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

Six Months!!!!

Lane is six months old today!!! I can't believe I just typed that. Time has flew by oh so fast. It doesn't seem like it has been six months since I first met my little fighter. This milestone is a very special one for me and Roger. The doctors told us when Lane was born he had trisomy thirteen and wouldn't live to be six months old. Boy were they wrong. Lane is six months old and doing amazing. I remember the feeling when they told me he would not live long, at first I was mortified but then I became hopeful. Now I'm glad I set the thoughts aside for the most part and stayed confident. Lane does not have trisomy thirteen and he is expected to leave a full life. I love my baby boy and I am so thankful for him. God works miracles, I have one.

pt and pics

Lane had pt today and that went very well! He held his head up to 90 degrees on the floor and rolled very well. I was super excited at how well he did. I just scheduled an appointment for nov 3rd with lanes neurosurgeon to see about getting a shaping helmet for his head. Well thats all for now so here are a few pics i took today.

he was watching tv lol....but great head conrol

ready for the day-a non slobbery face

my chunky baby :)

mom, please help me sit up...this is getting old

Lane Payton

this is his back scar i though i would share since i never have before this was taken today. its amazinly well healed since the drs didnt think it would because he was so small

pics

Lane is doing great with his boppy. I tried it today and he could lift his head! I love how he looks so sad in one of the following pics

spina bifida month

hello, just a quick update. Lane is doing well and he is getting bigger everyday. Ill be putting up new pics soon! I wanted to let everyone know we do finally have nursing and i love her! she is great with Lane! For spina bifida month there are some spina bifida moms doing some great things. First there are some selling tees and they are really great. I already ordered one. Anyone can order but orders must be placed by the twelvth and they are shipped directly to you. Their web page is http://urbanupcycling.blogspot.com/ Also there is a Lady doing feature kids everyday so check that out as Lane is going to be featured this month. All the kids have spina bifida and its a really cool thing to look at. Her address is http://themclellands.blogspot.com/ check these out and please comment me to let me know what you think....

update for september

So October is Spina Bifida awareness month and I want to start this off by telling all you ladies of childbearing age, trying or not, to please take a folic acid supplement. It is very cheap and significantly lessens your chance of having a baby with spina bifida. Also, babies born with spina bifida are miracles, and they are children who can love, and live a happy, full, productive life, but many are still aborted during pregnancy. Please take a minute and just google spina bifida, or go to my very first post, and learn just a little bit about spina bifida and pass the word along.

Now.... what you really want to know. Lane is doing FABULOUS. His doctors appointment went great. He is 14lb 9oz and 25in long. Thats a long way from the 4lb 12oz 17 in baby he came into this world as. The doctors did have to do a minor surgery the following day to remove some tissue from his trach stoma, and that went well too. The major news....they are going to try to take out the trach this spring. YAY!!! Lane starts physical therapy this week so we are excited about that. Nursing starts tomorrow so Roger can finally get back to full time work. As for Lane, he is the happiest baby I have ever seen. He is so full of smiles and coos and laughs. He has two teeth which is amazing for a five month old. Lane has said mom three times and my mom and grandma witnessed it so I officially declare mama as his first word. Sorry Daddy. He is getting some nice head control and PT is going to work on starting to get the skills ready for crawling. He is growing up too fast. Goal wise we are hoping for a swallow study soon to get Lane on a bottle finally. Otherwise he is just a happy, amazing little boy. Be looking for more frequent updates as my internet is finally in my house. Here are some pics of the cutest baby ever of course! Love ya, Danielle

a long awaited update

an update at last....so sorry to all you followers...i have been crazy busy. Lane is doing exceptionally well. Since coming home with the trach, he is so happy. He smile constantly and has started holding up his head really well. He does have an infection in his trach. Thank the Lord for insurance because a ten day supply of antibiotics was 2250. I was shocked. Nursing is suppose to start this week so we will finally get to get back on trach with roger working full time. Part time has been a killer. School is well for me though juggling a house, a baby, and an intense school load has been a little stressful on me. Lane is up to fifteen pounds, he has grown so much from that little 4lb 12oz newborn. I am so thankful for him, he is such a good baby. We head back to indy on thursday for a check up and I am going to push them to start checking his vocal cords and do some swallow studies in hopes of getting him on the bottle and off the trach soon! We will see how it goes. Other than that there is really no new info. The trach has become a part of our life and is so simple. Not hearing him cry has become a norm for us and we tune into every little sound he makes, be it a movement or a breath, so I wake up at night when he is awake just because his breathing is different. Life is good for the Deisher family and i want to thank you all for your prayers that have made that possible. I'm posting a little entry here and some pictures. I will make an attempt to update after Lanes appointment, but no promises. God Bless.

someone asked my mom why is it i, the good kid who goes to college, makes straight a's, and got married before having kids, got a baby with problems and disabilites.....my answer....god gives these very special babies to the people he knows will take care of them and love them, the ones that are strong enough to withstand anything and fight ANYONE for their child, yet weak enough to crumble at every smile, tear, and laugh. He chooses the ones who maybe believe a little less...then breaks them down till they can see only HIM and find their way...the ones selfish enough to take a moment to themselves because if they didnt they would fail greatly....God KNOWS what he is doing when he gives babies their home...he doesnt make mistakes, people do, God gave me Lane for a reason that I'm not even sure of, but if I could change it, make him healthy, i wouldnt because he has taught me more about life than anything else....mommy loves you with her whole heart baby boy

mommy and lane

kisses from mommy

going to grandmas

trach teaching.....complete

We finished our last trach changes today. Now we just have forty eight hours of parent care and then we are coming home!!!! I cannot hardly wait! It looks like Wednesday shall be the day. Lane has so much equipment to go home with now. I will be running a small hospital out of my house....just kidding. He does however have a semi full of machines: suction machine, humidification, oxygen monitor, portable oxygen, apnea, two huge boxes of supplies, and more coming on monday. We are gonna have to build another wing onto our house. Thank you everyone who prayed for Lane during this stay. We prayed hard to not have the trach, but God knew what was best and I am so glad I decided to listen. Lane is so much happier now. Bless all of you. Danielle