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

Eat the Rainbow - presentation for Noah's preschool

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 

Julia's Newborn Lip & Tongue Tie Revision Journey

Howdy all! I have been wanting to post an update on Julia for sometime, and am grateful with this holiday weekend I finally found the time to sit down and write. Most of the time I talk about Noah's story, and the side effects of late tie revision. Fortunately for Julia, Noah's struggles have been an indirect gift to her. We knew immediately after her birth that we were not going to wait one day longer than we had to for revisions of her ties. I wasn't thrilled about the idea of putting my newborn through any kind of pain, but I also knew that I couldn't bear to see her suffer from all the things that Noah has had to as a child. For a full recap on her birth story, newborn revision, and the first few weeks post revision go to this blog article. 

http://www.blackplateclub.com/2015/12/bittersweet-progress-noah-and-julia.html

Going back and reading that blog made me empathize with my frustrated postpartum self, but it also gave me amazing perspective. Look at this sweet baby girl... just look at her. 

The Bitter Sweet Reality: SO much has changed since she was 2 weeks old. The honest truth is that we made it longer with breast feeding than we ever did with Noah, but didn't make it to my dreamy goal of at minimum a year. Currently she is almost 9 months old and is exclusively formula fed, and I'm going to chronicle a few of the main events that happened that got us to this point. 

Silent Reflux What???: As mentioned in my previous blog, even post revision, Julia nursed for a VERY VERY VERY long time. Each session was 1-1.5 hours long...oh my goodness it was absolutely EXHAUSTING!! I could easily identify that Noah had reflux because he lived in a bib, and spit up everything all day every day, but I had absolutely no idea what was going on with her. I mentioned to a friend that we were having issues (she has a baby with ties as well) and she explained the silent reflux problem. Apparently even though the ties are released, the baby still does not know how to use their tongue properly right away, and a significant number of babies with ties also have high palates. These issues lead to reflux problems, which totally wear the baby out when they try to eat. When a baby has a tough time nursing due to reflux they have to choose between sucking or breathing, so when they get worn out they just choose to breathe... and then sleep. I was very hesitant to put her on a medication so young, but  we went to our Pedi who was willing to give it a try after doing an extensive elimination diet that showed no progress. According to one Pedi ENT, infant Prevacid works a million times better for reflux than all the other meds, so that's what we tried. Within 4 days her nursing sessions went from HOURS long to 30-45 minutes MAX. I was extremely encouraged and felt like this was the answer we were looking for. 

Mastitis Woes: I definitely enjoyed the months I nursed Julia a million times more than Noah however not all was easy breezy. I ended up with mild to moderate mastitis on 5 occasions and needed antibiotics from my OB 3 different times. Basically in the span of 3 months solid I was only off of antibiotics for a week or two and then was right back on them. At that point I felt... defeated. I was doing everything right, but her mouth and my body still could not figure it out. I tried every single latch technique out there, watched countless you-tube videos, saw a pedi chiropractor regularly, but still couldn't make the fairy tale dream of our nursing relationship come true. So I slowly started weaning after 6 months when she started solids, and as of today she is on formula and food. 

Acceptance: I have fully accepted that my breast feeding dreams with my kids were more of a night mare than a dream. However, I'm extremely grateful for being able to enjoy it more with Julia than I ever could with Noah. I treasure the time I had with her when it all 'worked', and now that she is eating food, I really have peace about the formula stuff. I hope if you're struggling with this decision that you give yourself GRACE, and permission to do what is best for your baby, you, and your family. And PLEASE above all things, do not give in to the mommy guilt. If you have had babies with severe ties you have experienced parenthood with newborns in a totally different way than other parents, and need to always give your self an extra heaping amount of grace. 

The GREAT NEWS! Ya'll beyond breast feeding, every other single thing with this little girl has been unbelievably easier than with Noah. Her transition to foods was seamless. She eats EVERYTHING!!!! We did a loose version of baby lead weaning, because she was very eager to eat, and eat REAL food! 

A few things I have noticed have been a million times easier for her than Noah were: 

- She obviously has full use of her tongue and moves food around in her mouth with ease

- She can clear food off of a spoon easier

- She can manipulate food with her hands easier 

- She never gags, stuffs, pockets, or spits food out

- She pretty much loves everything I put in front of her

- She is baby talking up a storm 

- All of her developmental milestones are unbelievably earlier (which I know is in part due to being a second child and a girl), however it just makes me so very happy to see her not struggle like he did. 
- She has absolutely zero fear of food, it's a beautiful beautiful thing

Take a look at her happy little self below. She doesn't take pacifiers so she chews on none other than veggies of course! Celery and carrots are her favorite... don't worry she can't get any chunks off yet. 

No Regrets: As previously stated, even though this journey did not end in my dream scenario, we are still a very happy and thriving family. I have learned SO MUCH through this tie process, and I honestly do not regret even for a moment having her ties fixed even though we had to transition to formula sooner than I had hoped. Life just seems easier for her on all fronts, and I believe in my heart it is because she is not dealing with the side effects of unrevised ties.  Above all things, I'm thankful the Lord has given me peace about every decision we have had to made for our precious baby girl, and that He has brought me closer to him in this journey, and made me rely on Him more.

If you have a kiddo that has severe ties and your life is tough right now my heart breaks for you, but know you are not alone. We can absolutely still raise healthy kiddos even WITH tie issues, and find  a way to educate as many people as possible in the process. 

Hope you all have an awesome 4 day work week!!!

Love & Blessings, 

The Veggie Momma 

Fighting Misconceptions, and New Revelations

Happy New Year (a quarter of the year in hah)! I haven't posted since December because... well... with two littles so close together my hands are FULL!! Also, honestly I have started this post at least 10 times and just can't seem to get my thoughts put together... so here I go giving it a try.

Just a fad?? First of all, I want to address a notion which has been floating around the internet that lip/tongue ties are just a 'trend', and are not a 'big deal'. Some people are claiming this all started when pediatric dentists and ENTs decided to diagnose every child they run into with a tie, and that ultimately that are aiming to make a profit by attempting to perform surgery on any child whose parents are willing to give surgery a try... um, that's LUDICROUS!!!  For a full rebuttal from one of the most well-known specialists on the topic, read the blog post below from Dr. Ghaheri. Actually if you want to learn everything you could possibly want to know about ties, spend some time on his FB page. This man has tirelessly gone to bat for parents like my husband and I, and I'm so grateful for his heart to vouch for us and help so many kiddos!!

https://www.facebook.com/DrGhaheriMD/posts/559686987526015

Clarification: Yes, on the spectrum of ties there are kiddos that if on the mild end, do not ever experience complications. I hope and pray that most kids fall on that end. However, my child was not one of them. Later in this post you will see where we are now, but suffice it to say things still haven't gotten significantly easier. Not to mention that I realized as of July we will have been to 100+ doctor/therapy appointments, all tie related, in a years time. OVER 100!!!!!!!!! I'm not bragging and I don't want anyone's sympathy, I am just mentally exhausted... and when my husband pointed this out I finally realized why. A third of those appointments were when I was pregnant, and the rest have been after I had Julia.  I've been toting a newborn around for every single one of her brother's appointments since she was 4 weeks old... If someone tells me that ties are just a trend, and kids 'grow out of them' I would like for them to come walk a week in my shoes. No, my son doesn't have a chronic disease process, but the side effects from his ties that weren't addressed early on have been significant. Our day in and day out is more complicated than the average normal toddler's life, and it's ok I wouldn't have it any other way... but when people undermine the struggle by questioning the impact this has, it's beyond frustrating. Also, there are mothers out there who have gone to battle with physicians over why their child can't eat, and are sitting in a hospital room right now with a child on a tube feeding because no one could identify they were simply suffering from very restrictive ties. Try and tell those mothers it's just a trend! Anyways, I digress... Thankfully that is not our situation, but the lack of education out there is just mind numbing, and it only adds to the frustration families who are dealing with these issues feel. Rant over.

A Revelation: Something else I find interesting is, that I started this blog to promote healthy families,  and chronicle what it's like to actually raise healthy children in the obesogenic society we live in. From Noah's birth, I have relentlessly tried to raise up a child who is healthy and loves to eat a variety of healthy foods including vegetables. My goals have been to help prevent obesity (which runs in my family), decrease the risk of chronic diseases, and promote a good quality of life for him. I realize now most of this blog has transitioned to being mainly about my kiddo's issues with their ties. However what I recently discovered is, this blog actually chronicles the struggles us families deal with when trying to parent a child with ties. It has been an interesting, and exhausting journey and I have literally tried every single thing I could imagine to help him. There are many days it would have definitely been easier to result to Pediasure exclusively, but I absolutely refused to let it happen that way. If you look back I was working around all sorts of issues with texture, food pocketing, stuffing, reflux, gagging, and overall food rejection that unknowingly was caused by ... STUPID ties. WOW, hindsight, sure is 20/20. Anyways, to get caught up on the lip/tongue tie journey without having to start from the beginning, go back to the October Archive & start here: http://www.blackplateclub.com/2015/10/even-doctors-make-mistakes-our-2-yr.html

A Must Read: Moving on, I've been reading a REALLY phenomenal book that our speech therapist gave us, and it has changed our life. This book is absolutely amazing. I plan to write a separate blog about some of the amazing tips they have for picky eaters, but I'll leave that for another time. This book was written by lots of very qualified people, and it is legit. It is very well written, easy to read, and just over all extremely informative and helpful. Definitely worth purchasing for most parents whether you have kiddos with ties or not.

Our Newest Discovery... Sensory Processing WHAT??? After reading through this book I stumbled across a  concept I had never heard of before. Anyone ever heard of 'Sensory Processing Disorder (SPD)'? Apparently it isn't a new concept, and most people even adults deal with sensory processing issues on some level actually, however in some individuals it is more pronounced. This is more present in kiddos with certain learning disabilities,  and yep you guessed it...ties. The good news is that this isn't something that will plague you for the rest of your life, but it can definitely impact how a person interacts with the world day to day. See the pictures below for a better explanation than I could ever give.

You may be thinking... hmmm the average 2 year old might have some of these issues in general on most days. However with kiddos who are truly dealing with SPD, it is a constant problem, and affects a significant amount of their daily functioning. 

Note the picture below. According to the book it is necessary that a baby master suck>swallow>breathe very soon in their little life. This is actually one of the first fundamental developmental milestones a baby must master if they are going to progress to other milestones appropriately. If suck>swallow>breathe is never conquered, then a negative developmental chain reaction could occur, see the 'end products'.  This is where the sensory processing issues are born.

Now when I read about SPD I started putting the puzzle pieces together and had an epiphany. Most people who meet Noah look at him, and see a fairly normal 2 year old. However, as a mother I was really starting to see some changes in his personality that I took note of. A few things out of the normal for him were the following: he was starting to have a hard time transitioning into any situation familiar or new, he was pulling away from his friends at times, he was very very frustrated especially since his speech was so delayed and his tantrums were long and frequent, at times he was incapable of calming down and getting emotionally grounded for hours, his speech therapist was also spending a lot of her time trying to work with him on things that weren't speech related to get him to a place where they could finally focus on speech. To quote frenectomytoday.wordpress.com "others might develope a speech impediment that could affect not only the normal development of their personality and self-esteem, but also their education and their whole life." This was my baby boy... he was beginning to slowly lose his joy, and the daily frustration was infiltrating every aspect of his life. Luckily when I discovered SPD, it appears I finally had an ANSWER!

I brought up this concept to our speech therapist (since she gave us the book) and she confirmed she believed he might be dealing with this on some level. So within a week we were in Occupational Therapy and started down a path to help him with suspected sensory processing issues. From how I understand it, I suspect this is the flow of how things got jumbled for Noah.

1.) Couldn't master suck>swallow>breathe for many months after birth. 

2.) Led to poor breast feeding, daily on-going reflux, poor weight gain, tough transition to formula bottle feeding, and ultimately early breast feeding weaning. He was also underweight for first 4 months of his life.

3.) On-going significant reflux, then poor transition to solids.

4.) Stuffing and pocketing even as a baby which led to under developed cheek muscles. I even have a blog post video that documented his 'stuffing' which is still a problem today!

5.) Choking/chewing swallowing problems from early on, and aversion to normal textured foods. 

6.) Significant language delay.
7.) On-going daily frustration with every task and strain on relationships.
8.) Eventually pulling away from friends, and groups of people. 
9.)Daily frustration with normal tasks, communication, and difficulty learning new things. 
10.)Difficulty focusing enough to benefit from weekly speech therapy. 

Which Leads Us to Today: After an evaluation and confirmation that he is significantly behind in many gross motor areas, he is currently in occupational therapy, and speech therapy twice weekly. The combination of the two have really been impactful, and thankfully the Lord provided 2 amazing therapists that Noah connects beautifully with. These 2 women are advocates for us, and are fighting to help him. I'm so unbelievably grateful for people who actually UNDERSTAND what is going on with him. Gosh, it felt like I was speaking a foreign language to so many people for so long... Thankfully we are finally on a path towards getting him the help he needs, and I'm very confident he will be caught up before he even starts kindergarten. Some days are better than others, but when we have good days and I can keep his sensory stuff at bay, his joyful sweet little personality overflows and we are all so happy. I'm very excited about his future also, and being able to tell him what a little fighter he was. I know the Lord couldn't have possibly let this all happen for no reason... 

If you have a kiddo who you think is suffering from a tie, please consider contacting Dr. Julie Martinez in the Woodlands. She is compassionate, patient, and will be your advocate. She won't talk you into anything, and will listen to your story and help you develop a plan that your family can live with. Here is her contact info. 

Dr. Julie Martinez

9006 Forest Crossing Dr, The Woodlands, TX 77381

(281) 367-6558

Hope this helps someone out there, and above all things the parents who are struggling with this issue know they aren't alone. 

P.S. I have great news about Julia's tie journey, which I will cover that in my next blog. 

Love and Blessings,
The Veggie Momma

Bittersweet Progress: A Noah AND Julia tongue tie update!

Well the biggest update I have from the last post is that our precious baby girl HAS ARRIVED!!!!!! She is 2 weeks old tomorrow,  and absolutely has been the most amazing addition to our family. She is 100% God's amazing goodness from her head to her toes. Noah loves her and though we are short on sleep, she is a sweet baby and we couldn't feel more blessed to have her in our lives. As suspected she was born with pretty much the exact same tongue tie issues as Noah, and that has been a journey in itself. I'll update on our little guy first, then fill you in on what has been going on with her thus far. To catch up on this whole story go to the October archive, and start with this blog http://www.blackplateclub.com/2015/10/even-doctors-make-mistakes-our-2-yr.html .

Noah bear: We had a rough last month with this little guy, but things are better now. Right after Thanksgiving he came down with Hand-foot-and-Mouth, which I think he caught from a play place at our local mall. Poor little guy, he was absolutely miserable... well both of us were really. I was huge pregnant, taking care of a sad little toddler, praying he would feel better soon and no one else in our family would catch HFM. This of course, led to a regression in the progress we had made with his chewing/swallowing therapy because he was in so much pain. I was upset, but felt optimistic once he started healing that if he got back into therapy ASAP that he would carry on. Then, the SLP center instructed us that he had to be out of therapy for 3 WHOLE WEEKS to prevent spreading the virus....the 4 week mark feel right when our therapist would be out of town, SO we have delayed therapy until January. I was very anxious about him missing that much therapy, but felt like maybe the Lord was providing an opportunity for us to rest from our twice a week sessions while we had a newborn. He has regressed a little more with his chewing, but is still better than he was. Also his speech is improving more and more every day, but he still has quite a ways to go with that also. I obviously do not have the one on one time like I did before to work on him with this juggling a newborn at the moment, but I'm optimistic the Lord will provide the time in the future and he will continue to progress. If I don't focus on the positives with him, then I stew in bitterness about the fact that he could have avoided all these trials and tribulations had someone been able to help us earlier on in his life.... SO I choose, optimism and JOY that he is progressing, even if it's slowly. He is talking more than he ever has, and even though it may be a differing opinion than ours most of the time haha, I'm still so grateful to hear his voice and what has been stored up in his heart all this time. Please pray we get back on track, and that he continues to make progress even in the midst of having a newborn sister around!

Now, Julia's journey: She graced us with her presence on 12.8.15, weighing 8 pounds 12 ounces, and was 20.5 inches long. She was quite the cherub and surprised us all with her her beauty rolls, even the doctor haha! As previously stated, I was pretty certain she would be born with some tie issues because they are genetic. They are along the same genetic lines as cleft palate problems, and the fact that I have them, and Noah did too I was suspecting she might as well. She also had daily hiccups in utero, which apparently is a sign as well according to Dr. Martinez. I felt much more optimistic that even if she had ties that we would be able to address them quickly, and avoid the night mare of Noah's feeding's issues that have been an issue for him for 2 long years. I also of course desperately wanted a normal nursing experience, and was hopeful this time would be different. She latched right away, but her latch was definitely not what I knew it should be. She could stick her tongue out much better than Noah could at that point, but I still wasn't convinced we were out of the woods.

Our plan goes awry: Because I used to work in the hospital I delivered in, we were very well taken care of. All of our nurses were AMAZING, and our post-partum nurse had actually just passed her lactation consultant exam. She was so very helpful, and tried everything up her sleeve to help us, but within 24 hours Julia had chewed me right up, the exact same way Noah had... So not wanting to waste time we requested to leave the hospital a day early, and head straight to see Dr. Martinez to get it all sorted out before it got worse. Then the devil appeared in the form of moderate jaundice and changed all our plans. We were scheduled to see Dr. M the day of our discharge, and our super awesome nurse did everything in her power to expedite us leaving, but ultimately we were stalled by bilirubin labs and missed our appointment with Dr. M. We had to reschedule for 2 days later, and my hormones got the best of me. I sobbed, and sobbed, and sobbed.... I had flash backs of unrelenting pain, sores, and situational depression from not being able to nurse Noah, and I was inconsolable (I primarily blame the hormones, but there might have been a bit of PTSD in there as well). I got my self together, and decided to stay hopeful, but my dreams of having a quick fix for nursing problems slowly diminished.

One mountain after another: Jaundice is stupid, and felt like a nail in the coffin for nursing for us. My son was at risk for jaundice because we had different blood types also, but nothing ever came from it. Unfortunately with Julia, hers was cause for concern and compounded our nursing problems. When my  milk came in she was too sleepy to nurse frequently and could only be aroused every 5ish hours to nurse (a side effect of the jaundice). Add not being able to nurse effectively because of her mouth, and you have a recipe for poor milk supply establishment. We also had to have blood drawn daily for 5 DAYS, which caused us to have a crazy stressful schedule. Then we were instructed to give her formula because she wasn't having enough wet/soiled diapers to clear the jaundice, and she was really limited by how much she could nurse because of her ties. If we didn't give her formula, we were being threatened with having to admit her to hospital for photo therapy... needless to say she had some pretty significant nipple confusion on top of everything and we both were quite frustrated.

Finally we get a diagnosis: The Friday after she was born we were finally able to make it into Dr. Martinez's office. Within minutes she was diagnosed with the most severe lip tie you can have, and ALSO the same anterior tongue tie Noah had. Her upper palate wasn't as bad as Noah's though, which was good news. I wasn't terribly surprised, and was ready to have it fixed. It took less than 10 minutes, and was much less traumatic than Noah's because she didn't know what was going on. She latched immediately after, and there was noticeable improvement. It was definitely worth the time, effort, and resources it took to get her seen so soon after birth... but not all was fixed immediately unfortunately.

Side note: I asked the neonatologist at the hospital to inspect Julia's mouth for lip ties to see if we could get them revised before we even went home. She looked in her mouth, and then proceeded to tell me she was completely normal... I told her about my history, and Noah's, then she basically said that nursing is painful and that I was paranoid... I could have punched her in the face (and I'm not even kind of an aggressive person)... but I didn't (of course). I promptly ended the conversation, and got her out of my room as soon as possible.  I told Dr. Martinez what she had said, and she told me to give her grace, because she didn't know what she didn't know... whatever, that doctor was insensitive to my concerns and insulted my motherly instincts. She will not be getting a recommendation from me anytime soon.

Fast forward to today: I sincerely thought the revision would fix all our problems immediately but unfortunately it has not. Progress has been slow, and seriously painful still. I'm off the hydrocodone and am slowly healing, but 2 weeks later we still aren't out of the woods. We have had to 'stretch' her lip and tongue wounds 6-8 times/day to make sure they don't reattach (which she hates of course). She nurses for literally at least 1-1.5 hours every time, and my supply is slowly being built up. I still have to teach her how to latch every time, and unfortunately am having to use my pump more than I had planned just to get pain relief. I have had a good cry almost daily out of frustration but am focusing on the fact that we are SO much farther then we ever were with Noah. I keep reminding myself that any progress is definitely something to be thankful for. I had glamorous dreams of this all being so much easier, but ultimately I think the Lord is teaching me patience, and daily reliance on Him. Which is by FAR the most important thing for any parent to focus on from day to day with little ones.  I have flash backs of Noah being underweight and hungry for the first 4 months of his life, and have to remind myself that will absolutely not be the case this time. We KNEW what the problem was this time, and are slowly moving forward. I'm optimistic we'll get there, I'm just taking it day by day at this point. I also am truly grateful to have an otherwise healthy baby, and fully realize things can always be worse.

Final Note: I wanted to give this update because I have had SO many people inquire about how my kiddos are doing, and they have been curious about how all of this works with early intervention. The one thing I continue to see is that time after time people are getting misinformation and are incredibly frustrated/confused by the differing opinions from their Pediatricians, ENTs, or dentists. If that is you, do yourself a favor and just go see Dr. Martinez. She will give you the answers you're looking for, and she doesn't push a revision if you don't want one. Trust your heart mommas, it's usually right. Regardless of whether nursing ends up being successful this time for us or not, I'm happy to know that we have fixed an issue that would not have simply gone away. She would have suffered from the same speech/chewing/swallowing problems as Noah, and knowing that we are preventing those gives me peace it was the right decision.

Will update again soon hopefully with even more progress. Hope you all have a lovely holiday and Happy New Year!!


Love, Blessings, & MERRY CHRISTMAS!!!!
The Veggie Momma 














 

Post Revision Update, alert semi-gross photos

Well I am GLAD THAT IS OVER!!!! I have had quite a few people curious about how today went, so I thought I'd do a quick update. 

Noah did well all things considered. Last minute my husband decided to accompany me today, and boy am I eternally grateful he did. I hadn't expected to be able to hear my son's blood curdling screams in the waiting room, and it was unbelievably painful to sit there and listen to him so I stepped outside. Luckily the procedure was much quicker than I had expected and we didn't have to endure that torture for very long. He came out bloody and shaken, but stopped crying quickly and calmed down as soon as he got in our arms. Dr. Martinez came out and sat down and chatted with us until all our questions were answered. She. is. amazing!

The rest of our day was of course challenging, but I really think Noah handled it all as well as he could. He is on Tylenol, but still walked around with his fingers in his mouth trying to feel around and told me about every 15 minutes 'momma hurt.' He didn't want to eat or drink anything, but I  managed to get a little bit of Boost in him. The kid has always had a healthy appetite so I'm sure by tomorrow he'll decide he wants to eat something. 

The procedure itself was a little more invasive than what I had originally thought, but that wasn't too surprising since I already knew his language and feeding/swallowing issues were significant. See below for pictures that were as close to his situation as  I could find on the internet. 

This is what Noah's upper lip tie looked like when his teeth came him. He actually fell  and tore it partially a while back, but this is what he was working with until that happened.  This was one of the large reasons why he couldn't nurse. 

This is similar to what he looked like today. Since he had partially torn his like this kid too, his teeth were closer together. But they still had to go in and laser quite a bit. 

As previously stated in the last 3 blogs, the tongue tie was the issue we knew NOTHING about, but by far has been causing the most problems. His tongue tie was not just a quick clip, and then poof everything is better. The picture below is the closest I could find to showing what the bottom of Noah's  mouth looks like, but the diamond shaped wound is significantly larger of course because he is much older than this baby. 

Of course Noah isn't interested in eating... he has a wound under his lip, on the bottom side of his tongue, and on the floor of his mouth. Our next goal is to make sure these wounds don't heal back together, so we are supposed to stretch them on a daily basis. Otherwise we would have to have that awful procedure all over again. The lip I can handle, but the tongue he won't let me get near (or I will start losing fingers - an unfortunate challenge from doing this on an older kid!). So we're relying on our speech path to help us learn how to keep him using his tongue enough throughout the day so it doesn't close up. 

We'll take it easy for the rest of the week, and keep him on a soft, bland diet until he is interested in other foods. In the grand scheme of things, I have full confidence he'll be just fine. As of tonight, it feels like we are finally on the downside of this hill, and once he is healed I'm excited to see "Noah 2.0" as a girlfriend of mine stated haha. I'll update in a couple weeks after we have had some time to see how he is healing. I'm optimistic I will have a lot of good things to share about his speech, and improved chewing/swallowing capabilities (and hopefully expanded food preferences!). Thanks again for all of the support, and encouragement. I hope we have helped someone by sharing our journey and truly appreciate everyone who has reached out to us. I had NO CLUE how many mommas out there were in the same boat! 

Final Note:  I will never even begin to comprehend what is like to be a mother of a chronically ill child, a child with disabilities, or a mother who has lost a child. This journey of ours has opened my eyes a tiny bit to the relentless struggles those mothers face. It has given me a perspective that reminds me that this journey of ours, in the grand scheme of things, really is not that big of a deal. To be honest, it has been more challenging for me then for Noah (until today) because he has never known any different. We have had our moments but in the long run, Noah has always risen above, and I have confidence will be just fine. To those mommies out there who spend days, weeks, months, or YEARS even fighting for their little ones health my heart aches for you... and you are my hero. You have strength like I will never know. I pray the Lord carries you when you feel like you don't have the strength to keep going, and that He gives you supernatural comfort and peace only the Lord can bring. 

Love & Blessings, 

The Veggie Momma