Eye exam

Layne went to the Opthamologist on Monday. We didn't get much news other than what we already know..that Layne has CVI and his brain cannot process what he sees. He said we can hope that it will get better with age. He also said that glasses would never be an option...bummer:( But we hope and pray that it will get better as he gets older because that is very possible:)

Update 12/27/08

Hello! Hope everyone had a good Christmas!! We did! Layne got lots of good stuff!

Layne hasn't been in a very good mood lately. This comes as no surprise though. He has been really fussy and not eating well. He refuses to eat formula, so now all I can get him to eat is baby food. He likes to drink his flavored water, he isn't allowed to have much else on the diet. He still weighs 14lbs 3ozs. Sometimes that goes down to 14lbs 2 or 2.5ozs. I sure hope he keeps gaining!

He is trying to roll over again at times, but his arm gets in the way(I am including a video of that!). He is still working on his first tooth, it is sooo slow at coming in! But I guess it's like everything else for him, SLOW!! I guess that's about it! Watch the video, its so cute!

Kidney Stone

Hello everyone! We just recently found out that Layne has a small kidney stone in his left kidney. There is no signs of it trying to pass yet so that is good. We will be seeing the Nephrologist in the near future for that.

In better news Layne is 14lbs 3ozs! Last week he was 13lbs 10ozs! He is pretty much sleeping through the night! And he seems to be getting some of his strength back!!!!

Update!!

Hi everyone! Layne has been much better the past couple of days. We just changed some of his diet. He now gets 4 meals and 4 bottles a day. His formula has been changed from 2o calories per ounce to 30!! We hope to see a little fat piling on soon!! Also he has been sleeping better, his pediatrician put him on some medicine to help that.

His Neurologist saw him yesterday and she informed us that we need to start teaching him to fall asleep on his own. So we started trying this today and so far for both naps it has worked. Once we notice that he is really tired we just go put him on his tummy in his OWN bed and he falls asleep!!! He has to have his glow seahorse(like a glow worm) to help him out a little!!

Layne has also showed the beginnings of babbling, not like a normal child would but he does it in his own way, I will get a video of it as soon as I can!! I added a pic of Layne and his Daddy!

15 Months Old!!

Today Layne is 15 months old! My how time flies!!! He is still having seizures daily, about 100 or so. He is back down to 13lbs 9ozs...so that's a bummer since we thought he was gaining again:( He has his 15 month check-up tomorrow, a visit with the Neurologist on the 15th and the long awaited visit with the opthamologist on the 29th. That's all I can think of to update at this time, my memory is awful these days...haha!

Layne Talking

Layne has recently learned a new sound that he would like to share with everyone!!!!

14lbs!!!!!

When I weighed Layne this morning he was 14lbs!! I couldn't believe it!!! He also made a mess of the cotton balls again!!!

Layne's first mess!!!

Layne made his first mess today!!! I am so excited!! I put him on the changing table to change him and then left him there while I went to brush my teeth(don't worry he will not fall off, lol). When I came back he had gotten cotton balls everywhere!!! I practically jumped up and down, lol. It's funny how something like this can make a mother so proud!! Anyways here are the pics!!

Layne's new cousin!!

Last Thursday night (nov 2oth) Layne got a new little cousin!! Her name is Ella and she weighed 7lbs 4ozs and was 19.5 inches long!! She is so cute!! The hospital rules didn't allow Layne in the room so I couldn't get a pic of them together:( But here is a pic of her!!

Layne playing with a rattle!

Here is a short video of Layne playing with a rattle. I have been able to lay him down and put it in his hand to buy a little bit of time, not much, but a little.

Just an update!

Layne has been doing OK. He is still having seizures and is still as fussy as ever. He is hardly sleeping and man it is taking a toll. My back feels as though it's going to break in half! I have been trying to wear a back brace when I can. It seems to help a little. But seeing his cute little face is all worth it!!!

We are so thankful to have such wonderful church friends!! They have done so much and we can't express enough how grateful we are for them! Many people have pulled together not only in prayer but also bringing us food. That eliminates the worry of what to cook for dinner!! Since Layne didn't get his RSV shot we haven't been able to attend, which really stinks.

Layne seems to be getting better head control, and he certainly enjoys swimming alot! He moves around so much in the water that it's hard to believe he can't do much on the floor! Hopefully after more time he will be able to do more!!

More Swimming!!!

Here is a new video of Layne swimming, he is a little more active!!

I Am Blessed!

I sometimes feel like I am surrounded by tons of healthy babies, I guess because so many people are having babies these days. Sometimes I think, wow they are so blessed to have a healthy child and not feel the hurt I feel everyday. But you know what, I am just as blessed as any of them because Layne has taught me so much more than a "normal" child could have. Layne has taught me to love more, he has taught me the value of life, and most of all he has taught me not to take the smallest things in life for granted.

Because of Layne, my life will never be the same. He requires constant care, and he takes all I can give. I have no time to think about myself. He has truly taught me to be selfless. I will never take his precious smile for granted, not ever. And he is crying now, he just woke up...so I gotta go get him!!

Epilepsy Awareness

Dear Friends,November is Epilepsy Awareness Month and we need your help! As you know, we're asking all Americans to sign our epilepsy petition (www.epilepsypetition.com).

Our goal is to collect 100,000 signatures by December 31, 2008 to present to our elected leaders. That would definitely send a message! So far, we've collected 10,000 signatures online.

If everyone that signed our online petition collected just 10 signatures, we'd reach our goal! Will you take a few minutes and collect 10 signatures in the next couple weeks and help us reach this amazing goal?Collecting signatures is a great way to raise epilepsy awareness.

The more we talk about epilepsy, the more we educate the public. So come on! This isn't going to happen by itself! We need to make it happen! Collect some signatures and help us make a difference!You can obtain a copy of the petition by clicking here .

If you have questions, comments or want to get more involved please contact me at the email address below. Many thanks for your support!

JoeJoseph
LaMountainDirector of Grassroots Advocacy
Epilepsy Foundation
8301 Professional PlaceLandover, MD 20785
jlamountain@efa.org

Heaven's Very Special Child

HEAVEN'S VERY SPECIAL CHILD
A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents
whoWill do a special job for you.

They will not realize right away
The leading role they're asked to play
,But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.

by Edna MassionillaDecember 1981The Optomist- newsletter for PROUDParents Regional Outreach for Understanding Down's Inc.

Happy 14 month birthday Layne!!

Layne is 14 months old today! Can you believe it? Time goes by fast! Here is a little speech from the man himself! Enjoy!

Sign the petition!

Preemie Awareness Month

November is Preemie Awareness Month, so do what you can to spread the word! Make sure you do what you can to help all women get the 9 months of pregnancy they deserve for their babies! If you know someone who is pregnant encourage them to be healthy for their baby!

• Nearly half a million babies (or 12% of births) are born
prematurely every year.
• Premature birth is the number one killer of newborns.
• Preemie babies tend to face lifelong disabilities and
health difficulties such as cerebral palsy, mental
retardation, and chronic lung disease.
• Hospital charges for infants born pre-term average
$75,000, while health care for a healthy baby costs
approximately $2,900.
• Premature births are on the upswing across the nation

I myself have a baby who was born premature. He will face challenges his entire life because he was born too early. Having a premature baby is one of the most emotional and trying times I have ever been through in my life...and it's not over yet. We still face many many challenges to come for Layne. Here is a picture of him when he was born...

Update 11.5.08

Hello everyone! Just wanted to give everyone a quick update! Layne is doing pretty good. He is still working on his first tooth. It seems like it is taking forever to come all the way in! He is still having seizures there has been no change with that. He continues to improve with therapy. We have been wanting him to bear weight on his arms and he has begun to do so! His head control also continues to improve! We are still having him "swim" everyday and are hoping that he will get stronger and stronger from it. His weight this morning was 13lbs 12ozs! Here are some recent pics....

Halloween!

We weren't going to take Layne trick or treating but kinda changed our minds and went by a few houses. He got a little bit of candy, of course I will be the one eating it but oh well. Here is a pic of him in his costume.

Halloween Party!!!!

Layne also had his Ketogenic Halloween party on Tuesday! It was pretty fun! He didn't get to wear his costume for long because it was too hot for him. We got to meet lots of other Keto-kids so that was neat. We also got to meet Dr. Said's husband and children, who call Layne "Baby Layne"!! Layne's doctors dressed up as Sonny and Cher!!! Dr. Said was Cher. Here are some pics....

One is a group pic of us, Layne's dietitian, Mary Susan and Dr.Said.

Dr Appt

Layne had an appointment on Tuesday with his Neurologist, Dr. Said. It went well and everything seems to be ok. Layne is still having seizures but they are still so mild they are almost unnoticeable. And they don't seem to affect him at all. It's always good to hear a good report! He goes back in December and he will also be going to the opthamologist in December as well, we are anxious for that appt!

Layne Swimming!

Finally a video!

More Water Fun!

Layne had alot of fun again today in the water!! I wanted to share some more pics!!

Water Way Babies!

We got Layne a water therapy pool, called Water Way Babies, and he absolutely loves it!! He does so good too! He will hop off the bottom and kick of the sides, and swim from side to side. It is so neat to see him doing something like this!! It was like he knew what to do!! It is supposed to help him gain strength, especially neck and trunk strength which he REALLY needs!! I cannot wait to see the progress he makes!! I tried to take a video but the lighting in the bathroom is too dark, but we are working on that, it's too cute not to show everyone. But I did take some pictures!!

If Layne had hair....

If Layne had any hair maybe just maybe he would look like this.....

Getting a tooth...FINALLY!!

Layne is finally getting a tooth!!! You can't see it well enough to take a picture but as soon as it pops all the way out I will post a picture of it!!!! We are so excited! I think he is going to be so cute. And it looks like he might have another one start to pop up next to this one soon!!

Jammin' to Daddy's new song!

So I have just recently figured out that the camera we have had for 3 yrs takes videos!!! So I recorded a little video of him listening to his Daddy play music, which he loves!!!

Give me that spoon!!

Layne has figured out he can take the spoon away from you when you are feeding him!! He likes to take it away and chew on it!!!

Pumpkin boy!

I got to put Layne in his little Halloween outfit the yesterday. I thought it was supposed to be cool outside but it ended up being hot! Anyways I thought he looked too cute in it!!

Spitting Food!

Layne has learned to spit his food!!! I just love it, even though he makes the biggest mess! I'm proud of it, haha!!! Can you see all the splatters!

Update 10/11/08

Layne is doing so much better!! He is eating much much better and acting more like himself!! He has even gained some weight. He weighed 13lbs 11ozs this morning!! We had to increase his Bicitra the other day and that always helps him perk up!! He has also started rolling over again, that always means he is feeling good!

Oh the lovely ER!

Yesterday afternoon we had to make a trip to the ER because Layne was dehydrated. Oh what fun. Poor little guy got stuck about 5 different times. They put the first IV in and it was messed up so they had to redo it. Then he got his blood drawn. Then after they had taken the IV out because they thought he had enough fluids, the doctor decided that based on the way the labs looked that he need more fluids sooooo they had to put another IV in...stuck him once and couldn't get the vein so they had to do it again. Poor little guy. He still isn't eating well at all. I wish I knew what to do for him :(

A day in the life of Layne...oh what fun....

Petition for Preemies!

Follow this link to help babies born premature!!! Just sign and then share with your friends!

http://www.marchofdimes.com/padpetit...px?a=1&z=1&c=1

13 Months Old!!!

Today is Layne's 13 month birthday!!! I can hardly believe it! It's a happy but sad time for us. Happy because he has made it this far and sad because he is only at the level of maybe a 3 month old. I wish I could get on here and write all kinds of neat new things he has discovered or is doing but I just can't. I am very happy for the progress he has made but as any mother would, I hope for more. Anyways here are some cute pics

I took of him today!!!

Layne's birth size doll

About a week ago we got Layne's birth size doll in the mail. I found a lady who makes these dolls and had to order one! Its so hard to try and explain how small he really was and this doll helps others to see his tiny birth size.

Old Rip

Yesterday was the anual "Old Rip Fest" and this year was Layne's first time to go. Last year he was in the hospital! It was pretty fun but a little too hot so we didn't stay to long. Layne didn't have much fun because he was fussing during the parade but once we put him in his stroller he fell asleep. While he was sleeping we went to get some food and then left.

Sippy Cup

We got Layne a sippy cup to try and get him to drink flavored water(he cannot have juice because he is on the ketogenic diet). He can hold the cup for a few seconds himself but I have to help him drink it! He must think the water is a little funny tasting because of the faces he makes!!

Update

Hey everyone! Layne has been doing pretty good. He is still having seizures but despite that has continued to make some important developmental steps! He is starting to gain really good head control and is rolling over from tummy to back!! He is gaining a little bit of weight and now weighs 13lbs 8ozs!! He is also 26 in long!! He is becoming much more vocal as well!

Hello!

Hey everyone! I have decided to start this blog so we can keep in touch with other families with children that have IS and other issues. As well as keeping my friends and family updated!!