Day Six: Steps

I thought I would share this video today of Laila taking her steps from the door heading toward her chair at the beginning of the day.  She can normally do this without two people but this is what I caught on video.  Hopefully by the end of our four weeks I'll be able to take another video to compare. 

She was also very excited to be able to show off what she has learned to Papa Tom and Grandma Mary today.  They are on vacation this week so they drove up to spend the day pampering me and letting me get some adult time!



We visited a 9/11 memorial at the Cannonsburg Ski Area.  The had 3200 flags with names and biographies of the victims on them.  It was very overwhelming.  The flags were available for purchase and they purchased one that was in memory of a man who chose to stay in the building to help his quadriplegic friend co-worker  get out.



We also visited a local winery and did some sampling. I actually found a red wine that I liked so we got it. My friend Chanda will be so proud of me :)

So today was a nice day out visiting and it was a good day for Laila as well.  They said that today they were able to let her sit on the potty and leave her there without crying (or minimal crying) by herself which is kind of unbelievable to me.  I may have to stop by and peek in at potty time tomorrow to see for myself ;)  They said her stepping is getting so much better and I was able to see at the beginning of the day how good her sitting really is at the table as well.  She is now holding on to the bar with one hand and playing with blocks or some other toy with the other hand.  It's so amazing to see her brain figuring out that if she is leaning to far one way she can pull the other arm harder to correct her sitting.  I am so amazed at her eating.  The past two days she had not had to be on her g-tube at all during the day.  She is drinking at least 1.5 cans of pediasure by mouth each day and a whole jar of baby food or pudding.  The really amazing part is that her stomach is handling it.  She will drink around 100ml at a time in about a 10-20 minute period.  When she was on her g-tube she was only able to handled 160ml at the absolute most but ran over a one hour period.  She is still on her tube at night time to make up the rest of the calories and fluid she needs but it has been amazing to see how well she is doing with the rest.  I spent many days worrying about how we were going to deal with her g-tube during the day because I did not want her on it at school because I knew it would just slow her down.  Problem solved :)  more than I could ask or imagine.........

I got everything switched around at home to make arrangements for our extra week here.  Both girls had an appt at the eye doctor at Riley that week and it's usually hard to get an appointment less than three months our but they were able to change it to the very next week!  We were also picking up Laila's power chair that day and they had an opening for us to switch as well.  It's all coming together which I'm thankful for because it helps me to know we're making the right decision to stay.  Now if someone could just explain that to my precious little six year old who misses his mommy.  He was crying about it last night when Jack told him.  I think that is the hardest part of all of this.  Not just this camp but of life.  Choosing what is the most important, trying to decide what sacrifices are worth it and which are not.  I couldn't ask for a better brother and sister for Laila, they are always so understanding.  They are the ones that get put on hold a lot of the time and they do so well with it.  Since I'm gone, Emma reads me over the phone our special bedtime devotion that she and I do every night.  Last night before she even started reading to me she said, "oh mom, I think this one is going to be good for you to relate to Laila."  I love her.  I love that she has a heart for God and a heart for her sister and the discernment to relate His word to our lives.  How amazing to have an almost nine year old teaching me. 

I just want to say again how much I appreciate those of you that have been faithful to pray for us and are reading this blog.  As I watch the number of readers, check out the different places that you are logging on from and get a few comments  it really does help me to keep going.  I even said to Jack over the weekend while I was having a little pity party and wanting to go home, "I wish I didn't start keeping track on that stupid blog because now I definitely can't quit because everyone will know!"  So I feel better about it now and you reading is helping me to keep going.  Thank you!

Day Five: Alone Time

Laila stayed at class all by herself today!  She woke up in a great mood today, and no vomit I might add.  Of course when I asked her if she wanted to go she told me no but once we got there she was all smiles and excitement for her teachers :)  They let the kids bring a little something everyday for a sort of show-and-tell and today she wanted to bring her Elmo balloon that she got at the Dollar Tree the other day.  I was worried it would be distracting because it you know Laila you know if there is a ball or a balloon in eyesight all you hear is "ball, ball, ball, ball, ball....."  and now sometimes "bomb" which is her way of trying to say balloon correctly instead of ball.  I guess we better watch out when we take her on her first airplane!!

So, I had been so focused on her being by herself today and I got back in my car and thought, "huh, what do I do now?!?"  Being a mom for close to nine years now I'm not sure what to do with myself when there are no children around.  Laila had started preschool back home in August but that was three hours which were usually filled up with errands or housework.  Here I don't have much of that so I called a few friends that I haven't been able to chat with since I've been here, stopped by the Christian bookstore looking for a study to do, which I didn't find anything:( and then I came back to the house.  I watched some Beth Moore online, form Grey's Anatomy re-runs on Netflix and cleaned my room.  I got a little excited when I heard a lady vacuuming in the hallway so I asked to borrow it for my room.  I'm a nerd.

I got to school a little early to get Laila because I wanted to see how she was doing.  She was standing at the bar with her instructor fussing a bit but then yelling "I STAND UP!" in her very proud voice :)  They said she did well today and her fits had lessened quite a bit without me there.  They said it really helps the kids to not have someone right there, like their personal audience when they are frustrated.  They play it up when someone is there but tend to do better without.  They said she did fuss about the potty again but they were able to calm her down quicker.  Again, every inch counts so I got to see her walk to the door from me to be able to take her home and she seemed like her steps were even more deliberate today.  She's a long way from walking but it's good to see her be able to do the movements with help.

So at the end of the school day I went to talk with the CLC office manager about the cost for the extra week.  Ouch.   I guess I didn't realized truly how much this costs since we got the REMC grant to pay Laila's tuition.  That final week would actually only be four days and the cost is almost the same as one month of schooling for Emma & Jackson at DMC.  So I called Jack and we talked about the cost of it and how that would be one more whole week at the Ronald McDonald house at $25/night and more food and more gas money for one of us coming back and forth on the weekend but then we talked about how much God has blessed us with so far and how we wouldn't want to miss out on what could be another pivotal four days for Laila;.  We kept going back and forth and decided that we would table the discussion and both take some time to pray about it and then talk later tonight.  Well, only a few minutes later Jack sent me a text and said that his boss, who had no idea and hadn't heard his conversation, walked up to him and handed him a personal check for $100 saying he thought we might need it for something.  I guess there's our answer.  When we need, God will provide and if this is something He wants for Laila, we will make a way.  I just have to say I am very thankful that their are specialized programs for these kids but it makes me so sad how expensive they can be and how it's unfortunate for those that don't get to participate because of that hardship.  Somehow it works out though if it's what is supposed to be.  CLC does a lot of fundraising to defray the cost of tuition for families and I know it is a great deal cheaper for MI residents so they must get some sort of funding only from local people.  Either way, we're going to go ahead with that last week knowing God will provide because we know He will.  Thanks for your prayers!

So for those of you that only get to see that little smiley face girl, here's what momma gets after a hard day at school.  An over tired girl who's fighting taking a nap :(

Family Visit #1

Laila and I were so very excited on Friday night when Jack, Emma & Jackson finally got here!  It was only four days apart but we were definitely missing them!  We had lots of fun time together as a family. It was also nice to be able to show Jack a few of the things Laila had been working on.  She of course cried and refused the whole time.  Although I would rather she try harder and really show him what she can do, it was nice to be able to have him see how frustrating this can be.  Protective Daddy isn't so sure about this new therapy that makes his little one cry but is willing to stick it out :)

E&J were so excited to be staying in a Ronald McDonald house!  So excited in fact, that when we asked them on Saturday if they would like to go to the zoo or something fun they said they just wanted to stay here!  We did eventually end up going out exploring.  I took them over to CLC so they could see where it is but since it was a Saturday afternoon there was no one there so we couldn't go in.  I'm hoping Jack can come up one week day to be able to go there with Laila so I don't have to try to explain everything to him when we get home to be able to continue working with her. 

I got a lovely little pack of goodies from my mom which included gift cards a some cash so that we would be able to have some fun as a family on the weekends here so we went to Applebees for lunch and then headed over to the Fredrik Meijer Gardens.  We pretty much stuck to the children's part but spent a couple hours there and had a perfect day for it.

See, she can use those skills of standing when she puts her mind to it :)

Jackson playing with the Niagra Falls :)

They really liked this Great Lakes water area

That horse sculpture was crazy HUGE!

They had a great time rolling down this fun hill.  Laila even did it but wouldn't leave her mouth closed and kept eating grass!

 We got a coupon from Applebees for them movie Rio so we decided to order Jet's pizza (mmmmm!) and just have a family night back at RMH.  It was really nice :)

This morning we packed up and drove down to Kalamazoo to go visit our old church and head to Gull Meadow Farms for some apple picking, cider and donuts.  It's been really fun being able to do some of these things that we used to do when we lived up here and I've been cracking up at the things I forgot about like crazy MI no left turns and shopping at Meijer again instead of WalMart.  Silly little things but fond memories of our seven years up here.

My Loves



My Life



So, we're ready to start another week I think.  Emma & I were talking on the phone a few minutes ago and we're kind of amazed we already have one week down.  I'm sure when we're done it will seem like no time. I'm again, nervous and excited for what this week will bring.  I've already seen so much change and I need to remember that when it is hard.  We saw Laila taking steps this weekend so much better than we have ever seen.  We were amazed by the way she was able to stand and play in the water.  I've been amazed and incredibly thankful for my amazing, wonderful, helpful, handsome husband and the way he handles things at home.  I was able to get some great, great insight from my dear friend Gena this morning at church that I believe should be the theme verse for conductive education.  I'll leave you with that below.  Just a fun God thing too, she was just encouraging me with verse 11 but then we read on to 12 &13 amazed.

Hebrews 12:11-13

Now all discipline seems painful at the time, not joyful.  But later it produces the fruit of peace and righteousness for those trained by it.  Therefore, strengthen your listless hands and your weak knees and make straight paths for your feet, so that what is lame may not be put out of joint but be healed.



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 :)