Day Seventeen: Overwhelmed

Overwhelmed in a good way.  I got back to the house a few minutes ago and laid Laila down for a nap.  I decided to go to the office to settle our bill since we'll be checking out tomorrow and I want to be able to get home as soon as possible :)  When I got into the office to tell them, the ladies I haven gotten to know in there over the past several weeks just got a smile on their face.  They said people have been calling and making payments on our room here and basically 75% of it was covered and all of them wanted to remain anonymous.  I can't stop crying about it.  This has been an absolutely amazing journey and I can't even begin to explain the amazing blessings I have seen and received through all of this.  The calls, texts, comments, cards, help with our two older children at home, meals, prayers and of course financial support have been....... overwhelming.  Between the REMC grant and the generosity of friends and family, the CLC tuition was completely covered and now this housing....yep, I'm still crying.  God is so good and all of your are so good for showing love to us.

OK, now on to our day.  I got to stay in the classroom with Laila for the whole morning today.  It is amazing to see firsthand the things she is doing so much better.  I think they are so smart to have us come at the beginning and at the end and leave us a little in the dark in the in between.  Makes for a better awe effect ;)  Her sitting is so much nicer, she's not fighting the challenge anymore but embracing it and gaining so much more strength and knowledge.  She's doing much better on her tummy during the lying program and lifting her head, her rolling is getting so good as well.   She still needs some help getting to her tummy but not necessarily because she can't do it but because she's not too fond of tummy time but that will come with more time. So, all of these things in addition to everything that I listed yesterday leave me a true believer in Conductive Education.  I mean seriously, did you watch the video that I posted of her taking steps?!?!  I laid in bed last night watching it over and over and I can't believe this is the same girl.  Someone had described it to me as a miracle.  I do believe I have seen miracles occur in Laila but not without hard work and persistence.  Sometimes we just want to have quick results with no work but we all know those never last.  I believe these things will last with Laila and continue to develop more and more. I'd like to share this little excerpt from the bible study I've been doing here for those that didn't see it on my facebook.

"Those waiting on a life of continuous miracles as a sign of God's anointing will lead a frustrated existence as they try to manipulate God. On the contrary, the anointed life engages daily and normal activities in a supernatural way. When you have patience in your mothering, holiness in your singleness, gentleness in your response, contentment in your circumstances, and empowerment in the face of your challenges, you are experiencing the greatest miracle of all: God's presence appearing in your life."  -Priscilla Shirer

Laila is a miracle.  Emma is a miracle.  Jackson is a miracle.  You are a miracle.  We have to stop trying to find the quick fix, giant sign or something better than what we have.  Each of us everyday can be a miracle to ourselves, our families and each other.  I don't know who you all are, but thank you for being my miracle.

Walking

Check this girl out :)

Day Sixteen: Connections

I really hate writing blogs without pictures but I just haven't been able get any of Laila in action lately.  I also didn't know until our parent meeting yesterday that I hadn't been supposed to be taking pictures in the classroom.  Oops!!  I guess Laila did have a little photo session at school today for some of her before and after for her final report.  I can't believe I'm saying that already!  We only have two more days left.  I'm thankful that those of you reading have been patient with my emotional roller coaster that I've gone through with this whole process.  I feel like some days I've believed in this therapy and some days I haven't been so sure but now getting to the end of it I wish it wasn't over because I know it's working.

One of the big things I see that is completely amazing is that she is making more neurological connections.  It has been a completely blessing to be able to witness this firsthand.  Remember back at the beginning when I said I felt like all I say was "hold on to the bar, hold on to the bar, hold on to the bar" and I would be physically placing her hand back on the bar to try to get her brain to understand wheat that meant?  Well, she's made the connection and now does it on her own.  I only have to say it now and while she's always known in her mind what it meant, now she can actually connect her mind to her motion and do it.  She also is doing so much better at the potty and similarly when I tell her to put her feet back on the ground when she draws them up she understands, thinks and does it.  Not to say that our stubborn little one who like to rebels doesn't still defy when she's mad but she's figuring out how to fix it.  She is getting so much better also at knowing that I will not put her in her wheelchair without getting six good steps out of her first.  She's stopped going limp and just gets the steps over with so she can sit down.  That stiff right leg of hers is getting so much better at being able to bend up before stepping too.  Can't remember if I said this the other day but I've seen so much at how she has to have a balance.  She can get so excited and concentrate so much that she tenses everything up, trying so hard to move that she actually can't  That is getting better too.

Tomorrow I get to be in the classroom again and I'm excited and nervous all at the same time.  I can't wait to get to work on these things with her again and be part of the classroom activities.  I'm hoping to be able to soak it all up and retain it to have a good grasp when we go home.  I'm also nervous about teaching some of these things to her teachers and therapists back home and trying to find a plan to implement them there but I'm sure we'll all figure it out together.  One of the greatest blessings is that Jack is able to fly up with a friend on Friday and spend the day in the classroom with us.  I can tell someone all day long about what we do but to actually be able to be there and see it firsthand makes me feel so much better about being a team and doing these things together at home.  I'm also excited that I don't have to pack everything up and drive home by myself Friday.  I do love a good car ride with my hubby :)

I wanted to share a little perspective that I got on Monday when I was home.  My sister teaches aerobics and I decided to go to her class.  I took Laila with me because honestly how much trouble can she get into ;)  As I watched my sister teach class with one broken arm I started to think about dedication and hard work.  She could take the time off and heal but she doesn't.  She has this job of course to make a little extra money but she's told me before that it's mostly for accountability to be able to stay fit.  While it's hard sometimes (especially with a broken arm!!!) she stays at it to stay healthy and be a good example of that to her children.  Half way through the class I took Laila out of her wheelchair (making her stand up first of course!) and I laid her on the floor and put her baby and her Elmo book about three feet away from her so she would have to work at getting to them by rolling or scooting.  As I cursed my sister for one more set of reps lifting our legs with a weight under our knee I realized a new perspective on how hard things are for Laila.  I have a perfectly useful body and whine and complain about exercise and how hard it is but then expect Laila to be perfect at what she's trying to do.  I have the ability and brain connection but don't use it because it's hard sometimes.  I watch that precious little one fight moving tiny inches at a time but over that last half hour of class she made it those few feet to her precious Elmo book.  I'm sure everything she does feels like there is a weight on top of her arms and legs and she making huge strides fighting for every inch.  Just another lesson learned in my life taught by this little three year old :)  CLC was picked as a charity partner for the Fifthe Third charity walk/run in May and I just may think about getting myself in shape to be able to do that........ like my non-comittment to that :)  Let me know if you'd like to join me!

I was able to spend the morning while Laila was in school catching up with my friend Lisa from Kalamazoo and snuggle her sweet little girl Reese today.  Thanks for meeting me Lisa!

Day Fifteen: Back in the potty

Here's my Laila back in her bedroom at RMH ;)

She had lost the cough for the weekend but it came back last night just in time for her to vomit in the car on the way back to GR.  Woohoo!  So back to some extra breathing treatments for her.  I do have to say though that last week when she got the cough and started to get sick it was the first time ever since she's lived with us that she got better on her own!  I credit that as one more thing that conductive education does for you.  Her body is so much stronger already and one of the reason that she was always sick was because she didn't have the strength to cough good enough to clear out her lungs.  Now that she's learning the proper way to sit and stand and has more time of the day where she isn't a lump in an enabling wheelchair, she's able to get better coughs.  That in itself would be a reason to be here. 

As I stated in the last entry, being home over the weekend was definitely different.  At first I focused on the fact that she isn't sitting up but then as time went on, and especially when we were at church on Sunday morning, people kept commenting on how different Laila looked.  She sits straighter in her wheelchair, she loved showing off how much better she is getting at stepping.  Yes, there are still those times when she's sitting on your lap and she's so hard to hold because her trunk support is still poor but I'm learning way to position her better so she has to do some work.  It's amazing the things that have gradually changed that people noticed while we were home that I didn't see as much.  I think it is also harder for me because I see all that she can do in the classroom and how great that is and then the day to day stuff at home doesn't seem as significant to me.  I'm thankful for all the encouragement, it helps me gain perspective.  Even our pharmacist was asking me about things before we left town last night and I love the reaction that people give when I say how she is potty training and working on walking and every time I have to describe it again it makes me have a better focus and realize just how far she has come.  I have to really focus on each day individually and make it the most it can be and then start again the next day without the memory of yesterday or the expectations of tomorrow; just today.  (thanks Melissa!)

Since they let us fit in this extra week we were able to meet some new parents because today started a new session.  There are quite a few parents from out of town this time and one grandmother and grandson are even staying here at RMH too.  It is so funny how differently you look at things when they are not so intimidatingly new.  The parent meeting this morning was so much more enjoyable now that I know a little bit about what they are doing.  I think I'm feeling the CE addiction these days.  I'm seeing all these kids that are doing so much and I want that for Laila too.  I want to give her the opportunity to change the world and I believe her story can.  I always have to remember where she started and the fact that she may be behind even some other kids her age, but she pretty much lost those first 20 months of her life until she got to Heidi and even then spent most of that time trying to regain strength to live.  If there are any new readers that don't know her story check it out here.

I'll leave you with an exciting and slightly gross ending....... Laila had a little poop on the potty yesterday!  The most exciting thing is that it was at home.  She did pretty well at home which was a big milestone after being gone for so long.  So glad you want to know ALL our business ;)

Day Fourteen: Another Day

Sorry this is a day late but I remember now why I’ve been so good a blogging while I’ve been gone:  I’m a busy woman at home!!

Yesterday seemed to be good but I didn’t hear too much about how things went at school.  We had another good potty experience at the beginning of class.  She seemed a little sluggish on her walk out to me in the hallway but did OK.

We left straight from school to drive the three hours to come home for the weekend.  I am very glad that we did decide to do the extra week because I feel like she had just started to come back around to trying and really grasping some of the stuff she was learning so it’ll be good.  I want to say a HUGE thank you to those of you who offered to help us out with the tuition for next week.  It’s amazing to see how many people care and want to see Laila succeed.

I have to be honest and say that being home is definitely different.  When we’re up in Michigan it’s all about Laila and we can focus on the things we need to work on and she gets everything she needs.  Now being home can be a different story and we’re going have to try to implement this into our daily lives.  I have two other children and lots of demands on my time.  Just looking at the week when we come home for good we have appointments in LaPorte, two days in Indy, I have to lead hymns at the nursing home and run a meeting for the parent teacher conference committee which I’m the chairperson of. 

I have a meeting with the director next week and they have several families that come from out of state so I’m sure they have a good plan for me on how to do this.  I had a brief conversation with her this past week and she told me that coming home would be hard.  Laila knows now that she has to do these things in Michigan but it’s going to take a whole other set of training and stages to overcome to get her to realize that it’s going to happen at home too.  She’s used to home being something different where she doesn’t have to be responsible for her own body and actually use her muscles.  So, since she said that I figured we better start already this weekend with a bit of a new routine so she would know that now that she’s learned these things they don’t stop at home.  I was also told not to try to change too much right away or we’d both end up frustrated and quit all together.  I’ve decided to do the potty with her a few times a day, she has to take at least six steps to get to her wheelchair any time she’s going to go in it and she has to shift her weight and stand up in her wheelchair before I will pick her up.  These were things I had started in MI as well so she’s starting to get used to it.  She still doesn’t enjoy the potty much at all outside of school but since I know she can do it, we’ll work till she gets it.  I also had a worse attitude about not really caring about her using the potty but after having lunch with some of the other moms they told me I’ll think it’s not a big deal now and then regret it because the older they get the harder mentally and physically it is for both mom and child.  I’m grateful to be able to talk to them and learn from their experience.

We stopped and Laila got some love from GG before we got all the way home.

So glad to be home with my big kids!

Laila was excited to be in her bed instead of a bathroom!  :)

I’d like to ask for your prayers for me to change my image of the way that I think things should be.  It’s very hard for me to be home and see Laila seemingly exactly the same.  I know it’s not true and she has learned a ton and will continue to learn but my one goal was for her to be able to sit up and we’re not even close to that right now.  To be home and see her laying on the carpet to play with toys breaks my heart.  I know God has big plans for her and I know I need to readjust my thinking but I really thought I was setting the bar low in my expectation so I wouldn’t be disappointed.  Anyway, have a wonderful weekend and I will check in again on Tuesday after she goes back to class again.  They have Monday off because it’s the start of a new session.

Day Thirteen: Kicked Out

So this one is going to be short and sweet today because I have developed a terrible migraine since I picked up Laila today. 

No, she did not get kicked out of school today but I sure got your attention didn't I?!?!  Ha!  No, I was the one who got kicked out today.  I always arrive around fifteen minutes early to pick up Laila and participate a little at the end.  Today when I showed up as soon as a stepped in the classroom I got escorted right back out.  They said Laila doesn't do as well when there is more than one person there with their attention on her.  While at first I was offended, they are actually probably right.  She loves to play it up and see who she can get to give in and help her.  While, I'm not a person that usually does that I will respect that.  It was just kinda of weird.  I'm chalking it up to her foreign culture :)

So that being said, I didn't get to see much today so I don't have a lot to tell.  I was hoping to get a video of her walking today on her way out of the classroom but camera in hand, I didn't get to do it.  This morning when I dropped her off we had another tearless potty experience and she actually had a few dribbles in there so she got the bravo song which was fun.  She also seems to have gotten her appetite back a little too.  Thanks for he prayers for her sickness because it doesn't seem to be getting worse and she's not coughing as much.  One of the other kids today had some crazy snot going on and lots of coughing & sneezing.  Hoping that doesn't come our way.

On a non-therapy side note we got a new feeding pump today which I'm super excited about.  Why you may ask?  Well, for months and months we have been doing a night feed with Laila where it ends between three and four in the morning and one of us has to get up and go turn the pump off because it beeps that the dose is done.  Well this pump has volume control!!  No more getting up!  It will just flash "dose done" until we get up in the morning and turn it off.  It's the little things in life....... :)

Also, we're leaving straight from school tomorrow to go home for the weekend!  Yay!!  Anyway, so that means my post for tomorrow probably won't be coming until in the evening.  I'm stopping on my way home to see my grandma that has been in and out of the hospital since we got here and is now in rehab.  Please keep her in your prayers as she's scared and being in a nursing home (only for rehab) is a new thing for her.  Pray for my mom as well because it's a lot to deal with and hard for her as well.

Day Twelve: Fantastic

I do have to say that today was my favorite day by far.  I went in with Laila in the morning and she had been playing with a little cell phone of Emma's that we found in her diaper bag so I let her bring it to school.  She did not shed one tear while being on the potty when we got there!  She didn't go but it was so nice to see her be able to sit the whole time withoutgoing through any of her cycles of getting frustrated and giving up.  Ok, Ok I believe the teachers now when they say it is possible.  She was even taking one hand off the bar to play with the cell phone and was still not losing her balance (too much) and getting bad.  Then we got her up to the table for the beginning songs and activities and she sat up.  Now mind you the past week or so she has just laid her head down.  Well, here's proof!

I think the best part about it is that I am able to be excited about it but not be broken down tomorrow if I go in and she's not doing it.  I'm learning to be excited for today and move on to whatever challenge tomorrow brings.  I had lunch with a couple other parents today and we were all talking about how conductive education is just as much training for the parents.  It has been so hard for me too!  I see her do these things and I'm upset when she can't do it the next day.  Go back and read the comment from yesterday from my friend Tara who is also a therapist.  She explained it well on how these kids learn and just because they can do it once or a few times, we have to give them time to master the skill.  It was so nice to be able to talk about that with the other parents today.  I also got a different perspective from them about how sometimes being the one from far away is good.  Laila is getting complete attention and intensive therapy right now and where if we lived here and did this all the time she might only go two days a week or something like that where she's getting a huge dose of learning this way.  Never thought of it that way. 

She also did pretty good with her holding and keeping her head up at lunch today as well.  I stopped in for a minute before my lunch with the parents.

Laila loves her Miss Julie

 I had a very special visitor today as well.  My friend Julie drove up to visit us for the day.  It was so great for her to be able to see Laila in action today.  She's so very special to me because she also had a son with special needs.  I'm blessed to have a few of those friends in my life and I'm very thankful for all of them because I don't think anyone else quite understands this life the way they do.  I love finding all these things that God gave and took away for me to be able to handle all of this.  The extra special thing about Julie is that our childrem were at the same hospital together so not only does she know the frustration of special needs but she also can keep up with all my medical lingo.  It wasn't weird at all having her with me at the parent lunch today because she could also talk about things that happen with Canaan.  While it's hard for her because our precious Canaan only lived nine months, she still wants to be a big part of Laila's life and share this journey with us.  She is amazing.  Julie also had to come and check out this "D" that has a crush on Laila because Canaan and Laila were soul mates destined for marriage so now Julie must approve of any other suitors :)

So silly Laila in the picture above is trying out the "H'air from the letter box because this week they are working on the letter H.  I haven't said too much about the stuff that they do besides all the motor skills.  I'm always talking about the walking, potty, eating and sitting but I wanted to make sure you know that all of this is done throughout a day of school setting.  Every morning they sing the good morning song and talk about what month and day it is.  They do all of these things throughout the day that you would normally see happening at a school.  So while conductive ed is about making those connections in the brain to coordinate movements, it's also about doing those things a setting just like any other child would.

So, today was not too terribly different from the other days but I say fantastic because I'm rejoicing in my daughters accomplishments as they come and going to try to be proud of her every step of the way :)

I also wanted to share with you a picture of my gorgeous new nephews!  Welcome Dean Thomas and Logan William to the Hamstra family!!  They were born this morning and everyone is doing great.  Special kudos to my amazing sister Brooke for carrying around almost 13 pounds of baby in there and looking fabulous.  Love you sis!!  Congratulations Kevin & Brooke!!

Day 11: Take It Easy

Well, I was in denial yesterday but it's true; Laila's getting sick.  She started coughing yesterday afternoon and that's never a good sign.  For her a cough could be a cold, constipation, a UTI, bronchitis, ear infection, who knows.  The nice thing is that the signs of any of these things used to be vomit but it starts with a cough now which is nicer.  The cough usually brings vomit (like all over the floor in our room this morning) but at least I can try to treat the cough.  She fought an ear infection for about a month before we came and was on antibiotics for the first 10 days we were here but now the cough.  Here's the bigger problem:  I ran out of one of her nebulizer medications this morning.  I thought I had for sure counted everything out for all the days we're here but we're out.  Jack found half a box sitting in her room so it must have fallen out.  So sick with a cough, no pulmicort and the pharmacies here don't take her insurance.  I thought I found one that would but the phone number wasn't working and when I googled them there was a bunch of articles about them having big scandal and being investigated for re shelving returned meds.  No thanks!  So then I called my favorite pharmacists at DeMotte Walgreens (who I LOVE) to see how much just one box would be for me to pay for it up here and it is $175!!  Keep in mind that's just one box and she usually gets three a month.  Thank the Lord for insurance!  So, the solution...... my mom to the rescue AGAIN!  She has agreed to meet me half way to bring me the medicine.  Seems so silly when we'll be home Friday afternoon but lungs issues really escalate quickly with Laila because of her poor muscle control for good coughs and because since she was such an early preemie her lungs are still damaged and underdeveloped.  I don't want to take any chances.  I may even see if she can been seen by her pediatrician while we're home Saturday just to be safe so we can finish out with a good week next week.  Funny because I've never been a mom to rush my kiddos to the doctor until Laila came along.  Everything is so different with her.

So she did still go to her class today.  If we kept her out every time she was sick she'd never go and most of the time it's not something someone else would catch it's just her poor immune system.  They said she did do good today despite some coughing.  She wasn't really interested in eating and drinking which didn't surprise me but they did say her sitting was a little better today.  We got there early enough that she was able to sit on the potty for me this morning.  They say she is doing better but her screaming fit with me seemed otherwise.  I'm guessing she does better for them but is testing me.  We'll have to work through it.

The program director pulled me aside this morning to ask how I was feeling about the program.  I told her that I am somewhat frustrated because I see that Laila can do these things but is choosing not to.  She said that is not really the case.  Laila has seen that she can do these things and her brain knows it and her body can do it but the two don't know how to work together.  I wish I had a picture to put up here of her head CT from June.  It's quite remarkable to look at and see how much is dark on there, basically damaged and dead.  I sometimes have a hard time seeing that in her.  I guess as her mother I don't see a damaged, disabled girl.  I see Laila.  I see what she can be and how completely amazing she is.  But, as I said the other day, when I do see those things it makes me want more.  I look past the amazing fact that she can even function with all that damage and I want more.  I want more communication for my daughter.  Do you know what a miracle it is that she was able to tell her teachers today that she was hot and wanted to change her shirt?  A miracle!  And I want more of that.  I want to hear her hopes, dreams and most of all her frustrations.  As I had my special evening talk with Emma last night and she was telling me some struggles she is having in school, I'm so thankful that she can do that and that she chooses to talk to me about it.  I wanted that with Jackson & Laila too.  I believe it will come but have have to have a little of that stupid dirty word.....patience.  ugh.  So the director was saying that this is not going to happen overnight.  Now the connection has to be made between the brain and the body.  She has to figure out that putting her feet on the floor to hold some of that weight will help take pressure off her bottom when she sits on the potty.  It's really uncomfortable to sit on a toilet with your knees drawn up to your chest like she does when she won't relax.  (I'm giggling to think how many of you might try it!  ha!)  But, if I can continue to tell her brain to relax and put her feet flat, one day her brain will make that connection and understand.  Ah, consistency.  So she assured me that we will create a plan to help us succeed at home when we meet next week.  It made me feel better :)

They also said today that in her individual program she did some really good four point kneeling.  She was even able to lift one hand, shift her weight and play with a pianos.  Stacy Webb, if you're reading - all those timed workouts are paying off :)  I was also able to talk with another mom today who's child seems so far along and she told me again that he struggled at the beginning.  It really helps me to be able to hear that so I know that if we stick this out it won't be in vain.  They have a parent's group lunch scheduled tomorrow so I'm really looking forward to that to be able to do some networking.

I had a very encouraging talk with my brother-in-law Chad today as well.  All this alone time kind of stinks and he has been away from my sister and his kids on and off for a couple of months now with a new position at his job so we chatted about that.  We both know that God has led us to these circumstances for this time but missing our family and being alone is hard.  It's also hard having the unknown of what's to come from all of this.  We figured out our blessings and our calling and our lack of control over a life devoted to Christ.  Anyway, it's just another thing God has placed to encourage me and I'm thankful for that.

Well, I'm gonna wrap things up here and hit the road soon to meet my amazing, generous, wonderful mother for dinner!  Yay!!

ps - Say a little prayer for my precious nephews who will be born tomorrow morning.  We're so excited for Brooke and Kevin and can't wait to get to see their little faces and find out their names!!

Day Ten: Over the Hump

It was yucky and rainy here today so we had to cover up Laila's pretty new toe nails but it was exciting for her to finally wear her super cute clearance Converse we got a while back :)

They said Laila had a good day today.  I did get to see her sit on the potty this morning because we got their early enough for her to try.  She didn't go but I did get to see that she is being more compliant.  It's funny because if she is distracted and not thinking about it she's fine but then she'll cry again.  I'm sure it has to do with her just relaxing.  When she tenses up it gets uncomfortable.  She'll get there I'm sure.  She did pretty good with eating today too.  Over the weekend I found yogurt that has 190 calories per serving so I snagged that up!  I never thought I'd be looking for foods with the most calories in them but I like to make what she actually takes by mouth count so there I sit in the baby food and yogurt aisles looking at every container looking for that jackpot one that has like 180 calories in a four ounce jar.  Craziness!

There is a little boy "D" (don't want to use his name) that seems to have a little bit of a crush on Laila :)  This is a super fun thing because this doesn't happen every day for a girl like her.  He's five and is actually one of the most advanced kids in the class.  He has been asking to be paired up with Laila during their individual programs but that's probably hard to do for them with the girl who is the least experienced with the boy who is the most advanced but I guess today they let them.  Well, they said today she did the best scooting on her back and rolling that she has done so far.  When scooting she was following directions and drawing her knees up and then pushing and drawing them back up.  They said she also seems to be understanding a little more that she can use rolling to get where she wants to go.  She's been able to roll for a very long time but never does it because she doesn't particularly like being on her tummy so she just doesn't do it at all.  If she can continue to realize that she can get places and doesn't have to just stay on her stomach I think this one could start getting into some real three year old mischief.  While to some that's annoying, I would delight in that.  I really think if she could get over some issues like that and have her own mobility, a lot of other things could click in her mind.  She needs confidence in herself.

So, we're on the other side of the hill now, racing toward the end of this journey.  I was able to tell the office today that we didn't need our big room anymore because there will be no more overnight guests.  I moved into a smaller room while Laila was at school.  We're back in one of the room that has just been renovated so I'm excited to take a bath in the nice deep new tub and be able to play Elmo for Laila on the actual TV instead of the laptop.  There is also a blood center right next to the RMH here so I went over and gave blood today.  I was sitting down to my bible study and decided that I might as well be giving blood while I do it.  Made my time double productive.  I love that! 

I wanted to let you know too that I have never seen that family of the little boy with the brain tumor again.  I'm not sure what happen, I only saw them that one morning and that was it.  I hope everything turned out OK.

Thanks again for checking in with us :)

Family Visit #2

Friday came around and I was really getting pretty homesick so I decided I needed to do something normal.  I had planned from the beginning to volunteer here at the Ronald McDonald House during my stay so I figured it was time to get to it!  In an effort to volunteer and feel more like myself I decided to cook dinner for the house guests.  I had originally planned to make Swedish meatballs and rice but then someone else came and made dinner Thursday night and made something similar so I went for the old "brinner" as my friend Ellen likes to call it; breakfast for dinner.  I figured that most of the residents here don't really get a good breakfast because they get up and go to the hospital right away or to their therapy centers or whatever.  I was pleasantly surprised at how excited so many were.

One thing that I forget about how lucky I am to have Jack is that normally when I cook he cleans.  We made a deal before we were married that he would do the dishes and I would do all the other chores around the house.  My how I was missing him as I was cleaning up from cooking all of that.  Then, to my surprise I heard a little voice giggling behind me and it was EMMA!!  Jack surprised me by working long hours and left work early to be able to get here earlier Friday evening since last week he didn't get here until almost 10:00 and the kids had to go right to bed.  How I love this man :)

Saturday morning we hung out a little and then decided to take advantage of the membership that the house has to the John Ball Zoo.  I had taken the kids there when we used to live in Kalamazoo but that was a really long time ago and they were very excited to go!  The weekends with them here has sort of been little vacations because we've been able to do so much for free because of the RMH.  Please don't ever regret putting your change in the containers or buying your kids happy meals.  It has helped us a lot!  Anyway, the zoo was really fun as you can see.

Petting sting rays and sharks

Overprotective momma didn't let her put her hands in but she had fun looking :) and standing :)

Fun in the petting zoo

Laila pet the goat!  I forgot to add to the blog from Wednesday that it went way better with the service dogs this week.  She voluntarily pet them after she got used to them!

My brave husband and older kiddos had tons of fun on this ropes course!

 We went out to eat at On the Border (thanks again for the gift cards mom!) and then went back to the house for awhile.  I'm kind of sick of being at the house and trying to have a super fun time with the kids so we got a gym membership pass (thanks again to RMH) and we all went swimming and in the hot tub at East Hills athletic club. 

We had a late lunch after the zoo and none of us were that hungry so we had Cold Stone creamery for dinner Saturday night.  Fun mom :)  After that crazy long day we brought the kids back and got them ready for bed.  Since we're all in one room, bedtime can be tricky.  Laila sleeps in the bathroom.  I know it sounds weird but she sleeps in a nap nanny so she can pretty much go anywhere with her own little bed and since she vomits every morning and it's not the greatest sound to wake up to it's nice to have her behind the door.  She doesn't mind it either because then she can get to sleep instead of being kept up by us.  Emma & Jackson definitely would not go to sleep with Jack and I sitting there so we decided to go out to the living room while they fell asleep.  We took out a puzzle and three hours later we finished it!  Not what I had figured would be on our agenda for the night but it was addicting and showing the kids the picture of it today motivated them to work on the geography puzzle I got them the other day.  Hoping the puzzle of the USA will help them learn and we actually had some of the other kids in the house working on it with us too :)

Mine and Jack's masterpiece :)

  We decided not to drive down to Kalamazoo for church again this week.  Although it would've been nice to see everyone again, we decided to stay local so we could get more time together as a family today.  We found a nice little church here in GR and it was great!  We had originally planned to try the Children's Museum with the kids but they decided they would rather stay here and watch a movie and hang out so that's what we did.  Then we took a walk over to McDonald's (where we get 50% off for being guests at RMH) for dinner and then they had to head out.  My friend Julie was away from home for a very long time with her little guy Canaan and we've talked about how hard it is to be away from home.  She was definitely right that the weekend visits are great but hard.  I wouldn't trade having them here but it is not getting easier to say goodbye, it's harder.  When Jackson hops out of the car for another one last teary eyed hug I just want to grab my stuff and hop in the car with them.  It's great having them here but then my room seems so quiet and empty now.  Next weekend I'm going to go home for a few days.  We were originally supposed to be done this Friday but since we opted for the extra week we won't be.  However, the extra week is actually the start of a whole new class session and every session starts on a Tuesday so we'll have a three day weekend.  I am scheduled to work in the cafeteria at the kid's school next Monday and I really want to be able to.  I had to miss my shift last year because Laila was in the hospital and since she has the day off I don't want to miss it again this year.  I know it seems like a silly thing but I really like to be involved at the school and see all the kids and Emma & Jackson love when it's my turn too.  The thing I wonder is how hard it's going to be to come back after being home.  I'm hoping it won't be too bad since I'll know it'll only be for four days and then we'll be done!!

Good-bye hugs

So, after they left tonight Laila and I did some nails.  We've turned into quite the fancy nail girls since spending a weekend with my sister Brooke a few months ago.  Since we left all our fancy stickers at home we just got glow-in-the-dark hot pink and a black nail pen from Meijer for some fun.  I did Emma's to match ours before she left :)



Don't laugh at the Yabba Dabbas ;)

So I laid Laila on the floor for awhile because between the daddy snuggles and all the outings she hadn't had much time to stretch out.  I put her on her belly (not her favorite) and got sucked into facebook for a few minutes.  Next thing I here "MOMMA, MOMMA!" and this in what I find.

I laughed and it really made me smile because this is something normal.  I have countless pictures of Emma & Jackson when they were still immobile but somehow would get stuck under the coffee table or something.  It's so fun to have some of that with Laila too.  She had a good weekend and did a little walking with a ladder back chair we signed out from CLC for the weekend and it was really nice to let her stand for some things at the zoo.  I also got a good workout with her in the pool at the health club.  I had her working out that right leg that seems so stubborn and did a lot of stretching her arms which she normally whines about but since we were stretching out to splash the water she was fine with it.  Jack says maybe we can get insurance to cover and indoor pool :)  Laila was also amazing u

s with her eating again this weekend.  My pity party day must've just been a bad day for her because the past few days she has been eating great again.  She really likes being in control of the spoon and I like being "out of control."  If she doesn't want to eat, the tube it is and I have to be OK with this.  Seems like as soon as I get OK and stop pressuring, she wants to eat.  Ah..... balance.

So I think we're ready for week three, whatever it may bring :)

Day Nine: Out of Control

I knew that when we came this would be hard.  I think sometimes we tell ourselves that and then think that will make it easier because we're "preparing" ourselves.  Knowing it'll be hard and really knowing the reality are two very different things.  I thought of how taxing it would be on Laila's body, how hard it would to not go home for this long, how difficult it would be for Emma & Jackson to carrying on without a mom there, how much Jack was going to have to do on his own.  Some days I wondered if things would run better without a mom and wife who was stressed out all the time being there.  I thought once I got here and was able to focus solely on Laila that I wouldn't be as stressed.  Sure I am actually taking advantage and took a nap the past few days just because I could.  I've been able to watch a little TV which there is no time for at home.  I've been able to visit with a few friends and family who have been gracious enough to drive all the way here to see me.  But my problems still remain, I'm just as stressed, just as sad.  The problem is me.  Now before you all start writing your encouraging comments (which by the way have been a total gift from God to me these past two weeks!) I want you to know that I'm working on it.  I feel better today, I know that has to do with so many prayers that are being lifted up on behalf of Laila and I.  I also know it's because of the amazing bible study I picked up the other day and have been able to dive into.  We want control.  I want control and with Laila I have none.  When I raised my other two children they understood discipline, consequences, faith.  From birth I dictated when they slept, ate, played, pretty much everything.  While I have some of that control with Laila, I do not have a way to get through to her.  I don't have her figured out.  She has so much going on and I try to handle all of it but ultimately she is going to decide if she will ever walk, if she will ever eat, if she will ever be independent and on her own.  So here I am, out of control.  When you think of that it first seems helpless and frustrating but I'm coming to a different frame of mind.

I remember when Jack and I got married and how it was a while before we figured out the balance of who was the decision maker.  I knew that he was supposed to be the head of our house but I wanted control and honestly he was ok with giving it to me but we were out of balance.  It wasn't until I had really dove into God's word and had some amazing mentors help me to see the freedom of being out of control.  I used to go ahead with decisions about our lives and then sit and worry if things would turn out and if they didn't then that would be on me.  I'm so thankful now to have a marriage where we discuss everything together and then I let him make the final decision.  Most women look at that as degrading but I look at as freeing.  If he's wrong then I can point a finger at him!  Ha!  Just kidding :)  But seriously, God put him in charge for a reason.  So now I look at this situation with Laila and I need to get out of control.  I will continue to help her provide for her and give her every opportunity that God's leads us to but ultimately God and Laila are in control of Laila.  Worry, anger, sorrow and frustration get me no where and really don't help Laila at all.  We battle, both give up then we're two steps further back than where we started.

I was talking with one of the moms in the house this morning at breakfast.  Her baby was born six weeks ago, has gained one pound and now weighs 2lb 6oz.  You read that right, her baby was 1lb 6oz at birth.  As we were talking we discussed struggling with trying to find the joys in today while really really wanting the best for our children in the future.  It's so sad that we don't celebrate the milestones without two seconds later moving on to another thing that needs to be accomplished.  Why can't we just sit and rejoice in what the Lord is doing today?!?!  I think her story really stuck me to because today her baby is the exact weight Laila was when she was born; 2lb 6oz.  I hear her talk about how her little girl just got to have a real bath (sponge bath) for the first time and how now she can wear a few pieces of clothing.  Have you praised God today that you child can wear clothing?  I made me think about how far Laila has come in her short three years and how many things were put in her path to stop her.  I beg to not be something that gets in her path.  I don't want to be a closed door, I want to be open.  I want to be the one cheering her on, not the one who's disappointed.  Here's a big thing that struck me in my study today:  "Our anxiety always stems from a desire to control and indicates that we have ceased to trust the Lord."  I can't control Laila, I can't control who decides we're not worth the fight, I can't control the path God chooses for us but I can control my lack of control.  I'm gonna try that for awhile.

So today Laila seems to have had an OK day.  I went in with her this morning and got her all set up at her table.  She wasn't wanting to hold onto the bar for support and when she finally did she just laid her head on the table.  I figure these are my two weeks to let them work it out with her so I helped a little but then let her be.  I just amazes me that this time last week she was doing so well but hopefully she'll come back around to that.  She did go on the potty again today!  Her teacher even said that when she did she called for her like she wanted to let her know so she could get off the potty.  That would be great if she can just figure out that going gets her off of it faster.  I was working on it with her back at the house yesterday and and she such a fit and threw herself forward and split her lip open.  Crazy girl.  She also looked a little better in her steps today.  She is definitely left handed and left legged.  Her left leg is much more cooperative than her right.  You can see her shaking and trying to make that right leg bend and step but it is much more difficult.  Today it looked a little more loose when she was stepping.  She did better eating today and finished a jar of baby food and drank some of her pediasure.  Without being in the classroom I don't have much more to share than just this small report that the teacher gives me everyday when I pick her up.

Thanks for reading a caring.  It's sort of my therapy for myself to write in the afternoons like this :)

Day Eight: Pity Party

Well I've tried my best to stay with a positive outlook but my sister told me this morning that's it OK to be real on here so sorry to disappoint those of you who have been saying how great of an attitude I have and how great Laila is doing but today I don't feel that way.

Laila has gone from crying about everything to basically refusing.  The past two days at school she has either found her way to cheat out of what she is doing or just basically turning into a limp noodle and refusing.  Since I'm not there I watched her this morning and they have chairs on either side of her so she doesn't fall and she just leans her body against one instead of sitting.  When I try doing any walking or standing with her back at the house she just screams and draws her knees up refusing to touch the floor.  Ever had your kid go limp and refuse to stand when they are throwing a fit?  Try my life almost constantly every day.  Dead weight.  Here's my problem:  knowledge.  Knowing that Laila is able to do these things but chooses not to is infuriating.  She did the same thing when we were bringing her to feeding therapy once a week all the way to Indy.  She does something for a little while, excels then decides it's too much work and gives up.  She had to go back on her g-tube again yesterday evening because she refuses to eat or drink again except for small amounts (again, I warned you about the negative today).  I want the best for her but I can't do anything about her not wanting it for herself.  I keep thinking about the fact that we were originally supposed to  be going home next week and I'm glad that we have the extra time because hopefully that will help her understand and do better before we go home.  At home we don't have the special tables and chairs and all the equipment they have here and she definitely doesn't have a patient teacher in me.

I wonder about all this.  If we were home and she was getting therapy somewhere else five days a week, five hours a day, would she be making progress there and I could be at home?  Jack wonders if therapy even helps at all.  She didn't have any therapy over the summer and really gained a lot of skills.  The one thing that I keep falling back to is how special it is that they are specialized with kids with CP.  They are not thrown into a classroom with kids with seven other disabilities with one teacher and a few aides to try to do class in a way that works for everyone.  I'm guessing the thousands of dollars we're spending in tuition and housing and sacrifice that my husband and other children are making has to be worth it or why would anyone do it, right?  The problem is that a lot of the families live here and their kids actually go to school at CLC and get to continue their treatment all the time.  We have a short time here and I wonder what will be able to transfer back home.  I'm sure they have a plan for that and I pray that I'll eat all these doubtful words in the next couple of week but for today......pity party it is.  Don't judge me till you walk in my shoes.

*to her therapists and teachers here and back home, sorry.  blowing off some steam today*

Day Seven: Settling In

Today Laila had an OK day.  Her sitting wasn't as good and she wasn't as comlplaint during the lying program as she had been the past few days.  They said maybe she had finally noticed that I wasn't there and was a little upset about that.  As with everything I guess there will be good and bad days.  Some really good things though were that she went  on the potty and kept her diaper dry all day.  I'm just so shocked about that.  Funny that the thing that she was rebelling against the most is one thing she did good today.  She also ate a whole large jar of baby food at school today.  They said she was starving and asking for more.  She was taking about five bites on her own and then would need help and then would take some on her own again.  Again, shocked that this is something that is going so well when its not one of the things that they necessarily "work" on at school or have a special method for but it makes a difference being in a class with peers like her and wanting to be like everyone else.  Potty and eating were not what I was expecting to get out of this but that was what she did well today.  I'll take it :)  I love that she is getting this opportunity to be in a classroom where the teachers only work with kids with disabilities similar to hers and know the best way to deal with them.

My sister (in-law) Jill arrived last night to stay a few days with us here.  Laila was SO excited to see her cousins that she squealed in delight when she saw Shyanne and Jaylyn.  It's so fun to have a little one close to the age of my nieces and to be able to see them together.  It has also been interesting to see the differences in the kids.  Jaylyn is eight months younger than Laila but so much farther along.  I know that comes with the territory but sometimes still makes me sad for Laila.  We took Jill's girls to the GR Children's Museum today while Laila was at school to let them burn off some energy.  My baby niece Shy is almost 11 months old and just learning to try to walk holding your hands.  As I walked with her around the museum today I watched her and the way her mind reels figuring out all of the things that come natural to most children.  I hold her hands and she naturally shifts her weight from side to side and her body knows to take steps one foot at a time without having to be verbally told.  We were sitting and playing with muscial instruments and she naturally passes her toys from one hand to the other.  When she is hungry she just lays back and drinks from a bottle and can drink 8oz and eat a jar of baby food all at one sitting and her little tummy can handle it.  I guess what I'm trying to say is these are all little things that we take for granted and I don't ever want to do that again.  I watch Laila struggle with most everything she does and it makes me sad for her; happy that she has an opportunity to focus so much on learning right now but also sad that she has to work so hard for things that others take for granted.  I'm so thankful that my nieces and nephews are well and healthy and so thankful especially for their parents who love and take care of them so GREAT!  Speaking of, a very happy 17th birthday to my beautiful niece Jordyn today!  I remember that when we found out that Laila would be joining our family Jill joked that she was jealous because we only had to wait one month for Laila and at the time she was pregnant with Shyanne and was waiting the normal nine months.  My how our girls have changed and grown over the past year.

Jaylyn liked the train table

My Beautiful Shyanne :)

I'd like to ask for prayers for the families that are here with me at the RMH.  It really is a mission field here.  There are varying families with various reasons they are here and every day as I hear their stories I am humbled by the "little" things that we are going through.  A new family came in yesterday and the father passed away a month ago and now just two days ago the twelve year old boy woke up with a terrible headache and is now scheduled for brain surgery tomorrow to remove a brain tumor that they found and they find out today if it is cancer or not.  I can't imagine the burden they must feel and I told them that I would pray and ask others to as well so please do remember them in your prayers.  One exciting thing is an email I received yesterday.  My favorite author is Karen Kingsbury.  She writes Christian fiction and one of the things I love about her writing it that it is real.  The characters are Christian but they don't lead perfect lives with no troubles or heartache.  Some people think that Christians have this perfect life with no trouble.  Actually the bible says the exact opposite of that.  In John 16 it says "In this life you WILL have trouble" now the best part so pay attention "But take heart!  I have overcome the world!"  I love how Karen writes about how people can turn to Christ and find a way to make it through.  So, when I was browsing through the library here at RMH first of all there aren't very many books and second of all barely anything with the message of Christ.  So I emailed Karen yesterday on a whim thinking I would probably not get a response and within an hour she answered me and agreed to donate one of her book series to the house here!  How neat is that?!?  I really think her writing could help a lot of these families through some of these incredible trials they are living through.  So if you read this Karen, thank you so much!!  And if any of you are looking for a good author definitely check out her books; great books from an even better person!

Please also pray Laila will continue to move forward and try and get used to me not being with her.  Again, I think the extra week will be good for her.

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.