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.