How's Layne Doing Lately?

Layne has been doing pretty well lately! He is doing good in school and has managed to skip any illnesses so far! Even missing out on a couple that little sister Lexi has had! I hope I'm not speaking too soon, but it's something worth praise!

He is currently weighing 24lbs, so there could definitely be improvement there, and we are definitely working on it! He is 35 inches tall. Hopefully he will start gaining weight with the small formula changes we are making so that we do not have to resort to a G-J tube.

I'm not sure if anyone remembers, but Layne used to scream in the car, and I mean scream! Now he loves riding in the car and rarely ever cries!

He has recently been referred to physical medicine and rehabilitation at Children's so we are looking forward to that appointment in December to make sure everything is doing ok in that area. I hope nothing is too horribly wrong. There has been discussion of possible botox treatment for his tight leg muscles.

We are looking forward to Halloween, even though Layne can't eat candy, we enjoy dressing him up and this year he is going to be a pirate!!

Layne is sleeping pretty well and occasionally sleeps all night in his bed without waking! But most nights he wakes up and we have to put him back to sleep.

He is enjoying playing with a variety of toys, including his Ipad!

I guess that's about all I can think of for now, thanks for checking in on him!

A Special Needs First Day

When you have a special needs child, the first day of school is quite a bit different.

You pack your child's backpack with paper, pencils and crayons.
I pack Layne's with diapers, wipes, clothes and bags for vomiting.
You hope your child will make friends.
I hope Layne can make it there for 1.5 hours without getting too upset.
Your child might be scared, but you can explain to them what's going on.
I cannot explain to Layne that he's going to be ok.
You may worry that your child might get sick this school season.
I worry that if Layne gets sick, he may not recover.
You register your child for school.
I have to have an ARD meeting for everything involved with Layne.
You walk your child in by the hand.
I push Layne into school in a wheelchair.
Your child knows what school is, and is ready to learn.
I hope that Layne understands that I have not "left him".

There are many differences in our children, but it's a big day for everyone! I hope everybody had a great first day!!

Here is Layne on his first day! He did pretty good, but he did cry some of the time. Hopefully he can get used to the routine very soon!!

Catch Up Post!

 

Ok, so it has been entirely too long since I have blogged! Here is the lastest on Layne:

Layne is nearly 24lbs!! He is really growing and he is now 34 inches long!

About a month ago, a very nice family donated a hospital type bed to Layne. He isn't sleeping in it too good yet. Most nights he only sleeps in it until around midnight. But were working on it.

School is out for the summer and I think Layne is ok with that for now. He really loves school though.

A couple of weeks ago Layne had his sleep study and I just heard back today that he does not have sleep apnea and the EEG part of the test showed no epileptic activity!! That was excellent news! This is Layne during the test.

We have been swimming a few times so far this summer and Layne absolutely loves it!!

Here is a picture of Layne and Lexi playing in his bed.

Layne saying "night night dada"

Easter 2011

I hope everyone had a great Easter weekend! We did!! Here are some pics!!

Stroll for Epilepsy and Sick Again

 Saturday was the Stroll for Epilepsy! Layne's Rockin' Walkers raised $530.00 for the Epilepsy Foundation!! Unfortunately Layne started to get sick at the stroll and ended up in the ER. You may remember that he did that the first time we participated in the stroll also. The doctors at the ER didn't find anything wrong so they sent us home with a diagnosis of dehydration (yeah because dehydration always causes a 103.6 temperature). So we went home with a sick little boy.

My instinct was that there was more to the story so we took him to his awesome pediatrician on Monday, only to find out he had strep throat AGAIN!  I really hope this is the last illness for a while. The little guy can't catch a break!!

Movie Star!

Saturday, Layne made his filming debut with the creator
of the Water Way Babies system! She is making a  documentary of babies and kids who use it and Layne  got to do it too!! He had a lot of fun swimming!

School Progress!

Layne is doing really awesome at school now! He doesn't cry and he lets his teachers and aids move him all around and do what they need with him! He isn't being held for comfort anymore which is the biggest improvement of all! I never thought school would be like this for him, but he seems to really love it!!

New Formula

Layne has been on the new formula for 2 days now. And I'm not excited to report that he is still vomiting. I'm not sure if it is because of the formula or the fact that he is some what constipated. I just hope he can tolerate it better soon, because I'm really scared to have to switch his tube to a G-J tube. I am afraid he will feel hungry because he would not be fed in his stomach anymore.

Sick Again

Since starting school Layne has been sick at least 6-8 times. Mostly colds and 1 round of strep. He is now sick AGAIN!! I am so sick of him being sick, it's really just not fair to the little guy!! This time appears to be just another cold of some sort. He is coughing alot,  has a low temp and at times some labored breathing. Oh and of course vomiting, the poor guy can never get ahead because every time he is sick, he vomits a ton. I am ready for spring so hopefully the sickness will end!!!

Changes

Layne had his GI appointment Wednesday, and because he is not gaining any weight, they want to change his formula. So he will be changing from Nutren Junior to Peptamen Junior. I am really hoping this helps, I don't know of many 20lb 3 1/2 yr olds!!!

Happy Valentine's Day!!

Here are some pics of Layne at his school party, and some of him and Lexi at home!

Layne checking out his valentine's!

                                                                       Pretty Smile!

                                                           Lexi's first Valentine's Day!

                                                               The card he made us!

                                                                    He's so sweet!

2 Years of Seizure Freedom!

 Today, Layne is 2 YEARS SEIZURE FREE! This is the biggest miracle for us! I never thought that we would be so lucky for Layne to become seizure free. Because unfortunately, most kids with Infantile Spasms don't. It instantly brings tears to my eyes thinking about how wonderful this is!

I want to thank all of you who pray for Layne. I believe the power of prayer helped tremendously in helping Layne become seizure free, and ultimately I thank God for this miracle!

I am so thankful I don't have to hold Layne and comfort him through hundreds of seizures daily anymore, crying because I wasn't sure if he would make it through them. And now that he has been without seizures, he can learn and improve and continue to develop in ways he never could have with constant seizure interruptions.

And to those of you who follow Layne's blog and have children who are still struggling with seizures, I am praying for you and think!ing of you all the time. I know how it is to read other's success stories and it isn't any fun. I love all you guys and I hope your miracles come very soon

And just because, here is a picture of Layne playing with Lyla!

Snow Day!!

Layne in the snow for his very first time ever!!!

Tonsillitis

Poor little Layne has had tonsillitis since Thursday. He is finally starting to maybe feel better today. We have not gotten much sleep around here because he coughs so much it keeps him up. Hopefully he will be back to normal soon!!

Here is a picture of him enjoying his swing!

Stroll for Epilepsy

This year's stroll is April 9th, 2011 at the Dallas Zoo! Here is the link to Layne's team, Layne's Rockin' Walkers, if you want to join or donate!!

http://eftx.donordrive.com/index.cfm?fuseaction=donorDrive.team&eventID=520&teamID=5242

We had a lot of fun the first year we did the walk, and couldn't participate last year because I was way pregnant and on bed rest at the time. We are looking forward to it this year!!

Cyclic Vomiting Syndrome

Layne had a GI appointment yesterday. We explained to him the unusual pattern of vomiting that Layne has. He will vomit for 2 weeks sometimes and then be fine for 2 weeks to a month. It's the weirdest thing. So his doctor believes he has what is called cyclic vomiting syndrome. He has been prescribed Zofran to help when he has an episode. I'm really hoping this will help, because Layne is still a tiny 20lbs 7ozs, at 3 1/2 years old. We also have to squeeze in another feeding during the day, to try to "beef him up" as his doctor said, ha!

The past few appointments Layne has been to, he has had high blood pressure readings. Yesterday it was 133/83. I am concerned about this and so are the doctors. We will be seeing his nephrologist on Monday, so I'm going to ask him what to do about it.