Just a mom, not a stalker...

It's been a while since I updated this blog and as I have said before, no news is good news. We had a fun and busy summer. I started my own private practice so have been figuring that out in lots of ways. Our big news is that Landon has started kindergarten. He is doing great so far and seems to enjoy being there. He is definitely happy to see us when he gets home but really does seem happy. Today was the first full day. His nurse invited me to come at lunch time, when he is due for his medicine, to give it to him while she observes. Quite frankly, she has worked in the ER and OR at Children's Hospital and she had instructions for how we do it so I am quite certain she invited me to come for my sake and not so much for hers! I can't tell you how eager I have been all morning to get to that school to see him. I dropped Jordan off with his grammy an hour before I had to be there and drove 10 minutes to school not forgetting to stop to grab a cup of coffee because we ran out and today is not a good day to not have coffee for this mommy. Oh, and side note, Jordan now calls me "Mummy" and it is the cutest thing I have ever heard. Anyway, I pull up in the parking lot and think to myself, "boy, I wish that they were playing at the playground" which can be viewed from the parking lot. Bummer! And then within a few moments, I see little people parade outside toward the playground from the school. *cue the angelic choir* I can't see them so I very casually drive down the driveway, not like a stalker, and I see my boy's "best friend" whose name he can never recall. Landon expressed a bit of worry last night about not being able to find his BFF and we talked about the possibility that he might not and what he can do if he doesn't. I looked behind the BFF to see Landon, marching with his backpack on and hanging on to his lunch box. Aghh!!!!! My boy!!!!! Then I hoped that they would find each other because of course Landon could never locate and connect his BFF without mom near him (despite the fact that they met and connected without me having anything at all to do with it). I made a circle and continued back up to the parking lot, choosing a spot that would allow me a view of my sweet boy playing. I watched. I texted BFFs mom to give her the news. And I cried. And cried. I was so grateful, and I missed him so much. I then left my spot to move closer to the school because I had a lot to carry and I didn't want him to see me prematurely. I sat patiently, making small talk with the school nurse (who is just perfect for the role she is in) and then I heard his voice. I walk out to see him looking a little worried. I squeezed him tight as he told me that he doesn't know where his lunch box and back pack are. The playground monitor informed me that they had dropped those items off at his locker (although I don't think he realized that and was worried that he lost them). We showed Ms. M how we put meds through his Gtube. It took a few minutes to look through a book and we squeezed again and parted ways. This is an adjustment for Landon but my sweet boy is so brave and so resilient- so much more than his mom. For the first time in my life, I feel like a piece of me is walking around separate. I am so grateful for the people who have been placed in his life during this transition because it feels like they were hand selected- from the bus driver, to his teacher, to the nurse. I feel some peace because of them and because Landon shows me all of the time that he is much stronger than I give him credit for.

Natalie's Wish Speech

I was given the honor to speak to a group of almost 500 people at the Natalie's Wish Event last weekend.. When a video is available for me to share, I will, but in the mean time I will post the words I spoke... To say that I am honored to stand here in front of you would be an understatement. My name is Lauren Hartz and my first son, Landon, was diagnosed with Cystinosis when he was 14 months old. I wish I could say that was the beginning of our journey, but it began well before that. I have memories of sitting on the kitchen floor encouraging him to take a bite of something, anything. My husband Jimmy used to call me from work to ask how we were doing and what Landon ate. He was losing weight- failure to thrive, malnourished. I felt like a failure. We had test after test to figure out what was wrong and kept getting the same answer. Our last guess as to what may be wrong was an endoscopy procedure and at that time, they collected a urine sample. Again, we learned that something else was not the problem. I was told that there is no medical reason why he wasn’t eating and that we needed to have him admitted to the Children’s Hospital in Pittsburgh for intense feeding therapy. I was told when getting instructions for admission that they were going to collect another urine sample. There was sugar found in his urine which was probably a fluke but they needed to be sure. That was the first thing they did and soon after, the nephrology team presented, like a small army, in our room. We learned a new vocabulary only several hours into being admitted… fanconi syndrome, cystinosis, transplant… It felt like a nightmare. They told us not to Google Cystinosis. Jimmy made me promise not to but my mind was thinking the worst. I did and that’s when we came across the CRFs website. Nancy quickly responded to my e-mail. Cystinosis wasn’t even yet confirmed and already we trusted her. She promised that amazing research was happening and that we were in this together. After the diagnosis was confirmed, Jimmy and I started talking about things we could do to raise money and contribute to research to find better treatment and a cure. We had to do something. We felt so helpless. Five months after he was admitted to the hospital, we held our first fundraiser, a Halloween party with our family, friends and others in our community. It was empowering and since then we have had 9 fundraisers and have raised $160,000. I don’t know that I can go so far as to call Cystinosis our blessing, but this journey certainly has been. There are moments that are so hard. It’s heartbreaking to watch Landon try his hardest to keep up with his peers when he plays sports, to see him become lethargic after too busy of a day, when someone comments on the smell that is caused by the medicine that keeps him healthy, when we see his Mic Key button causing him discomfort, having to hold him tight as he screams and cries during regular blood draws, and each time we lay him on our laps to give him eye drops. Normal illnesses that kids get put us on alert because we fear that he will get dehydrated and end up in the hospital. And let me tell you a secret, I’m traumatized from that month long hospital stay and anytime I think about going back my heart races and tears fill my eyes. But let me tell you about the blessings… The Stack family, the community of people who we have come to love so much that include people who I talk to regularly and who I consider to be my best friends, watching our family and friends work tirelessly to organize our fundraisers, the goodness and generosity that we witness all of the time, the lessons we have learned about what is important and about being grateful and present. Those are just few. Recently I had to change Landon’s Mic Key button which is so challenging. He screams and cries and begs me not to do it. Afterwards, I held my crying boy tightly whispering that I am sorry. He looked at me and asked if I know any inventors or magicians. Landon has a huge imagination so I wasn’t sure where this was going. He told me that he needs to find an inventor or a magician to help make his belly not hurt anymore. I felt tears fill my eyes and then found myself saying, “buddy, I know lots of inventors and magicians who are working hard to make sure that your belly stops hurting. They are the people that we will see in California.” To all who support Cystinosis research, I am thankful. To those who raise awareness, I am thankful. For those who dedicate their careers to finding better treatment and a cure, I am so thankful. And to all of you, who have made our cause, your cause too, I am forever thankful. Thank you.

It's that simple.

Jimmy came home from being out of town for work on Thursday and had a cold and congestion. What do many of us do when this happens? Keep going, right? So he did.. I recall a few weeks ago when I was feeling so tired and snapped at Landon. I quickly apologized and told him that I was so tired but that it's not ok to yell even if you are tired and grumpy. I observed that Landon was also tired and grumpy and asked him what we should do. He answers quickly, "take a nap." What a concept, right? Landon has caught the cold that Jimmy has.. He informed me, when he woke today, that he should not go to school because he isn't feeling great and that he misses his friends and hopes that he feels better tomorrow. He told me that he needs soup, milk and a chocolate chocolate chip cookie from the bakery up the street. It was that simple. There was no "I got to keep going.. No time for rest." I feel like he has it right. I always say that my kids teach me more than I could ever teach them. And as he finished his getting better lunch, he said "Mommy, thanks for helping me get better."

A message

The message that we received today was "slow down..." We had a busy, fun weekend and to end it, Sunday night, Landon spiked a fever and started vomiting. We have been blessed that when we, any of us, have caught a virus it has been so quick. A reminder that we just need to slow down.. Mommy needs to call off work and we need to stay in our pajamas all day. It's a message that I need to sit on the couch with a little boy cuddled in my lap and watch Handy Manny while stroking his hair and kissing the top of his warm head. Maybe it's an excuse for me to sleep through the night without a loud ring at 2am reminding me to give Landon his medicine. He is yelling for me to put his Halloween costume on right now... Maybe today is just what we need.

Him or You

There is this song by Colbie Caillat who I refer to as my soul singer, Him or You. It's about a love triangle although when I title this blog post that the You is me. If you read my last blog post you that sending Landon to kindergarten was something that was very difficult for me to think about. I posted it and thought that I felt better. I really did.. That following Wednesday I admitted something to myself after everyone in the house was asleep. I was having a very hard time. I sobbed. I woke Jimmy and we talked about it. I told him that I need to just accept that this hard for me and move forward with it. "He is going. He will be fine and I will be fine..." I think. We decided at midnight that night that it made the most sense to wait a year and that there really seem to be no cons to waiting. So that's it folks... My boy will start kindergarten next year. The school supplies were bought and so was the back pack and lunch box. We talked to Landon and he was totally ok, either way. That's my boy. He is totally okay either way. Through all of this I became even more aware of the idea, "is what I'm doing for me, or for him." Let's face facts, friends. We say that what we do is for our kids. It's all about them, right. I don't know about you but I have moments, probably more than I even realize, in which its really about me. Stop calling me at night after I put you to bed! Is that about him, or me and my precious "me time." Stop jumping around in the line at the trampoline park! Is it about them or am I aware of the little girl in front of us who stands so still and patiently waiting for her sticker to go jump on the trampoline. I am getting better- I promise I am. I fall short though, and that's totally okay because I learn a heck of a lot when I fall. Yesterday, at the trampoline place, my big boy connected at the Dodge Ball area with a few kids his age. Connecting at a dodge ball area seems a bit concerning for a parent anyway, right? Kidding. Anyway, my perception was that Landon was being, well bullied, by his new friends who he was so excited about. Landon was anything but distressed but my adult brain "knew" that there may be a bit of teasing the smaller kid going on. I intervened only to check on my boy. I actually wanted to throw the ball at the kids and knock them off the wall that they sat on watching as Landon tried to get up- but I digress. Instead I went to Landon as he lay on the trampoline as they jump around him tossing him about and asked if he needed help getting up. He accepted my help and I bent down to ask him if he felt like everyone was playing nice. He said yes and that he was having fun just as one of the girls jumped at me saying "he said he is going to get us." I calmly told her that it didn't look to me that he was getting anyone but that the three kids seemed to all be getting him at the same time. I stated some of the things I saw and told her that Landon seemed to be okay with it but that it really hurt my heart. She confidently said, "are you his mom?" And I told her that I was, at which point she walked away. Later in the car, I asked Landon if it was okay that I talked to his new friend like I did or would he prefer that I not say anything. He said, "You don't have to say anything Mommy. I'm just having fun." I realized at that moment that it really was about me. I excused it by telling myself, and a few close confidants, that it worried me to think that he could be a kid that finds his place by allowing himself to be a target. But I once heard that stress occurs when we think too much about the past or too much into the future and that's what I was doing- thinking about what his future relationships may look like. The message I gave him was that I don't trust that he knows when something doesn't feel right because of my perception of what was going on in that moment. It didn't matter that he was enjoying himself and happily playing with his new buddies. So that's that... In that moment, it was about me. So I get up, dust myself off and will try again.

I worry, I do.

To Landon's Kindergarten Teacher, I am the mom of just one of the children who will sit in your classroom in just a few weeks. I want to tell you just a little bit about him and why sending him to kindergarten is so hard for me, his mom, although I know that it's hard for every parent. I know it's normal for tears to fill my eyes when I think about putting him on the bus and sending him to a school in which I cannot just peek in the window and grin as I watch him in circle time without him knowing. Landon has such a beautiful spirit. His mere presence lights up a room- well in my eyes it does. He takes on various roles and his day is focused on filling that job. Today, and for the past week, he has been "a police" and that we are "polices" (his dad reminds him that it is better understood when he said police man. I hope that you are able to get to know him well because he is pretty special. He wakes up each morning and yells "Mommy-- good moooorrrnnniiinngg!" I'm going to miss this because I'm pretty certain that I'm going to have to wake him up each morning. And, he calls for me over and over at night to delay bedtime. He does this only to me. Sometimes it's because bugs are on his pillow and he needs me to flip the pillow for him, or because he needs me to give him his teddy bear despite it being only an arm's reach away. He tells me he loves me and that he needs another hug and a kiss. He tells me it's because he has to go potty even though he went right before he went to bed. Cystinosis blesses him with the ability to squeeze some more pee out at any time. You may notice that his eyes get really big and he smirks a bit when he is embarrassed by the attention that he ironically was trying to get in the first place. He forgets some of his letters and begged me one day not to make him write "M" again. "I don't like M's Mommy, let's do something else," but he remembered that his aunt and uncle brought pumpkins to our house the first day that he napped in his big boy bed and that his aunt was so surprised to see him standing at the door. He was 2 1/2 then. I also want you to know that the fact that I actually can consider letting him buy lunch at school and that there are plenty of options of foods that I can pack for him is such a blessing. At one time, he depended solely on a feeding tube for nutrition and that his preschool teacher used to put a napkin in front of him to spit out the food that he put in his mouth. You may also be surprised to know that his first experience with school was traumatic for him and me. I remember clearly sitting on a kid sized chair in the hallway outside of his preschool class crying because he cried so hard that he threw up. I had to explain that he gets a feed right before school and that he only threw up because he was upset and not because he was sick. I knew it would be the first of times that I would have to explain how and why his needs are a bit different at times. I have to admit that I'm having a hard time because I'm so used to him being with me. I know. That's not unusual. But, to accept that I will not be the person giving him his 2pm meds through his G tube is something that I'm going to have to get used to. His dad and I have trusted less people than you have fingers to watch Landon and to give him his medicine throughout his life. I totally trust that you and the nurse will do a great job. There really isn't a doubt in my mind. But it's not going to be me and that is, well, something for me to adjust to. I worry about the bus... What if he drinks all of his water and needs more? What if he doesn't go to the bathroom before he leaves and has to go badly on the bus, a bus that will take 40 minutes to get to me. What if he has an accident because he can't hold it anymore. Oh, and his medicine has an odor that is noticeable at certain times of day. He told me recently that a friend asked him, "why do you smell all of the time?" We talked about it. I told him that it means his medicine is working and that if another friend says that, he can tell them. I worry.. I wish I didn't, but I do. So please know that I absolutely and totally trust that you will take great care of my boy. I will adjust and I know that he is going to thrive. But I worry. I do. With the warmest respect and regards, Landon's Mom

CRF Conference 2015

"Great things are brought about and burdens are lightened through the efforts of many hands anxiously engaged in a good cause." - Elder M. Russell Ballard Jimmy, Landon, Jordan and I packed our bags and ventured off to California last week. It was a 4 1/2 hour flight and a 3 hour time difference and every second of it was worth any stress that the flight and time difference caused. The boys did awesome although there were a handful of moments that Jimmy and I just looked at each other as we took deep breaths. Two tired little boys can be challenging but 85% of the time they did so well! We were there from Wednesday until Sunday and the conference events were held from Thursday evening until Saturday evening. Thursday evening there was a Mexican dinner on the beautiful patio of the hotel in which we stayed. Forty families were present at this conference and a whole lots of adorable children of varying ages. One mom described her son, on several occasions, as the cute blond boy. The irony of that is that there were a whole lot of cute blond kids there along with a couple of redheads (people with Cystinosis often present with blond or red hair and a fair complexion). So imagine, a herd of very cute mostly blond kids running back and forth along a patio as fast as they can. It was quite a sight and I was beyond excited to see some the other moms who I talk to on the phone, text and private message on Facebook. Friday began with one of my favorite parts of the conference but an absolutely emotional part of it. Families are asked to take turns standing in front of the group to introduce themselves and to present a paper dove cut out with words written to answer the questions of what is your hope/prayer or for what are you thankful. To summarize what Jimmy and I presented was that we are thankful for the Cystinosis community- for the love, the support and the friendship, and we said that our prayer is that Landon will never see his disease as making him less than or that something is wrong with him. We pray that he will accept and maybe even embrace Cystinosis in all of the lessons and silver linings that it provides. Such important information was provided this day and I don't feel comfortable enough to summarize much of it in this public forum simply because I cannot do it justice. What I will say is that we learned that the nanowafer that has been developed as an improved alternative to the eye drops may be ready to recruit for human subjects by December 2015. The study to find a cure could begin recruiting the first human subjects in about 8 months depending on approval from the FDA and the IRB (Institutional Review Board which is a group that reviews and approves research studies). Only a couple of people will be recruited at first and the criteria will be that the individual must be 18 years or older or could be younger and unable to tolerate one of the available drug therapies. There will be 3 phases of the study and phase 1 will take about 3 years to complete. My hope is that there will be a cure before Landon needs a transplant, but regardless of that, Cystinosis is just a part of Landon and whether the day comes that he needs a transplant or not, it will be okay. He is just right how he is made. And if he has the outlook that so many of the adults that were present at the conference have then he will believe just that. Friday ended with a gourmet cookout and a bunch of those cute little kids covered with sand and soaked with water. They had a BLAST! I wonder if any of them really ate any dinner at all. I sat by myself at one point and just watched my boys with such amazement that they are mine and that we were able to have this experience together. Saturday discussions involved information about muscle health and neurological concerns. There was an adult panel which was so memorable. They included a very special, selfless group of people who are so resilient and so happy and living life to the fullest. My heart was overwhelmingly touched by this group of people. One woman says that she volunteers and acts as a pin cushion so that they can learn more for our children. There was a fundraising panel that I was asked to be a part of. We discussed our experience with fundraising. Jimmy and I got lots of ideas and look forward to implementing them at our fundraisers to come. Saturday evening ended with the Natalie's Wish Fundraiser which is in its 13th year. I cannot even describe how wonderful this event is. It is so cool to watch the live auction take place and the generosity of people is overwhelming. $2.3 million was raised in one evening. Incredible, right?! We are just so thankful for what people are doing to better treatment and to find a cure for Cystinosis. We are so blessed- so, so blessed!

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... =)

Updates and a story for your reading pleasure...

Please take my lack of posts as news that all is well and that we are super busy and living and enjoying life! So here are some individual updates on each of the boys: Landon: Landon is doing great! He is keeping us so busy with school and his friend's birthday parties. The kid has a much more active social life than either Jimmy or me. He is such a character. His latest phrases include, "c'mon Mommy! It be fun! in response to me telling him that he cannot go outside or he cannot help me with the dishes among other requests. I was frustrated a few days ago and told him that it is not funny and I am not laughing. He said, "sure you're happy Mommy!" He is such a good, sweet kid but boy is he quick and witty. He doesn't miss a beat either. He remembers things and notices things that fly right by me. He is a lot like Jimmy in that way. Boy, am I in for a treat as he gets older. We went to the doctor for his 4 year check up last week, yes my baby is now 4. He is 30lbs and 38" (both in the 10th percentile). He consistently is growing and gaining weight which is the important thing. His pediatrician is thrilled with how well he is doing. He loves school and next year will go 5 days a week for 2 1/2 hours in the morning. I can't believe it! It will help prepare him for kindergarten in which he will go 5 days a week, for a full day. *gulp* I cannot believe that he will be ready for that, but I think of the progress he has made in this last year and feel confident that it will be okay. Boy, am I going to miss him though. Five days a week in the fall already feels like a lot, but I have to say that he is excited to go to school every day. He has had the same teacher for two years and he adores her, so that will be a change, but she is wonderful and I think has helped him to really trust people and to feel safe and happy when he is away from us. Oh yeah- if I haven't posted this before, he is playing pre tball this year. Let me tell you... So darn cute!!! Jimmy is an assistant coach and boy is it fun to see the two of them do this together. He follows instruction well and seems to really enjoy it. The kids are so cute and the coach's, including "Coach Jim" are super patient and great with the kids. Lastly, Landon's birthday party with his friends has finally arrived. It's on Sunday and at a farm. The kids will have lunch, either pick strawberries or pot a plant, and will take a hay ride to see the farm animals. I'm excited because he loves farm animals and I think it will be lots of fun! Jordan: Jordan is reaching all kinds of milestones. He is walking. He is still kind of unsteady and mostly crawls, but he is taking the initiative to walk more and more and is standing independently a lot. We are going on a cruise at the end of May so my hope is that he is mostly walking by then but we'll see how that goes. We are phasing out the bottle and he is actually handling it pretty well. He had his 15 month check up last week is is 25lbs (50%) and I think 31" (90%)... I'm actually not convinced that he is going be a very big kid. I would be surprised if he stays at 90% but who knows. We call Jordan the "wrecking ball" and "Jordan Monster" if that gives you any idea as to what he is like. He is mischievous and is constantly into something but he is also super sweet and affectionate. Landon was much more laid back and still is pretty laid back. Jordan, not so much... He has some words now "dada, mama, ball, hi, yeah, no..." He can open the refrigerator and cupboards which makes life interesting and he is quick to get up the steps and wants to go up and down over and over again. He is so funny, has such a great laugh and a face that makes you want to squeeze him. Jordan and I will be doing the First Experience class at the preschool that Landon goes to, in the fall. I loved doing it with Landon and I'm excited to do it with Jordan. These boys are getting so big, so fast. It's fun to see and hear the boys play together. They are so silly, so noisy and so funny together! They fight and agitate each other already! Jimmy warns me about what is to come. He tells me that they are loud and that they are going to fight and will be physical. I'm getting better at letting them wrestle around as long as both want to do it. I know that this is only the beginning of me yelling for them to knock it off and to lower their voices. Oh, I have to share one story. Landon got a fish tank and fish as a birthday present. We put the tank on his dresser high enough that he could not take the lid off or get into trouble, so we thought.. Landon was in his room for quiet time one day and I went in to tell him that he could come out. I found the lid of his fish tank off the top and next to the tank of the dresser. I looked in to find 7-8 trains from his train table in the tank. I panicked for a minute but quickly rescued the trains from the tank and prayed that he didn't kill the fish. He didn't and we decided to move the tank into the kitchen where it would be better supervised. We noticed the tank was looking a little dirty and as days went on it looked even more so we decided to clean it. Jimmy cleaned it as I finished coloring Easter eggs with Landon and got him ready for bed. Jimmy kept saying how bad it smelled and I agreed that that it did but didn't think much of it. As Jimmy was cleaning it, he found a surprise. It was, well, poop. Yes, fish poop, but this was not fish poop. It was human poop- from a certain little boy. We were stunned! I asked Landon if he put poop in his fish tank and he said that he did. I asked him what happened and his response was, "I poop in my bed. I pick it up, and I throoooowwwwww it in the fish tank as he demonstrated how he threw it." Of course I told him that it's not okay to do that... that he needs to tell us if he has to poop and if he does poop.. that he could have really hurt the fishies... blah, blah, blah... So, there it is folks... Yep, he did.. Now you can close your mouth and stop laughing.

Our Many Updates...

Wow, I haven't updated in a while!! Oh where to begin... Landon had his nephrology and opthamology appointments several weeks ago. Both appointments went so well! Landon's electrolytes all were in a normal range and we cut back a bit on his sodium. The really awesome thing is, and I often forget this, that Landon is getting taller and gaining weight (he is a little over 30lbs now) and we have not had to increase his medication based on his weight. I take that back- we have increased his thyroid medicine because that was just a bit out of range and his Cystagon but both of those are to be expected. It's really great that we haven't had to increase his supplements because he is getting bigger. We actually keep looking for opportunities to cut some of his medicines back and have been able to do that on several occasions. His eye appointment went just as well. I really do adore his doctors. I don't know how we were so blessed with all of these extraordinary doctors and therapists who treat Landon as if he were their own and who are super smart and good at their jobs. Anyway, his opthamologist was so pleased with what he saw as far as the crystals in Landon's eyes. He had another physician come to check out the crystals and she was very intrigued. I almost asked if I could check them out but I didn't want Landon to have to cooperate a moment more than he already was because he did so well during the appointment. He listened and followed instruction SO well. I am so proud of him. Our other good news was that Landon's eye sight is great. At our last visit, there was some concern that his eye sight may not be good. Glasses wouldn't be the worst thing in the world, by far, and he would be stinkin' cute in glasses but I have to admit that it's something I'm glad we don't have to worry about right now. The chances of him needing glasses, well both of our boys needing them, is pretty good since Jimmy and I both have not so great eye sight. Oh yeah- so we learned that the crystals around about the same, in amount, as the last visit. This bummed me out a bit because I was hoping to hear that they decreased, but the doctor said that if the crystals remain as they are now that he will be thrilled. He was very happy to hear that Landon is not experiencing any discomfort or light sensitivity yet. What else? Well, Landon had his first pre t-ball practice this weekend. Yes, my baby is playing sports. It was kind of emotional, actually very emotional, for me. Lots of thoughts and emotions came over me as I watched him carry his ball to the car with Jimmy. Jimmy said that he is the smallest kind on the team, although there is one little girl who is close to his size. Our hope for this is simply that he will begin to learn how to be part of a team and follow instruction. The bonus was that he hit the ball of of the tee. I'm so excited to see him play! I remember learning about Cystinosis and being so scared of what our life would look like. At the time, the doctor assured me that Landon would be able to play sports and go to school... And here we are... In other news, my baby will be 4 in a little over a week. Yes, 4. I can't believe it. The "baby" in him is barely visible anymore. I can't necessarily say that I feel sad because he has been through so much and I'm so excited for where he is now as far as his health. And it's so cool to be the mom of a preschooler, although sometimes I feel totally unprepared for the task. This evening Landon, Jimmy and I watched a movie and then Landon and I played Memory (he beat me, legitimately) and then we played a board game. How cool is that?! Guess who else is growing up? Jordan. Oh Jordan.. Our 14 month old is starting to take some steps. I love seeing how proud he is as he stands independently. He has a bunch of other tricks too... He has hand motions for the songs "Wheels on the Bus" and "Pat a Cake." He loves when we sing and dance. He gets the biggest smile on his face and he absolutely melts my heart. He raises his hands to the air when we say, "how big is Jordan?" He is becoming more affectionate now. Before he wouldn't sit still long enough to give hugs but now he loves being close to us and gives big hugs and sometimes says, "awwww..." as he does it. He has also started giving kisses with his mouth wide open. Landon never did the open mouth kisses and I have to say, it cracks me up. It is so easy to make him laugh and he often laughs so loud and so hard that it makes us laugh. He and Landon were playing a game of "toss the teddy bear" in the back seat today and he was hysterical. I forgot how much fun this age is.. It seems like he is learning and growing so quickly. Oh I just adore these two little boys...

Rules are Rules

My boys rough house. I grew up with a sister and we didn't do much of that so this is foreign territory for me. Landon has had his share of visits to time out for moving past rough housing and pushing or hitting his brother. Jordan is an "in your face" kind of kid but it's not ok for them to try to hurt one another. Today I was in the kitchen preparing lunch and heard Landon cry, a real cry, an I'm hurt cry. I went to check and Landon came to me really upset. I cuddles him for a bit before he could settle enough to tell me what happened. Jordan hit him on the cheek with a wooden fire truck. For Landon's benefit, I told Jordan that it's not ok to hit and that he hurt Landon. He grinned reminding me that he doesn't understand. It was too late to address it at that point but I wanted Landon to see me address Jordan like I do him. Landon told me that Jordan should sit in time out. I explained that he doesn't understand but Landon insisted and suggested the high chair to keep him still. Ok, I will go with it. So, I sat Jordan in his seat and told him why he was in time out. Landon wasn't done. "Mommy, the timer," he said. Of course.. So today, Jordan had his first time out and enjoyed every moment of it.

A Weekend Away..

Well, we did it! Jimmy and I took our first adult trip away from the kids ever! We did leave Jordan with my mom when we went to the Cystinosis conference in April, but this was the first time both of us, away from both kids, who actually knew that we were away... They did great with my mom and a HUGE thank you to my mom for watching them. Landon's medical needs can be overwhelming to someone who doesn't do it every day, but my mom took care of it all without a problem. It's so nice to know that we can do this and not worry. Taking care of Landon's medical needs involves eye drops 4 times per day, formula through his G tube 4 times per day including once at 2:00am and add onto that entertaining a 3 and 1 year old for an entire weekend in a home that is not your own. And, we came home to a clean house and laundry done. She is a rock star! The weekend was great! We went with some great friends and Jimmy's brother and his wife. Great company, casinos, a fancy dinner, adult beverages, beautiful Niagara Falls, and sleeping in until late morning made it a very pleasant weekend! The weather was cold, cold, cold and felt colder than even the coldest days that we have had here in Pittsburgh lately- maybe it was because we spent a bit more time outdoors than we did when it was cold here. I kept thinking, though, how much Landon (because it doesn't take a whole lots to get Jordan excited yet) would have loved certain things- lunch at the Rainforest Cafe, the sight of the falls...). We agreed that it will be worth a short visit this summer with the boys. =)

When Did This Happen?

Over the past few weeks I have had the conversation, with several different mom's, about how incredible it is that our babies are no longer babies- they are big kids. Landon's birthday in April, his 4th birthday, seems to be the first in which he just cannot, cannot be seen as a baby anymore. Technically this is his 3rd year in preschool (first year was the Mommy and Me class) but I still didn't really consider him a preschooler. He was a toddler in my eyes. But 4- he is a preschooler with one more year of preschool left before I put him on the bus and send him off to kindergarten from 8:30am (when he steps on the bus) until 4:15pm (when he steps off the bus). I'm taking deep breaths as I type that... I had my first parent/teacher conference last week. I got lots of great feedback. He doesn't like to clean up tries to weasel out of it like he does at home sometimes, but that's certainly something we can work on. He also plays helpless at times but his teacher is on to him and he tells her everything that goes on it home. I guess we can't get away with much. He knows all of his shapes, he knows of all his colors, he is trying to write his name, he's working on using scissors... He is potty trained and does everything required completely on his own. He is very friendly and very social. He has some good buddies that he plays well with and makes attempts to play with a cute little girl in his class but she hasn't taken the bait yet =). "He's a pleasure and we just love him." Those are certainly words that I appreciate hearing as a parent. His teacher had him last year so went through a whole lots of transitions with him. When he started in her class, at not even 2 1/2 years old, he refused to let me leave and cried hysterically when I left him (to the point that he threw up one day and I almost had to take him home). He barely ate anything at all and the few bites he did take, he would pocket and she would have to have him spit it out. Now, he runs in the room barely saying bye to me and she said he often asks for seconds of his snack. She also mentioned that he enjoys showing off his belly and G tube every so often and the other kids are quite intrigued by it. When the kids have their senses and body parts lesson, I am going to go to his class and talk to them about what his G tube is and why he has it. And what really moved me to post this was this evening-- it seems like all of a sudden he wants to be so independent and he actually is able to do the things that he says he wants to. Our toilet is high so his little potty sits on the floor of our bathroom so he can go independently. He wanted to use the big potty so asked me to go in with him. I watched as he pulled his pants down and put the seat on top of our toilet. I moved the stool, that he uses to wash his hands, over to the toilet and asked if he can climb up and sit down himself. He grinned and did it without must hesitation. He was so proud. He went potty (including #2 which made me happy because he tends to save poop for when I put a diaper on him at nap time- he actually hasn't pooped on the potty in months) and then pulled toilet paper off and wanted to wipe himself. He really did a good job. He flushed the toilet, put the lid down, moved his stool over to the sink and washed his hands. Then when it came time to brush his teeth he wanted to get his tooth brush on his own (I had to move it to a place where he can reach) and took a stab at brushing his teeth by himself with help from me to be sure he did it well enough. Then he rinsed the brush off and put it back. I really love this age for so many reasons- he has a great imagination, is so eager to learn and is so much fun. But I have been in this role of being a mom of a baby, then two babies. Being the mom of a preschooler seems so odd and unfamiliar although exciting and fun. The conversations we have and the things that he understands are so strange and incredible. I just have found myself wondering a lot of the past few weeks- when did all of this happen?

Birthday Party

Well, the big birthday party is over. It happened on Saturday. So many things did not go as planned and Jimmy and I felt a lot of stress that day, to say the least, but when it comes down to it our baby turned 1, the people who we love were present to celebrate this milestone in Jordan's life, the kids (ours and others) seemed to have a blast and these things are what contributed to the party being just wonderful.