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Nurse Tanekqua worked last night so I took the kids to the grocery store even though I was exhausted. Jer went to sleep around 10:20 and she said he needed suctioning quite often. Once Nurse T left around 6am, Jer was restless and got up filled with secretions.

I’m thankful we have the knowledge and equipment to keep his lungs and airway as clear as possible. Today Ny’Asia came to help me take him to his heart doctor also called a cardiologist. Dr. Steflik is amazing and always educates me while testing Jer. We go to the heart doctor because the heart is a muscle and TK2D affects all muscles. But…the good news is his heart function is perfect so we only have to return for checkups every six months. Jer was fussy at his appointment but better once home. He enjoyed the crunch of a teething cracker we tried and then we worked on standing time using the couch. It’s amazing how he was fearless with trust and slid off the couch onto his feet!
It stormed earlier so we didn’t get to go live to open packages. Many had no names on it but thank you so much and also to Aunt Janet Flowers, Donnetta Rigney, Twanna Askew we appreciate the gifts. The wedge will help correct his pelvic tilt as we still work on his hips, clothes because he is growing fast (today he weighed in at 34 pounds), detergent as I wash clothes daily, some lotion and soap for him, navy blue sheets, some bedtime pillow spray, an animal book, fruits, an inflatable bath tub as he is outgrowing his, and a social emotional mirror as we are working on that. Each item always has purpose no matter when we use it. We ended the day playing Connect 4 and Jer and I are the champions. Yes we are competitive with family games around here and I think Jer is catching on. We try to include him in all games and it helps him in more ways than one. I hope his secretions are better tonight as I’m low on energy. His increased loss of fluids also has his heart rate a little higher so I’m giving extra fluids to help him. We have some exciting news coming out soon that we can’t wait to share! And honestly it was made possible because of you….

Today we pray that you release your fear and use your faith to simply trust God. May we keep our hearts pure always being a light to others and always including them in God’s love. May we live with purpose and may it align to the Father’s plans for our life. May we never forget that God is good yesterday, today, tomorrow and forevermore.

💚🙏Happy Tuesday💚🙏

Posted June 28th 2022 at 9:05pm

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