Hello friends! I am so sorry it has been so long since I have posted but I just have not felt any inspiration all summer. Until yesterday.
It has been a very long and very hot summer. Jacob got laid off in November, and we both decided we were too young not to pursue our goals, so he enrolled in school(which by the way-he has made all A's this summer semester) to hopefully have a better career one day to better provide for our little family of three. A few days after that I found out I was pregnant. I am 100% positive most people think we are absolutely crazy for continuing to pursue this dream, and maybe some days we think we are too. But with great sacrifice comes great reward, or so I have been told...which that little statement reminds me once again that I am 33 weeks pregnant now. What a sacrifice it is, especially in these hot summer months.
This pregnancy has been an absolute dream in some ways compared to my first with Emersyn. When I was pregnant with her, it was complication after complication, and very stressful. The morning sickness, the short cervix, the gestational diabetes, the preterm labor, the IUGR, and her going into distress during said labor. Not to mention all the craziness that happened after she arrived. This time around I did have some seriously intense morning sickness, where I was prescribed medicine to take but during the thick of it, NOTHING helped. However, no short cervix, and no gestational diabetes. Which sort of makes me wonder-since a doctor told me that they really have no idea what a normal pregnancy looks like for me because sometimes when a mommy is pregnant with a baby that has a chromosome abnormality it can throw her pregnancy off. Well so far that seems to be the case. The craziest thing that has happened lately is just the 9 cavities all that sickness has caused me. Like I said-great sacrifice(my teeth) and great reward(handsome little baby boy!).
Now this is one of those moments that you think-God knows whats up. Because I really don't know if I could mentally trudge through all the craziness lately if I couldn't have that milkshake, cookie, or chocolate, or french fries, and well the list of carb rewards goes on and on.
You're probably thinking-its probably because she's pregnant with a toddler and her husband is going back to school is why she feels the need to reward herself with bad food that makes her teeth rot further, and get in trouble at the doctor for gaining 8 pounds in two weeks, and that is partially true. But the big reason is, the last couple of months, for lack of better words and bear with me here, Down syndrome has been kicking my waddling butt.
When you are a mommy or daddy to a child with Down syndrome, you have to have a balance of drive, optimism, and positivity with acceptance, and realistic expectations. Its a VERY fine line. They both can make you lose your mind when you have bad days. Too far into the optimistic world and doctors and people look at you like you are crazy, so end up thinking to yourself "Am I crazy?" Too far into the world of acceptance and you start to feel like you aren't trying hard enough for your kid and are being a complacent mother.
Which brings me to this speech dilemma. Emersyn's speech has made zero progress in the last year. However, her oral muscle tone HAS improved so much, and her signing, comprehension, and communication has improved 100%. So-what is holding her back? It can't be her hearing because she dances when she hears music...but what if it is? Its very common in kids with DS to need tubes in their ears, so just to leave no stone unturned I had her hearing tested. Low and behold, both ears failed. We did a different test, and her right ear failed again. So, we made a trip to her PCP and got a referral to an ENT. It took two weeks for them to get with me and schedule an appointment that I had no control over when it was-which was a month away. I was a little devastated because in all my nesting-most of it involved getting Emersyn's health and development sorted out before little brother gets here-not the normal cleaning, organizing, and decorating that most mothers go through. To add to the drama of it, when I went to see about starting back up with the new speech therapist at the hospital, I found out insurance will not cover it if she has failed hearing tests-because if she can't hear, she can't talk.
During all these battles, I was also trying to find a dentist who would accept the only insurance option we have during this crazy-sacrificial-hurry-up-and-end-so-we-can-feel-like-we-made-the-right-choice time. The most recommended place told me they didn't, and when I asked for a recommendation for another, the receptionist said to call back in a month, that they might accept it then. So I did-and this different receptionist was taken aback that I would even call there, and that someone would even tell me they might accept that insurance. You could say she was my "favorite" person, especially with these hot, third trimester, momma bear pregnancy hormones surging through me. I did finally find a place-and Emersyn has an appointment during my 34th week of pregnancy.
Just to be clear you are all with me on how my mind is working-the closer we get to 35 weeks the more nervous I am about not getting everything taken care of. Because that is when I went into labor with Emersyn.
To add to the obstacles, we make a 45 min trek to physical therapy every two weeks-and insurance is now starting to say if you don't use the amount of therapies we give you in this certain allotted time, we will no longer provide that many visits in the future. They decide that now in my third trimester in August. When I am going to the dentist every other week, and the OB every other week, and trying to get her hearing sorted out. All at least 45 minutes away. Which of course turns into an all day ordeal with a toddler. Planning around meals and nap times is MADNESS. Adding in the fact that I normally need to pee every 20 minutes-yes, you guessed it, I am withholding fluids against my better judgement because there is no way to reach a bathroom sometimes. Current Mantra:I can do this. I can do this. I can do this.
Which brings me to yesterday. The day my "team" got obliterated.
The day we go to the ENT for some answers and action had finally come. We loaded up at 9:30 for our 1:00 appointment and headed out. We had a few drive through pit stops on the way there-and that put us arriving at the doctor just at 1. We go back to a little room where the audiologist looks in Emersyn's ears and sees wax, she leaves to ask the doctor if he wants to clean them out before she takes the test but he is with a patient and says to go ahead. During the test, it is abundantly clear that Emersyn is not hearing everything she should be. She takes a different test, and it is abundantly clear that she failed it as well. There is no vibration coming from her eardrum on the right side, and barely any on the left. She takes us back up front to the waiting area. We get called back again, and go into a different room, where we wait a while, then a PA comes in and examines Emersyn's ears, nose, and throat. Says she does have some wax and fluid in her tiny tiny ears, and makes mention of something I have never heard of and cant even explain about her throat, and she isn't sure if her palate is low toned. She leaves. The Doctor comes in, and examines her and repeats all the same things the PA said. Then he asks why we are there. We explain her lack of speech led to suspicion, which led to failed tests and TADA now we are here. He says he doesn't really want to do tubes because her ears are so small, and because of her heart defect he isn't sure about putting her to sleep. He asks when the last time we saw cardio was and what she says about anesthesia. We had never discussed it because we had no reason to until now. He also suggests a dentist because Emersyn's teeth look so bad. Then he says lets follow up in a month with another hearing test, and we will clean her ears out then, and until then, put mineral oil drops in her ears every couple of days. Jacob and I were so exhausted and overwhelmed-we just agreed thinking it was a good plan. I made an appointment with him for when I will be 38 WEEKS PREGNANT. Then we drove home.
NUTSHELL:
We were in the car for 6 hours.
We were at his office for 3 hours.
She has failed 4 hearing tests at this point.
She has 1 word: Dad.
She will be 3 in October.
I am due in 6 weeks.
We had 0 interventions made to improve her hearing.
Yesterday, I was influenced to be in the world of being realistic.
Current thought process:
Does the fact that we have the lowly crappy insurance have anything to do with the fact that we were pushed aside?
If she were a "typical" kid with only one word, would there be more urgency to have an intervention?
Who is to say she wouldn't have more words, should there be an intervention done?I have seen her development change from night to day when she started her thyroid medicine(that I had to fight for) -So i know it is possible.
Is it because she has Down syndrome and people just assume-she is gonna be delayed, so who really cares how fast we move this process along?
So guess what? Today-despite having my team run ruled in the first game of this double header-I am putting on my gear, armor if you will, and I'm gonna go back out there and play as hard as I can. I'm going to call the doctor and advocate for my girl. I will do everything I can to speed this process along to some intervention-even if it is just a good ear cleaning-every little bit helps, because I know if NOTHING is done-then we aren't helping Emersyn hear, or have better speech. AND THAT IS NOT GOOD ENOUGH.
Today, I choose the world of optimism and drive.
You know why? Because even though I was emotional and exhausted-my two year old daughter has still been smiling, dancing, loving, well-behaved, and just an excellent little girl through it all. She deserves the sun, moon, and stars. And God picked me for her momma and I will do everything in my power to do that for her.
Thanks for listening friends. If you want to drop off some cookies I promise I will enjoy them. But I wont promise that after the 420+ miles, 12 hours in the car, 4 fast food meals, 1 therapy session, 1 blood draw on my girl, 1 OB appt, two doctor appointments for my girl, and 102 degree weather that I will have pants on. So consider that a warning !
Sending love to all Emersyn's friends, fans, family, and supporters. You are all so appreciated.
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