9 months old

Lincoln is 9 months old today! And we love him to death.

(at the doctor's office last week.)

I could probably sit and list off every single thing that he is NOT doing at 9 months that he should be doing and that I worry about every minute of the day. But, instead I'm going to tell you all the things that he IS doing: He's sitting up, almostrolling over, holding his bottle, grabbing his toes, holding on to toys better and starting to hold himself up in the crawling position. He's motivating and determined to MOVE and go, which is a gift that he has been given. Oh what a gift that we are so grateful for. He's determined and works SO hard at everything he does. He is smiling and laughing and melting people's hearts. And he sure does inspire us to do better. He babbles and has started blowing rasberries (which is really fun to clean up when he decides to do it with food in his mouth). Oh, and he loves chewing Gumby's head off! We love you Linc.

And another photo shoot

Just realized I never posted these, but here are some pictures that Tysha Carter, owner of http://littleredwagonphotography.com/ took of Jezelle (4 years) and Lincoln (6 months). They weren't very cooperative that day but we at least got a few good ones. Tysha sure worked hard!

Confessions of a Sad-o-holic!

(I often wish I kept a journal but I just don't these days. And so this sometimes is just going to have to be where I put down my thoughts.)

As strange and twisted as this may sound, I have always sort of enjoyed reading books, watching movies and now following blogs that are kind of sad and depressing. I know. Weird. When I was in high school I loved reading books about teenagers who were struggling with addictions, or illnesses, or about Special Education teachers who had intriguing yet very challenging students on their caseload. My mom would come into my room and I'd be crying, while reading a sad book. And now I love watching the show Intervention, and I'll admit, I kind of like following people's blogs that seem to have a more difficult life than me, or who are struggling with issues that seem worse than what I'm dealing with. There. I said it. However, through reading these blogs, watching sad movies and reading depressing books, I guess I kind of find myself grateful for my trials, my struggles and my situations. And although one may argue I have it worse than them right now, there seems to always be someone worse off than me, in my eyes. I guess that's why we have to always put our faith in God and realize that He is the one who knows what we can handle and what we cannot; and why we are all given such different trials throughout our lives. And sometimes that's a reminder that I need lately. I need a reminder that I'm not the only one with struggles and trials in life. And so I read people's blogs that seem more sad than mine. I know, strange.

I am definitely going through a grieving process right now, regarding Lincoln's developmental delays, and diagnosis. I am beginning to realize that this is not going away any time soon. There is not a quick fix and Lincoln will most likely have many years of therapy, and doctor appointments, and school team meetings. And somehow I got signed up as his 'case manager' for all of this, without my permission or acceptance. Yet through all of my anger and sadness right now, I try hard to see the blessing that have come from this trial, through our sweet, sweet boy. I try hard. Some days are better than others. Some days my life seems worse off than others. Some days I feel like this cannot be happening to ME. And yet it is, and it does. And so I try to recognize the blessings.

One huge blessing and strength to me in my husband. Throughout the past 8 months I have said to him numerous times, "I wish I could be more like you!" because through all of this, Shane is the one who has remained the rock. He is the one who has had the faith, who has been an incredible example of unconditional love and who feels it will all be ok. He is the one who continually reminds me that no matter what happens with Lincoln, or how he progresses that we will not love him any less. And so why should anything else matter?

People say the dumbest things sometimes, and although I realize it is done with ignorance and they mean well it can be so annoying. And that's when I feel the angry rise inside of me. An anger I have never felt before now. I have developed a serious temper as of late. And then there are those who I am continually surprised by, because their words, questions and advise are so very eloquently stated. And then I feel calm. And I hope I can be like them some day when I come across someone who is going through a difficult situation. I was talking to a dear friend of mine recently about Lincoln and she got tears in her eyes and said she just didn't know what to say or how to act. And I told her, just like that! And so I found the perfect advice on one of my "sad blogs":

"When you have the urge to speak, listen. When you feel like your job is to point out the good news, wait. When you have the need to wrap up our experience, please don’t. For real, loving care is the willingness to sit with someone and remain with them in their pain. To hear their fears and sorrow. To say with your actions, “I don’t have all the answers, but I’m sorry. And I am here.” '

Well said. Sometimes I want to scream when all I do is think about Lincoln and his development and I wonder why no one else is talking about it. But then, I kind of don't want to talk about it at all.

And then sometimes my anger comes from the fact that I can't seem to just accept this situation for what it is, and I wonder why not when others, like my dear husband, have. And I look at Shane and I wonder again why I can't be more like him. Why I can't seem to see the blessing every day, every hour, every minute. And I read upbeat blogs, to remind me of these blessing I have been given, about mothers who feel so privileged and lucky to have a child with disabilities and I wonder why I don't feel like them. I don't feel special or important and I certainly don't feel privileged or lucky. And then again Shane reminds me that they too have their bad days. They just might not blog about them (I'm not convinced). And he says it's ok to not always feel lucky to have the trials we've been given. And tells me everything will be ok. And I lean heavily on that. On him. And on his faith.

So with that said, and onto a brighter note- onto those blessing that I do like to remind myself of, this Lincoln kid is one little angel! He melts people's hearts where ever we go! At first I thought people were just being nice. But then I realized that his sweetness and peaceful demeanor is contagious and people just can't get enough of him. It can't even really be described in words but everyone who holds him can feel it. He really is an angel on earth. And people are drawn to him.

And what amazes me most about this little guy is that he knows way more than we all know!! And he is the one who has accepted this life and these trials. And, then I think to myself, "thank goodness he was born into our family, and not in a village in African, where he probably would have starved to death from lack of nutrition, and where he would NOT be getting the therapy that he needs." Thank goodness. And those are the moments where I feel lucky. And oh so blessed.

And I think his cousin Eli knows it too because holy cow, Eli adores him! They were for sure bestest friends in heaven, before coming here to earth. And that I do know for sure. And I do feel very lucky to know that. And to be Lincoln's mommy.

Thankful!!!

I'm blessed to have this little turkey in my life!

And for these ones too!

We had a nice Thanksgiving!

(Jezelle set the kids table all by herself- pictured below! She kept asking for a mattress, telling Mimi she needed a mattress for the table. Ohhhh she wanted a table cloth).

. . . Our first WHITE Thanksgiving I can ever remember having! It was beautiful!

Linc's cyst and the future PT

Update: We found out last week that Lincoln's cyst is entirely enclosed in bone so for now surgery is not necessary. YIPEE!!!! They don't think it will grow anymore and just get smaller and smaller as his head grows. There is a possibility of it continuing to grow but it's not likely. They will check it again in six months just to make sure it's not growing. Again THANK YOU for your prayers. They were answered, I am sure of it!!! I was so worried about putting him under general anesthetic for the scan but was told it would be absolutely necessary. When we got there though, the nurse said we could try and get him to sleep instead of putting him under!! Lincoln never ever takes a binkie, but he did that day! We swaddled him up, stuck a binkie in his mouth and he went to sleep within 5 minutes. We laid him on the table, they did the scan and we were on our way!!! After that I thought I would maybe try to get him to take a binkie again but he has had no interest since!

Lincoln works so hard during therapy and Jezelle's new favorite thing is to play "physical therapist". Yup- most kids play house, mine plays physical therapist. She gets a piece of paper and a pen, and then likes Lincoln to sit in all of his adaptive chairs and equipment so she can tell me what exercises to do with him. It's pretty cute. She sounds exactly like Lincoln's real physical therapist- who comes to our house every week. Last week the PT gave Jezelle a real sheet of paper, from her work, that Jezelle could take notes on. Oh boy was she excited! Who knows- maybe she'll grow up to be a physical therapist!

Jezelle absolutely LOVES to make her little brother laugh.

Lincoln works so hard to do all of his exercises but when he's done,

he's D-O-N-E!

The Swing

When Lincoln started physical therapy his therapist, Katie, asked me what was most important to me right now for him to be working on. I told her I wanted him to be able to hold his head up. I remember with Jezelle life got much easier (and we were all much happier!) when she could sit up and hold her head up well ...and we have finally arrived at this moment with Lincoln! ...Of course now I have a much more extensive list of things I want him to be doing, but for now I'll savor this moment. And now finally he can enjoy himself at the park! He loves to swing.

And although a bit wobbly still, he can sit up!

CT scan

Tomorrow we take Lincoln into Children's to have the bump on his head looked at. He's getting CT scan done (update on this situation below). I worry because he will have to be put under general anastasia but have to keep telling myself that this is normal and "routine" for these doctors. No biggie, right?!! Sure.....

The other day we were driving in the car and out of the blue Jezelle said, "Mommy, is Lincoln growing better??" I forget sometimes that she's processing all of this as much as we are, just in a "almost 4-year-old" way. One thing I know for sure though is, these two sure do love each other! Jezelle has figured out how to make Lincoln laugh and loves doing it. He adores her. And I adore watching it!

Update on Lincoln:

(this photo was taken a month ago when we had to rush Linc to the ER because he was throwing up blood! For some reason they weren't too concerned.)

Most of you know the following info but for those of you who don't, here is the latest news on Lincoln:

Long story short: Lincoln has had a bump on the side of his head since he was born and ever since all the doctors have said it's a hematoma (just a cluster of blood cells- which is no big deal) and that it will go away. But it hasn't so my pediatrician (who is amazing, thank goodness!!!!!) sent us to the craniofacial clinic at Children's Hospital yesterday. The surgeon took one look at Lincoln and said 'that's NOT a hematoma!" He thinks it's a cyst or some type of a benign something, so we need to have a CT scan done to look at the actual bone before a plan is made (since all we have right now is an MRI that doesn't scan bone very well). Depending on what TYPE of cyst it is he will have to have surgery. The surgeon said it might not be a big deal and we would just keep an eye on it (if it's IN the bone), a little minor surgery if it's above the bone (outpatient, one day...) however, if it's below the skull than we will have to involve a neurosurgeon since they would have to DRILL a whole in Linc's skull to get it out.

We have been so incredibly blessed with amazing friend and family and since everyone is always asking us what they can do to help, for now, all we'd love are prayers sent Lincoln's way! I hesitated to even send an email out or say anything, since it might be nothing at all, but I thought twice when I have seen such incredible progress from Lincoln recently and I KNOW it's not by chance, but because of all the thoughts and prayers from you! And, let's be honest, regardless of how "serious" the surgery is, as a mom, I think I'll have a freak out if there is ANY surgery involved really. So for now, we're just not going to worry about it until we know if surgery is needed or not, and just pray that things will go as they are suppose to! Thank goodness the doctors don't think at this point there is any concern of the bump being cancerous! Again, we thank all of you for your love, support and prayers. We are so blessed!!!!!!!

love, Joie and Shane

5 1/2 months old

Lincoln turned 5 months old on my birthday and somehow August flew by without me being able to post about it. So, instead we'll post about him being 5 1/2 months old!

I know I've said this before but he is the love of our life! He makes us smile, and melts our hearts most every hour. What a blessing his presence is on our family. We love to watch him work hard as he gains strength and learns to do new things. He's a fighter, and so proud of himself when he accomplishes something . . . like rolling over! Yes- he's finally (kind of) rolling over! We're so excited to watch him do this and be able to hold his head up more while on his tummy. I took for granted all of these little milestones that came and went with easy when watching Jezelle as a baby. With Lincoln everything takes more time and a lot of practice. His mommy's patience is being tested, that's for sure!!! He started OT (occupational therapy) at the clinic I work at, which came in handy since I was able to hand-pick the best OT there to work with our sweet boy. She's wonderful and although the therapy session is for Lincoln, it's very therapeutic for me too! When I told Darlene, the OT, that we don't know what the future holds with his recent diagnosis, she smiled and said, "well, then his possibilities are endless, aren't they?" . . . I cried.

Oh therapy. It's a way of life for us now. And although I look forward to our weekly appointments, I dread them too. I love to see Lincoln make progress, and yet at the same time I am reminded of his delays and that never gets easy. When I'm feeling down I often turn toward my new blog obsession www.kellehampton.com She seems to somehow always post about something that I'm dealing with at that moment and then puts it much more eloquently than I could. After a therapy session one day I was reading her blog and she wrote, "(therapy) It isn't ideal and it is, in the beginning, a bit overwhelming. But somewhere along the line, it becomes a new normal. And it is what it is, so we make the best of it." Yup- well said.

AND . . . right at 5 months his first tooth popped up! It's his right front bottom tooth. It's now half-way up and it looks pretty cute! Jezelle didn't get a tooth until 10 months so we were pretty surprised to see it so early with Linc.

The Feeding Tube . . .

is out!!! Did I fail to mention that? I think I didn't want to jinx it but he is now gaining weight and doing well! YIPEEEEEEE! No tube!

Food!

Lincoln is finally starting to gain some great weight, after being on a hiatus after his tube was removed a few weeks ago. His mommy can breathe again! He loves his bottle and I think may even love rice cereal more!!! He eats it right up!!! We're so proud of him and the progress he is making!

4 Months old

"You were so very meant to be. And while I thought I had life figured out, I realize no one really does. Life is too grand to contain into the box I thought it should fit in. And it is made up of so much more than I thought I'd ever know. One thing is certain. You are ours, Little One. And we are blessed." -Kelle Hampton, kellehampton.com

. . . On Monday our baby Lincoln turned 4 months old. He is now 12 lb., 15 1/2 ounces (every 1/2 oz. counts!). He's getting stronger every day and his physical therapist (who comes every other week) is always amazed at the progress he makes each time she sees him. That's what we focus on right now- the fact that he continues to make progress. He has started to laugh a lot and makes the cutest cooing noises. It melts our hearts. We all stand around to listen. It makes our day! I love to listen to Jezelle talk to him, and say the exact same things I say to him.

To say this kid is loved around here would be an understatement. We are all pretty obsessed. Truly, he couldn't be any sweeter.

....but he's pretty much impossible to take a picture of!

and yes, I'm determined to get a picture of my two children looking at the camera . . . maybe someday it will happen!

can you hear her? . . . "just turn your head a little Linc Linc."

hm.....close!

Look! We did it! It's a miracle.

Our sweet Lincoln

I've been thinking about how to write this post for a week now, composing it over and over in my head; about what to say, and how to state it in just the 'perfect' way. I worry that I will never be able to truly express my thoughts or find words that are eloquent enough or powerful enough to describe the love we have for our sweet baby boy. And of course I then realized that it doesn't really matter how I tell Lincoln's story, for when I put it down in writing it will be so real. So definite. So defining. However that doesn't stop me from telling this story, because I want it documented. I want Lincoln to someday read this and know how much I love him. I want the world to know how blessed we are to have our sweet Lincoln in our lives.

And yet, this is probably one of the hardest things I will ever have to write in my entire life. Mostly because it's sad and amazing all at the same time. And so I begin to try and tell our story.

When I was pregnant with Lincoln and I found out we were having a boy I cried. I cried for joy and excitement, but I also cried because I was terrified. I knew the chances of having a boy with special needs was much higher than a girl, and I never ever wanted a child with special needs. I have worked in the field of special education for over ten years now and have had the incredible opportunity to work with the most amazing and inspirational families. They have lifted me up, given me hope and helped me be a better person . . . yet, I never ever wanted to have a child with special needs. I never ever envied those families no matter how life-changing their experience was or how blessed they felt for raising a child with special needs. I never ever wanted a child with special needs. But in ten years of working with families of children who have special needs I never ever heard a parent say that I would love my child NO MATTER WHAT. I have learned that for myself in the 3 1/2 months we've had Lincoln in our life.

I was instantly in love with Lincoln when he was born. And I loved him more each and every day I saw him fight for strength while trying to gain weight and get healthy. I loved him more as I watched him accept a tube being stuck up his nose and endure the heart burn he felt throughout the day. I loved him more as spit-up came out his nose and he learned to sleep in a new position so his apnea spells would stop. I love this kid so much I wonder sometimes if my heart will burst.

And I think the Lord has played a huge part in gently and slowly warming me up to the idea of Lincoln's needs and differences. When we learned he would be needing a feeding tube I cried. Everyone reminded me that it was temporary, that things would be ok, but I knew deep in my heart that there was more there than feeding issues. Next, we learned from an MRI that his brain had some abnormal and delayed growth (delayed myelination). That was a lot to take in, yet again the doctors told us they didn't really know what that meant for Lincoln's development. And then last week we learned that he has a chromosome abnormality on chromosome one- with both deletions and duplications of a specific place on that chromosome. Although I kind of felt sick to my stomach and wondered how we would get through this, I had been prepared for the blow. I knew deep down that Lincoln was different and had started to accept that since when I was pregnant with him. Somehow I just knew. Again, doctors don't know how his development will be affected and what his future looks like from having this chromosome abnormality. And so we take life one day at at time. We get out of bed every morning and celebrate each and every milestone he makes. We slow down and enjoy every smile he gives us and every giggle we hear from him. And suddenly the things that seemed important in life before are not so important now. Although I worry about Lincoln and what his future may hold, I also worry about how I will tell others the news and how those people will react. I worry about how he will be treated and what people will think. And yet, I worry about those same things with my sweet and typically developing child as well, so I guess that's part of being a parent.

What I have quickly learned through all of this is who our true friends are. We are so blessed to have amazing friends and an incredible family who steps in to help out without hesitation. People call or email to check in on how Linc is doing, to let us know they are thinking of us, and that means the world to us. And I must add that Shane has been the rock through all of this and continues to amaze me with his strength and faith in the Lord. And he too loves this kid more than life! My parents are incredible and I cry just thinking about them and the incredible love and support they have been. My dad said, "Well, what are we going to do, give him away? No. We will just love him for who he is. Always."

I was pretty upset when I learned the news about Lincoln's chromosome abnormality and wondered if I would just be sad forever. And then I found a blog that changed my attitude very quickly. http://www.kellehampton.com/. Kelle is my age and has a baby girl with Down Syndrome. She is an incredible writer and puts my exact thoughts into words in a much more eloquent way than I could ever state them. And so, for a few minutes I'm going to quote pieces from her blog that I relate to perfectly:

"A week. How can it already have been a week? I've thought a million times what I'm going to write here and how I'm going to begin and what order I'll put it in and I think I've been so afraid to come back here...so afraid of not doing justice this very precious night...of leaving something out...of attaching simple words to an event that is so far from simple, it might just not be possible. But I need to get it out. I don't know how it's going to come or if it will make sense, but I'm just going to write. And when I get stuck, I will pick up this tiny blessed life beside me and hold her tight. I will breathe her in and remember..."

"I will never forget my daughter in my arms, opening her eyes over and over...she locked eyes with mine and stared...bore holes into my soul. Love me. Love me. I'm not what you expected, but oh, please love me."

"I couldn't emotionally handle telling anyone and yet, strangely, I wanted people to know as soon as possible because I knew I needed the troops...I was falling, sliding, tunneling into a black hole and I needed as much love as possible to keep me up."

"Life moves on. And there have been lots of tears since. There will be. But, there isus. Our Family. We will embrace this beauty and make something of it. We will hold our precious gift and know that we are lucky. I feel lucky. I feel privileged. I feel there is a story so beautiful in store...and we get to live it. Wow.

The story has begun..."

And oh how we love this sweet little boy. Our sweet little Lincoln. We feel so blessed to be his parents and continue to have hope for the future.

Love

When I was pregnant with Lincoln I was told how much joy I would get by watching my children interact with one another. I was told, but words cannot even describe the overwhelming happiness it brings to watch them together. Since having Lincoln Jezelle has taught me more about unconditional love than I have learned in 32 years! I don't even think she notices his tube anymore and could care less that he doesn't always smile back at her or even sometimes act interested in her. She just keeps on loving, not matter what. He often lights up when she's with him though. He loves watching her and she loves him to death (almost literally sometimes when she squeezes too tight!). She always wants to be with him or around him and when people come up to see him, she runs over quickly to proudly announce that "this is my baby!" I've already seen her be very protective of him, especially when other children ask why there is a tube in his nose. Jezelle always responds matter of factly, "because that's how he has to eat sometimes." (Duh!!)

3 months old

Lincoln will be 3 months old tomorrow! Today at the doctor's office he weighed 11 pounds and 10 ounces. Good boy! Three weeks ago he pulled out his feeding tube and when they did an x-ray to confirm placement it was NG and not ND anymore. So, our GI doctor said to go ahead and try keeping it NG to see how he does with food in his stomach again (ND is placed past the stomach into the small intestine). Thank you Lincoln!!! It was meant to be because he showed us that he is able to tolerate feeds into his stomach! YIPEE!!! (However, since then he has pulled his tube out twice. And somehow I have gotten stuck putting it back in! . . . something a mother should NEVER have to do- way to traumatizing!)

Last week we met with our feeding therapist and the GI doctor. Together we came up with a new feeding plan to begin doing bolus feeds with Linc- a HUGE step in getting this feeding tube out! He's done fantastic with it! Bolis feeding is essentially feeding him in "meals" rather than having the feeding pump going 24 hours a day. So, he takes as much as he can from the bottle, and then the rest is pumped directly into his stomach, through the tube in a short amount of time (over about a 1/2 period). He's doing really well with this and takes more and more through the bottle each day. His feeding therapist, Jenn, is an angel sent from God! Seriously. We would not be where we are today without her. She's amazing and when she listened to him swallowing last week she said he sounds fantastic! His next swallow study is scheduled for the 2nd week of July. If he is no longer aspirating then, and is taking enough volume through the bottle than we can take the feeding tube out! Trying not to get our hopes up about that but definitely a light at the end of the tunnel. Right now Lincoln loves to:

look at his fish in his swing

hold his binkie in

hang out with his Daddy! He gives Daddy WAY more smiles than anyone else!