Monday, February 28, 2011

gone and back again 2

I really hope this blog title stops at 2. We are back at riley. They sent us home on wednesday and yesterday we came back for unconsolable crying which was of course the shunt. Lane had surgery this morning and is doing well. I will update this later this week if not before. I am crazy stressed as it is finals week at school on top of all this!

Tuesday, February 22, 2011

gone and back again :) :(

We left riley on valentines day after Lane had his shunt revision. He has been doing well this week, acting really good, with the exception of a cold. Then today happened. Now, Lane has scared the crap out of me many times. He has worried me and shot my emotions to h*** more times than I can count. Today he freaked me out. That's a first! So the story begins...

He was sick last night. Vomited a few times, fussy, sleepy the general stuff. I really thought it was a mixture of a cold and new meds as I took him to the doctor yesterday afternoon. Shunt was deep in the back of my mind but not anything that really said "SHUNT PROBLEM."

But boy I heard it loud and clear this morning. I have seen a lot of stuff being in nursing school and with Lane but I never expected what I saw when I changed Lane's diaper this morning. He woke up acting fine so I thought he was better. Then as I was changing his diaper he turned his head. I about died right then. His shunt was not visible and over where he shunt used to be was a tennis ball sized bump. It was squishy and obviously full of fluid. I freaked!

So once again I am sitting in a hospital room letting the world know a little piece of my families ongoings. The doctors are not sure what is causing the fluid so we wait here until they figure it out. They really picked a nice place for us to stay during this waiting game. Just kidding though this is one of the nicest hospital rooms I have been in. Anyway I'm asking for prayers. Good strong prayers. Any prayer! You all know prayer is what has Lane with us today so pray we will. My little boy is so strong and it makes me hurt so much for him to have to go through this stuff. I would do anything to trade him places, but that is not God's will. Lane is strong, stronger than anyone I know, and he will come through this with flying colors as always. Of that I am sure.

This is a shout out to you little man, "MOMMY LOVES YOU SOOOO MUCH!!!!!"

Thank you all, Danielle

P.S. See bottom of post for a little shunt lesson :)

Pictures from today...

A little background for new followers. Lane was born after six weeks of hospital bedrest four weeks early with a birth defect known as spina bifida. This is where the spinal cord protrudes out of the back. In lane's case it started in the mid-lower back and decended down the rest of his back. FYI they close this shortly after birth. Spina bifida causes paralysis of varying degrees generally in the legs and hips ( Lane cannot move his feet and his legs are very weak), bowel and bladder issues, and Arnold Chiari 2 malformation (ACMII). This is just the basic three. The ACMII is a brain malformation that basically pulls the brain back and down causing the brainstem to go down into the top of the spine. This causes hydrocephalus(fluid on the brain) which is treated with a shunt. A shunt is a tube that goes into the ventricles in the brain and runs down the body to the abdomen. It functions to drain fluid from the brain. ACMII also can be symptomatic as lanes is and cause aspiration and vocal cord paralyisis along with other things. Thus the reason Lane has a trach and g-tube. This is just the basics of this condition as the facts are much more extensive and detailed. I just skimmed over everything quickly. Feel free to look up anything more. O did I mention that spina bifida kids are amazing because they truly are. Thank you for taking the time to read!

Sunday, February 13, 2011

shunt woes....

Hello everyone,
I hate to report that we are back at riley hospital. Lane's shunt was clogged so we were transferred up here late last night. He had been sleepy, cranky, and vomiting so we decided to get him checked. Good thing! He is in surgery now so hopefully we can update soon with good news. They also thought he had pneumonia but that has all been cleared. Thoughts and prayers would be greatly appreciated. Thank you...

Saturday, February 5, 2011

At Long Last.....An update

To Climb Steep Hills Requires A Slow Pace At First- Shakespeare

Yes, You are seeing this correctly!!!! Lane is sitting! Slowly but surely we have hit our first major milestone and o what an amazing feeling. Lane is pretty proud of himself too everytime he sits and has an audience of applauses and standing ovations. :)

It's strange. The way it feels to want something so bad for your child. The feeling is so strong and raw sometimes it is hard to bear. You want it. You question everyone you know. You pray. You pray harder. Then it happens. Words cannot describe the way it felt to see Lane, my precious child, do something I was told he would never do, would not be alive to do. Breathtaking, that is what it was. Simply Breathtakingly beautiful.....

As you can see Lane is doing really well! We have finalized our move to Indiana so are in the process of switching therapy, drs, ect. I didn't realize how much of a pain this was going to be! Lane is doing amazing, growing and developing every day! Those little hands are getting finer tuning by the minute. He can snatch up anything instantly these days. Especially things he shouldn't have. Today he tried REALLY hard to say was so cute watching him try to work around that trach. He did get the oh several times. Such a persistant little guy.

 Lane also graduated to a "big boy" car seat today. I think he is liking the extra room. That little infant seat was getting cramped.

I have been noticing a lot more movement out of Lane's legs lately, which really gets me excited. He is still bearing weight and can actually push off his legs. He pushed his highchair back the other day off his daddy's legs. That was another YAY moment in our household.

Medically, thank goodness, I have no news. Lane is "healthy", I throw this around loosely, and has no new issues. We go back to Spina Bifida clinic on the 1st of March for check-ups so I will update then on anything new in that area.

As for general life here in Indiana, it's cold. And wet. And miserable. Why do I live here again? Snow, ice, and frigid temperatures are about the only news in this state. Yuck.

I'm ending this short, with a promise to post again soon, I have my internet back from the move now, and an apology for so long without an update. We did fall off the face of the planet but are back now! Just kidding!

Kisses for Uncle Cole~~

The Main Man!!!!

You will be hearing from us again soon. Stay warm!!