Welcome Jordan!

Wow, it's been over a month since I posted! Time flies when you are adjusting to life with two kiddos! Jordan Patrick was born on January 15, 2013 at 11:35am. He is a sweet at his big brother was as a baby, although recently it seems like he is becoming quite a firecracker. He knows what he wants and what he does not want and is sure to communicate that in the best way that his one month old body/personality knows how to. This means that he presses his lips together and gives a dirty look when we try to offer him a pacifier, yells out when I put him in the crib just a tad sooner than he is ready and protests loudly when we put him in the swing. He's sweet but fiery. Landon is a very proud big brother. He rushes to his side when he cries and asks to hold him often (he holds him for a moment, points to his facial features and names them, gives him a kiss and gives him back). I, along with my mom, took the boys to Children's Hospital last Wednesday. Jordan is now a month old and we planned to have them draw blood to check his cystine level. If it's elevated, it's an indicator that he does have Cystinosis and from there they will do a genetic test as a final confirmation. Landon was also due for blood work (he goes every 3 months now to check his cystine level and electrolytes) which by the way, all turned out beautiful. This could explain all of the energy that the child has- he's feeling good. His mom, on the other hand, doesn't have quite so much energy! Well, to make a long story short. There were 4 attempts made to get blood from Jordan. The first attempt was a success, but they did not collect enough. The final three attempts were not at all successful. The lab staff sent the first sample anyway, with hopes that the lab in California will accept a bit less than the usual protocol. We still don't know if they will accept it. So, we wait. I wish I knew that we were simply waiting for results and not waiting to find out if we have to start back at step 1, but it is what it is... So all in all, life is wonderful although a bit chaotic in our household. Jimmy and I feel as if we are always busy- changing diapers, giving baths, bed time for both, feeding (feeding, feeding, feeding!)... It's wonderful and exhausting all at the same time. We wouldn't have it any other way. =0)

Paging Dr. Landon...

Landon got some pretty cool items for Christmas this year! We have been busy with art projects (mostly drawing and stickers)... We tried painting but he refuses to wear a smock or change his shirt (on the couple occasions that we tried) so he is not allowed to paint until he gives in... He got some pretend play items like a castle, fishing box and doctor kit. The doctor kit was a must have this year... We wanted him to be able to explore, in a fun way, things that he experiences regularly. When we go to the doctor he always points to an instrument, hanging on the wall, and tells us which part of the body that instrument goes with. He doesn't at all mind when the doctor (not nurses- he gives them a very hard time!) listens to his heart and lungs with the stethoscope... Shots, band aids, the blood pressure cuff are all a different story. I watched him today put a band aid from his doctor kit first on his wrist and he said "I hurt" then on Daddy's wrist- "daddy hurt" and then on mine "mommy hurt." He put the blood pressure cuff on his arm and then gave Jimmy and I a turn then lastly, gave us all a shot (or maybe took blood?). I hope that it gives him a sense of control in this medical area in which none of us have much control over. There are things that he has to do no matter how much he hates it and no matter how badly Jimmy and I wish we could do it for him. A big fear of mine is that one day, when he is older, when I can't hold him in my lap, just put him in the car seat to take him to the doctor, when it's not enough to tell him to choose where he is going to sit and to ask if he wants to help me put it in the extender; that he might tell me no and refuse to go through this stuff anymore. So what do we do in the mean time? Be honest about what is going to happen (on an age appropriate level), give choices when we can, empathize (I'm sorry that it hurts and I know that this is not fun but it will be over soon)... Let him experience his emotions- we certainly went through lots of them since his diagnosis and will continue to do so but challenge him to be optimistic, count his blessings, be happy and be grateful.... Anyway, Landon is a resilient kid, a bright little boy... He is so sweet, happy and joyful with just enough spunk and fire in him to get him in trouble at times but also to beat whatever challenges are placed in front of him. I don't think we'll have to worry all that much about him! He continues to do well eating and we may even be able to wean him from the formula a bit. He has really impressed not only Jimmy and I, but his therapist and nutritionist. My expectation when writing my last post was that Baby Jordan would have joined our family by the time I updated again. That hasn't been the case. His mama is pretty uncomfortable and goes to bed each night hoping that he decides to make his entrance that night or the following day. The 15th is eviction day though... I am due at the hospital at 7am if he doesn't make his appearance before then. We are beyond excited to meet him and to be a family of 4 with two little boys! I got a taste of what I'm going to be in for as Jimmy and Landon threw socks at each other, and at me, today in playing a game of "snow ball fight." Our lives changed once, for the better, 2 1/2 years ago and I know it only gets better from here. So c'mon Jordan- Mommy, Daddy and Landon are ready to meet you!!

Welcome 2013!

Happy Holidays!! Our poor, sweet boy was sick Christmas Eve and finally seemed to be back to normal this past weekend although he still can't tolerate the full amount of formula particularly in the morning. He had a nasty respiratory virus and was so tired, so grumpy and just a big mess... Fortunately Jimmy was off work the whole week so I had help during the day. Despite his sickness, I'd say we had a pretty good holiday. Seeing Landon's reaction to Santa Claus, Elf on the Shelf, the Christmas Tree, the lights and so forth was incredible! It just gets more and more fun. He still asks for Santa aka Sansa although getting him to sit on his lap or get close to him is a whole other story! Despite being sick, he continued to eat pretty well and now that he is not only feeling better but still not getting the entire amount of formula that he was on before, he is eating REALLY well. You may be thinking that it's great and we should just stop giving him formula. It's not quite that easy although his therapist told me on Monday that we can really begin to talk about weaning him a bit. In other news, we will becoming a family of four any day now. My due date is not until January 23rd but about a week ago, my doctor told me that this baby is making progress and we should expect him within a week or two. I went through some major, ridiculous nesting. Last Thursday, the day I was told this, I pushed my body to the limit and paid for it afterwards! Again, fortunately Jimmy was home not only to help but to keep me a bit grounded. The thought of not being able to take care of my boy for any period of time makes me a nervous wreck. I have been away from him once before, for two nights, but he was with Jimmy who knows exactly what our day to day looks like. He knows how to do meds and give formula, he knows his antics and can comfort him just like I can. We are so blessed to have incredible family who are close by to fill that role when Jimmy is at the hospital with me but it's hard to put into words and charts and lists and notes (I'm trying, believe me!) what our day to day is like. Yes, I'm crazy.. I know.. I admit it, but it doesn't help my anxiety. I have to say though that we are so excited for Jordan Patrick to join our family! My body is ready be done with pregnancy- well I guess not ready enough because I'm still pregnant! This little guy has done a number on me which is not something I experienced with his big brother! I know that the transition will be tough at times, but I think that Landon is going to be the best big brother. I cannot wait to see him in that role. We do not yet know if Jordan has Cystinosis. The plan is, hopefully, to test the cord blood. A sample will be sent to the only laboratory in the U.S. that can run the test for Cystinosis. We hope to get it sent out ASAP and that we will have an answer by the time Jordan is 3 or 4 weeks old. So friends, the next time I post will probably be to provide the announcement that our second little boy has arrived.

Feeling sad.. and blessed..

These past few days have been particularly emotional. I have tried to avoid watching the news and seeking out information about the tragedy that occurred in Newtown. It physically and emotionally hurts to think about what those families lost and to think about the heroes who put their lives on the line to protect those sweet children- I've always appreciated teachers, but this takes it to a whole new level. Jimmy has been keeping up with the latest news and sharing some of it with me, but I can't do it. I've said before but as therapist (I still identify as one despite not working as one right now), I know how to stay in my head and protect my heart so that I keep myself together and I know that I have to stay away from knowing too much or thinking too much about sad things.... I feel much deeper since Landon was diagnosed... I experience emotions in a very intense way, not only since becoming a mom, but again, since Landon was diagnosed. With all that being said, we are reminded to count our blessings... Landon continues to thrive and love school, he is eating well and when weighed by his Nutritionist last week had gained almost 1 pound in 5 weeks! He is about 24lbs now. I realized yesterday that he has gained about 10lbs since he was diagnosed a year and a half ago. How incredible is that? I think we are going to continue to see a nice spike in weight gain in these upcoming months because he is still getting 900 calories a day from formula (through the syringe- no longer through the feeding tube, remember...) but he is eating so well so is getting lots of calories every day! A few things that we are currently working on with Landon is getting him to slow down when he eats and not stuff his mouth with food. This is fairly typical for an 2 year old, but it's not what we want to encourage. We also are working on getting him to handle pureed foods better (yogurt, pudding, applesauce).. The irony in this is that many people have asked me why we aren't starting fresh with him and going back to pureed foods. That's what we start babies on, right? Well, pureed foods aren't so easy for those with G tubes who by nature of the tube, can experience respiratory issues. It doesn't feel comfortable to eat pureed foods. It makes sense to me now because Landon ate pureed foods prior to getting a G tube but after he was diagnosed and came home with the G tube he had no interest. I have said this before but our Landon is quite a little comedian. I always say that he is a combination of Jimmy and I- Jimmy likes to make people laugh and I'm very easily entertained (that's why our relationship works so well!)... Landon lives to be silly and make us laugh, but so easily laughs that big belly laugh that leaves Jimmy and I laughing ourselves. At the early age of 2, he found a friend who thinks he is hilarious so Landon is sure to be silly with Jack so that he can get a good laugh out of him! Landon has taken a liking to Sansa (aka Santa)- from afar (he will not get too close and we could not get Christmas pictures taken with Santa this year) and enjoys our new Elf on the Shelf tradition. He wakes up in the morning and asks "Where Elf?" Jimmy and I are REALLY enjoying the holiday season this year because of Landon... And lastly, we are getting ready to welcome Jordan to our family. He will be here in 4-5 weeks and we're sure that Landon is going to be a wonderful big brother (it may take some time and patience to adjust). He is going to fit the role just fine... See- I told you that we are very blessed!

Tis the Season

It's that time of year, friends... cold and flu season. Blah! I pray to make it through this season with no hospitalizations. I *knock on wood* have actually not been sick, with the exception of a mild cold here and there, since I was 7 months pregnant with Landon. My poor husband, on the other hand, catches something that puts him down and out pretty much every year. I used to get really sick every year. I blame that on working in daycares and school districts where I was exposed to millions and millions of germs. Anyway- Jimmy caught something a little over a week ago. Laryngitis and a lot of terrible night time coughing was the result of the virus. On Friday Jimmy said that he hopes Landon doesn't get sick. Sure enough, it started on Saturday. The sneezing and boogies started and off it went... As the days go on, his symptoms change a bit. He's not sneezing so much now but has the nasty cough that kept Jimmy awake night after night. It's so strange to me because he's not all that symptomatic at this point. But, the poor kid is so sleepy, so clingy and so groggy much of the day. I was concerned enough about his behaviors that I accepted an appointment at his pediatrician's office at 7:45 last night. If you know me, you know that I avoid messing with bed time at all costs unless it's a fun, special occasion every once in a while. The pediatrician confirmed that he has no ear infection, sinus infection... which is great, so now it's just a matter of waiting it out. In the mean time, our boy is very much attached to me which I think is pretty common for sick kiddos. They want mama. He insists on laying on top of me which is a bit difficult with my protruding belly. Tonight I put him to bed and actually laid in bed with him. This never happens simply because Landon has been sleeping in his crib since 2 weeks old so is not used to sharing his space. It's a good thing but sometimes I love the idea of cuddling with him in bed. Anyway, he draped himself across my belly and fell asleep. I'm sure there is reasoning behind it which centers around comfort- as uncomfortable as it is for him is as comfortable as it seems to be for Landon. But, I'd like to think that he is comforted by being close to his baby brother. =0) One other thing I wanted to mention is another article that I wrote about Landon. I may have mentioned it a while ago but I was asked to write up a blurb for a handbook that the Cystinosis Research Network was creating. They came up with the idea to create a handbook that could be distributed to families whose children are newly diagnosed. I was thrilled to be considered! I think that this is so important and can be a way to not only educate, but to give hope to families who receive that devastating news. I remember how scared we were when Landon was in the hospital and first diagnosed. We had no idea what it meant and a lot of what we read was not so great. Luckily we were put in touch with families who were able to give us hope and answer questions, but having literature such as a handbook would have been wonderful. Anyway, the handbook was created and is available in electronic form. It should be available in print this summer. Very cool! It is so important to me to offer hope and optimism to other families in our community. Landon is still one of the newbies, particularly when you think about how few people are diagnosed, but he really is a testament to how a person can thrive with this disease. His nephrologist is kind enough to give lots of credit to Jimmy and I for taking care of him. But I give most of the credit to incredible doctors who know their stuff and a very resilient little boy. Jimmy and I do what we are told to do and we love our son... We're parents... Anyway, here is the link if you are interested... http://www.cystinosis.org/ Just go to that website and click on the link to the handbook. Enjoy!

News in Landon's Therapy World

Oh it's been too long, again, since I've updated! We have been so, so busy!! I updated last about our Second Annual Lots of Love for Landon Halloween Event.. We don't yet have a final number of what we were able to donate because I still have some checks that need to be sent to the CRF. We're also adding to the number of donations as a result of a recent family loss. My grandfather died on November 2nd, the day before our fundraiser. The interesting thing is that my grandma (his wife) died last year on November 3rd. Their deaths were similar in that they functioned well and were in fairly good health and all of a sudden fell ill then died within weeks (like 2 weeks...).. When my grandmother died, my grandpap insisted that in lieu of flowers, money be donated to the CRF in honor of Landon and in memory of her.. So, we did the same thing when he died. My grandparents were devastated when Landon was diagnosed with Cystinosis. They prayed all the time for a miracle and for a cure for Cystinosis. If they have any say up there in heaven, there will be a cure in no time!! I had posted a while ago about going to the Children's Institute and that they were hoping to conduct a few tests to see if Landon had abnormal breathing patterns while eating and if he had a particular swallowing disorder. One test indicated that he does have abnormal breathing patterns when swallowing, but with further testing called a Barium Swallow Study we learned that he does not have the particular swallowing disorder that was suspected. This was obviously a blessing although if he did, there are exercises that we could have done with him to help. The researcher and therapist who we met with explained that they do not often check for this disorder with children. It has only recently been studied in adults. They said that Landon's abnormal breathing patterns may actually not be all that abnormal. It's just that children are not usually studied so it's hard to compare. After learning this information, the speech therapist referred us to a site closer to where we live with a new speech therapist and new nutritionist to work with.. I was a bit hesitant because I felt very confident in this therapists skill set but was assured that the therapist he was referred to, close to us, is wonderful and very good. That was an understatement in my opinion. Shelly, Landon's new therapist, is indeed wonderful. She has this subtle confidence, does not mess around in the least bit (which is becoming very important with our mischievous/boundary testing little man) but is so much fun and has a way of catching Landon's attention. He enjoys every moment of therapy- from pushing the button in the elevator, to playing in the waiting room with very cool toys to the therapy session itself)... We met with a nutritionist last week, who is also exceptional in my opinion, and he happily got on the scale to be weighed and measured. This is huge in itself, because he usually fights getting weighed and measured with every ounce of his being. So let me give you a little insight about where we are going with therapy right now. First off, the nutritionist got him off of the feeding tube. Hallelujah!!! Now, he still gets the same amount of formula that he's had while getting feeds from the feeding tube but instead, we designate a thirty minute period 5 times per day. We give him 2oz of formula, wait 10 minutes, 2 more oz, wait 10 more minutes and then 2 more ounces of formula. This is all given through a syringe rather than a slow drip over the course of an hour. If you'd see the syringe you'd probably gasp a bit. It seems like a lot of milk to be shot into his belly at once but *knock on wood* he has been doing well with it. He threw up a couple of times over the past week (both times right before bed time) but was also a bit congested which always makes it harder for him to tolerate the formula. Not using that feeding tube is so freeing! I cannot even tell you how good it feels to let Landon hop into bed at nap time and bed time and not hook him up to the feeding tube. And, he has been eating a little bit better! We went to a birthday party over the weekend and he kept asking to eat. After eating some potato chips, dinner was served... He ate, and swallowed, chicken and macaroni and cheese. He even took a few bites of birthday cake. I was thrilled and was so excited to come home to tell Jimmy. We went to dinner on Thursday with my mom and sister and he happily ate, and swallowed, steak fries. Again, I was thrilled! The excitement of seeing Landon eat and swallow new foods is overwhelming to me sometimes. It gives me hope that this will be behind us someday. I'm not in a hurry but I see a light at the end of the tunnel.. Today, we met with Landon's speech therapist for our third session. Her plan is to not have us try anything at home that has not worked in the office. First off, Landon sits in a chair, with a belt on that has two arms on it without any protest (this is pretty incredible to me)... Right now he gets a 1:1 reinforcer which means that for every bite he takes, he gets the reinforcement to play with a toy. This may mean that after a bite of a chip, he gets to put the car into the garage and then we take the toy away until he takes another bite. As he sat down, Shelly told him to take a bite of any of his 5 choices (tiny bit of yogurt, tiny bit of applesauce, 3 blueberries, 2 pieces of a potato chip).. I should add that he never eats yogurt or applesauce. At her request, he shook his head and said "no" so she completely turned away from him, offered me a piece of a potato chip and when I bit into it I was able to put the car in the garage. Within 5 seconds, Landon took his bite. This continued for 30 minutes, with no protest from Landon, and he finished everything on that plate. Now, will it go so easy at home- probably not at first because I'm mommy and we are in his comfort zone. I was instructed to have one skill session per day for 15 minutes. This is only half of the time of what he did today, on his first try, with Shelly. I plan to create a special box that will include the toys that he gets to play with during these skill sessions. Another goal is to get Landon to drink milk. He drinks very little aside from water. I have been struggling with some guilt around this because I know how much he loves, craves, water as part of having Cystinosis. But I watched him happily drink a mixture of water and milk today with no problem at all. Shelly assured me that it is fine to give him water but to give him his "milk" during meals and during skill sessions. So, in a nutshell, this is what's been going on with us. I have to say that it is so cool to see Landon in this current stage he's in. He is become so much fun! Jimmy and I decided to make an impromptu trip, last weekend, to Oglebay to drive through and see the Holiday lights and visit the gift shops. It was awesome! Landon loved the lights and kept saying, "oh wow! oh wow!" I love these reactions. It was a beautiful day and as we were walking, we saw a large, absolutely gorgeous nativity scene. I pointed to Baby Jesus and said "Landon, look, there is baby Jesus." He looked but didn't respond. As we walked back (well we walked, Landon ran the entire time) and again, passed the nativity scene, Landon stopped and began to make a crying sound and rubbed his eyes. I giggled and told Jimmy that he was crying because he saw a "baby." Hey- at least he's prepared for what's to come in January, right?! =0)

Second Annual Lots of Love for Landon Halloween Fundraiser

Well, yesterday was the big day. I haven't posted in a little while because we have had a very, very busy couple of weeks. I will post more about the things that have been going on in another entry, but let me tell you about our second annual Halloween fundraiser! The fundraiser was a big success!! We are so, so, so blessed! There were approximately 200 people in attendance. There were lots of great costumes which made it pretty difficult for our panel of judges to pick only a handful of winners. The food, catered by Cooked Goose Catering, was yummy and they included large cupcakes with filling inside of them. DJ Hypnotyza played great music and kept the night moving along. He really was wonderful. He accepted the "job" with very short notice- the change in the trick or treating schedule affected our original DJs plans. His four year old son was counting on him to be the other transformer and go trick or treating =0). I say "job" because DJ Hypnotyza took nothing for his time. The kids particularly seemed to enjoy him. It's such a big deal for the people who do know us to be so generous, but for those who are generous and give of their time and don't know us, it's pretty incredible. There were about 11 door prizes given away, valued at $50-$100 per prize some of which included gift certificates for restaurants, pet salons, massage and facials, Children's Museum, Carnegie Science Museum, Gymboree Play & Music, the Pittsburgh Cultural Trust; The Chinese Auction included over 30 giveaways some of which included footballs autographed by players from the Pittsburgh Steelers, a Chinese Auction with a little over 30 giveaways from hand made corn hole boxes, wine and chocolate baskets, chiropractic baskets, spa baskets and giveaways, kids bath items, Steeler tickets, alcohol baskets.. Remember, I am just naming some of the prizes.. All in all, it was a great time.. It seemed like those who were there enjoyed themselves. There were some tears from the kiddos who were unhappy about the night being over. We estimated that between $5,500-$6,000 but will get a final number once we submit everything to the Cystinosis Research Foundation. Thanks to all who supported us by being there, donating, reaching out to all of the generous businesses who donated to us. We love and are so thankful to you all!!! xoxoxox Jimmy, Lauren & Landon