Just Found Out Emmalin Has To Get A Feeding Tube

For the last couple of months, Emmalin has slowly stopped wanting to eat and drink. It's been several things that have been/still are in the mix that got Emmalin to this point. About 3 months ago, when we were at Dr. Weisenberg's office (Emmalin's epilepsy specialist and "main" doctor), she had brought to our attention that Emmalin had not gained any weight since her birthday (October 29th). She encouraged us to meet with a dietitian (again) and set up a "game plan" for if things were to go "south" (and of course these were not her exact words). So we did that and I even added another feeding therapist "on board" that we would see once a week (so now we have feeding therapy twice a week). The additional feeding therapy is done at the Ozark Therapy Institute (http://www.ozarktherapy.com/ or you can check them out of facebook at Ozark Therapy Institute) and our therapist's name is Dan McCool, Speech-Language Pathologist . He is AMAZING!!   He is one of the very few therapist out there that treat the child that they are seeing "as a whole" instead of just treating the one area.
Anyway... we met with the dietician in Springfield, it was randomly after that things starting going south. Little by little Emmalin just stopped wanting to eat.

Emmalin and Dr. Weisenberg

Here's an example:
We went from getting Emmalin to drink around 24-28 ounces of Pediasure a day (which still isn't much) to around 16 a day (and sometimes less). She still eats some food, but it is mainly forced and it's not much.

So when we went to visit Dr. Weisenberg again, yesterday for a routine checkup, we found out that Emmalin still hasn't gained any weight and she has actually even lost a pound. We weren't surprised by this from the way she had been eating. So when Dr. Weisenberg brought up the subject of a feeding tube, as much as we were hoping she wouldn't mention it, we were not surprised by this either.

Some people have a hard time picturing things, so here's another example:
Emmalin wore 24 month clothing last summer. She was in 2T all last fall and winter/spring. When I went to get her old summer clothes out to sale from last year, not only could she wear them all, but some of them were even too big on her now. She has gone from 24 months/2T clothing to 18 months.

There are still SO many things that have to be sorted out and a lot of questions that don't have answers at this point because everything is so new. We do know that we will be getting the procedure done at the St. Louis Children's Hospital. Dr. Weisenberg has referred us to a general surgeon named Dr. Jacqueline M Saito, MD, to actually to the insertion of the tube. She is then having us follow up with a GI specialist, (we are still working on who that will be) who will then help us with the "maintenance" of the feeding tube. The GI will also be the one who will also address Emmalin's acid reflex issues (that are not major but there).

We also know that before Emmalin will have the feeding tube surgery done, we will have to do an "initial visit" with Dr. Saito and Emmalin will also have to have an upper GI done. We have been told that they do the upper GI to make sure that everything is in place/where it's supposed to be before the do the surgery. We now know that we are supposed to meet with Dr. Saito on the 20th but do not know at time or date for anything else. I will keep everyone posted as we find out more information.

Ok, so all this being said, YES Jarrad and I are totally bummed, scared, sad, nervous, etc... But honestly Emmalin is going to be getting SO many positive things from this feeding tube that Jarrad and I are also very optimistic. And these are the things that Jarrad and I have decided to focus on and we would like for you to do the same.

Ways Jarrad and I Feel Emmalin Will Benefit From Having A Feeding Tube:
1. Her body will have more energy and feel better all-around because it will be getting the nutrients that it needs
2. She will get to take her medications through her tube so she won't have to taste all of the bitter medication (3 times a day)
3. She will 100% of the time get 100% of her medication (because sometimes she will spit some of it out)
4. We think she could even sleep better because her body won't be hungry all the time (therefore restless)
5. She will do better and be stronger in therapies (because she will be well rested and have more energy)
6. If she is having a "rough day" and sleeping a lot, I can feed her through her tube while she is asleep (there have been several times where Emmalin will have a seizure right before or in the middle of eating and she doesn't eat anymore for that meal)
7. When it comes to eating, we will be able to focus on the quality of what we are trying to do instead of the quantity of calories we need to get in her
8. She will start gaining weight

 

Emmalin and Jarrad after her ERG Test Today

 I spoke with a mother of another little girl who has CDKL5 and just got a feeding tube last week. She said that her daughter started gaining weight this week and within the first week of getting the tube, she was smiling and starting to laugh again. We are hoping for the same for Emmalin :)

I think it's also important that you know that we ARE NOT GIVING UP on Emmalin eating through her mouth (I'm sure you could tell that by some of the things that I have said). We are going to be keeping her feeding therapies going and work toward some great goals (but will be very challenging for Emmalin). Through our therapists we are going to try to strengthen Emmalin's muscles in her mouth (which will help her have more control in her mouth and help her chew better and easier) and we are also hoping to get it to where she enjoys eating (because right now she doesn't) and get a bigger variety of foods that Emmalin will tolerate (flavor wise and larger textures). So we have a lot of work to do and we realize that it is not going to be easy and that it is going to take a lot of time to try to accomplish everything (or even some of these things). But I am very confident that I have the right "team" behind Emmalin to give her every tool possible to help her succeed! Yes, there is a possibility that she may never eat on her own, but there is also the possibility that she may eat completely by mouth again one day and that's what we are shooting for!!!

When it comes to Emmalin's feeding tube, we are also 100% confident that we have the right team of doctors Dr. Weisenberg has been so amazing with us and Emmalin so far and we know that whoever it is that she refers us to is on top of their game. We have been so blessed that God has always given us such an amazing team of doctors/nurses/therapist/coordinators that genuinely care for Emmalin. And we are trusting in God that it will be the same in this case too!


Like I said earlier, yes we are nervous and scared about this new journey, but we are also very optimistic about all of the possible benefits!!! As we progress in this new feeding tube journey, I will do my best to post updates to keep everyone informed on where we are at with things and how Emmalin is doing.

Emmalin trying to wake up after her ERG Test

                                               God is SO good and we are SO blessed!