Many Milestones

With cases of the Flu being confirmed it has for sure made us more cautious of having an visitors over. Even when Nevaeh has nurses, physical or occupational therapy over they all wear mask. Nevaeh’s birthday was awesome, she seemed to enjoy herself and fell right asleep after all the fun. To the wonderful person who donated the piñata to her, thank you so much it was amazing and very beautiful, we all had fun with it. Nevaeh has been surpassing some milestones this month! She is now able to stay on her hands and knees, and hold it for 4 minutes! She can also stand holding onto something, and roll over in both directions. Nevaeh also has 5 teeth now, and likes to bite my shoulder when I hold her. She was not able to do things I stated above whenever we got home. Nevaeh has not been able to eat by mouth sense she was admitted. When she went into heart failure she wouldn’t stop throwing up because there wasn’t enough blood flow going to her gut. So thats when she first got her NG (feeding tube through her nose), After her heart transplant was when she got her g-tube and trach. Sense she was intubated (with a  breathing tube) for 6 weeks and got finally got her trach she didn’t want anything to do with putting food or even let alone her own thumb which she likes before. She is doing really well with eating so far and is up to 2 oz of baby food 3 times a day. We do have some upcoming appoints for Nevaeh. Next week she will be going to an adult nursing home 2 hours away to see if she qualifies for medical benefits. Then the following week she will have a 3 day stay at OCH (Our Children’s House) to try and wean her off of the vent! We couldn’t be more excited for this amazing step ahead for Nevaeh. It for sure will be a long 3 days not being at home, but it sure doesn’t compare to 6 months. Our worry while she is staying there is germs, we are praying that if any of the nursing that get in contact with her are in amazing health. For these next coming up weeks Nevaeh could use all the prayers that she can to come off the vent because it will be a huge step! We are also praying for the next event that is coming up in honor of Nevaeh that we will be able to meet her goal of $25,000. Her Heart Dash 5K and fun run will be on November 17, 2018, for more information you can can go to this link —>  tinyurl.com/TeamNevaeh5K . Thank you always for the continued thoughts and prayers for Nevaeh and our whole family. 

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