Summer of rest

For then last five years I have said " this is going to be the summer ofnrest and relaxation". Sigh. It hasn't happened yet. This summer is going to be the summer of medical appointments. Right now I have physical therapy two times a week and Maddox has feeding therapy one time a week. Maddox had an ear infection over memorial day and was on antibiotics.

Last week we were in the cities to see a pediatric endocrinologist. His blood work came back fine ( growth hormone is low, but was expected because of his weight and calorie intake) and she really wants to rule out celiac disease, so we head back to the cities next month for Maddox to get scoped. That will be two appts. One to meet the GI doctor and one for the scope. We will need to give Maddox stuff to clean him out, which will be fun while out of town, and then he is non a clear liquid diet for almost 24 hours. Mason is getting his eardrum patched in July a's well.

And Maddox is going to the allergist the end of this month to retest his potato allergy. In dec that allergy was almost gone. I hope it is gone, because if he does have celiac disease, almost all of the packaged gluten free foods have potato starch in them. If he is allergic to potato still, I will need to make his bread, crackers, pretty much everything. So, in the next 5 weeks we have 7 appts on top of the therapies between preop appts and actual appts and followup appts.

Right now, Maddox is having a very hard time with his reflux because of the antibiotics. The dr. let us stop them two days early because Maddox was ( and still is) coming to me crying "my mouth has yucky stuff in it and it hurts. Can I have my medicine?" and all he will eat are crackers and bread.

So, we were given another medication (prevacid), but because of his dairy allergies, we couldn't give him the dissolvable tablet, he has tom have the capsule with granules, and I need to get him tom take the granules without chewing them. ( our dr. is amazing. He called the pharmacy and asked them to find a lactose free med that would work so I wouldn't have to).

For the last two days I have not been able to find a way for him to take the granules. He has oral aversions from all the reflux and illnesses from food, so he is very afraid of mixed textures and new things. The boy hadn't eaten much in days, has been cranky, tired and has had very little energy. I called the pharmacist last night and she suggested a Popsicle slushy. And what do you know?! It worked!! So this morning he woke up without any pain, actually ate a little bit of breakfast and ate some lunchmeat at lunch! (he hasn't eaten any meat in two days).

My mom, me and the boys went to two homeopathic stores to find some dairy free probiotics. At the first one they tried to convince me maddox would be ok with the dairy probiotic. That is always frustrating for me. When people don't get how severly allergic he is to dairy and I have to keep repeating myself. They did take down my name and number and said they would call if they found a dairy free one. We did find a dairy free probiotic at the 2nd store, but they couldn't guarantee that it wasn't potato free. So innate the number of the company and am going to call them. I just want to cry writing this. All I am trying to do is help my son feel better, and I can't. At least not quickly.

I am so tired out. He is acting out a ton because he is in pain, is hungry and tired. I feel terrible for him, but I can't let him get away with stuff either. Tonight my sister and I are going to kungfu panda 2 with mason and her boys, so that will be fun and a nice break. Mason is frustrated with Maddox and he needs a break too.

Maybe by August things will settle down. If Maddox does have celiac, then the behaviors will lessen once he is gluten free and we will have some answers regarding his height and weight. My fear is that they will say everything is fine and we won't have answers or be able to help him. Not that I want him to have celiac, but at least I know what to do about that and it would explain a lot.

So, I guess this is a bit of a vent/whine session. I am sorry about that. This is where we are at over here and what is going on. I will try to get pictures on here soon. We have been getting out and having fun as well. And I have a new babysitter who is incredible so I have been filling in at work more( which is a welcome break. It is like a paid vacation because I love the job so much).