My Little Comedian

I cannot even count the number of times that Landon stood independently today. He raises himself from a kneeling position, not holding onto anything, and raises up to a standing position. You just have to picture it because half of the time, his legs are spread pretty wide apart and he gets a huge grin on his face. It's as if he is saying "Look Mom, no hands!" We make a HUGE deal out of it for one, because he loves positive reinforcement and two, it is a big deal to us! He even attempted a couple steps today only to fall into me with a scream and a big smile. It's only a matter of time, my friends. I wanted to get a picture of it but kept forgetting to grab the camera which was downstairs, and my cell phone memory card was being goofy so I couldn't take pictures with my cell phone. Finally when Jimmy got home and he began to perform for him, I told Jimmy to have his cell phone ready to take pictures. The minute Jimmy pulled his phone out, Landon sits on the floor, smiles wide and says "Chhheeessseee!!" It was clear as day. He continued to do that every time Jimmy picked up his phone.

This child makes me laugh from the moment he wakes up until the time he goes to sleep. Don't get me wrong in between, there are lots of "No Landon. Nice hands, please. Mommy can't hold you right now. Don't throw your food to Rocky. Stop. That's not okay. You have to listen to Mommy..." But, he really is a funny little boy. Examples? I'm glad you asked! =0)

* When I go to his room in the morning, he does acrobats in his crib for 5-10 minutes before I can get him out of the crib.
* He gets up on his feet and leans on tupperware containers/baskets that hold books and toys and flies down the hall way, pushing them, with his little bum up in the air.
*When he becomes to rough and I have to remind him to use "nice hands", he quickly pats the object that he was just hitting (usually its Rocky) and says "awwwwww..."
* When he no longer wants to eat his food, he throws it to Rocky. After being told not to, he looks us straight in the eye, smiles and with the flick of his arm whips food on the ground all the while, continuing to stare at us.
* He knows exactly how to hold a camera to take pictures.
* His voice gets VERY loud when he says "hello" when talking on the phone. Plus, he looks down and pushes the buttons on the phone as if he is desperate to get a text out before we take the phone off of him.
* He dances at the first sound of music (or any noise really)..
* He winds up when he blows kisses and even blows kisses in the car and when he is alone in his room. It sounds kind of like "muuuuuuuuuaaaaaahhhhhh!!!"
* I put him on the couch and pulls up the blinds when I know that Jimmy is almost home. He yells "Daddy! Daddy! Daddy!" until Jimmy actually drives down the street and pulls in the driveway, all while pacing back and forth on the couch and laughing.

Ok, I guess I can stop there. What can I say? I can't get enough of him!

Thanks, but...

Ever since Landon was hospitalized Jimmy and I have gotten many compliments about who we are as parents. Jimmy walked in one day, after work, full of smiles, jokes and energy. I think he was singing or dancing to make Landon laugh. The nurse told me, as Jimmy did his daily walk through the hall of 7a, that she just wishes that all dads were like Jimmy. She was right but I guess this story kind of defeats my purpose of this post. Its one of my favorites though so you'll forgive me, right?

I received a very sweet and complimenting message from a great friend today. It brought tears to my eyes, and got me thinking. Am I really doing anything that most other moms would do? I don't think so. Jimmy and I love Landon more than we've ever imagined we could. We are blessed beyond belief to have him in our lives. He is beautiful and loveable and funny and curious and persistent and resilient. Believe me, hearing that I am a great mom always tugs at my heart strings because it is the most important job I have ever had, but moms and dads- you would do the same thing. :o)

Lots of Love for Landon

Our first big fundraiser for the Cystinosis Research Foundation was a big success! I don't have exact numbers as far as how much we are donating to the CRF in total or how many people were there, so I will have to update when I have that information. It seemed like everyone had a good time and lots of great prizes were won. We are overwhelmed by the generosity of those around us. Landon is a lucky little boy! We are all very blessed! Thank you! Thank you! Thank you!

Things have been quiet lately. Landon began vomiting daily again so I decided to go back to where we were with his feeds. We are now back to 4 tube feedings during the day with a lesser amount of formula, rather than 3 tube feedings with a bit more formula. I'm not sure what changed by his belly doesn't seem to be tolerating it well so we do a little at a time. It hasn't been so bad. It's just a little harder to get out of the house for any period of time. We also both have colds. Jimmy had it last week and we seemed to have caught it now. I'm wondering if he may have a touch of a virus that is contributing to a more sensitive belly. So, we are washing our hands lots and trying to take it easy so that it doesn't turn into anything else!

We continue on with Physical Therapy, Occupational Therapy (for eating) and Mommy and Me Pre-School (it's called First Experience) weekly. He's not yet walking but is so close! He stood independently for about 5 seconds 3 times while at school today. Any time now.. Although, I was thinking the other day. What is it going to be like to follow a child around, connected to a feeding tube, who is walking rather than crawling.. Hmm.. Landon, taking your time, Love!

That Can't Be Landon!

Today my mom and I took Landon to his appointment with his nephrologist. The appointment went well. We learned that Landon's levels look great. His calcium is a bit high (just a tiny bit) so she wants to keep an eye on that. His phosphorus level is at a 3 right now, ideally they would like to see it at 4. It has improved over the past couple of months. We will now see her every 3 months and will get blood work every 6 weeks instead of 4 weeks. It's a strange feeling. I like the reassurances that I get from seeing Landon's doctors regularly, but on the other hand, I love the idea of having a "normal" life and not going to Children's Hospital every couple of weeks. Plus, now that flu season is around the corner, I certainly want to stay away from hospitals in hopes to avoid a rough winter!

I have to say that I find much comfort in seeing Dr. Nguyen. For one thing, she was with us through our entire stay at Children's Hospital. She was one of the 3 doctors who sat in front of me on June 6th and told me that our son has Cystinosis. Today she saw Landon in the hall with my mom and said that she checked the schedule because she could not believe that it was Landon. She said that he looks wonderful and has put on so much weight. It's so good to hear especially since I am with him every day, so it's hard for me to see the difference.

We also got to meet another doctor in the practice, Dr. Ellis. He has a lot of experience working with people who have Cystinosis. He complimented our efforts and involvement in Cystinosis research and in the community. He was so positive and optimistic and told me about a man who has a son in his early 20s. His son is doing wonderfully and he said that he does not look sick at all. He experiences very little problems with his eyes because he has been so consistent with taking the medicine and putting the eye drops in his eyes. That was also very good to hear! It means that this disease does not have to get the best of Landon and that there is some control in all of this. Will it progress? Yes. Will crystals develop in Landon's eyes? Yes. Will he need a kidney transplant? Yes, not for a very long time, hopefully! But, his future looks bright!

Resiliency

Landon's Physical Therapist came to our house this morning. This was the second meeting. Landon did wonderfully during the first session. He was cooperating for most of the hour that she was there. He allowed her to touch him and sat on her lap. I could not believe it. I wondered if it may have helped that I was not there when she first arrived. Jimmy's parents were watching Landon so I got there a few minutes later and he had an opportunity to play with her without looking for me or wanting me to help him instead.

He was not quite so cooperative this time. He didn't even want me to do the tasks with him (i.e. supporting his waist to stand him up to get a toy). A big part of the problem was that the session began right before nap time. Not ideal at all! I talked about this with the therapist ahead of time, but we had no choice this week so we went for it. The therapist asked if she could hold him and if he would let her, in an attempt to build rapport with him. I told her that he would not, but that she could take him into his room or play room and that I would stay in the kitchen. It took him a few minutes to stop crying (screaming) but then I would hear silence. Music to my ears because I would love for him to be a little more comfortable with people he doesn't see all of the time. Then I would hear screaming again.. This went on for a good 20-25 minutes.

As soon as I heard, "let's go find Mommy. We're all done." I peeked around the corner to find her holding him and tears streaming down his face. He reached for me and once he realized that we weren't going to "work" anymore, he calmed down.

Melissa gave me some recommendations and positive feedback. He seems to be walking better (with assistance) this week compared to last week. She said that he has great toys to play with and that we should try to raise them a bit (particularly in his room) because he can easily crawl and sit to play with all of his toys. She commented on the number of toys he has and said that she doesn't have to bring her toys with her to our sessions *sigh* (I know this...). We have such generous family members and friends who buy and pass along their kids' toys to Landon! But, what she said next really struck me. She said, "I can tell that Landon has been through a lot, but he has really great coping skills for as young as he is." Now, I have worried about Landon's anxiety and coping in the past so it felt good to hear this. I asked her why she said that so she told me that even when Landon gets upset, he maintains his composure and then after a few minutes he just decides to deal with it. She said, at no point, did he seem comfortable with the fact that she was there and I wasn't, but he went along with what she was doing. He became upset when she tried to get him to walk and stand probably because he was tired and not in the mood. She also said that he is a thinker. He likes to figure things out and really concentrates on the task at hand. That is definitely Jimmy! What I noticed about him, which is a lot like me, is that he will continue to try to make something work even when we redirect him to do it the "correct" way. It's almost as if to say, "I need to find out for myself that it doesn't work." This has been reason for some of Jimmy's frustration. He says that I just don't listen. Sorry honey!

Anyway, I feel like I learned a lot about my son in the last hour. And, I am even more proud of him!

Little Setbacks

Today Landon had his 18 month check up. I was very anxious about it. He hasn't been weighed in a whole month and is eating now and I knew that if he didn't gain much weight, that I would be pretty upset. Everyone kept saying that it seems like he is bigger. I talked myself into that, but I admit that I wasn't surprised to hear that he only gained 3oz in a month. His 12 months clothes are still a little bit on him. I can see that there's no difference, but I wanted to! So, a 3oz gain for most 18 month olds (in one month) is pretty good, but Landon still has catching up to do. After leaving the office and thinking, I thought about the fact that I haven't been quite as consistent about him getting each and every feed. If we have something going on, I haven't been too concerned about him missing a feed. I increased his night time amount a little bit, and he is eating some now so I thought that it wasn't a big deal. I learned my lesson. In addition to sticking with his regular feeding schedule (no matter what the day is like), his pediatrician also suggested that I add another ounce or so of formula to each feed. She thinks that the fact that he is becoming more active might have something to do with it too. He needs more calories.

So, I have to say that I was pretty upset. I mentioned in another post that I seem to have a difficult time with even the smallest setbacks when he is doing well. I felt it again today. So, I was standing in the kitchen feeling pretty crappy and Landon began to cry. I told him that I cannot pick him up because I was preparing his meds and feed. He gets a big smile on his face and does the sign for "eat." Wow, Landon sure knows his mommy well! He knew just what I needed! I just love that little boy. I felt better after that.

Baby Blues

Landon's beautiful blue eyes are healthy, strong and free of cystine crystals right now!! Jimmy went to the appointment, prepared to hear that some crystals have developed and nothing! That's our motto: Prepare for the worst and hope for the best! At some point we will get the news that there are crystals and that he will have to begin using eye drops, but for now, not so much.

We will go back in 6 months or sooner if we start to notice him rubbing his eyes a lot, light sensitivity or see that his corneas appear to be hazy.

Thank you for all of the thoughts and prayers!

Proud Mama

What makes me the proudest and happiest mommy in the world?

1. We met Landon's physical therapist today. She said that he is doing so well and that he really is not behind in walking. She said that she wouldn't be surprised if he is walking by the next time she comes to our house which is next week! Of course, we are betting on it but it's nice to know that he really is close!

2. We also met Landon's occupational therapist. We are going to work on feeding issues with her. She also said, "I don't think you are going to need me for very long!" She observed him eating (goldfish, cheerios and a slice of cheese). Over the past couple of weeks, he has been open and exciting about eating! He tries whatever we put on his plate. The problem is that he often holds food in the side of his mouth, and of course, that he isn't yet consuming enough calories to wean off of the feeds. She said that she thinks that it's a matter of learning to use and manipulate his tongue. If food gets to the side of his mouth, she thinks that he doesn't know how to move it with his tongue so he just leaves it there. Once we help him with this but stimulating his tongue with different exercises, he should eat much more efficiently. She said that the fact that he is interested and attempting is a huge step and that we shouldn't have much more work to do from there.

3. Landon sat in a high chair at a restaurant and actually ate food (mac n cheese and french fries) and at an ice cream cone for dessert!! And he really seems like he is enjoying food and eating.

4. Landon has not thrown up in about two weeks now! He is pooping, thanks to the help of an over-the-counter powder and I think him not going to the bathroom was a big reason why he was vomiting.
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For those who have known Landon's story since he was 7 months- not eating, not going to the bathroom, vomiting- you can understand how happy this all makes us! It has been a long time since this was all normal. It has been a struggle for much of Landon's life so this is a BIG deal!

Tomorrow, Jimmy and I are taking Landon to see the opthamologist. I was feeling pretty anxious about this appointment. They are checking to see if cystine crystals have developed in his eyes yet. If they have developed, we may have to start putting eye drops in his eyes. They may wait until we notice that he is experiencing discomfort (light sensitivity, rubbing his eyes etc). Either way, his eyes will be affected at some point so it almost feels like a waiting game. Eye drops may not seem like a big deal, but at some point, he will need eye drops 8-12 times a day. I don't know if it will start off that often but it will come to that. It's just a matter of time. Landon's nephrologist recently told us about a guy with Cystinosis who was entering into law school (so probably in his twenties). He was consistent about putting eye drops in his eyes every waking hour (he set an alarm on his cell phone), and experienced no pain or light sensitivity. Then she told us about a teenage boy who walks in clinic every few months with dark glasses and a hat because his eyes hurt and are so sensitive to light. He has chosen not to use the eye drops. So needless to say, these eye drops will be VERY important. There is research being conducted so hopefully (fingers crossed) it will become easier and less time time consuming, but until then, that's what we have to look forward to.

Anyway, I was experiencing some anxiety about this appointment and fear that we are at a point where there is something else to worry about. But, I am at peace with whatever the outcome may be. If we have to begin drops, then that's what we do! So, wish us luck tomorrow and I promise to update!