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 :)