Swimming!!!

Yesterday and today we took Layne swimming in his first real pool!! He loved it so much!! I have pictures and video from today because yesterday the batteries died in my camera, go figure! The video isn't long because I ran out of memory! Pappy and Mimi took pictures yesterday but I don't have them yet so I will just share the ones I took today. I want to take him swimming everyday because he loved it sooooo much! He swam for around 45 minutes each time, I'm sure he gets very tired since it is probably quite the work out for him!

I also wanted to share this picture of Layne petting the kitty!!!!

Reglan-YIKES!

We started Layne back on Reglan on Tuesday of this week(He came home from the NICU on it). I was previously convinced that it made him more fussy and irritated and trying it again confirmed that suspicion. Tuesday night he only slept for 30 minutes(6-6:30 am) and was up crying all night. I had to walk around the house pretty much the whole time. Then on Wednesday he wouldn't nap and was constantly crying. So I decided to e-mail the doctor to tell her I didn't think I wanted to give him Reglan anymore, she agreed!

I was once on Reglan while breastfeeding because it can increase milk supply, and while it did just that it made me a complete nightmare! I was crying all the time and very agitated!! But now that Layne is off again, we had plenty of sleep on Wednesday night and last night and he is napping normally now! Phew....I thought I was gonna go crazy!!!!!!

Neurology Appointment=Good News!

We went to Layne's neuro appointment today and we learned that the EEG has IMPROVED! I have definitely learned my lesson not to pay attention to things I don't understand, haha! Even though on the screen it looked the same as always it was indeed different. His neuro explained that she studied 7 days a week for 2 years to be able to read EEG's and that we should pay no attention to that stupid screen!!

So anyways I'm sure you want to hear the news! The results: They are starting to see a more normal background pattern of his brain waves. He NO LONGER has hypsarrhythmia!!! Before on his EEG's they couldn't tell the difference from when he was awake and when he was asleep and other things like that and now they can!!!!! He does still have abnormal discharges coming from the back of his brain, which means there is potential for seizures but that doesn't mean he will have any. I asked what the back part of the brain controls and it is vision, so that explains alot. The back part of his brain has always looked the worse, wave wise. So overall it was good news! It's been a while since we've heard something that positive!

We are going to start a 28 week wean off the phenobarb too! I am excited about that because I have heard that helps improve development when they come off of it!

We also talked about the vomiting issue. We are going to try some meds for motility and run his feeds over an hour instead of over 30 minutes and see if that helps. I hope so because I feel bad for him when he is vomiting everyday:(

He still seems to be bothered by his ear infection. He hasn't been himself the past couple of days. He had a 101.7 temp when we got back from the doctor today. If he doesn't seem better by the morning we will be taking him to his PCP.

What would a post be without a pic? Here is one I took the other day of him swinging!

Ear Infection

Layne started not feeling too well on Thursday of last week. We ended up taking him to his PCP on Saturday morning and he has an ear infection. So he is on antibiotics now and starting to feel better! I have included a video of me cheering him up with a funny(very embarrassing) sound that he seems to like a lot. He even giggles a little(around 19 secs into the video). Please, please ignore me as I look like I am trying to throw up all over him!

Layne's neurology appointment was moved to tomorrow. I am glad about that since we will know what the EEG results were a week sooner than expected!! Also he will see the dietitian and hopefully we can work on some new medications for the vomiting! It is getting out of control and I can hardly stand it anymore! I will be sure to update how the appointment goes tomorrow!

A Much Needed Venting Session

First of all let me just say this...I do not want pity or sympathy, I just want to get my feelings out and this is the best way I know how.

My heart is broken.

I am depressed.

My eyes are red and puffy from all the crying.

Why? Because my son is developmentally delayed.

When you plan to have a child, you don't expect bad things to happen, like your water breaking at 28 weeks. I remember that day very vividly, I was terrified. At this point though it's not the prematurity that was the hard part, it's the life long damages Layne has suffered.

Everyone has hopes and dreams for their children. I love spongebob and I always knew that my child would love spongebob just as much as me. I imagined us cuddled up on the couch watching it together. I hate that Layne will never know what spongebob is, in fact he'll never even know what he looks like. I don't even watch spongebob anymore because it is a sad reminder of those dreams.

We live in an apartment complex with lots of little kids, and because it is summer time they are running around playing everywhere. Lately I've been finding it extremely difficult not to get upset while I sit outside and see them playing. Please understand that I do not wish this on any person in the world, I just wish that my child was healthy enough to run and play and see the world. It's heartbreaking for me to know that will never happen.

It's heartbreaking to see parents who don't appreciate the healthy children they have been given.

Going through something like this is very difficult. But the hardest part about it all is feeling like your in it all alone. I truly feel like no one wants to hear about my problems, no one wants to be around someone who is feeling down all the time. No one ever says, "hey how are you feeling" or "are you handling this ok"(with the exception of some wonderful church members). And let me tell you what that answer is, I'M NOT OK. I just want to scream it, I'M JUST NOT OK. It's harder when you and your husband both feel the exact same way and have no idea what to say to each other.

I've been told that i'm so strong, and guess what I'm not. Or if I am I certainly don't see it.

I realize that everyone in this world has problems. I also realize that many others have it much worse than we do. BUT THAT DOES NOT MEAN I CAN'T BE SAD, OR CRY ABOUT IT. Because I have EVERY right to be sad and cry. Just like anyone else who has a problem they want to cry about. I am human, and I have feelings just like anyone else.

I am lonely too. No one comes by or calls, I don't really have many friends. And maybe I've pushed people away, I don't know, if I have I am truly sorry, it was unintentional. But it's hard when you've got no one to talk to, because you just keep it bottled up inside, until you go crazy and write a blog like this one! Like my preacher said, you can be in a room full of people but be the loneliest person in the room, and that's exactly right. If Layne were ok, I could go visit anyone, but he's not and I can't. I wish we could just hop in the car and go, but that's not the case. Instead of driving through McDonald's for a happy meal on the way to a friends, we would have to bring a suitcase for everything Layne needs. Plus the fact that he screams in the car and cries all the time, so I'm sure no one wants that around.

And let me just say. I love Layne with all my heart and if this had never happened to him, I wouldn't be the person I am today. I would be like any other mother who occasionally took their healthy kids for granted. But it's hard to see his cute little face everyday and think about how cute he would be if he could only run around and get into trouble. And to top that off I have dreams about it often, only to wake up heartbroken. It just plain stinks.

And I know that everything happens for a reason, and as my preacher said it will get easier. But sometimes I just want those easier days to be here already. And I will keep holding onto that hope. I know there is a purpose for all of this, and someday I hope to help someone in the same situation. Layne is a blessing, a blessing straight from the Lord, and I will never take one single accomplishment for granted, you can count on that.

If you have made it this far, thanks for taking the time to read this. Sorry for this crazy post, but I just really hoped that the EEG looked better. There's no correcting developmental delay, and that's a hard thing to accept.

I LOVE YOU WITH ALL MY HEART LAYNE!

EEG, 21 Months and Fever

This morning we went for Layne's EEG. Here is Layne on the way out!


Here they are measuring his head.



Now making the marks for the leads, by this time he was crying because he doesn't like to be touched by unfamiliar people:(

Placing the leads, he was screaming but you can't tell in this photo.
Wrapping his head up so everything stays in place.
Oh and did you notice by this time he has different clothes on? That's because right as we were checking in, he vomited all over his daddy, who had to go down to the gift shop for another shirt.
The next photo is what we saw on the screen. This doesn't look any different than the past ones I have seen, which doesn't mean anything really. It doesn't mean he is having seizures, he just has a brain pattern of someone with a seizure disorder. It looks pretty crazy huh?
We had to snap this photo with a cell phone while the tech stepped out, we weren't really sure if it was allowed haha!
Here is Layne on the way home, poor little guy, he was pooped!
When we got home I checked Layne's temp because he had felt warm all day to me and it was 101.6. He hasn't been keeping anything down today either. I'm not really sure what's going on but if the fever is still present tomorrow we will take him to his PCP.
Today is also Layne's 21 month birthday! I can't not believe in just 3 short months he will be 2! I wanted to share a picture of him with his doll that was the size he was at birth!
At birth he was 2lbs 14ozs and 15in long. His head was 10.75in and his chest was 9in. Now he weighs 16lbs 10ozs and is 29.5in long. His head is around 17in now. He is below the 5th percentile in all areas. He is about the weight of a 4-5 month old and the length of a 9-10 month old. Tiny....
I also wanted to share this photo...
For some reason mosquito bites give him bruises:(

4 Months Seizure Free!!

Today marks 4 months that Layne has been seizure free!!!!! Praise God for this miracle!! Tomorrow he goes for an EEG, although we probably won't know anything until he sees the neurologist on the 29th. But I will be sneaking peeks at the screen to see if it looks any different than the previous ones we've seen(which looks like scribbling all over the screen).

Please pray that his brain has calmed down and has a less chaotic wave pattern!

Mosquito Bite?

Yesterday morning during therapy, we noticed that Layne's finger was all red and swollen. I made and appointment with his pediatrician who decided it was most likely a mosquito bite. It would make sense because we were outside the night before and the mosquitoes were everywhere! Here is what his finger looked like.
We were outside again last night and he managed to get 2 more bites, one on his neck and one on his leg, but they didn't seem to get as big.

Have you been wondering what the kitties are up to? Alot of this.....

Moms of SNC

Moms of SNC (Special Needs Children):….some reflections and even a little humor….

You know you have a special needs kid when….
-the pediatrician insists you call her by her first name.
-your kid’s accordian medical file is 4 feet thick.
-you feel you’re constantly in survival mode.
-your medical deductible is met by mid-January.
-you go for a highly specialized procedure (e.g., a colonoscopy, an EEG, an MRI), and the tech states “you look so familiar; have you been here before?”
-you loathe the “developmental milestones” checklist at the pediatric “well baby” (HA!) visits.
-“friends” don’t ask you to watch their kids because they fear you’ll ask them to return the favor.
-your child is 18 mos. old and you long to have a book barbeque with your copies of “What to Expect: the Toddler Years” and “What to Expect: the Preschool Years”.
-you feel yourself stifling laughter when others complain about their child’s “tragic” ear infection or (gasp!), their ordeal with immunizations or a blood draw.
-you find yourself resenting any therapist's criticism of your little one's mannerisms ("fix your legs!" "don't rub your head!" "don't flap, just give a clap!").
-your mail carrier must think your home is a pseudo-infirmary based on the bundles of Blue Cross/Blue Shield statements you receive.
-your child is 2, and has a “medical resume” of sorts to facilitate succinct meetings with new medical professionals who are taking on your child’s case.
-you deny your anger to a counselor, yet you long to create an iron-on tee-shirt that reads: “Screw you! He’s special needs!” (This could also apply to bumper stickers, key rings, personal pens; hey, maybe I’m on to a new merchandising trend!)…
-you have a vast reference section under the category of your child's illness (also includes at least 5 three-ring binders with 8-pouch pockets sheets filled with medical business cards and contacts).
-the quote “it’s nothing that a little prozac and polo mallet won’t cure” is especially poignant.
-you see that doctors are human and insecure when they realize they can’t help your child; ("So that's why they call it "medical practice"; I get it!").
-out of respect and empathy, you never turn your head to look at a handicapped person, and you are especially irked when you see people stare.
-you understand “McDonald’s Envy” (i.e., kids at McDonald’s playground who do so easily what your child cannot) all too well.
-you get excited to meet another parent “in your shoes”, as if another child with the same malady is something to celebrate (?)… (It’s so odd!)
-your child’s name is permanently etched on your church’s prayer list, and you are on church prayer lists in at least 5 other states.
-upon overanalysis of your childhood, you are convinced that you had the same problem as your child, but to a lesser degree.

Faux Pas:
-being overly nice to my kid
-ignoring my kid
-treating my kid like there’s nothing wrong
-Yes, that’s right, you can’t win!!!

The Sunny Side of having a SNC:
-a SNC is a “bad friend” filter.
-all sorts of medical professionals seem to immediately recognize you when you’re out and about (“all this and fame too!”).
-you lose all old neuroses (I suppose you trade them for new ones, but let’s be positive); a clean house, for example, is out of the question.
-you gain immediate respect from strangers/friends by your “in-depth” medical knowledge; (aka, a self-taught PhD in the category of Williams Syndrome, for example).
-you get to take vacations to many big and exciting cities; “Pack your bags, hon! We’re going to Boston! (Children’s, that is…)”
-it's December, and upon analysis of the full year's worth of medical statements, you smile and think, "Gee, for what we pay out in medical premiums and deductibles, I really got my money's worth!" (It's like an all-u-can-eat medical buffet, and you're a hungry, 500-lb. fat person. A more succinct way of stating this is "the all-u-can-eat medical buffet is losing money on me!").

You have a great excuse for:
-complaining
-not showering today
-being late
-being forgetful
-being a sloth
-maniacal depression
-not paying bills
-not attending playgroups
-not shaving
-not attending the company Christmas Party, and all other outside company “fun”
-being rude to telemarketers (or, in my case, bill collectors), parents, and spouse
-not having sex
-being hostile in traffic
-in sum, total self-centeredness
-you truly appreciate every developmental milestone that your child has mastered.
-you realize that your child is somehow God’s instrument (although sometimes it feels like he’s God’s hammer!)
-you cash in your innocence for wisdom (or is this a disadvantage?).
-you begin to understand the essence of unconditional love, and strive to give it.
-In this sometimes dark place, you are able to see more vividly Christ’s face and God’s fingerprints.