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Thursday, January 4, 2018

Our 2 and 4 year olds lip/tongue tie update!

PHEW! it has been a while since I have blogged, over a YEAR! One of the main reasons of course is the fact that I run after 2 toddlers all day, and man it's exhausting haha. The other reason is... I needed a break ya'll. A break from worrying about all the kids who could have ties, and if they are getting the help they may need or not. Also, I think it was consuming my life a little bit, so I'm grateful for the break! Lately I feel like I have some awesome progress to update, so it seemed like a good time to get back in the saddle. Also I have quite a few people inquire about our revision journey with an older kid, hopefully this update is helpful! Let's start with Noah:

Noah bear my heart:

Speech therapy update: We are still in therapy twice weekly.... again... indefinitely. One of the biggest revelations we have had is that he might have some issues with his soft palate. Ties are considered a mid-line defect, and it wouldn't be surprising to find some sort of hard or soft palate abnormality present in kids who have ties. Our regular speech pathologist was concerned he was having nasal emissions and wanted to rule out any issues that could be causing it. So we added more doctor visits and testing to our already busy life, but it was worth it. The good news is his hearing is perfect! The not so great news is that he might have soft palate abnormalities, and that most likely means more therapy than we had initially expected. When speaking with the speech pathologist who specializes in cleft palates, she concluded that because therapy is working we may never even need to be considered for surgery though, so yippee for that !
Feeding therapy update: We finally graduated from feeding therapy, WAHOO!!!!!! He eats almost everything now.... I can't even believe those words when I read them. It's a miracle, feeding therapy was definitely the hardest part, but MAN has it been worth it. We can go to restaurants and he EATS, I put food in front of him and he EATS, he even finishes his plate most days for dinner. He is skeptical with new foods at times (especially if we are not at home), but it usually only takes a hand full of times to be exposed to it, and then he tries it! This is an AMAZING stress off of our family, more than I can adequately put into words. Take a gander at the pictures below, this is him helping me cook, one of his favorite things to do. It took 4.5 years but ya'll this kid ate CHICKEN! Not chicken nuggets, CHICKEN! Roasted chicken... I think I almost cried haha.

Occupational Therapy: We are still going strong in weekly occupational therapy! He definitely still has Sensory Issues, and transitions are incredibly difficult for him, but he is doing GREAT in this area! He has learned to regulate quite a few of his impulses, and doesn't fight us nearly as much in all areas of his life. I can honestly say he is the happiest he has been since he was a 18 months old because he has control of his body. He can ride a bike (with training wheels), play with other kids, keep up with big kids, do chores, keep up with his dad, and his body does everything he wants it to. He has come a LONG way from the kid whose fine/ gross motor skills were so far behind, he was daily frustrated he was stuck in a body that didn't work properly for him. Right now he communicates and functions almost like every other 4 year old, wahoo!

School: speaking of functioning in public, pre-school is going GREAT! He is the youngest in his grade (goes twice a week), but FINALLY after tons and tons of occupational therapy, can sit (relatively) STILL! He is LOVING learning for the first time in his life, because he can actually concentrate! I sent him into his room during rest time one day to complete some writing homework, and he came out with the entire thing FINISHED! This has been an enormous milestone this year, and month by month it just keeps getting better. His teachers are astonished by his growth, and praise him almost weekly for it. He also can do addition on his hands! I'm just so proud that he can function in a school setting, and now actually look FORWARD to it! He is still developmentally a little behind in other areas, so to give him some more time to do therapy, and catch up we are enrolling him into a transition program next year. He is an August birthday, and we are confident this is the best thing for him.

We Now KNOW Noah: I'm so grateful I finally know who my son is, and we get to parent him almost just like everyone else. Also I LOVE to hear every single thing that is in his little heart and mind. He has the most VIBRANT personality, and is no where NEAR the shy kid I had mistaken him to be. He wants to be friends with EVERYONE, and is such a sweet boy. When Jamey and I talk about how far he has come, it makes every single miserable second of therapy at the beginning worth it. And when he has bad days now, those are worth it too, and they are no where near what they were. I'm unbelievably grateful the Lord has sustained me over the past 2.5 years, it has been hard, but it has been worth it. I truly could not have done it with the support of my family, friends, and his ANGEL therapists!!

Sweet Julia's update: she is awesome. She is so much more amazing than I could have ever imagined a daughter could be. As far as her ties go, you would NEVER  in a million years know that she had a level 4 lip tie, and a level 2 anterior tongue tie. She is off the charts developmentally, and has been talking and eating like a champ her whole life. She has normal 2 year old food funks, but it's never something we can't work through. People don't believe me, but she has been talking in paragraphs to me since she was 18 months old. She started talking at 10 months, and has not stopped since. Seeing what normal language development looks through her has been incredibly eye-opening. She tells me all the things she thinks, she asks me a million questions, she asks me if I am ok, and tells me her fears. I'm so unbelievably grateful for the gift of communication I have with her, but at times it makes me so sad to think back about Noah and all the things I know he wanted to say to me, but couldn't. I don't linger on those thoughts, but it's hard not to compare experiences. I'm grateful for the sacrifice her brother made by enduring years of fighting for answers for ties, and that she is set up for success! Despite our nursing relationship still not living up to my expectations, getting her revised at 3 days old, was a tough decision, but there is not a day that goes by that she doesn't confirm it was the right one. Everyone wants to attribute her development to being the second child, and a girl, but I don't agree. Her ties were equally as severe as Noah's, and she would have had at least some of his struggles had she not been revised... currently she has none. I'm truly grateful.

Revise or Not to Revise?: that's the question right? Just because I haven't been blogging about ties as much, doesn't mean I don't still have many conversations with people who are considering a revision for their little one. To date, the most frequently asked question I get is "do you think my child NEEDS the revision?" My honest answer is always, "I don't know, do your research, and pray about it!" The procedure itself doesn't fix everything, especially if you have an older child. You need to be committed to therapy, whether out of pocket for private therapy, or looking for assistance from a school district. You need a village, patience, and heaping doses of grace for your little one. The good news is, a proper revision, and adequate therapy can HELP! Ties are a functional problem, and even though they can contribute to sensory issues, and developmental  delays, they CAN be addressed with therapy. I always recommend no matter what you do make sure you have peace about it, and find someone who can be your support system. For us, it was  the right decision, both times.  PLEASE educate yourself about them though, and be VERY fervent in finding a provider who KNOWS they know they are an expert on ties. If you ever have any questions I'm always open to chat! Facebook has the 'Tongue Tied Babies Support Group,' that might also be a good place to start.

If you have an older kid that you suspect has a tie, or you yourself have one and are on the fence about a revision, I'm going to share my revision experience in a blog post soon. Hopefully it will help you, and them make a decision about it for the future.

Love, blessings, and HAPPY NEW YEAR to you and yours! CHEERS!!
The Veggie Momma

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