February updates

Hi everyone! Sorry it's been so long since our last update...where does the time go?! We've been our usual busy selves with little man. Physical therapy twice a week, chiropractor on Mondays, and of course all his doctors and specialists want follow ups, so we never seem to really slow down! :)

Where to start.....well, we are now over 3 weeks since Jameson has been able to wear his cranial helmet. This is a huge bummer as that helmet is really time sensitive as far as how long it will work for him. We obviously want to avoid any sort of jaw or facial reconstructive surgery in the future so the helmet is a must. We started on a new antibiotic for the blister on his head on 2/7 and its already made a huge difference. It looks better in the last few days then the last few weeks so prayers that he can get his helmet back on next week.

We had our 9 month check up last week and were happy to get some updates from Jameson's primary doctor about what our next 6-12 months will look like. We are doing another hearing screening in March to see if little man's hearing has improved and where we should go with that. We have noticed his hearing seems to be getting better over the last few months so hoping we don't have to worry about hearing aids or a cochlear implant. Jameson also needs to have surgery by 18 months old to move his testicles out of his abdomen. Unfortunately, it can be quite common with genetic disorders for this to happen to babies and if they aren't moved out of the abdomen by 18 months then there is an 8x higher risk of testicular cancer. Along with surgery, we want to have his MRI done simultaneously so that he doesn't need to be under anesthesia twice.

We definitely have another big year full of medical adventures coming up for little man. While it can feel like we're always going at full speed it's worth it to see the small bits of progress he makes every day. We really do appreciate everyone's continued support and love for our little guy!

Loving life

It's been over two weeks now since I was let go from my job and I wouldn't say I'm missing it at all! Being able to stay home with Jameson every day and take him to his weekly therapies and doctors appointments has been amazing. I know I will have to go back to the real world eventually but I'm definitely in no hurry! ;)

In other little man news, Jameson weighed in at 13 lbs 11 oz yesterday! That's on top of fighting an ear infection, going on pedialyte for a week when he had a bad cold, and dealing with helmet sores. We even introduced some baby foods to him, just a small amount in each check a couple times a day. He's done very well so far, doesn't show much interest in it yet but at least he isn't spitting it out or choking on it so that's good in our book. We also met an amazing family yesterday through Jameson's speech therapist. They have a 3 year old son named Sullivan who also has some medical challenges but is an extremely happy and thriving little boy. He is still working on communicating verbally and standing on his own but he is an awesome little dude! It's definitely my goal this year to seek out more families like this and continue to both learn and share our own stories.

Hope everyone is well and staying warm in this cold weather :)

Staying focused

Hi everyone! I'm writing some updates for everyone while little man snores next to me in bed. :)

As most of you may have heard, I was let go from Wells Fargo on 1/6 after 4 years. I'm not much of a confrontational type of personality but I'll say that if a company you've given so much to can't be understanding of your child's medical issues then it's not a company I would want to work for anymore. Over the last 8 months, our family has been thrown a curveball...and I wouldn't give up any of the doctors appointments or time I've spent with Jameson in the hospital for anything. Especially not a job that doesn't understand, life is much more important than that.

In other news, Jameson has been doing AMAZING with his helmet! Last night he actually slept in it the majority of the night...I've attached a photo below of what he looked like next to me when I woke up this morning. I'm so amazed at how he continually surprises us. The only issue we're having with it is him getting very sweaty and a little stinky head. HA! Oh well, just means more warm baths for little man which he loves. :)

We also had our first chiropractic appointment today. I was very nervous about it but he did really good. His chiropractor said his spine and hips seem symmetrical which was great news for us. She also said she was surprised with how strong he was, after hearing about his medical issues she thought he'd be very weak but he really has quite a little personality. It really feels nice to hear that from someone just meeting him for the first time, especially when you feel like he's not making as much progress as we'd like.

Thanks for stopping by and checking in on us, we appreciate your continued support and love!