Bath Time and a New Tooth!

I wanted to share some photos of Layne enjoying his baths again!

He has such a good time taking a bath! And you might be able to notice the new tooth coming in on the top! I don't really have a whole lot to update, not sure if that's a good or bad thing yet, ha! He is still weighing around 16lbs 8ozs, not really gaining. He is still vomiting daily too. Next Tuesday the 9th(he will be 21 months) he will be getting an EEG done, and I am really hoping that it looks alot better than his previous ones! Hopefully if it looks good we can start weaning the Phenobarb soon because I heard that once they are off of that medication they make more developmental progress! This medicine has never really helped him, it's just that it is addictive so it will probably be a slow wean. He is still sleeping well on the melatonin so we are very grateful for that! I guess that's about all the news for now!

Thought This was Interesting

All of Layne's medications!

Nephrology Appointment

We went to Layne's nephrology appointment yesterday and everything seems to be going well in that area! He doesn't have to go back until November!

Playing in the Grass!

Yesterday evening we took a blanket outside and laid Layne on it in the grass. He seemed to really enjoy being able to play outside, this was his first time ever! Here is a video! You will have to ignore the silly background noises!

Also here is a picture of him when he rolled onto his stomach!

Some good news-Layne weighed 16lbs 9ozs this morning!

PEG Check-up, Powerade Popsicle, More Cousins!

Yesterday we went for Layne's PEG check-up and everything looked good! He does have some granulation tissue and if it continues to grow they will have to fix that. He is allowed to take regular baths now, which I am sure he will be happy about that! He loves the water! We also learned a little bit about the G-button he will be getting, it will be the Mickey button. I am ready to get that so we don't have to worry so much about a long tube hanging out of him!

Yesterday was also Layne's first time to try a Popsicle, homemade of course! He can't have sugars or carbs so we made him a Popsicle out of powerade zero! He seemed to like it! Here is some pics of that.

We also had Layne's cousins, Devin and Dawson come over for a long awaited visit. Since they are in school and daycare they aren't usually allowed over but because it is pretty much summer they got to come over and we had a lot of fun! Here is a pic of them, all in t-shirts and diapers/undies!

Cousins!

I just wanted to share some pics of Layne with his baby cousins!
Here he is with Emma!

And this is him and Brennan! He wasn't in a good mood, ha!

Melatonin Working?

For the past 6 nights we have been trying Melatonin again. Melatonin is a naturally occurring chemical in your brain which promotes sleep. For 5 of those nights Layne slept pretty much all night! Last night wasn't so great though. He kept waking up and couldn't get comfortable or something, he did have a low temp of 100.2 so I don't know what's going on. It's not really unusual for Layne to have a low grade fever every now and then for no apparent reason.

I can't really say if the Melatonin is working or not, but I hope tonight is better. It's amazing how much different I have felt the past few days just by having some sleep! Lack of sleep for 20 months really wears you out. My memory is horrible these days and I used to have a great memory! In the past I didn't have to get the little appointment reminder cards, I could just remember it all. Now I forget all the time and am constantly checking my calendar!

In other news, we have a G-tube class this Wednesday, not really sure what they will be teaching us yet. Layne has his PEG check up and a check up with the Nephrologist next Tuesday, he also has an EEG coming up in June. The other day he pretty much rolled over onto his stomach! I had him laying in the floor and looked over there and he had rolled over and was licking the floor so of course being the germaphobe I am I freaked out! He isn't strong enough to get his arm out from under him so he was laying on top of it.

We are enjoying having the kitties around, but one of them did give Layne a pretty bad scratch when it got scared:(

ECI Update

Layne has been getting ECI services for a year now, I can't even believe that much time has gone by! So last Friday they re-evaluated his development from last year to now.

Last year he was overall at a 1 month developmental level. At that time he was 7 months old. This year he is 20 months old and at a 3 month overall developmental level. So I am glad he has improved some.

His highest ranking was in the vocal and expressive category, he got 6-7 months!! In social interaction he got 5 months, fine motor 3 months, self-help skills 0, gross motor 1 month, I believe that's all.

I am positive that if Layne's vision was good, he would be able to do many more things. Babies are motivated by things they see, and since Layne is lacking in that area he really has no motivation to try to get things or anything like that. But overall I was happy to see that he had at least improved and I am excited he scored so well with all the sounds he makes!! His vision therapist says that for a CVI baby he really does alot more sounds and alot more reaching(he kinda sweeps his arms around feeling for things) than most. She said most of them just kinda lay there not moving or anything.

YAY Layne!!!

Layne and the Kitties!

Here are some pics of Layne and the kitties, who we have decided to name Bonny and Clyde-haha! I think they will all be "partners in crime" together! When Layne cries they will come over to him and just sit next to him, so sweet!

Mother's Day!

I hope everyone had a good Mother's Day! I did! Layne and Daddy got me the sweetest gift!

This cross which had Layne's picture in it!!

Joshua had a great idea and put a pen in Layne's hand and held the card up to his hand to let him "sign" it for me! I cried so much, it was the sweetest thing ever!

We also got these two cute kitties yesterday for Layne! I hope they get attached to him and they can all be good friends!!!

This Mother's Day really got me thinking.......about how truly blessed I am.

Most people may think that Layne's condition is terrible and that he is suffering. And I am not sure what Layne feels because he cannot tell me, but I do not believe he is necessarily suffering. I believe Layne is an angel on earth and that God CHOSE me to have him. I feel blessed that he chose Joshua and I to have Layne, because Layne is his special child and he gave him to US to care for. Thank you God, I am flattered that you think I am tough enough for this challenge. It is rewarding to care for Layne because I know that this is no ordinary task. I believe that caring for Layne gives God so much joy and glory and that makes me happy.

Now I am human and I feel the feelings that all people feel. I am sad alot for Layne. But every time I get sad about it, I think about the fact that one day there will be no more tears, no more pain and no more fears(like the song) and I know that we will be greatly rewarded in Heaven. God tells us that all trials and tribulations will only last for a little while and that there is a reason we go through them. It doesn't matter if that "little while" is the rest of my life, I will never give up, never, because I know the reward is great in Heaven.

A Special Needs Mother's Day Wishlist

A mother who takes care of a special needs child is one of the most caring, giving, patient, and selfless women you will ever meet. The smallest thing will make them smile; the smallest gesture of kindness toward her child brings her such pleasure. A child with special needs is a twenty-four hour, seven day a week job. She is a giver and gives so much of herself to the care of her child rarely does she have time to take care of her own needs.

A mother of a special needs child will wish for many things, yet they are seldom for her. Her thoughts are for her child. She wishes daily for a miracle that her child will be healthy, she wishes her child to be happy. This wonderful patient woman wishes of one more tiny movement from her child's frozen limbs, or a smile of recognition to cross her child's face. This mother wishes to hear her child say I love you and hug her tight. She daydreams and wishes what if...what if.

A mother with a child of special needs watches other children run and play in the park, and wishes her child was among them, she wouldn't mind running after her child if only if only she wishes. She wishes for others to accept her child and not stare or make fun of him or her. She wishes for a new vehicle that will keep her child safe and comfortable. She loves her child with all of her heart, she will fight to defend her child's rights, and wishes others would understand why she has to stand her ground and put up such a fight. She wishes and wonders what if...what if.

A mother who loves her special needs child wishes she could take away her child's pain. She wishes and prays a thousand times a day for anything to ease her child's complicated life. She wishes she did not need to take her child to physical therapy or to the doctor so often, not because she is tired, but because it hurts to see her child go through all of the physical and medical ordeals she wishes her child never had to know. She wishes and wonders what if...what if.

A mother of a special needs child does not wish for a day at the spa. She would worry too much about her child to enjoy her day. She does not wish for nicer clothes, or a new sporty car. She sometimes wishes for time away, and then realizes she would not enjoy the time away from her child. She does not wish for nicer clothes, or a new sporty car. She wishes to give her child the best opportunity in life. She often wonders what if my child was healthy what if...what if.


A mother who takes care of a special needs child is one of the most caring, giving, patient, and selfless women you will ever meet. If you are trying to find the perfect gift for the mother of a special needs child, you should not ask, she will not say. Her wishes are not for herself they are for her child. Yes, her list is long, but her list is not for herself. Her wish list is for her child. She wishes and wonders what if...what if.

New Smile, New Sounds!

Layne has recently been doing this cute new smile.....
This video is before surgery so he still had the NG tube in, but this is his one of his new sounds!

This is his other new sound, he is so cute!

He has been able to make these new sounds because he can actually learn now that he is seizure free!!!!!!! YAY! Sorry the video quality isn't very good, we have horrible lighting in our apartment and a not so good camera.

Getting Back to Himself!

Layne is starting to get back to his normal self! Saturday night the fever was gone and he slept all night until 8:30 in the morning!!! I know this is because of everyone's prayers for rest, we got it! He is smiling and letting us put him down a little bit and just overall getting back to himself! YAY!

We had to take him for some blood work today, just to check his electrolytes, I'm sure they are fine. And just in case anyone wants an update in weight, this morning Layne weighed 16lbs 10ozs. Oh and he hasn't vomited since Saturday!

Isn't he beautiful?

Post Surgery Update

We were finally able to come home yesterday afternoon! We didn't expect to stay that long, but we did expect to stay longer than they said because with Layne's condition we usually have to stay a bit longer than the usual child stays.

Layne's PEG tube site is healing well, it is red and gooey but nothing out of the ordinary for this type of surgery. He is on antibiotics just to keep him from developing any type of infection. The reasons we had to stay longer is of course because of the breathing issues and then Layne had too much acid in his blood(he usually does and is on medication for this, but it was extra high this time) so we had to wait until that was corrected. He now has to take 15mls of Bicitra 4xs daily instead of 7mls so it went up quite a bit. They suspect this could be the reason he has been vomiting alot lately.

Layne hasn't been feeling well since last night. He didn't sleep hardly at all last night and had fever all night and day. We took him to the doctor this morning and they suspect it is something viral. I certainly hope it is this strange flu stuff going around, he doesn't need that! At the moment he has no fever and seems to be feeling a tiny bit better. Poor little guy hasn't been himself at all lately. Please pray it isn't flu(regular or swine).

I have to admit this week has been a rough one. It's hard being in and out of the hospital so much, it's exhausting for both us and Layne. I'd give anything for Layne to be healthy and happy. I am thankful to have him and so thankful that he isn't much worse, someone always has it worse. One thing that keeps me at peace with everything is that Layne has the golden ticket into Heaven and I'm sure of that. When he gets there(hopefully not soon) he will be able to run and play like any normal little boy, and I want to be the best christian I can so I can be there to see it! Oh what a joyful day that would be, to meet Jesus and to see my little boy running and playing and full of his precious smiles for all eternity.

Now it's time for pictures!

Right before surgery After surgery, and after his "episode"

In ICU

PEG Tube Feeling better! He's so cute! We were bored!