"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.

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..

Happy Rare Disease Day..

Today is Rare Disease Day. A rare disease, in the United States, is defined as a disease that affects less than 200,000 Americans (www.rarediseaseday.org). Cystinosis affects approximately 500 people in the United States. Sometimes, when I actually think about this disease, and the fact that it affects our little boy all I can think is "Seriously?!" Today is one of those days. It all brings about mixed emotions. I'm proud of how far Landon has come, we have come, in the past 8 months. Yes, it has been almost 8 months since he was diagnosed. He is doing so well, but it still feels like a dream at times. That's why I don't let myself really think about it often, because I think I would go crazy. We accept the cards that were given to us and we make the best out of it. We wouldn't trade our son for anything in the world and are totally convinced that he truly is the sweetest, the cutest, and all around best kid in the world. He is a blessing to us. We are so proud to be his parents.

Jimmy was talking on the phone the other day and I overheard him telling the person on the phone, in so many words "I can't let myself think about him being sick and what's going on. If I thought about it like that then I'd be pretty messed up." It's not denial.. At least I don't think. Thinking about what may or may not happen, the fact that everything is a little more complicated for Landon and that he doesn't just sit at the table and have a meal with us but gets most of his nutrients from a feeding tube, and then he takes so much medicine, and that so many doctors know him so well... Thinking about the odds that two people who fell in love, who chose to welcome a child in the world had the same "messed up" gene...If we thought about those things on a regular basis, we may not have the same optimistic attitude about it all.

I shared something with one of the Cystinosis groups that I am a part of on Facebook the other day. Someone posted about feeling guilty as a parent who is healthy, in having a child who society says is not "healthy." My response was that I get it. I have been to the doctor a few times in the past 6 or so months. I fill out the intake form and always indicate that I have no health concerns and take no medication. I am a very healthy person. And when I complete these forms, I get a surge of guilt. Here I am, no health problems and when I complete these papers for my son, I run out of space to write all of the medications he takes (total of 8) and all of what he has been diagnosed with (Cysinosis, Fanconi Syndrome, Delayed Gastric Emptying, Hypothyroidism, Rickets- I think that's it). Another mother responded that God makes us healthy because we would be useless to our children if we had our own issues to deal with. Smart woman, right? She's right. I have been blessed with good health and I have a responsibility to take care of my health so I can continue taking care of Landon. Beginning on January 1st, I started to make some healthy lifestyle changes. It began for vain reasons... I wanted to lose about 20lbs and feel good about the way I look. But, it has become more than that for me now. I will be honest in saying that I've had good weeks and bad weeks and good days and bad days. But, I have lost over 10lbs now, have lost inches, am exercising regularly and have made some changes in my diet. I no longer drink pop (soda) and have stopped by food items that are high in sugar. I also drink a lot more water than I used to drink. I want Landon to see that exercising, eating a healthy foods and living a healthy lifestyle is just part of what we do. I hope to not only set a good example for him, but also to keep myself healthy so that I can take care of him. I owe it to my family.

So, friends, Happy Rare Disease Day (it sound strange to add "Happy" in there)! Do me a favor and send extra hugs and kisses to Landon today!

What a helpful little boy I have.. He is so funny and wants to be such a big boy. This evening, it started with his bath... I was getting him dressed and he automatically reaches for the cream that I use around his Mic Key button and a Q tip. We put a little bit of cream on the Q tip and he begins to rub it on his belly. He finishes, gets up and throws his towel in the hamper (without me asking him to). He begins playing a bit while I get his night time meds together. There were toys on the floor so I asked him if he wanted to put his toys in the basket- he does. Well, he put some of them in until Daddy went into the hallway closet and he rushed over hoping to snag a shoe or two out of the closet. We sat on the floor in his room and he chose several books to read. I suggested one or two and he quickly told me no as he shook his head from side to side. He chose his books and then sat on his Elmo chair. He no longer wants to sit on my lap in the rocking chair. After reading, I gave him Tylenol (I think he's getting his 2 year molars) and he insisted on putting the cap on and putting the medicine back in the box. I put him in his crib and he again, insisted on helping me put his meds into his tube. He then handed me the syringes, turned on his Sleep Sheep and laid down. I'm afraid that he will no longer need me for much at all by the time he is school age. He is such a character!

So what is going on with Landon? Well, I received a call from the Physician's Assistant that we visited with in Endocrinology. His thyroid levels are in a normal range now since he started the medicine so he said to continue doing what we are doing and that we will go back in 3 months. Good news!

He had a weight check on Tuesday. You know how we have been waiting not so patiently for him to hit 20lbs? He was 19lbs, 14oz! Can you believe it? His pediatrician and the nurse were even bummed!! I really can't be disappointed though. He lost 6 or 7oz when he was sick so actually put about 7oz back on in less than 2 weeks. I was so ready for a 20lb celebration this weekend!! Oh well- we'll wait until his 2 year check up so will be able to celebrate his birthday and 20lbs!

Here is some more good news. I don't even remember the last time Landon vomited aside from the few spit ups when he was sick. He used to vomit daily and we had to experiment quite a bit with his feeds and how much he could take in at a time and at what rate. I think he tolerates the medicine incredibly well!! I feel so blessed that he is doing as well as he is..

In more news, we now have a new Occupational Therapist. I may, or may not have mentioned, that Landon's former OT took a job and moved to Japan! Our main issue now is that Landon stores food in the side of his mouth. He has an interest in eating and asks for food, but much of the food stays in the side of his mouth and I usually have to dig it out. His new OT said that she doesn't think that he has a problem chewing or swallowing. She feels that he is not hungry because of the amount of milk he gets, but likes the food and wants to taste it so he puts it in his mouth but just doesn't swallow. She said that he is doing everything that she would be working with him on right before trying to get him to eat. He doesn't have a problem with textures, he isn't afraid to explore and play with food.. We just need to get him eating. Now, you'd think an easy solution would be to cut back on the milk and he would start eating more- that's what I thought (remember my experiments?). I guess it's not quite so simple. Once he reaches a weight that his doctors (primarily the Gastroenterologist since she is handling his feeds) are comfortable with then we will begin to wean and see how it goes. Twenty pounds used to seem like the magic number, but my sense is that it has taken so long to get here and we don't want to risk him dropping weight so we might still have time to go before we are ready for that. I hate the feeding tube, but I love what it does for Landon. He is thriving and I know that much of that is because he is getting all of the calories and nutrients that he needs.

Well, I think that is all for now. We have a fun filled weekend ahead of us beginning with Kidapalooza at the Convention Center tomorrow! Landon loves Barney and he will be there doing a sing along. I love this age!

Happy Valentine's Day (a day late)

First thing's first... Landon is feeling better, Jimmy's shoulder is coming along with the help of physical therapy and I am feeling better (I also caught Landon's bug). The Hartz family is well on our way to feeling normal again!
Now I have to say, I love holidays especially now that we have Landon, but always have. Yes, even the "Hallmark holiday" Valentines Day.. Half of the people I was exposed to (mostly through Facebook) feel like I do, but many who voiced their annoyance with the holiday and those who love it. Ok, if my husband was mean to me every day but bought me roses one day of year and I bragged that one day of year about his one kind gesture than by all means, bop me over the head and give me a wake up call! But to me, this day serves as a reminder to do something a little extra. Life gets in the way at times...I don't always have the opportunity to spend nap time making chocolate covered strawberries along with cooking a time consuming dinner, not to mention if I ate like that every day I would have more weight to lose than 15 pounds!
I want to Landon to grow up in home where he sees that his mommy and daddy do nice things for each other and treat each other well but there are certain days in which it is just a little extra special. And this doesn't necessarily mean spending a lot of money. So, when Landon gets older and has someone special in his life, I hope that he takes the time to make this person feel extra special rather than writing Valentines Day off as a silly "Hallmark holiday." He will certainly get an earful from his mommy!

Sick!

It began Saturday night. I put Landon to bed at 7 and ran out to do a few errands. Jimmy told me, when I called to ask him a question, that Landon was coughing a lot. I came home around 8 to find him still awake, coughing and he began to cry when I walked in the house. I went to check on him and decided to rock him a bit to get him to settle. He started coughing hard and threw up, not his milk, bit a clear substance. I stopped his feed and he ended up sleeping as he usually does. We were invited yo a birthday party on Sunday. He was acting normal but felt a little warm so I took his temperature- no fever. So, off we went to the birthday party. While we were there, he threw up that clear substance again. We left the party right after.. The rest of Sunday was a bit up and down. He was tired but seemed to act normal, but once he woke Monday, it was very obvious that he was sick. Symptoms? Terrible cough, congestion, sneezing, runny nose.. The poor boy has a heck of a time at night and staying asleep. He's so tired but can't get settled and eventually fights the whole idea of going back to sleep. His fever is not at all consistent and his breathing seems normal but we are heading to see his pediatrician this afternoon to check his ears and breathing just to be on the safe side. I will update with more info!

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Update: His pediatrician said that his breathing sounds good and his chest is clear, but he does have a ton of mucous built up. He, unfortunately, has an ear infection. Poor baby! But she said that the antibiotic should loosen all that yuck and hopefully help the coughing. No wonder the kid has had a tough time sleeping. He's usually a great sleeper (sleeps 7pm-7am and take a 2 hour nap during the day). The past two nights he has been up 2-3 times, napping less and overall exhausted from lack of sleep. He's down a bit in weight (less than a pound) which obviously bums me out but I completely understand why. Months ago I set a goal weight, I wanted to weigh under _______ (you didn't think I'd reveal my weight on a public blog, did you?!) by the time Landon hits 20lbs, well I thought he beat me to it, but it looks like we are reaching that mark right around the same time. I wish he did beat me to it, but he's still doing very well! We just have to get past this nasty bug! Thanks for caring, and I will update as the week goes forward! Hopefully he's feeling better by the weekend! We have his friend's birthday party to go to!!!!

All is Well!!

I know that I'm not updating as often as I did before. Please take this is a good thing. It just means that Landon is doing great and life is just normal. That's what we strive for! Well, not totally normal but it's not Landon. Poor Jimmy was playing basketball this past Sunday and dislocated his shoulder. He was so excited about starting up a basketball league with his friends and some family members, getting active and two games into it, it's over. The orthopedic surgeon that he went to recommended a surgery to reconstruct his shoulder but as of right now, Jimmy is taking good care of it and hoping that it heals within the next couple of weeks and is swearing off sports. His shoulder is pretty fragile, especially since dislocating it this time, and if he raises his arm up and out, the changes of it happening again are very very good. So that's what's going on in the Hartz household now... Poor guy, right?!

Appointments have slowed down which is soo nice! We go to Nephrology every 3 months now instead of months. Blood work for Nephrology is also every 3 months instead of monthly. Today Jimmy and I took Landon to get blood work for Endocrinology. He has been on the medicine for his thyroid for about a month so they want to see what his levels look like now. Poor kid. He HATES blood work. Who doesn't?! He screams and cries and then quickly says "buh buh" and blows kisses as we leave. And the band aid can't stay on much past the door to head out of the lab so we just hope that he's not bleeding much. Anyway, I'm not sure how often we will have to go to see the Endocrinologist but my guess is that it will be maybe every 3 months. We'll see! We have a break for a little while from Gastroenterology. His GI doctor wants to avoid having him in waiting areas because of flu season and so forth. We really want to avoid having him get sick! A virus for Landon could mean a few days in the hospital and we're not quite ready to go back yet. We still go for monthly weight checks with his pediatrician, but they are quick, close by and we usually leave pretty happy!!

Our little guy really is doing so well!! He is quite a character and is really testing boundaries. He's at such a fun, and exhausting age. You can tell that Jimmy and I are first time parents because we get such a kick out of these little milestones that he is hitting. I am just amazed at how well he follows commands. Now, I will say that sometimes he doesn't, but that's the rebellious Landon. I know this because he does the opposite of what I say wearing a big smile! The other day, the eraser from his chalk board was in our living room. The chalk board is in his play room, so I said, "Landon, can you put this eraser away please?" He took it, went strolling down the hallway (I followed because I assumed it would go in the bathtub or garbage can) and he went right into the playroom and put it back. I was so excited! He's also in a phase of loving to clean up, throw things in the garbage (things that belong and sometimes things that don't!) and put his dishes in the sink. Oh, can't he just stay that way?! He also likes helping me with laundry. If I say, "Landon, want to go downstairs and do laundry with mommy?" He runs to the door, puts his hands up for me to pick him up and squeels all the way down the steps.

On another note, we lost our Occupational Therapist. She took another job in (you won't believe this) Japan! How cool is that? Ms. Sandy will certainly be missed by not only me, but Landon and our dog Rocky. She allowed Landon to write with pen on her papers and allowed Rocky to jump all over her.. =0) We met our new OT this week and she seems warm, friendly and very knowledgabe. Landon actually sat for a moment on her lap (until she attempted to embrace him and then he quickly got up). He is definitely beginning to relax a little bit around people that he doesn't know well. As long as you don't try to hold him or invade his personal space, you're okay in his book! Our former OT and this new one are both very optimistic about him eating at some point and getting off the feeding tube. All agree that we need to take our time and see where he takes it.

Physical therapy is going really well!! Landon really seems to get along well with Ms. Melissa now. She can actually pick him up without him arching his back and screaming in protest. We go to a gymnastic studio every week during their free play. He loves it and is so funny! For as cautious as he is; he certainly has a bit of a daredevil side. He is so not like his mother in that way! He definitely gets that from Jimmy. I have warned Jimmy not to tell Landon about all the stunts that Jimmy and his brother pulled as kids. So, yes Landon walks on trampolines and maintains his balance even as Ms. Melissa bounces behind him. He walks up slanted, squishy mats. He is comfortably stepping up on 1-2 inch steps. There is a lot of good about Landon being in PT, but at this point, a major plus is that I am learning how to encourage and push him a bit. If he wasn't getting PT, I wouldn't think twice about him crawling up steps. But now, I am beginning to work with him on walking up and down our steps. We still have a lot of work to do, but he is moving right along.

I'm not sure if I mentioned this in a previous post, and I am way too lazy to check right now, but we decided to sign Landon up for the 2 year old program at the pre-school he is at. He will start that in the fall and will go two days a week for two hours at a time, by himself. OMG- I am actually going to drop my baby off at school, without staying, in only 8 months. They transition the kids, so I won't have to drop him off on the first day and leave. It will be a process! I hope he's ready! I think a bit of independence will do him good. Yes, he is only 2, but he's had a rough year (pre-diagnosis too) and I want him to learn to trust other people and to feel comfortable when we're not there. He is thriving at school and has learned so much! He is more interactive with his teacher and the other adults as well as the other kids. One funny thing happens at school.. He does great during "gym" (yes, they have gym which is basically play time in a room with a train table, balls, a sliding board etc) and then does really well during music when we are singing and sitting in a circle. But, the moment everyone stands up and the music goes on and we all run around and dance, he gets really upset and cries for me to hold him. And generally, he doesn't recover well from this until we leave the room and go to the class room. Once in the class room, he plays fine. I'm not sure if the noise and commotion is just really overwhelming for him. I struggle with how much to comfort, should I pick him up or should I encourage him to stand up.. I tried to move against the wall when the times comes so that no one is running behind him and around him, but so that he can see what's going on, but it doesn't help. His teacher is so kind, and said that maybe we'll change what we do a little so that we can ease him into it. On that note, I have never felt more unsure of myself as a parent than I do now! I constantly question everything I say and do with him. Should I let him stand on the couch to look out the window or should we be consistent about not standing on furniture, is he old enough to understand time out yet, what should I do when I tell him something multiple times and he still doesn't listen? He's at this weird age that I just don't understand. I get older kids a little more since I worked as a mobile therapist (although it doesn't mean that I won't have the same struggles), but at least I know what they understand.

Well, I think this little book I wrote, makes up for not posting for a little while. I will try to do better from now on, but please know, when I don't post, it probably means that all is well!!!

Big Boy

This is why I know that my baby is becoming a big boy:

* He is now wearing a size 5 shoe. The difference in the look of his size 4 shoes compared to 5 is crazy. He looks like a big boy!

* I had to put away his 12 month shirts because they wouldn't fit over his head and the ones that did, fit pretty snug.

* He pooped the other day and smiled (I could hear him), got up from the floor, brought a diaper to me and then ran away.

* He follows direction. Rather than walk aimlessly around when I tell him that it's time for a bath. He walks as fast as his little legs can go, into the bathroom. The cutest is when I tell him that it's time for sleep and to give Daddy kisses.

* He is becoming very good at doing his puzzles.

* He has added a few words to the list of what he can say.

* He's becoming helpful! He throws his dirty clothes in the hamper, sometimes even before I ask him to do it. He throws his dirty diaper in the garbage and likes to throw his dishes in the sink. When he gets upset, I can usually ask him to help me with something and it distracts him and makes him very happy.

*He watches his favorite television shows (Barney and Wiggles) and dances to some of the songs. It's not just dancing. He does the movements that they do and knows what is coming next.

I think I have more questions now for how to handle certain things and I feel less like I know what I'm doing than I have since Landon has been born. But, he is becoming so much fun! I can't believe that I don't have a "baby" anymore.

This writing was sent to me by a couple wonderful ladies in my life. I have a very emotional reaction when I read it. It really hits home. Be prepared, it may make you tear up as well. Thank you to those who have thought to send it to me. =0)

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This is a story a friend of mine who has a beautiful daughter with multiple disabilities, shares with others who wonder what it's like to parent a child with disabilities. It's an amazing story that really makes you think. No child, no life should be taken for granted. The story is by Emily Perl Kingsley who writes for Sesame Street.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo... David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
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Do I hate Cystinosis? Yep. Do I wish that Landon wasn't one of the very few in the world with this disorder? Absolutely. But Landon and Cystinosis have taught me so much. I have said this before, but I know that I would never appreciate each milestone that Landon hits in the same way that I do now. I would not know how good people are, and how many people are willing to reach out and help, pray and care about someone who they don't know very well (or at all). I would not know how strong I really am.. I would not know the extent in which I need Jimmy. He is my rock and when I feel like I am falling apart and I close myself off he can bring me right back without even knowing that he is doing it. I've learned that our families are hands on, right there and willing to do anything we need... anything that Landon needs.. I learned that our friends, neighbors and relatives will go into their own pockets to send money for the Cystinosis Research Foundation or for us to put away for Landon. They will plan fundraisers and helps us to raise awareness. So yes, I wish that Landon would eat like many others kids, and I wish that he didn't have to take medicine, I wish that he didn't have to sleep in his crib, play and watch Barney and Wiggles connected to a feeding tube and and I wish that incredible as they are that so many doctors, nurses, pharmacists didn't know us so well- but wouldn't it be a shame if we didn't experience all of this goodness and appreciation like we do?

On that note, I was thinking the other day about something I wanted to post. We are so so so blessed to have such wonderful people involved in Landon's care. His doctors are so caring, so available.. They call me back right away to answer questions or address concerns.. They are excited when he is doing well and smile as they watch him walk down the hall, carry on conversations as he speaks to them in his own language and let him play with their stethoscopes and computers. His therapists recognize when they should push him and when he needs a break. They give him so much praise and they encourage us all of the time. Our local pharmacists and the pharmacy technicians rush orders of medicine, call doctors, talk to us when we pick a prescription. They recognize me and my car when I go through the drive thru (yes, really..). The people at the medical supplies company and drug company deal with issues with insurance, mail me two weeks of supplies while they try to get authorization from the insurance company, call me back quickly, rush orders when I call a little later than I should! What would I do without so many people working so hard to make life a little bit easier for us?

We have been blessed in many ways... and Landon is an AMAZING little boy. I believe that there is a reason he is here and there is a reason that he was given to us. Our little boy is going to do big things. Just wait and see...