You guysssssss, I took Madison to a new facility for a speech evaluation yesterday and it was absolutely INCREDIBLE. Like one of the most helpful and positive appointments I’ve taken her to in a long time. If you read my post on relearning to eat, you know Madison had to work very hard post meningitis on getting her ability to suck back. We spent a lot of time in speech therapy, had a g tube, and eventually got her strong enough to eat orally again.
We were discharged from speech early on because her therapist saw no issues with the way she was eating. And neither did we. Once we started solids I brought her back to get re-evaluated, and again we were told she was eating safely. Now at that time I was hesitant to try table food, and thought she ate her solids a little bit reflexively, so I specifically asked her therapist to check her mouth for tongue tie or any structural issues; to which she told me all was good! Mouth muscles were strong, no ties of any kind, and she believed the more Madison was awake and practiced eating solids by mouth, the better she would do.
And so that was that. And all was fine up until about a month and a half ago. Around the time Madison’s top teeth began to cut, she started giving us a lot of trouble getting onto her bottle. And I mean A LOT of trouble. I brought it up to her GI team, but since we were hoping to transition her to a cup and focus more on solids anyway, we didn’t harp on it. I had read that it can be common for babies to have some bottle aversion during teething because the suck can be painful to their gums, so John and I just assumed once her teeth fully cut things would go back to normal.
When that didn’t happen we started to get concerned. We were struggling to get proper fluid intake in. Once she got on the bottle she would drink fine and dandy, but some nights it was taking us an HOUR to get her on. And she was really only taking the bottle from John. We have so much going on during the day that I just don’t have that kind of time to spend getting her on one bottle. Talk about stressful. I had previously mentioned to her pediatrician that I wanted to get her back into speech now that we were focusing on solids more, and he gave me a recommendation that he has see great results from. I had kept the name and with everything else going on had never made an appointment, but now we knew it was the right time- we needed help here.
And so yesterday was that appointment, and man was it a good one! I was nervous Madison wouldn’t be awake since that has been an issue with speech in the past. With her alertness issues, it’s hard to give a time that she’ll be consistently up and ready to eat. I gave her half her breakfast in the morning in the hopes she would be hungry, and I guess it worked because she woke up right as the session began!
From the moment I sat down with Nancy, Madison’s new speech therapist, I knew we were in the right hands. Within the first 10 minutes of the evaluation she diagnosed Madison with everything that was likely causing her recent struggles with the bottle. Madison has a severe lip and tongue tie. Like bad. I honestly don’t know how no one saw this in the past 15 months, including John and I. Her teeth coming in definitely made the lip tie more noticeable. And it made sense that once those cut the issues began. Her palette is also really high because her tongue has been restricted from that tie and therefore not molding the palette correctly. Between her tongue and lip tie restricting her mouth from moving correctly, and her palette being so high she is having to work insanely hard just to suck. With all of the additional neurological issues at play, I’m honestly quite shocked she’s eaten as well as she has all this time.
And what really gets me is that I ASKED her old therapist about the structure of her mouth and she claimed everything was just fine. Parents- this proves in itself to always seek another opinion and continue advocating for your child when you feel something is off. We wish we had done this sooner! But that’s neither here nor there at this point. Nancy gave me the number of a top rated oral surgeon and dentist to fix the lip and tongue tie, which should in turn at least get her anatomy functioning properly.
After the diagnoses we attempted to get Maddie on the bottle so Nancy could observe how she eats and swallows. We had a tough time as I assumed we would, but Nancy gave me 2 new bottle nipples to try that work better for kids with high palettes. We also used an infant trainer cup which is sort of like an intro cup and went over additional options we could try, like adding bladders to the bottle. In addition she gave some new spoons to serve solids with that should help her form her mouth over them and pull food off more efficiently, and less reflexively.
Aside from all of the awesome speech tips, she offered help with Madison’s CVI, as well as other alternative therapies to try, an outpatient physical therapy clinic she loves, and a medical equipment store for any of our needs there. I mean, awesome! Nancy went on to tell me that kids like Madison are her specialty. She was so knowledgeable in brain injuries and how neurological issues and the motor skills involved with eating play together. She was welcoming and personable. She was so passionate about helping Madison and assured me that she’s not worried; we have a lot of options on getting her current issues fixed before she develops an actual aversion to eating. She even talked about self feeding to which I nearly fell off my chair. As much as I would love to get Madison to self feed, realistically I didn’t see that as a possibility in our near future. To think she could be doing that in a year is awesome.
After a few stressful nights in a row with Maddie not eating properly, I left the evaluation with such an optimistic attitude. This session was completely different than her previous speech therapy sessions in literally every possible way. The environment, approach, people, I could go on. I’m so happy we met with this team, despite them not being in network with our insurance. The money we’ll spend will be far worth it, I can tell already. I can’t wait to see how Madison improves with her eating and hope for easier meal times at home in the near future! We’ll be scheduling her lip tie surgery ASAP, and can’t wait to keep you all informed as this part of her journey really takes off. Wish us luck!
And for anyone in the tri-state area looking for feeding services, if you can’t tell by this post I highly recommend this group: NJPFA. Actually, they even offer an intensive week for kids out of state, so regardless of where you are, feel free to look into them, or reach out to me for more information!
October 18, 2018
This is such good news!!!
October 19, 2018
Wow that’s great news!