Updates

I'm sorry I have not posted! All is well, but so busy. Landon is doing so well and Jordan is such a good baby, but of course, I'm still working on getting into a good routine with the addition of our little guy. Landon had an appointment recently with his nephrologist. She is pleased with how well he is doing. As I mentioned, his cystine level is .03 which is well under our 1.0 goal, he has 100% kidney function (which hopefully means that a kidney transplant won't be necessary for a long time), his electrolytes are all within a normal range. She actually considered cutting back on his phosphorus supplement but decided to leave it for now. His phosphorus level is what we have struggled with the most. When he was discharged from the hospital I remember it being 2.8 and they wanted to get it to 4. Landon's nephrologist was a fellow and was supervised by another physician until recently. I remember that physician telling me that we might never get it to 4 and Landon's norm may just be in the 3's. My first thought was "no way, we're getting it to where it needs to be!" And it's there! Landon is still doing wonderfully at school. He tell his teachers that his brother cries all of the time (haha, which is very far from the truth)and is very comfortable with his friends and teachers. He is still going to therapy for feeding and his speech therapist (who has been working on feeding with him) has started speech. His speech has come a long way but he is still a bit behind. He loves therapy and adores Miss Shelly (his therapist). He is eating well and his therapist and nutritionist have wanted to cut back on the amount of formula he gets but his weight has remained the same since December so they are hesitant to cut back at all. This may have to do with the fact that on many days he doesn't get the total amount of formula that we intend to give him because he has been going down and waking up from his nap later than usual. I hate to give him formula too close to dinner so on some days he misses out on those calories. We have made it a priority to make sure that we get the total amount in him. Jimmy and I put some careful thought into when he should get the formula so that he consistently gets what he is supposed to. Hopefully we'll see a difference on the scale in a month. If not, we will add some formula to his diet. I have come a long way in my acceptance of the formula. I hated giving it to him for a long time. I wanted so badly for him to eat. Now that he is eating, I don't hate it so much... I think he eats as well as many kids his age. He tries most things that we put in front of him, has at least one good meal per day (in which he eats and gets a sufficient amount of calories... But, the difference between Landon and his peers is that he is still not quite on the growth chart and has some catching up to do. I posted on the Cystinosis group about the problems we are having in getting him to gain weight. One parent told me that she has been told that our kids need to consume more calories than most to gain weight because their bodies have to work so hard to function. It makes sense, right? Between that and the metabolism that he has probably inherited from Jimmy, the poor kid probably burns calories faster than he can eat them. Too bad he was blessed with my metabolism, right?! I do not have that problem! Lucky me, right?! On another note, I am SO SO excited to tell you that Jimmy, Landon and I are going to the Cystinosis Research Foundation's (CRF) conference in April. I am so excited to be a part of it- to have the opportunity to listen to presentations by researchers who are working so hard to find better treatment and a cure for Cystinosis and to meet our Cystinosis family. I have made such great friends around the world and am so excited to put faces with names. Jordan is going to stay behind in Pittsburgh. It's a bit risky, as per his pediatrician, to put him on a place and expose him to lots of germs in a poorly ventilated area. Plus, she told me in a very nice way that he really won't miss me all that much. =) It made me feel good to know that! He is young enough not miss me as long as someone is loving and caring for him. It's going to kill me to leave him! And I can't promise not to shed tears, but this is a great opportunity for us and I know he will be much more content at home. The conference is in California so we will be far from home! I think that is all the news from now!

Our Good News

The call from Landon's nephrologist came on Thursday. She had good news. Landon's recent cystine test (the level of cystine in his body) was 0.3. Our goal was to get it below 1.0!! All his electrolytes are normal which seems very clear considering that the child never stops running and has unlimited energy- just like an almost three year old should. She followed that by telling me that the lab processed Jordan's blood and that we would not have to have it drawn again (I think I posted about that in the last entry) and that Jordan's cystine level was .08. Everyone has traces of cystine in their body. Jordan does not have Cystinosis. I cried happy tears. And then I felt sad... Sad for Landon... Jimmy came home from work and told me he felt the same way. It's awesome news, but we grieved for Landon again. I posted in one of the Cystinosis groups on Facebook that I am anxious about the day that Landon asks me why he has to do things that Jordan does not. Many parents responded that it has really never been an issue, and that one young lady told her mom that she is glad that her brother doesn't have Cystinosis because boys complain too much. I told Jimmy that I hope Jordan doesn't get bigger than Landon at too young of an age. His response, "who cares?" Yeah, I guess I will probably care more than Landon ever will.