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

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

first trach change...

Lane got his original trach out today and a new one in! This is what we have been waiting for to start training to work on going home. Roger and I now have to learn to change the trach. This is one step closer to bringing him home!!! I can't wait to change it tomorrow.....it should be interesting and terrifying. This is short but I am headed back to Lanes room.....

Tuesday!

Nothing new today. Lane is still sleeping and he did well throughout the night. Roger and I are still learning the trach care and have a few more days of teaching before we get to change the trach. I am excited and nervous about the first time changing the trach. I'm just scared to death I wont get it back in but I am sure that I will. Lane is such a little ham. Last night he was just smiling and "cooing" although he is not making noise now you can see his little mouth working away. I am going to start looking for a sign language instructor as soon as I get home and settled. Lane will be able to talk eventually, but it is still a good idea  to learn and teach him. At nine months old babies can start learning sign language. Hopefully all is well today....if it is I won't be updating again until tomorrow. Until next time.....

!!!!

well roger and i just got out of our first trach class. it went well and this is all going to be much easier than we thought. we actually got to hold lane yesterday and it was AMAZING to be able to cuddle him in my arms again. I am so ready to come home with my little man. It appears it will be longer than a week before we come home. Hopefully by next tuesday but it may be a few days more. this is short but im going back to my baby. God bless.

sunday....

Goodmorning, we are hoping to get Lane off the vent today. Just a few minutes ago when Lane was throughing a fit I actually heard the tiniest little squeak. There is hope for us hearing him cry! He is adjusting well to the trach and vent. The nurse told me today that she will let me hold him even though I'm really not suppose to!!! I'm really excited. I have only held him twice in one week. Prayers are working and although I was very much against a trach...Lane is feeling so much better. Thank the good Lord for the hand he has had on my precious little boy. Thank you all for your prayers.

trach is in

Lane is out of surgery and stable. He has a trach and a g-tube. More update added to this post later

9 pm- Lane is doing well and is awake from surgery. His trach is in and he is on a ventilator. I did not realize that he would not be able to cry, but it is so. Don't know how we will manage that. His g-tube is significantly small and should make things easier. For the first time ever lane has nothing taped to his face or coming out of his nose or mouth! The trach is going to be a lot of care but I really feel that Roger and I did the best thing for Lane. We will manage! Hoping Lane is off  the vent in the morning and we can start our training for trach care. Goodnight!                              

trach!!!!

Lane is four months old today and Roger, the doctors, and I have decided a trach is the best option Lane has. It is not by far the ideal situation and is going to dramatically change my lifes, but we will get through it. School starts for me in one week so we are hoping to get the trach and be home by next weekend. I am looking into a home health nurse to sit with lane while i am in class. I want to take a minute to vent just a bit. Facebook drives me crazy. People always complain about their lives and how bad they are. From supper being burnt to some little highschooler talkin crap it is pitiful. People need to step back and look at their lives. There is so much worse and I am seeing it everyday and these people who will not be taking their kids home still have a smile to offer. Come on....get over it. Ok I am done. Now lane is doing good and it is killing me to be on the computer and in his room so this will be short. Prayers are needed so please continue. Thanks for the continuation of prayers.

vent is out....

Lanes vent came out around 3 this afternoon. It was the most amazing thing to see him moving and breathing on his own and he actually was LOOKING at me and HOLDING my finger. O i love him so much. He is stable and on a nasal canula for oxygen. I cannot hear any stridor but the doctors have not been in so I will not assume anything or get my hopes up too soon. Lane, the poor baby, is so swollen, he looks like he has been beat on with two puffy, black eyes and his swollen hands and feet. I just got done holding him for the first time since monday. I must admit i teared up. We are still hoping he clears up and does not need the trach so please continue praying. Roger and I finally got a room for tonight in the Ronald McDonald house in the hospital so we are gonna finally get a good nights sleep out of a waiting room chair. It's only for tonight but it is so much better. Well we are going to eat then I'm headed back to our miracle baby.

Danielle

...................

Lanes mri results came in this morning. His chiari malformation is not the likely cause of the vocal cord paralysis. Thats a good thing but the problem now is what is causing it. The drs are still looking at nerve problems because he has the feeding dysfunction also. We were told that they are going to try to take the vent off of him tomorrow and see how he does. If there is no improvement we are going to have to submit to a tracheostomy. This is scary for me and I am completely unsure how we are going to work our lives around this. I am supposed to start school on the 23rd which is little over a week away. We have a lot of decisions to make and some are going to be hard. The most important thing is Lane and we have to do what is best for him. I have been overwhelmed so much, but we can handle this just as we have handled everything else. A few classes and I will be a trach expert. All i can ask for is prayers that lane is better in the morning when he comes off the vent. I want my baby back so bad. I have not been able to hold him since monday and it is absolutely killing me. Well thats really all I can say for now so I will be back on with more info tomorrow.

still hospitalized.....

Well we are still here at riley. Lane is still on the vent this morning. We are really hoping that he can come off today and get off sedation. They did an mri last night to look at his brain structure but we have not heard the results. Lane's neurosurgeon does not think it has anything to do with his chiari malformation. I'm not sure I posted about that technically so he is a little bit of info on it...
    Arnold Chiari II malformation is a malformation of the brain commonly seen in persons diagnosed with spina bifida. The brain is severly compressed from the spina bifida and is pulled back and down into the vertebrae. This creates a cork of sorts for the brain which leads to hydrocephalus, water on the brain, requiring a shunt. Pressure on the brain stem can cause many neurological problems includng feeding dysfunction, breathing problems, developmental delays, etc.
If the problem is a nuerological problem we are being told lane will most likely have to have a trach...an artificial airway. They do have a surgery for the chiari malformation but it is very high risk. They basically remove part of the top vertebrae of the spine and sometime basically move the brain. I'm so praying for a non neurological answer because neither of these options are roads i want to cross. We should be finding out more info today so i will update as soon as possible. Thanks to you all for the prayers we have been recieving.

prayers, prayers, prayers.....

It looks like lane will be turning four months old at riley hospital. We headed back to the hospital because of the stridor we have been fighting for over a month. He stayed a day in a pediatrics pulmonary unit, but last night he was moved to intensive care. About ten last night they decided it would be best to sedate him and put him on a ventilator, so now my baby that ripped out his vent at 6hrs old and 4lbs is now on the one thing we fought to keep him off of. As much as I hate to see him look like this, so lifeless and helpless, I feel I must admit he is more comfortable. Lane's heartrate is finally down to normal and his stridor is gone, making it very easy for him to breath.....although the machine is breathing for him right now. I hate this whole thing, we have been to 3 different hospitals and they are just now seeing its not croup. He has an IV in his skull right now, but they are going to put a pic line in today. He also goes for an mri at two to see how his brain is laying to rule out the possibility of pressure on his vocal nerve. I really don't know anything more at the moment. All I can ask is for prayers.....tons and tons of prayers. Please help with this small gesture. I love you all.....Danielle

we are home.....

So we made it home from our last hospitalization and lane is doing well. All his tests came back normal so they let us go home! He is still having some respiratiory problems but significantly better than before. Lane is still taking a bottle three times a day. We are going back the 19th and 20th for some more appointments including a swallow study. Lane is now weighing 12lb 13oz. He is falling behind developmentally so i have been trying to get in contact with his therapists. I will try to get some pictures on here soon. O and many many thanks to everyone who participated in Lanes benefit. We really appreciate everyone. Thats all  for now...............:)

3 months......a long awaited update

Hello all, I want to start this post with a huge apology for my few updates in the last few months. Lane turned 3 months old on July 13th and has grown to 11 pounds and 12 ounces. On the 13th and 14th we made a trip to the spina bifida clinic at riley in indy. It was an overall great trip. Lane's bladder and kidneys looked great. He is not holding his head up yet so we have to do some major work in that area.(He is really making big improvements since) We had a swallow study and Lane actually had improved on his aspiration though still aspirating. They decided he can have one ounce of ultra thick formula through a preemie nipple three times a day. All other feeds must be ng. He LOVES his bottle and thinks its quite awful that he only gets one ounce.

While in indy Lane had been very junky sounding and had started a little whistling noise called stridor. His pulmonologist gave him steroids and albuteral to get him over it. Well...he never got over it. The stridor got worse to the point where you could hear him breathing from the other room so we took him to er. They sent us home. Two days later he was still worse so we took him back and they kept him at good samaritan hospital for two days. There he was diagnosed with croup although they wondered about it because it had been lasting for over three weeks. They sent us home on steroids once again. By that afternoon(this past thursday) he was the worse he had ever been so I called and took him to richland memorial in olney. His pediatrician did not think he had croup so we stayed there till sunday and were shipped to riley....

...and so here we are. I'm sitting at a computer at riley hospital( my come to be second(or first) home). Lane is doing much better for some reason but the doctors here want to know what was causing the problems so we have a lot of tests to do until something shows up. He had a bronchoscopy today which is where they run a camera down your throat to look at the structure of the vocal cords. That test came back normal with his floppy airway much improved. So we are now waiting for another sleep study to be scheduled and a gastric emptying test and an upper gi test tomorrow.

They had taken Lanes bottle feeds away but I think we are going to repeat our swallow study tomorrow. Pray that he does well and can go on bottle feeds completely.

Well thats a little bit of new info for all you followers for now. There is gonna be a benefit held in Lanes honor this saturday so we hope to get out of here and attend. I hope you all are having a great summer. Thanks for following....

12 weeks.........

Not really anything new this week. Lane is 10 pounds 14 ounces. We are all doing really well. Roger and I have been so blessed with such a happy, beautiful little boy. Lane smiles, laughs, and coos all the time now. He has really got the hang of rolling from belly to back...though he will not let his grandma mary see!!!! Next week we head to indy for a lot of appointments. We will be going to the spina bifida clinic where we will see neurology, orthopedics, developmental peds, and urology. We also have an appt with lanes pulmonary dr. The two important tests Lane will be having is a renal ultrasound and a swallow study. Please pray that both go well and Lane gets to lose the feeding tube and get a bottle. We really appreciate all the prayers. Extensive update sometime next week...I'm gonna try to update both Tuesday and Wednesday but we shall see as i will be very busy!

11 weeks

Lane is now 11 weeks old and growing steady at about 10 and a half pounds. What a week we have had!!!  First off Lane is doing absoluetely amazing developmentally, he has really started smiling a bunch and he is rolling over for mommy....he wont for anyone else though...lol. He has started cooing a little but is much more content to just sit back and take it all in:) On sunday Lane laughed for the first time. I was talking about him peeing all over me and he started smiling and laughing like he knew what we were talking about....it was way too funny! Sunday was also one of the most stressful days of my life. Sunday morning Lane projectile vomited and choked on it. His heart monitor was going off and he was not breathing. It scared the crap out of me. I took him to the hospital because  I was worried about his shunt. They ran bloodwork and saw his potassium was high. They decided to lifeline him to indy by helicoptor. My heart sank as I watched them load him up and fly away then it was a mad dash to riley in indianapolis.It turned out it was just dehydration and after 24 hours we were allowed to bring him home. So in the end all is well and we are happy and playful again. I will be updating again as we are headed to riley for a ton of appointments in a few weeks. have a great 4th !!!!

9 weeks

Well the last few weeks I have missed my updates as things have been completely uneventful. Lane is now nine weeks old and weighing in at a whopping nine pounds. He is really chunking up!!! He turned two months old just a few days ago and that was a rough day for mom. All is well, still on the feeding tube. We go back to the dr in July. Lane has been battling a cold but I think we are finally getting things under control. Roger and I will be celebrating our one year anniversary on Sunday. What a first year of marriage we have had! Here are the late but promised pictures........

he was just sitting with his paci like this lol

mommys paci baby

in the bath

!!!!!!

sleeping

with daddy

with his great great gran and pampa

my little guy is chunkin up

Lane and mommy

7 weeks

I want to apologize for the late update but i have some news so it's a plus i waited. On tuesday lane turned seven weeks old, wednesday we went to see his pediatrician. Lane is weighing in at eight pounds nine ounces and going strong. he is getting so big!!! i dont know how people have babies this size...he would never have fit! On thursday I met with a developmental therapist and speech therapist. They both said Lane looks amazing and is doing better than they had ever expected. He is on track developmentally and his physical therapist said she will be back in three months but highly doubts we need her until lane is around ten months old. She assured me he will walk and may not even need therapy to do so...just some ankle braces. She said she really thinks he will crawl on his own and no problems sitting! I am so excited at this great news. Lane is really growing into his red headed temper. I thought his hair would turn blonde but so far it is still a bright red! He has become fascinated with my face and always has ahold of my shirt or necklace. His pulmonary doctor called yesterday and said that his last sleep study was just now read and Lane has no sleep apnea no more which means he can come off his monitor but I have still put it on him at night as I sleep better knowing he is breathing..... July thirteenth and fourteenth we will be headed back to indy to see a ton of doctors including our first visit to the spina bifida clinic and another  swallow study. Well thats all I have for an update now....i promise i will add more pics just have to find time.

six weeks....

Lane has made it to the six week mark!!!! I meet today with joy for my miracle baby and sadness that time is flying by so fast. Looking back on the past six weeks my life has been full of smiles, laughter, hugs, kisses, and sadness, tears, and depression. We have brought our beautiful baby into this world, then told we only had at most six months with him here on earth. Lane has defied all odds and proved so many doctors wrong. From not having trisomy thirteen to kicking his little legs in a fit a rage, he has proved himself stronger than any of us could ever be. As I look over at him now tears come to my eyes at just how precious he truly is. A true angel sent to me straight from God. I count myself lucky to be the reciever of such an amazing gift. I'm not sure yet why we have been through our trials and tribulations, but I know there is a reason far beyond me and I will know someday just what God had planned. It has been a roller coaster ride and one I would gladly take again. In the past six weeks we have been on the recieving end of love, prayers, and generositiy. I want to thank anyone who helped us in anyway, be it a small prayer, a kind smile, or a contribution. Lane has grown so much from the tiny, sick little four pound twelve ounce baby boy to the seven and a half pound happy little guy he is now. He smiles and has a personality completely his own and he always makes his mama smile even when he is mad and kicking everywhere. If he only knew that  I live to see those litttle legs move:) He has started grabbing anything his little hands get a hold of, especially mommys hair.
  Last week with my quick update I came to realize that our trials are far from over. I went to Indy on thursday and friday with my mom truly expecting to be told my son was normal and needed no special interventions anymore. I was sadly mistaken and it hit me really hard. As mentioned in the last post he has serious sleep apnea, his back wasn't healing as well as the doctor wanted, and he is aspirating formula into his lungs when bottle fed. By the time I was headed back  I was feeling really down and depressed. Friday reminded me of the serenity prayer. I said this prayer constantly from the time I found out I was carrying a baby with spina bifida to the time I brought our baby home. For those who don't know it, here it is, it's my lifesaver and reminder I am not the one in control of my life...God is.
God grant me serenity to accept the things I cannot change,
courage to change the things I can, and
wisdom to know the difference.

I want to ask you all to say a prayer for a family I was in the hospital with. After several miscarriages she finally became pregnant with twins and made it past her first trimester. At sixteen or seventeen weeks her water broke on the baby boy. She stayed in the hospital for eleven weeks, and bedrest a total of eighteen weeks when she finally had the twins. The girl is doing good but the boy passed away last week due to complications of underdeveloped lungs. They are in my thoughts and prayers and hopefully yours too.

Well I'm going to end this post now and put some pictures up later this week. May God bless you all.....

dr.....

well the dr appts on thursday and friday could have went better than they did. thursday Lane had a sleep study and that was just awful. they put tons of wires on him and he hated it. you could only see his mouth. that was a really hard three hour test for both of us. friday we found out he still has a lot of apnea. his apnea score was in the twenties and it was suppose to be less than five. his neurosurgeon doesnt think his back is healing fast enough so we have to put medicine on it now. he had a swallow study and that was so so. he still cant have a bottle because he is swallowing but getting a baby bit in his lungs. we go back in eight weeks for that test. it was a disappointing trip but hopefully next time will be better.  he is growing good weighing seven and a half pounds now. well thats just a baby update for now but i will do a tuesday update with more info
!!!!

Growing....

Wow I can almost cry thinking my little guy is already five weeks old today. The last few weeks have flown by way to fast. This week has been full of progress. I got registered to start back at school in August. I am so excited...I really love school. We have almost finished our trailer and are waiting for the electric company to move in. Lane is doing absolutely AMAZING. He makes little changes everyday it seems. He has started grabbing hold of everything his tiny fingers touch...including his feeding tube! He also is focusing on stuff a lot better than he had been. He really likes his grandpa Rogers big screen TV. He rolled from his side all the way to his belly the other day..it's not a complete roll but it counts for something!    It is amazing to watch his little legs kick when he is throwing a fit. Most parents feel exasperated in the middle of those big fits, and part of me does too, but I am amazed at my little boy for kicking and reacting to whatever it is making him mad. I love how much he has proved all the doctors wrong. I am so happy he is developing on time since they thought his brain was underdeveloped. He is doing so good and is truly a little miracle in every way. I take him everywhere now so I can show him off! LOL! On Thursday and Friday we are headed to Indy for a ton of doctor appointments and tests. The two big ones are the sleep and swallow study. The sleep study will tell us if he can come off the apnea monitor and the swallow study tests if he can bottle feed. We are praying so much he passes both and gets off his feeding tube this week. Please say a prayer for good results. Thanks and God Bless you all!

sleeping

he sleeps with his hands by his face

wide awake