January 3rd we welcomed in a sweet, beautiful baby boy to our family!
Joseph coded when he was born so the absolutely amazing nurses did chest compressions for 30 seconds & he had oxygen for 5 minutes. After that he was on an iv for fluids but required no additional medicine or oxygen. He learned to eat really quick and we were sent home a few days later. He started therapy for his hand at 13 days old. He started seeing a physical therapist as well as an occupational therapist. He is making progress it is just slower than we expected. He has had a n mri & it came back normal, he has been cleared by an ent, &; cardiologist. Everyone expected that all of this was just "positional" (the way he was crammed inside me) & that after a few months everything would be fine.
As he has progressed in age, he has fallen more behind in his ability to achieve milestones. He receives PT, OT & now Speech therapy at the house. God took care of us and has provided us all the amazing therapists we need, exactly when we needed them.
This is in SA where we used to go twice a week to see Kristen & Kathryn.
Stephanie is the current PT
This is Lisa the OT
Joseph's current updates this week are ....
Orthopedic - he is good bones/structurally, he is referring us back to the neurologist to see why he s not doing the things he should at this age - tripod sitting, sitting by himself, weight bearing on his feet, bouncing in a jumper, etc...He said his bet he is taking his time because nothing really stands out as to why this is the case
Swallow Study - He has a swallow delay, and aspirates his liquid. He has only aspirated enough to where his body was able to absurd the fluid in his lungs so he has not had pneumonia yet. It is called silent aspiration because he doesn't cough most the time. He will need oral motor therapy, vital stem therapy, & thermal therapy
Speech Therapy - His therapist came and showed me a way to feed him that will help with reflux & aspirating. She also told me an exercise to do. She wants the pulmonology appointment sooner & suggests a gi dr due to really bad constipation & he cries so hard to go poop lately.
Pediatrician - agrees it should not still be that hard to poop, the reflux, snotty nose, congestion, etc should have been done with my now: great at referrals and get them to the dr the day I call, they are trying to get him in sooner to these specialists since he is getting worse in some areas
GI appointment - being made tomorrow, hopefully we can get in soon
Neurologist appointment September 5th
Pulmonologist appointment September 19th
Neurologist in Austin (works in the office with a developmental pediatrician) November
Developmental pediatrician - we are waiting to see if the dr will take our case
He is making forward progress with his PT & OT. He can roll all over now, both ways, which is great. He is getting better at weight bearing with his hands. His torticollis in his neck is really not an issue any more. He is still tight but doing great. At this point, we have no reason why he has contractures in his hands still & why he is developmentally delayed. That is what we are trying to figure out. Hopefully, with seeing a pulmonologist and checking that the lungs are working properly and get the aspiration taken care of, he will start progressing faster. Getting the constipation issues worked out will help as well. Those two items definitely hinder his OT. On the 5th, I will be requesting a very thorough scan from the neurologist. I am sure he will want a ct scan to check things again. I am going to ask about genetic testing to see if he has a chromosome issue. That involves a geneticist & blood work.
Good news is that no matter what is the reason why he is delayed, you still keep on the same path. We are blessed that he is so happy, smiling, and cooing! He does extremely well all considering & we are thankful that he has been added to our family!
JORDAN! Sweet, spunky, crazy, smart....punky, scooter butt, stinker, princess
Love her to pieces! she is a big girl with a big heart, wild imagination & love for animals!
Jordan will start dance class in September & pre-school on Tuesday/Thursday. She loves school & has a passion for dancing!
The question I am starting to get asked a lot is how are you?
- I am coping pretty well. My world is nutty & crazy busy. I cry, laugh, hug and love on both the kids. I am going to be honest, it is not all fun & games & the older he gets the more I suspect there maybe a reason for all this. A diagnosis is going to come. I am well aware of that now. Being a certified special education teacher, I can not help but ponder what I think maybe going on or how long this will all last. All I can do is allow myself to have emotion & realize that it is ok when people ask how's it going to be honest. I never lied about anything or pretended there was nothing wrong, we just didn't know a whole lot & still don't. Yes, I am still on meds for the depression from before he was born. They seem to help & provide a stability of emotional support so I am not a permanent ball of emotions. I love him dearly & am 100% certain God has a reason for Joseph, a purpose for our family & a life more abundantly than we ever imagined. He is my rock & salvation
What are your days like? Can we come see the new house?
The answer to these is that my days are crazy, therapists are here quite frequently & it is completely fine & appreciated if you stop by when we are home. There maybe other people here, Joseph maybe upset about therapy, Jordan maybe screaming but please, I am begging, come over! It is no big deal at all & actually is a pleasant surprise when company comes over. It is comforting to not be here by myself with the kids. I can handle it, yet we are always loving friends and family with us. Please, come see our new house, come hang out & enjoy life with us.
Joey is working for Dibello Architects & loving it! He is able to come home everyday for lunch. We love that he can do that & appreciate all the time we spend with him. He is a fabulous father & husband. He supports me in all decisions. He loves the kids & is great with both of them. I can not express enough about how mazing he is!
Hope this explains everything & please ask any questions! I promise it is ok and we do not mind at all. We are happy to share what we are experiencing.
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