My Smart Cookie

Landon comes home from school and I always ask "how was your day? what did you play? what did you learn?" He often mentions who he played with and if something significant happened but I usually get an "I don't know" when I ask about what he learned. So imagine my surprise a few days ago when he excitedly told me that he learned about planets. He talked specifically about Mars and told me that some planets are hot and some are cold. I told him that it's true and that some planets are closer to the sun than others and that they rotate around the sun. His response was, "no Mommy they don't." Hmm.. okay. He has mentioned planets several times since then and I smiled today when I looked at the bulletin board to see his name on the colored circle "Mercury" which is the planet that he must have said that he wanted to visit and he wanted to go there because it's hot. He then brought up the planets again at bedtime so we called Daddy into the room and the three of us talked about what we know about planets (which is minimal). I love learning about what he's into. He's such a big boy now.

Hali what?

Oh goodness, I haven't updated this blog in so long! If for no other reason, I need to do this because baby books don't exist at my house. I am not doing a very good job at documenting my boys' childhood milestones and journey. Landon is taking the day off school because he has a cold and things are coming out of his nose and mouth so we'll do his friends a favor and keep him home. School is going well for Landon and he enjoys it so much! I recently had a conference with his teacher who said that he is a sweet, great little boy and is a joy to have in class. She recommended that we give him an extra year of preschool and not send him to kindergarten in the fall. Jimmy and I have debated about this a lot of the past few months and I think we have come the decision that we agree with his teacher and will hold him back. I am not entirely disappointed because the thought of putting him on the bus and sending him away for the day just doesn't feel right yet. Maybe it will never feel right but it will happen in the fall of 2016, not this year. So I have a kind of embarrassing story... on my part, not Landon's. I have started attending a Universalist Unitarian Church which I will tell you has been a wonderful experience for me. The boys go with me and go to the nursery and play with friends. I went to pick them up on Sunday and the caregiver told me that Landon had halitosis. I gave her a blank stare as I tried to remember what halitosis is. She asked if we had experienced it before with him and I said, "no.." rather than be vulnerable and say, "um, I totally forget what halitosis is." I took the boys upstairs and they gobbled on some fruit and I quickly googled the mystery word. "Bad breath"- crap! That's what it is! If it didn't require dragging two little boys back downstairs to the nursery, I was going to go down and confess and talk to her about his halitosis. So now I'm prepared to fess up on Sunday... =) The medicine that Landon takes to keep his cystine level down causes a small about an hour after he takes it. To me, it smells like spoiled milk. Now keep in mind that Landon gets his toddler formula as a supplement and has since he was diagnosed. I used to smell that smell and once said to Jimmy, "he smells like sour milk." Jimmy responded, "Laur, that's his medicine." It made me a bit sad to think about but I have been meaning to ask his teachers if it's something they have noticed. I sometimes wonder if we are more sensitive to things because we know that they exist. But now that's confirmed, thanks to an honest woman who care for my son each week for one hour. I'm grateful for her. There are some methods that we will begin to try to help this smell.

Our Healthy Boy

Today we had our visit with the Nephrology department at Children's Hospital. We were at the hospital just a few days ago for blood work. For Landon, at this point, blood work is the worst part of Cystinosis. He hates it. I'm always honest with him about where we are going. I don't jump to tell him but when he asks where we are going, I tell him. I will always be honest with him and I say I and not we, in referring to Jimmy, because I can only speak for myself and I'm the primary person who handles doctor and hospital visits since I'm home with the boys. Half of the 30 minute car ride to the hospital was filled with tears. Landon and I talk a lot about feelings and how to cope- his mom is a therapist. We talk openly about being afraid and that it's okay to feel that way and we talk about what exactly happens when you get blood work done (or shots). I told him that I don't like to look when they put the needle in my arm and that's what he tried this time. A big part of me wants to do whatever I can to make it easier for him but then there is a part of me that just wants to accept that it's a sucky part of Cystinosis (or life) and allow him to sit with those feelings. We don't always have to fix it and make it better. Sometimes it just is... He asked me to tell the phlebotomist (he calls all medical people doctors) to please be very gentle with him. I assured him I would but he walked in when they called his name and told the two ladies in there himself. The phlebotomist promised and she certainly did her best. He cried, I gave him lots of hugs and told him that he was very brave. The secretary asked him, as we left, if she was gentle. Landon responded "yes, she was gentle. It just hurt a little bit." When I told Landon that we were going to the hospital to see the doctor today, he quickly asked if he needed a shot. I promised him that he would not need a shot. One time I promised this and we were told at the appointment that we could get our blood work done after the appointment. We went back another day because I just could not break a promise if I could help it. Anyway, Landon confidently walked past the lab and announced to two employees standing in front of the door, "I don't need a shot today." I also have to tell you that he had a hat shaped like a monkey that he wore. He told me in the car that he would wear his hat in the hospital because "it will make people laugh and they will be happy." We are so blessed with such a special kid. That comment represents who Landon is so well. So the appointment.. I have to say that I actually really enjoy going to Landon's nephrology appointments. We just adore his nephrologist. She was introduced to us from the very day we entered the hospital and Landon was diagnosed 3 1/2 years ago. She was one of the doctors who entered the room and confirmed his diagnosis and the one who called me to tell me that Jordan does not have it. She is currently on maternity leave so we saw Dr. Moritz who knows Cystinosis well and has treated patients for many years. He is a great guy and I always enjoy meeting with him. They provided me with a copy of Landon's lab results and Dr. Moritz went line by line discussing each number. With the exception of Landon's thyroid number (which was a bit high) everything fell in the normal range (normal for any 4 year old). This has been the trend for the last couple of years which is something that makes us incredibly happy. As I spoke longer with Dr. Moritz, I realized how well Landon really is doing. The expectation is that as Landon gets taller and gains weight, his medicine will need adjusted, right? Makes sense. There are three drugs that he takes to replace what he loses in his urine (potassim, phosphorus etc). He takes two drugs to help with belly issues (the meds are tough on his stomach). Cystagon which keeps his cystine level at a safe level to slow down the destruction of his body's cells. He takes a drug for hypothyroidism and one to promote bone health. The topic of discussion this afternoon was the drugs that replace what he loses in his urine. His electrolytes were all within a normal range which is great but this nephrology team is always thinking ahead and taking the extra step so we are cutting back on two out of the three drugs that replace his electrolytes and are getting rid of one altogether. This is great news because, as Dr. Mortiz stated, it means that he is improving. He doesn't require the extent of medical intervention that he once did. We struggled for a long time to get Landon's phosphorus level in the 4's; today it was 5.7. The doctor examined him- no sign of Rickets in his ribs and when Dr. Mortiz straightened his arms out he was surprised to see them actually bend all the way to the opposite direction and that he is really flexible. We plan to have a couple of tests done, an ultrasound and bone density test, to confirm his bone health and that his bladder is healthy. All in all, it was a wonderful appointment and a reminder of how blessed we are that our boy is doing so well.

Fall Fun!

I was recently talking with a friend about coping in difficult times. I told her that I have always viewed blogging as therapy for me. It started because we were in the hospital with Landon and wanted to share the latest news and information and didn't have the time, nor the energy, to provide information over and over again. But then, it became my voice. There were really tough days and blogging helped me to stay positive and optimistic because I wanted to reassure all of you that it will be okay and that we were okay even if it wasn't totally true in that moment. I told my friend that when I post often, it's probably because I am going through something emotionally and it's my opportunity to get some of my thoughts out in the open. So, I say all this to say that things are going so well... The boys are keeping Jimmy and I very busy. Our weekends have been busy with fun events- weddings, birthday parties, meet ups with friends and yesterday was a trip to our first fall festival of the year. Landon picked out a pumpkin as Jordan consistently ran the opposite direction of where ever we were going. The climbed up into an old fire truck, went down a slide with their dad in a burlap sack, rode on a hay ride, ate apples, went into a butterfly tent and a butterfly sat on Landon's finger- Jordan doesn't quite understand the meaning of gentle hands yet so he just watched. They saw and talked to sheep, a pig, chickens, ducks and goats and then cried for half of the trip home out of exhaustion and sadness that it was over. Several times during this trip, I thought to myself how awesome it is to have these two little boys and how much I love being with them. Landon went back to school, 4 days a week this year, and loves it. He has a new teacher and has met some new friends in his class. He told me that one boy in particular has nice hair and that it's down which was his way to tell me to stop putting gel and making his hair into a faux hawk. He humors me sometimes but for the most part he tells me to leave his hair alone. =( Jordan and I are getting more one on one time together now which is nice. But he really loves when we go pick his big brother up from school. They are such good buddies although they fight and agitate each other as much as they play. Jordan likes to pull on the back of Landon's shirt to pull him down and Landon often yells "Mommy, Jordan isn't sharing with me!," when Jordan is trying to play with Landon and whatever he is playing with. They make each other laugh and are becoming such great play buddies though and it warms my heart. So one additional thing that is keeping us pretty busy these days is the 4th Annual Lots of Love for Landon Halloween Party!! It is scheduled for November 1st and we are so excited!!! If you want to join us or want to make a general donation to the Cystinosis Research Foundation in honor of Landon and this event. Go to the link below. This one is to pay for your ticket using a credit card or to make a general donation with a credit card. https://www.cystinosisresearch.org/4th-annual-lots-love-landon-halloween-event/ This is for the Evite to rsvp for the event. http://www.evite.com/event/02D2DNAECW5FTUEUGEPEGK3JF4O6J4?gid=02D2DNAECW5FTUADEEPEGK3JF5Z63Y Contact me for any additional questions... Oh, and we have a Chinese Auction and door prizes as part of our event. If you are interested in donating a basket, prize or gift card we are so thankful!!! LaurenLHartz@gmail.com

Being Nice to Myself

"You put too much on your plate." "No wonder you forgot. You have so much going on?" These are phrases I hear from the people that love me when I make a mistake and then beat myself up about it. "You don't play with the boys enough. You need to set aside time for structured play and for free play with them." "Take them to play groups. It's great for socialization." "The laundry piled up. You need to do some every day." "The floors need cleaned and you need to get the pile cleared off the microwave." "Get your notes done early next week so you're not dropping them off late Thursday night!" "Keep track of your list better so you don't spend so much time at the grocery store." "Exercise!" "Why did you eat two banana muffins? Just eat one, or none!" "Go grocery shopping. Make that doctor appointment today, not tomorrow!" "It's dinner time and you only gave Landon eye drops twice." "You waited too long to call reorder Landon's prescription. You need to keep better track of that." "Put aside money for the boys preschool tuition." "Fax that, today!" "Buy those birthday presents. And, why didn't you send out thank you cards for the boys birthdays? People will think you are unappreciative!" "Don't yell at Landon when he isn't listening. See, why did you yell? You need to stay calm." "You need to watch Jordan carefully. He is going to get hurt because you weren't paying enough attention." "You gained back weight since vacation. You were doing so well then. Get yourself together!" If I talk to someone else like I talk to myself, they probably wouldn't want to be around me very much. This weekend I loaded the trunk of my car with items to take to my cousin's bridal shower. My sister closed the trunk and my purse happened to be in it. The car locked and I stood in panic because my only set of keys were in my purse, in the trunk. I turned on my "auto switch" so I wouldn't yell or cry out of frustration. Jimmy went to investigate and to try to solve my dilemma as I did deep breathing and zipped around the house fixing the boys lunch and telling myself to calm down. He called for me 10 minutes later and stood looking at me with my keys in his hands. I left the keys on the wall as I was loading the car. I sobbed. "I feel like such an idiot. Why do I do these things? How stupid." Of course, my eternal voices (which happened to be my husband and my sister at that moment), disagreed and assured me that it was a busy morning and that its an easy mistake. I was not quite so forgiving, but was able to calm down. I'm aware of my shortcomings. I acknowledge that... I'm working on treating myself better. I am. I always tell Landon that he needs to use kind words- that words hurt. I guess that's true even when speaking to yourself.

Dear Me..

Dear Me Three Years Ago, Yes, you're devastated. You were told that your baby is not okay- he is sick. You have a demanding med schedule that is crucial to get him healthy. How am I ever going to manage all this you are wondering. Well guess what, you will. Every day won't be perfect. You will wake up at 5:00am every so often and realize that you didn't do his 2:00am meds. It's okay. The next night will be better. His phosphorus level is stubborn. It just won't get into the 4's- but it will. You are grieving over Landon's diagnosis and the fact that you won't have another baby, Landon won't have a brother or sister. Guess what- he will. Cystinosis won't scare you for very long. You can't believe that his doctors are consulting with you about what the next step should be. You don't know what Cystinosis is and certainly can't make decisions about how to treat it in your child. But yes, yes you can. You will learn what questions to ask. You will find supports in the Cystinosis community. Cystinosis will bless you in a lot of ways. Oh yeah- and it's okay for you to grieve, to get angry, to feel sad. You will do that over and over and over again- sometimes all in one day. You will tense up when the parent of a "healthy child" complains that their child won't eat, has a cold... They just don't get it. It's okay to feel that way, but you'll get over it. You are forever changed by the way, not for the bad, don't worry. You emotions are exaggerated and that won't really go away. You will get so excited that you can hardly contain yourself and when you feel sad or nervous, you will have to use those relaxation techniques that you learned about in grad school to calm down. And you know what, Cystinosis will not occupy your mind constantly. I promise it won't. He will be okay. The doctor was right in saying that he will be a normal kid with some bumps along the way. You vow to kick Cystinosis' butt. You will and so will Landon. Dear Me Two Years Ago, The doctors got Landon's meds figured out and he is getting healthier. You're still overwhelmed. His emotional health is so important too, and your baby is so anxious, so nervous, so timid. He is walking now! Yay! I know that he's really not eating yet, but keep at it. I know that all you want is to sit at the table or in a restaurant and to have him actually eat. He will. You have to be patient. You do a great job in managing his med schedule. Just accept the compliment when his doctors tell you that. You are doing a great job in making his life as normal as possible and you haven't let Cystinosis stand in the way of anything. Putting him in school was a good idea. When he goes to school by himself in the fall, it will be hard. He will not want you to leave. People will tell you just to go and that he will be okay. You will follow their advice after several weeks and will walk out leaving him to scream for you. The teachers will come to get you because he threw up. As you sit in the hallway, holding him with your head learning against his, you will cry. You will think of the years to come when you will sit at an IEP meeting educating the teachers and staff about Landon's disease and what special needs he has. You will think about explaining to the other children and parents what is different about him. Then you will pull yourself together and will follow your instincts. You will follow Landon's lead and one day he will say bye to you and will walk in the classroom by himself. You will be thrilled and it won't make you sad at all to see him separate from you. Oh and guess what- you are having another baby. Landon is going to be a big brother. Take that Cystinosis! Dear Me One Year Ago, He's come a long way. He's eating better, eating well actually! He is still very cautious and there are a lot of things that he just refuses to do. It makes you sad to see him afraid to go down a slide and to do other things that his peers do without a problem. Your trying not to blame everything on Cystinosis but man is it hard sometimes! He doesn't cry anymore when you go to the doctor and they try to get his height and weight. He actually cooperates happily. He's not so scared of people anymore. A substitute therapist came out to get him from the waiting room and he went back with her with no hesitation. He keeps growing consistently and is just about on the growth chart now! His health is great and the doctors credit you for that. You credit the doctors, genetics and research- that's all true, but please just accept the compliment. It will keep getting better. He will amaze you... Your life is beginning to feel normal. You are starting to trust that other people can care for Landon too. You may not believe this, but you will go back to work soon. It will be very part time but it will be perfect for you. You really won't believe this but you will go away for a weekend with Jimmy leaving the boys behind. You will depend on someone else to give meds and eye drops and Maw Maw will do just fine. Can you believe that he will be playing tball next year? Oh, and he will go to the park and will go right down the slide and will jump on that thing that spins and scream for you to push it faster and faster. Yep, he will. He won't need therapy anymore this time next year. He will start going once a month just for maintenance. You will think more about how to handle him refusing to clean up his toys and whether you should let him play bad guys and with swords than you will Cystinosis. Seriously. You will stop worrying about whether or not Landon can keep up with his friends next year because you will struggle to keep up with him. Oh and that anxiety and social stuff, don't worry about it. He'll still be cautious which you will appreciate but he will start making friends easily and will have a lot more confidence. Yours truly, Me today

Cystinosis, what?

Happy Summer Friends! These past couple of months have been pretty eventful! We went from celebrating a special little boy's 4th birthday to our first cruise to our 3rd Annual Lots of Love for Landon Golf Outing! There were close to 100 golfers at the event that was organized by two of my awesome brother in laws, Jason and Jason, along with our great friend Brad. These guys worked super hard to make it a success and that it was... The event raised over $17,000! Woohoo!!! Each year the events get better and better because we learn so much each time- I also speak of the Halloween party that we have in November. It felt well organized and we have more volunteers each year. Landon and Jordan were present the whole day thanks to the watchful eyes of their grandparents. Landon is becoming much more comfortable in front of people and around people so can be quite a little ham now. Landon had an appointment with his nephrologist a couple of weeks ago. His electrolytes looked great and were within a normal, healthy range. He is growing beautifully and she had nothing but good things to say. I learned today that his cystine level was .85 which is good because we want this number to stay under 1, but it has been .4 so for me, it didn't feel as good. A cool thing, I may have mentioned this, is that we have not increased any of his supplements or stomach medications in a very long time which is great because he is growing and it would make sense to have to increase the dose but we have not had to which indicates his good health. Cystagon will have to be increased as he grows so an increase does not mean anything bad for his health. I was told that Landon is on the higher end of the recommendation for his dose which is perfectly okay with me. I have been told by some parents with older kids that we should put Landon on the highest dose of Cystagon that he can tolerate and fortunately, Landon has not had any trouble tolerating the higher dose for his weight. If we increase, the new dose will be just slightly above what the recommendation is so Landon's doctor gave me the option of keeping him at his current dose or increasing and seeing how it goes. Her concern is not about side effects but how well he will tolerate it. I decided to give the higher dose a try but not to push it too much. So, we'll see how it goes. I learned from a friend that .4 is the level that someone who is a carrier of Cystinosis would have (Jimmy and I), so to have his level there makes me feel pretty happy. Hopefully we can get it back there. I have to tell you that my thoughts and challenges lately are more about the usual challenges of being a parent and worries that come along with that than Cystinosis. Lately, the challenging areas of life involve weaning Jordan from that darn bottle before nap and bed time and keeping him out of the refrigerator, garbage can and toilet; and handling the battles of cleaning up, using kind words and listening with Landon. I am grateful for this, although I may have to be reminded how good life is when I'm battling with children about taking naps and not destroying a room the moment I walk into another. I think we are in a transition from being parents of babies to being parents of little boys, of kids. It seems to a whole new territory, but I have to say that there are a whole lots of laughs and messages to Jimmy while he is at work that say, "Days like today make me happy to head off to work this evening," and "Dear God, make me a bird so I can fly far... far, far from here.." (Forest Gump if you didn't know). They are super cute though! Jordan is imitating a lot of words (thank you is my favorite) and loves to sing! I have the cutest video of him singing along with me to Old McDonald Had a Farm. He is officially a walker now and looks look a little old man running those chunky lil' legs around the house. He is just as kissable and lovey as they come! Landon is such a cool, little guy to be around! We have great conversation and I'm so impressed by what he remembers and how he interprets things. My explanations to questions now aren't as simple and brief as they used to be and he understands what I'm talking about. He is getting to be so big but still likes to be held and cuddled. The other day he told me that he has a secret for me and then whispers "I love you." He followed that by telling me that he misses me when I go to work. I wanted to tell him that mommy will never go to work again! I love watching him with his friends. Today he asked me who my friends are and I found myself identifying my friends by who their child is... Both boys notice and remember things just like Jimmy does which worries me because I realize that I probably don't stand a chance against them individually and certainly not as a whole. The dynamics in our family are starting to settle in and I'm learning that they are all either loving me like crazy or are teaming up to torment me. Either way, mommy gets a lot of attention in our household. I am truly a luck lady... =)