Developmental Levels & Traveling

This is a very over due post. I have just had a very crazy past month with doctor appointments and traveling for a funeral. First up is John’s results from ECI on where he is developmentally. Adaptive average is 16 months with a 40% delay. That breaks down to self care he is at a … Read more

Great-Grandpa & ECI

I went with my mother this past weekend to visit my grandparents (particularly my grandpa) in San Antonio. John is named after him and my father. John is my grandpa’s middle name and David is my father’s first name. So I was really wanting my grandpa to really get to meet John. The main reason I wanted John and him to meet was because my grandpa has pancreatic cancer.

Grandpa
Grandpa

My grandpa has stopped taking chemo because he wishes to do so.  He is extremely weak as well. I always remember seeing this kinda chunkier man when I would go visit them. Also pulling on his key-chain (he had a retractable key-chain that was attached to his belt), his Snap-On Tool truck, kolaches, his brisket and cabbage soup,…so many memories that I will always cherish. I love him and it was really hard seeing him the way he was this weekend. It was like he was himself but not at the same time.

While we were there he got to hold, talk and kind of play with John. I don’t think John will ever really remember those moments but they have been seared into my brain. It was hard to see him having those interactions with John, being that sweet loving grandpa that I remember. I even had a little meltdown inside watching him just hold John’s hand in his.

Holding hands with Great-Grandpa
Holding hands with Great-Grandpa

John loved being held, talking, & playing with his great-grandpa. John was full of smiles.

Great Grandpa & John
Great Grandpa & John

ECI came by Monday to asset John for his physical therapy. We already knew he had the muscle tone of a 2 month old and they confirmed it. The therapist wants to come 4x a month (1x a week basically).

Our goals are:

Within 3 mons to withstand tummy time at least 5 mins and rolling. Within 6 mons to have him move at least 5ft across the floor. Could be done anyway (rolling, scooting, crawling,…) as long as he moves the distance.

 

4 Generations
4 Generations

 

-Jacqueline

I can do all things through Christ who gives me strength. Phil 4:13

Stress, Doctors, and Therapy, sigh…

I’ve been using this blog as a way to really update friends and family members on everything that has been going on with John. Since we all know he has a lot of medical issues that are being addressed. I have also started using this as a reminder of what has happened and a way to release some of the stress of being a mom to a special needs child.

Don’t get me wrong. I love John very much, but there are times that I just need to walk away for a few moments and have some “me time” to wind down. I feel like I was constantly on the go and just a caregiver not his mother before having my mother as his home health nurse. With her, now I am starting to feel more like his mom vs. just a caregiver.

It’s hard to see your child go through so many appointments, see so many different doctors, connected to so many cords, etc… Most days I feel like I am a first time mom all over again because I have no idea what “John’s normal” is. So when he starts vomiting a feed I have to mentally run through a check list of what I have to do and why he would of vomited. Same with when any of his alarms go off. I have to check to see why and what alarm is going off.

It can be physically and emotionally draining with having an appointment almost every week (or several in 1 week). As well as dealing with all of his needs day in and day out. So there may be days that if you see me that I will look exhausted and probably haven’t slept much.

Thankfully I have a very supportive husband who helps as much as he can when he is able too. He helps numerous ways around the house and with our boys. He is my rock and listens when I need to discuss anything.

UPDATE FOR JULY 31ST:

ECI (Early Childhood Intervention) came out today to assess John. He will be needing Occupational Therapy 1-2 times a month, Physical Therapy since his physical structure is the age of a 2 month old, a Nutritionist, and Speech Therapy.

-Jacqueline