Update on Maverick

I haven't posted an update on Maverick in a while which is a result of 2 main things: no real news and lack of time on my side. He had his last clinic day back in September and his next one is in January. We did have an appt with neurosurgery in November with another quick brain MRI to monitor his ventricles. They remain on the larger side of normal but don't warrant any intervention at this point. He also had a sedated CMG right before Christmas to see how his bladder is doing in terms of volume and pressure. We won't get the results until next week sometime but the medicine he's taking appears to be helping as the volume was significantly higher than in June.

Our main focus right now is on developing some core strength to help Maverick sit up unassisted, roll over and eventually get up on all fours. We have an Occupational therapist come to our house 2X a month to review and provide us with good exercises to incorporate into every day routines. I can see progress already!

Merry Christmas!

I realize that I haven't updated in a while so I promise to do that next week when I'm off work. For now, I'd like to wish you all a merry Christmas!

All I want for Christmas

All Jaeger wants for Christmas is his front tooth back!


Thursday evening we were getting ready to go to Jaxons Cub Scout meeting. I was changing Mavericks diaper and Jaeger was excitedly talking to me about coming with. He was standing on a plastic bin for his cars and as I reminded him that he may get hurt doing that and he should stand on the floor, the bin tipped and he fell forward. He caught both front teeth on the drawer knob which pushed them out, almost perpendicular to normal position. Lots of blood, some tears and Josh eventually pulling one tooth out. I took him to dentist first thing Friday morning and while there is nothing to do now, we should expect the other front tooth to eventually die and need to be pulled. Jaeger will have a few years before his adult teeth come in so he's going to have to figure out how to bite/eat certain foods in the meantime. Poor guy told me his teeth were broken when he was trying to eat Thursday night!

Networking

In Wisconsin, there is a group called Spina Bifida Family Network. They organize various social gatherings to allow families to connect and hang out together. We went to our first event, a weekend away at a hotel in Oshkosh (about 100 miles from us). It was really nice to meet other families and see kids of all ages. Jaxon and Jaeger had fun swimming, but Maverick was not a fan of the echoes in the pool area. Instead we hung out in the main room meeting new friends.



Quite a few of the events are just dinner meet ups so we are looking forward to attending more!

Faces of Fetal Surgery

A fellow fetal surgery mom put together a video with 150+ fellow fetal surgery moms and kiddos.  Maverick and I appear around the 6:30 mark.

https://www.youtube.com/watch?v=gYyT2IBBLQ4

While this is not a journey anyone asks to go on, it helps to have great support structures once you're on it.  These families make up a facebook group that is a fantastic place to ping and get understanding and help from!

Getting so big!

Time flies by, as evidenced by Maverick turning 6 months old a couple weeks ago. He's definitely gone past the premie little boy and become the chunkiest kiddo out of all 3 boys. His doctor suggested we start solids and get him eating in a high chair (hopefully to help him work on his core muscles some more). We started with oatmeal and the response was initially excited and then "meh" on the actual food.



Apples was next on the menu and those ones were gobbled up :)

Spina Bifida Awareness Month

October is Spina Bifida awareness month and so in honor of this cutie, I ask that you wear yellow on Oct 25!!