what we learned this week

This is going to be a long and wordy post (it's me writing, what do you expect?), so get yourself a cup 'o tea and a nice comfy place to sit, ok?

I called our Feeding Team again to see what our status was and was told we are still on the waiting list. We do have the specialist pediatrician's follow up next week to see how the reflux medication went (ummmm, not so good. it made her not want to eat and unable to ....poop.), but we still have no indication of when she can get in for the outpatient OT. Thus, I decided to call Early Intervention. I had some doubts that she'd qualify, but figured it wouldn't hurt for them to come out and see what they thought.

On Monday morning, the EI team came to the house. We had an occupational therapist and a speech therapist...same as the prior eval. And that's pretty much where the similarities ended, because this was a FANTABULOUS evaluation. They sat on the floor of our living room and evaluated her by actually talking to her and working with her rather than just observing her and I interact and asking me questions. The evaluation consisted of 7 areas (cognitive, communication, social-emotional, gross motor, fine motor, self-help/adaptive, and sensory) and then did an oral and feeding eval since that is her main area of concern. She scored at or above age level for all of the areas except gross motor, which they said she was just below age level, still within the norm, and not something to be concerned. They said it was due to her low muscle tone, but since she's managing to develop within normal limits regardless, it's not an issue right now. For sensory they couldn't give her a rating b/c she's all over the place. She was really shy with them and didn't talk much and even so they put her at 36months for communication b/c they said it's obvious she's bright and has great verbal skills. And throughout the eval, they had to bring out the next age group's set of tasks because she so easily mastered her own age group's tasks...smart cookie!

Interestingly, as they were evaluating her, they were asking me questions about her behavior. They were like "does she climb very well? does she drag really heavy objects or furniture around the house? does she need to be touching you all the time or when she falls asleep?" and I was like YES!! I had no idea any of that was sensory related! I told them about how she drags our furniture around the living room, knocks over heavy items, refuses to let me clip her nails, fights diaper changes, screams in the car unless I'm holding her hand, must have her cheek against mine to fall asleep. I told them how people say I let her get away with things or that I'm spoiling her, but that deep down there is something in me that just knows that she needs to do these things. I can't explain it, I just know. And they said that based on her type of sensory issues, those are completely normal behaviors and classic symptoms. It felt like a huge weight had been lifted and it all finally made sense....so apparently, I'm not crazy or overprotective or looking for something to be wrong when nothing is wrong or a weird mom. In fact, they praised our insight and our ability to meet her needs in ways that probably helped her not to develop worse issues...such as finding a babysitter for her instead of a center when she was so little and not making her cry herself to sleep in order to train her to fall asleep.

Then they gave me three reasons that they think she's not eating and their reasons made MUCH more sense to me than the other team's idea about reflux and not eating dinner together. They said that (1) her tonsils are so insanely huge that she is having trouble breathing while swallowing and that is why eating is unpleasant for her. They don't want us to wait to see an ENT any longer even though our pedi has us waiting till she's at least 3-4. (2) She has low muscle tone, which we already know, but it's particularly prevalent in her face and mouth and makes it hard for her to chew and swallow. Then noticed that while she was eating a pretzel, she would put the whole thing in her mouth and gum it for a while, take a long time to actually finish chewing even a small piece of it, and also would hold it between her teeth and snap it off with her hand rather than take actual bites. So it's A LOT of work for her to eat, which is why drinking milk is preferred...it's easier. She asked me, "If eating was uncomfortable because it made it hard for you to breath AND it was a lot of work for you, would you bother? Or would you just drink milk?" And then (3) she has sensory issues, which we also already knew, but I didn't really know what it meant or how they played out specifically for her. They said that she has limited body awareness, which sort of means that her brain isn't getting the sensory information about "where" her body is or it's getting wrong information about how things feel. Feel includes the sensation of one's body as well has how things feel to the skin and the inside of the mouth. So sitting in a chair to eat is a disorienting thing for her, which is why she likes to stand. And she drags heavy things around the house b/c she is looking for "heavy work" which is basically overstimulating the muscles b/c when she does that, her brain actually gets the information and she gets more of a sense of her body. She's "seeking" to trigger the synapses to her brain that most of us just feel all the time. This is also why she always needs to be leaning against objects or me (she's a sheephearding dog, I tell ya) and why she always wants to be held and why she needs to be touching someone in order to fall asleep and why she needed to hold hinds with me while she was in her carseat and I was driving and why she PUSHES herself into you when she's in your lap...it's her brain searching for sensory info. They also said she has a touch processing delay which is generally developed when babies start crawling and their hands are on the floor and they start learning more about their environment through their hands than their mouths. But since her brain isn't recieving adequate signals from her body (hands), she needs to continue using her mouth to learn about her environment. She has learned to avoid using her hands b/c it's unpleasant and she's getting the wrong info from them....this is why she doesn't touch anyting wet or sticky and why she still puts toys and other nonfood objects in her mouth as much as a 6month old baby does. She's stuck in the mouthing stage of a baby and has learned avoidance behaviors of things she sees as potentially unpleasant, mostly food. Wow!! It all makes so much sense!! Then they gave us the good and the bad news....she's not appropriate for their services. This is good because it means her problems aren't that severe. The reason she wasn't appropriate for their level of intense therapy is b/c even though she has all these issues, none of it has really prevented her from developing and she's at or above level for almost everything. Even though she is NOT eating, she CAN eat and can feed herself so she doesn't qualify. I'm glad we did the eval b/c I feel like I actually UNDERSTAND what she's going through and not like I'm just reading into things anymore.

Ok...intermission...

So after getting this info, I contacted three of my lovely friends who have recent experiences with pediatric ENT's to see if I could get a word-of-mouth referral. I called all 3 doctors they suggested figuring I'd just go with whichever one was in our insurance and could give us the soonest appointment. The first two gave us appointments in late April and mid May. The 3rd said the earliest was May 19th, and then put me on hold. I was on hold for a while and almost hung up, but then she came back on and said, "You won't believe this, but I just had a cancellation for tomorrow if you want that time slot?" Yay!! So today Reese and I headed to her new ENT doctor to see what he had to say. He noticed right away that she is a mouth breather. He checked her ears and said they look fine and then checked her nose and said, "Nose looks great. It's nice and clear. It's also quite obvious that she doesn't use it at all for breathing because her adenoids have completely blocked it." Then he looked in her mouth and said, "Yup, those are some serious tonsils." He determined that her tonsils are not entirely blocking her throat, but they are blocking a significant part of it. His hypothesis is that the inability to breathe through her nose plus the significant blockage of her throat is the MAIN reason she doesn't like to eat. It's very stressful for her physically. Yes, now and then she eats, but for the most part it is a daily and even sometimes hourly struggle. He also said that her snoring and need to sleep with her head tilted up is a sign that she is not able to fully rest and get into a deep sleep at night. This is a problem for many reasons, not the least of which being that a child's growth hormones are stimulated during that deep sleep and if she's not getting it....then her growth is going to be reduced. Aaaahhhhh-haaaaaa! He asked me how her size is and when I told him she was in the 0% most of the time, he remarked that her tonsils are prohibiting her from growing. They are the root of the problem, along with the adenoids. He believes that if they are removed, she will be able to breathe more easily, will be more open to eating, and will have a significant growth spurt within 3 months of surgery. He does not believe it will help directly with the sensory issues, although he feels that they will be easier to deal with once her avoidance of food due to physical problems is negated. She'll have to learn to eat normally, but he's confident it's not going to be much of a problem.


Then he asked if anyone in our families has had their tonsils out and I had to hold back the laughter. Um, yes...pretty much everyone in mine. And those who didn't, maybe should have.


And what does this all add up to? Well, we now have 3 sets of professionals who want her to have her tonsils out now, one who wants her to have them out eventually, and 4 who say she's got mild sensory issues, but nothing that can't be worked out. We also have parents who are nervous, but hopeful and a little girl who when asked if she's a big girl replies, "No, I tiny." We scheduled for her to have her tonsils and adenoids out on May 6th . And that's it. And that's enough.