For posterity in dealing with a child with food allergies as well as dietary problems, I will talk about what we are dealing with. Maybe there is another Mom like me out there.
JJ is drinking specialty drinks right now (Vanilla Elecare -30 cal as well as EO28) that are costing about $5 a drink. Multiply that by 4-5 times a day, and 30 days in a month and you have an idea of what we are spending just on drinks for him. The food is a bit easier as I can make it from scratch. But it is VERY limiting right now (with the results of his food allergy test back). I really need to find a support group for such dietary restrictions. Right now he is eating single or double food servings. But no real MEALS per se.
I am so thankful I have dealt with food allergies/sensitivities before. Both MM and EE are sensitive to gluten and casein. So I already do a lot of gluten free cooking/baking and not using dairy (or other substitutes with casein in it). But now I cannot do egg in any form (he has the most unusual allergy to it - the doctor prescribed an epi pen for his unusualness). I cannot even use tomatoes (which is like in EVERYTHING!) or beans (which is a main source of protein for vegetarians). I have no idea how to cook without tomatoes or beans! I do have some idea about baked goods without eggs (simply because of the research I have done on allergies). But it is not fun and it does not taste as good.
I have done a lot of research on raw foods, so I can make a lot of healthy raw substitutes for him (which leaves out eggs and such), but quite a few of them have nuts (nuts are something else he cannot have).
Add to that a $20 co-pay per doctor visit which is happening once a week, not to mention the 45 minute drive across town to physical and occupation therapies (with the rising cost of gas and all) which thankfully is only every other week. After being released from the hospital, he was about 11 months in physical development. In just two weeks he moved up to 12 months! :) I am thankful not only that he is so motivated, but that as a home school mom **I** am motivated and educated about how to do some of his therapy at home.
I watch JJ as he falls asleep (1-2 naps a day and then to bed at night) to make sure he does not have a chance to ruminate, and am right back in his room as soon as he wakes up to make sure he is preoccupied and not having a chance to ruminate. It takes him anywhere between 5 and 30 minutes for him to fall asleep (mostly because he fights it). No more leaving him in his room to cry it out when he is over tired and frustrated. I have to keep him calm and happy or he can fall back into the habit of ruminating.
I am SO VERY thankful that the Lord is STILL working on me (hello my name is Paula, and I am a continual work in progress). I am able to clean the house, home school the girls, love on JJ and still have some time to do crafts (I even created my own pattern for a crochet bun cover and will be selling some I made in my store soon!!) as well as crafts with the girls (look soon on the blog for AA's scarf she made). I am also able to have time with my beloved in the evening to play games and talk. AND I am also still able to some how have time to make food from scratch!
I say this not because **I** in myself am able to do this. But because I can do all things through Christ who strengthens me! I have been on my knees much more since all of this with JJ happened. I so want to encourage you that even though at times life may seem overwhelming (which I know it can, I am there right now), that somehow, through God's supernatural ability... you can. You can do so much more than you think you can. I never ever would have thought I could be doing what I am today. And it is only by crying out to God (even in the midst of the chaos) that His strength fills me and I am able to do even 1/4 of what I need to do.
I am not able to wake up and have quiet time with the Lord. Yet, throughout the day, as I call on Him, and wait on Him, and listen to and for Him, I am able to be obedient. I read His word when I can (mostly with the girls), but make a point to do it daily. Even if it is just one verse. And remembering to thank Him even in the midst of the chaos, for He has done so much for me, and I know that He can use the chaos for His glory. And I truly do have so much to be thankful for!
Gumball Machine Advent Calendar for Kids
1 day ago
3 comments:
Paula -- I was feeling sorry for myself today and then came here and know I don't really have any worries. Thank you for sharing! I put several verses of encouragement on my blog. Hope they can be helpful to you..
God bless,
Sallie
Hi Paula,
In response to what you posted, His Grace is truly sufficient for us! He gives us each the grace/strength to get through our hard times. What you see others go through you might think I could never survive that and visa versa but that is where God's Grace steps in and walks us through our valleys one step at a time! Remember I am always here for you if you need to talk.
I am looking through my recipe books right now to see if any of them might have some good recipes for you to use.
Hugs,'
Brenda
I know what you're going through, just not to the same degree. (((hugs))) Yes, God is there each step of the way to give us the strength and courage that we need each day.
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