Go Baby Go!

The UW has a program called Go Baby Go that brings together PT and Engineering students to modify motorized cars to fit kids with special needs.  Maverick was selected to receive one of these cars during the latest build day. They did such an amazing job of adding in support where he needs it and looking to the future as his needs change. He got a little overwhelmed during the build process and wasn't too keen on trying it out there but once we brought it home, he quickly figured it out and couldn't stop grinning. 

 

Staycation!

I had a free night at a Marriott hotel to use up by end of July so I decided to book a night at one here in town and have a little staycation with the older boys!  It was really nice to be close to home yet give the boys some out of the norm time. We did quite a bit of swimming as their pool had a nice shallow end for Jaeger and Jaxon could swim all over. 

 

 

 

 

 

As bedtime came, the boys got sad and missed Daddy so we packed up and headed home for sleep in our own beds 😀

Fishies

Jaxon just loves to swim and he has made such progress in the last few months. This last round Jaeger has also started taking lessons but he's not quite as adventurous as his older brother. 

Happy Fourth!

Happy Fourth of July from the Hughes boys!! 

And then not too much later, Maverick got pretty proud of himself....

 

And in an unrelated note, I think I broke my toe yesterday. I blame it on the super messy basement that i was in the process of cleaning up.  I almost cried and Jaeger laughed, think I can count on him when someone needs a nurse??

Home=Happy baby

Maverick was discharged yesterday afternoon and immediately you could tell he was instantly happier. He's even eating from a bottle, although it has to be given by Josh. I don't think he has moved past mommy as the source of food and comfort nursing. We have a few follow up appointments next week to evaluate blood work and weight progress. I remain optimistic that we are headed in the right direction and the ng tube will be a short term thing. 

Me: Maverick, you ready to go home?

Maverick: (big grin pictured below)

 

Some pics from the last day at home:

 

 

 

Mommy Guilt

I generally try to stay positive throughout all our journeys but sometimes you just need to cry a little. Today was one of those days. I quit nursing a few weeks ago even though Maverick still very much was interested. If I hadn't, would he be at home, sleeping down the hall from me?  I know Maverick isn't critically ill but it still just breaks my heart to see him without his spunk.  

We are on night 4 at the hospital- he's gotten plenty of fluids, iron through the IV, a bowel clean out (not a pleasant few hours 😞), feedings via ng tube. And he still doesn't seem too interested in drinking from a bottle. Josh has gotten him to take a few ounces but not enough to remove the ng tube. I think he'll be discharged tomorrow which is good but we still need to find a way to get him to eat and drink on his own.  Otherwise we are talking about surgery to put in a g tube. We've cancelled our trip to Iowa and will lay low this holiday weekend.   I think I know someone who will snuggle with me❤️....

Bottle Strike

Over the weekend, Maverick decided to refuse drinking a bottle. We managed to get almost 15 ounces in him throughout the day on Sat but just 3 ounces on Sunday morning had me quite worried by evening. I brought him in to the ER for dehydration, knowing they'd be able to get some fluids in him. He puzzled the Drs some as he had no fever and his lab work didn't indicate any infection. They decided to admit him to make sure we get him well hydrated, his iron levels up and back on the eating path.  We spent the day snuggling and napping and did see some perk come back.      

Josh is staying with little boy tonight while I get some rest in a real bed.  I'm not sure when we'll get discharged as it very much depends on Maverick drinking from a bottle.  Fingers crossed for a good night!!