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!!

Session 2: Day 2

Today has definitely been a "torn between two worlds" kind of day.  Jackson ended up with a fever in the night last night again so we scrambled to try to get him to the doctor today.  He couldn't be seen by his regular doctor so we got an appointment at another one and then found out they don't take our insurance.  Jack ended up having to leave work and take him to urgent care.  His fever was 103.7 when they got there and his poor scratchy sad voice was just about more than I could bear today.  Turns out that he tested positive for the flu.  Boo for that and boo for the fact that it pretty much means none of them will be able to come and visit us this weekend for fear that they will pass it to Laila.  The two big kids NEVER get sick so I just can't believe that it's him.  I am thankful that he got it after we left but so torn to want to be with him but can't.  Stinks.

Up here on the Michigan front however things are amazing.  I was able to be in the classroom with Laila this afternoon and she just jumped right back in and is doing GREAT.  She got two bravos today for two successful trips to the potty!  One of her successes was while I was there and it may be TMI but that potty was FULL!  She was also able to sit on the potty all by herself while I read her a story and normally I can't get her to sit by herself.  She also has eaten all of her lunch and snacks both days so far.  She ate a whole jar of baby food, drank close to 8 oz of juice and ate 1.5 cheetos today!  I sat amazed with her at lunch watching her sit by herself in her chair (regular chair, not wheelchair), hold on the to the bar with one hand for balance and feed herself with the other hand.  I told the girls that I was amazed because we can barely get her to eat more than a few bites at home these days and she basically never eats at school back home.  They had just assumed she had been eating well since she was when we left 6 months ago so they didn't mention it to me yesterday. 

The other thing that is so fun is that I got to sit with her in circle time and see the absolute difference in her language and participation.  She's calling the other kids by name and speaking up when it's her turn to play the "who stole the cookie" game.  I really think that being in preschool this year and having such a great speech therapist back home have made her vocabulary just soar this past six months.  She was also sitting up so well on the floor with just having a foam semi-circle behind her. 

I'm so happy that she can be back here and is doing so well.  Hoping that it continues!!  Tonight we're off to go to a meeting for the riverbank run.  I'm excited to see what it's all about and I was asked to speak to the group and tell them about our team coming up from Indiana and tell them about Laila, CLC and why we're motivated by them.  There is also going to be someone from WOTV that is going to tell us about nutrition. Should be pretty neat :)

Thanks for reading with us and please keep Jackson in your prayers!  Now that I mention that, please also keep a little girl named McKenna in your prayers.  Her mom is staying here at RMH and gave me permission to share that she is having a last effort brain surgery on Friday that the doctor says he's 99% positive won't work.  She's only 1 :(  Please pray for them as well.

Thanks!

Session Two: Day One

Today was a success!  We started out with no vomit (miraculous!) and as you can see in the picture she was in a pretty good mood.  She sat content in her bumbo watching Mickey while I finished getting myself ready.
We got to CLC and she didn't seem to remember the outside and then when she got inside and saw her conductors she got a very serious face.  She stayed that way for awhile and then Andrea came and asked her if she was happy to be back at school and she just looked at her and said "my chair."  Andrea said "I asked you a question, are you happy to be back at school?"  Laila thought then said "no."  HA!  That girl is so funny.  So Andrea told her that attitude won't do and went on her way.  I do LOVE how much the "get" Laila.  I love the way that they speak to her and wait and expect her to respond because she truly can even though she fools most people by pretending she can't.

There are like 13 kids in her class this time!  Whoa!  I think the most there were last time was 6 or 7.  I love it because that is one of the big parts of her gaining confidence is being able to see all these other kids like herself and know that if they can accomplish things then it's possible for her too.  Because of the size of the class, parents are not all staying in the classroom for the first week like I did last time.  I will be in the classroom tomorrow afternoon and Thursday morning.  I'm fine with this because Laila really does better without me there.  I was in and out of the school today because I had a conference about our goals and every time I walked past her classroom I heard no crying!  Woohoo!  They only time I actually heard her cry today was when I was helping her on the potty right when we got to school and another mom I hadn't seen since last time hugged me and Laila fell off the potty!  oops!! 

I'm not sure what's going on in Laila's mind but she has been asking to go on the potty a ton lately.  She doesn't go most of the time (unless she's with Bamma Kathy!) but I'm excited that she wants to.  Her conductor today said she asked a few times other than the scheduled times in class today but also no success.  Well I can't say no success, just her actually wanting to be on the potty is a huge success!  I did buy pull-ups for the first time yesterday because it is so hard, especially in public restrooms, to be able to get her diaper off and get her on the potty in an short amount of time.  Having trouble potty training??  Try having a child who doesn't walk, stand or barely hold any of their own weight at all.  Oh, yes, I'm a sweaty mess almost every time!  You'd think I'd be thinner for all that work with her!

In our conference we focused mostly on Laila's arms.  She has such a strong reflex to throw her hands up in the air if she is startled, excited, doesn't like something, and all sorts of other reasons.  She also tightens them so much when she concentrates which makes dressing and undressing, writing, doing iPad activities, driving her power chair and all the things she likes to do even harder as well.  Our doctor (at Riley) has tried to get us to put her on a muscle relaxer again but I just think that the cons outweigh the pros.  The hazy mind and relaxation of the whole body just seems to be counter-productive to what we're trying to do with her.  Andrea agreed.  Laila is physically able to relax and straighten her arms so it's not a matter of botox or muscle relaxers, it's a matter of getting her brain to figure out how to control her arms.  Enter:  Conductive Education.  They really work on getting their minds to understand and control their bodies by narrating everything they are doing with songs and fun rhymes.  I'm very excited about this being one of our main goals for this session and they seem to be coming up with a good plan to help.

So what did I do today?  Well, I brought her, had a parent meeting which was a blast getting to see everyone again, was going to run but the treadmill here at RMH doesn't work, went to Aldi and then........got a Diet Coke and fruit n' yogurt parfait from McDonalds for $1.06 with my house discount!  Oh man, this could mean trouble for me!  I unloaded my groceries, ate my delicious snack, head out to my conference then checked out the MAC which a is a fitness club right next to CLC that I can go to for free.  I plan to go run there tomorrow morning after I drop Laila off.  I wonder what it will be like running on a treadmill that isn't 4000 years old??  No complaints though because ours was given to us for free by a wonderful couple that we adore.

Please keep Jackson in your prayers as he was sent home from school today with a fever.  Have I mentioned lately how thankful I am for my family??  I have an amazing husband who is willing to play Mr. Mom while working and juggling housework, cooking and refereeing a 9 and almost 7 yr old.  I also have an amazing mom taking the kids every day after school and other family who jumps in to helps out with the kids while I am gone and especially today when Jack's at work and can't leave.  Laila and I are so blessed to have people who love us and people who believe in her so much that they sacrifice themselves for us to have this opportunity.  We love and thank you all who made this possible.

Looking forward to what the next few weeks brings!

Back At RMH

We've arrived and settled in at the Ronald McDonald house again.  I can't believe how different I feel this time.  I know what to expect, I know it's going to be hard but I also know it's totally going to be worth it.  We were greeted by familiar faces here and that makes a world of difference too! 

It's amazing to me to see how much Laila has grown in the last six months.  She wasn't scared of our room and did really well going to bed tonight.  Last time it was a real struggle to get her adjusted and she was still going through a rough time with sleeping any where besides home.  She moved around a lot before joining our family and I think that had a lot to do with her anxiety.  I love seeing her happy and settled and knowing that she is safe and at home as long as she's with her mommy :)

We headed down to the kitchen and saw a few of our friends there and will make some new ones I bet. There are three CLC families staying here this time which is fun! Laila was sitting at the kitchen table babbling away telling everyone "I sit at the table," "I have purple glasses," and yelling at me "I hold you hand."  She's very into hand holding these days which is super cute and fun.  Then we went to Walmart (which is hard to find in Meijer country up here!) and made a stop through the Subway drive through.  Thank you Grandma Mary for your generosity with giving us some gift cards for our stay up here!!

We're excited to go to school tomorrow even though I'm not sure Laila really remembers what she's getting herself into.  She did tell me this morning that she wanted to stay with "Van Syoc" (her preschool teacher back home).  I know when we get there she'll remember it.  She's got an amazing memory.  Now to see if she's excited or if she cries.......

Thanks for sharing in this time with us.  I always look forward to seeing if people follow our journey and it helps me to want to continue to write and share.  It's been helpful to be able to look back at the things she's learned.

Laila back in her "bedroom."  HA!  Like my make shift IV pole for her feeding pump?!?

We did it!!

I didn't realize when we started training that the last day would be the day before we leave for our next four weeks at CLC.  Tonight I actually ran 3.5 miles!  I never in my life thought that would be something I could do.  Jack has worked up to running over 6 miles as of tonight.  Earlier this week he just started running to see how far he would go and has just kept increasing his distance.  He's doing so great!!

I have to say that I'm surprised at the other things in my life that have changed since I started this.  I find myself eating less and healthier.  I feel like I don't want to just go run all this way and then cancel it out with ice cream or I don't want to eat a big greasy burger because one day I did that and it felt like the thing was kicking me in the ribs the whole time I was running.  While I haven't lost a lot of weight yet, I do feel like my clothes are fitting better which is nice :)  The other thing that is so exciting is that Emma and Jackson have started walking and are doing between 1-2 miles.  They are following our example and Emma has even signed up to walk the 5k for Laila too!

Our team has grown and we have raised so much more money for CLC than we had thought we would.  We decided to try to get some corporate sponsors from our town since we're three hours away and they wouldn't have been included in soliciting so far.  Our town and families have responded in such a huge way and have shown so much love for Laila that it just amazes me.  Check out our fundraising page here.

Tomorrow we check back in to the Ronald McDonald house and Laila starts her next session at CLC on Tuesday.  Be looking for blogs with updates of how she adjusts back and what kind of progress she makes.  Pray she doesn't cry the first three weeks of a four week session again ;)

Please also pray for us as we are just beginning our adoption paperwork again to bring our son Ranjit home from India.  This might get a little tricky doing paperwork from another state while Jack is home with the other two kids!

Over the Hump

Could it be?  Am I over that hump that everyone says you get to when you start running and stop absolutely hating it??  I think it's true!! 

I just finished up my sixth week of training for the 5K run for the Conductive Learning Center.  I have never been a runner.  I was a cheerleader in school for several years and it was very hard work at times but nothing like this.  (no laughing!!)  Jack found an app on our iPods that is helping us build up to running and this week really kicked up the running portion quickly.  From my last run to today's it increased by five minutes.  Literally a week ago I was thinking of quitting.  I knew the time was going to increase rapidly this week and I just thought I couldn't do it.  Then I looked at my baby girl. 

Laila and I will be heading up for our second session at the Conductive Learning Center in just two weeks and this is incredibly hard work for her.  Literally everything is hard work for her.  How can I expect her to give everything her all if I'm not willing to do this?  I made a commitment to do this for her and I have wanted to quit so many times but I won't.  These kids deserve this from us as their parents and supporters.

So yes, I'm over the hump.  I'm to the point of looking forward to seeing how far I can run.  I've stopped looking at the little clock going "I've only gone 30 seconds??" and started looking at it and having joy over how five minutes passes quickly when at first 90 seconds almost killed me.  That was my prayer, that I could make it to this point.  Thank you Lord!

Please take a minute if you can and check out our fundraising page.  So far we have seven on our Legs for Laila team and a few more have said they are going sign up to go with us.  We are also gathering corporate sponsors so if you know of a business that would donate please let us know.  We have to have the business names by Wednesday 3/28 for them to be included on the CLC t-shirts.

Who could not love or do everything they can for this little face who's saying "momma, I'm on elbows!!"