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!

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...

Shunts...
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!

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...

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 uh-oh...it 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!!

                                                                   Danielle

The new year...and a little more...

2010 ended well at the deisher house! Lane recieved every toy available for an eight month old within three states at Christmas (I'm really not kidding) and we all had a great time with family and friends this Holiday season!

The new year has begun and we are looking forward to it joyfully. I am ready to spend the year with our little guy and we are praying hard for a HEALTHY year for Mr. Lane. We are looking forward to possible removal of the trach and g-tube this spring and maybe a walking baby! As for me I'm looking forward to a summer vacation with my little guy. Three full months of fun in the sun with Lane...count me in!!!!

To begin this new year we have a to do list( I swear it never ends). We are trying to move across the river which envolves new pt, medical supplies, pediatrician, and yay basically everything but thats ok! I am starting nursing classes in just a few days and Roger is working like a mad man to make it all happen! I love you hunny. :)

So since Lane is a healthy little guy I think a list of his new tricks and trades is an approprate way to inform you all of his progress!
Lane is now...
able to roll over!!!
bearing weight on his legs...amazing
sitting with his hands between his legs
blowing bubbles
kissing
pinching
taking anything you have
lunging for anything he wants
reaching for people and things....mostly things lol
fighting sleep
having a serious fit if you take something away
"talking" as much as a baby with a trach can!!!
removing the vent from his trach and eating it....
fully eating orally...bottle and baby food
making these awful faces that only a redhead could make
crying for his mommy for however long he must until the "holder" gives him up
critically examining objects
still sucking that thumb
working on the sippy cup
getting some hair finally
pulling his legs up to a crawling position when on his tummy
and...well just getting spoiled rotten...
    I'm sure i have forgotten many things, but he is simply amazing!!!!!

Of course pictures....

giving himself his neb..

santa baby!!!!

milk and cookies

Christmas Morning!!!!

What's in my stocking????

Opening my toys

It's just too much :)

uggg cold.....

Hello Everyone,
The Deisher household has been plagued with a virus as of late. It started with me, then Lane, and Roger followed closely behind. The worst part of it all is none of us are feeling 100% better. I worry about Lane because he has not had his RSV vaccine yet due to shipping problems and the increased risk of respiratory infections. He acts good but slightly lethargic and just sick enough to worry his mommy sick. Otherwise, we are all doing great! Lane is getting bigger, on full oral feedings now, and although we are behind on gross motor skills, he is really perfecting his fine motor. I can tell already he is going to be a busy body. He wants anything and everything within his reach! Hopefully, the need to get stuff will begin to urge him to MOVE to get it!!! I'm posting a few pics though I admitedly have not done well taking pictures with all this sickness. :) Have a Merry Christmas Everyone and keep an eye out for pictures of Lanes first Christmas!!!!

Lane and his cousin Dixie Jo

Daddy and Lane

We're in the Army now :)

o so happy

Mr. Lane!!!!

He had a rough day at work and is very tired!!!lol

What a perfect face to end with!!!!!

Merry Christmas From the Deishers!!!!!

Finally an update

Wow...it's been so long since I have updated. My sincerest apologys to anyone who has wondered if we fell of the face of the earth. I'm not sure how to sum up the last few weeks but here it goes.

You know those times when life is just hectic, your world is spinning faster and faster and then, quite suddenly, it stops. Thats the last few weeks in our household up unitl today. The end of the semester is leaving me a wreck of nerves, plus being sick has not helped. Roger is working like a mad man and Lane is just getting cuter every day. Until today  I never seem to have a spare second. I took my last class test today. I have been studying so much for all these last few tests. After feeling like a tornado, I headed home, walked in the door, and my world stopped. After a horrid week,  I saw the light at the end of my tunnel: and let me tell you it's a beautiful light. Big blue eyes, rosy cheeks, and glistening white teeth I could not ask for anything better. The moment I walked in from a long day of school Lane just lit up. I swear it was like he said "mommy I know you have been sick and crazy busy with school when i go to sleep at night, but I KNOW you are basically done!" He was so happy!!!!

Sooo Lane is doing great! My perfect amazing little boy who finally has no news to retell. He is growing and changing daily and I wish so much sometimes that I had a freeze button, that I could keep him this little forever. My solitude comes at night when he lays his little head on my shoulder, his tiny arms wrapped around me, and goes to sleep. He is so peaceful and the world lifts off my shoulders as he sinks into them.

Quite simply this update is about how much I love my little  guy. Cherish each day you have with loved ones. I love my little man and thank the lord every day for the blessings he has bestowed upon us.

Sincerely, Danielle

P.S. Lane had pictures done...
http://bensonphotography.zenfolio.com/p622740196
check them out!!!!

Update TIme

Sorry it's been a while but I Really have had nothing to update about. Lane is doing amazing and is getting REALLY close to sitting up by himself. I'm still in school and Roger is doing great. The mri showed no change thankfully:) Here are some pictures! I have added some nursery pics finally! Thanks for painting it Grandma Karon!! Hope you all have a great Thanksgiving!

lane

finally some nursery pics!!!!!

nursery closet

lion and monkey in nursery

crib

holdin his bottle like a big boy

reading just like mommy

snoozin

still studying

nursery again...

6th month riley trip~!

Hello again, yesterday we got back from our two day trip to indy. Overall we had some really good news and it was the best trip yet. Mary, Lane, and I started up Tuesday morning and had a swallow study first thing. Lane passed!!! He is safe to swallow and eat! However, he adamantly refused to suck on the bottle so we are going to see speech therapy. We decided on Wed. morning to try ( with dr approval) adding a few drops of chocalate syrup to his formula and it worked! Lane loves chocolate formula so we are simply going to slowly increase oral intake and decrease tube intake for a few weeks until he is completely off the tube. He also has started baby food and he is loving that too. We are very excited about this new process we are finally able to enjoy. We went to clinic later Tuesday and again got some really good reports. Lane is doing well and they just want us to add occupational therapy every week. That is easy enough! We also had the pleasure of seeing Jeremiah and Hannah Mcadams on Tuesday and boy is he cute. He is doing really well. Pictures of that meeting to follow, and no we did not plan the shirt thing :) Tuesday evening we enjoyed some really good pasta at the Old Spaghetti Factory and I highly recommend it. Wednesday was great we had excellant reports from neurosurgery and urology. The urologist had a really great report! Overall things are going great and Lane is loving his newfound taste buds! We head back the seventeenth for an mri! Wish us luck. Keep looking for more updates, Danielle.

Me, Lane, Jeremiah, and Hannah

Mr. Lane....

Update

Sorry it has been a minute for an update. Lane has had an awful cold and with the trach it has been an absolute nightmare! He is finally clearing up a bit and getting back to his old happy self. PT is still coming though he has not been much of a trooper since being sick. Nov 2nd and 3rd are going to be some big days for us. We are traveling up to Riley for a two day round of appts. We are seeing spina bifida clinic(developmental, ortho, and uro), neurology, opthamology(they want to check his eyes), pediatric surgery for more granulation tissue on his trach, and the big one A SWALLOW STUDY! Please keep us in your prayers that these go well for us! I am super excited to go because we will be meeting a little guy lane was in the nicu with that has spina bifida. This will be the first spina bifida baby I will meet aside from Lane of course!

I also want to touch on a subject that has rocked the spina bifida world lately. A mom considering terminating her baby because of spina bifida. She posted asking us to comment on her poll and needless to say she was not greeted by all kindly. I tried and tried to get it off my mind but eventually visited her blog and tried to reach out to her. The good news is she is feeling good about keeping the baby. This situation brought to light a topic that I feel needs to be breached by someone. People are faced with this decision every day and it is estimated half of babies diagnosed with spina bifida are aborted. This to me says that we need to reach way out and show the world just how great these babies are! So I am going to start looking into doing something in our area. What I'm not sure, a walk for spina bifida maybe? I would really appreciate any ideas. I want to raise awareness in my community about spina bifida and let people facing this diagnosis know it's not a death sentence or even a "lousy life" sentence. Let me know if you have any ideas!

Another spina bifida mommy has been doing a "faces of spina bifida" thing on her blog this month. I want to close this with her blog page, check it out. http://www.themclellands.blogspot.com/

Of course some pics....

lanes first kiss:)

lane payton

sittin like a big boy

in his boppy