Choose Your Battles

This morning I attempted to convince Landon to wear his cute, white tennis shoes to the park rather than the usual brown sandals that make his feet smelly! I was successful, kind of... He instead chose brown shoes that are not only a bit too big but clearly meant for the fall/winter months. As I reluctantly put them on, watching him beam with pride, I wondered how it happened that I continue to lose this battle with a 2 year old. Am I just tired and "giving in" to avoid a tantrum? Minutes later I told Landon that we were leaving in one minute and he needed to clean his toys up... I watched my little bottom pick his cars up and put them in one basket, the car track and put it in another (all the "right" basket) and take his ball and mitt in the play room to put them on the basket. I smiled... You must choose your battles as a parent.. Our boy behaves well in public, sits in time out and takes his consequence when misbehaving, he cleans up after himself and follows instruction pretty well... If choosing the shoes that don't go best with the outfit that I choose is where he draws the line then I can handle that... We are doing something right...

Imagination...

I cannot tell you how many times a week I stop and think, "I need to blog about this..." and it just doesn't happen. Life happens and blogging often doesn't. I'm not going to promise to do better, I will promise to try to do better! Last weekend Jimmy and I took Landon to Hershey, PA. We left Friday afternoon and returned home Sunday afternoon. It was a quick trip but honestly, it was nice not to be gone very long. It's been a wonderful, exciting summer but I am beginning to feel the effects of being on the run a lot. Baby #2 raises pokes at me from time to time and says, "Mommy slow down. Remember, you have to take care of me too!" I will mention, by the way, that my sonogram is on Monday and we hope to learn that we have a healthy baby who is developing just perfectly and whether we have a he or she growing baking in there! When I say healthy, I mean that all of the organs are the right size and look just right. We won't know until the baby is about 2 months old whether he/she has Cystinosis or not.. I was asked recently but someone in the Cystinosis community why we are not doing prenatal testing and why I would take that chance.. It's a fair question and one that I imagine other people, who know us personally and who just know us in the cyber world wonder. My answer is, because it's right for our family. Landon is an incredible blessing... He is not damaged. Many of us throughout our lives will have to take medicine for lots of different reasons. We can't predict what our health will be like or what life changing events will occur... Landon and this child are no different. Is life a little more complicated sometimes? Yep. Do I feel sad about what he goes through? At times. Do I know what the future will look like for Landon? No, I have hopes and dreams though. Do other parents know what the future holds for their children? No, but I bet they have hopes and dreams too. I know that my boy is the most special, the sweetest, the cutest, funniest, most entertaining little boy on this planet. If you're a parent, I bet you know that too (about your girl or boy). So why not bring another beautiful, wonderful child in this world? Today I took Landon to a Gymboree class... they are, by the way, wonderful classes! The instructors encourage learning and fun and using your imagination. At the end of the class, as usual, the instructor gave me a piece of paper that included the lessons that we were learned and what skills they touched on along with suggestions for activities to do at home. The instructor pointed one out specifically and told me that it's lots of fun and kids learn a lot from it. When we got home I looked at the lesson. It was very cute and encouraged using the imagination, counting, critical thinking, listening etc.. Suddenly I felt like I am missing the boat a bit. I looked at our calendar for next week... therapy 3 days a week, visit relatives, business meeting for my MOMS group, try to fit in another activity for MOMS group since we've been invisible lately, one day of Gymboree class since school starts soon and our membership will expire.. Add in grocery shopping and the other errands that pop up as the week goes on.. Whew! What about Mommy and Landon activities that involve more than shooting cars across the floor, throwing and catching ball and playing in bed under the covers? Are those things important? Absolutely. But what happened to my imagination? I have wonderful activities at my finger tips thanks to the classes we've attended, child development websites and Pinterest. They are in a virtual folder in Pinterest labeled "Kid Stuff." I have yet to try one of them. Now I know some of you reading this will respond by saying, "you have so much going on. You're doing a great job!" It just makes me re-evaluate things. Would Landon learn a lot of the skills that we are working on in therapy through these kinds of activities? Would making the time to do activities be just as, or more, advantageous then weekly therapy? I never want to look back on the time that we spent when he is this age and have regret. I want to set him up for success.. Decisions, decisions...

Mr. Independent

We have looked forward to our boy getting older, bigger, learning new things... People say not to rush the times because their childhood goes so fast. I have never wanted to rush time but Landon accomplishing new skills and getting bigger means, to us, that he is thriving and his body is healthier... Our little guy running around full of energy means not just that he is being a toddler, but that his electrolytes are within a normal range and that the Cystagon is doing its job. We feel so blessed to watch Landon grow, change and learn right before our eyes. He is becoming more independent... Oh yes, independent. I didn't expect, at the age of two, that he would want to do his own meds and feed. It started by insisting on shaking the formula in the bottle before I poured it in the bag.. Then he liked to help me press down on the syringe to release medicine in the tube.. Now he wants to disconnect and connect the tube from his Mic Key button. He releases the opening on the side where medicine gets distributed. He sits with a syringe and carefully places it in the opening. You can see why we avoid giving him the plastic syringe in his bed whe. We can't supervise, even when he insists, because his attempts have been successful leading to wet sheets and jammies at night. Is it sad that he is so used to all of this? I used to think so but not so much now... I want Landon to learn to manage his disease and what comes along with it as he gets older. And this is a great start. It makes life a bit more interesting for Jimmy and I!

The results are in...

I could just shout from the roof top, I am so excited! Today, we took Landon to have an X-ray done. You may or may not know that he was diagnosed with Rickets when the diagnosis of Cystinosis came. His phosphorus levels were extremely low and phosphorus is what promotes bone health so his bones weren't in great shape... At his last nephrology appointment, they said that we should have the X-ray done to check to see how his bones look now that he has been treated for over a year. Dr. Nyguyen called this afternoon (yes, only hours after we got the X-ray)and said that the difference between the two X-rays were like night and day!! His bones look wonderful!! We spent time talking about some other med changes, additions etc.. At this point, he is doing well, so a lot of what we spoke about today was to be proactive. For example, we discussed increasing the dose of Cystagon that Landon is taking to see how much of a dose he can tolerate. This came from some case studies that Dr. Nguyen read about patients in Europe who take as much Cystagon as they can tolerate (rather than basing it on body weight alone)and there have been reports of WBC levels at .4-.5. Our goal is to keep the level below 1 so to get it to half of that would be incredible! Since Landon really seems to tolerate his meds well, I feel comfortable to experiment a bit to see how much his little belly can tolerate. I also asked her about this little peanut that is growing inside of me now. I may or may not have mentioned that we chose not to move forward with prenatal testing. We will find out after this little one is born if he/she has Cystinosis (by the way, we hope to find out at the end of this month what the sex is, yippee!!). I inquired about the protocol for testing this baby (when will it occur, how)... The baby will be tested the same way Landon was between 2 and 4 weeks of age. They will take blood and send it to the only lab in the US that reads these tests which is located in California. The results generally take a couple of weeks to come back (although we got Landon's back in 10 days as a result of very persistent doctors). They will also perform a genetic test, as they did with Landon, to determine the mutation. The genetic test isn't absolutely necessary and many with Cystinosis have never had this done, but I would like to do it if we have the opportunity. If this peanut has Cystinosis, he/she will not need a feeding tube right away and will not have to be put on Cystagon and supplements right away. It really just depends on electrolyte and cystine levels. The plus for this kiddo is that we will know at a VERY early age so we can begin treatment right away and hopefully not have to worry about Rickets and bone health in the same way that we did with Landon. Only time will tell..

Summer Fun!

I have been meaning to post but it keeps slipping my mind. We spent the week, last week, at the beach in Ocean City, MD. Landon did incredibly well being away from home and a bit off of his routine. There is no doubt that he thrives on it but it's nice to know that he is still his sweet, silly self when we don't totally stick with it. He woke up each morning to a condo full of people he loved who were ready to give him their full attention. What else could a little boy ask for? He slept well at night and napped well so my anxiety about that was put to rest... He did better at the beach and with the water and sand than I expected and even went into the swimming pool. I have to say that he was most comfortable with grandma in the water. Jimmy and I were so pleased and so proud of our big boy. We have one more vacation to look forward to. Landon is going to attend his first concert this month, the Wiggles, and we are going to go to Hershey Park. It has been a great summe and our boy is getting bigger and doing and saying more all the time! He now weighs 22lbs! And the best thing is that he is beginning to eat and swallow so much better. I mentioned before that he put lots of food in his mouth a d would chew it but then spit it out. Jimmy and I have decided to no longer accept him spitting food out. It's just not an option. We remind him to take small bites, to chew and to swallow.. We offer him a drink in between bites and he had had much more success in swallowing! Now, we only started doing this when we noticed him swallowing more food on his own but we have set expectations now and it seems to have helped. The feeding tube is still necessary and we don't plan on weaning him from it anytime soon but this is huge progress! He takes in about 1200 calories from formula each day which promotes growth and the extra calories from food is a big bonus. At this rate he should average about a pound a month in weight gain. He was sick a few times this summer which knocked him back a bit but he has done really rally well overall. At the end of this month, he has an appointment at the Childrens Institute with a feeding team. It is a local rehabilitation facility for children. He has made lots of progress but I think their input and feedback will be helpful. So you see, lots of good and fun things going on. My sister sent me a video of Landon when he was just beginning to walk which was about 9 months ago and it melted my heart and made me so proud. He . He had grown and developed so much in that period of time. I could not be more proud. I just love being his mom and watching him grow. I wi try to post some pictures later! Thats all for now!

Smarty Pants

Landon has a new "trick..." Jimmy reported it to me when I returned home from a 10 minute trip to Rite Aid and it happened again today. Landon asked me to eat but his Occuoational Therapist would be there in a few minutes so I told him to wait a minute. Minutes later and walks in the living room with a bag of salad in one hand and Ranch dressing in the other. Yes, he can open the refrigerator door by himself. Life just became a bit more complicated... Sometimes it hits me that I don't give my boy as much credit as I should although generally that really works in his favor. We have had an issue with the piece on his feeding tube which we unplug to give meds, becoming unplugged and leaking on his bed. I have changed the sheets countless times over the past 2 weeks. Tonight, I decided to put a piece of table over the opening in hopes to avoid another mess. Please note that I have not blamed Landon. We read stories, I hooked him up to his feed, gave meds and put on my trusty piece if tape. A certain little boy did not like the tape idea and loudly protested. Guilty maybe? He is such a sweet boy with a great disposition. He is silly and so much fun but he is becoming quite a little handful at times. And, I admit that I wouldn't have it any other way... Well, maybe sometimes . :0)

Busy Days

Busy, busy here in the Hartz household and all wonderful things! We took our first vacation last week to Cedar Point. It went better than expected in that Landon napped, slept and traveled well! We have such a great routine at home and mama is particularly persistent about keeping with that routine. Daddy is a little more willing to be flexible which worked out great for vacation. Our little guy particularly enjoyed the new animated dinosaur tour that we experienced. Rides? Not so much! Landon doesn't appreciate not being able to sit on our lap and he seems to know when it is not an option so was very unhappy. I love to ride and have visions of riding roller coasters with my boy as he gets older so I was admittedly a little bummed. But he is only two so I still have time to "encourage," right? This trip made me extra excited about our upcoming trips to the beach and to Hershey Park! Yesterday was our first annual Lots of Landon Golf Event. It was a great success and we are so grateful to our brother-in-law and his good friend who planned it. Jimmy and I learned so much!! There were 65 golfers there despite the record breaking 99 degree weather!! Everyone seemed to have a blast ands we were overwhelmed by the generosity of so many who have never met us or Landon along with our family and friends. There is already talk of next year's golf event!! I will post more about it with a link to pictures soon!! As you know, last month was the first anniversary of Landon's diagnosis. We have experienced lots of firsts over the past year. Around this time last year, we went to Jimmy's cousin's daughter's birthday party. We surprised everyone by going because Landon had just been discharged from his month long hospital stay. With some anxiety, we packed his meds and feeding tube and ventured out on our first outing with a little guy whose special needs we were still getting used to. We realized that day that nothing would stop us from experiencing life and that this would all become normal for us. And, it has! We are a good team- Jimmy and I have always said that. And we are surrounded by incredible people!! We are so blessed... Landon is so blessed... And this little peanut that will join us in January will be just as blessed...