Lily's Laugh

Nathan and Jason captured this precious moment with Lily. We had a ball. She has a beautiful smile and infectious laugh!

Lily's Busy Summer

Lily with her brother and sisters and all of her cousins on Fourth of July!

Well, the pressure is on now with Jason's last post...I better get you all updated on our little Lily! Lily is now 14 months old (on July 14) We have had an amazing summer of achievements with her. The nutrition that Lily gets from her g-tube is really making a huge difference and we see changes in her everyday. In December when things got really bad and Lily stopped looking at us - it was like a light switch got turned off inside of her. Well - that light is definitely shining again and every smile and every laugh and every direct look at us warms us all over.

A few of Lily's accomplishments over the last couple of months include:

Gross and Fine Motor Development:

*Sitting for periods of time up to 10 minutes.

*Rolling, rolling and more rolling! Lily has figured out how to throw herself out of her sitting position and roll across the floor to get to what she wants. The problem with this is - Lily does not use her hands at all to stop herself from hitting her head. The therapists think she enjoys the stimulation that she gets when her head hits the floor. Ouch! I have read other places that many of the 1p36 kids have trouble with defensive reflexes.

*Assisted Standing. During PT our therapist has Lily stand against a bench. She does a very good job standing and does not fight it at all. For short periods of time she will stand unassisted - but leaning on the bench. Lily is also starting to put some weight on her feet in our laps on all the ground when you hold her up.

Her foot that turns out has been getting worse with the standing and so we will be getting some SMO's - small braces for her ankles that will fit inside her shoes. We actually got her measured for these today and our 5 year old daughter Ella helped pick out the design. Our state's early intervention program pays for one set of braces per year. This is a nice blessing as these are pretty pricey.

*Clapping - I started crying the day Lily clapped with me the first time. We were at a bbq at our friends house and Lily was laying on her back on a blanket in the shade. I was playing with her and clapping and saying "Yeah Lily!!" And then she just did it! I couldn't believe it. It was such a huge breakthrough for her to actually put her hands together and imitate what I was doing. Since that day Lily has started clapping and banging toys together. She doesn't do it every day and she doesn't always do it on command - but I don't care - she is doing it!! :)

*One afternoon in June I was able to get Lily to wave at me over and over again when saying "Bye Bye". She probably did it 10 times. Of course no one was home except me to witness it and I haven't really been able to get her to do it again.

*All Fours - We are struggling with the concept of all fours. Lily does not like to use her arms for anything. She especially does not like to put pressure on her hands. This last week while visiting my parents in Atlanta Lily started scooting forward using her legs. But she does not use her arms at all. The good news is that she is not arching as much to get places - she understands that she can get to her toys by moving forward. My homework for therapy this week is to try to work on getting her to use her arms more. We are supposed to hold things over her head so she has to reach for them and practice going in all fours.

*The ball. Lily loves bouncing on the exercise ball. It gives her a lot of stimulation that she enjoys. We can get her to do some things when on the ball that she will not do on the floor. She will use her arms and hands much better on the ball. I am absolutely terrible at holding her on that ball - it is so hard! I am telling you - the therapists have strong back muscles - I apparently do not! :)

Eating

*Lily is still on 24 calorie Neocate. We are feeding her about 28oz per day through her g-tube. In June we began increasing her feedings slowing from 4oz per feeding to 6oz per feeding. Our biggest accomplishment over the last couple of months is that we have given up her nighttime feedings! Because she is taking more and more during the day - we do not have to hook her up on the pump overnight. The majority of Lily's feedings are during the day while she is awake. Typically, we give her one more feeding at night after she goes to sleep and before we go to bed.

*Putting things in her mouth like pretzels and graham cracker sticks. In May Lily was really fighting us on the eating by mouth. She spit out everything I would try to put in. She got really good at it too - many times I would have rice cereal or squash sprayed on me! Lily's biggest issue seemed to be the spoon coming at her mouth. She would grab it from us and want to hold it herself. Our speech/feeding therapist recommended trying foods that Lily could hold and put in her mouth herself. Because we suspect Lily is allergic to dairy and possibly soy - it limits us to non-baby foods. All of the typical baby hand foods contain milk powder and soy in them- crazy. Anyway - I found some pretzels and graham cracker sticks at Whole Foods that contained no fillers. Lily loved them. She loves the salt on the pretzels and the sweet on the graham sticks! She is her mommy's daughter!

We also have tried avocado, sweet potatoes, pasta, mashed carrot and potatoes. Now when I say "try" we are talking like the smallest amount you can imagine. But I still count it as trying.

Our biggest breakthrough has been just this week. Lily got a virus 2 weeks ago - throwing up and diarrhea. She had no appetite for about a week. Luckily with the tube I could feed her plenty of pedialyte so she didn't get dehydrated. We had to work back up to our 24 cal very slowly. Lily wanted nothing to do with any type of food by mouth - so we took a big break. I started up again just late last week. I fixed her rice cereal with pears. Not only did Lily let me feed her half of the bowl I fixed - she was opening her mouth for more!! We typically feed her by mouth 1-2x per day. The first feeding always goes much better than the subsequent ones.

*Taking water from a sippy cup - We use The First Years disposable cups. Our Speech Therapist recommended them because they are very easy for the kids to get liquid out of and the spout is soft and therefore nice for a teething mouth. They work great. Lily cannot hold the cups herself - although she is starting to try. Lily still has not figured out how to hold things with two hands and bring them up to her face. She tries to do it with one hand.

Teething

* Uggghhhh Teething! It is really unfortunate that kids get 20-something teeth. We are about to get our 8th tooth and it is not going very well. This summer Lily has started struggling with her skin again. We don't know if it can be attributed to the weather or teething. I swear each time a tooth is about ready to pop through her whole body breaks out in a rash. She gets diarrhea, diaper rash, doesn't sleep well and grinds her teeth. The grinding....it is like fingernails on a chalkboard. We try so hard to hand her something to put in her mouth each time she grinds. She actually has gotten better with this. I think the grinding peaked at tooth #6. I am sure there will be more teething stories to come - since we have 18 left to go.

G-Tube
* In May we switched from a large g-tube to a mini-button. This was a procedure that took her several days to recover from. Of course the doctor said she wouldn't even need Tylenol - that it should not have been painful. Well- not for us. Poor Lily wouldn't get on her belly for almost 1 week. That mini-button only lasted about 3 weeks. The mini is a fairly new button and does not have market share whatsoever. The nurse practitioner at our office recommended it and we didn't know any better so we ordered what she told us to. When we went in for a check-up - the NP took out the button and it was black on the inside. She decided we needed to change the button right then and there. It ended up being a huge ordeal - we ended up having to go to the hospital and get a Mic-key button. Yes - the two buttons are mic-key and mini buttons...

Anyway - the Mic-key has been around for years and is doing fine. The extension tubes are much easier to use and leak much less than the mini. So- for anyone out there trying to decide which route to go - our vote is Mic-key!

Shots

*The last round of shots Lily received was in December when she was 7 months old. This is when she stopped looking at us and she got so miserably sick- literally within two days of the shots. We are very very hesitant to give her any more shots at this point in time. In general we are all for vaccinations. Our other 3 children have had all of their shots. We know that there is all sorts of research saying that shots do not cause autism. What we don't know is how shots affect certain kids with 1p36 deletion syndrome. No one can answer this question for me. I know that a lot of the 1p36 kids have gotten their vaccinations. But it seems that every child who has this syndrome is unique. One child may be fine with them - another may not. Lily has such issues with her gastrointestinal system. Each time she gets a virus - her skin completely freaks out. I have great reservations about putting live viruses - such as the MMR into her. I am sure there will be more on this later...

Happy First Birthday Lily!!

*In May- Lily had her first birthday. We had a big birthday bash for her with over 70 people. Before the party we had sent out an email to everyone letting them know that we were starting a savings account for Lily that would help with things such as the Boston 1p36 conference or certain therapy components, etc. Well, we never expected the overwhelming response we got. We received $1000 dollars in gifts for our sweet girl. We were humbled and overcome with emotion at how generous everyone was. This gift will enable us to come to Boston to meet other 1p36 families. We can never thank our friends and family enough for these gifts! You guys rock!!


Lastly, I want to mention one of our neighbors who needs an enormous amount of prayer. On July 5 in the middle of the night our 41 year old neighbor Becky suffered a massive stroke. She is currently in the ICU. She is a very strong individual and she is trying to come back to her children - 7 and 4 years old. She cannot speak and is having trouble moving her right side. She has made great strides in the last week. But still has a difficult journey ahead of her. We have a very tight neighborhood and our neighbors are an extension of our family.

Thank you all for all of your continuing prayers. We definitely need them!

Take care and God Bless. Julie

Coming Soon...

If you were to review all the historical posts on this blog... you would complete the task in about 3 minutes. That is because in order to review historical posts... there must be posts in the first place.

We will post more. We want to post more. We need to post more.

I am posting tonight as Julie is next door scrapbooking (at least that is where she says she is). I am committing us to write more often in this space not only for our friends, family and new 1p36 extended family... but for us! Julie is right, it is therapeutic to write and tell people about our sweet Lily. We both enjoy it... it's just the whole 3 other kids, laundry, breakfast, lunch, dinner, lawn, job, school, baseball, softball, soccer, grocery shopping, yadda, yadda, yadda-thing gets in the way.

Well... no more excuses. We need to be sharing the joys we have with Lily with everyone. She deserves it. We deserve it. Thus... from now on, you will see more posts! And more pictures of Lily cakes.

(Pretty easy for me to commit not only myself to writing more but commit Julie as well huh!? Well... that's what happens when you leave me alone with all 4 kids for your scrapbooking! Take that!)

We have a lot of ground to cover to catch-up on all the amazing things that have occurred with Lily and in our lives since our initial posts. We had Lily's first birthday, her first swim in the pool, the amazing progress she is making with her PT, OT, RD and ST, her new sunglasses, her chewing on pretzel sticks... and so much more.

They might be short in length, but they will be long in meaning and love. We hope you enjoy reading them as much as we will enjoy writing them.

Jason

God's Plan & Welcome to Holland

It's funny how sometimes it takes awhile for things to sink in... to process information... to understand why God dealt you the hand he did.

Each and every day Julie and I think about why God chose us to be the caregivers of our beautiful Lily. I don't understand it. Why us? Why not someone more capable, holy and worthy of such a gift? Obviously he chose us for a reason. Obviously he has a plan for us and Lily. We don't understand it... but we are honored to be her parents and thank him everyday for giving us her.

She is the most lovable and sweet baby I have ever met (and we have 3 other pretty darn sweet ones). I still have no idea what our future has in store for us on this journey with Lily... I just know that Julie and I will love and care for her unconditionally for the rest of her life.

We read a children's book to our kiddos called "God Gave Us You". That book inspired the URL of this blog. We will never understand God's Plan for us, but he dealt us this hand for a reason. We will make the best of it.

Below is a reading a friend of mine with a Special Needs child passed along to me when we learned of Lily's diagnosis. The goof-ball I am... I did not read it until tonight. It had an impact on me. I thought I would post it here for others to enjoy.

(BTW... the capable, holy and worthy reference above applies exclusively to me. Anyone who knows us realizes Julie is there but wonders about the knucklehead she married.)

Jason

WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland??
I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.
They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.