I hate the saying, "it is what it is". What does that even mean? Even though I can't stand it when people say it, I have found that I have been saying it a lot this month. I don't know if it's because I'm frustrated again or if I'm giving up or if I've just resigned myself into a form of acceptance.
This month started off with the call to 911 and a trip to the ER. I still close my eyes and see Juliana purple and limp, not moving at all. It makes it hard to fall asleep. We followed up with our pediatrician like we were told to and he told us what to do in the even that she had any more febrile seizures. This week we followed up with her neurologist at Children's. He's not sure that she had a febrile seizure. In fact, he's not sure what happened to her that caused her to turn purple and stop breathing. Great. I wasn't happy about Juliana having febrile seizures, but at least we had a diagnosis, something to work with. Now we are back to square one, the unknown. Yay.
We ended the week with a visit to Juliana's GI doc at Children's. I already knew he wouldn't be pleased with her weight. Her neurologist showed us all her weights plotted out on her chart, and so I already knew what was coming. Her weight is plateauing again. She weighed in at 20 lbs 8 oz. In 3 months she's gained less than a pound. I tried to make the case that she has had a cold for the past few weeks, but that didn't really do much for the doctor. He's increasing the dosage on her appetite stimulant, and I have to get her evaluated by a therapist from his feeding clinic. Yay, more appointments, and this one may turn into a weekly one, so tack that on to the rest of her therapies. Juliana's GI doc thinks that she gets "fatigued" in the mouth and that's where her poor weight gain stems from. Ryan and I disagree (we have watched her chew on ice cube after ice cube after ice cube), but since this is one of the last things on his list of oral/motor problems, we are going to humor him so that he will rule it out and move on.
Normally after these disappointing visits, I get angry and discouraged, but yesterday when Laura (our speech therapist) called to get our concerns for Juliana's annual Early Intervention meeting and asked how I was doing after the doctor's appointment, my response was to shrug and say, "it is what it is". What is that about?
Well, I am definitely no expert, but I know you are not saying it because you are giving up. You are certainly not giving up if you even put in another appointment in your hectic schedule. I love and miss you all. I am so sorry about this crazy month you've had. I cannot even imagine it. You are such a strong person so I know you will get through it. I am not exactly sure how, but you do. You really are such an inspiration whether you know it or not. You are always willing to do anything and everything for your children along with trying your best with everything you do for them. It really blows my mind how hard you work to fit the therapies/appointments in your schedule, to play with Noah, to work through all of Juliana's medicine, to go to work everyday, to take care of Noah and Juliana when they are sick, to get up with them in the middle of the night, doing schoolwork at home and everything else you do. Just keep in mind that you are an all around inspirational person to look to as a model as a parent and a teacher. I really miss you guys and wish I was able to be there to help you all. I wish you all the best.
ReplyDeleteLove,
Holly
I think "It is what it is" goes right along with "whatever....". Sorry to hear the Dr. doesn't think the seizures are febrile & that you've had to add more appts. to your already busy schedule.:0( Hope Juliana's cold goes away soon!
ReplyDeleteI hate "it is what it is"! Bill's brother always says that and it irritates the crap out of me. I'm sorry you are feeling that way. I read an interesting quote today, you might appreciate "Saint Theresa says that the most horrible, suffering-filled life on Earth, looked at from Heaven, will seem no more than a night in an inconvenient hotel. "
ReplyDeleteJenna, I understand how you feel and I hate it when people say that saying as well. I kind of feel that way with our immunologist - it's kind of like we are getting anywhere cause they just aren't sure what to do. Keep pushing on, that's all I can recommend.... and you're doing that so that's in the best interest of Juliana. Thinking of you and if you ever need to talk - please call or text me anytime. really, anytime.
ReplyDeleteI say that when I'm overwhelmed and feel like I can't do anything about it... I can't imagine how you must feel with all this. :(
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