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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

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