Some Really Cute Easter Pics.. And Extreme Couponing!

I just had to share some of these Easter pictures we got of Jake. We did a little Easter egg hunt with the three little boys, but Jake didn't really get it. He just wanted to put everything in his mouth. Still, it was extremely adorable. Take a look:

I am for sure printing off some of these to hang up!


In the meantime, I am learning the ropes of COUPONING! Have you ever seen EXTREME COUPONING on TLC? At first I thought coupons were for people off their rockers, BUT- I don't know what it is... the rising cost of food, the increasing bills, that has made me take an interest in couponing and I am trying to teach myself. I have found some great couponing blogs to follow.

I looked a bit like a freak walking out of CVS with 4 newspapers, and I already have an associate there that hates my guts because I'm a crazy couponer. But what can I say? I've already saved some major moolah on things (even gotten things for FREE!) and I haven't even scratched the surface of couponing really. It obviously takes guts and practice, but I'm willing when I see those amazing deals pop up. I also think it will be a great way to have a year's supply. I'm even making a huge coupon binder that I can take to the store so everyone can stare at me.

We just found out we are taking a trip to EUROPE later this year, so of course I'm even more motivated to save up some spending money.

EXTREME COUPONING HERE I COME

We'll see if it was worth it this week, but I think it will be. I already have some FREE deals I'm planning on going for.

(Stay tuned for my deals post: I'll show you what I got, and how much I paid! Hopefully it'll be good)

Equipment and Therapy

IT Finally Came!!!

The long awaited stander finally came and we were so excited! (Me especially) We had been practicing standing in his braces on the floor in preparation for the stander. The braces help stabilize his legs and give him the support he needs to figure out how to stand and get used to the weight through his legs.

What I didn't realize (and wouldn't have if it weren't for our lovely therapists) is that children have to get used to the pressure of their body weight and gravity through their legs, knees, and feet before they can walk. This pressure is also very important for growth and development for bones, muscles, and joints. Not only is the standing good for physical development, but cognition as well, as is the case with any movement. Movement = cognition = movement. So you see why this is so important.

The goal is to work up to about 3 hours per day (1 hour at a time) in the stander unless he gets so good at standing that he can do it that often on his own without the stander's help. We'll see how things go.

It took me a couple times of working it over to figure out how to use this contraption, but I daresay it's a handy dandy thing. One I'm so grateful exists! We have really only been using the stander for about a week, and already we have seen changes in the way Jake responds to weight-bearing.

We have had a couple set backs...one we are trying to work out currently. His skin is so sensitive that the weight through his legs and through the braces causes his heels to turn bright red after about 5 minutes in the stander. So we've been doing about 5 minutes at a time multiple times a day. The only thing is that he keeps getting a little red spot here and there that won't go away after about an hour which is a bad sign. If we kept on going without addressing the issue it would cause a blister, which would cause us to not be able to use the stander for a very long time until it healed, which would cause slowed progress with the standing. And so I have to figure out a way to get over to the orthodic place and get his braces adjusted without a car to drive.

We usually do bubble time in the stander. He's very curious about bubbles.

Speaking of bubbles, Jake also got a bath chair! This has worked WONDERS in the bathing department. Before we got this I used the swimming noodle (located in right upper corner of photo) and we put it under his head and he just laid flat in the tub. It worked, but   A. how uncomfortable would that be?   B. He couldn't play with his toys or see the water, and I think being upright is so good for the cognition.

The bath chair we originally got, Jake was much too advanced for. We ordered it right before he learned how to sit up, so the whole thing lays down and has about 5 straps on it. It's also so high you would need a spray nozzle to bathe the child, and I don't have one. So I gave that one to Jake's physical therapist to pass on to a family who needs it and she gave me this one that was in her office from another family.

It works pretty great!! I don't know if he could tolerate it for a long period of time just because the strap can dig in and if I loosen it then he tries to propel himself backwards to lay down and gets caught... so I have to tighten the strap pretty tight and if he flings himself backwards I just try to get him to sit as straight as possible again. At the end of the day he's tired of holding his head up so he tries to lay down as much as possible.

But how cute does he look? And so grown up when he sits and stands.

Here is a video of Jake crawling during therapy. We are trying to teach him to move his arms and legs correctly, and trying to build his strength in his arms and neck. The hand and knee position is also very good for his hand development, again because of the weight-bearing. Oh the things I never would have thought of! I quite enjoy being a therapy mom overall, even though I obviously have my days, because I feel as if I'm getting an education at home. I someday want to go back to school, but I'm highly interested in the human body now and would love to do something with therapy or nutrition.

Anyway, I digress.

Enjoy the video! I hope it works right

Home With Honor

Home from Chile

We all went to the airport to look for Kyle. It was a BIG DAY. As for me, I hadn't seen Elder Kyle Grimes since Christmas 2009. As for Jake, he has never met my amazing little brother!

 All the kids together for the first time in years! Note that I am the shortest and that my 14 year-old sister looks like my older twin.

 He was so excited to show us everything he had brought home, that he started unpacking the second we walked in the door. He had some amazing things to show us! A lot of what he brought were gifts from the Pobletes, a family Kyle became very close to in Chile. They fed him all the time and took care of him for us. They sent us many gifts and had to sacrifice for them all.

In the picture above Kyle is giving my mom some beautiful pillow cases that Sister Poblete made her BY HAND. They're satin and have pleates and little beads all over. They are beautiful and she stayed up until like 4 AM making them he said. This family does not have a lot, and so they really had to sacrifice. They are so sweet.

 Next, my wonderful grandparents came into town. They live in Arizona and so we don't get to see them a whole lot. This was a special treat. Grandma picked up Jake and tears just came to her eyes. I think Jake carries a soft spot in their hearts. I also think they were blown away by how much he's changed since they saw him this summer.

 I don't remember this picture being taken, but I'm glad someone took it.

 Jakey and Uncle Bob. The top picture is Jake wearing the cutest little Chilean hoodie Kyle brought home for him. I got a cool one too so I'll have to take a photo of me wearing mine.

I think they adore each other... what do you think??

My mom made Jake two adorable little ties for his birthday

Always a crowd of people around the baby when we visit!

Passing out after Thanksgiving dinner. We re-did Thanksgiving since we haven't had one together in a very long time. It was, as you can see, de-licious.

The plane ride by myself with a baby wasn't too bad. He is, after all, a very good baby. He did cry for a little while as is expected of babies traveling all day and being expected to hold fairly still. But Yo-Gabba Gabba probably saved my life.

As well as going to the dollar store and buying some new books which I put in baggies along with some treats. We had a fun mommy-son getaway!

A Big Week

MRI DAY

 Baby had to get his MRI done: the first since he was born. He'll get a CT scan every year, but this year they wanted to do a full MRI. The not-so-great thing about it was that they had to put him under for it, IV and all, so he wouldn't move during the procedure.

This is us in the prep room, waiting to get Jake's IV.

He was terrified and screaming, crying, and hugging me when they started his IV. It broke my heart and my hands were occupied, thus, no pictures. And to top it off the first IV blew so they had to do it again. I picked him up and started singing to him while they put the medicine in and then he fell asleep in my arms, which was really upsetting. He just went limp. It made me tear up a little just thinking of all the times we will have to undergo the same thing, or the same thing + brain surgery.

But we went out into the hall and waited (my lovely mother-in-law was with me) and it took about an hour. He woke up great and got to drink some apple juice. Next we had a neurosurgery appointment on another floor so we headed there.

The surgeon was able to access the new MRI info right away. We got to see the old MRI vs. the new MRI. Wow, was that amazing! In his old MRI his whole head was mostly fluid with a tiny bit of brain in the front. Friday's MRI showed that the brain is filling in VERY nicely! It also revealed something unexpected, a very large cyst right on the top of his brain. It's probably about the size of a cutie orange. They couldn't see it before because there was so much fluid, but now it's visible. I freaked out for a minute, until the doctor explained that many people have cysts and they don't do anything. Jake's is just very large because the hydrocephalus has filled it with fluid (since hydrocephalus means extra fluid in the brain) but he was confident that it wouldn't cause any problems and we wouldn't have to do anything about it. He said it should shrink as Jake gets older and it shouldn't interfere with brain growth or anything.

We could see the shunt catheter go right through the cyst. The doctor said that the end of the catheter is still surrounded by fluid, so that means the shunt will probably last a little while longer before becoming clogged and failing. However, he said that as his brain grows that spot will fill in.

There were a couple of really exciting things he said to us. He said he thinks Jake is a really good candidate for a surgery called a Third Ventriculostomy. It's where they would go in, put a hole in the brain tissue where the fluid could drain properly, and then he would be able to be shunt free!!! Not everybody is a candidate, and not every surgeon will attempt the surgery. But he said that the older he gets, the better the chances are that the hole will stay open and not heal. We're really aiming for 2 and older. Hopefully his current shunt will last at least another year, then we can try the new surgery! Huge blessing!

He also looked at Jake and talked to me about his skills and said, "Well he's definitely above his skill level for kids his age with hydrocephalus. Especially with the size of head he's got. You're doing a good job with him". YAY!! It helps me to hear that. It makes me feel like I'm not failing. It was a day full of good news.

Here are some pictures from today I thought I'd share.

Here is Jake in his leg braces, standing on his own! His physical therapist has his legs in this picture, but a couple minutes later she only had one hand on his back, and then another minute later, she let go! It's astounding what he's accomplishing at barely 12 months.

Next, he even took a few steps (with a lot of help) but it was the first steps he's ever felt. I don't have pictures because I was trying to distract him and needed both hands to do so.

After a long and much-needed nap, we tried finger painting. I have found a couple sensory blogs that I've been following, and one of them had this great recipe for chocolate finger paint. It was easy since the only ingredients are hot cocoa mix and a little bit of water.

Not so sure what the finger paint is for... but we'll kep trying. I mostly did it for him, but it was still good sensory play.

After that, we tried playdough. I made the salt kind. We've been trying out playdough over the last week and he hasn't been so sure about it. He doesn't really like hand and arm sensory stuff which is another reason I'm committed to doing it more.

But today he actually liked squishing the dough.

Pulling at it. Not too sure...

Have to taste it! Yuk!

And one cheesy pose because he LOVES posing for the camera.

And that was our busy but fun day of trying new things!

P.S. If you haven't checked out my added stuff on the "Jake's First Year" page, check it out. It's a work in progress,but I"m getting there.

BIRTHDAY

How has it been one year already? A year ago I got the best birthday present ever. Happy Birthday Jake, you are so precious.

 Yummy Birthday Cake!



Just one of those days.....

Ugh. Today was just one of those days!! I've been trying to hold off making new posts until Jake's first year synopsis is completed, but I'm giving up because I just need to post about today.

I know most of the time things just seem to be going good and Jake seems to be making progress and all is well. But not every day is like that. I know I'm not the only mom out there who feels that way, and especially not the only hydro-mom either. Every mom has to deal with hard days no matter who you are. It's the lack of sleep/fighting with your kids/trying to keep everything in some kind of order syndrome, and it's normal, but today was just awful.

With therapy there are so many ups and downs. It seems like it's 2 steps forward, 10 steps back. Therapy is pretty much my life. I try to do it every single day and most days out of the week at least one person is coming over to do therapy with Jake. But it's becoming harder and harder to do therapy by myself! Jake is getting so big and so stubborn. Usually his Physical Therapist (PT) or Occupational Therapist (OT) are putting him into position and doing the exercise and I'm in the front of him trying to entertain him with a toy so that he'll cooperate and be interested. When I'm by myself, I don't have anyone on the other end to keep him occupied, and I'm usually by myself because Kenny's so focused on getting through school that he leaves early in the morning and comes back later at night after Jake's gone to bed so he can't really help me.

Today Jake had OT and it seemed like she had mostly negative things to say. She wasn't saying anything in a mean way, just a way that made it sound like Jake has SO FAR to go and it made me feel so discouraged because I know she's right. Here's the list...

1. Jake is not supposed to be putting so many things in his mouth all the time at this age anymore so she said he's not able to focus on things around him when he puts things in his mouth.
2. His arms and hands are very sensitive so he won't let you direct them to help him learn to do certain activities or put pressure on them.
3. His legs and feet are also sensitive so he's not putting weight through them like he should.
4. He's not interested in clapping, waving, or anything of the sort.
5. He hates learning to crawl and he doesn't want to lift up his head for it.
6. He's not interested in many toys kids his age should be interested in, or activities that they usually do. He doesn't care about shape sorters, dry beans in a bowl, etc.
7. His left hand likes to stay closed more than the right which is hindering his hand skills with toys and food.
8. He doesn't know how/ doesn't get how to pull things very well... handkerchiefs out of a can, etc. do not interest him at all.

Those are just the ones I can think of off the top of my head. It just feels like the list gets longer and longer every day. That's seriously about half of everything I have to work on with him every day! And does it always get done? I'll admit, no. So when his OT comes and she's telling me all this stuff that he's not doing or is doing that concerns her, it just makes me feel horrible because I know it's my fault for not being as on top of things as I should. Sometimes I get complacent and I feel like I can just let him lay on the ground for a minute and play, but really I shouldn't. Every second of the day should be structured. I'm considering making myself a daily schedule so that I remember to do everything.

(This is how we try to get him to learn to use his legs to crawl)

It's just so exhausting! Every day is fighting, fighting, fighting until one or both of us is resolved to tears. Today it was both of us. I just had the realization that no matter how much I do for him it will never be enough. There will always be something more I could have done or something more I can do and I just feel extremely alone in it. It's so exhausting being in charge of your baby's development anyway, let alone if they have special needs and I know I'm the only one who is with him enough to know how to help him. There are those of you out there who I think of in times like these because I know you know how I feel: Cathy Layman, Julia Baker, Shannon Daniels, and Stephanie Jones to name a few. Being your child's advocate, voice, and main therapist can get discouraging. I start feeling so guilty because I know I must not be doing enough if he is still so sensitive to weight-bearing, and all the other things.

I know what the human brain can do in children, how it can repair itself, and so it's up to me to help him make those connections and catch up! Jake IS pretty smart. He can catch onto things, but the fact that it's taking him a long time just makes me feel so down sometimes. Almost every day I think of my friends and family who can just set their child down and let them play without having to help them do simple things, who can just watch their child learn to crawl and walk without having to move their arms and legs for them or do work on a yoga ball every day to hopefully get them to move. With the movement comes cognitive development and so the two go hand in hand. It's hard to see my baby behind and not understanding things he should be understanding and just hoping that if I work with him hours every day he'll get it.

So yeah, usually when I write about therapy it will be about the good and exciting things that are happening. But today was just a day when it felt like we went a football field in the wrong direction and I'm so exhausted! Let's just hope next week is better :)

36 weeks: My Last Week of Pregnancy

I'm having my c-section next week! I can't wait! I'm so ready to be done being pregnant. I'm huge, hopped up on meds, and I'm tired of being in the hospital already. I guess it's time to start making my blog nice and pretty because from here on out there's going to be a lot of updating to do. Until next week it's just a waiting game though. And I don't have my camera USB cable with me here at the hospital although I have been taking pictures. So this is a picture from my phone and for now it's going to have to do until my husband can bring the USB from home.

Well, I guess I'll just go over the whole story of how I landed myself here! The details are a little blurry because this medication is disorienting and I've been on it for a week so things have tended to slip out of my mind. I have a hard time forming coherant sentences and I'm pretty sure it's going to show in my blogging, but oh well. I'll try to make it understandable!

So two Saturdays ago I woke up in the middle of the night with back pain that lasted for about two hours and I couldn't sleep. But then it went away so I just went back to bed. It happened again the next night and although I initially wondered whether it was back labor or contractions, I noticed it was right on my kidney and whenever I touched my kidney it was tender. Monday I had a dr's appointment and I mentioned it to my doctor and he said just to keep an eye on it because sometimes the kidneys can become blocked in pregnancy. Also, at the doctor Monday we found out that the baby's head is about 50 cm. If you want to know how big that is, measure your own head, you may be surprised! It's huge. Anyway, Tuesday morning the pain in my back came again and became painful enough that I was having to breath through it and so I called my doctor and they told me to come to the hospital to get it checked out. I thought that was a little excessive since I could still talk through the pain.. I didn't think it was THAT bad, but I came nevertheless. When they hooked me up to the monitor they could see that I was indeed having contractions and they started coming closer and closer. My doctor said, " Well, I can tell you now you're not going home tonight" and they put me in a room. As soon as he left my contractions started coming like 3 minutes apart, it was crazy. Apparently they were pretty strong too but to me it just felt like some pain in my kidney and honestly not even as bad as periods I've had before. Just goes to show how stupid I am, I didn't even know I was in labor! You always hear people say, oh you'll know, but I did not know at all. And I don't think I would've known unless I had been here.

So they started an IV and got me on magnesium sulfate to stop the contractions which is a muscle relaxer and pretty potent stuff. It makes you feel like you have the flu as well and you can't focus on things. I managed to read a book, but it was difficult and not very enjoyable because I just felt like I couldn't care about it or get into it. It kinda makes you feel ho hum about things... it's weird. They tried to wean me onto a pill instead so I could go home for a little while, but that didn't go over well. As soon as they dropped the medication levels my contractions and pain came back. So here I've been since Tuesday... Thankfully they've dropped my medication levels twice just so I can be a bit more comfortable. It starts feeling like you're trapped in your own body and furthermore I'm trapped in this room and not allowed to even get wheeled around the halls. I really feel for people who have to spend their lives in the hospital! Especially people who don't have family or other support. Kenny has been sleeping in a chair next to me most nights. I feel so bad for him. He's trying to keep going to school and he's doing great even though all of this is going on on the sidelines. I know it's not easy but he's really supportive and I look forward to when he comes to see me during the day.

Jake is getting so huge, he just hurts. I told the doctor "it feels like I'm having twins, seriously" and he said "well, in a way you are because your baby's head is just so big". I LOOK like I'm having twins and I know I'm way bigger than I normally would be. I'm all swollen from the medication, which is super attractive also, haha.

So the doctor says I'm in here for another week and my c section will be next Monday, Tuesday, or Wednesday: he's trying to get it scheduled. He said for sure I'm getting the vertical (or classical) c-section cut in the skin, but depending on how things look he may be able to go horizontal on my uterus, which would be awesome! Hopefully that would work but no guarantees. I know it's going to be hard to get the baby out as it is. The doctor said he's going to have forceps and a vacuum ready because he'll probably need one or both of them.

Well, that's about all. Meanwhile I'm just waiting. I can't wait to get this baby out of me even though I know the c-section is going to be difficult because he's so huge. I just can't wait to get on the road to recovery and get back to a somewhat normal life. And hopefully Jake's surgery (or surgeries) will go smooth as well. It's just hard to sit here and think and speculate~ let's get going! :)

well I think that's about all. thanks everyone for your thoughts and prayers, we love you and we think of all of you too.