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...

Big & Bad (well not Bad...)

We had our monthly weight check today. I was so sure that Landon got to 20lbs, but what I did not remember is that he was only 18lbs, 11oz a month ago so 20lbs would have been a pretty big jump. So, no our little guy is not yet 20lbs, but weighs 19lbs, 13oz. Ahh!! Just a few more ounces!!! So he gained over 1 pound in 1 month. Awesome, right?! Again, his pediatrician is very pleased with all the progress he has made. She is also pleased with how his speech is developing. She said that it sounds like he has a nice variety of words. I really should keep track of new words as he says them, but I'm just good at keeping up with it. His baby book is shameful! Anyway, the ones that he says on a regular basis are "please (pee), thank you (tank), cheese (used for for food and when you take a picture of him- hehe), no, buh bye (buh buh), eat, mum mum, and daddy. There are a bunch of other words that we think we've heard him say once or twice but I'm not going to count them because I could never recall them and because I tend to under report milestones until I'm sure that they happened!

Brooke (his pediatrician) asked how his mood has been. I told her that over the past few weeks, he has been super clingy, cries if I won't pick him up and kind of whiny. I told her that at first I wondered if he was cutting a tooth, but realized after a few days that I think we've entered into some new developmental world. Yes, what happened to my sweet, usually compliant little boy? She smiled and nodded her head. I told her that he is trying to tell me that he's boss and I continue to remind him that he is not. The past two weeks while at school, he's displayed a pretty serious cryfest when I wouldn't pick him up. Fortunately it hasn't lasted for more than a few minutes at a time when he realizes that he might as well give into my attempt to distract him. He had a couple major fits at our house because I either wouldn't pick him up or took something from him (No, Landon, you cannot walk around the house with the bottle of your prescription cream in your mouth). Part of us worries that the crying (to that degree) will lead to vomiting, but then we remember the words from Landon's nephrologist when he was in the hospital ("Don't treat him like he is sick.") So, we decide to take a chance. Fortunately he has vomited at all as a result of a meltdown. And now, as I ramble, I think I sound like we now have a little demon child on our hands. He's certainly not! My friend recently giggled when she witnessed Landon's usual "tantrum." I told him that he couldn't go up the steps and he laid down and covered his face with his hands- minor, I know! He is really such a sweet, laid back little boy who is testing boundaries. It actually makes me smile when I think about it all because it means that he is growing up, he has an opinion and he is learning how to express his wants and needs in a "big boy" way. Now, it's just a matter of Jimmy and I working with him so he learns how to get what he wants in a non-tantrumy way and how to express his emotions. Easier said than done, right?! We welcome the challenge!

Optimism and Hope

The title of this post feels very appropriate since it is Martin Luther King Day...

Well, I am feeling MUCH more optimistic since the last post. We are back to 3 feeds during the day and an overnight feed. Landon has actually made a good bit of progress in eating over the past few days. He asks (verbally and signs) "eat" all throughout the day. Last night, he asked to eat right before bed, so I offered him a piece of cheese. He ended up eating the equivalent of about half a slice of cheese. Not bad, right?! He also ate half a small container of macaroni and cheese yesterday and had about 8 bites of angel hair pasta and spaghetti sauce today. I am actually feeling good about these feeds too. It means that he is getting the nutrition he needs and any of the food he eats is a bonus (big bonus!). I know that he's not ready to be weaned yet and honestly, I don't know if I can emotionally handle counting calories and stressing about how much he puts, or doesn't put, in his mouth. I am really excited for his weight check this week!!

He has a new trick too. He holds food in his hand and waves it in front of our dog, Rocky, all while hysterically laughing when Rocky quickly moves his head back and forth and in circles. He is such a sweet and laid back little boy, but he definitely has a very mischievous streak in him. He certainly looks like his daddy and he acts like him for the most part, but he does have a little bit of his mama in him (the laid back part!).

On another note, I was asked to contribute to a handbook that is being created to distribute to families whose child is diagnosed. What a great idea! I think it'll be such a valuable tool for parents who are trying to figure out this whole Cystinosis thing. I'm hoping that we can get a hold of a copy. Anyway, of course I was honored to be asked to do this. I feel honored for all of the opportunities I have been given to share Landon's story. But, when really thinking about what I planned to write, the importance of a resource like this really hit me. I want to be honest but I want optimism and hope to radiate through. We've faced some hard times through all of this, but we have learned so much through it all and our baby is thriving! I know that this disease is progressive and that there are many hard times ahead, but it's going to be okay. I hope that a parent like Jimmy and I reads what I have to say and breaths a little sigh of relief. We still have so much to learn about this disease and we don't know what lies ahead, but its all manageable and there will be many many more good times ahead than there will be difficult times. I hope that I can express that to a family who just got the shock of their life. There is hope and a lot of it!

The past few days have been a bit of an emotional rollercoaster, all brought on by yours truly... Landon's Occupational Therapist was scheduled to come to our house on Wednesday at 10:30am. I knew if I gave him a feed at 8am (I couldn't bear to go into his room earlier to attempt to quietly start the feed because I wanted to just leave him alone to sleep), that he wouldn't be hungry when she came and probably wouldn't cooperate. So, I decided to skip that feed in hopes that he would be hungry and we could have a good session. I then decided to make pancakes for me to eat and for him to refuss (or so I thought...). My little man sat in his high chair, picked up a piece of the pancake and effortless put it in his mouth with an inquisitive look on his face. Of course we would spit it out or begin to gag (which has happened when he has tried pancakes in the past). Nope, no he didn't! The light bulb went off (just picture a goofy smile and a light bulb over my head). Maybe we can think about weaning him. Immediately, I get on the phone to talk to his GI doctor about my brilliant plan to skip his morning and late afternoon feeds and only give him a feed at nap time and the continuous feed over night. I sent Jimmy pictures of him eating with a caption that listed all of the what he ate and exactly how many bites. It's time!!!
The next morning I woke up ready to put my brilliant plan in place for day 2. Keep in mind, I had not yet spoken to the GI doctor. So what did Landon eat for breakfast, you ask? Nothing. I felt the wave of anxiety and disappointment rush through my body. I acted silly and encouraged him to take a "BIG BITE" for Mommy. He laughed, but no bites. So, I calmly took him out of his high chair, gave him a kiss and sat on the kitchen floor and cried. I was disappointed- not in him, but in myself for not learning my lesson before. Don't push him. Don't move too fast. Landon does things when he's ready.
A couple of hours later, while Landon was napping, I recieved a call from the GI doctor. First we spoke about the fact that he has started to vomit again recently. She increased one of his meds, although I am going to hold off because he has been okay yesterday and today. Then we talked about weaning from the feeding tube. I should mention that she has a beautiful French accent so everything she says sounds wonderful. Anyway, she reminded me that Landon has been doing so well. He is on a great developmental curve right now with his gross motor skills. He is slowly using new words. He runs around and yells like a wild man. And, if Landon wasn't getting enough nutrition because he wasn't taking in enough calories, we wouldn't see those things. He wouldn't have the energy to do it all. I had to be reminded that it's not just about him getting bigger (although I love the round face and the chub on his little legs), but it's really about his overall health and development.
I talked to Jimmy about it all and he is totally on board with keeping the feeds as they are. I'm just concerned that the longer he gets the feeds, the more difficult it will be to transition him to eating food. I've been told that it won't and I hope that it's true! But, my husband (who is very good at keeping my grounded and focused) said that yes, we might have a hard time but we'll deal with it. He needs the feeds right now and that's what we need to do.
After my pep talks and Landon waking from his nap, the two of us went to a local indoor play center and had a blast throwing balls, running around and going up the ramp and down the slide. And when we got home, I hooked him up to a feed. =0)
So what has my not even two year old taught me? Patience, appreciation (for all of the wonderful things that he is doing and for the time I get to spend with him), to live day by day and not worry so much about what may happen, acceptance (of our "normal" not others)... He's a smart little guy, isn't he?