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Alex is still going in for weekly blood draws to check both his liver and hemoglobin levels, and also his reticulocyte count. We have looked back at the data, and have decided that the steroids are not working so, we are weening Alex off them. This picture of him screaming, sums up how he feels about going thru the steroid withdrawals. The drugs make it such that he has no patience when his life doesn't go exactly as planned. This is compounded by his lack of ability to communicate, and makes for a very frustrating time at our house. He is 19 months old, and knows what he wants most of the time but, can only tell me what that is some of the time.
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Since Alex was put on the steroids, we decided to do what is known as home bound schooling. The steroids are suppressing the T cell part of Alex's immune system which limits his ability to fight off bacterial infections. These types of infection in children that have Alex's illness, are the number one cause of liver failure. We are trying to limit his exposure by removing our other kids from the school environment. That has come with its own set of problems. Prior to this, Lauren requested to be home schooled, as she didn't like having to get up and get dressed. Now, that we have done it for five weeks or so, she begs to go back to school, where it is not so hard. Zeke acquired desks for the kids, and it has made it so much easier to have a set place to do schoolwork.
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Everyone likes to take their turn in using the desks. I am finding that our children are quit good at adapting to any situation. We went from being gone most days (even if the kids were not in school) to literally not leaving the house, with the exception to going to church. The kids don't seem to mind this. Of course, there are the few times when it has rained for a period of a week at a time, then we have gotten stir crazy but, all in all, that part has been easy.
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Lauren has responded to Alex being sick much like a mother would. She fusses over whether he is hot, cold or hungry. That has been a huge help for me. The steroids make Alex very hungry, and in the last five weeks, he has gained 8 pounds. He goes thru times where he gets up two, or three times a night to eat, so having another person home during the day to fill that need is SO nice. Carson has accepted Alex being sick, like life has never been any other way. However, having him home during the day, and Lauren acting like his mom, has made it as if Alex and Carson are the only kids. When Alex is in a particularly foul mood, he takes his frustration out on Carson. Carson just takes it, then turns around, and will sing to Alex to calm him down. What a good example of not holding grudges. Carson is a very sweet, and kind hearted little man.
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Easter was pretty calm here. Alex got croup, but it was the first holiday this year that we were not in the hospital. :) The kids hunted Easter eggs at the park, and then again once we came home. At our house, we have a tradition where the night before Easter, we plant jelly beans, and Easter morning, the jelly beans grow into suckers. It is so fun watching the kids' excitement as they find the suckers. This Easter it was pouring rain so some of our suckers melted.
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We made bunny rolls to have with our Easter dinner. The kids enjoyed helping cut the ears, and placing the eyes. The recipe suggested peppercorns but, as my kids thought it would be too hot to eat, we tried flax seeds instead. They were too difficult to place properly. Then we tried chocolate chips, but they were too big. We tried poppy seeds but, again, they were too hard to place. In the end, peppercorns worked the best for looks and ease of placement.
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We went to the local feed store and bought the kids each a baby chick. They are baby bantam chicks and are about the size of golf balls -- tiny little things. Lauren has named hers "Peep", and Carson named his "Pirate". The first night home it rained, and so, the chicks slept in the house... Now, I'm having my doubts if they will ever leave. |
| Lauren carries hers around wherever she goes. It sits in her desk while she does schoolwork. It hangs out with her while she watches TV. She even takes it outside on walks. Lauren does all the walking, and the chick goes along for the ride. |
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Carson likes to put his chick on his shoulder, and Pirate just sits there quite content. I should mention, that we also bought four pullet Barred Rock hens from a local chicken farmer. That way, we actually have some chickens that will be laying eggs soon. The day after we got the pullets, we discovered there was a hole in the chicken coop. Several weeks ago, during the last round of tornados that came thru Tulsa, our neighbor's fence fell down. Their dog frequented our yard for several days, and while he was here, he must have ripped a hole in the side of the coop that we hadn't seen. So, we spent several hours looking for the hole, and then chasing down two of our flock that had found the hole. We finally managed to get them all back.
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I have found that home schooling takes a lot of structure, and that is something I'm not very good at. I can stick to a schedule if I have too, but being the enforcer goes against my "hippy" ways. I'm all for the learning, but trying to teach different concepts in a set format is difficult. Lauren is learning how to tell time, and read, all on her own. This has been both, slow and painful events. The weather has been warm here, and we even managed to squeeze in a trip to the zoo. I think it is cute that Janelle, sucks her fingers just like Alex. Alex only uses his right hand to suck so, when we go to the hospital, I make sure his IV is placed in his left arm or, hand and the blood draws are done from his right elbow. I am starting to wonder if the bruising of his arms will ever go away. In February, while we were in the hospital, they drew blood ever 12 hours from his poor, little, right elbow. :( |
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I have begun the process of starting up the greenhouse by cleaning out the grow beds. The grow material is hydroton, a clay pebble that the plant roots grow thru and around them, like tiny threads.
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It took the kids and I all day to sift, and clean, one bed. There are a total of three grow beds.
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Lately, Carson, has been trying to do "science experiments" in my bathroom sink. This usually consists of wasting my household products such as, soap, shampoo, mouthwash, etc. and it creates a huge mess. So, I sat down on several occasions, and talked to him about the importance of not wasting water or, soap. It costs a lot of money when you dump the entire 48 oz. bottle of shampoo down the drain. If he would like to use his own money to buy shampoo, then he can waste it all he wants! The result was this: Zeke walked into the bathroom and noticed a horrible smell. When he investigated, he discovered that someone had pooped in the trash can. He came and asked if I would like to handle this situation, or should he take care of this one. In interest of child preservation, I took care of it. It went like this:
Mom: "Carson, why is there poop in my trash can?" I then told him that, at no time, is he not to waste my money by NOT flushing the toilet." "We have money just for that purpose."
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Lauren is now seven, and I find myself looking at her, wondering where my baby went. It reminds me, of how little I thought she was, when bringing her home, and how fragile. Now, she has more skin that is bruised than not, thanks to her new found confidence in riding her bike without training wheels. Our next step is to learn how to use the brakes, instead of "the jumping off method" she current employs. She is very willing to try new food or, go places she hasn't been. She is also a "Little Mom", always asking if we brought enough food, and all the supplies that our outing requires.
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It is springtime, and it seems like it happened overnight. The spring is a nice time when all the green comes back to Tulsa. I say that, knowing that, it means a totally different thing here, than it does in AZ. I love watching the trees and plants come back to life.
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It reminds me of, how blessed I am to live where I do, and to have the ability to communicate with family far away. Alex, is at the stage that I love. He may have a hard time telling me exactly what he wants, but there is no guessing when he discovers things. His excitement is almost contagious! He is my only kid to play Peek-a-Boo all by himself. It is so, adorable to watch!
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I find that depending on what Alex eats, he gains, or loses weight in his face and upper torso. If he eats a lot of salt, he swells and retains fluid. I would describe his symptoms to that of a pregnant lady, in the last trimester. He grunts when he bends, is short of breath when sitting, and at the end of the day, he's so swollen. I will be glad when he is off the steroids. The current plan, subject to changes at any moment, is to wean him off steroids, and let his body heal. Once he has been able to build up his immune system, then we would put him on retuxmab, which will suppress the other part of his immune system. |
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He may need more IVIG to help support him. Current labs will show that information. He will continue to have them drawn once a week. It is our understanding, that Alex's body is currently making more red blood cells, than his white blood cells can break down. The silver lining is that his body breaks down the red blood cells, and reuses the material to make new ones, which does not make his body deficient in the vitamins and minerals used to make red blood cells.
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This last six months has defiantly taken it's toll, not only, on how our household runs, but physically too. It used to be that I had brown hair with gray high-lights. It happens, no matter what you do, at some point everyone will have gray hair. |
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It's a natural part of life, and one that needs to be faced and dealt with. Now, I have gray with brown high-lights.
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There is a series of books call "Pete, the Cat" and Pete has a saying, "It's all good!" We hope this finds you all well, and good. Love you, |