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Friday, October 14, 2016

120+ Visits to Date and We Have A lot to Celebrate!!!

Howdy ya'll! I really don't get a chance to blog regularly anymore with 2 tiny humans to chase after on a regular basis, however when a blog topic starts swirling around in my head I have to write about it or it just haunts me haha. 

I was talking to a friend the other day, and realized it has almost been an ENTIRE YEAR since we started down this lip/tongue tie journey with Noah, and I just can't believe how fast the time has gone by. I also can NOT believe how drastically our lives have changed... not just with the baby, but with NOAH. I know a year makes an enormous difference in the life of a toddler, but his entire life has gotten better and I just can't wait to tell you about all the progress he has made. Below is a picture of my two little ones, and they are just super awesome!!! This is from July 4th which is a while ago, but it's one of the few pictures they are both looking directly at me AND smiling! If you want to start from the beginning of our lip/tongue tie journey go back to this blog and start here: http://www.blackplateclub.com/2015/10/even-doctors-make-mistakes-our-2-yr.html

Oh the Hours: So what have we been up to for the past year with Noah bear? Doctor visits, and therapy, doctor visits, and therapy, doctor visits, and THERAPY THERAPY THERAPY!!!!! That is where we live... sigh. When I prayed for answers, man I had no clue it would lead us to the places we have been, BUT I'm grateful because we are finally moving forward. To specify, I counted today that we have been to 120+ doctor and therapy visits over the past year. 120!!!!!!!!!!!!!!!!!!!!!!!!!!!!! All of those were done pregnant, or with a newborn in tow, and ya'll I'm TIRED. If you're curious to know how I figured that out, or you can't flat out believe it, I calculated that we have been to 2-3 doctor/therapy visits/week since exactly one year ago. Also that number is fairly conservative, since I didn't count in sick visits, well-check-ups, or all of his allergy testing. But I would do all over again, seeing how much my sweet baby boy is progressing and getting back to his joyful little self. 

So What Exactly Are We Doing With All That Time? Well, previously we were in speech therapy twice a week, then we added occupational therapy, but I realized I couldn't handle 3 therapy visits a week with the baby, so we dropped down to speech and OT once per week. Ideally both therapists would love for me to take him twice a week to both, but I can't even fathom 4 therapy visits a week. It's Julia that I feel bad for, and I'm not sure mentally I can handle any more. We actually finally got both of his therapies on one day (WAHOO), and now we just make a day out of it. Side note: Speech therapy is much more beneficial if you do occupational therapy directly before it, took a while to get this coordinated, but it REALLY makes a huge difference. We're all exhausted on Wednesdays, but it's ok. 
Speech update: Praise report! In speech he actually tested within the normal ranges for language, yippee!!! However he still tested below for chewing/swallowing, and speech. For chewing/swallowing we work on trying new textures, developing his jaw muscles, preventing choking/gagging, lateralizing food in his mouth, and decreasing pocketing of foods. For speech we work on confidence in speaking, finishing words, pronouncing beginning - middle - ends of words, basically speech intelligibility. Also we are working a lot lately on accessing the words he has, and developing normal communication skills. 
Occupational therapy update: OT is significantly more enjoyable than speech for Noah, however it is definitely a WORK OUT! Noah is a 'sensory seeker' so he LOVES, crashing, running, jumping, climbing, moving all the time, heavy objects, and loud noises. In OT they put weights on his body (4-11 pounds - which is ALOT considering he's only 32 pounds) and then he does a rock wall 7 times, pulls the OT student in a wagon around the office, does an obstacle course, balance beam, they work on fine motor skills... lots of stuff! They also do cranial sacral work, and most days he really loves to go to OT. He has made huge amounts of progress here too, but still is being in some stuff, so will be here indefinitely as well. 

Angels in Disguise: I have to give a shout-out to Noah's speech, & occupational therapists. THEY ARE THE BOMB!!!! Actually more accurately they are an answer to prayer. God hand delivered these two angels to us, and they are my heroes. When we started therapy, man Noah was FRUSTRATED, he was mad, and frustrated, and frustrated, and mad. He couldn't communicate, and he took it out on the world. These two women moved towards him when they could have moved away... and I don't have words for how grateful my heart is that they decided to get into pediatrics all those years ago.  They have blessed our lives immeasurably, and I can never thank them enough. It took a little longer to find the right OT, but now that we have a team MAN are they working miracles. I just friggin' love them, and can't say enough amazing things about them. If you live in Katy, I'd be happy to give you their info. if you're interested. 

On to the main reason why I wanted to write this blog today. I wanted to spread Noah's GOOD NEWS!!!! Below is a list of the main changes that have happened over the past year that I attribute 100% to my tough little guys' hard work, a lot of time invested in therapy and working at home, and a lot of God-given grace. 
  • He is EATING AGAIN! Wahooooo!!!!!!! Feeding therapy sucks... it just sucks... but it WORKS! I plan to write a blog about an amazing book that has been instrumental in his success. "Food Chaining" is amazing... if you haven't read it, read it, and we can talk about it when I blog about it in the future. 
  • The kid can TALK, talk talk talk talk TALK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! His speech isn't perfect, but ya'll we can have actual conversations. Can I just state how much easier it is to communicate when you can actually use words. All you parents who have kids that talk your ears off, you may be tired of their questions but EMBRACE it! You don't know what's it's like to never hear your kid express their heart, or tell you their feelings, or say I love you, until they can't. Listen to their heart, and be grateful you get to hear their voice. Noah talks my ear off all the time (even though his speech still needs work), but I love having conversations with him. He could barely put 2 words together a year ago, and now he talks in paragraphs... it's a beautiful beautiful thing. Thinking about his progress here specifically makes my mommy heart just a big sappy sobbing mess.  
  • He no longer runs into walls... laugh all you want, but his balance was TERRIBLE!!!! and side note, it made me really sad to him get hurt all the time. Now it's AWESOME-sauce, and he doesn't run into anything unless he wants too. YAY!
  • His transitions with EVERYTHING are a million times better!!!!
  • He's less aggressive all around with everyone. 
  • He plays in groups again and is excited to see his friends. 
  • He is day potty-trained (something I'm certain would have never happened when it did otherwise.)
  • He loves spending time with family. 
  • He loves NEW adventures, and can adjust (eventually) to new environments. 
  • He brushes his teeth. 
  • Most importantly, He has gotten his JOY back!!!!
Final Thoughts: The truth is some days are hard still, really hard, but I attribute much of it now to being a threenager. He will still be in speech and OT indefinitely, but I don't even care. At this point, I would give up absolutely anything to help him, and I'm so grateful to see our plan has been working. Some days are better than others, and somethings are still huge challenges (like trying to play on a soccer team). HOWEVER, we have many many more good days than bad, and for that I'm just so unbelievably grateful. 

Speaking of gratitude, I'm grateful we FINALLY found people who could help us, I'm grateful I'm over being mad at all the people who couldn't, I'm grateful for our therapists, my precious husband, and family/friends who have walked along side us and loved us through this season. It just tears my heart apart to see kids improperly diagnosed with all sorts of crazy things, because someone over looked a lip/tongue tie. Gosh, it's just not necessary!  Of course some ties never cause the issues my son has, but the kids who have the same severity ties as my kiddos and are suffering down the same road we were on, my heart just aches for them. And THEY are the reason why I have this blog!! I just want to be an advocate, cheerleader, and most of all give hope! Hope that things get better. If you ever need someone to talk to about this, I'm always happy to chat and you can find me on Facebook.  To God be the glory, and good luck to all of you!!

Love and Blessings,
The Veggie Momma 

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