Last week we had to take Emma to the Craniofacial Clinic. Its a Clinic that happens every 3 months, its for all children who are born with Craniofacial deformitites. I think I talked about this clinic before but if not basically you are assigned to a room in the ENT office and about 6 doctors stop in and check your child out.
The doctors Emma sees during this visit are:
Ear Nose & Throat Department
Plastics (Plastic Surgeon)
I think that is all of them (I could be leaving out 1 more)
This is Emma waiting for them to call her name…
Did you say Emma????
Guess I will take a few good shots for Mommy…
(show those teeth boo)
So before they called her of course I did a photoshoot in the lobby because that’s what Mommy’s do right?!?!
So they finally called her and the first on the list was her visit with the Audiologist! She checked Emma’s hearing and we passed with flying colors! Her tubes need to be taken out and cleaned but that is not stopping her from hearing or causing any hearing problems.
We then had a visit with her plastic surgeon…he said he knows she is on the list for a January surgery but he wasn’t sure if he is going to repair her scar from her lip (didn’t heal correctly) or if he needs to do a surgery to help her speech. So he wants us to go see the Speech Pathologist to see what they say about her speech development (we go Friday).
Then we had visits from the ENT Doctor and the Dentist…no biggie just gave us a few tips and left!
Then the Genetics lady came in (I cant stand this lady…talk about a Negative Nancy)!!! So Emma is a little behind on her development, she hits her milestones but its a little slower than the average kid. But this is understandable because being put under anesthesia at a young age can cause this to happen. But genetics believe that if they do the test on her chromosomes that they can tell us why she is developing a little slower. Well in children with Clefts (yes, Im no doctor) but research has shown that children with clefts and being put under anesthesia can cause delays. So we basically told her no we don’t want any testing and we aren’t having any in the future unless there is a problem they notice and we are clearly looking for something!
So she left and the Pediatrician comes in with an intern. She comes in the room saying that another mom told her that she hates when she comes in the office because she is always trying to run another test and have her worked up! I said well I agree with her…you all are always trying to do something. So she goes on telling the intern the background of Emma. So Darrick and I are sitting there quietly listening so she goes into telling us that we need to do a brain scan on Emma (she will have to be put to sleep to do this) then we need to do a genetics test (blood work).
Out of no where the Mommy Bear in me come out and I go off! I asked her does she think something is wrong, and if so what are you looking for. I said DON’T SUGAR COAT ANYTHING give it to me STRAIGHT (my exact words). I think she could tell I was about to light into her…
She started stumbling…I don’t think anything is wrong with Emma! I have see so much growth in her from the work you all are doing in therapy and at home with her…just in the last month she seems like she is a new child. So I come back with…then why do you need to do all this testing. She claims its because of the delays and she wants to make sure her chromosomes are all correct. She said I don’t see anything in her that would make me think they aren’t but its good to do testing.
Sidebar: When I was pregnant and we found out Emma was going to be born with a Cleft Lip we were requested to do an Amniocentesis Test. Basically a test that puts you at a high risk of miscarriage but it checks out the babies chromosomes. The results of that test NEGATIVE nothing was wrong and all chromosomes are normal (Praise God)!
Now all of a sudden we want to check to see if its something going on with them…to my knowledge (I have NO MEDICAL background) I didn’t think chromosomes just randomly change?!?!
So basically you want to do testing but cant give us a clear reason why?? NOPE not doing it!
Now we are all for testing if there is a reason WHY! But Emma is no one guinea pig…she will not participate in random testing! We go to a research based hospital…but we will not participate so you can use her results for an article or presentation…NOPE NOT MY CHILD!
I think interrupted the doctor and explained back to her what she explained to me and more! I felt bad the way it came out because you could clearly tell I was mad and emotional (you know me…crying) but I got my point across! I told her every-time she sees Emma she wants to do more testing, I said you NEVER come in here and say oh she is doing this now, or oh we know she has some delays and that’s probably due to her having to play catch up with the children who haven’t had 3 surgeries before the age of 2!
Its always we need to test to see if your future kids will be born with a Cleft or if Emma will have delays in the future. I said if you do testing and find she will have delays in the future what will you do now…(silence)! Exactly…no we aren’t doing testing for no reason, I went on to tell her that God blessed us with Emma for a reason. There is no cleft on ANY side of the family, so yes it just happened! If God wants us to have more special need children then he will give us everything we need to handle it just like Emma.
I just couldn’t take it anymore! I gave her everything I have been feeling for the last 20 months! You will not test for no reason. If you think something is wrong, lets start testing now…but if you cannot give me a solid reason as to why we are running test its a no go! And Emma is hitting her milestones, its taking her a little bit of time but she is getting there. The stuff they want Emma to know stuff that a child with no problems probably doesn’t know. It just baffles me…I wonder if all those parents at the clinic went through this or have gone through this.
Sidebar: Crazy thing is I asked the Moms of the Cleft Mommy Group I am in and sadly they all have gone through this at one point or another.
But I do know one thing…that is the last time her doctor will come in the room talking about ANY kind of test without a solid reason/explanation.
Honestly, I have been frustrated about this for a while (you can understand why) I just feel that they want her to be advanced and know this and know that but we are constantly trying to put her under anesthesia for a test! Every time we get on a role in learning or hitting milestones we have surgery and we have to play catch up…the reason she is where she is now is because of the resources we have been utilizing at home and therapy so we are working to get her there but some stuff isn’t going to happen until Emma is ready!
Its crazy…sorry for the rambling but I just had to put it all out there!