Learning to walk

Lincoln and his therapists have been working really hard on helping Lincoln learn to walk. It's so much work for both them and him! I thought I'd share a few pictures of the things they use to help him learn.


learning to use a walker

walking on the cute little treadmill. It's just his size! Katie, his amazing PT, puts a mirror in front of him, which he loves. He's always super tired after he does his workout on the treadmill.

we've been using the grocery cart at home, and weighting it down with things such as board games, to make it a bit heavier for him to push around.

Special Needs Spotlight

For those of you who missed it, Lincoln was recently the spot light on one of my very favorite blogs. Go here to read the story:

http://wearetheraddest.blogspot.com/2011/10/special-needs-spotlight-lincoln.html

The rest of the blog is amazing too! I love it!

http://wearetheraddest.blogspot.com

And he crawls!

Lincoln started crawling last weekend.  He is still pretty selective as to WHEN he chooses to do so but he IS crawling.  I cried the first time I saw him do it.  I'll never forget that moment.  One of the sweetest moments in my life.

First day of school

Lincoln's first day of school (co-op preschool) is below. Jezelle is a trooper and comes every week to help out! They both love it! We have a very amazing birth-to-three center where Lincoln is able to receive most of his therapy and services. We feel so lucky to have amazing therapists.

18 months old

It's funny how 'age' takes on an entirely different meaning when you're counting the age of a child with special needs. I remember celebrating and documenting each time Jezelle turned 1 year old, than 18 months, than 2 years, etc. but also feeling a bit sad because she was growing up so fast! With Lincoln I try NOT to think about each month that passes by because that just means another month that he's not crawling, not walking, not talking. It's another month that he falls further and further behind his peers.

And he's at an age now where people see him and ask how old he is, and then act a bit surprised when I tell them he's a year and a half. I then wonder if I'm suppose to explain why he looks or acts the way he does or if I should just let it be. The overly protective mommy bear in me wants to explain so people don't think strange things about him. But the logical side of me says it's no one's beezwax!! There are just so many situations, conversations, issues and struggles that go along with raising a child with special needs that you just never ever think of, until you're the one dealing with them.

So instead of celebrating his age, we celebrate each an every teeny tiny skill and milestone Lincoln meets. In his co-op today he imitated some of the actions to a song and I just about cried right there in preschool. I appreciate every single step he tries so hard to take, and every little thing he successfully picks up with his tiny hands. It's been interesting to watch as he makes adaptations, to achieve success with a body that doesn't quite work right.

And with every age arises new challenges and new discussions of how we want to raise our sweet Lincoln. Since our religion is such an important piece of our lives Shane and I had to really work together to make the first decision when it came to church. In our church the children go to nursery at 18 months. And both Shane and I questioned whether or not we should put him into nursery, where the adults didn't know how to read his noises, his cries, his body language, or what he is truly capable of accomplishing, without being mobile. And while it's only 2 hours of our Sunday, it was a discussion (of many I imagine) that we didn't forsee being an issue that we would ever have to work through. Luckily there are wondeful women that work in the nursery that have welcomed Lincoln with open arms but it's scary to leave a child with special needs with someone you're not sure will accept them and love them for just who they are. But here's our Lincoln, in nursery, at 18 months old. And he's just as happy as can be.

Co-Op Preschool

At the beginning of July Lincoln started attending a co-op preschool class at the Kindering Center (the birth-t0-three center where he receives all of his therapy and special education services). He loves it and I LOVE it! I love that he can be around peers, practice doing 'school' and his teacher is fantastic! I love that Jezelle can come too, and participate as a sibling and be welcomed with open arms. I want her to grow up being comfortable around children with special needs, and feel proud of being an amazing sister to a child with special needs. I feel like this class really promotes that. And although I did an internship in graduate school in a co-op toddler preschool I must have forgotten how cute and tiny everything is in a toddler classroom. Or maybe it's just because I think Lincoln looks so cute sitting in a wee riften chair, as shown above (the wood chairs that give more support than a normal chair for kids who have difficulty sitting up well).

motor room

and boy was he wiped out at the end of class.

Our smiley boy

Oh how we love this little boy. Sometimes I think my heart might burst.

Happy Father's Day!

. . . to a kind, patient, faithful and very accepting father. We love you!

Minor surgery

Lincoln needed an upper GI scope done to try and figure out why he sometimes spits up/throws up blood (not bright red blood but usually older blood, which looks like coffee grounds). I knew they wouldn't find anything so I insisted that if they were putting him under general anesthesia for that, we would have ear tubes put in at the same time so at least the entire thing wasn't a waste of time (and mommy stressing out that her baby boy is getting anesthesia). Lincoln has had 5 ear infections this winter and has been on antibiotics more times than Jezelle has in 4 1/2 years. So, we did something about it. He did well and came out a bit grumpy but recovered quickly! Phew! Glad that's over with. (I love the picture below because it gives you just a glimpse of how much this boy absolutely adores his daddy.)

his lovey giraffe went in with him and got a medical band too.

My Little Sweethearts

Below are some pics from Lincoln's 1-year-old photo shoot. But, I first have to share a really sweet story about these pictures. I am often amazed at how quickly Lincoln can draw someone in, and melt their heart but it's often his therapists who fall in love with him so quickly and I always think 'of course they love him! He has special needs and they love kids with special needs'. But I am continually surprised that people who don't even know him well at all can sense such a sweetness about him. A week after these photos were taken I went back to view them. The incredible woman who took the pictures, McKenzie, (mckenzie-photography.com) was starting to bring them up on her computer screen when she turned to me with tears in her eyes and said, "You know, I just have to tell you that when I was editing these pictures I just felt an overwhelming amount of love for this little boy and you can just tell what a sweetheart he is. He has so much love for his sister and it's obvious that he just gives off nothing but love to those around him." He sure does.

and of course some with his sister, whom he loves OH so much!

God's hand

"Having children with special needs is heart wrenching, faith building, and teaches you that you can do things never imagined”.

Since Lincoln's birthday a few weeks ago I've been reflecting a great deal upon this past year and all the trials and blessings that have come our way. It has most definitely been one of the hardest, if not the single most challenging year of my life. Yet at the same time, there is no way to deny God's hand in most every single detail of Lincoln's life so far. I'm amazed at the pick of doctors and therapists that we have been blessed with. We have had nothing but positive experiences from them all, and although most of them do not know each other, somehow many of them have turned out to be connected in one another's lives. Time and again the opportunity to meet or work with one therapist/doctor has then lead us to another fantastic opportunity or therapist. And although I'm discovering what it truly means to be my child's advocate, and how hard it is to be his case manager, I love that every single person who has met and worked with Lincoln has the same goal in mind: to help him! He's a pretty tricky little puzzle, that we are all trying to fit the pieces together to see what works best. And although when a therapist recently used the word "complicated case" to describe him (and then most likely saw actual steam coming out of my ears), it's true. He's a complicated little puzzle and really since no one knows just quite what to do with him, or how to make him tick, I must rely on the Lord to guide and direct all of us.

This post is mostly for me, to remember all the incredible people who have helped guide us through this past year, on this crazy journey since Lincoln was born. And there are just details that I have been remembering lately that I don't want to forget. And so feel free to skip over this post if you choose! It's boring.

I find it impossible to say that we have just 'happened upon' some of the most fantastic doctors and therapists in the medical field. I believe that each and every person who has worked with Lincoln in this past year is no coincidence. And I so wish I had taken pictures of all of these amazing people who love Lincoln oh so much!

Jenn is our feeding therapist from Children's hospital. The person who recommended that very first swallow study, and validated my concerns that something was just not quite right. She will stay in my heart forever and I am truly eternally grateful for her incredible knowledge and ability to work with babies and families like ours. We met her when Lincoln was just 2 weeks old, and I still stand firm in saying that she was an angel sent from heaven. This past week my belief in this was reassured once again, when I learned that the new recommended time to keep babies on NG feeding tubes is 2 months. It use to be 6 months but now they are finding that the actual structure of children's throats are changing and being damaged when having feeding tubes in that long, significantly affecting the way children orally feed for the rest of their lives. When Lincoln had his tube in for 2 months he failed his second swallow study, showing that he was still aspirating on liquids. The technician recommended keeping it in for a few more months. Jenn however subtly and 'off the record' told us to take it out. We did. At the time, he had had it in for two months. And he has not been sick once since then, due to aspiration. Multiple professionals pushed to completely remove all of his oral feeds when on the feeding tube but Jenn said NO. And so they agreed to let Lincoln take 1 oz, 4 times a day, orally through a bottle, yet made sure that we understood that was very risky. Jenn stood firm because she did not want Lincoln to loose his suck reflex. Multiple doctors were also pushing to put a g-tube in (feeding tube that goes directly into the stomach), since he kept pulling his NG tube out, and wasn't gaining the weight they wanted. But again, Jenn said NO and I strongly believe that if she hadn't been working with us, and helping Lincoln learn to orally feed correctly, Lincoln would have a g-tube in right now. Thank you Jenn!

Katie is the physical therapist (PT) from our early intervention center (Kindering Center) that we love, love, love! Since I've worked with multiple PTs in my jobs I was nervous about getting one who I would really respect and seek help and advice from. But Katie has been fantastic. She cares so much and it shows through her work with Lincoln.

In the beginning Linc didn't qualify for occupational therapy (OT) through our early intervention center, so I took him to the clinic that I work at, MOSAIC Children's Therapy Center, and since I know every OT that works there I hand-picked Darlene, to work with him. She continually sheds light on many of Lincoln's sensory issues and helps me to understand why he moves and does the things he does. She's also the one who, when I told her we weren't sure what the future holds for Lincoln, replied by saying, "Well then, his potential is limitless." She continues to believe in him and his potential. And really, I'm not sure he needs those positive thoughts and reminders as much as his mother does. She often lifts my spirits when I'm feeling down.

After a few months of feeling sorry for myself, that I somehow got a child with special needs, I realized that I had now been in the field of special education for almost 10 years and knew the resources I needed to help prepare Lincoln for a successful future. Duh! So, I got to work and put things into place for him. There is an amazing therapeutic equestrian riding center near by that I knew had a long wait list. I called when Lincoln was 9 months old. I was informed that the wait list was about 2 years long, and that it would be perfect timing for Lincoln, as they usually take children around the age of 2 1/2 to 3 years. I was inspired. I was also able to get him scheduled to work with an incredible OT who is well known across the country, Rosemary White.

There is also a fantastic feeding therapist in the area who I had wanted to get Lincoln into see and that was lined up all because Katie, our PT suggested we go to an intensive 8-day NDT training course down at the Children's Therapy Center in Kent. The feeding therapist turned out to be the one who arranged the entire course we signed up for, so connections were made there as a result. It's been a difficult year but we are blessed. And Lincoln lights up our life!

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.