I'm back! Did you miss me?

 HI! It's me! We are all still alive and well! 

I cannot believe it has been almost 3 years since I've posted!! Wow! Life really gets going and it does not stop. Hard to get back into the routine of writing and sometimes I get in ruts and it's hard to get down what I want to say. And a lot of the time it feels like groundhog day around here! SO, let me catch you up quickly on the last few years! 2022 was the only year Henry was not in the hospital and had no major procedures! #winning 

One year out of 5 ain't bad, right?? 😑

Let's get into it, shall we? 

Henry is growing like crazy! He has his mamma's long legs and his hair; everyone is envious of! We can't go anywhere without someone commenting on his amazing hair!

The best update is that we found a full-time nanny!! She's absolutely amazing and we are so incredibly lucky to have her. Henry loves her and we love her too!! Seriously, she's the best. I am never letting her leave! She helps with every doc appt, takes him to Chiro 3 times a week, has been on vacation with us. We are so grateful for her!! I'm stressing about him starting school and losing her!

Medical updates:

Neurology

A couple of years ago we noticed some abnormal eye movements and potential seizure activity, so we took a video and met with a neurologist. They didn't think what we were seeing was actually a seizure, but they did start him on some meds to see if we notice any changes.  They started him on a seizure medication called Keppra and we did a 72 hour EEG to monitor his brain activity to see if we could capture any seizure activity. Thankfully after about 24 hours, the doctor was confident he was not having seizures and let us go home! Those hospital couches are awful! But Henry did an amazing job with all the probes and wires on his head. 

We were glad there were no recorded seizures, but we did keep him on the Keppra for a while because it really changed his mood. In a good way. He was less fussy and more content which is huge for him given for 2 years he was constantly fussing unless he was being held or sleeping!  

But after about a year, I started to question the meds. I didn't want him on something he didn't need to be on and in doing some research, I found out that the medicine he was on can cause headaches, aggression, irritability, etc. and this is what he was showing symptoms of around 6-8 months after starting the medication. Yes, in the beginning his mood was better but once the meds were in his system longer, he was fussy all the time and just wouldn't settle. So I weaned him off and ever since he is a different Henry! He's happy more often, reactive, interacting, smiling, babbling and just overall so much more content! Which makes everyone around him happy! 

Vision

Henry's always had issues with his sight and his eyes being smaller than normal. At times his eye doctor has had concerns about Glaucoma. His pressure is higher than normal, but sometimes it can spike too high, so we have a pediatric Glaucoma specialist that he sees regularly. He's had a few exams under anesthesia, but everything is looking healthy! 

We still don't know if/what he can see, it's next to impossible to keep his glasses on his head because he is constantly moving it back and forth, so while it's important to try to help his brain learn, it's one of those battles that is not worth fighting too hard right now. 

Gastro

We meet with a gastro doc in May of 2023 because Henry's acid reflux seemed to be getting worse. She performed a scope down his throat to look for any inflammation or issues, but luckily everything looked good! She did expressed concern about his lack of weight gain and wanted us to explore thinking about a NG tube. But at that time, we were not ready to take that leap and kept trying to get his volume of feeds up by mouth. 

Ortho

Henry got a new back brace, his 4th one I believe, as he outgrew his old one! Woo! And his ortho doc did a spinal MRI to check if there was fluid build up or any odd connections that might be causing any issues. Thankfully, that was all normal! 

Henry's feet have been an issue for a while. They have progressively gotten worse over the years and turn completely inward. We regularly meet with his Ortho doc for his scoliosis and have talked about his feet for some time. Surgery wasn't a pressing thing earlier on, but as he's growing, the AFO's (leg braces) are not correcting his feet. His doctor explained it was a tendon and ligament issue and he would most likely have to have corrective surgery if we ever wanted him to have a chance to walk or bear weight in a comfortable manor. 

We discussed serial casting, where Henry would be in hard casts and get them changed every week to stretch the tendons and help his foot grow straighter. We did meet with that doctor and we agreed it was not going to fix anything. His issues were more internal and not going to be corrected by casts or braces. 

I really struggled with putting him through such an invasive surgery for a while and kept putting it off. A friend of ours recommended a doctor in McMinnville, so we met with her and her methods to help were a lot less invasive. I was hopeful, this would be an 'easier' solution for all involved. 

But God had other plans. That surgery was cancelled two days before it was supposed to happen and we were back to the drawing board. 

Therapies

Henry is still in PT and OT once a week, and started with a different speech therapist as well. The downfall is she is about 30 minutes away and only does in clinic. We met with her once or twice a month for a little while and she was able to guide us with devices and things to do to help with his communication. 

We were referred to BEST (Blind Early Services of Tennessee) and Henry now receives Vision Therapy once a week and O&M (Orientation & Mobility) twice a month. He responds to a lot of light and will focus on some objects. He turns when he hears sounds or someone's voice and is exploring more with his arms and hands, which is a huge development for him! He really seems to enjoy these therapy sessions. 

I love all of his therapists! We have been so lucky to be with Tennessee Early Intervention Services. All his therapies are through the state and are in-home, which is a game changer! 

This catches you up through the beginning of 2024! 😆 Few dull moments around these parts!

Overall, Henry's doing really good and I am thankful for that! Yes, some days are extremely difficult and test my patience and confidence in being his mother, but those smiles, laughs, and snuggles make it all worth it! 

I'll be back with more updates shortly! Henry ended up having his corrective foot surgery, an NG tube, and a G-tube. It was a very busy and stressful July 2024 - January 2025!