"It's not funny Landon..."

Two posts in one day? I'm on a roll, right?! Ok, discipline... Landon's Occupational Therapist was here this afternoon and Landon was in rare form. The poor kid is still feeling the effects of his most recent cold so hasn't been eating all that well. He is still get the same amount of formula- thank God he is tolerating it and I didn't have to cut back on the amount that he gets at all over the past week. Anyway, I presented Landon with several different kinds of food in hopes that he would eat something. He had pasta with marinara- nope, shredded cheese, nope- grapes, nope... He put bits of all of the options in his mouth but would chew and it spit it out. Then he started throwing his food on the floor. I, and the therapist, gave him a stern warning and told him that it is not funny and not okay to throw food. I then told him that he would have to pick up what he threw once he was done eating. I do it this way because I don't want to interrupt feeding and distract him (despite him creating his own distractions. So he finished, I got him out of his chair and he picked up a grape and instead of throwing it away, he put it in his mouth and walked away. I directed him back to the dining room and told him that he had to pick up the cracker that he threw. He then takes the grape from his mouth and throws it on the floor. I told him that he had one more chance to pick his food up or he would go in his room for a nap right now, without reading stories... He proceeded to throw himself on the floor. So, I picked him up, took him to his room and put him in his crib. He screamed for a few minutes and then fell asleep. I am getting a peek at the trials of being a parent. My sweet, little compliant boy tests me over and over again throughout the day... He is very much aware of what he's doing. It's not simply a little boy who wants to explore. He does things that he knows he is not allowed to with a big smile on his face and a laugh. He stands up on his chair and smiles at me then laughs when I remove the chair; he lays on the floor in the kitchen and drinks straight from the dog's bowl. When I tell him no, pick him up and tell him to stay out of the kitchen, he runs to the living room screaming and laughing. My response to him, many times throughout the day, is "that is not funny." It all makes me giggle now (well usually...) but I have to admit that I am a little fearful of how this little guy is going to challenge me when he's older!

Landonese

As I posted last time, Landon has words that he uses but I certainly wouldn't say that he is talking and communicating as well as a lot of other kids his age. This morning he came into the kitchen with his hockey stick. After trying to push Rocky with it as if Rocky was a ball, I told him that if he pushes Rocky with it again I will take it from him. I then told him to go find his ball. He walks into the living room only to come right back. Our conversation went something like this... Landon: idunnowamabais Me: you don't know where it is? Maybe in your play room? Landon: oh ya (ya sounding like ra ra, as in a cheerleader chant) I don't know how else to describe it! Now did he try to say, "I don't know where my ball is?" I don't know, but it sure sounded like that. Jimmy and I were laughing last night. He got a race track for his birthday and we were making the cars race and at the start, we would say "1,2,3 Gooo!!!" Landon walked around for the rest of the night and this morning saying, "Ahh, twoo, Ahh Gooo!!" Before we know it, we will be having real conversations that not just mommy and daddy understand. Until then, we'll be entertained by Landonese!

Chatterbox

Remember, no news is good news. Things have been going so well! Life has been crazy and busy though.

Landon woke today with a runny nose and sneezing. I pray that it doesn't get worse because I do not, repeat- do not, want to have to slow his feeds again. After our first session with our new nutritionist, we decided to tweak his feeds. We increases the rate at night so that he is taking in more formula while he sleeps and added 1 ounce to his 8am and 12pm feed. The goal was for him to take in the same amount of formula, because he is gaining weight beautifully, but to eliminate the 3rd bolus feed at 4pm. It worked and we have been on this new schedule for about a week. There should be no reason why he wouldn't continue to gain because he is getting the same amount of formula, but I will admit that I am anxious about his next weight check. It seems too easy now!! He is definitely showing more of an interest in eating and is taking in more! We are no where near not needing feeds but this is a big step in the right direction.

His verbal communication is coming along too! He is really trying to repeat words. Today he came to me and said "na na." I didn't understand so asked him to show me what he wants. He went to the kitchen and wanted me to open the refrigerator. I did and he looked confused and said "nana." Banana! He wanted a banana. They were not in the refrigerator which is why he was confused. I may have mentioned this before but his receptive language skills are great. He follows direction very well and understands what we say. Despite these leaps forward, I called his case manager today to try to initiate speech therapy. On one hand, I know that kids develop at their own pace and I have learned, if nothing else, patience when it comes to Landon reaching milestones. However, the muscles we use to talk are the same ones we use to chew. Landon has not used these muscles like most kids have so is at a disadvantage. He may do just fine but I want to be proactive.

Feeding and talking are our main updates right now. We had a great Easter and Landon's birthday party was a blast! It was at Gymboree and was fun and very physical. He participated in almost all of the activities which was a big deal! He does everything a this own pace and is always cautious and safe. He is such a funny little boy!

We have a lot more upcoming events so I will have a lot to post about! One event being a wedding in which Landon is the ring bearer (this is his 3rd!)...So long for now!!!

Happy Birthday Landon!!!!

It is 9pm and on this day, at the time, 2 years ago I was thanking God for epidurals and waiting for the epidural that I should not gave gotten to wear off. I found out, only minutes after I got the epidural, that I was 10cm dilated. I remember that night so vividly.

I knew from the moment that I found out I was pregnant that the baby inside me was very special. He was conceived only a couple of months after we found out that my sister-in-law had. breast cancer. It was something positive during a time of so much sadness and fear. If you are not aware, by the way, Jaclyn kicked cancers butt, just like we knew she would!

I never imagined the adventure and journey that we would go through with Landon. I have never experienced such love, such amazement, such fear, such sadness, such am anger. Second to love, pride is the biggest feeling I have when I look at my boy. When Landon was diagnosed, I had no idea what life would look like by the time he turned 2. I wish I would have... It would have made the beginning of this journey easier. Our boy walks, he climbs, he goes to school, he walks up and down steps with help, he asks me for cheese, pickles and Pringles.

I'm not so fearful and angry anymore. I'm excited to think about what this year will bring but I am eager to hold on and cherish every moment with him. Our new favorite game is to chase each other through the house yelling. And then I hide and pop out when he tries to find me. Who does that? A parent and child of course.

As I write this, I look over at a dozen balloons, just waiting for me to release them into his room so he can wake up in the morning to find them. This is what it'll about- celebrating... everything- Landon, how far he has come this year, how far we have come, all of our blessings..

Happy 2nd Birthday to our beautiful little boy!!

Memories

I have mentioned my April Birthday Club group before.. It is a group of mommies who logged onto the Baby Zone Online Community and selected the group who had due dates in April 2010. We are still friends. They make me think, challenge me and make me laugh and smile daily. Today one of my friends asked a question in regards to quality of time with our kiddos versus quantity of time. She then asked what we hope that our children remember... So, I started thinking and typing.

I believe in quality of time spent versus quantity. I spend about 10 hours a day, most days with Landon (12 hours of sleep at night and a 2 hour nap). I'm not completely present some of that time. I make phone calls... I prepare Thirty-One packets to send out... I vacuum and dust. I wash dishes. I play on Facebook. Most of it is a necessary part of the day (ok, maybe not Facebook). But the quality of time, I hope is what he remembers.

I hope he remembers the nap and bedtime stories, walking to do errands as he sits in his car, singing and dancing to the Wiggles and Barney in the living room with mommy and daddy, walks around the neighborhood and playing at the park after dinner in the nice weather, playing football, hockey, bowling and basketball in the house with daddy; putting our faces on each side of the glass in the bathtub and giggling, riding his first rides with mommy and daddy at Kidapooza...

There is no denying the blood work, countless doctor visits, future hospital stays, therapies but, I hope he sees these things as just part of the usual ups and downs of life. I hope that those moments that touch Jimmy and my heart so deeply are the things that he remembers...

Not yet sparkling blue eyes...

Landon had an appointment with his Opthamologist today. I prepared to hear that some crystals are present. My stomach was in knots all day. I know the days is coming but I don't yet feel ready for it yet- drops, the reminder that this disease is progressive and that no matter how compliant we are that this disease will affect his body. The doctor asked me to sit in the chair with Landon in my lap. He shined a light and looked with his instrument. Then he wanted to attempt to have Landon put his chin on the piece of the microscope designed for it, with his head against another piece. Good luck, I thought. Landon strategically placed his head in place and sat still long enough for the examination to be done. His eyes are clear! Thrilled! Thrilled! Thrilled!!

Are crystals the worst part of this disease? Certainly not. But again, their presence is a reminder that I don't want yet. We go back in 6 months unless I notice changes in his eyes (rubbing them, extra sensitivity, a cloudiness...). I am thankful for this day. I wont allow myself to be concerned about 6 months from now. That's a big deal for me.