Miss Lydia Rose: November 2017

Wednesday, November 15, 2017

Run for LITTLE Hearts 2018

Dan and I have chosen not to participate in the 5th Annual Run for LITTLE hearts 5k. We have an annual summer event that is the same weekend this year.

We have registered for the race to support the cause and get the awesome t-shirts, but we will not be at the race. Team Love4Lydia is created and fundraising. If you are interested in going to Run for LITTLE Hearts or supporting this wonderful fundraiser for CHD babies, families and research in the KC metro, you can do so via Team Love4Lydia.

We have had such tremendous support the last two years, in 2016 we won the largest team award and in 2017 we raised the most money! We appreciate you all and hope to be able to race again in 2019.

http://runforlittlehearts.com/

https://www.facebook.com/runforlittlehearts/

https://www.crowdrise.com/o/en/campaign/teamlove4lydia

Tuesday, November 14, 2017

Busy week for Lydia

Last week was a busy week for Lydia! We had several appointments and check-in meetings with "her people."

Cindy from Parents as Teachers with the BVSD came to the house on Monday. She and Lydia talked about feelings. We are going to make feeling cards, learn feelings in sign, and start talking about expression more.

Carrie and Dana from Infant Toddler Services came to the house on Tuesday. Lydia's height and weight are holding steady. We've been adjusting her diet and therefore her calories, so no weight gain was expected. For awhile we switched from 2% milk to Ripple milk, it's a pea plant based milk. This was to hopefully to prevent Lydia vomiting so much. We started a medicine for the same thing around the same time, so I put her back on 2% to see if the meds were doing the trick and they are.

Lydia had Speech Therapy at CTS with Ann on Thursday. She loves it there! We pull in the parking lot and she gets all excited. Once we are in the building she makes a bee-line for the door and goes straight for the sensory table. Ann comes to the waiting room to get Lydia and Lydia takes her hand and turns to wave goodbye to me. Excuse me, I get to go too!

We visited the General Surgery Clinic on Thursday to check a sore spot around her gtube site. They put some silver nitrate on it and we are good as new. Also, the nurse said that when we remove the gtube (who knows when, it will be awhile!), they can remove some of the tissue that has grown around the site and clean it up.

And finally, we met Lydia's new, normal, typical pediatrician, Dr. Davis. This is the first doctor we have ever see outside of CMH walls. Not to worry, the office is an affiliate and Dr. Davis has access to Lydia's medical records. She was completely prepared and it totally impressed me how much she knew about Lydia. Dr. Davis is on the board at CMH, is very well established in the metro, and has seen kiddos with everything Lydia has and is dealing with. She was wonderful with Lydia and I really enjoyed her. Win!