Tuesday, January 26, 2010

Just a few things on my mind.

Not too much is new recently. Ethan has been doing a bit better at night time,he is starting to sleep from 8ish to 2 then 3-530 which is truly a blessing compared to what I was getting of sleep. He hasn't really reached anymore milestones though he is cooing "talking" A LOT more! The boy wont hush lol but its so cute! He is also starting to try to sit up (I think) he will be laying on his back and start to pull up and gets about 1/4 the way then falls back..he will get it in time! I think it's still pretty early for him to be even attempting it!

I am really dreading March 1st. I am terrified of it. There's so many things up in the air for him and it is always so hard not knowing. I know God is in control and his will will be done,but it is a true test of faith. My biggest fear is Ethan dieing. I keep being told that that is not a possibility, but it always is when you have a major surgery,no matter how people try to tell you it isn't. I couldn't imagine my life without my son,he is my world. In the meantime I am just trying to make that worry a distant thought. I am also concerned that this surgery is going to make his feeling/movement/bowel/bladder worse. I don't really know anyone who's little one didn't have surgery right after birth so I'm not sure what the differance may be. Yet another one of those wait and sees.Another concern of mine..that I haven't shared w/ anyone yet bc honestly I'm not sure if I'm right or not is Ethan's bowel movements..I'm not sure if it is bc of the SB or if it is bc of all the rice cereal added to his milk for reflux but he wont go on his own unless I give him juice.He didn't have a prob with it at all until the rice cereal was added then it progressively got worse so I believe that is what is going on but I'm not really sure.

Another thing that has been bothering me recently is how some people react about Ethan's SB and SB in general. I don't want my son to be treated any differently bc he has a "disability" but I also do want it to be recognized, it is NOTHING to be ashamed of. I have been having numerous comments like "good thing nothings wrong with him hunh" or "oh hes fine,I don't know why you take him to so many appts" and I could go on and on with the list but why bother! Another thing that REALLY got to me is a aquantance of mine. Her baby has a sacral demple and they were doing a ultrasound to see what was going on. Her initial reaction was big concerns her child wont walk or will have to have surgery and things of that nature (which I do understand all to well) but it turned out it is just a demple and nothing more! Well others were saying "Thank God" and "What a relief" I know it shouldn't bother me bc if I were in her shoes I know I would feel the same.But being in my shoes I cant help but think...it's not that bad. I dont know if what I am saying is making sense or not, honestly reading it it doesn't to me,but Im not really sure how to express how I feel.Overall I guess I want people to recgonize SB is not a terrible thing and it is a disability but it doesn't define you. I want people to be amazed at what Ethan and others with SB accomplish vs. pretending it is not a big deal. I know we have a long long road ahead of us as we are only 14 weeks into Ethan's joyful life, and we have many many accomplishments to come. I can't wait to see what the future holds for Ethan and our family and I want others to be able to share in that with us too!

Thursday, January 14, 2010

Awsome giveaway!

If you go down to the bottom right of my pg. you will see a link to the The Journey...it is a awsome sight w/ lots of SB info and there is a give away going on right now!! Spinabifidakids.blogspot.com is the exact link!

Tuesday, January 12, 2010

The holidays and recent appts.

What's this?Ethan's first time being spoon fed!
lMommy and Ethan

Sorry I haven't posted in awhile. I've had my hands a bit full lately!
Christmas was wonderful! Ethan got so much stuff I couldn't believe it! Who would think people would go all out for a newborn! We ended up going to Greg's Maw Maw Campbell's on Christmas eve,then his Maw Maw Whitaker's, then Dad, Lisa and Lee Lee came over. Christmas morning Greg,Ethan, and myself had our own little event then that afternoon we went to Greg's parents. Needless to say I will NOT be doing all that again. It's so hard to drag a baby,diaper bag,and presents all over town...they can come to us for now on!

New Years was nice, Greg,me,Ethan,and our friends Bryan and Trey hung out at my house and my sister and her friend Lauren came over to eat with us! We took a few pics so Ill add those here too!

Jan. 4th Ethan had his MRI and everything went fine,though I was a nervous wreck the entire day.I got the results on Jan 7th and they weren't exactly what I was expecting. I honestly thought that they were going to say there was nothing in the sac except for fluid. But instead they told me that there are nerves in the sac as well intangled into each other, as well as the membrane that keeps the spinal fluid in the spinal column is ruptured. The surgery is going to be March 1st. Dr. Heneger doesn't think Ethan will lose bowel/bladder nor will he lose leg/feet feeling/movement.BUT it is a risk.He also told us that Ethan will more than likely need repeat surgeries throughout the span of his life to keep correcting the nerves bc they will continue to grow back and get caught in the scare tissue. If the nerves go uncorrected then Ethan will ultimately lose the feeling/movement/bowel/bladder anyway.So the best option is to try to correct it.I was also told at this appt that Ethan has a cyst on his brain.I was told not to worry about it that they will just keep a eye on it and that was it. I am concerned about it but I am not going to research it bc all it will do is lead to more worries.

I almost forgot to add that I have been spoon feeding Ethan 1x a day and he loves it! And he makes some of the funniest faces sometimes! But overall he loves it!

Anyways, that is the past few weeks in a nut shell! I promise I will start updating more often!!