He's not sick...

Last night, I thought we were preparing to take a couple steps the wrong way. Landon seemed a little agitated after his nap. I blamed it on 2 year old mood swings. But then, as he was getting a feed, he vomited. It's hard to tell if Landon is sick or if it was a fluke belly issue. I took him to Jimmy's sister's house, as planned, and the two of us went off to Zumba while his uncle watched him until Jimmy got home. I came out of Zumba to find a missed phone call from Jimmy. Landon had a fever and wasn't acting right. The combination of Ibuprofen, a cool cloth and cuddles from Daddy seemed to do the trick. I came home to find a happy Landon. However, 1am greeted me with a feverish baby and a puddle of vomit on him and his area rug. I stopped his night time feed and prayed that this wouldn't turn into something bad. My prayer was answered when I woke in the morning to a fever free little boy! We were cautious in giving feeds- I slowed down the rate and gave him 2oz less. It worked! He tolerated his feeds and meds throughout the day so we went to his appointment with his Nephrologist as planned...

Landon's appointment with his Nephrologist is mostly positive but the beginning is always a struggle for our poor boy. He screams when the nurse tries to get his blood pressure, he continues as I undress him to get his height and weight, the calms down only to freak out when they place a bag around his penis to try to collect a urine sample. But, once we get through all of this, it's pretty smooth sailing. We have had the same nurse every time and the poor guy desperately tries to distract him and make it easier but it never seems to help.

His doctor came in with lots of positive news. She showed me his numbers from the lab work and reinforced what she had told me on the phone just days earlier. His electrolytes look beautiful and although his Phosphorus level was low, after increasing his meds, it was much better and in a good place. She said that even a small weight gain could affect his level.

She looked at his legs as he pranced around the room in a diaper and t-shirt. She felt his legs and arms and was pleased. She checked his ribs and said that there is no sign of Rickets in his ribs. She noticed a little bowing in his lower legs but nothing major. She mentioned the possibility of growth hormones (GH) but said that he is gaining and growing well on his own and that GH can exacerbate bow leggedness. Once his growth plateaus, it is something that we will want to consider.

We talked about his eyes. I have yet to notice any discomfort or light sensitivity that seems out of the ordinary. We gave an appointment with his Opthamogist on Monday. If he has any crystals then we will begin giving him eye drops. I have been told that many choose to start eye drops, not when crystals are present, but when there is discomfort. Landon's nephrologist wants to start as soon as crystals are found - not every waking hour, which is usually recommended, but 5 or so times a day. She said if we take care of the crystals while he is experiencing no, or little, discomfort, that the drops won't hurt when they are put in. This makes me extra nervous about Monday but it is what it is... I know the day is coming. I'm not looking forward to putting drops in his eyes but we are blessed that there is a way to save his eye sight and that he doesn't have to feel pain in his eyes.

We spoke a bit about the feeds, but this is something that will be discussed more with his GI doctor. Her guess is that the feeds will continue until we can communicate about food. We are limited now in his understanding and ability to communicate. One thing she said that I never thought about is that he actually is being weaned right now. He is bigger but his doctors are not increasing his feeds as we are meds. It's a good thing!

Another thing that I really appreciated was the feedback she gave. She reminded me of what she told us in the hospital... "do not treat him like he is sick." This statement runs through my head on a daily basis. She told me that the reason that Landon is thriving in this way is because we don't see or treat him as if he is sick. She said that we are entitled to rough patches but that our attitude is that he is a normal kid who has to take medicine- no big deal. It felt good to hear that. The last thing Jimmy and I want to do is handicap Landon. And we certainly don't want him to walk around feeling bad for himself. He is blessed in so many ways. That's the attitude we want him to show the world...

Our almost 2 year old!

Landon announced yesterday, as I tried to put him in his high chair for lunch, that he is a big boy and no longer requires a high chair. He did this by arching his back, kicking his feet, pushing the tray off the the chair along with his plate. Point taken.. So, I opted to place his plate on his little table and chair set and placed him on the chair. That worked just fine.. The problem is that Rocky is at eye level with his little table so this mommy has to be extra aware of where all parties in the house are while Landon is eating. I think we'll venture out to Babies R Us soon and look for a booster seat...

Our big boy is also working to expand his vocabulary a bit which is awesome! I think he is a bit behind with his verbal language although I think is right on target with receptive language. We read books before nap and before bed every day. He also asks for books to be read throughout the day so we do spend a good bit of team reading. He always seems to have a favorite book that he requests over and over again. Well lately, it has been one of those books called "100 First Words." It includes pictures and the word written next to it. It's not exactly fun to read but he gets so excited about it and is really learning a lot from reading it! Some words he repeats (cheese, eat, cup, key etc.. ), some words he repeats and points to where it goes (hat, shoe etc), some words he simply points to where it goes (shirt, shoe), some of the animal words he makes the sound for (moo, baa, woof, oink- although oink includes an "e" sound) and other words he just looks at me with a blank stare (strawberry, tomato).. Anyway, it is great to watch him catch onto to something each time we read it. And the proud look on his face makes it all worthwhile!

Last and certainly not least- we had an evaluation with a Nutritionist today. We are going to add this service to our early intervention plan along with Physical Therapy and Occupational Therapy. I think she'll be able to teach me some things in supporting and encouraging eating with Landon. Plus, she will weigh him when she comes. I tend to use the weight from his pediatrician's office since that is where he has been weighed since day one and it gives us baseline data from way back.. But, I choose not to brush off the fact that she weighed him, on her scale, at 21 lbs, 3oz!! Yes ladies and gentleman- Landon has his that 20lb mark! Now, we go to his pediatrician on April 6th for his 2 year check up so will confirm it then which will call for a celebration but, we weighed him completely in the nude (and he hates it as much at home as he does in the doctor's office) and she measured him- 31 inches!!! He has been measured at 29.5 inches for quite some time now and although he was wiggly when we did it, I don't think it's too far off!!! And, guess what... he is now on the growth chart for weight!!!! 3%!! He's not on there for height yet but she said he is so close! Lots of good news!! I'm amazed by the strides he has made right before he turns 2 years old- which by the way, is only about a week and a half away. Oh my goodness!!

My Nice Boy...

Landon has become quite mischievous... He tests boundaries and pushes limits constantly. And he gets this grin on his face right before he does something that he knows he shouldn't do. Jimmy says that it is only now that he knows what people meant, when he was young, when they said that he looks as if he's up to no good. So we will blame this on Jimmy!

But Landon also is really showing affection and empathy. There is something about a kind hearted little boy that melts my heart so I eat up the cuddles and hugs and kisses and "aww's"...

Today, I said "you have to listen to Mommy..." and "thats not funny" more times than I can count but a couple sweet gestures erased any frustration that I experienced. This evening, Landon was left in the play room a bit too long while I took a phone call. I came in to find a whole section of the train table in pieces. So, I reminded him that the train can't drive if the track is broken and then sat down to put it back together. He watched me for a minute and then walked to me with his arms stretched open and gave me a big hug. He did this every couple of minutes while I put the track together. Some may call it empathy, others manipulation but either way, he melted his mommy's heart!

Following the reconstruction of the train track, I put Landon in the bath tub. As always, he put the entire bag of toys (rubber ducks, crabs, octopus, a few plastic hippos and bath books) in the tub. We played as usual and after a little while I began to take them out. He looked upset so I told him to say "buh bye" to the toy I was holding and let him put it in the bag. So, each of the following toys got a "buh bye" from Landon, a kiss from Landon, a kiss from Mommy (he insisted) and tossed in the bag. We did this for at least 10 toys. No wonder he went to bed 20 minutes late...

Hard Work

Landon was supposed to go to see his Nephrologist this past Friday but the appointment had to be rescheduled because she had a family emergency. She was, however, kind enough to call me to check in. I was happy to report that Landon continues to do well. She commented that his electrolytes look wonderful. His kidney function is still at a wonderful place, his bicarbonate (which promotes growth) looks great... His phosphorus level was low again. The goal is to have this level at a 4. Three months ago, it was at a 3.4 which made us all very happy. When checked last week, it was 2.4. His doctor told me that even a small increase in weight, can affect how much medicine he needs to keep his phosphorus level where it needs to be. A deficiency in phosphorus affects bone growth. You may recall that Landon has Rickets. Often times, when you hear of Rickets, it is a result of a Vitamin D deficiency, but for Landon it is phosphorus. Now because Landon also has Fanconi Syndrome (kidneys pass substances through the body that should be distributed throughout the body), his body eliminates Phosphorus at a very quick rate. Not everyone with Fanconi Syndrome is affected in the same way.

We then began to talk a bit about his gross motor development. His Physical Therapist is very pleased with how well he is doing but I think things move a bit slower than was expected. I often wonder if Landon's hesitation with certain tasks is that he is a bit fearful and unsure of his ability and how much could be that his little legs really are kind of weak and maybe he experiences discomfort when trying to do certain things, as a result of the history of Phosphorus deficiency. Her response was similar to this.. "It may seem like Landon is behind his peers in a lot of ways and he may be. But, for a Cystinosis baby, Landon is off the charts." I felt a couple of ways about this- mostly I felt blessed that what we are doing for Landon is working- the meds, the feeds, therapy, school etc.. but I will admit that another part of me felt sad. It was a reminder that our little boy has to work that much harder to do what his peers can do.

We were at the gym a few weeks ago for PT and Landon was working with his therapist. I think they were working on stepping up onto a 2 inch high mat and I watched a child, probably around his age, step up and run across the mat and for a split second, I felt my eyes tear up. I guess I just want something to come easy for him.

I sometimes have to remind myself to change my thoughts. This was one of those times... Yes, Landon is going to have to work harder for some things but I hope that it gives him a sense of pride and accomplishment rather than resentment.. And we, he, is going to find something some day that comes so natural and is so easy for him. I just know it...

The Train Table

You may or may not know that Santa Claus brought Landon a train table for Christmas. I did lots of research before I gave him the list and decided on a small square train table that converts to a Lego table and is much smaller than the other tables I saw. Plus, it got awesome reviews. Unfortunately, Mommy chose wrong and Landon showed little interest in this table. His entertainment was taking the pieces apart and sliding them through the hole and then requesting (well, demanding) that we pick up the top of the table so that he could retrieve the parts. I admit that I regretted not getting (ahem, asking Santa)the larger table. My regret dramatically increased one day as Jimmy and I took Landon to Toys R Us to buy a birthday gift. He laid eyes on the larger train table and we couldn't pull him away from it. Well, I bargained with Jimmy and we decided to sell the table from Santa to a friend and we bought the larger table. It was the first big gift that we bought for Landon and Jimmy and I were so excited for him to wake up one morning to find his new present. It took us 2 nights to build this table and as Jimmy and I carefully placed the pieces in their proper place on the table we knew that we were in for trouble. First off, putting the track together was quite a task. We decided at that moment to do everything in our power to stop him from taking the track apart (particularly after we tossed the instructions in the garbage can). Jimmy watched me carefully place the train conductor with the train station and said, "this is going to make you crazy!" See, my husband is well aware that in my brain, everything has a place. There is a bucket that holds Landon's bigger cars that go on the "road carpet" that he has and the small cars go in another bucket. Balls have their own basket and small toys go in the drawers under the toy box. Well, the small toys go in one side and Mr. Potato Head and his accessories go in the other drawer. Do you see where this is going?

Now I will tell you that my child has picked up a bit on my neuroticism, but please make no mistake, Jimmy may not care which toys go in which basket but my dear husband, not long ago, asked me if my friend and I were making drinks while she was visiting because the bottles in his game room were out of place. He also knew that Rocky and a dog that came to our house to play with Rocky (yes, I used to have play dates for Rocky) was running near his grill because it was a bit crooked. Yes my friends, it's not just me...

Anyway, so here is my message to my beautiful little boy...

"Dear Landon,

I am so happy that you love your train table. But, is it necessary to take the train track apart, any time you have an unsupervised moment, and put it in the laundry basket or heaven forbid, in the basket that is supposed to hold balls? It really gets to a point where Mommy has no idea where the pieces belong. I don't mind so much that you want to put the gas station attendant in the place of the train station attendant, but must you make your train bust through the train station taking out all of the little trees and the people who are positioned so nicely? And the helicopter pad... how is the helicopter supposed to land when all that is there are poles that are meant to hold the landing spot? And on that note, the helicopter always seems to disappear in the drawer or under the train table. What do you have against helicopters? I'm sure you can understand that this causes your Mother unnecessary stress. I just hope that you an consider my feelings. That is all.

Love, Your Neurotic Mother"

Sweet Moments

Landon had to get blood work today so the day didn't start off on the best note. I so badly wanted to play outside and have fun with him this afternoon but had some errands that really needed to be done. So, he woke up and off we went. We first went to the mall to return something. I didn't take the stroller with us because I knew we'd be in and out. I think it may have been the first time that I went to the mall by myself without taking the stroller. He certainly enjoyed having the opportunity to roam around a little bit. He has become very interested in hats. I always say, "Landon, where does your hat go?" And he points to his head. Well, the mannequin in the store did not have a head, but did have a hat. He kept trying to take the hat and continued to point to his head.

Then he insisted on walking through the mall. I let him walk without holding my hand and in front of me, just a little.. We walked past the Dairy Queen and my obsession with vanilla soft serve cones got the best of me! We got a small cone with rainbow sprinkles on it to share. Now, Landon typically takes one bite of something and is ready to move on so I thought I would get the cone to myself. No chance, Mommy! He dug into that cone and savored every bite. We first sat on a bench in the mall. I was satisfied that he might be done so we ventured back towards the car. Well then he wanted to hold it. I had images of what he and the back seat would look like if I allowed him to hold the cone on his own, in the back seat. Plus, I wasn't quite done with my "bites" either! So, he sat on the car and we took turns licking our ice cream cone.

Then we went to Babies R Us because he needed diapers and it is close to the mall. I remembered that I had books to sell at Half Price Books so we went there first. With the whopping $6 I got for the books I sold, we went to the Children's section and looked for a new book. Books occupy a lot of time! Landon constantly wants us to read books to him. The decision to not put him in the stroller at the book store was a little complicated. I attempted to examine books to see if it would be something that he would like while he went running into other sections of the book store. Complicated, yet still a little entertaining. Remember, I'm not used to a little boy who can get anywhere by himself, quickly!

All in all we had a great day! Our errands turned out to be a lot of fun and the day ended with time at the park with Jimmy and our neighbors and a power walk for Landon and I. Well, as much of a power walk as we can do with him in his little car and me pushing it.

I am so happy for this nice weather to be here and am really looking forward to a summer of fun with our little guy! We have to make up for last summer!!

Nature or Nurture

I wish that everyone could see the Landon that Jimmy and I (along with close relatives) get to see. He's loud, he screams, he laughs and puts every part of him in that laugh.. He dances to Wiggles and knows exactly what the movements are for so many of the dances they do. He does a bear walk across the floor and has recently started to bend over and puts his head on the floor and hands up in the air. I'm not sure where he got that one from.. He has quite a little attitude and makes his wants and needs known to Jimmy and me. He hits the dog and when I tell him to be nice and use nice hands, he pats him and says "awwwww...." He is such a little character. But, when Landon is not around people that he knows well and sees often, he is very shy and very cautious.

His anxiety is definitely getting better and although it takes him some time to warm up to people who are not his immediate family, he does warm up. My heart melted recently... We were at school and were transitioning from one room to another. Landon wanted to "help" carry something that his teacher was holding. I turned my head and when I turned back, he was walking out of the room holding her hand. He also has become more "talkative" to people that are not us. He still speaks mostly "Landonese" with a few real words thrown in, but he will carry on a conversation that lasts several minutes. He actually will allow his physical therapist to pick him up and help him. He used to scream when she came near him.

So yes, he has made lots of progress. But still, so few people see the silly, fun little comedian that I am blessed to be around every day.

I was a very shy child so I tell myself that he is like me. However, I wasn't quite so mischievous and silly (ever!). That he gets from Jimmy. So, I try to comfort myself by saying that this is his personality... Or, it's a stage and as he gets a little older, he will become more outgoing. I can accept those things because really, there is nothing wrong with being shy and cautious. But, it is not comforting to think that our little boy has been affected by his experiences. I hope that he has few memories of the month long stay in the hospital. I hope that his personality is not shaped, in some ways, by this disease. I guess it is bound to be shaped in some ways.. But I hope that it is positive. I hope that this disease gives him appreciation for life- not resentment and bitterness. I hope this disease gives him courage and strength- not anxiety and self doubt. I hope.. I hope.. I hope..