Day Four: Whine? No Thanks!

What a day! Laila is definitely gaining more skills and she is definitely fighting it every step of the way! It is so exhausting watching her fight herself so much knowing that she can do these things but almost everything she has to fight, kicking and screaming before she calms down and and gets confidence. It's almost like there are two personalities in there! I'm thankful for the lessons God is teaching me through watching her though because isn't it just like our humanness to want to fight and do things our own way before we submit and figure out the there is something right there trying to teach us and help us not fall on our face but we choose to try the hard way first or we just give up altogether before reaching our potential. I have seen this in myself as well with her. I again want to say how thankful I am for all of her instructors and they way they are not only patient with Laila but also with me. They let me struggle and try and put her hand back in position and back in position and back in position and back in position and back in position and back in position and then they politely ask me if I would like to help ____ with their work while they take a turn with Laila. I know I'm part of the problem with getting frustrated too quickly and I know that is a part of my personality that is one of the reasons God gave me Laila to overcome but I'm just not getting it. Prayers in that area would be great :)

So, today I did see many many encouraging things in Laila's behavior as well. Right away in the morning before we even went I noticed how much easier it is getting to get Laila dressed. It has always been a huge struggle to get her shirt of coat on because she immediately bends her elbow and pulls her arm SOOO tight against her body. I think all the reaching for the bar and keeping her arms straight during the lying exercise as really helped that. YAY!! She also nodded her head yes to answer a question from her teacher this morning (remember again that you are blessed that you can even nod your head with ease!). Usually in the morning she is a little more quiet and looks around taking things in but by the end of class we're having to tell her to tone her large voice down. Interesting to watch her adapt to her surroundings like that.

One new thing that we worked on today during our individual program was rocking. She would draw her knees up to her chest and hold on under them. She could see how if she turned her head different ways her body would follow. She was also having to keep her head tucked to her chin which was building her neck muscles. She scooted pretty well on her back today to different stations that she had to go to and most of the day her instructor was able to solely help her walk with her ladder back chair when she needed to walk. Laila, my back says "thank you" :)

Her eating has been going good. The past three days she has finished a whole can of pediasure by mouth by the end of the day and that is so great for not having to be tied to her tube all evening since we are not doing g-tube feeds during therapy. I think not doing the feeds so she has an empty belly and then also working up a sweat and an appetite are really helping. Today they had students in the classroom so they told me I could leave during lunch time. This also helps because starting Monday they are going to try to have me just drop her off. When I got back she had eaten a whole cup of chocolate pudding and drank almost all of her milk which I'm sure she'll finish with dinner this evening like she has been doing. It's so neat that she is doing so well with this and I'm very thankful for it.

Well, now I ask for a prayers about making a decision. They really think Laila needs four weeks instead of three and have offered that she could stay for the first week of the next session to get in extra time of reinforcement. We have to talk about the finances of it and see how she does over the next week. Part of me says I should just stay because I'm already here and don't know when we could come back and the other part of me wants to be home. Hmmmm, hopefully God will make clear His plan for Laila and I!

The pictures today are from Laila sitting in the topic circle learning about shapes and sitting nicely with the blocks beside her. She stayed sitting for almost the whole time today without cheating and throwing herself back and the only reason she started was because we were sorting shapes and when she started really concentrating on it, her tone kicked in and she was so excited she tightened up her whole back and fell back. It's so funny how a little thing like me sitting next to her instead of behind her changes everything. Yesterday she throw herself back several times and today We put a mat behind her in case she did but I sat to her side and since she didn't have me there as the safety, she stayed up. Clever little one she is.....:) The other picture is of her right after we were finishing the sitting program at the end of the day. That standing is getting stronger and stronger!

Well, I'm so excited that Jack, Emma & Jackson will be her tonight and for the weekend. I look forward to doing some fun things around Grand Rapids and getting some big squeezes from my big kids. They are all doing really well at home too and that definitely makes it easier here for me knowing they are taken care of. I know Laila will be very excited too because she can't wait every night to talk to them on the phone and I know she misses them very much.

Thanks again for checking on us today and I want to leave you with a link to a video a man left in the comments to me on here. His wife is a conductor and it is a very informative video about Conductive Education. It's neat because the equipment, songs and everything are the same as what they do her in Grand Rapids. So cool! Check it out!

Click here for the video

Day Three: The Expected

Well, today there was a lot of crying. They had told me to expect it but I've gotta tell ya, I'm really not used to having a child crying, screaming in a public place and not being able to remove them from the situation until they calm down. The educators here are so good about it though. They just pretend like it's not even happening and go about what there doing making an encouraging comment every now an then. They definitely have a gift! Thank God for them because I think I'd be losing my mind!

So before I get into too big of a pity party I'm going to try to do what I did yesterday and state some positives before I state our hurdles to overcome (see, my positivity by not stating them as negatives :) I'm really trying here!

Laila......went......on.....the .....POTTY!!!! That was something I definitely did not expect. It also happen during probably the biggest fit she threw today which I'm sure God gave me as a little extra pick me up right at that moment because it was a pretty big scream fest. She's still not a big fan of the potty and I'm not sure what it is about it. We haven't come up with the exact position to have her in yet and it almost seems like it hurts her bony little bottom at first but once we can get her to relax and stop trying to scrunch her body up into a ball she can usually sit for a few minutes without crying.

At the end of the day today I think the instructor counted 22 good steps she took to get to the door. Now of course she's got two people helping her (which by the way I think we all deserve back massages!!) and she's holding on to the back of a chair but if you would've seen how much of a limp noodle she was at earlier times in the day and the past few days you would know how great that is.

We are trying different positions for her to be able to sit by herself during circle time and everything we try she find a way to cheat at it. If we put something in front of her to hold herself up on, she just lays her head on it. Today we tried something next to her on each side but then she just kept throwing herself back. She can be quite the lazy bum when she wants to be and I'm hoping that this will get better as the weeks go on and she gains a little more confidence in herself. Right now she seems to only care to do things when she is showing off for someone and otherwise she could really care less. It's hard for me not to grab on to that and let her be but I know she can do these things and I have to be her voice of reason while she's discouraging herself. BTW, thank you all for being my voice of reason so far too. I've really been able to feel the prayers and so much appreciate the texts, calls and comments. I can even tell as I'm writing this that God is helping. Just ask Jack how great my attitude was when I called him when I got out today. It's probably a good thing I took a little time before writing this :) There's nothing in particular that went wrong today, I think it's just day three, I didn't get a lot of sleep and I don't like seeing my kid be the one who doesn't listen and is the crier of the class :(

*Added in* In talking with Jenni tonight I had remembered something else we did today that needs highlighted which proves again that it's a good thing I'm documenting this because I'm so darn forgetful!! Anyway, in her individual time with her instructor today she was going to work on four point (all fours like a doggie) kneeling but she was excited about it and kept sitting up on her knees so we ended up working on sitting on her feet and then using her strength to then sit up tall on her knees. Not sure of that makes sense in words but bascially she was on her knees bringing her bottom up and down off of her feet. It isa very good thing for her to work on those muscles for all sorts of things. Just wanted to add that in bvecause it was one thing we did that was new today :) She also scooted on her back all the way through a long pop up tunnel (with help). One of her friends in class went in ahead of her and she was doing good scooting because she was trying to catch up with her to tickle her feet :)

So, I don't have the program I normally post my blog from on this laptop and I can't get the pictures to move around so I'll explain them down at the bottom here. I took a picture Laila in her laying exercise today. She has a lot of problems with having a straight body so they are trying to get her body used to that position because things like rolling require her to keep a straight arm and leg and normally when she is laying on the floor her legs are in "froggie" position and her hands are at an "L" up by her ears. Most of the time it takes quite a bit of stretching to get her to straighten out. Hopefully this helps! Our friends Jenni & Erin arrived to visit us yesterday from Minnesota and we couldn't resist the picture of the girls outside of the Dollar Tree last night with the beautiful Michigan sky! We also had a few visitors here at RMH that Laila was not super excited about but we tried a little anyway. Every Wednesday volunteers bring their trained dogs into the house to visit. We are thankful for opportunities like this for Laila to get used to dogs because hopefully when Laila turns five we will be applying for a dog from Canine Companions.

Well, I hear vomiting going on in where Laila is sleeping, guess I'll go clean that up.......tomorrow is another day...........

Day Two: Thanks for the prayers

Today was a good day. Some things were harder today and some things were not. I'll start with the positive because that's always a good attitude, right?!?

Laila did a lot better today with sitting up and being aware of her body. Several times I saw her catch herself and fix her posture while sitting at the table holding on to the bar for different activities. While I was working with her at the table yesterday I would have to keep one hand around her so I could catch her if she started to lean, then it got better where I would only have to keep a finger there just so she'd have something to feel which would signal her brain to sit up straighter and today I would say most of the time while she was at the table with a bar to hold onto I just sat in a chair next to her. Her instructor even told me that at times that I saw that she was very stable I should get up and go grab a tissue or something so that she could start to gain some independence and realize that she could do these things without me sitting there because starting next week she will be going by herself to therapy until the end of our three weeks when I will join back in for learning how to take all these new skills home with us. The other thing that was nice about leaving her for a minute was the fact that I got to take a picture today which I haven't been able to do. They keep Laila very busy with a very scheduled day (I'm in heaven:) so there's no time for pictures for me! In the picture you see above you can see the kind of table and chair she is using and the bar that I keep talking about that she hangs on to. In that picture her posture isn't the greatest but you can kind of tell what I'm talking about. You can see that they put a mirror in front of her. They are still working on body parts and today added in some skills of learning pairs so we were learning which of our body parts come in pairs. Then we did a craft where she got to glue some eyes on a small paper plate. Tomorrow we'll finish with the rest of the face.

Laila did a lot of rolling a scooting today. She also did a lot of walking and standing but that didn't go as well. She was pretty lazy when it came to the walking and standing but I have to wonder in part if that has to do with her muscles being sore. Think of yourself when you start a new workout program. Now think about that workout program being five hours long everyday and most of it consisting of muscles you never use. I'm sure her legs are very sore but, if we don't keep working them her body will never get used to these movements and she'll continue to have this soreness. With rolling, we continue to have her front, back, front, back and on and on until she gets to the place she needs to be. Continuously we are telling her to keep her arm and leg straight and telling her how she is getting closer to her destination hoping for her brain to make the connection that she can actually be mobile and in control of what and where she wants. She's been able to roll for some time now but doesn't do it very often. We need her brain to understand the connection between rolling and getting somewhere. With scooting she is lying on her back and pushing herself with her feet. She actually started doing this about six months ago but we were told not to let her. We tried to break her of it but she wouldn't stop and then after her evaluation at CLC in March they told us not to discourage it, that we could find a way to make it helpful. So, once we actually wanted Laila to do it she either decided it wasn't fun if it was permissible or she finally decided to listen to us to stop doing it and then was confused. Either way, I was pretty impressed with how well she did with it today. It is a deliberate movement where she needs to put her feet together flat on the ground, keep her knees together (which is a hard thing for her) and the push straight. Then, she walks her feet back close to her bottom again (again, easier said than done) and starts all over. It so hard not to just cheer her on with the words I'm so used to like "Come on Laila! You can do it! Go, Go, Go!" Instead I have to narrate the things she needs to be doing in an encouraging voice like "Come on Laila, you can push your feet. Push push push!!" See the difference? While encouraging, I'm helping her brain to understand her movements more. I hope so anyway!! :)

I talked yesterday about her eating and I'm going to give it a big thumbs up again today! Right when it was time for lunch Laila and I had had about enough of each other and the instructor stepped in and said she'd take over helping Laila with lunch today. When I tried, we didn't even get past me trying to get her to transform from her limp noodle posture to even sit to start. I left the room for five minutes to go to the bathroom and check my voicemail and when I came back she was taking great bites and ate almost an entire jar of baby food! Sometimes she just gets sick of her momma and again, since I said this will be an honest portrayal...... sometimes I need a break too! She was also drinking from her cup pretty well today. Last night when I was eating dinner she finished her milk that she had taken to school which means that she drank a whole nutrition drink (240ml) by mouth yesterday. That pretty exciting since she probably hasn't done that for at least four months. Also exciting because her diet consists of about 900 calories per day and she drank 240 of that by mouth. (it's 1calorie/1ml)

Another aspect of her therapy that I got to see today was a sort of tummy time activity that they do in the morning. I can't remember what they called it but after starting school, sitting in her chair learning what day it is and a few other facts, she has to stand and try to pull herself up onto the table. They help her with the movements. Once she is up there they did different activities where she had to raise up her head when they were talking about her or the toy she had in front of her. They also played catch across the room with a large ball and the kids had to turn their heads from side to side watching the ball. At first I thought Laila was just going to take the opportunity to take a little snooze and she just laid there, but then she figured out that they were talking about the book that was by her head and that it was pretty fun to watch the ball. I love when she does something like that where I think "no way is she going to do that" and then she just shows me. I do love when she proves me wrong in those situations :)

When I was talking with Jack this morning I was telling him how I think this is as much for the parents as for the children. I truly have to rewire my brain as well to help her succeed at this. I have to throw out everything I knew from teaching the other two kids and do it the way Laila needs. I need to understand it's going to take time and repetition to create new behaviors. This is especially tough because of the fact that Laila has only been with us for a little over a year. I'm not only breaking habits she and I have made but also habits from other places she has lived. I need to persevere because how am I ever supposed to expect Laila to stop giving up and thinking it's too hard if I do that? So, we move forward looking at the positive things we see so far and believe this will continue to sink in and make a difference. I'll leave you with one more positive note. Today they came in to take pictures of Laila for her progress report. They will do before and after pictures to put with her final report to see how she has improved and what we need to work on at home. When I was talking to her her instructor at the end today she told me she was very glad they came in today to take pictures because she already sees so much progress that if they even waited another day, she thought they wouldn't be accurate "before" pictures :) Two days in :)

A little encouragement from my sister from yesterday I'll share today. "Now to Him who is able to do immeasurably more than we could ask or imagine, according to His power that is at work within us, to him be the glory" Ephesians 3:20

Day One: Exhausted.

We survived our first day!! I could barely keep Laila awake for the 10 minute car ride home. I'm really glad I decided to document this not only because it's an easy way to keep you all informed in one mass place but also because we are learning so much that I feel like if I didn't sit and update this I might forget some things!

Laila did so many things today! We had circle time which consisted of singing songs, playing with dolls and learning body parts, using bean bags to find which one matches our hair color, passing a ball to friends. All of that seems like regular preschool stuff and you may be thinking "what's the big deal? why all the fuss and going away from home and paying money when she's already in preschool??" Well, you have to understand how hard it is for her to sit and well, let's just say sit for example. Sitting is something that she struggles with and it is also my goal for this time period. If I have one request it would be for her to ba able to sit and play toys, not only because it is the "normal" way rather than lying on the floor but also because it's much more sanitary. With all of the immunity issues that we have, having her face in the carpet where people forget (or refuse) to take off their shoes or where bare feet that just run outside really quick without shoes really makes for a huge environment of germs. So as I describe to you the things that she did today, keep in mind that when I say that she played at the sand table, it means she was actually standing holding herself up and playing in sand and that is a HUGE deal!

Laila also had lunch and snack with the other kids today. We had worked so hard for so many months and had reached our goal of all caloric intake being oral and then she got horribly sick this spring and we had to go back to straight g-tube feeds. So disappointing! We have seen over the past few weeks that she had been more interested in oral feeds again especially with having started preschool and having snack with the other children. Well today went extremely well. She is drinking from an open cup with handles on the side and doing really well with taking drinks and swallowing (again keep in mind that to us this is involuntary and no big deal but to Laila every drink is an accomplishment).

She had a first day of potty training. She wasn't really excited abotu it but they tell me that she'll get better about it with time. I think her bare little bottom that only ever sits with a diaper on padded seats will take some time to get used to it. I have a potty that they gave me to use back here with me as well so I can reinfoce what she learns throughout the day. While potty training isn't necessarily a huge deal to me right now, it works also on so many other skills with routine and trunk support and control.

Everywhere Laila went today around school she had to get there by working for it. Sometimes she would have to roll, sometimes she would have to walk, sometimes she had to scoot on her knees. No matter what there was no just carrying her lazy little bones :) Also keep in mind that when I say she had snack and lunch she was not in a high chair or her wheelchair. She is sitting at a table on a chair with no harness. She has a bar attached to the table in front of her and she has to hold on to that bar to stay sitting. For the first day, I think she did pretty well.

I had a conference with two of the therapists toward the end of the day today, so here is my gathering from the first day of Conductive Education. They look at Laila and see her potential. They see that she is so very cognitively aware but has a hard time controlling her body. Now to make her mind match her body. For example, when we were in circle time and I was sitting next to her trying to get her to sit up on her own it was a struggle, but when she needed a break after standing by the sand table she was able to sit up for several minutes on her own as we played with a basket of play food together. She can stand next to the sand table and play even while concentrating on the shovel but when i help her stand she can only do it for a few minutes. Her movements are sort of "accidental" right now and we need to catch her brain up to what her body can actually do. So, for everything we sing songs and explain what we are doing. I have to deliberately remember to tell Laila everything and try my hardest not to do things for her. When she needs to hold on the bar to sit up I need to tell her "use your right hand to grab on and then you will be able to sit up." Her brain needs to learn what the movements are and what their consequences will be and that things need to be done in a deliberate way.

So here's the honest truth. I do believe this will work. I also do believe it would be easier to let her sit in a wheelchair all of her life and eat from a g-tube. But, those of you who know me know that even though it might be easier it's not the way I will choose. Even though I've had other parents actually say the words "you're so mean," I don't give in to temper tantrums from any of my kids. Even though I wanted to cry most of the day today because this is both mentally and physically exhausting for both of us, I won't give up because I had already seen by the end of today that some of those connections were coming together. Even though they told me the next fews days will be even harder before it starts to get better, I will still get up and go and give it our all because Laila deserves this chance. When you think about it, easy is not usually ever better. Matthew 7:14 "But the gate is narrow and the way is difficult that leads to life, and there are few who find it."

Thanks for checking in with us :)

Our new House (for the next few weeks)

We've made it to Michigan! We drove up this afternoon after several instructions and tears given at the home front before I left. I'm sure they are going to do fine and I'm just so lucky and thankful to have and amazing husband who is willing to take on the challenge of being without me with two kids who have homework, spelling tests, bible memory, chores, reading, girl scouts and on and on. A big thank to both moms and my sister for helping make this work too!

So the story begins last fall when I ran into another mom in our town with a little one with CP. Her son is a few years older than Laila so I had a great time being able to pick her brain about what works and what doesn't. That day she told me that if there was one thing she could suggest it would be conductive education. I had, of course, never heard of it but quickly went home and found the facebook page of the center she goes to which led me to their website. After seeing the prices I wasn't sure if we'd be able to swing it. That's where the magic came in :)

After talking with Laila's current First Steps therapist about it they seemed very excited and interested. One therapist was so interested and believes in Laila so much that their family paid Laila's application fee. They do 12 days of giving at Christmas and they made Laila one of their days. Amazing! So, then came the tuition. I started talking about this opportunity with the ladies at my bible study and asking them to pray about it. One suggested that I apply for a grant through our local electric company, REMC. This company has a program called "Operation Round Up" where they round everyone's bill to the nearest dollar and then every quarter they give the money away. Turns out there were a few people on the board that had heard of Laila's story, our adoption and how much progress she has been making already and so they decided to cover her whole tuition! I just want to stop and say right here, do not ever limit God, especially when it comes to money. We've seen over and over when He calls you to something he provides. We are also staying in the Ronald McDonald house while we are here. They partner with CLC to provide rooms if they have any open. The only stipulation is that we have to pay a per night fee but it's definitely cheaper that 3 weeks in a hotel. And, by the way, when I got here today someone had already called and paid almost our whole stay. Thank you!

So as we begin this journey tomorrow, I am excited and very nervous. We've been talking about this for almost a year and so many people have said "I can't wait to see what she can do when she gets back" which is where the nervous comes in. I feel a little like we are putting a lot of expectations on this and I don't want to be disappointed but I guess time will tell. If I know one thing it is this, Laila can already do far more than any of us could've ever imagined so anything else is icing on the cake :)

Thans for checking in with us and please keep us in prayer as we start at 9am tomorrow morning. I'll try to update again tomorrow night to tell you how our first day was :)

Conductive Learning Center

Well, I have a lot of catching up to do from the last six months but that will come. For now, I'm going to try to use this blog to help keep everyone updated on our progress in Laila's therapy camp that she is going to for the next three weeks. She and I will be gone to Michigan and Jack and the other two will be on their own. While it's breaking my heart that I just tucked the older two into their beds for the last time until the end of this month, I am also nervously excited about what the next three weeks will bring us, especially for Laila. I'll try to write an update and fill you in how this trip came about tomorrow evening after we get settled in. Thanks for taking the time to care about us :)

Angie

http://conductivelearningcenter.org/

Amazing Friendship

So I blogged about my Steigenberg friends and how great they are before and here I go again!  My Jenni & Erin drove all the way down here from Minnesota to come for our adoption.  How great are they!?!  We were very sad that Dave wasn’t able to come but totally understand with starting his new ministry. 

Jenni and Erin drove down and made it straight to the court house in time for the adoption.  It was so neat to be standing there and have two of my favorite girls walk up to share this most special day with us.  They planed to go home the following Saturday but since MN got hit with a snow storm and then it came and hit us down here they HAD to stay a couple extra days!  Wooohooo!

One of the things that was very neat was that the day after the adoption Laila had a whole day of appointments down at Riley’s so Jenni was able to come with and see what our crazy life is like trying to juggle all of this and Erin was great company for Laila.  Erin is so completely sweet with Laila I could cry.  She’s always holding her hand and if she ever cries she says “you OK sweetheart???”  So cute!  I never would’ve guessed that Jenni and I would end up with girls the same age that could be best friends :)

Laila thought it was great having Erin sit in her chair with her!

On Friday we drove up to New Buffalo and met Jenni’s parents for lunch.  It was fun getting to see them again and catch up after they came to stay with us last spring.  Jenni HAD to go to the lake and touch the water.  She’s a bit of a weirdo but that’s why we make a good pair :)

Friday night Emma was part of the cheering section with the Girl Scouts for a high school basketball game so we all tagged along for the fun.

I really thought Laila would love it because she is obsessed with balls but I think maybe it was way too much for her.  She just enjoyed playing with Erin and taking it all in.

Because of the snow storm school was cancelled so we made our fun snow day schedule and had a great time.  Jenni is way more fun than me and let the kids spend about an hour taking turns doing her hair.

We also did some of the old reliable snow day activities like painting.  Laila loves to paint on the aquadoodle.

The day finally came where the roads were good enough for our friends to venture back home but while we always miss them, it’s not as hard anymore knowing they aren’t as far away.  A trip to MN for spring break is calling my name!!!