Thursday, August 21, 2014

Oh. Hi there.

It's me. And no,I don't think I've been hacked. I believe *I* am actually posting on my blog.

Novel concept,huh?

OK, so let's just completely disregard that I haven't blogged for an ENTIRE year. 365 days. To the day. I might have planned that. Or I didn't,and just stumbled onto this ghost town about a month ago,and thought about resurrecting these dry bones.

But,here's some good news:

We're alive. Beyond that, I've got nothing. OK,maybe a few things. Or a lot of things. Or too many things to discuss. We'll see. One of the options will win out.

So,you might be wondering...what y'all been up to over the past 12 months? (We live in the deep south,everything is y'all. Please excuse this about me. It's endearing. Or whatever.)

Welllllllll. I'm going to tell you. Sort of. Maybe not today. Or tomorrow,but suffice it to say, this has been the biggest, wildest, craziest year of our families life SO FAR. And,I make sure to say so far because I have this weird feeling that the Holy Spirit has only just begun wreaking absolute havoc on our family. All for His glory,right?

HA! HA. Ha. ha.  Oh,excuse me for laughing,but if you've ever been in the palm of God's hand, you know that it's not exactly a comfortable place to be. Opposite,really.

I have pretty much decided that the only way we can testify to the fact that Jesus hasn't given up on us yet,is to share the story as it evolves , which is so scary,because what if we fall flat on our faces- like,just in general?

Well,I guess that's why we're walking by faith. Sure of what we hope for,but certain of what we do not see. And believe me when I say,there is SO SO much we do not see.

Which is why, if you will notice, my blog has been re-named The Empty Pages. Truly,no idea. I can't even fathom where this train is rolling to next,but the book is open,and we're ready to write this next chapter just as soon as God hands us a pen.

Wednesday, August 21, 2013

"Erik,we really need to get the camera out and get some more picture of Pacey."

I can promise I say this every 2-3 days,but the camera rarely leaves its spot. Can.not.even.

I am trying to accept this busy season in our lives,and go with it,but I've never been real good at that. Erik is more of a go with the flow type of person,and he tries to counsel me on this concept,but it's lost on me most of the time. I am trying not to be SO hard on myself. I really do hold myself to high standards,and have a hard time when things don't go the way I think or envision they will go. At the end,it's only me who gets let down. Being a military wife,I just "suck it up and soldier on",but I'm finding that's not always the best way to do it. I did talk to Erik about some things I am struggling with,and he came up with some ideas that will help me to feel better physically and mentally.

As many of you know,who are longtime readers of this blog,I used to be obese and lost around 100 pounds. This happened a few years ago when Erik was deployed,and I had been doing well on maintaining that weight loss. However,my emotional state has been less than stable lately,and I found myself reverting to those old ways. I gained a few pounds,and said...oh,not a big deal,I can drop that quickly. Then,it was a few more,and I thought I might need to address the issue,but before I knew it,I was up over 15 pounds,and my clothes were SO tight I could barely fit them. How's that for embarrassing? I know I have a tendency to overeat,but it really came to a head. I was indulging in treats at night after the kids went to bed,to "reward" myself for surviving the day.

Not a good idea.

Now,I'm trying to undo the damage I did there. It's so hard. I'm trying to be more active during the day,and really watch what I eat. I'm using myfitnesspal to track my calories. I'm getting ready to turn 30 , and I know that I need to straighten it up before I end up being 200 pounds again.

In other news, Erik's going to school for the next 5 weeks,so he's off duty at the house. ;) The kids and I are making things work,although we miss daddy already. For some reason,Pacey responds better to him than me,so it's kind of tough dealing with the behavior problems on my own.

Speaking of,I just had to interrupt this blog post to go clean up puke (Pacey). Shenanigans,always shenanigans!

Well,only about a week more of craziness,and then we're headed to Gigi's house! Woo woo! Since Erik's working so hard,we're going to take a little vacay to give momma a break.









Friday, July 26, 2013

14 months and 3 months home!

Sorry about the long time between posts. I'm sure it would be pointless to tell you all that we've been quite busy,but there is a reason why I don't hop on and update as much as I like.

Summer hasn't been quite as fun as normal,but we are trying to tick off as many specialists as we can,and get into a good routine so that when Fall comes around and activities start back up,it won't be quite as hectic.

So far we've seen the ophthalmologist and Pacey's eyes are great. We won't see them again until he's 3 or so. We've also seen the cardiologist and we won't see them ever,because P has a perfect heart. Now,THAT is a huge relief. We are working with an ENT doctor and having monthly hearing tests to make sure that the fluid is his ears aren't causing any hearing loss. We originally went to an audiologist,and she said that Pacey had hearing loss. Well,when she was doing the test,she kept calling his name. At this point,he had only been home for about 6 weeks,and he wasn't really responding to it. I told the lady to make noises and he would respond,but she was less than helpful. When we went to the ENT,he was doing a much better job of responding to name and noise,and he passed with flying colors. Children with DS have notoriously small ear canals,so we have to be extra careful about the canals and keeping them clear so that he can hear well. The only specialist we have to continue to see is the gastro doctor. He deals with the reflux issues. We first tried out Zantac,but that was a joke,and the vomiting didn't decrease at all. So,they are trying us on Prilosec...which is helping,but we still have spit up every single day. However,it's the only real MEDICAL issue that we have,so I'm not complaining about that.

We are also seeing a Speech,Physical and Occupational therapist once a week,and the state Early Intervention program comes twice a month. OK,confession. They aren't that helpful- any of them. But,we take what help we can get. I keep Pacey on a pretty aggressive program of my own,and when we go to therapy,I find that I'm sitting there thinking....this is pointless. Fir instance,speech therapy is mostly where Pacey sits in a little highchair and the ST rolls cars in front of him and says vroom,vroom. Then,she brings out bubbles and blows them while she says pop,pop. I mean....it's silly. I don't want to ever feel like I didn't do enough,though.

When it comes to gross motor skills,Pacey does very well. He is hands and knees crawling like a pro,and we goal to have him crawl 1/4th mile a day,which is roughly 35 times around this little track I made through the house. I don't have him do it all at once,we break it up,but crawling is good for the brain,so it's a must. I am also trying to add more fine motor skills to our day,because he was really lacking in that area. We play with blocks,and work on putting them in the bucket,take them out,pass them back and forth between hands. He thinks its torture because I won't let him throw the toys. ;)

Also,we have been working really hard on oral skills. He is now drinking from a straw,which wasn't too hard to teach. It's good for the oral muscles to be able to suck from a straw,and since he just turned 14 months,I was ready to take him off the bottle during the day. I am still doing one at night to help strengthen the bonding. Juice boxes were a big help in getting the straw going. And,here's some interesting information for those adopting a child with DS. They don't know how to chew,or learn how to chew like neurotypical kids. It's so strange. I was just feeding Pacey food thinking he was doing fine when the ST told me that he was actually "munching" which is what it's called when you chew with your front teeth. DOH! I didn't even realize. So,I've had to start working really hard with getting his jaw to chew the food. He can,but I have to hold my finger in the back of his mouth to facilitate the chewing. The problem is that DS children have low muscle tone,and it usually causes the tongue to be very weak to move the food to the back of the mouth. I do not want him to chew with his front teeth,so I'm working on it,but I have a feeling that I will be sitting with my finger in his mouth for a loooooooooooooong time.

Gosh,looking back over this update,it doesn't seem very interesting.

Here's what you really want to know. Is Pacey doing better? Well,yes and no. I did notice a big shift in attachment between months 2 and 3. He seems to understand that I am his momma,and I will meet his needs. He does calm quickly when I hold him,and he will crawl to me over other people. We still "cocoon" him quite a bit,and do not let other people hold him. Sometimes people with DS can be overly affectionate with strangers,and we don't want to start that. A lot of people ask to hold him,but I just politely decline and it has gone well so far. He doesn't reach for people standing close by anymore,and he doesn't go up to strangers. If we go to story time at the library,he will sit on the floor near me,and won't wander. Also,the stimming is so much better. Now,you will hear 2 schools of thoughts on this,but we are in the camp that we must stop stimming,no matter what. It's not appropriate or helpful,so we make him stop. I've had to get creative,but we have seen a huge improvement. The only things we still deal with is hair pulling (his own) and thumb biting. The rocking,head shaking,and teeth grinding have stopped (mostly-very occasionally he will revert).

On the other hand....Pacey is very intense. I describe him as being a house on fire,and I'm just trying to contain the fire. It's still really hard,and let me be honest,there are times when I HAVE to walk away...sometimes outside. It is hard,hard,hard. I get so down on myself sometimes,because he is just a baby,and I am the adult,but man...do I want to just lay in the floor and cry sometimes LOL. I also feel sorry for the girls sometimes because they are so good with him,but sometimes I think we all just want a break.....from the screaming and mania that surrounds him at times.

I still maintain that we are just taking things one day at a time,and we don't think beyond that.

PS- Sorry that I don't have new picture. My laptop is being repaired right now,so I'm using Eriks!











Tuesday, June 25, 2013

Wow, Pacey man is 13 months old today! I can hardly believe it. We met him at 10 months old,and boy has he grown!

On the weight/height department,he has gained 4 pounds ( I think it's more at this point,but we need a weigh-in),and grown 2 inches. Not bad for 8 weeks!

He is still primarily formula fed,but we are slowly weaning him onto more table food. He sits with us at dinner every night and eats a little bit of whatever we have. Tonight,it was a meatball and green beans. He seems to chew well,and luckily,doesn't seem to hold or hide food in his mouth. Since bottle feeding is very important for bonding,we are going to stick with it for a while longer. He can drink out of a sippy cup,but I'm not pushing it right now.

Also,his top 2 teeth came in,so he has 4 teeth now. I'm suspecting that there will be more shortly,but I haven't seen anything yet.

Physically,he is growing by leaps and bounds. My goodness. Something new every day! I love it. He is creeping up on his hands and knees. AND! He learned how to sign eat! On the one hand,I feel like a meanie sometimes because I do not let him sit around during the day at all. If he is awake,he is doing something. It might just be listening to classical music and sitting in the bouncer playing,but he is not left to dither. And,yes, I make him work hard. After his morning nap,we do pretty intensive physical therapy to help his body get stronger. Nope. He doesn't really enjoy some of it,but we do it anyway.

We're trying to work on some of his (many) sensory issues,but it's a one day at a time thing. He is starting to use his hands more,and we are giving him sensory input as much as we can. We started doing the Wilbarger bushing protocol,which is using a surgical brush to brush his arms,legs,and back with pressure. Then we do joint compressions,and give him deep pressure on his body. He doesn't like it,and occasionally I can get the girls to entertain him and distract,but otherwise,he screams. However,we are seeing results,and as soon as it's over,I try to do something fun that he likes to do.

I am slowly starting to see some light in this tunnel. Not gonna lie,it's been hard as heck. I still don't know what I'm doing most days,but I am trying as hard as I can. I think Pacey is starting to understand who I am,but we are still guarding him very closely,and not allowing others to pick him up or show him affection. We are working with a number of therapists and they have been told not to make continuous eye contact,or show him any affection during sessions. They show me what to do,and then I follow through.

We are also working a number of angels on the stimming. Sigh. It's just exhausting some days. It does seem to be improving,though...maybe.

I can't wait to hit month 3,and see how much farther he has come. Thank you God,for what you have done,and what you are going to do.

My loves on Father's Day!












Thursday, June 13, 2013

8 weeks.

Woo-hoo!

It hasn't been quite 2 months,but we have officially been home for 8 weeks. I'm about to drop some serious wisdom on y'all. Prepare.

I would not,for all the money in the world,go back and do these last 8 weeks over again. Nope. No. Uh-uh. Never.

Also, Down Syndrome? Not a big deal. At all. I mean, really. Down Syndrome is the absolute least of this kids problem. Here's the one thing I notice about DS. You have to teach the child everything,even basic things such as how to sit up correctly. They can and do learn,it just takes a little more effort. Other than that,whatever. Not a big deal.

Oh,and PLEASE,friends PLEASE,for the LOOOOOOOVE. Do not, under any circumstances walk up to someone with a child that has Down Syndrome,and launch into a tirade about how cute their child is,and how ALL people with Down Syndrome are angels,and are just the sweetest, happiest, most loving people in the entire world.

It's just not true. So stop. Don't think and,and certainly don't say it.

I mean,yes. I am assuming there are people in the world with Down Syndrome that are sweet and kind. However, Down Syndrome does not equal happy,kind,loving and sweet. Just like neuro typical children,they have personalities- that range the entire spectrum. Now you know.

Also, kids don't belong in orphanages. There's a reason why the United States eradicated them years ago. It's not a good system,and it doesn't work out well for the children. Unfortunately, Eastern Europe isn't there yet in terms of being able to take on the children in foster care situations,so they wait. In beds. All day. Every day. Reality.

Can you even imagine? I am not a sit still kind of person,so the thought of even being on bed rest during pregnancy made me crazy. Can you imagine being a helpless,vulnerable baby and laying flat on your back ever waking hour of the day. In fact,probably most of your hours are waking,because you don't really want to sleep,since you haven't expanded any energy. You just start dying inside. A little at a time. Except,maybe you have determination,and you're not ready to give up the fight.

So,what do you do?

You survive,that's what. And how do you survive?

You stim. Well, they stim. What does that even mean, you ask?

 The term "stimming" is short for self-stimulatory behavior, sometimes also called "stereotypical" behavior. In a person with autism, stimming usually refers to specific behaviors such as flapping, rocking, spinning, etc.

And this is the reality of my life for the past 8 weeks. Mistakenly,I thought that Pacey (being so young and all),would be docile,listless, and pretty much unable to do anything. I knew about 'stimmigng', but thought it was for the children who had spent years in institution settings.

WRONG. Just in case any other mothers who aren't there yet wonder this,too.

Pacey is a bit of an overachiever,what can I say?

We didn't realize until we brought him home,that he had a number of 'bad' behaviors from his time in the orphanage. The first thing we noticed was that when he put him in the crib to sleep,he would lay on his back and shake his head back and forth. Not just a gentle type of head swinging,but a very violent shake where his eyes would roll up in his head,and his mouth would hang open. It was painful to watch. We tried to stop him from doing it the first few days,but he could not stop. Erik and I tried it on ourselves one day,and were afraid that he was essentially giving himself shaken baby syndrome. About 3 days after we got to our home,I made it mission to get him to stop doing it. It was exhausting. He would do it when he sat in the swing. He would do it when he was in his car seat. He would do it when he laid on the floor. I literally could not leave him alone for ONE single second. I was determined not to give up,though. So,I started doing a number of things to combat it- putting him on his stomach to sleep,and patting him until he was in a good sleep. I put links and toys on the door by his car seat to keep him entertained in the car. I kept him busy as much as I could. It wasn't long before I was able to get him to fall alseep without doing it-but no sooner had I congratulated myself on a small victory,before I noticed a number of other things he was doing. He rocks back and forth, bites himself, pulls his hair, grits his teeth.....

Like I said,he's a determined little guy.

To be honest,I was really not prepared for it. It stressed (and still does) me out SO bad. I mean,it is pathetic to see a 10,11,12 month old hurt himself just to FEEL something. It's not right. It makes me feel angry, at so many things.

We are working so many angles while we find out more about why this is going on. Basically,once a child has learned something,it's hard to get them to unlearn it. Especially when the child is cognitively delayed. They don't really understand why they can't soothe themselves the way they always have. 

I wish I could say that he's all better now. That he sleeps at night like a baby should,and there's no craziness...but it's just not so.  There are times when I stand over his bed,patting his back for 20 minutes to get him asleep,and no sooner do I walk out of his room,he's in there rocking back and forth. It's going to take some [more] time. More patience. More research. More resources. More.

And somedays,I feel like I have nothing more to give. Nothing. I have never been this tired in my entire life.

But here's the wisdom that I'm going to leave you with:

God,in His sovereignty and glory will give you just what you need for each day. Never more, never less. And it's enough. It really is.

Continuing to live one day at a time,on His grace.





Friday, June 7, 2013

Goodness.

Forgive me.

I had no idea that I hadn't written for so long. Truth be told, most days I'm happy to hit the pillow at night knowing I fed the children 3 meals and put on clean underwear.

Life is hard right now. I keep coming here to talk about it,but I fear that I will seem like such a negative Nancy. I don't want to just vent and pout,so I've been keeping it close to the vest. It's really hard to figure out what to share vs. what not to share.

Here's what I can tell you:

Adoption is hard. Not just like,hard,but...H-A-R-D.

There are so many things that I just didn't expect.

Despite the fact that I read all the books,took the classes,read blogs,and talked with other adopting mothers.

I am tired.

Insanely tired. I forget who I am on a daily basis. I'm struggling.

All of our children are healthy and well,and for that I am thankful.

Bonding and attachment are going to take longer than I thought.

EVERYTHING is going to take longer than I thought.

This is a season. It might get better. It might not. Only time will tell.

I have never seen Jesus as up close and personal as I have during this time.

I'm not giving up,giving in, or letting go.

Pressing on. 













Sunday, May 19, 2013

One Month Home.

I had this big plan to write up a celebratory post about Pacey's first month in America...but.I.am.so.tired. To be honest,the kid had a bit of a setback this weekend (cause unknown at this point),so I'm a little wearier than usual.

However,in the interest of keeping up with his progress (because there IS progress),I want to write about my guy.

Let's start with eating. Now,when we got him from the orphanage he was eating 5 bottles a day. Each bottle was about 10 ounces,and it was mostly boiled water mixed with porridge. Not exactly nutritious. As a result,he was very malnourished,although not starving. When he ate,the food would pour out of his nose because he learned to gulp it so fast. He was time trained to eat very quickly by the nannies. Once we brought him home,we made his bottles texture wise as close to what the orphanage was doing. We also bought a glass bottle there,and used that,since he was used to it. We did transition him to the playtex bottles with liners once home,and he has done well with them. We were having to put quite a bit of rice cereal in the bottles for thickness,but we've decreased the amount slowly. We've also been doing a step down program with the nipples. We had to cut large holes in them,because that's what he was used to,and the formula was pretty thick. Now,we buy new nipples every 2 weeks,and each time the hole gets smaller and smaller. It helps him to work a little harder to eat,and makes his jaw stronger. He is getting 4 bottles of formula a day. I've also introduced juice (mixed with water). I was giving it to him in a bottle,but then decided just to go to a sippy cup. He is doing well with that,too,and I do work with him on holding his cup. I do not let him hold his formula bottles as feeding is an important part of attachment,and we're still "attaching." He is eating baby food 2-3 times a day. I do the stage 3 foods,and he does better with the thicker textures. My only real goals with eating are to introduce more solid foods,and help him learn to put food in his own mouth.

Another area where we've seen tons of improvement is bathtime. Prior to coming home, he never had a real bath at the orphanage. His skin was so dry,and his poor feet had thick yellow build up on them from not being washed. He hated the bathtub so much! He would scream as soon as we sat him in it. However,he now loves the bathtub,and splashes around like a pro!

He is also becoming stronger physically. We are putting him on his legs to stand and play for short periods of time. We are also practicing putting him on his knees to play. It really helps to develop his core muscle when he is working to hold himself up. He is sitting up a lot more,and he does a mean army crawl. We have just started to work with Early Intervention on goals to help get him moving.

There are just lots of good things happening. He is thriving,he is learning,he is growing. We are so happy about that.

Are there struggles? Yes. A few. Is it hard? Yes. Am I still learning about how to help him? Yes. Does he understand that I'm his mommy and will take care of him forever? No. He's not there yet. If the next door neighbor came over and took him,he wouldn't cry or care..as long as he was fed lol! Attachment is going to take some time,along with some other things we're dealing with. We are working with him,though,and feel confident it's just going to keep getting better. And just for comparison,here is the day we met him at the orphanage,and one from last week where he was eating! :) He's gained a pound a week since coming home.