In November we started the Spina bifida clinic for Joshua. The doctors are so different from those in Syracuse. It has been a long experience just making the appointments, let alone seeing them. Since we are going to Utah in a week, I wanted to make sure the boys saw doctors for prescriptions and what not. We have seen so many doctors this week. We went to an opthamologist for Josh's eyes and thought that since we were there, we might as well get Gavin checked out. All was fine with him. Josh needs a patch for his eye to make his weak eye stronger. Then we went to Gavin's neurologist for his seizures. All is good with him. He is doing great on the meds. Then we went to Josh's urologist... and let me tell you, that was a pain setting up the appointment. Anyway, things are good with him. We are doing more tests to make sure he is emptying his bladder like he is supposed to. If not, we may have to go to cathing again... I hope not.
A few weeks ago, I decided to take Gavin to his pediatrician because he has been complaining about a stomach ache for a while now. I thought he was allergic to milk, so I asked them to run some tests. They did. The milk allergy along with the basic allergy panel came back negative. They tested him for celiac disease which came back as a weak positive. For any of you that don't know what celiac is, it has something to do with the small intestine not being able to break down gluten (wheats), and so it irritates the intestine. Being a weak positive, I wasn't too worried about it. Then I got to thinking how much this would drastically change the way we all eat. I talked it over with Mac and we decided to retest him. So... today we went in to his peds and got him retested. We have an appointment with the gastroenterologist on Friday and the results should be in then. We just want to make sure that this weak positive wasn't really a negative.... just to make sure!!! I am really not sure how I am going to handle a kid with Spina Bifida (having 7 doctors) and a kid who has seizures and possibly Celiac disease. I had a breakdown today because I couldn't handle the possibility of this happening. I have a great husband. The kind and sweet person that he is, he let me know that I would handle it the way I have handled Josh and Gavin. This will JUST be one more thing. I feel like I am going through this with them. It has been one of the toughest things I have ever had to do.
8 comments:
Linda, you need to know that you can do this. When Aren was two and a half I was told, while he was in the hospital getting blood transfusions, his immune system wasn't working and it was attacking him, instead of viruses and such, like it should. I wondered how on earth I would deal with this, especially with Rick being in Bosnia at the time.
Two months later, I watched my seven month old daugther Lily as she lay dying in a hospital, Rick was still in Bosnia, and I was told that Lily also had no immune system. I had two children with multiple doctors, multiple medications and I lacked the strength to handle it.
It was a long road, as you know ending in the death of Lily and Aren receiving a bone marrow transplant within the same year. I never knew the strength I had, or the strength my children had, until we were thrown into this situation. It will be the same with you, I promise. You will be an amazing mother to these boys and you will do what it takes to get them and keep them healthy. You have strength that you can't even imagine.
Wow. I don't know what to say, Linda...you must have been one amazing spirit in the premortal life to have been handed all these challenges. You and your family are in my prayers...
Linda, that is so much to handle. I'm sorry! And I'm here to help--let me know if you need me to watch kids, or just get you out of the house!
you know im here. you are one amazing girl!!
Linda, you are such a great mom. I have always been amazed by your faith and strength. I'm not too far away if you ever need some help.
Linday, I will echo that you are doing great! Those boys are so lucky to have you.
As far as Celiac goes, I will say that if you have to do that, you can do that too! When Clara was allergic to wheat (different from Celiac, I know, but with some similar restrictions) I felt so overwhelmed at first, but I soon realized that if there was ever a time to not be able to eat wheat (or all gluten) this was the time! There are so many amazing alternatives for flours and baked goods--even cookies and pretzels and pancake mixes that you can buy ready-made. I won't lie that it took some getting used to, but I was amazed once I started looking around at how many things were still available. If he does have it, he will feel so much better without the gluten in his diet--and he'll still be able to have cake for his birthday--it'll just be made with rice flour and potato flour and stuff instead of wheat flour!
You can do it!
Have a wonderful trip.
Hi Linda! I got your blog of your facebook, I love these things. Your boys are so sweet, and they have such an amazing mommy! You are way stronger than you give yourself credit for. You've been an example to me forever. I know I can't help physically because we live so far away from each other, but if you ever need a listening ear...I've got two! I love you to pieces.
Linda. Oh, honey. I love you and I know you are, and always have been, a wonderful, strong, amazing mom. I know that things are tough more often than not. But I also know that Heavenly Father is watching over you and your little family every step of your rocky road.
I don't know a whole lot about celiac disease, but I do know some people who suffer from it. Just like the previous comment, you would be surprised to see all of the gluten-free things they have now-a-days. There's gluten-free chips, pasta, cakes. I've even actually considered putting Boston on a dairy-free, gluten-free diet for his Autism. There's been lots of studies that a large majority of autistic children actually have celiac disease. I've talked to tons of moms who have made the switch to potato flour, etc., and they say although it's a definite change at first, it turns out to be something that can be adjusted to.
I know that doesn't help much when you feel like your plate is already so full with other things, but Mac is right -- it's JUST one more thing. :) I love you, Linda, and you and your family will definitely be in our prayers.
Post a Comment