Slammer Sammer

Sam turned 4 months old on the 14th! To me the 4 month mark begins the next stage of babyhood. You start to think about things like solid food (not until 6 months), sitting up, playing with toys. Bigger baby stuff:)

I took him to his 4 month appointment this morning and he is growing well! He weighed in at 16 lbs 12 oz which put him in the 80%. He was 26.5 inches long which is in the 93%. And his poor head is still lagging way behind in the 10%! Although, I don't think the nurse measured it quite right. I think it's a bit bigger then that. He does still have some "pronounced flatness" of his head according to Dr. P. She said it will not effect him except cosmetically and so we are going to wait until 6 months before making a decision about whether or not he should get a helmet (ugh!) If you think of it, will you pray with me that God would cause his head to round out correctly in the next 2 months?

I picked the title for this post because "Slammer" is the nickname my dad has given to Sam and David and I have been calling him Sammer lately. He also gets called Sambo, Budster, Samson, and Chicken Little by various people:)

Sam is lots of fun these days! He has become quite a conversational "cooer". If I make gurggling sounds to him he will make them back to me and smile. He chuckles now if I play peek-a-boo with him and he loves for us to "eat" his neck/belly/face while making silly sounds. He is rolling tummy to back and even rolled back to tummy once during "naked time" the other day! He is staring to bat at and grasp toys and LOVES chewing on his hands including sucking on his right thumb for a few seconds at times (come on buddy!) He is quite wiggly and wants to be sitting or standing. He arches his back or struggles hard to sit up if he's back against a cushion. I have to watch him in the Bumbo seat because he arches his back so much that he almost falls out! I think maybe he is going to be more of a tantrum thrower then Kate. I get lots of comments about how laid back he is and it's true most of the time, but if he gets upset, watch out! He is very social and wants to be held lots and if he's not being held he wants to have Mama and Daddy in his sights. He is a little afraid of Kate because she's very loud these days and is still having trouble treating him gently. I look forward to seeing their relationship blossom as time goes on though! I just have a feeling that they are going to have a very sweet bond. I have felt more then once (maybe impressed by the Lord?) that Sam is really going to care for, protect, and lead Kate. We shall see.

Our biggest accomplishment of the last week has been that we've gotten Sam to start taking naps with no pacifier! He was beginning to show signs that it was disrupting his sleep and I would really be glad for him to not be attached to one. It took 3 days but he now goes down for naps with almost no trouble! He was really struggling with not having it at night and has also not been on a great night schedule so we are still letting him have it at night for now. We'll work on getting rid of it at night after he turns 6 months. It's also very helpful for him to have the paci in the car or when he is getting bored/fussy.

*This next part is probably only interesting to me. I'm just including it for future reference.*

As far as night sleep. It's a work in progress. With my two children I have learned that babies aren't necessarily born knowing how to sleep well! I recently decided to feed him for the "last" time at 7:30 pm and put him to bed right after. I had been getting him back up to eat again at 10:30 pm. He was then waking back up at 3:30 and then not getting up until 8 or 8:30 (well, he actually wakes up again around 6:30 needing a paci or position change then going back to sleep) which is later then I would like him to start the day feeding schedule wise. I know with only feeding him at 7:30 he'll be back up between 12:30 and 2 but I don't mind that. It's really nice to lay him down around the same time as Kate and know that David and I have the rest of the evening and I can go to bed whenever I want rather then having to stay up for that 10:30 feeding. I also dropped his 3rd nap (the evening one) to enable him to be ready for sleep around 7:30/8. That makes for some fussiness in the late evening as he gets tired but it's manageable and sets up a much better pattern overall.

Ok, enough information! Here are some pictures.

Little buddy was dealing with his first bit of diaper rash the other day so I gave him so extended "naked time" to help dry his skin out. You can't use diaper rash creams with cloth diapers and I was hoping to avoid having to put him in disposables to get it cleared up. It seems to have mostly worked! He only has a small patch left and it's not bothering him.

He just loves those hands!

I took this one to show how lush and flowing his hair is becoming:) It is several inches long on top but I just can't bring myself to trim it yet.

I wanted to see if he could sit up inside the Boppy pillow yet, but not really, as you can see.

"Mom, why are you doing this?"

Going at those fingers again!

Giving a half hearted smile while falling over in ernest:)

That's our Sammer at 4 months! He is such a delight to us in ever way!

Good News!

I heard from Kate's new neurologist today that all the genetic disorders they tested for came back negative! Nothing wrong with Kate's genes! :) We are so relieved and grateful to the Lord for this!

I heard from her old doctor yesterday morning that her 24 hour EEG did show continued epileptic activity. They wanted us to increase her old medicine again (which the new doctor is taking Kate off of.) I'm not going to do anything about her medicine until Dr. Wallace (the new neuro) gets the results of the EEG from the old doctor and can review it herself. I am hoping that she will give us a few more details then just "continued epileptic activity". We shall see.

I am just so grateful to the Lord that he has made Kate's genetic make-up healthy. He has been merciful to us!

No News

Well, on Thursday it will be two weeks since Kate had her 24 hour EEG. We still haven't heard anything back yet. We changed doctors (yay!) and neurology practices right after the EEG so that might have something to do with why it's taking so long. They have to transfer over the records.

We are so grateful to have changed to a new neurologist! The other one wasn't bad but we just didn't establish a good rapport and didn't feel like she was one "our team". The Lord so kindly provided us with Dr. Wallace. David met her through a wedding he photographed last summer right when we first realized Kate was having seizures. She offered to see Kate then but we had just gotten in with the first doctor and decided to stay there. Well, David emailed Dr. Wallace right after Kate's 24 hour EEG just telling her things with Kate were bad and asking for any advice. She called him 15 minutes later and offered to see Kate the next Tuesday! Amazing! We really liked her at our visit and she spent well over an hour with us discussing our concerns. She did draw some blood work to test Kate for a number of different genetic disorders that could be causing her collection of symptoms (the developmental delays and some autism type behaviors). We are still waiting on those results too. I am very eager to get those.

Dr. Wallace also is having us change Kate over to a different seizure medication. She has been on the same one for the past 6 months and it seems to be causing some troubles. Kate has developed a lot of difficulty sleeping, and she has lost weight (so sad in a toddler!) It is going to take 8 weeks to get the new medicine (Lamictal) to the right level in her system and she has to stay on the Topamax for 7 of those weeks. So far the transition is going well although I am eager for her to be off the Topamax. The sleep issues we were having were getting to an intolerable level. We were all exhausted and Kate's behavior and mood had plummeted. She was crying a good part of the day and just seemed miserable. She couldn't fall asleep at night and then would wake up around 4am thinking it was time to get up. She would be up and down until 6 before crashing again. A dear and trusted friend who has children with many neurological issues suggested we put her on melatonin to help her sleep. It's naturally occurring in our bodies and sold as a "supplement" over the counter and many people with seizure disorders need to take it to help them sleep. It has been WONDERFUL! Within 10 minutes of giving it to her Kate lays down and goes to sleep. She has woken up at 6am both mornings we've given it to her but goes right back to sleep after we comfort her. The last two days she slept until 10am! She didn't nap today as a result so I'll wake her up tomorrow:) But we are grateful beyond words for her to be sleeping again.

Kate had her developmental screen last week as well (such an exhausting week!) She is behind in all areas of her development and will be getting therapy once a week for now with more possible later on. I'll save all that for another post though.

Ok, this is another heavily medical post but I know there are some who like to stay caught up:) I am mulling over a post about all that God is showing me and doing in me through this time but it just hasn't fully formed in my heart and mind yet. Thank you again for praying. I can never say that enough, truly.

Walking in the Valley

I want to take the time to record some of the thoughts I've had as we've walked through this last month of trying to discern what is going on with Kate and how to best help her. It has definitely been one of the most challenging months of our lives. It was kind of like Kate was a simmering pot that we were watching and in a flash it boiled over. We quickly went from thinking that Kate was a pretty normal child with mild epilepsy to realizing that she has significant health and developmental issues. It is going to take work and patience to help her. That is hard to accept.

By far the hardest point in all of this came on March 23rd. That night David told me that he had been doing some research online and come across a condition called Rett Syndrome. It's a condition that primarily affects girls and it can cause complete loss of language, use of the hands, and the ability to walk. In short, it utterly handicaps the girls that have it. Kate seemed to have many of the symptoms. Now, in hindsight we can see that we got a bit ahead of ourselves, but for 4 days it seemed extremely likely that this is what Kate was experiencing. Those were the worst 4 days we have ever had. We genuinely believed our little girl could be handicapped for the rest of her life. The tears and grief were intense. We are exceedingly relieved that this has been ruled out.

But this is what I want to remember. We faced one of the hardest things imaginable as a parent and found this: God was there. Even while everything in David and I was rebelling at the sorrow in the prospect of Rett Syndrome the Holy Spirit was so near. And do you know what happened in my heart? The spell of this life was broken in a way I have never experienced before. My life has always been so easy and so happy. I didn't even realize how much I loved earth. I didn't realize how un-glorious heaven seemed in my eyes. But suddenly the life I had been experiencing and planned for myself was vanishing. I was faced with the possibility of watching my little girl deteriorate to the point of needing a wheelchair, and having me feed her, and never hearing her voice again. It was agony and it made earth seem useless. It made me realize that we are all, really and truly, it's not just words, we are all made for heaven. We are made to be with Jesus. The end of all life on earth is death. Death was screaming at me during those four days. It hurt, oh how it hurt. I had been trying to find life here and hadn't even realized it.

The cross of our Savior became huge to me. He could have left us here in sin and death. That would be just. But he didn't. He came, he died, he ROSE, and now we can have real life. Life here on earth can be sweetened by his presence and help. But best of all, we can know that our real life is going to begin after death. We are going to go be with him. There will be no children in wheelchairs, trapped inside dying bodies. We will all be perfect, beholding out precious, PRECIOUS savior! I saw this like never before in those four days.

Now, God had mercy on us. Kate does not have Rett Syndrome. I realize all of this might seem rather dramatic in light of that, but I know God took us through those days because he wanted us to see him more clearly. He wanted us to grow in many ways. He wanted us to praise him. My faith is stronger now because of facing that awful possibility. My compassion is more acute for families who do have children who will not walk, or speak, or be well this side of heaven. I want to hold on to these things. I don't want earth's insidious whisper to find rest here to deceive me again.

The words to the song "The Valley of Vision" from the book by the same name were flowing over my heart through this season and I'll leave you with them. Read them all if you will, they are so very good.

When You lead me to the valley of vision
I can see You in the heights
And though my humbling wouldn’t be my decision
It’s here Your glory shines so bright
So let me learn that the cross precedes the crown
To be low is to be high
That the valley’s where You make me more like Christ

Let me find Your grace in the valley
Let me find Your life in my death
Let me find Your joy in my sorrow
Your wealth in my need
That You’re near with every breath
In the valley

In the daytime there are stars in the heavens
But they only shine at night
And the deeper that I go into darkness
The more I see their radiant light
So let me learn that my losses are my gain
To be broken is to heal
That the valley’s where Your power is revealed

(taken from sovreigngracestore.com)

Pajamas and Ice Cream

Here is Sam getting in a little morning reading while strengthening his neck and back:)

Last Thursday Aunt Liz and Uncle Mike invited us to Sonic for an after dinner treat. Of course we said yes! I gave Kate her bath before dinner so she could be in her jammies and all ready to go get ice cream after dinner. I snapped a few pictures of her in the bath, but she wasn't into it, as you can see below:)

Sam hung out with us. They aren't ready to take a bath at the same time yet. I am looking forward to when they can though! This poor boy hardly ever gets bathed I'm ashamed to say.

Kate wore her ice cream jammies to get ice cream. I was trying to get a picture of her and Aunt Liz but she had spotted the merry-go-round and was totally distracted.

All smiles once she got on the horses!

This is how Sam spent our time at Sonic! This is highly unusual. Usually if he is in his car seat but the car is not moving he cries his head off!

Watching TV with big sister

He is strong enough to sit in the Bumbo seat for a few minutes now! Kate makes me laugh so hard in this picture. Sorry to catch you at such a bad moment baby girl!

SUCH a smiley boy!!!

Adorable feet!

Kate's Health

It's been awhile since I've updated on where Kate is health wise. When she first got diagnosed with the Epilepsy and put on medicine (which worked immediately) it was easy to forget anything had ever been wrong. The whole process was so quick and seemed resolved so easily. However, about 6 weeks ago we began seeing seizures again. These were different then the initial seizures because she was waking from naps and nighttime sleep. She would be going through a series of little all over twitches when we would go to check on her. She would have 4-5 twitches and return to normal. I called the doctor and she increased her medicine dose and told us to call back in 2 weeks with an update. We saw decreased seizures but not total disappearance. So, I called again but the neuro didn't want to do anything else just then and said to call if things continued.

Well, they have continued and seem to be worsened. David and I both feel like she is having seizures at times during the day that don't show any symptoms. There are moments when Kate will be totally fine and playing or eating and then will suddenly begin to cry and become very upset. She is also continuing to have the seizures that wake her up at night. After I called the neuro again she ordered a 24 hour EEG. It's scheduled for the 24th of March. This means Kate will go in in the morning to have the electrodes placed on her scalp then we'll go home and she has to wear them for the next 24 hours. If there is any seizure activity the neurologist will be made aware of it promptly incase we need to make any medicine changes. It's obvious to me that a medicine change is needed but I think the doctor needs more info to go on then our rather vague reports.

I am relieved that Kate is going to have the 24 hour EEG because I really feel like we need a better picture of what is going on with her. I am really hoping some seizure activity shows up because I know she is having seizures and I want her to get the treatment she needs. I am also really nervous! How we are going to keep her from ripping the electrodes off over a 24 hour period I don't know. Hopefully she will forget they are there after a time. David is going to take the day off from work to be home and help. I don't think there's anyway I could care for Sam and keep Kate happy and distracted enough otherwise. I'll update once we have the results of that.

On the developmental front, David and I finally took the plunge to have Kate evaluated by Mecklenburg county's child development service. We have a number of friends who used this service for their children and were/are very happy with it. Our experience thus far has been very good. I had the initial interview with the case worker yesterday morning and I really like her. Kate has a hearing and eye exam on Monday and then on the 31st of this month the case worker, a speech therapist, and a psychologist will come to our house and do the actual eval. They test Kate in 5 different areas of development (language, gross and fine motor skills, social, and cognitive) and we will get the results that same day. If she is 30% delayed in one area or 25% delayed in 2 or more then she qualifies for therapy through the county's program. If she doesn't qualify but does have delays they will help us get set up with some other venue.

To be honest I'm kind of hoping she does qualify! Her slow progress in talking as well as in understanding what we say to her has been frustrating to both David and I. She is able to communicate her wants/needs pretty well using just one word at a time but we really want to see her grow in knowing how to put words together to express her thoughts out loud! It's truly hard for me to imagine her ever talking. I can't even picture what it would be like to have a conversation with her, however rudimentary it might be.

If you took the time to read all of this, thanks! I certainly wish that we weren't facing all these things with our little girl. I wish she didn't wake up crying from seizures. I wish she would sit and let us read a book to her, or pretend to care for her dolls, or know what to do when I ask her to get a diaper for Sam. I know all these things will come in time even if I can't imagine them actually happening. And I know God has made Kate. He made her the way she is for a reason. Probably many reasons. He will give us the grace and wisdom to care for her as we ask him for it. He can heal her of her seizures so that she doesn't have to be affected by them. She is a precious girl and I love her so very dearly. I want to help her in every way we can!

Just Pictures