Shauna's Mom Post

M.O.M
For me, being a mom means being a fighter, being my child’s voice. I am stronger now that I am a mother. I am determined. Giving up is not an option. I will not settle. Preston, my son, is 18 months old; the time has FLOWN by. I cherish ever moment I have with him. I light with excitement every time I can actually get a smile from my baby boy; he has the most precious smile when you can actually get one.

Preston is no ordinary 18 month old so our daily routines don’t cohere with many others. Majority of the time our daily activities depend on how Preston feels or what he will actually “deal” with for the day. When Preston wakes up we MUST {force him basically} to drink an 8oz Pediasure..trust me this is no easy task but since he had lost weight at his last appointment it is CRUCIAL. Then he has to be held down and forced to take all of his medications—you would think after having been on them for months he would just give up the fight & accept this as routine..? Nope not Preston he is determined he’s going to throw them up! J The goal is to NOT let him throw up..its probably pretty comical an outsider watching any of us give him his medicine!

If you don’t know us then I’m sure you’re wondering what’s the medicine for? Preston has complex partial seizures in his sleep & has what have {so far} appeared to be “pre” infantile spasms. He also has developmental delay. We have had Cerebral Palsy thrown up a few times but no firm diagnosis yet as he doesn’t display the “key” characteristics. Preston can not sit up without support; he can not stand, doesn’t crawl/walk, & can not feed himself/hold a bottle. So…the remainder of our day consists of therapy, therapy & more therapy.& there haven’t been many weeks go by we haven’t had to go to at least one doctor’s appointment. Of course this does not make for a very happy Preston. He goes to physical therapy twice a week EVERY week & twice a month we have an occupational therapist & Physical therapist that come to our home to see him. (the state has this wonderful program for special needs children that provide this service FOR FREE).

I want EVERYONE to know we could not do all of this alone & we wouldn’t have gotten to where we have without my mom &; step dad, mother in law & my dad & step mom. They have helped TREMONDOUSLY. My mother in law left her job to come keep Preston everyday since Jon & I both work full time jobs. She takes him to his therapy appointments & works with him day in & day out. He has made AMAZING progress since she’s been keeping him. I am so grateful for the family that has helped us & been there for us when our world seemed to shatter.

My mother in law has been to just about every appointment with me since I was pregnant with Preston (we had a traumatic pregnancy experience too) & it has meant the world to me since my mom is so far away & unable to go. But it is because of my mom I am a fighter for Preston & NO ONE will ever tell me that we can’t do something. My mom taught me to be very strong willed & there was a very good reason for it. J

Overall, Preston is a great child- he is a fighter too & gets so frustrated with himself because he wants to move and be all over the place but cant quite get the coordination to do it. I know with time he will get there. So we cherish EVERY little new thing he does. He has taught us to appreciate the small stuff, like holding a toy for a few seconds to just a simple smile.

Everyday is a new day for progress. We don’t focus on what hes not doing everyday we concentrate on what we can get him to do that day, how long we can get him to stand in his braces, how long he sits up with his head level with his body..these are our daily activities. Our goal is to get Preston to do the best at what he can. Whether he never walks, walks with assistance, doesn’t talk or will talk your head off. Of course, I am looking forward to the day I have to chase him down in a parking lot because he’s taken off running from me ;) I know he will get there because God is on our side.

Preston has turned me into a better person. As a parent all you want is a healthy "normal" child- I have figured out that NORMAL does not exist..who is to determine what IS & ISNT normal?? He is healthy & is absolutely perfect. I fight for him daily & nothing will ever change that.  I love my baby boy & he has truly been the best thing that has ever happened to me. With our close family circle [mentioned above] & God we are all okay; & for that I am grateful.
“Although the world is full of suffering, it is full also of the overcoming of it.”



PICTURES!!!


 Preston's last 72hr EEG {Rockin the Do-Rag} We have another 24hr coming up soon (Prayers needed)

 Tummy time! :)
 Getting some therapy sitting up--trying to fall asleep!!

 More therapy!!
 There's that Precious smile I was talking about-- How can that night light up your life?!
 More sitting therapy!!
 Bouncy time!!
This picture has GOT to be one of my favorites thus far..This is Preston & his therapist Allison (who we LOVE) hes got on his leg braces, arm braces and is standing for her in the harness!! Love this!!


Thanks for taking the time to read :) I never blog & this is why I find I write entirely too much...I cant stop talking about Preston once I start!!

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Megan Volnoff