Just because I haven't done much today but feel like I should be adding to the blog regularly and because lately the blog has been all too serious for my taste! So since I think some of you may find it amusing to hear of our adventures today - here are my confessions...
-the boys ate breakfast in the living room (it was homemade, nut and soy free that helps right?)
-the boys had leftover breakfast food from yesterday for lunch
-I didn't take a shower til almost 1100
-I put on pjs after said shower
-we've watched Roli Poli Oli twice already
-I didn't make Noah take a nap hoping he'd go to bed a little early (so I can watch my shows before it's too late)
-we're having a different leftover breakfast for dinner I think with mac & cheese
-neither of the boys got dressed today - into clean pjs
-when Noah wanted to take off his pjs I let him
-there are toys all over the living room floor and they are going to stay there until tomorrow
So - we are taking a mini vacation today. The boys have loved it - I think a laid back attitude has done them both some good. They both love pancakes and french toast and banana bread so the menu options today probably seem like a rare treat (a very carb heavy treat). Hope you are all having a laid back day and able to relax at least mentally if only for a day or an hour until the reality of things to get done sets in again!
Thursday, April 16, 2009
Wednesday, April 15, 2009
Josh is a Mystery
Seriously - the child is baffling even the allergist (who thankfully I feel comfortable with and have had several people tell me how much he helped/they liked him)
We are right now playing a game of theories and guessing basically which I don't like but at this point I do not know what else can be done. I went in with my list
So I had my list of reactions - when they happened, what he had eaten, where he had been etc.
Good news - we have noticed taht the eczema definitely flairs up when he has soy (or green beans or peas) so we are still keeping all soy out of his diet (and green beans and peas)
Bad news - his eczema is not completely gone even though he is on his second round of oral steroids; this is odd and concerning given that we are aggressively treating the eczema (when he isn't taking the oral steroids he gets steroid ointment all over twice a day, between those he is slathered 2 - 3 times a day in a heavy cream and gets daily long baths) So the thing here is that it could be a bacterial infection on the skin (we all have bacteria on our skin I guess, but you can be more sensitive to it when you have eczema) but to treat that you take an antibotic in the pencilin family - Josh is allergic; the next set of antibotics is often a cross-reactive drug and I just can't see without knowing that this is defintiely the cause see risking it given how he has reacted to so much lately. Plus an infection on the skin does not explain the wheezing/swelling of the face. But it could also be that he has a mild allergy to something else that he is getting regularly that is just keeping the eczema flaired
Josh just does not fit into any of the normal areas of reactions. The food allergy that causes anphaltytic (sorry about the spelling) typically shows happens 5 - 15 minutes after eating said food. However, if it is a mild allergy and he ate a higher amount than normal, the delayed reaction could have made more sense - so we are looking at all nuts right now and keeping them out. He had blood test done today for nuts (16 different kinds) and also for apples and strawberries (the strawberries were because they couldn't test on grapes/cranberries and these are two berries he eats often...then I guess we'll see if that needs explored further, he eats raisins/craisins often and hasn't had any swelling/breathing issues with them); apples are a fruit he eats/drinks regularly as well and we are wondering if that is causing the eczema to increase and never really clear up. It will be about a week for these results. He did have skin test today done for bananas and rice (two foods common to the two ER visits) and both were very negative - that was good to know.
I was also told that we need to avoid nuts, peanuts and shellfish. Josh is a "very allergic" child and these are ones that can be learned so to speak by early exposure to them and so it is probably best to just keep these out of his diet for a year to 3. We had no intention of introducing shell fish til at least 2, so we are going to hold off and cut nuts and peanuts (which are in the legume family with soy go figure) for at least a couple of years.
We are right now playing a game of theories and guessing basically which I don't like but at this point I do not know what else can be done. I went in with my list
So I had my list of reactions - when they happened, what he had eaten, where he had been etc.
Good news - we have noticed taht the eczema definitely flairs up when he has soy (or green beans or peas) so we are still keeping all soy out of his diet (and green beans and peas)
Bad news - his eczema is not completely gone even though he is on his second round of oral steroids; this is odd and concerning given that we are aggressively treating the eczema (when he isn't taking the oral steroids he gets steroid ointment all over twice a day, between those he is slathered 2 - 3 times a day in a heavy cream and gets daily long baths) So the thing here is that it could be a bacterial infection on the skin (we all have bacteria on our skin I guess, but you can be more sensitive to it when you have eczema) but to treat that you take an antibotic in the pencilin family - Josh is allergic; the next set of antibotics is often a cross-reactive drug and I just can't see without knowing that this is defintiely the cause see risking it given how he has reacted to so much lately. Plus an infection on the skin does not explain the wheezing/swelling of the face. But it could also be that he has a mild allergy to something else that he is getting regularly that is just keeping the eczema flaired
Josh just does not fit into any of the normal areas of reactions. The food allergy that causes anphaltytic (sorry about the spelling) typically shows happens 5 - 15 minutes after eating said food. However, if it is a mild allergy and he ate a higher amount than normal, the delayed reaction could have made more sense - so we are looking at all nuts right now and keeping them out. He had blood test done today for nuts (16 different kinds) and also for apples and strawberries (the strawberries were because they couldn't test on grapes/cranberries and these are two berries he eats often...then I guess we'll see if that needs explored further, he eats raisins/craisins often and hasn't had any swelling/breathing issues with them); apples are a fruit he eats/drinks regularly as well and we are wondering if that is causing the eczema to increase and never really clear up. It will be about a week for these results. He did have skin test today done for bananas and rice (two foods common to the two ER visits) and both were very negative - that was good to know.
I was also told that we need to avoid nuts, peanuts and shellfish. Josh is a "very allergic" child and these are ones that can be learned so to speak by early exposure to them and so it is probably best to just keep these out of his diet for a year to 3. We had no intention of introducing shell fish til at least 2, so we are going to hold off and cut nuts and peanuts (which are in the legume family with soy go figure) for at least a couple of years.
Monday, April 13, 2009
Just some notes...
We had an appointment today for Josh (no surprise there huh?) with his regular doctor. It was orginially to discuss Josh's speech regression. I am sure just being a little sensitive but knowing the struggles that Noah had because of all the ear infections and that Josh got more than Noah I want to stay on top of it. We will have a meeting with some of the folks from the early intervention program and they will do an evaluation. Josh understands almost everything and can follow instructions so I'm sure he's doing alright, just more worried about letting the speech slip.
We also were prescribed an epi pen to carry for Josh given this recent history of severe allergic reactions. The prescription came with 2 and also a trainer which will be really great to make sure that anyone who watches Josh is familiar with it and knows how to administer it before calling 911 and then us. I will feel much safer while we are traveling across the country having an epi pen on us in case we need it. His doctor also was glad we already had an appointment with the allergist to continue testing. He said this sounded more like a nut or shellfish allergy, as these are typically more severe - I don't think it is nuts, there are nuts in his granola bars that he eats almost daily and hasn't reacted to. He also hasn't had any shellfish. We are still at a lose and hoping for answers soon. The no soy has definitely helped his skin though so that is good news.
Noah and Josh are both doing pretty well though I can tell they are ready for their Daddy to be home for awhile. We are looking forward to that day, I know they will make it until then, just been a little more needy and emotional the past few days.
I have also decided that if the boys diet counted as one it would be the most perfectly balanced diet around, lol. Josh sat tonight at dinner and ate his bread, a few noodles, and 2 or 3 servings of brocolli. Noah had 2 servings of ham (whoohoo another meat he will eat - though last night he told me it was yucky but when I asked him again to try a bite or he couldn't have a cookie he tried it and liked it - imagine that!), noodles but no brocolli and only 1 bite of bread. It is too bad we can't just combine their appetites and likes of food. Oh well, they will get what they need and are being offered nutritious meals and healthy snacks (well mostly healthly most of the time snacks - we do allow some sweets). Oh yeah and dinner was after Noah had an orange and a half almost - 30 minutes later he said I'm hungry can we eat? Yes we are having leftovers and I was starving too - it was a good time to eat.
We also were prescribed an epi pen to carry for Josh given this recent history of severe allergic reactions. The prescription came with 2 and also a trainer which will be really great to make sure that anyone who watches Josh is familiar with it and knows how to administer it before calling 911 and then us. I will feel much safer while we are traveling across the country having an epi pen on us in case we need it. His doctor also was glad we already had an appointment with the allergist to continue testing. He said this sounded more like a nut or shellfish allergy, as these are typically more severe - I don't think it is nuts, there are nuts in his granola bars that he eats almost daily and hasn't reacted to. He also hasn't had any shellfish. We are still at a lose and hoping for answers soon. The no soy has definitely helped his skin though so that is good news.
Noah and Josh are both doing pretty well though I can tell they are ready for their Daddy to be home for awhile. We are looking forward to that day, I know they will make it until then, just been a little more needy and emotional the past few days.
I have also decided that if the boys diet counted as one it would be the most perfectly balanced diet around, lol. Josh sat tonight at dinner and ate his bread, a few noodles, and 2 or 3 servings of brocolli. Noah had 2 servings of ham (whoohoo another meat he will eat - though last night he told me it was yucky but when I asked him again to try a bite or he couldn't have a cookie he tried it and liked it - imagine that!), noodles but no brocolli and only 1 bite of bread. It is too bad we can't just combine their appetites and likes of food. Oh well, they will get what they need and are being offered nutritious meals and healthy snacks (well mostly healthly most of the time snacks - we do allow some sweets). Oh yeah and dinner was after Noah had an orange and a half almost - 30 minutes later he said I'm hungry can we eat? Yes we are having leftovers and I was starving too - it was a good time to eat.
Sunday, April 12, 2009
Happy Easter!
What a wonderful day - what a blessing today is! I am so thankful for God's love for us is simply amazing! We had a rocky start to the day after a night of not sleeping well for any of us. Mommy was grumpy, the boys whiney and that's just not fun for any of us. We made it to church, we were quite late but I was so blessed by the service and grateful that we made it. After coming home we had a little lunch and tried to relax before dinner with friends. Noah fell asleep on the couch, so sad but needed. Dinner was wonderful, it was great! The food was amazing, the conversation better. Noah and Josh both loved playing with Simon and Ethan and Andrew.
This morning the boys certainly enjoyed their baskets. I worried they would miss that there was no candy to be had in their baskets, but I don't think they knew to miss it and were thrilled with the trucks, Little People, golf, etc. etc. Enjoy the pictures. More importantly enjoy what this day means, what Jesus did for us all freely!
(that picture right there by the way is belly bumps - Noah and Simon have created this/copied this, I am not sure but get great pleasure from them!) Friday, April 10, 2009
ER...again
So we had a wonderful morning. I will post more on that later I promise! I am so grateful for such great friends. Anyway, this morning and early afternoon we spent at the airplane museum with Kristen and her boys, Jacob and Jon. we packed lunches and had a grand time. On the way home, I thought that Josh looked like one of his eyes looked a little puffy. Soon he had 2 eyes that looked puffy and was playing with his tongue, he seemed to be scratching it. I called the peds clinic to see if they could see him, the nurse asked me a few questions and instructed me to give him Benedrayl and go to the nearest ER. He continued to grab at his tongue, he was trying to pull on it. She told me if he got any more swollen to pull over and call 911 - scary words. I drove quickly to the ER thankful that Kristen stayed with Noah. As soon as I walked in, the nurse behind the desk said "he's having an allergic reaction, do you know what to?" NO! I don't know, it is so frustrating. He was immediately taken back and I was thankful to be there, shortly after arriving Josh was given an epi shot. Within a few minutes, he seemed to be breathing calmer and he looked so much better. He is on another round of oral steroids for six days and also for the weekend benedrayl every 6 hours. We will follow up on Monday morning with his ped. and on Wed. with the allergist. Of course we wont' be able to do skin testing on Wed. but I still want to meet with the allergist. Things are getting serious quickly and I don't know what is causing the reaction - there has only been one common factor in both ER visits - rice flour. We will talk about that this week, until then no rice flour! I continue to praise God that Josh is safe and well despite the struggles he has had this week, he has gotten good care and Noah has been in safe hands while we have had to take care of Josh.
I promise to post tomorrow about Noah's latest funnies - he has had quite a few, he's such a sweet boy! Also I will have lots of pictures from our adventures to the airplane museum today!
I promise to post tomorrow about Noah's latest funnies - he has had quite a few, he's such a sweet boy! Also I will have lots of pictures from our adventures to the airplane museum today!
Monday, April 6, 2009
A Little More Info and Waiting
So I spoke with an allergist today at the clinic, not Josh's normal allergist since he is out of the office this week but at least someone. I think the man probably thought I was an overprotective mother - he's partially right so oh well. Apparently there will need to be more tests done and the blood test that Josh had previously can come back negative to things that he has a clinical allergy to - I think from what I understand that the blood test depends on there being a certain amount of antibodies (or something of that sort) to a given allergy in the blood, so it could also be that he is more allergic to soy beans than we first thought. I was told again that if he has a reaction where he is wheezing or has any swelling in the face to go to the ER - yes of course! I also asked about how long he will need to be off the Zyrtec before a skin test can be done; 7 days! 7 long days he'll have to be off his medicine. I told the allergist that if he was fairly certain that on the 15th they would be doing skin tests I would take him off of it, but that if not I couldn't see just keeping him off his medicine for extra days when it helps him. So starting Wed. no more Zyrtec for at least a week, if there is an outbreak of hives or anything like that, we'll just have to reschedule. Not quite any answers, but at least we are working on it and someone understands that this is getting serious and we are not just going to wait and see. I asked him about green beans - Josh had some on Friday - not a food we normally have (I'm not a fan at all) and they are also in the legume family which is what soy beans are in - it could be that caused the reaction on Friday. Now to hope that the oral steroids help clear up all the eczema that has flaired up, the bumps and rash type stuff and help him not itch since we'll be off Zyrtec for awhile.
There was also talk about whether he has asthma, whether if the reactions continue to involve any wheezing or swelling in the face if an epipen will be prescribed so that we will need to carry it always. I hope that we get answers next week, I am not looking forward to holding him down while they prick his skin numerous times...not at all but will remind myself that it is for his good and try not to cry hysterically during the process. For now, I will be the soy-police and ensure that at least that much is out of his system constantly. You will have to forgive me if you offer him anything and I scruntize every last ingredient - don't take it personal!
There was also talk about whether he has asthma, whether if the reactions continue to involve any wheezing or swelling in the face if an epipen will be prescribed so that we will need to carry it always. I hope that we get answers next week, I am not looking forward to holding him down while they prick his skin numerous times...not at all but will remind myself that it is for his good and try not to cry hysterically during the process. For now, I will be the soy-police and ensure that at least that much is out of his system constantly. You will have to forgive me if you offer him anything and I scruntize every last ingredient - don't take it personal!
Sunday, April 5, 2009
Still Searching
We haven't dropped off the face of the earth I promise! We are doing alright, it has been a long couple of months but we are hanging in there and doing fairly well. I am so appreciative of all the support and love we have from friends and family. Josh is doing okay, though it seems reactions are getting more serious and we are not sure exactly what the cause is. It could just be the soy but we are trying to be very very careful that there is no soy near the boy! Still, Saturday we were at the acute care clinic because he again looked like he had a rash or hives, after a long wait the doctor came in finally looked at him and said you have an allergic reaction buddy what did you get into or eat? Gee if only it were that easy to figure out! I am frustrated and going to work this week to get more answers and talk with the allergist at least again because we cannot avoid things that we do not know to avoid. We will do whatever we must to help Josh not have reactions but we need some guidance. He's on oral steroids for 5 days, this wasn't what we wanted to do but we are out of options. Poor baby, he's more fussy and clingy and I can't blame him at all. Even after 1 complete dose he still is quite broken out. I am praying for guidance and patience as I deal with getting in touch with the allergist and having our concerns addressed so that we can partner with this doctor for Josh's care...I am afraid that the "momma bear" may come out though, I do not think I will allow them to pass me off (of course I hope that they don't but am preparing to fight if I must for him to get some care!)
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