Skip to main content

What a wonderful life

I am going to start off by saying my children are simply amazing.  Each and every day they make me smile, they make me laugh, they inspire me, and they make me want to be the best person I can be.  I spend a lot of time calling to make doctors appointments and bringing Cody to all of those appointments.  When we aren't going somewhere, usually someone is coming here.  Every Monday, Cody has early intervention to help with his development.  He is doing great.  Yesterday was his biggest improvement over a weeks time since he started!  He is doing so well holding his head up.  He really likes when hes on his belly on the boppy and we hold up a mirror and he spots himself, then he has the biggest smile like he just saw the cutest thing ever... which is very true!  He is now 13lbs 3 oz.  I never ever imagined being so worried about my childs weight.  I get so anxious when the nurse comes to weigh him to see if hes gained.  He had a little growth spurt and gained a pound in 2 weeks, which was great but now he's at a stand still and hasn't gained much in 3 weeks.  It makes me so nervous.  Every doctor he see's thinks its because of his heart (except the cardiologist).  On Friday we are seeing ENT because of some breathing problems he's having.  The visiting nurse described it as stridor.  I hope they can figure it out.  He also got his NG tube taken out about a month and a half ago and a Gtube placed.  It is so much easier!!  Well, I thought he couldn't pull it out but he has!  Trouble maker.  He also had another Echo done and his VSD is not closing.  He will likely need surgery eventually but the cardiologist is trying to wait.  We are seeing them next week so we will see what they say.  Overall, he is doing good.  He sees a lot of specialists but the appointments are slowing down.  I'm getting used to his g tube feedings, all of his medications and watching him closely to make sure he is breathing okay.  He is such a fighter and we will get through this.  I can already see that he is going to be such a strong little boy.  I love him beyond words.
Hailey is doing well.  She is such a burst of energy and lightens up my day no matter what.  She brings so much joy to everyone she meets.  She talks non-stop and loves to sing and dance.  I don't know what I would do without her, She is my little diva that I love so stinkin much and have so much fun with!!  She is having some problems with her teeth so she, too has to go to children's next month to have them checked out.  I know she will be okay, she is just as strong as her little bro!
In just a couple of weeks we will be moving into our very own house!  We are so very excited to have our own home and a yard to run around in!!  We are really looking forward to it!
Thank you to everyone who reads my posts, sorry I haven't updated in a while, we have been very busy getting married, buying a house and taking care of the most precious children!! 
What a wonderful life this is. <3 p="">

Comments

Post a Comment

Popular posts from this blog

update on Dystonia and Family

I have been doing as well as could be expected.  I am back in Florida so it's nice to be with Ryan.  Although I am still upset about the whole thing, I am trying hard to smile and not let it show.  The spasms have returned and have gotten worse since the DBS was removed.  When I suck on a piece of candy or ice, my throat tightens up.  It's very scary but Im hoping it won't get any worse.  My neck also twitches sometimes and my foot spasms have come back.  My hand is curled in but if I think about it, I can straighten my wrist (not my fingers).  The most upsetting part is that I was just looking at pictures of myself the day after DBS and I had a huge smile on my face because I had made it through and then a couple weeks later there was a picture of my hand open.  I had never been so excited as I was that day.  I had so much in my head that I wanted to do now that I could use my hand and most of it involved Hailey.  Hailey helped me ...
13 comments
Read more

Pregnant With Dystonia

Well, hello there and welcome to my blog. These last couple months have been stressful, exciting, painful, happy and scary. I'm working on keeping these feelings positive! A couple of years ago I was diagnosed with Dystonia. My left hand has curled into a fist and I can no longer use my fingers. My wrist is permanantly stuck in a spasm and I now wear a brace 24/7. I get daily spasms in my feet and sometimes its hard to walk because I don't know when it is going to happen. I have muscle spasms in my back quite often and occassionally in my neck and jaw. On top of the dystonia, I have multi-directional instability in both of my shoulders, causing them to dislocate very frequently. In February, 2010 I took a home pregnancy test and it was positive! It was the greatest thing that has ever happened to me. Although my boyfriend and I were a little nervous, we smiled and started to plan our life together with our baby that was on the way. Since then, I haven't been able ...
8 comments
Read more

Updates ❤️

It's 430 in the morning and i wake up to Max's whimper over the baby monitor. I get up to go get him and the first thing I notice is that I cant open the door. My left hand is so weak I cant turn the door knob. I try with my right hand even though I have no feeling in it. As the door opens my forearm goes into spasm and causes excrutiating pain. i've had quite a few problems with my arms and hands over the years, but this is the worst it's been. The Botox wasn't working so we tried a new medication called xeomin and my left hand seems to be opening a bit, but it's completely useless because it's so weak. I can't do anything with it. My right arm has been affected by the dystonia, but also I have carpal tunnel so the two of those together also makes doing anything very difficult. Hopefully a DBS adjustment will help soon. After Max was born, I was diagnosed with a pituitary macro prolactinoma. I didn't know what it was at first, but then found ou...
Post a Comment
Read more