My babes

I continue to be amazed at the love that Jezelle and Lincoln have for one another. I sometimes feel like Jezelle thinks that Lincoln is actually HER baby. She loves to feed him, pick out his clothes, help dress and bathe him, and help him do his therapy and exercises. She is just about as thrilled as we are when he achieves any tiny skill that we have been working on. It's pretty adorable. And I love when I hear her talking to him just as I would, or exactly how she has heard his therapists talking to him. Today she said, "Oh Linky- why can't you just hold onto that toy silly billy."

Sometimes I feel bad or get anxious about all the sacrifices she makes, and the ones she will have to make, being the older sister to a sibling with special needs. But the thing is, I don't really think that she minds at all. And I need to just remember that. She's way more "ok" with all of this than I am. And the thing is, I think she always will be. What a little super star she is. And what an incredible example she is to ME!

More birthday!

My parents were out of town for Lincoln's birthday so we celebrated again last weekend with them! My mom made super cute tiny cakes.

Lincoln isn't thrilled with frosting or cake, but he sure does love ice cream!!! The doctor said we need to put butter, cream, olive oil, and anything with a lot of fat into his food to try and help him gain weight (I know- lucky!!). He hasn't loved any of those things, but I think since we discovered his new love for ice cream, I'm just going to start putting that into his food every day. Forget organic fruit and veggies- we have now moved onto ice cream an cheese puffs.

Happy Birthday Lincoln

Our sweet Lincoln is 1 year old today. And oh what a year it has been! I think it has been the hardest year of my life but at the same time I can hardly list the countless blessings which we have been given as well. Lincoln is the light of our life. He has brought our family closer together, has allowed us to serve and has helped me realize what an incredible family and friends we are surrounded by, who have been nothing but supportive through every single trial. In just one year of life he has already taught me so many more lessons than I will probably ever teach him in his life. We love him to pieces and he truly makes my heart melt every single day.

I was worried that this birthday would be kind of bitter/sweet for me, reflecting back on what a difficult year it has been and the realization that Lincoln is definitely NOT functioning at a 1-year-old level developmentally. But honestly, the day was great! I have the greatest friends and family in the whole world! Both Sarah and Brandi brought over cupcakes so that Lincoln's special day didn't get missed (since I was still a bit under the weather from the appendectomy I had the previous day!) Good thing his buddy Quinn came over to help us celebrate!

yes, Lincoln has major drool coming out of his mouth in the above picture but I had to put this cute picture up!

Ha! I love the above picture. Lincoln has an entire cupcake in front of him and all Quinn got were some crumbs. Poor guy!

"I came to this party and all I got were some crumbs."

We love you Lincoln. We love that you have come into our family and have reminded us of what life is truly all about!

The laugh

Lincoln has the cutest laugh in the whole world . . . says his mother. It's actually really funny and he snorts a lot. It's contagious. When you hear it you can't help but laugh. Jezelle lives to make her brother laugh. If she finds something that makes him laugh she will do it over and over again until he has the hiccups from laughing so hard. Below is just one example. For some reason on this particular night Lincoln thought it was so funny to watch Jezelle brush her teeth.

One Big KISS!!!!!!

There is a local radio station here called 106.1 KISS FM. Since I graduated from college and moved home I have been listening to their morning talk show hosts- Jackie and Bender. Every spring they do a radiothon to raise money for Seattle Children's hospital. They call it "One big KISS for the kids". It's usually a 2 or 3 day event and they play really sad (and some happy) stories about children who are sick and have basically grown up living at Children's. They talk about what an incredible hospital it is and all the amazing things they do there! Basically the radio station does a really good job at tugging at your heart strings so that you'll want to donate money. .

. . you know the drill.

Well, this year their radiothon has a whole new meaning to me. I've always looked forward to listening to the stories, as I volunteered there in high school and did an internship in college. I have always known how blessed we were to have such an incredible hospital so close by and have witnessed first hand how amazing their facility is. But now, I REALLY know, because they have taken care of my son. My gratitude to the hospital has grown ten fold in this past year and I feel so incredibly blessed for the wonderful staff there, who have helped us get through these past 11 1/2 trying months and have quite frankly helped Lincoln survive.

Children's philosophy is that they will never turn anyone away. Hence why they rely so heavily on fundraisers. I feel so blessed to have insurance which has covered much of Lincoln's incredibly expensive hospital and doctor visits. However, in January we suddenly found out that the formula and some of his medical supplies which he has received for the past 11 months will not be covered by insurance. And quite honestly it's a bill that made me cry. And so with the advice from the financial aid office, we applied for financial help through the hospital and they have taken care of a significant portion of our bill. Although we still owe a substantial portion, some of it has been taken from us. And so again, the meaning of this fundraiser becomes even more significant to our family. It hits close to home because we are able to benefit from those incredible fundraisers and generous donations that people give.

So, now after my own sad story, if you feel like donating go here:http://kissfmseattle.com/pages/events.html?feed=332448&article=8031312

The small and simple things . . .

We pretty much appreciate and relish in most every single little milestone that Lincoln meets. The latest: riding in the grocery cart and sitting up in the tub (Jezelle is in heaven!)!

and ohhhh how this kid loves his big sissy!



Jezelle loves going grocery shopping with me. I on the other hand do not like going grocery shopping with Jezelle. But, the other day this tiny shopping cart was our saving grace. Thank you Trader Joes.

The funny things that Jezelle has said lately:

- every week after church she marches into our Bishop's office (like she owns the place) and politely asks for candy. The day after New Years, before he gave her candy he asked her if she had earned any money in 2010. She pondered for a moment and then said, "No, I just earned stickers." Good enough.

-at a restaurant the other night when the waitress asked if we wanted drinks Jezelle said, "Um yeah- I'll have a diet coke." Uhhhh no you won't!

-She says "oose" instead of "use". So, sometimes she will ask me if she can "oose one of my purses". I love it.

-Lately she often asks for makeup before she leaves for school so I 'pretend' to put on some blush, lip gloss, etc. The other day as we were rushing out the door, she said, "oh no! Mom, I forgot to put on any makeup."

She cracks us up all day long.

A Novel

Shane was playing with Lincoln on his belly a few weeks ago and somehow Lincoln slipped to the side of Shane and hurt his leg. At first we thought it just scared him because Shane grabbed him quickly so he wouldn't hit the floor. But then he started visibly shaking and screaming and we could not do anything to calm him down. After two hours of this we decided we should take him into the doctor. He screamed the entire time the doctor looked at him too, so of course they ordered x-rays. As if we needed one more problem added to the list. The x-rays did not show anything but they put him in a hard splint anyway. We soon realized that it wasn't his leg anyway, it was his hip, and we took off the splint. But don't worry- not before taking a picture of it!!! The ironic thing was, we had just been to the doctor's office the day before (and three other times that week!) because Lincoln has had such a terrible cold on and off for 6 weeks now. The doctor finally ordered a chest x-ray (which also turned out ok) so that occurred on Friday and when we showed back up on Saturday for x-rays you should have seen the technicians face. I spared her the confusion and said, "yes- we were here yesterday and we are back again today." For the next few days if we moved Lincoln wrong he would scream!! And this kid hardly ever even cries so it was the saddest thing to hear this cry of pain. We finally took him to an orthopedic doctor, to make sure he was ok. When the nurse called us back she said, "Wow! This kid's chart is a novel." Yup. That's our boy. Shane responded with, "we wish it wasn't."

While waiting for the doctor to see us, Shane and I started counting the number of specialists that Lincoln has had the "privilege" of seeing throughout the past 11 months. Here's the list:

• Gastroenterology
• Genetics
• Craniofacial
• Neurodevelopmental
• Neurology
• Cardiology
• Audiology
• Surgeon (regarding the cyst on his head)
• Orthopedics
• ENT (ears, nose, throat)
• SLP (for swallow studies)
• PT (feeding therapy and physical therapy)
• OT (for occupational therapy and sensory therapy)
• and of course the pediatrician (about every two weeks at least!)

Now for the list of procedures which he has had done:

• 3 video fluroscopic swallow studies
• 1 upper GI study
• 1 MRI
• 1 electrocardiogram (EKG)
• about a million trillion x-rays to view placement of his ND and NG tube (seriously too many to count, nor do I even want to know)
• 2 chest x-rays
• 1 leg and hip x-ray
• 1 CT scan

In a report I read last week it read:

"He presents as a child with a medical history including: failure to thrive; dysphagia; gastroesophageal reflux; developmental delay; mildly dysmorphic features; two chromosome abnormalities of uncertain clinical significance; recent ear infections. Please refer to medical records for additional information."

And that's the thing. The above is not all of it. There's more! And when I read these reports it makes me sad, overwhelmed, anxious and very worried. But yet, I must stop and remind myself of the lessons that Lincoln, an 11 month old boy, is teaching me. Despite the fact that he has therapy three times a week and usually at least one doctor appointment somewhere in the mix as well, he remains happy, positive, and full of life. He continues to be motivated, and works oh so hard each and every day. And he lights up our life. And as Shane keeps reminding me, he is probably not here so that we can teach him, he is the one teaching us, and allowing us to serve him.

I heard a question on Oprah last week, about whether or not people who have children are more happy than those who do not have children. The "expert" kind of laughed off the answer by saying parents are more happy when their children turn 18, and when I heard that I wanted to scream, "you are missing the point!!!!!!!" Children bless our lives by giving us, as their parents, the opportunity to give ourselves fully and completely selflessly to another human being. They are allowing us to know what it's like to give service, to think about others, and to love unconditionally. And that, in my eyes, is a very happy thing.

People often ask me "how is Lincoln doing," and although I know they mean well I sometimes don't know how to answer. "Uh, well aside from 3 therapy sessions this week and 4 doctor appointments, plus one x-ray he's doing really well." When a friend of mine asked me last week, "so, what are some of the new things that Lincoln is doing lately?" I realized that was a great question which I could answer. And so once again, Lincoln teaches me yet another lesson in life. Lesson #1893: I want to try to be more conscious of the questions I ask other people so the questions have more meaning and I am able to learn more about that person and what is really going on in their life.

More and more every day I believe that Lincoln was born into our family for a reason, and for a purpose. Although I often forget that and feel sad at times, I try so hard to focus on the positive, just as Lincoln does. I have my good days, and my bad days. I found a blog last week that read on the top of it: "who knew life could be so perfect living a path that wasn't planned". I'm not sure I'd quite describe our life as perfect, but I do know there is a purpose, and for that I feel blessed.