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!!