Enough Already

This is the boys the past couple of weeks. Their TRAPS has been flaring despite treatment. High fevers, swollen eyes, rashes, joint pain, stomach problems, ENT issues. The specialists that we have been seeing say this Enbrel the only medication, however, I do know a small percentage of people that have been to the NIH who have been told differently. What to do? I also started charting their symptoms in a calender so see if I can find a pattern so we can tell the difference between a true TRAPS event and other illnesses. Right now the boys are soooooo grumpy, I know that they don't feel well, but I have been feeling like we still need to have some normality in our lives. It has been years since we have seen a light at the end of the tunnel. It is funny because Tyler was recently on a basketball team with some of his friends. It was a great team that didn't win very often. After his last game he seemed down. I asked him what was wrong and he expressed frustration that he didn't win more. In one of those "mommy moments" I explained how grateful I was that he was not on a "winning team". He looked at me with shock that I wanted him to loose. I told him that if he was on a team that won all the time he wouldn't have worked so hard and learned so much, even though he felt like he was running all the time and not getting anywhere. Of course the scoreboard would agree with him, but I could see things the scoreboard couldn't keep track of. I guess in a way, I understand how he felt. I am tired of running all the time and seeming like the scoreboard isn't keeping up. It isn't that I don't have faith that something will give, I'm just exhausted in the meantime. I have grown dramatically in the past several years, as I'm sure my children have a well. It is just hard for me when I know there are answers out there, but I don't know how to get them

Spring Is In There Air

I'm so excited for Spring. Last week we had so much fun playing outside and going from park to park. I even signed Davin and Tyler up for swimming lessons next month. I decided not to do the "mommy and me" class for Ryan b/c I thought Davin might need me to cheer him on a little too much. Winter is always a little hard on us, not that the rest of the year is much different, it is just people get a little more stressed out with children who appear "sick" more in the winter than in the summer. In the summer most people just think my kids have bad allergies. I need to find a way to bring more awareness to the boys disease. I was trying to explain TRAPS to a doctor who was treating Davin on an emergency basis a couple of weeks ago. The MD said "I don't know about that disease, are you sure?" and "that is a very interesting story". Seriously, I thought of just telling him how to write the RX so we could be on our way. He felt that his symptoms warranted more investigation, as if his file is not thick enough. At any rate, I am very grateful for Spring to come. I was hoping to get the boys into the NIH this summer, but I don't know if I can sell that many cookies between now and then to afford the plane tickets. It would be nice to get the boys into the MD who found the disease so I can ask some of those questions that have been bothering me. For now I will enjoy those daffodils that just bloomed and wait for sunnier days.

What Is The Deal

So I'm on my 6th day of insomnia. I'm not sure what is going on. I woke up at 1 am and haven't been able to get back to sleep. I've taken melatonin, haven't drank any caffeine the day before, worked out early and have drank plenty of water. I've tried deep breathing, relaxation, praying, changing my environment and nothing has worked. It would be fine if I didn't have active children ALL day. I know by noon I will be crashing- just wish I could sleep when my kids do. I guess since the practical approached has not worked I should try eating some chocolate.

As far as the kids are doing- Tyler just received his report card and he is doing better than I thought. He has strait A's for his effort and all A's and B's. Not bad for a kid with a Central Processing Disorder. I am proud of what a hard worker he is. I know he has been getting very frustrated with himself lately because of his difficulties with handling noise and his recall abilities. But, he has proven to be a strong individual.

Davin is still as feisty as ever. I wish I had some answers for his health problems- the Md's have been ignoring the issues until the trial of Enbrel shots are over. But in the mean time, he is still not doing very well. No luck on potty training, still small for his age, still hypotonic, still showing language delays, still recurrent sinus and trachea inflammation, still inflammation in his intestines, still has rashes and his crazy toe, still eye swelling, still periodic fevers. I mean really- is there an end? The good news is Davin is doing great in Pre-School, he is starting to read, knows all is numbers and letters and can recite many things.

Ryan is so funny. He started in his terrible two's a couple of weeks ago. It was in coincidence with a TRAPS flare and RSV, so I was hoping that it was a result of his health issues, however, since he is starting to get better and still yelling/stomping his feet at us all the time, I think it is a behavioral issue tied more to his age. Oh fun. It is actually less guilt racking disciplining him for behavioral issues related to age than behavioral issues related to his health. I'm still not competent in corrective behavior methods when a child does not feel good. But considering he doesn't feel well 70 % of the time, I guess I need to figure it out right? Ryan is potty trained and starting to talk more. I think he gets confused between English and Spanish (since I speak both), but he loves to copy his big brothers and me.

Well, I'm going to try to lay back down. Good Night!

California 2009