Sunshine State

We decided to take a little family vacation to Florida for a long weekend in November. The plane ride down there was uneventful and all the boys were well behaved. They even got to sit in the cockpit at the end.

 

 

We spent a couple days with just us in the Ft Myers and Marco Island area. Enjoyed lots of swimming and playing on the beach. 

 

 

 

My parents joined us 1/2 way through so that was fun to spend time with them too!!  They watched Maverick so we could take the older boys on an airboat ride in the Everglades. 

 

 

  

Josh and I had a nice dinner out too!

 

It was a wonderful time away with the kids!

Cast Take #2

On Sunday evening when I returned from a work trip, I noticed that Mavericks foot had slipped back about 1/2" or so in his cast. 2 main concerns with that: foot position itself and no longer getting the stretch we wanted for the tendon; and pressure sores on his foot on the areas rubbing against the cast. Put a message out to the dr, they called back on Monday morning instructing us to go to UW clinic right away to evaluate it. They cut the cast off and were pleased with the progress so far (way better range of motion). Since the cast was off, they sent us across town to get fitted for a new AFO. Once that was done, we had to go back to the UW clinic to get a new cast put on until next week. Baby boy was a trooper throughout most of our day (~7.5 hours), considering poor nap and not very many bottles. Silver lining in all this is that hopefully his new AFO will be ready when his cast comes off and with the new cast, they were able to get stretched a little bit more.  

Bad news is that he doesn't fit into the Zipzac chair very well. 

 

Thankful

There is so much to be thankful this year:

•  my husband who has endless patience in his stay-at-home days, his willingness to cook and clean and his humor he brings to all situations 
• Jaxon who is independent, a generally good helper, fantastic big brother, and sweetest boy who wears his emotions on the outside 
• Jaeger who is strong minded, persistent, inquisitive, and lover of all things cars and transportation. 
• Maverick who is the biggest fighter showing strength and optimism in all that he has to endure, his newly-found appetite for all things food, and his quirky dislikes including stuffed animals and collared shirts 
• My family who is always there for us and such fun to spend time with 
• And all the friends present in our lives

And to end this, a picture to show joy amongst the mess!

 

Candy for days

I realized that I never posted about Halloween. The boys had a great time, trick or treating at my work and also in the neighborhood. They all got way too much candy but they had a blast in the process!

Jaxon as Kylo Ren (his latest obsession is Star Wars):

 

Jaeger as a ninja turtle (the purple one!):

 

And Maverick as Yoda (he tolerated the hat way better than I thought):

 

And all together:

 

 

Little blue cast

Surgery on Wednesday went well and only took 20 minutes to do the procedure and cast. He's tolerated the cast so far, although he tries to pull it off like a sock. Luckily he can still fit in his Zipzac chair so he's been wheeling through the house like normal!  Cast will come off the week before Christmas and then he'll need a new AFO that provides greater support to him in a weight-baring position. 

 

 

 

 

Surgery #4

We've got the next surgery scheduled for Maverick coming up on Wednesday. He's always had a very tight right foot and his ortho dr has decided that it's time to do a heel-cord release to let that foot get into a weight-baring position more easily. Good news is that his limited feeling down there will let us do this in clinic as opposed to the hospital. He will have a full leg cast for 6 weeks and I've got my fingers crossed that he will still be able to fit in his Zipzac chair!

New sleeping arrangements

A few years ago, we bought bunk beds with a full bed on the bottom with the hope that the 2 older boys would share a room. Fast forward to now and Jaeger pretty much considered his parents room as his own. Turns out Jaxon is not the nicest co-sleeper as his knees end up in your back and neither was interested in the top bunk!  Bunk beds removed and each now have their own bed within their room.  

 

 

 

New set of wheels

At the beginning of this month, Maverick got a new set of wheels - a Zipzac chair!

It's taken him a little bit to figure out how to use both hands and turn but he's got it down now. Poor Izzy has had her tail run over a few times:(

Here's a couple videos that show the progression he made. 

He figured out his right hand first.

And now he is cruising through the whole house!

October is Awareness month

October is Spina Bifida awareness month and one of the moms from an online group of fetal surgery families posted this which I thought was quite informative  

Hungry hungry hippo!

It was a short 2 months ago that Maverick spent almost a week in the hospital for refusing to eat. And he's been making huge strides forward ever since we got discharged home. His newest food that he has discovered and loved is mashed potatoes and gravy.   This kid will be ready for a full thanksgiving dinner!!  

Brothers!

 

Busy busy bees!

Life is definitely busy in our house, mostly with 1-3 appointments a week for Maverick but the other boys have their share too!  Here's a glimpse into some of our weeks:

Week of July 18

• Maverick appt for his left AFO 
• Jaeger pre-surgery check up
• Jaxon and Jaeger swimming lessons 
• Maverick physical therapy (PT) appt  (takes 2 hours of my day)

Week of July 25

• Maverick PT appt
• Maverick Birth to 3 appt (in home therapy)

Week of Aug 1

• Grievances Meeting for Insurance coverage of a zipzac chair for Maverick 
• Maverick PT appt
• Maverick feeding therapy appt
• Jaeger dental surgery (his 2nd front tooth had to be pulled)

Week of Aug 8

• Maverick Birth to 3 appt 

School starts on Thursday for the older boys and I think all parties are ready!  I'm hoping that Josh will be able to take Maverick to some of his appts during the short 3 hour window where Jaeger is at 4K which would allow me to get work done during the normal day!

Still on the go!

Just thought that I would share a video of Maverick using the car!

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!!