And just like that, Mavericks 3!

Well, he turned 3 almost a month ago but life has been busy and I’ve been bad about blogging. We had fun celebrating and Maverick seemed to enjoy the attention!

Slow and Steady

Maverick is on the slow and steady path to recovery. We had a follow up visit 2 weeks ago, one spot of his incision wasn't getting the best blood supply so stitches had to stay in for a while longer. Josh took Maverick on Thursday for another follow up. They removed the stitches but gave us another 3 months of restrictions, the big one that we still can't pick Maverick up from underneath his arms.  He's in good spirits though and back to crawling/playing as usual!  Below you can see his incision area, we obviously still have some healing left to do!

Cleared!

Maverick has had a pretty uneventful recovery in the hospital. Neurosurgery cleared him yesterday but we've been working through some urology issues (most likely a result of messing with the spinal cord) and got their clearance this morning. Maverick and mom were home in time for lunch with the brothers and Grammy.  Now we get to have a low key week and go for a follow up appointment next Thursday. 

Recovery Road

Surgery time was 7:30 am yesterday which meant an early start to our day.

 Arrival at 6:15 to do all things pre-op, including a sweet batman drawing to mark near the incision site. 

 

Took about 4 hours from the time I kissed him in the OR to him being in the Recovery area. 2 hours there and then we were ready for our room for the remainder of our stay. He's been on flat bed rest since which has meant no holding of this sweet boy.  Pain meds, IV fluids and antibiotics have been constant but we are working on eating and drinking. Also today he has had more energy and is interested in playing. 

We continue to monitor incision site healing and work towards increasing movement this afternoon. 

We're here!

So it's been a while since the last post, sorry about that. Life with 3 kids, loads of appointments, work travel and summer fun means that I'm too tired to do much besides work, family time and sleep. I'll work on some catch-up posts. 

In the meantime, big update is Maverick will be having a tethered cord release tomorrow. We expect a min of 4 nights at the hospital and need to closely watch the incision for infection and/or swelling. I'll do my best to post some updates throughout the week. All prayers and good thoughts are appreciated for a uneventful surgery and recovery!!

Cruising

Maverick has become quite the master of his Zipzac chair and it's fun to see him enjoying his freedom with it.  This video was probably taken about a month ago but gives you a good idea of his ability to maneuver it.  Other news from a mobility perspective - he has figured out how to army crawl and while not speedy, can get himself from one room to another just fine!

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. 

 

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 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!

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. 

 

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!!

Sneak a peek Pictures!

Love these pictures that represent what Maverick and I went through in Feb 2015 

 

 

 

Foot Attire

Here is Mavericks new AFO!  He got this back in February and will get a left one this week so that he can begin to work on weight bearing exercises.