Good news...and then some

Prestons MRI came back same as last time. He still has the lesion on his brain that is unexplained. They said it could have happened in utero. The good thing is it isn't growing. So as far as his seizures are concerned we just see if it happens again and if he gets a high fever we may put him on preventative medication. Also Prestons urine has returned to almost normal. We went yesterday and there is still a trace amount of blood in it but it is still in the acceptable range. It is almost completely gone! Praise God! Another positive for Preston is his hand is finally almost completely healed from his cut. Took a long time and a lot of boring days spent in the house not able to use his hand but now he is back to normal! In fact T-ball starts soon and he was out practicing with James this weekend. Preston is back to his normal self again!

 Phillip decided to scare the life out of us by having a seizure a couple weeks ago. Luckily we were at James' parents house when it happened so they were able to keep the boys while we rushed Phillip to the hospital. It was a pretty bad seizure and he completely stopped breathing. If it hadn't been for him not breathing I would not have called an ambulance. By the time we got him to the ER he was almost back to normal. They think he had a febrile seizure but we are not sure. I took him to the doctor the next day and he did have strep throat so it is possible that he had a fever spike. We are also working on getting Phillip less dependent on his feeding tube. So far there has been a little improvement in his eating by mouth but in turn he lost 3 pounds. That loss dropped him from the 37th percentile in weight to the 9th percentile. He can't afford to lose any more weight but I don't want to lose any ground on his mouth eating. I decided to give it another month and monitor his weight closely and if he drops more within the month we will increase his tube feeds. We are shoving higher calories in him and that causes him to have diarrhea so that isn't helping! It is such a battle with him on the food front. A huge balancing act. I have to journal every thing he eats and how many calories it is. That way we know about how many calories he takes a day so we can figure out how much he needs via tube. It is a lot of work but i know in the end it will all work out! He is still going to his special school and loving it. Still doing his 3 therapies a week. He sometimes struggles with them but for the most part he is doing well. Phillip is a champ during his infusions! Last week i put him in his high chair got him all hooked up and walked back into the room and he was asleep. Best thing he could do is sleep through it and I think he finally figured that out!

Payton is doing great. A little onry but doing well. His weight is pretty good and so far he hasn't picked up strep from the other two. He is looking forward to starting school in a couple weeks too. He is hoping his friend Ella is in his class again. Payton fortunately his doing amazingly well. He may be a little tiny but he has a HUGE personality!

So that is about all that is going on with us! I have mentioned my friend Kelli (mylifegodswill.blogspot.com) before in other posts and I ask that you continue to pray for her and her family as she continues chemo treatments. Kelli is improving and through her God is showing us that miracles happen. She undergoes her next round of chemo Thursday and I ask you all take time to pray for her on Thursday, that the chemo continues to work and that her body heals. Thanks again everyone one!

Much love!

Summertime blues

Here we are at the beginning of summer and somehow we have landed 2 sick kids. Aren't they supposed to be sick in the winter and well in the summer??? Phillip and Preston came down with a cold a couple weeks ago. Of course Phillip has decided to hang on to it for a while. After almost 2 weeks of coughing and runny nose he seems to be improving. Thank goodness. I don't do snot well haha!
Preston is a different story. He ran a high fever and Sunday morning he seemed to have had a seizure. We took him to the doctor and she said he looked ok. Just a cold and to contact his neurologist. His neuro decided it was best to go ahead and get another MRI to make sure the spot they saw on the MRI he had last year hasn't changed. In the meantime Preston started peeing blood. I have to say it is a little shocking to see your child urinating something that looks like tea! Back to the doctor we went. After lots of tests and his pediatrician consulting with the nephrologists (kidney specialist) they believe Preston has some thing called IgA nephropathy. IgA nephropathy is a kidney disorder that occurs when IgA-a protein that helps the body fight infections-settles in the kidneys. After many years, the IgA deposits may cause the kidneys to leak blood and sometimes protein in the urine.  We cannot be sure this is the right diagnoses unless we have a kidney biopsy. At this time I don't think that is necessary and neither do the doctors. We have to monitor him closely, watch his blood pressure and make sure his urine is returning to normal. If he has another episode of large blood in the urine then we will revisit the idea of the biopsy. In the middle of all this we found preston had strep throat starting so luckily they were able to put him on antibiotics before it got bad. Wednesday Preston had his MRI and that went well. They had to put him under to do it so he was a little goofy and off balance but he seemed back to normal by wednesday evening. I am hoping they call with those results sometime today. Through all this they have been pretty good. Preston hates needles but was a trooper with all the testing. Sooooo thats what we have been up to! Not much right. hahahah! Time to run! I hope everyone is well!!!!!