Thursday, November 29, 2012

All that I dare say ...

A while back, Kim wrote something vague here along the lines of "Jeremy has some exciting news to share."  It's been a while, I know, and I haven't offered any explanation whatsoever.

So, it's time to set things straight.  For starters, I am now in touch with an organization called International Voice of the Orphan.  IVO is "passionately committed to care, comfort and advocate for orphans around the world."  Among other things, IVO coordinates short-term missions trips each year.

I reached out to IVO and plan to be part of a team going to Uganda in June for about 2 weeks.  The team will volunteer at an orphanage, work on a service project, and support our brothers and sisters in Christ there.

This is really very exciting, and I hope that this is the beginning of a longer relationship with IVO.  Who knows?  As my children grow into teenagers, maybe someday I can take one or more of them with me and we can serve together.

I'm asking friends of mine to pray for me with regard to this.  Specifically:
  1. That I would be able to budget my time away from work to make this Uganda trip. (Basically, I can't get sick or have family emergencies. And that's always a wild card in a family of eight! )
  2. That God would provide the finances necessary for me to go (I'm at the "I think I can" stage!)
  3. And (most importantly) that I wouldn't lose my nerve.  
Believe it or not, that is ONLY HALF of my exciting news.

The other half has to do with a work opportunity that has come together for me that I will be able to do in addition to my regular duties at Temple University.  This is a teaching opportunity and it is something that I have attempted to "break in to" for several years.

Honestly, I had pretty much given up on the idea.  But not long after reaching out to IVO, this opportunity all started to come together very quickly.

I feel like this is a confirmation of my decision to pursue the Uganda trip, among other things.  Time and again I have been reminded of Galatians 2:10 where the apostle Paul writes about being commissioned to do "the very thing" he had longed to do.  And, yes, it'll also help a lot with the money side of the Uganda trip.

It is very encouraging when you sense that God really is ordering your steps!

So, there it is,  my BIG NEWS ... a trip to Uganda in June, a sense of calling, and a once-abandoned desire suddenly fulfilled.  Nice!

Saturday, November 17, 2012

A New Friend For Leo

Yesterday we had the opportunity to meet Tanner and his mom, Jessica. Tanner's family had donated one of the Ipads to the WHS Halloween Contest. Since they live relatively close to us, we decided to meet at a mall so Tanner could give Leo his new Ipad.
Leo was actually more interested in Tanner's Ipad as it had Elmo playing on it!

Apparently, there are quite a few families whose children have WHS in our general area. They get together every few months. We are looking forward to connecting with these families and Tanner and his family. What a great side benefit of winning the contest.

We may have made a mistake in telling the boys that Leo would share his Ipad with them.

He actually is quite possessive of it and will "yell" if anyone tries to take it off of him.

I think he looks smarter just holding the Ipad. The look on his face is a look of power. He knows he has what his brothers want.

Wednesday, November 14, 2012

God is Good

This is how Leo spends most of his days...

pushing cars, any car from one part of the house to the other

and on any surface. Someday I hope to hear him say, "Beep, Beep!"

Jeremy has some exciting news to share. It is so awesome to pray for something for a long time. Almost give up hope of it ever happening and then have God surprise you out of the blue. I will try and get him to share soon!

Tuesday, November 13, 2012

In Case You Didn't Hear....

WE WON!!!!  I realize that not all of our blog readers are facebook friends so I wanted to make sure we got the word out that Leo the Lion came in first place with 501 votes.  Thank you to all who voted for him.  We are waiting for his new ipad to be delivered.  Jeremy has promised to help me learn how to navigate the ipad and how to download apps that will be most beneficial to Leo (and his brothers).  We are anticipating using the ipad for developing some fine motor skills, cause and effect skills, and fun interaction when he is eating and has to be in his high chair.  Thank you again for voting and helping to spread the word. 

Leo is doing so well.  Last week his PT helped him climb up on our turned over laundry basket, which was pushed against the sofa,  to finally climb up on the sofa.  He was so proud of himself and continued to do it at least another 15 times.  I was especially pleased when our PT said repeating a learned skill like that over and over is typical toddler behavior.  Yea!  Typical toddler- not words usually associated with Leo.  Eating is still a work in progress, but I have hope that someday he will eat by mouth.  He is also using the sign for "daddy", "more" and "I want" somewhat consistently.

Life is busy as like everyone else we are gearing up for Thanksgiving.  Jeremy spent some time tonight helping our nephew work on a graduation project for school.  We are catching a glimpse for how demanding high school work can be and how much a teenage boy can eat.  I do believe I will be in trouble when all 5 boys are teenagers. 

We have some exciting things in the works for 2013 and will take the time to share them in a later post.  God is at work and is opening some doors we are excited to walk through. 

Tuesday, November 6, 2012

Leo Needs Your Help

Sorry for the desperate sounding title but Leo really does need your help.  We have entered him in a contest to win an Ipad.  Leo is entered in a contest on the Wolfhirschhorn website.  The top winners will receive an Ipad.  This technology could really help Leo with his therapies and his life in general.

The purpose of the contest is to draw attention to Wolf-Hirschhorn syndrome and to educate people on what it is by getting them to this amazing site that educates parents and families. Kevin, who runs the site, is actually the first person we contacted to learn more about Wolf-Hirschhorn when we were considering adopting Leo. He spent over an hour on the phone with Jeremy answering all of his questions. The parents we have "met" on this site are incredible and have been an encouragement to us. We actually don't like that we are competing against them.

What we need: we need you to vote for Leo!!!! You can only vote once. So, could you please encourage your friends and family to vote, forward this blog to everyone and put something on your facebook account if you have one!!!! Leo needs all the votes he can get.

Go to this site to vote:
Leo the Lion with the cute blue glasses is about half way down the page!

They ran this contest last year, but we didn't enter b/c Leo was in the hospital having surgery. Last years winner had over 700 votes, so you can see the competition is stiff as the prize is so great!

The Contest is open till Saturday, November 10th

Monday, November 5, 2012

Walking Together


Jonathan loves Leo. He is always wanting to help Leo. I also think Jonathan is a little jealous of Leo's walker. He loves to fly through the house using Jonathan's walker. 

 Leo is doing really well using his walker. He is getting stronger and stronger each day. We are looking forward to the day when he will walk on his own. He is also understanding more and more. Tonight during Bible time Jeremy said if you have a question raise your hand- as he said "raise your hand" Leo's hand went right up. He had everyone laughing. Progress, slow and steady progress is being made.

Sunday, November 4, 2012

The Club

There is a club. When some find out they are going to be a part of it they simply choose not to be.  When others find out they are going to be a part of it they make the brave choice to embrace what they consider to be their "lot" in life.  Others while embracing their membership, grieve for the dreams that may die.  Many accept membership to this club as God's will for their family.  Some like Jeremy and I voluntarily choose to join this club.  I have met so many other families that are volunteering to join this club and they are some of my heroes as they have "joined" multiply times. 

Thursday I was quite sure I didn't want to be part of this club anymore, but by Saturday I was so thankful I was.  This club is the club of kiddos who have special needs.

On Thursday, Leo and I headed off for Children's Hospital to take part in their cleft palate clinic.  It was our first time going.   We were told to be there by 9:00 and that we would probably not be done till 4:00.  In hind sight, I probably should have cancelled.  I was tired.  We hadn't had power since Monday night.  Thankfully friends loaned us a generator, but that still only provided limited electricity and I hadn't been sleeping well.  The short version of our day was that by 2:00 we had seen at least 4 doctor's none of whom added much to Leo's life.  They all basically said - "your doing great, keep it up".  At 2:00 (still not having had lunch) I asked how many more do we need to see.  They then proceeded to list 4 more- one of which was the dentist (who I really wanted to see) and a psychologist.  Telling me my child needs to see a psychologist basically put me over the edge.  He is happy, he is non-verbal, he is two.  I might have needed to see the psychologist after my day, but Leo not so much.  I started crying. (Why I don't know.I was done, oh so done).  The nurse not sure what to do with me immediately got us in to see the dentist and then gave us our walking papers and told us to go home.

There were probably 20 other families there, but my guess would be that for most, certainly not all, this was their yearly trip to Children's to have things checked in one day.  The thing is some months, Children's is my second home.  We see so many specialists there that to spend a day seeing more specialists who really aren't going to add anything to Leo's life is a waste of time in my opinion.  Apparently, the cleft clinic is a yearly event.  We shall see what next year brings, maybe by then Leo will be talking and able to really give the psychologist an ear full.  At the end of the day, I decided I really didn't want to be part of the cleft palate club anymore.

Thank God for Saturday.

On Saturday, I headed out to Davisville Church where I participated in Caregiver Day.  The leadership at Davisville has a heart for families that care for special needs kids and they provide such amazing care for those families.  Caregivers day started at 9:00 and finished by 4:00, but I left looking forward to next years "club meeting".  You would never know by looking at these women that they were part of the special needs club.  Except, for the fact that we all looked tired.  These were incredible women, who have chosen to see what a blessing their children are.  They love their children and can not imagine their lives without them.  They fight for their children.  They battle bureaucracy daily for their children.  They want what is best for their their child.  They love fiercely and deeply.  They are in it for the long haul.  I had the privilege to spend a day with a group of amazing women.  We were all treated to breakfast and a hot lunch on china dishes.  They cleaned our cars while we were inside being pampered.  We got haircuts, manicures, foot massages, hand massages, body massages, chocolate, eye brows plucked.  We listened to each others stories and were an encouragement to each other.  This is a group I want to be a part of. I left feeling relaxed and rejuvenated. 

The honest truth, some days being part of the club is hard (ok a lot of the days can be hard).  But the majority of the days it is so rewarding.  I am rewarded daily in smiles, giggles, and hugs.  I am so thankful that God chose us to be parents to a special little boy.