We have been BUSY!

Wyatt has been loving outside as usual. He loves to walk through the woods and is getting so much better at it. Picking flowers, leaves and bark off trees.  Finding every and any puddle to splash in. He learned how to spin himself on the swing and is so proud of himself. He is loving his pool, but we are seeing some worry with body movement. He has a lot of confidence and strength to build, while he does fabulous with no life jacket on, when the life jacket is on he struggles so hard with how to move his body with some floating. Bubbles are a nearly daily activity. He found the tennis ball thrower thing (meant to throw balls far for dogs) and he can get the ball in himself, throw it, then he runs after the ball and repeats the cycle. It is just amazing! When indoors he is all about books, balls, marble maze and snacks. 

Currently we are on a dog-sitting adventure and Wyatt is just so in love. We know a dog will be in our future but we also know it will come with an extra 8-15 thousand dollar price tag to become a service dog to be specialized in all things Wyatt. In the meantime, dog-sitting is where we are at. Wyatt loves to play with Luna, she is so patient with him and he gets to love on her so much… and she gets some extra cheese droppings from Wyatt. 

He had his very first weight gain since being off tube feeds! We are SO PROUD! He is broadening his eating ever so slightly and we love it. He now eats fruit snacks, pizza with meat on it, itty bitz, cake and has been licking/tasting more. We are working on healthier foods but also focus on him learning he is hungry and learning to eat more nutrient dense foods prior to getting snacks and desserts. 

He graduated from his 3 year old preschool class. At the end of the year carnival he was so excited to show us new games, his playground, and his teacher. He was very serious in his graduation photo which was hilarious, the moment they put his cap and gown on, the smiles left 😂 

We went to a great HopeKids event for Wyatt and Jonny to build a bird feeder and play at a park, this was probably one of our favorite events we have done. Wyatt LOVED putting the nails in the holes, helping daddy hammer and even push the button on the drill! It was great! 

He has a lot coming up. His allergies have been harder to manage again and I just feel like it’s unfair to make him sit for neb after neb after neb and continue to have sleeping trouble and oxygen issues. He will have an allergist appointment coming up and a second opinion with an immunologist as well. We would like the opportunity to discuss natural options and are hoping to have an open minded doctor. The one we were referred to is apparently in this category so we are excited. The excitement also comes with nerves as he has to be off of allergy medications for a week before the visit. His lungs have struggles this season and it’s been very tricky. 

He has a wheelchair appointment coming up, hoping it’s quick, easy and pain free… that’s probably not the case! 

And we had a follow up with genetics… while that’s not been a major player… it was extremely discouraging, stressful and frustrating. The doctor is giving facts of the knowledge he has, gave the positives and negatives as he has to give all information and was so sweet to Wyatt, but we just left with so many troubled feelings. I brought up the new research linking pontocerebellar hypoplasia to prematurity and was instantly shot down and told in short  of how much Wyatt has declined. We see so much growth… eating, talking, walking, learning and developing. The doctor sees hearing loss, shrinking of the cerebellum, worsening immune system status and swallowing dysfunction. I pushed back a bit…  his hearing test in the NICU was a response test to see if he responded to noises where later the hearing loss was found on a sedated ABR… two completely different tests. His pons and cerebellum were not looked at specifically with brain ultrasounds in the NICU, that problem was found on an MRI… two completely different tests. His worsening immune system wasn’t tested in the NICU, he was tested in the NICU for a specific immune disorder and then later had his full immune system tests… two completely different tests. And the swallowing dysfunction… in the NICU he wasn’t aware enough of aspirating and as he got older he developed a better sensation and started choking. The doctor pointed out his low tone and hyper flexibility…  which is related and can cause a whole bunch of other issues. We know the realities, he is harder to keep healthy despite what people see and requires more and more intervention. We know this disease, regardless of genetics, is a terminal disease and has an umbrella of life threatening associated issues. We see changes that others don’t see. His ability to be in heat is one of those things. He hasn’t ever tolerated heat, but now he will have low oxygen, a super high heart rate and even after 15-20 minutes of cooling off his temp will be 101-103… which is the definition of heat exhaustion for ‘typical’ people and a big autonomic dysfunction for a person like Wyatt with a neurological disease ((this will likely result in a referral to Mayo for a discussion)). We know this. We are realistic. But then he sings happy birthday to Jonny, and picks out gifts for him. He learns to swing. He talks more and more and repeats us. He knows the letters to his name and counts. He climbs on playgrounds and balances and jumps better than ever. So much growth. Then there were discussions of Jonny’s health and more questions there. I mentioned this being a ‘boy disease’ and the doctor agreed, but yet I have 5 embryos with the genetic abnormality and 4 of them are girls. It was hard. It was a long appointment. In the end, Wyatt’s whole exome sequencing will be run again and we will get results in 4-8 weeks to see if there is anything new or more research available for us. 

With the genetics appointment, and all of the feelings, we have decided to pursue a second opinion. I spoke to a different geneticist at a different hospital system who I thought would be a good fit, and she referred us to someone who she thinks would be the best fit, a neurogeneticist. A specific genetic doctor who has a focus of genetic diseases that affect the brain. We do not have the appointment made yet, but will make it for 10-12 weeks out so we can have the repeat exome sequencing results. Depending on all of that we will either stay where we are, switch geneticist teams and possibly look at more research and studies. 

In the meantime, hoping for good health, maintaining good eating and all the smiles ❤️