Father's Day = Hospital Stay

Layne woke up on father's day starting a full blown vomiting episode. Diastat did not do the trick after 2 doses so I left work and we headed to the ER. Layne has been admitted and has had an awful time so far. He has basically been crying the entire time with the exception of the few hours he has managed to get some sleep. He's on round the clock phenergan, zofran, tylenol and ativan to try and help get him over this episode. I expect we will be here for a few more days.

Another CVS Episode

Layne had another vomiting episode tonight. He made it 11 days since the last one he had. He vomited 4-5 times within an hour or so and therefore required diastat to stop it. I'm not sure of the trigger this time, but it probably had to do with the higher humidity today. I'm just thankful the diastat stopped it and we did not have to go to the hospital! I still hate it though, that he has to go through it so many times.

I'm Back!

I've decided to start blogging again! It's probably really for myself, kind of like therapy, and also so I can record all the things that are going on with Layne.

It has been much too long since I last posted! I'm not even sure where to begin on what's been going on in Layne's life. The past two years he has really been struggling with cyclic vomiting syndrome. As of now he has an episode every 7-10 days and it is awful. However, since he started getting severe attacks in August of 2012 and was hospitalized many times, we have mostly been able to control each episode at home using Diastat.

Layne has had minimal seizures the past couple of years which is wonderful! His vision is also improving but will never be normal vision. He still loves riding in the car and his absolute favorite place to go is wal-mart, or really any shopping place, but our small town doesn't have much. He literally says "in the car" about 100 times a day, along with "dad", "dada", and "daddy", but no mommy :(

He has even lost two teeth (And we recently found out he has an extra tooth in the roof of his mouth)! He is still quite small, only weighing 29lbs, and he is now 41 inches.

And, just in case anyone doesn't know Layne's story, I'll do a quick recap now! Layne was born prematurely at 30 weeks 3 days after my water broke early at 28 weeks. He weighed only 2lbs 14ozs. He stayed in the hospital for 7 weeks before we could bring him home. Layne has many complications due to his premature birth, these include: Periventricular Leukomalacia (PVL-damage of the white matter around the ventricles of the brain), Cortical Visual Impairment (CVI-eyes are perfect, but not the nerves from the eyes to the brain, causes messed up signals from the eyes to brain), Failure to thrive (FTT-cannot eat enough on his own to survive), Cerebral Palsy, Hip Dysplasia, Cyclic Vomiting Syndrome (CVS-periods of vomiting followed by periods of no vomiting in cycles), Developmental Delay, Symptomatic Torsion Dystonia, Epilepsy, and I think that's it!

I hope you will all keep up with Layne and I hope I will be a frequent blogger!

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"