Wednesday, July 28, 2010

2 month check up

Levi weighed in at 9 lbs. 6 oz. today. The doctor and nurses were excited about how much he's grown. The oral vaccination didn't go so well. He has a sensitive gag reflex and got choked on it. The nurse got really freaked out, but he was okay.

I brought a preventative medicine checklist for Down Syndrome and had it sitting on the exam table. The doctor already had one in Levi's file and told me we were all caught up. He reminded me that he did a thyroid test last time we were there. It was comforting knowing he took the time to go the extra mile. Many pediatricians aren't aware of the extra tests that should be done at certain ages since kids with DS are more likely to have certain health issues. One example is the thyroid function test that should be done twice a year.

I was telling the doctor about how impressed the OT was with Levi's muscle tone. He stood up tall and said, "Well, I see a lot more 2 month olds than that OT does, and Levi is right on target." He thinks Levi is doing what a typical 2 month old child would be doing at this age.

My friend, Meredith, came with me to the appointment to help out with Adam (who was an extremely good boy). After the check up we had lunch and took Adam to play at the mall in the play area with big, soft toys to climb on. He had a blast skipping around and climbing on things. By the way, Adam is still sleeping in his big boy bed. We've gone through a few days of repeatedly putting him back in it after he gets up and runs down the hall, but tonight, he didn't get up once. It wasn't easy getting him to that point. Wes is so good to remind me not to give in, and it is that consistency that pays off.

This morning, Adam crawled into our bed around 7 and just laid there between us. I rubbed his back awhile, and he said, "Mommy, I love you."

Last night I replaced all the newborn sized clothes in Levi's drawers with the next size up. I just love putting larger sized clothes in the dresser and closet for my boys. It reminds me that time is passing quickly and takes me back to those days that I was longing for children. I hold up each outfit and savor the moment. It is in those moments that I am so thankful to finally be a mom. It is a very special time for me. I love having kiddos in this house...and yes, we want due time...

Tuesday, July 27, 2010

Levi William...Meet Miles William, your BFF

We had a special visit today. I recently made a new friend through DSACK. We talk, email and text several times a week. It was so cool to finally get to meet. Miles is 6 weeks old and is even more adorable in person. His mama and I enjoy each other so much that these boys are gonna be friends whether they like it or not! Ha ha ha!

Even though neither child was cooperating in this picture, I love it! Miles is like, "Stop the crying, dude! Just chill with me."

Monday, July 26, 2010

That's My Boy!

The OT (occupational therapist) came today and was so impressed with Levi's strength! She would just giggle and say, "He's so strong!" She gave me a brush to use on his mouth and tongue before each feeding to "wake up his mouth." It should help strengthen his oral muscles. I was glad she had me do it while she was there so she could watch because I wasn't using enough pressure at first, and it irritated him. I am sure it tickled. After I started pressing down a little harder, he was much happier and actually fell asleep!

Abagail came and spent the day with us. The boys both love her, and I have a hunch the feeling's mutual.

Adam has decided to add a microphone to his performance equipment. He uses a toilet paper stand. I used to have him put it back each time I saw him with it, but I was afraid we'd find it missing one time when it was needed, so I just cleaned it up and let him have it. We made other arrangements for our toilet paper.

Sunday, July 25, 2010

Levi's Big Debut!

Today was Levi's first time to join us for Bible class and worship. As I was getting ready and thinking about where we'd go for lunch, I thought, "WE ARE A FAMILY OF FOUR!" It was so nice to all be out together, and it was a lot easier to manage than I thought.

He drew a crowd, and it meant a lot to me that so many people wanted to see him. It is really comforting knowing he will be a part of a wonderful group of people that already accept him and will love him for who he is.

Big brother was pretty proud, too. He was happy to share the spotlight and behaved very well. And boy did he sing today!

Levi has a big week planned. The occupational therapist is coming tomorrow. His 2 month check up and shots are on Wednesday, and he gets his physical therapy evaluation on Friday. In case you're wondering (like I was), occupational therapy is for fine motor skills while physical therapy is for gross motor skills.

These song lyrics can to mind after taking this picture of Levi...

The color of the pure in soul
Like water shall fill the cloudless sky

Try to feel the splendor of it all
Embrace the honesty of nightfall
Try to feel the anguish of it all
Wrap yourself up
In every facet of emotion

Can you feel love
Can you feel joy
Can you feel pain
Got a feeling they're on their way
(lyrics to "Siren Song" by Erasure)

Ever watch a dramatic movie and love it even though it made you cry so hard? After watching Titanic, almost every woman in the restroom was bawling her eyes out while talking about what a GOOD movie it was. The sadness wasn't good. We liked it because of the DEPTH of emotion it made us feel. I have always loved "Siren Song" because it addresses the idea of wrapping yourself up in emotion and embracing it, good or bad.

I think Levi is going to bring a whole new depth of emotion to my life. I am sure there will be tough times, but the highs will be higher, and each and every one of his milestones will be cause for celebration.

Wednesday, July 21, 2010

I tried so hard to get a good picture to post. This one ended up being the best. I couldn't get Levi to smile, and all of Adam's bumps, scratches, and bruises are what stand out to me. He loves to be outside. Unfortunately, he and the concrete are becoming best friends. They meet several times a day.

Those Crocs Adam has on are really meant for warmer weather. I found them at a consignment shop and put them in the bin of shoes under his bed. He found them and can put them on himself since Wes moved the heel strap for him. Now he has these Crocs on all the time. He even had them back on last night after I put him in his pajamas!

On my way to the computer tonight, I stopped in Levi's room to check on him. He was squirming around and grinning at the mobile on his crib. He was so quiet, I thought he was asleep.

Adam is in his big boy bed tonight. I hope he does well. He hasn't slept in it for a long time. His pack 'n' play is set up beside the bed, and he just prefers to sleep there. I'd say it feels more secure, and it is something he is used to.

Three people from First Steps came to the house today to see Levi. We saw the same service coordinator & evaluation person from the last visit, and his physical therapist came, too. The physical therapist will do an standardized test and evaluate him next Friday morning. Today we set up his individualized family goal plan. For you teachers out there, it is pretty much an IEP for a baby. They asked what our goals were for Levi's first six months, and I said I wanted to prepare him for sitting up. I kept waiting for them to tell us what other goals we should set but finally figured out that the evaluator could only write down what WE suggested and they weren't supposed to give us any ideas. Once I figured that out, I RAN with it. Wes & I said we wanted everything from Levi being able to track objects with his eyes to making cooing sounds to being prepared to crawl. We said we want an OT to see him, and went on and on. I don't even remember everything we said because Wes and I just kept thinking of things. They wrote everything down and told us we have a great plan. I felt victorious when they left. We have more power with this therapy stuff than I thought we would, and if we aren't happy with a therapist, we just ask for someone else.

It is going to cost more than I thought, but will be well worth it. I love that people will come to our house so Adam can keep his routine. I also think it will be best for Levi to have therapy at home instead of a new place he is unfamiliar with.

I need to feed Levi one more time before going to bed, and I can barely keep my eyes open right now. I hope to get some more pictures posted before the end of the week.

Sunday, July 18, 2010


Yesterday I did my first seminar since I had to stop traveling at the end of April. It was a blast, and the evaluations the teachers left were awesome! So many kind words and compliments. I had a great day, but the best part was coming back home to my family.

I am so thankful that Wes is involved with the boys enough that I don't have to leave him notes or remind him of a bunch of stuff before I leave. He can do everything himself, and I can enjoy my time away since I don't have to worry. The kitchen was all picked up and Adam had a fun day with his Daddy. Levi took his bottles well, and when I came home, he twisted and turned his head towards my voice. He gave me a lot of smiles when I got him in my arms.

Adam crawled up in the chair to read a book with me, and it was a happy reunion for all. We all went outside for a little while, too. Here is a picture of the Moby wrap. I like to use it when Adam goes outside to play. That way Levi can join us, but my hands are free to push Adam on his swing & play with him.

Here is Levi lifting his head up! He's a strong one!

I double-checked & found out that I didn't make the changes I thought I did for comments. Now the setting is changed so anyone can comment without logging in. Please try it so I know if it works or not. Thanks.

Wednesday, July 14, 2010

Another book I've been reading is called Easy to Love, Difficult to Discipline by Becky Bailey. I got it to help with some research I was doing for work, and I am so glad I had it laying around on my desk. It sure came in handy this week.

Adam is an obedient, loving little guy and normally does whatever we ask. Every once & awhile he will cry while following directions b/c he doesn't want to do what was asked of him, but he usually is happy to clean up and do other things many kiddos would throw fits over. He IS testing his limits in some ways, but the thing I've been having the most difficulty with is the whining. He wants to be held a lot and will whine, "Hold you mommy, Hold you mommy, hold you mommy." As fast as he can, over and over and over. He does this the most when I am cooking.

After reading part of this book, I am talking to Adam about how he feels & letting him know that I understand. I offer to hold his hand or give him a hug instead of holding him, and he has really responded well. I think BOTH of us were much happier yesterday!

Kids understand so much more than most people give them credit for. I really try to value that and was thankful for the reminder this book gave to me.

Tuesday, July 13, 2010

Lately before I go to bed at night, I read a passage or two from a book called Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. It was given to me at the hospital in a bag of resources from DSACK (the Down Syndrome Association of Central Kentucky). I remember the feeling of denial I had when a social worker at the hospital handed me that tote bag. When we got home from the hospital, I hung the bag near my desk. Some days I would turn it around so only the blank side showed. I didn't even want to look at the words "Down Syndrome." I also remember opening this book on the way to one of Levi's doctor appointments before we got the final word on his chromosome test. I had to put it down because I started bawling. I just wasn't sure I was ready to go down this road, and we were still waiting to find out if Levi had DS or not.

Now I am friends with some of the moms in DSACK and met one of the awesome women who put that tote bag and its resources together for me. I am LOVING this book and really enjoy each mother's words of hope. It is funny how proud I am to be in the world of special needs just a few weeks after all those tears. I feel like I am part of a secret club that only certain people are invited to. That others without a child like Levi may not ever understand. One of the stories last night was an analogy that a mother made about being thrown in to the deep end of a swimming pool. She was frighted, couldn't swim and was choking and sputtering at first. Then she started treading water and slowly realized that she wouldn't drown. Finally she found that in the deep end she could dive and do somersaults, things that can't be done in the shallow end, and she said to others, "You don't know what you're missing, here in the deep end."

a little entertainment from Adam

Monday, July 12, 2010

I had a bad case of cabin fever today. We still have 2 more weeks before we can bring Levi out & about, so a trip to see Grams and Grandpa's house was in order. I am so excited that Levi is starting to fit in his clothes that I had to get a picture of him in this outfit and hat. It is only a newborn size, but it just swallowed him up until now.

Adam wanted in on the picture taking action. When he saw my camera out, he said, " it?" and jumped up beside Levi. He sure loves his baby brother. He gives Levi lots of lovin' every day. If Levi ever cries while he is in his crib, Adam turns on some music for him. The other day Levi was in his swing, and Adam kept bringing his toys and laying them on Levi's lap. He wanted to share. I am sure these boys will have all kinds of fun growing up together. I know Adam will continue to be a great big brother.

I have changed the blog so anyone can post comments without being a registered user. I have had several people say that they wanted to comment but couldn't. Hopefully it will be easy to do now. Give it a whirl...

Sunday, July 11, 2010

I took Levi to be weighed on Wednesday...8 pounds! Hooray! He is really filling out has even moved up a diaper size! We haven't given him any formula supplements in about 2 weeks. He is taking a bottle once a week to prepare him for the days I am out of town for work, and he is nursing beautifully (with no extra apparatus anymore)! Three cheers for Levi!

I remember being in the hospital struggling with nursing and having to pump and supplement after every feeding. The lactation consultant once told me that all the nurses were in the hallway saying that I needed to be giving Levi formula. I thought, "We'll show YOU!" It was a long, tiring process, but I am so glad he is nursing well now. I never even really thought about giving up. I knew he'd get there. It actually took Adam even longer to get the hang of it, probably since he was born so early.

The info given to me at the hospital about nursing a baby with Down Syndrome said that Levi would be more likely to be a "lazy" nurser because of low muscle tone and that he probably wouldn't naturally wake up and let me know when it was time for him to eat, but he cries to eat about every 3 hours. At night, he eats at 11 or 11:30 and although I set my alarm for 5am so he doesn't go too long without eating, he usually wakes up about 15 minutes before the alarm goes off.

Here's another impressive act. This is where Levi is when I lay him to bed at night...

And THIS is where he is in the morning!

He didn't get the memo that he's supposed to have low muscle tone!

I know he'll struggle in other areas and have his own difficulties to overcome, but it is a thrill seeing his strengths emerge already, so I had to brag. That's what proud mamas do, ya know!

Tuesday, July 6, 2010

The Burning Question

I keep getting the same question from people, and thought I'd address it b/c I never know quite how to answer it. Plus, I've wondered about it myself. The burning question..."Do you think Levi has a mild form of Down Syndrome?" I think people ask b/c they don't see the physical characteristics a person would expect, but then I wonder how many of us have ever seen a baby with DS. I know I never have. In fact, I haven't seen all that many people of any age with it. I just figure that no matter how mild it is, it is Down Syndrome...there's not much mild about that. I looked online to get insight on the question and found an interesting analogy.

One parent said that it is like being pregnant. You can't be mildly pregnant. You either are or you aren't, and the symptoms vary from person to person. Some people have morning sickness, some don't. Some have a lot of swelling. Others have no problem with that. Since Down Syndrome is the presence of an extra 21st chromosome. There really is no such thing as a mild case. You either have DS or you don't, but the symptoms vary from person to person. I read that there are more than 50 characteristic features of DS. Most have mental retardation in the mild (IQ 50–70) to moderate (IQ 35–50) range (most people range from 70-130). So maybe it would be considered a mild case if his IQ was in that upper range for DS, but then there are speech issues, social problems, etc. I think about Chris Burke, who played Corky on "Life Goes On." Even as highly successful as he became, his speech is a noticeable problem, and the physical characteristics are there. I am not saying that to put limitations on Levi but to be realistic. I know he is not going to be a typically developing kid (or a typical adult for that matter), and I am okay with that. Many kids with DS are now going on to higher education and making contributions to important workforces, and honestly, if I could choose a disorder for my kid to be born with, this would be it. I am okay with it...mild or not.

I read this quote the other day on Kelle Hampton's blog:

"Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so. One day, I shall dig my nails into the earth, or bury my face in the pillow, or stretch myself taut, or raise my hands to the sky and want, more than all the world, your return." (Author Unknown)

It goes right along with something I read the other day about stress. The suggestion was given to slow down and pay attention to your senses. What do you see, smell, taste, touch, & hear? The more you are aware of the details of the moment, the more you will enjoy what is going on instead of feeling stressed out. I am noticing now how beautiful it is to smell the sunscreen in Adam's hair, hear the birds while I push him on the swing, and feel the soft, soft skin on baby Levi's little cheeks. So pay attention to the details, and live in the moment. Life is good if we are willing to stop long enough to enjoy it.

And then...something to make an ordinary day something special...a lemonade stand!

One thing Wes & I never pass up is a lemonade stand. Some children down the street had one set up, & it caught our eye while Adam was running in the sprinkler.
It was Adam's first time to have pink lemonade. He kept saying, "Pink juice...Ahhhh."

Good stuff!!

Monday, July 5, 2010

This is my first attempt at posting video. I hope to learn more about iMovie. It is a very simple program to use. I think I'll have a lot of fun with it. It is just a matter of finding the time to play around with it and learn how to use everything.

We had such a nice day at home together today. Both of our cars were LONG overdue for a bath, and Adam was a great helper. He scrubbed and used the hose to rinse things off. As you can see in the pictures, he took his work very seriously. Just as we were getting started, Adam raised his sudsy cloth up in the air while I bent down to put mine in the bucket. I got a head full of bubbles before the cars got any suds on them! Wes got a good laugh about that! We worked for a while during Levi's nap, took a break to cool off inside when it was time for him to eat, and set him in his swing outside to watch while we finished up.

Levi made some new noises today, and his cry is getting more bearable. Wes & I joke that he sounds like a raptor or screaming banshee. We can't decide which.

I feel like I've suddenly climbed the mountain of adjusting to a new baby. I remember the same feeling with Adam. The first four weeks were so difficult. Then all of the sudden week five hit, and I felt at peace and was already looking forward to having another child. The first few weeks with Levi were tough in different ways...the shock of Levi's diagnosis & all the doctors visits made it emotionally draining, and I struggled with feeling like I couldn't give Adam the attention he needed while meeting the demands of caring for a newborn. Now it just feels normal to be reading to Adam while feeding Levi and juggling all the diaper changes and other needs they both have. (Although, I may change my mind about that tomorrow while Wes is at work. It is so nice having him at home this summer.)

Sunday, July 4, 2010

Yesterday, Adam & I went to a fun family get-together for the 4th of July. He loved the enormous sandbox. I think his other favorite part was the cake he got to eat for dessert. I enjoyed visiting with everyone, just wished Wes & Levi could have been there with us. I loved watching Adam play. He got to ride on one of those battery operated little cars and had me cracking up. He'd only push the button for a second or two at a time. He kept looking behind him, like someone was back there pushing him, and he had this wonderful, open-mouthed smile. So much of life is more fun now that I have this little guy. Without him, I would have been sitting around and talking, which is fine, but I felt so much more joy being out in the yard watching Adam experience something new. He is such a joy!

I can't get enough of Levi lately. I never want to lay him down. He was really alert today. When we lay him on our shoulders to burp him, he works so hard to lift his little head up. Then it bobbles around for a few seconds before he gets back into his burping position. His eyes are so big and deep that I just want to stare into them all the time. He seems to be interested in what is going on around him and gave his daddy a big gummy smile today! I can't believe he is over 5 weeks old all ready. All of these changes and stages of growth just fly past us. I want to take in as much as I can each step of the way.

Speaking of Levi, time to feed him again! Here are some pictures from yesterday...

Friday, July 2, 2010

Well, as you can see, I figured out how to get my pictures to show up like I want them to! Not an easy task, but it is worth the hours of research! I am really excited about it!

These are from yesterday. Wes had the day off, so we packed up towels, sunscreen, & diapers & headed down the street to Brooke's pool. We had a blast floating, splashing, and jumping in.

Since Brooke's youngest daughter, Sophie, already has a baby monitor set up by her crib, we were able to lay Levi down in the air conditioning most of the time while the rest of us played in the sun. What a great summer day!