Seattle by KOMO 4 TV. Kai, Ashton and I are featured at the end of this fundraiser program. The program is an hour long and includes some amazing stories of children and families at Seattle Children's Hospital and also some information on the research and community services offered through Children's. I was so honored to be a part of it and thankful to my Mom for nominating me. I received so many great comments from everyone on her submission too. I really appreciate everyone's support and words of encouragement. It helps me tackle another day and stay strong for my little boy!

The First Years 3-in-1 Kickin Coaster Seat

This kick chair is awesome! Kai loved it when he could use it. This toy has a seat with a foot board. When the baby kicks the food board the chair slides back and the board lights up and plays music. Up until Kai was about 18 months old, he had more strength in his legs than his arms and had no trunk or head control. So when we found this chair, I knew it would be perfect for him. It is very hard to work on leg strenth without trunk control. He used it all the way up until he was about 15 months old. The only problem I had in the beginning was getting the toy to light up and play music, as it wasn't sensitive enough. Kai just wasn't kicking very hard and couldn't set it off. I found a solution though. I tied a Fisher-Price Precious Planet Crib and Floor Piano to the front of the foot board. Then he would set it off all the time and would get so excited. 

Home Sweet Home

Kai was finally discharged from the hospital on June 7th. So far he is doing great. I really hope he is able to stay home for a while. He had quite the home coming. The fire department showed up to meet him and his nurses were waiting with presents. It was very sweet. We set up his room in the dining area. Easier access to him and he has a great view! You know you have a special needs child when their room is in the dining area.  I haven't been home in so long I forgot how nice it feels. One of Kai's nurses and I even took Kai out for a walk yesterday. It was really nice. I hope we are able to take him on walks often.  

On our way out of the hospital one of the friends I made there said "It is just crazy how you are leaving to go home just to put Kai on all of the same equipment that he is on here". I have been thinking about this recently. When Kai was younger, he would get sick and be admitted for a week or so and then go home when he was better. It is hard to deal with his progression now. We went to the hospital and he never got better. We just have to learn how to care for him now and basically run a hospital in our home. It's just a very different situation to deal with. It took me a long time to realize this and be comfortable with taking him home.

Medical supply storage system

Kai has a tracheostomy and is on a ventilator. He gets respiratory treatments every three hours using a cough assist, suctioning, nebulizers and puffs. He has oxygen needs and has a sand bed for spinal fractures. Needless to say, Kai has a lot of medical supplies! So I thought I would share the system I am using. It has been working great so far and is pretty inexpensive.

I bought two Trofast frames and storage boxes from Ikea. The frames I purchased are forty bucks each and the storage boxes range from three to five dollars each. Total cost for each of my shelving units was about $75.00 for the 12 unit frame and $60.00 for the 4 unit frame.They are great because you buy the storage boxes separately and they have many different sizes to choose from. You can customize it by using the size storage boxes you need. Then I label them for the nurses. It has worked great so far.

Foot Sensory Worm

Kai uses this worm toy to rest his feet on. It was a present from his aunt, and it works great. Kai loves to move his feet around on it, as you can see. It has a jelly like consistency that makes it really pliable for him to dig his feet into. I have heard other parents asking questions about feet sensory, and I think this kind of toy would work great for that. I have seen them in many different stores so they shouldn't be hard to find.

Adjustable Head Support

The Kiddopotamus Cradler Adjustable Head Support for Newborns to Toddlers has worked great for Kai in his car seat, stroller or chairs. It has Velcro straps in the back that you can adjust as your child grows. Kai has no head control, so it worked great for him to keep his head from falling to the side. A lot of the neck pillows that we tried would push his head forward. This one doesn’t because it is flat in the back. It is also washable, which I always love. I bought mine from Sears.