a much needed update...

I have been avoiding blogging lately because I was too stressed out to sort my feelings and write them down. I have had a lot on my plate lately so I opted to wait until things settled down a bit before returning. I love blogging because it is the only way you'll get me to keep any kind of a journal with three small children. lately I have been having a hard time with my three year old son, Landon. He is the peacemaker of our home. He hates contention and is definately sensitive. He says the sweetest prayers and loves to share his toys and candy with others. he has recently discovered that being a boy isn't so bad! He lives in a very pink world but I am now finding homemade swords and guns and bows and arrows to defeat the bad guys. he is quite good at the sound effects, too. Anzlie can talk him into anything, so he is usually price charming while fighting the bad guys followed by a beautiful wedding where he marries barbie. They are so cute together! lately my family has been sick. Anzlie will have a fever for a day and still be bouncing off the wall, Ciera wants me to hold her -or so you think- but what she really wants to do is whine at your feet and arch her back and throw an "I dont feel good fit." Luckily for me, that only lasts a day or two. Landon is a different story. He had Pneumonia when he was a few months old and ever since then he has had upper respiratory infections a lot. He isnt sick all the time but when he does catch a simple virus it turns into something much worse very quickly. If he has a fever it shoots to 106 within a few hours. After many blessings and doses of motrin, he'll be better, but after a while I staretd to realize that he had a horrible croup and fever twice in october, the cough never goes away completely and again in december which puts us in the hospital again with 106 temp double ear infections and upper respiratory again. January went pretty well and then february he was sick again and the last two weeks! help! If it was any other kid I could handle it but when Landon is sick he doesnt talk at all. He wont answer questions he just lays there staring at the ceiling forever. Its so hard for me to know what to do for him when he gets sick. he also seems autistic when he is sick with his mannerisms but since he is only like that when he is sick, it's unlikely. After insisting my doctor check into why he gets sick so much, we headed to the hospital for a few blood draws. They came back abnormal. so we did another panel on the immunoglobulins and those came back abnormal. We are headed to the immunologist on monday to confirm the probable diagnosis of x-linked agammaglobulinemia. carried from me, if the is the cause of everything, there is a mutation of the x chromosome. they are low on B cells and so they dont mature and produce the antibodies they need to fight infection. Now for an important lesson I have learned. Landon has not been immunized yet. anzlie has, but I never did Landon. I generally wait until they are atleast one to start their shots, but with Landon I never felt good about it. there were even times I talked myself into doing it, but when we went to have it done the doctors office couldnt do it that day or they were missing his records! which is funny now because he didnt need records since he hadnt had any shots yet...ANYWAY, I am very glad we haven't immunized him yet because it says children with this rare disorder cant have the mmr, polio, chicken pox, or other live vaccines because there bodies might not be able to fight it off. I was thankful I listened to my maternal instincts on this. I was even asked well maybe he gets sick a lot because he hasn't been immunized. A mutation of the x chromosome is something that they're born with so that wouldnt have changed a thing. Wether its immunizations or something else, listen to what you feel is best for your child. I am thankful I did. Now the next step is finding out if he has this rare disease that runs in our family. I am thankful that you have been very informative Cherstin. It has helped tremendously. The treatment is plasma infusions once a month that give them the antbodies they dont produce. this treatment will be life-long and that depresses me. theres gotta be a better way! now our big dilemma is finding ou how to go ahead with our plans because insurance is a big deal now. its $5,000-10,000/month for this treatment. my medication is $600 a month and between all of us, we are thankful that daddy will be a doctor in a few years. I am in need our your prayers I am still holding out hope that Landon doesnt have this! I will keep you posted.... 6 more days! I love my little guy. He has had so many blood draws at the hospital lately last time we were there, he knew exactly what they were going to do and instead of crying he pulled up his sleeve, gave them his arm and turned his head and started whimpering. I was the one crying! he felt better after they gave him the pink band-aid. He was almost insulted that after that ordeal they would think of giving him the blue band-aid. He said, "no, pink is my fravrit!."