My job, as is any parent's job, is to be an advocate for my child.
Especially when your child is young and can't express things on their own.
*Please see my previous post here
before reading this one as it will make this post easier to follow!*
In light of my previous post and the issues that Cooper had a little over a year ago, we went in to see his pediatrician again because he refuses to eat anything of substance and still has his loud breathing (stridor and Lyrangomalatia), and he has lost weight.
Cooper will hardly eat anything.
He eats graham crackers, peanut butter toast, waffles, some fruits (sweet ones) my smoothies as long as it is in my cup, and anything with sugar in it.
He WILL NOT eat
any meats, cheeses, noodles, beans, soft breads, veggies,
and he is sensitive to milk due to his GI issues so we stay away from that.
So basically that means he eats nothing.
It is a struggle to get him to eat anything so we were relying on special hypoalergenic fully broken down formula (Thank you Cooper's GI track, we appreciate that)
we were loading up extra calories in that so he would "gain" weight but he has since decided to not want to drink his bottles as much.
At Coopers 9 month check up he was 16.1 lbs and the 3% for his weight.
He has now nearly doubled his age ( 2 weeks and he will be a year and a half) but he has only gained 3 lbs. He is now off the charts for weight percentile.
I have been taking cooper in and stressing to the doctor at each visit that he will not eat anything.
Each time he told me, "babies aren't all the same, I will start worrying about him not eating variety at the next appointment" every single appointment.
This last appointment I had had it.
I called and made one specifically for his weight loss issues.
The doctor finally became concerned because he actually lost half a lb in a month.
So now we will see all the specialists again.
Awesome.
Because I haven't been saying this for the past 8 months.
And of course our 100% coverage insurance from the 6 month post-deployment period is now over.
Thanks.
Appreciate you listening to me now Doc.
You would think he would take me a little more serious after the last time.
(I'm not completely bashing this Doctor by the way. He is a great doctor. He could probably just benefit from listening to patients who have proven they know when something is wrong)
Anyway, we will be seeing the GI doctor we saw after Cooper's surgery, The Ear Nose and Throat doctor who performed the surgery for the Lyrangomalatia, and seeing a speech therapist for the feeding issues.
When we were cleared from the ENT doctor 6 months after Cooper's surgery, he told us that as babies get active the stridor will become louder again, but if it doesn't subside by 18 months, he wanted us to come back in to potentially do more surgery. Since Cooper's has not gotten any better from his post surgery "normal" it is perfect timing that we are seeing him now to make sure everything is ok.
We saw the ENT doctor on monday and we have good news and bad news.
After sitting with him and talking, and him actually listening ,
(it's really funny how this time he treated me like I knew what was going on and listened, unlike last time)
He originally thought he was going to have to do another scope and see what was going on
But based on what I told him, he thinks a better approach would be to get a barium swallow study to see if/how he is aspirating when he is drinking or eating, and a neck X-ray.
He is more interested in seeing if his breathing may be due to enlarged adenoids.
However he doubts they are so large that they would be causing feeding issues.
He wants to get the results of those ASAP and meet back with us to see what the next step will be.
So good news is that as of now, we don't have any surgery planned with ENT.
Bad news is, we aren't any closer to finding out why Cooper is losing weight and he isn't eating.
Luckily we have the appointment with GI next week so we will hopefully have more answers then!
Unfortunately as of now we have to wait until September 8th to get the speech therapy eval.
This kid will truly drive me to the grave or to getting grey hairs before I'm 30.
Thanks Cooper.
I was hoping to hold onto something since you already took my 20-something body ;)
All jokes aside,
This kid is the best kid I have ever met and we will figure out what is going on and we will keep everyone updated!
Until then, enjoy some pictures :)
No comments:
Post a Comment