Session Two: Day Six

Well another GREAT day :)  Poop and pee on the potty at school and then another bravo for pee right when we got back before she took her nap!  She still had a wet diaper at lunch time at school but we're at least catching some of it!  I'm SOOOO excited!

She also started feeding herself at lunch today!  They were playing a game where everyone would take a bite together and they happen to not be right by her to help so she decided to do it herself!  Her aim is still a little off but they were so proud of her doing bite after bite and getting better all the time! 

Her arms are getting so much better.  She is helping more with dressing and undressing.  She tightens up at first when you ask her to straighten but then her body catches up with her brain with giving her the cue of the word straight and then she will straighten her arm out.  They are using arm braces a lot at school to retrain her body and I think we'll be having our friend Allison make us a pair.  She did however to a great job having straight arms on the potty after school today.

I wanted to share this precious picture from yesterday (I thought I'd spare you the explicit potty pictures we sent daddy ;).  She was able to spend some time with the bigger kids yesterday while we were working on the TV interviews.  These girls took right to Laila and talked and played with her.  I love watching these girls giggle about boys and be stylish with their peace signs and zebra print decorated walker and clothes.  I'm so excited to see what the future holds for Laila because I just know God is going to do GREAT things through her!

Session Two: Day 5

We started off with a very early morning today.  We got to school early to be able to be a part of the school promoting their scholarship program through the Riverbank Run.  We put on our very bright new t-shirts and were out the door at 7am.  First we were able to be a part of the group of the kids in the background while they interviewed a few other runners and then it was our turn :)  Check out this link to be able to watch the interview :)

http://www.fox17online.com/videogallery/69561870/News/River-Bank-Run-Preview-#4---4-24-12%23pl-62882988

I was nervous to see how Laila would do all day with starting out so early but once again she was a shining star for her momma :)  She had another great day at school with two bravos and one of them including a poop on the potty!!  Her standing is just amazing me as well.  I'm soaking up every minute and praying that we can keep these things up when we travel back home.

In case any of you wonder what we do in the evenings.........

snuggles in mommy's bed are pretty much a must :)  I'm trying to soak up my alone time with her while we've got it!

Speaking of not a lot of time, I've gotta go.  We got a huge packet of info that has to be done ASAP for our adoption of RJ.  Gonna try to get a little done before this little on is done watching Mickey!





Session Two: Day Four

OK yes, it is a picture of her on the potty but I kept it clean :)  She sat all by herself and we were playing peek-a-boo from side to side.  Notice we have to keep cases of formula on the chair because freakishly strong girl can pull the chair right over!

Well I did not think that on April 23 we would only be posting about day four but here we are! 

I was really nervous about today.  The past week was a huge whirlwind, tons of driving and packing and unpacking and not a lot of Laila time.  I had tried to get her back to preschool last week while we were home but never got it worked out and our therapists already had people scheduled in our spots while we were supposed to be gone so Laila got a lazy break from everything except what we do at home and I'll be honest and say there wasn't that much of that going on either.  Sad, tired, busy mommy just didn't have it in her last week.  With all of that break for her I wondered if coming back today would be hard.  When we pulled in she got a little whiny and wasn't a whole lot of smiles when I brought her into the classroom.  I wondered all day if she was crying and fighting them. 

To my surprise, her conductor today could not wait to tell me how amazing her day was.  She walked out to me pushing her little chair and then when she got to the hallway she stood all by herself just holding the back of the chair!  Liz said she did AMAZING today.  She got one bravo which she then told me about the whole car ride back to RMH.  "Momma, I go potty! Momma I pee!  Momma I bravo song!!"  I love how proud she is of herself and I'm of course the proudest mommy EVER!  She also did amazing standing at the sand table playing all by herself today.  It's a little higher table so there's a little support under her arms while she leans over the table but Liz said she had very beautiful straight legs and was very careful to use one arm straight to hold herself up while she played with the other hand in the sand and then would safely put the other hand down, arm straight to play with the other hand.  She said every once in a while she would have to put her hips back straight again but for the most part she STOOD and played on her own today.  She also loved her lunch today and ate it right up.  I called and told Jack and he said "OK now how do we trick her into thinking she's at CLC when she's at home?!?!" I told him this is why so many families move here just for their children to attend CLC. 

While we can't move here, I did sit and look at Laila before I laid her down for a nap and just thought what a miracle she is.  How different her life would be without this opportunity.  We wouldn't know about this school if we hadn't run into another family from DeMotte who has been here before and we probably wouldn't have ever come if REMC hadn't given us the grant and the opportunity.  I also probably wouldn't be here if we hadn't had an amazing friend and therapist through First Steps who believed in Laila so much that her family gave us a check and said "Here's your application money, do it!"  We are so completely loved and supported and I hope that everyone shares in the miracles God is working in Laila's life every day.  We're so excited that God gave us the opportunity to be a part of Laila's journey and the resources to give her what she needs to become who He has called her to be and all for His glory!  (I also can't wait to see the miracles He'll do for our new son hopefully coming later this year!)

Just wanted to give a quick update about the run too.  I got a whole big box of shirts and socks and lanyards for our team today.  Again, I want to thank everyone who is running and walking, donated so far and want to give a big THANK YOU to the businesses that donated as well.  We'll wear our shirts proud showing off the businesses that love our little girl and the school that lets her shine!

Best Tip: Try out your clothes

When Laila and I were at the training with Steve and Margeux Drake for Team CLC one of the things they told us was to make sure to try our running clothes before the day of the race.  You have to make sure that they don't have anything in or on them that would irritate you.  They were mostly talking about if you went out and bought new running clothes but let me tell you, you have to also try out old ones!  I jumped on the treadmill a few days ago and had grabbed out some running pants that I hadn't worn in a few weeks but had been training in since the beginning.  Well, let's just say that I think I may have lost more inches than pounds because if I had been running the race everyone would've gotten quite the show.  They fell right down!!  But since I'm a crazy OCD person who won't stop once I start, I spent my whole run that day pulling my pants up!!  So the moral of my story today is to DEFINITELY try out your running clothes close to the race even if they're not new!  Happy Running!

PS - I'm running 3.5 miles every other day consistently now.  Still blows my mind!  If you'd like to support Team CLC and our Legs for Laila team please click here

Home for the week

It's been a very crazy weekend.  I got back up to GR Friday night and Laila was so sick and I finally got her settled down for the night and went to sleep.  Saturday morning I was woken up by a call from my mom telling me my grandma had passed away.  I packed up our room at RMH and came home.  I spent the whole weekend wondering and worrying and again torn between family and wanting to do what's best for everyone.  This morning I got a call from Andrea at CLC telling me to do what is best for our family and we can jump back into CLC whenever we can.  What a relief.  I can now spend this week helping my mom get ready for the memorial service and not have to grieve this loss without the comfort and support of my husband by my side.  I'm so thankful that Laila was doing so well last week and it helps me to be encouraged that missing this week won't, hopefully, set us back to start all over again next week.  We'll plan to go back on Sunday night and get back going with therapy on Monday morning. 

Last night I found a post I had written about my grandma a few years ago when she had her 70th birthday.  Please click here to read it and rejoice with us over the time we had with her and the special person she was to so many.  Our grandmothers were the reason I started this blog.  Several years ago we went to a mother daughter banquet at our church and we had all of my moms and grandmothers there and I just thought how lucky I was to have all of them still in my life.  This is the first one we have lost and I know how lucky that makes me and my children.  Grandma is and will continue to be greatly missed.

Session Two: Day 4 (not so much)

The last 24 hours were not what I was expecting at all!  Beginning last night Laila developed a cough and then spent the whole not coughing and vomiting.  I decided at about 5:30am that we needed a daddy consult as to how to handle today.  With Laila's history and the fact that Jackson has the flu and came down with it the day after we left we decided we just couldn't wait it out and see, so she and I loaded up in the car and drove the 3 hrs back home to make a trip to the doctor.  They don't accept her insurance up here plus we just need our own doctor who knows her history and what is normal and what is not for her.  Turns out she developed an ear infection.  Mind you, I specifically took her into the doctor on our way out of town on Monday just to make sure she was in tip top shape for this adventure.  Plus I had her at the ENT at Riley a week ago for her six month check up from getting tubes put in and he basically called me and our doctors incompetent and said her tubes would be draining if she had a true ear infection so we must be wrong that she's getting them.  This goes to show you how quickly things develop and go down hill with her and why we're so thankful for a pediatrician we love and trust.  So, those of you that I've had to cancel on for various things several times.... this is our life.
The good thing is that she tested negative for the flu so we know she hadn't caught it from Jackson before we left.  The bad part about that is that Jackson spiked a fever again last night so even though we were home and in town, we were not able to stay.  Kind of seems like a little bit of a sick joke to be missing my kiddos so much and have Jackson crying for me in the night and be at home but not be able to hug him.  We just couldn't chance Laila catching it and there is still a possibility that Jack or Emma could still develop it in the next few days.  She already missed one day of a four week school and with the way everything hits her so hard I'm guessing she would miss more than the 3.5 days that Jackson missed of school this week.

I planed just to leave town but I just couldn't go without being able to see them.  We had sort of a "prison" visit at my mom's and I just talked to them through the window as to not get the germs.  Laila was so pitful begging me to let her outside and saying "pleeease!" for her Grandma & Papa and then for Emma and Jackson after we left.  Absolutely pitiful.

It was a rough six hours in the car today with tons of vomit, especially on the drive back up here.  She had a rough time getting ready for bed and couldn't stop but I think she is finally asleep for now and hopefully the meds will kick in soon and she will be able to get back to CLC on Monday.

To end of a good note though, we had a great time at the charity event last night at Peppino's.  Laila loved getting to meet Ann and Jason and we so appreciated them driving up from Kalamazoo to spend time with us!

Session Two: Day 3

Today I got to stay in the classroom with Laila for the morning.  All the routine of it was coming back to me again and obviously to her as well.  I'm just so thankful to see her participating and actually trying instead of crying and fighting everything.  You can definintely see the maturity that she has gained this year.
I was able to observe her work in the lying program where they are really working on having a straight body and moving limbs independently instead of everything involuntary and all at once.  She didn't struggle near as much as I thought she was going to and her conductor even commented on how much improvement she has seen in her just in a few days.  I've also been able to notice that in things like putting her shirt on and less hands flailing everywhere in the bathtub when I go to wash her hair and she might get startled. 

I helped her on the potty twice and again, amazed at how she's sitting so good and not fighting it. No bravos today but that's OK.  All those days of crying and fighting the first time we were here just flood my memory and I'm so thankful that we were able to get through that with tons of progress on the other side and so excited to see the progress this time without as much fighting!  I think it also really helped that after we were here last time we went and bought the same kind of potty and even splurged on the ladder back chair that she uses to hold on to with some help of some amazing friends, grandma Kathy and Santa ;)  That crazy wooden spindle chair was almost $300!!  Wood workers, get into that business!!

I love to see how Laila interacts so much more with the other kids this time and is a little chatterbox.  Not sure if you remember our friend Dakota from last session but his mom came with a BIG surprise for Laila yesterday, literally!  She said she had bought this giant Tickle Me Elmo for Dakota forever ago and he just never got into it and she remember that Laila liked Elmo so she saved it hoping we'd come back again.  It's bigger than her!!

I have to be honest and say I'm waiting for the ball to drop.  Laila has a tendency to love to show off or be really proud of herself with something for a little while and then completely quit.  I hate that I feel that way but I'm also proud of myslef for learning over the past few years to rejoice in the moment and continue to work in the next.  Andrea said today that she thought that if Laila was going to do that she would've by the end of the day today and she didn't so that's really exciting.

We were able to go to the nutrition information and running tips meeting last night and meet some amazing people.  Steve and Margaux Drake were presenting at the meeting and they are the couple that is running the 25K and then turning around and running back to make it a 50K.  And no, as I've been asked, they are not running backwards ;)  Anyway, Margaux is a nutrition expert for WOTV here in Grand Rapids and she shared a bunch of tips on eating right and specifically the night before and day of the race.  I was able to share with the group the progress that Laila has made at CLC and what a difference they are making in these kids lives by running and fundraising for CLC.  Of course Laila hammed it up for everyone and they loved her :)

We were excited to go to the meeting but also bummed because Wednesday nights are when the volunteers bring service dogs into the house here at RMH for the residents to have fun with.  This became a favorite for Laila during our last session and it was amazing to see how she warmed up to them over our weeks here.  To our surprise and excitement a few of the dogs were still here when we got back!!  She was so excited and did great with them!  She kept yelling "I pet him nice mama, I pet him nice!"  The only dog she usually likes, scratch that, LOVES is my sisters dog Duke and he's a smaller dog so it was fun to see her being excited about a bigger dog.  We're planning to apply for a service dog for her next year and it will be a golden lab or golden retriever so it's good she's getting this practice now :)

Tonight we're going to a restaurant downtown called Peppino's.  There's a Social Charity Club here in GR and they have organized for the $10 cover charge to go directly to CLC.  I'm very excited because a friend from High School that is living in Kalamazoo now is going to meet us there.  She and I reconnected during our last trip to CLC when she was reading my blog and shared with me about her precious sister-in-law who had CP.  It's been a very long time and I can't wait for her to meet Laila. 

Thanks to everyone for the prayers for Jackson.  He is doing much better today and has been fever free since this morning.  Looks like the medicine is working quickly and hopefully he can go back to school tomorrow.  We're still on the fence as to whether it would be smart for them to come this weekend or not.  Please continue to pray for clarity on that issue for us.

On a side note, we got a call yesterday that our home study is completed and approved for our adoption of Ranjit!  That's an exciting step and I'm again very thankful for a husband who's not only willing to take care of the kids (especially while sick!!) but also willing to help out with all of these paperwork things that I normally handle.  Love you honey!!