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.