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Wednesday, October 21, 2015

Our Little Chipmunk, Wk 1 Speech/Feeding Therapy Update

I have had quite a few people ask how speech/feeding therapy has been going so I thought I would just give an update. If you have no clue what I'm talking about, read the previous blog post and you will be caught up if you care to know! :)

First and foremost, the main feeling I have been processing/battling today has been feeling overwhelmed. We have gone to therapy 3 times, and each time I leave feeling encouraged... and a bit overwhelmed. Don't get me wrong, for the first time in 2 years I feel very confident about our plan moving forward, and to even HAVE a plan is something I am very grateful for. The biggest obstacle against me right now feels like time. I'm nearing the end of my pregnancy, my hormones are just ridiculous, I'm tired naturally, and starting week after next I begin my weekly OB check ups. So that means Monday-Wednesday I will be in some sort of doctor-esk office for the better part of my day. I can't even begin to tell you how thankful I am that the Lord gave me sense to quit my job when He did, and provided for my family because I simply would not be able to get all this done... well, not with my sanity in tact anyways haha. 

If I wasn't pregnant maybe it would all seem a little more  doable and I wouldn't be an emotional basket case... Cognitively Noah is EXACTLY where he should be, and is even advanced in his fine motor skills, BUT he is at least 12mths behind in Speech and today I found out I basically have to re-teach him how to eat all over again. So I have 7ish weeks to get as much done as I can with what ever energy I can muster on a daily basis, before we welcome our sweet baby girl into our mix. I just wish I had more time.... I'm not feeling sorry for myself don't worry, I'm extremely grateful we have resources, support, and a great team now and I have confidence the Lord will carry us through this season. It just seems like a lot today... I so desperately want to be able to give Noah all of my undivided attention so that he can get caught up quickly, but I know that for some reason the Lord has planned it to be this way, so I have to trust that He will continue to find a way for him to keep progressing even after a baby sister is added to the mix. 

Side Note: One question I keep getting is why they can't laser his tongue tie right now. The answer my doctor gave me is that they don't want to put a 2 yr old under anesthesia unless it is absolutely necessary because of their short little necks and potential breathing issues. I don't want to put him under unless it's necessary either, so we're are on the same page with that. Also he would need speech therapy anyways because he is so far behind. We'll wait until he is closer to 3 when they usually do them, and continue to work on his speech/feeding therapy until then. Hopefully if I share our experiences for the next 10 months, it will help someone as well!!

Speech tips so far: basically every time we communicate with Noah we need to make it a challenge for him. Ugh, this is hard for me because even though I'm a parent that firmly believes in a winner and a loser, I hate having to challenge him on EVERYTHING. all. day. long. Whether it's playing, or requesting something,  I now have to let him 'get pretty frustrated' and 'play dumb' even if I know exactly what he wants. NOT FUN. If he can't figure out how to communicate what he wants, then we have to repeat over and over and over how to say exactly what he wants. For example: before he used to just look at something and say 'please,' and I would make him repeat the name of the object then let him have it. Or he would just walk over and point to something. Now we have to add 2-3 words at a time, and then have him repeat the simple sentences a million times until he correctly asks for it. Exhausting and really challenging for him because his lips and tongue just don't want to do it! Remember, I have been working on his alphabet, and vocabulary daily with him since I noticed he wasn't talking like his buddies, so that is nothing new. It's the 'let him get frustrated' part my mommy heart is having a hard time with.. this is also where we have learned that on the flip side of the coin he needs to build confidence. So if he even tries to say 2-3 word sentences that seem some what correct, then he needs praise. So we have been working on this for a week, and just today he (unprompted) could put together "go potty," "ball please," "more please," "roll ball," "I color," and a few more I can't remember. For us, that is a big deal, and I'm super proud of my little man! 18-24 months was an extremely rough time for our family, because he was a very frustrated little guy who desperately wanted to talk but was unable to even say single words... now we are MOVING FORWARD!!! Yippee!!!

Feeding: today was a rough day for me because we finally addressed his feeding issues. Honestly the speech stuff is a hurdle for sure, but I'm confident he can get over it and I haven't been super anxious about it at all. The feeding stuff though is something I was not prepared for. As previously mentioned briefly in the blog from last week, Noah is not supposed to have those adorable little chipmunks cheeks at his age. When I heard this last week I was SHOCKED! 1.) they are so much fun to kiss 2.) they are adorable 3.) I had NO CLUE his cheek muscles were that underdeveloped... ugh. again. I have one praise to report from today, and that is the speech therapist told me Noah was 'blessed to have me as his mommy' because I have found a way to keep his weight up, and food preferences relatively varied inspite of his significant chewing difficulties. I needed to hear that... Let me tell you though, it's a bittersweet compliment, because I feel like I have been banging my head against a wall for the past 1.5 yrs trying to adapt to his chewing limitations (that I didn't know were there). 

One of his biggest problems is that when he eats, he stuffs all his food into those adorable little cheeks of his and leaves it there longer then someone should. No joke, he looks like this most meal times... 
He has been doing this his whole life and apparently it's not normal. It always made me anxious he would choke especially when he was little, so I wouldn't give him huge piles of things at a time. Unfortunately he never grew out of it, so I stopped fighting it. The reason why he does this from what I understand, is that he can't feel that food gets pocketed in his cheeks. Also, he can't get his tongue far enough to the sides to manipulate a piece of food around well inside his mouth. So he just stuffs and stuffs and stuffs until he can feel something, and then by some miracle of God gets it safely down his throat. 

Today's progress: We showed up today right at lunch time, and he didn't get his mid-morning snack so he was HANGRY! She told me to bring his normal lunch, and then also his favorite foods so she could watch him eat. His lunch kit consisted of the following: an almond butter and jelly sandwich on multi-grain bread, cucumber sticks, grapes, a cheese stick, unsalted popcorn, a soft granola bar, and yogurt (he never eats ALL of that, she just instructed me to come with options.) Well he decided he didn't want anything but the popcorn, and cheese stick initially and of course he went to stuffing. She was not so happy with this so she took it all away from him and made him ASK for it, then take everything a bite a time. Holy TORTURE for all of us! I offered him half the granola bar which once he got it in him, he settled down a bit. For the rest of the lunch though he was literally sobbing through having to eat his popcorn one bite at a time. He eventually got used to asking for every bite, and then she made him show her that his mouth was empty before he added anything else. My heart was breaking... it was like feeding a 6mth old, all over again... he responded well to her, but that was not fun, and overwhelming to think we have to do that every single meal until his cheek/tongue muscles finally strengthen. BUT practice we shall, and I'm confident that by the grace of God we will both live through the 3 times a day we have to practice this.

Food rejection: at the end we discussed his recent rejection of foods that he has always loved. She said that is totally normal for a 2 year old, but that Noah probably has less of a tolerance than most toddlers because it's already so hard for him to eat to begin with. So she suggested pairing the foods he loves with other foods in new ways, and see what he does. She put his popcorn in his yogurt, and at first he hated it, but eventually picked it up and ate it after she encouraged him to 'kiss' it and he knew it was a taste he liked. This helps him develop a tolerance for new textures as well since he's never had soggy popcorn before. Also he wasn't interested in his cucumbers at first, but once I put them in the yogurt he licked them a few times, then ate them on their own once he remembered he actually LIKED the way they taste.  I tried that later at home with celery as well which he has been boycotting for  a solid week, and it worked like a charm!! It's a bonus for the kids as well, because apparently they love to dip stuff at this age. 

Overall I definitely feel like he has made progress over the past week, and that is very encouraging to me!!! I really like our therapist, and he does too which is a huge blessing. All in all, things are moving forward, and I can see the light. As previously stated, this isn't a chronic disease process or problem that we can't resolve with a little bit of effort, and I understand fully in the grand scheme of things this isn't that big of a deal. I feel like I have a good perspective on life/death, and what a true health battle is, so I'm confident we will get through this. I just hope by sharing our story that we can help someone out there, or bring a little more awareness to this topic. 

Keep fighting the good fight of trying to raise healthy little angels!!!

Love and Blessings,
The Veggie Momma

Thursday, October 15, 2015

Even Doctors Make Mistakes: Our 2 Yr Struggle

Well I have to say that maternal instincts are certainly a very real thing, and they definitely should be trusted. This blog is about a really long journey that started when Noah was born, and has finally come to sort of a resolution yesterday. If you had any problems breast feeding, problems with feeding your kid, or noticed your child has speech issues than this blog is for you. I was relentless in my search for answers, and after 2 years finally got some. I want to walk through Noah's journey with a problem that started at birth, to hopefully help someone out there who has struggled/is struggling with the same thing.

The beginning: It all started when Noah was born, and the normal 2 week painful nursing window never went away. My sister in law has 4 kids, and was a rock star at nursing. She always told me to hang in there past the first 2 wks, and it will get better. 4 wks went by and I was in so much pain on a daily basis I had to continue to take hydrocodone, in addition to Aleve 2x/day just to get through the day. I called my OB, talked to our pediatrician, and spoke to my co-worker who was a lactation consultant at the hospital, and everyone was out of suggestions. His latch 'looked' good, and there was no KNOWN reason for why he was literally chewing me up, AND why he couldn't gain weight. He started out at 8# 1oz. and dropped to <10th percentile quickly and never got over it for a while. We had a very supportive pediatrician who never suggested formula, but I absolutely knew something was wrong. A sweet friend, trying to encourage me, suggested I pump and give Noah one bottle a day to relieve some of the pain and help promote healing. I cried and cried and cried the first bottle I gave him... The one bottle a day helped, but I never healed so I slowly transitioned from nursing all day to pumping all day then nursing only once a day. I was a slave to the pump, and I felt guilty because a lot of times I had to put him in his swing to pump, and I just had to watch him from across the room. Heart... breaking... My supply barely ever provided for his daily feedings also. 

The first specialist: From the recommendation of a friend I sought out a pediatric dentist to investigate his upper lip. I suspected he had an upper lip tie, which if you have never seen one, his upper frenulum looked a lot like this. His was even tighter, I just can't find a picture, basically it looked like it hooked completely under his gums. 
(picture borrowed from: https://www.breastfeedingmaterials.com/case-studies/infant-retracted-upper-lip-and-maternal-nipple-trauma)

So I get to the pediatric dentist expecting some answers, waited 30 minutes, and he told me my son was totally normal. NORMAL? Really?! I had seen a lactation consultant a million times and nothing was improving in my pain or healing, so I knew something was wrong. What I left with from that visit was that I was not TRYING hard enough to breast feed... AND that I was crazy apparently... not to mention More heart ache... 

My sanity starts to fade: I'm pretty confident I never dealt with postpartum, but I was extremely defeated by all of my nursing problems. I think it was more along the lines of situational depression. I felt like an UTTER FAILURE! All the hopes and dreams I had of nursing my son and the wonderful experience I had hoped it to be, began to fade. As a dietitian I KNEW that breast feeding was the absolute best thing for my son, and I was damned and determined to not give up. I'm stubborn like that... Side note: I never healed until I completely stopped breast feeding altogether, keep that in mind. So pumping HURT, the one time/day I nursed HURT, my heart HURT, and my spirit was crushed... 

Reality sets in: My sweet friend who is a pediatric Nurse Practitioner came to visit with her son who was 2 months YOUNGER than Noah when he was about 14 wks old, and when I looked at them side by side I knew something wasn't right. They were the EXACT same size. Noah was growing extremely slowly, and I tried to act like I didn't notice but I couldn't deny it anymore. It started to sink in that something was wrong... and it felt like all my fault.  He was such a wonderful baby, full of joy, and a great sleeper that I didn't want to accept the truth. BUT the ugly truth was, I was totally failing at breast feeding. I didn't want to see the signs, but they were definitely there. One big sign was that he would cry at the end of a feeding like he was still hungry, but would take a pacifier and calm down. I wasn't necessarily trying to ration the milk I did have, I was just utterly confused because even though he seemed hungry, he had HORRIBLE REFLUX! I tried every reflux solution under the sun and it never got better. So if I GAVE him all that he thought he wanted, he threw most of it up. The reflux will be explained later, but it was NOT due to the fact that he wasn't hungry. He was very hungry actually. My sanity continues to fade... 

The transition to formula: I will never forget the next couple of weeks of trying to hold on to breast feeding, and realizing it was almost over for me. I spilt the only stock pile I had and literally SOBBED.. for a very long time.... After speaking with a friend, she told me that her sister in law was an over producer and had an enormous stock pile, and that she would probably donate some milk to me. At first I was weary of accepting it mainly out of pride, and then I was unbelievably humbled that another woman would be so selfless to give up 'liquid gold' so that I could continue to have a child that held the title of "Exclusively Breastfed."  I realize now that I held on to the title at the end much longer than I should have. This sweet friend graciously gave us at least a couple weeks of milk, and then at 16 weeks I finally gave in and gave him formula. I will never forget her kindness, and generosity to love another mom through a tough season and provide for my baby. I gave Noah Earth's Best Organic Formula (because it made me feel better it was organic for some reason) and he never looked back. 

Formula was a gift from heaven: at the time I resented the formula, I LOATHED the smell, the texture, the look on his face when he would transition from a bottle of breast milk to formula... BUT he was FINALLY growing!!! He was back on his growth curve, he was happy, I stopped pumping as much, and by 6 months old he had completely weaned himself. He still had reflux for reasons we didn't understand at the time, and I had to have him on fast flow nipples or he fussed and fussed, but he was GROWING ya'll!!! He jumped from the 10th percentile in weight and 60th in height, to the 50th in weight and the 90th in height in ONE MONTH! He was back on his original growth curve, and all was FINALLY right in the world... so we thought. 

Fast forward to teeth: When Noah's teeth finally came in, there was a gap SO HUGE in the front that people actually thought he was missing a tooth. I knew he wasn't... I KNEW it was the frenulum. I took him to a pediatric ENT who formally diagnosed the upper lip tie. She said that boys usually tear them on their own eventually, and they don't usually correct them until their adult teeth come in if they need too. So I went to ANOTHER dentist (a different one of course), and she confirmed the same thing... so we moved on with our lives.. again. 

Fast forward to talking: Noah has never hit any of his milestones super early, but he certainly has never been late. I started noticing when he would attempt to talk he could NEVER say things the way his friends could though. He tried... but he just couldn't. I thought maybe it was just another thing the Lord needed to teach me patience on, so when I quit my job I started working with him daily on letters, reading, and such. He got better, but still was not where his friends were, even the younger ones. I spoke to a speech and language therapist at the hospital prior to quitting, and she confirmed that his speech issues could be related to his lip tie. I spoke to a good friend who had a daughter who had a lip AND tongue tie, and ANOTHER friend who is a dentist and finally decided to see ONE MORE SPECIALIST. 

FINALLY the right dentist! At the recommendation of 2 people I got an appointment with only 1 of TWO pediatric dentists in ALL of HOUSTON that specialize in lip ties. I went in without any expectations, but was happily surprised. Within 10 minutes of being there my little guy had been diagnosed with not only a significant upper lip tie, but also a deep rear tongue tie. I sit here barely able to put into words how utterly validated but UNBELIEVABLY FRUSTRATED I was at the same time. My breast feeding had been robbed from me, my sanity stretched, and my heart broken seeing my little guy HUNGRY all that time, and I KNEW in my heart and soul that something had always been wrong...

IMPORTANT NOTE! Apparently lip/tongue ties are fairly normal, but only a small percentage of the population actually have babies that can't nurse from them, AND an even smaller percentage need to have any sort of intervention. The sad part is that significant cases like Noah's end up turning into situations where the mother seeks answers, doesn't get any, and then just ends up formula feeding (Which, thank the Lord for formula, otherwise our babies would have no other options.) Or in my very own instance, I didn't talk until I was THREE and then was in speech therapy until second grade.  One VERY interesting thing I learned was, that apparently mid wives and doctors used to be VERY knowledgeable about ties until formula was pushed in the 50s. Historically babies would DIE, yes DIE if their mother's couldn't nurse. Midwives and doctors were actually so familiar with ties, they could tell as soon as the baby was born if it was lip/tongue tied, and they clipped them immediately. Nowadays, there are only a few specialists who even know that there are more than 1 or 2 different ones. If you suspect your child has a tongue tie, and you live near by I would be happy to connect you with the people I know who can help you. 

The FINAL solution, and fast forward to present day: The dentist wasn't too concerned about his health/teeth in general (he has maintained >50th percentile in weight, and >95th percentile in height ever since we started formula), but still recommended we see someone for further evaluation of his speech. After months of trying to schedule an appointment, yesterday we FINALLY had an appointment with a pediatric speech therapist to see if we could work on his speech (this is their first option before lazering any of ties, which is usually done closer to 3 if they are not nursing any more). SO yesterday we go to a speech and language center in Katy, again expecting very little, and left with more information than I could have imagined. Not only is he definitely suffering from a bit of a significant language issue, but he also presently has feeding problems... STILL!!!!! His tongue can't move properly, and his cheek muscles are under developed therefore he can only chew a certain way.  His chubby cheeks should have thinned out by now, but are still there despite his body thinning out. She was shocked at how well he has adapted, given the significance of his tongue tie. She attributed his reflux/ nursing problems as a baby 100% to the tongue as well. I just sat there in utter disbelief that it had gotten this far... TWO YEARS LATER and I knew something was wrong week 3... 

Validation, frustration, tears, and motivation: between yesterday and today I have felt a myriad of emotions. TRUST ME, in the grand scheme of things... I KNOW this is not that big of a deal to anyone but Jamey and I. He does not have a significant medical issue, and he will be fine... he has managed to thrive, grow, and adapt in-spite of it all. But this has legitimately been a struggle for me personally. I desperately wanted to breast feed and couldn't, he was hungry for much of the beginning of his life, we have had eating issues this entire time that I thought were just related to a million other things... and above all things I had specialist after specialist make me feel like I was CRAZY!!!!!!!! My maternal instincts were there, and it breaks my heart to think that I couldn't have done something sooner. My pregnant hormones got the best of me today and I cried about it out of frustration, and now I'm being proactive about it trying to educate you all in this blog.

The future: I'm almost 32 weeks pregnant but starting Monday we will begin speech therapy twice a week with someone who specializes in eating/speech problems. According to the lady we saw yesterday he will still most likely need the rear tie lazered before he is 3. For right now, I'm grateful we finally got answers, but I'm frustrated they took this long to come. Like I said previously, in the grand scheme this is no big deal... but for all the frustration and tears I have shed over the past couple of years over a problem I knew existed but no one believed me about, this finally feels like validation. 

I pray this has shed some light on a topic very few people are properly educated about, AND that it encourages you to trust that instinct inside of you that tells you if something isn't right with your little one. Also, don't forget to QUESTION medical professionals... it's hard for me to challenge people to do that knowing that I never loved to be questioned, but it needs to happen. Everyone is human, and NO ONE has all the answers. I'll keep the blog updated on how speech therapy goes, and if Noah's food preferences expand once he can finally use his tongue properly...  

In the mean time, keep fighting the good fight of trying to raise healthy little ones!!

Love and blessings, 
The Veggie Momma