I am happy to report that after 5.5 days on the new dosage of neurontin, there has been a notably positive change in Raya's mood and disposition. Whew. :) I had been really conflicted about where to go next with it but I think increasing the dose was the right thing to do.
I struggle more with some decisions than others when it comes to medical care and nutrition for my children. Some obviously have more potential for impact than others, and I feel like decisions about medications and feeding are the most significant decisions we have to make. It's hard for me to explain the reasoning behind some of our medication decisions. Sometimes all I can say is that we made the decision we made because we felt that we had exhausted our options, a doctor thought it might help, and we hoped he or she was right.
I'm learning that there are people that I can't talk about those things with because their own personal convictions about medication and vaccinations, especially in children, are so strong that they are unwilling and/or unable to see any viewpoint but their own. They will never understand the journey that has led us to the decisions we have made because it has not been their journey, and that's ok. I'm also learning to bite my tongue and take things with a grain of salt, and also to be humble in my own opinions as well. What works for one person/family may not be right for another.
Personally, I don't believe that there is anything inherently evil about the medications we use to control Raya's symptoms or the canned formula that has helped her to reach and maintain a healthy weight after such a turbulent first 18 months of life. I feel like we have done the best that anybody could have done for her. That being said, I also believe that there is a time and place for everything and that you can't keep doing the same things all the time and expect different results. Over time as things with Raya improve, we are able to set new goals and then make the changes that need to be made in order to reach them. Case in point: formula and food.
I never wanted to give her formula at all. I had breastfed my other 3 kids exclusively until around a year and had planned to do the same with Raya. I went to great lengths to avoid having to give Raya formula (i.e. eliminating all possible allergenic foods from my diet which left me with about 8 things I could eat). Even when formula became necessary to prevent her from starving, I kept my diet heavily restricted for 3 months while I kept pumping in hopes that she'd be able to tolerate breastmilk again at some point. That never happened and eventually I came to terms with it and was able to let go of the feelings of disappointment and failure that came with having a child who needed formula and a feeding tube in order to survive and thrive.
I don't remember exactly what that turning point was for me, but I think it was about the point where she started to climb the percentiles on the weight chart and caught up with some of the developmental milestones that had been a concern to us. When I realized that she was indeed thriving on formula, I stopped seeing it as the enemy and started seeing it as our ally.
Last February we made a long and difficult but ultimately successful transition from her amino acid-based elemental formula (Neocate) to a less broken-down peptide-based formula (Peptamen Jr.). We learned early on that any changes involving food had to be done very gradually or Raya's body would have a hard time handling them. Because we also had concerns about food allergies and intolerances, we proceeded cautiously with the introduction of "real food" into her diet. We started out small with a teaspoon or two of baby food through her tube.
Everyone has their own reasons for doing blenderized diets (real food liquified by a high powered blender and fed through the feeding tube) instead of commercially produced formulas. Some people do it because they like the idea if knowing exactly what their child is being fed and having complete control over it. Some kids that have had problems with vomiting and diarrhea seem to do better on the right mix of blenderized food instead of formula. Like I said before, I have no problems with formula and it truly did save Raya's life, but for a long time, I was curious about how Raya would do on a blenderized diet. However, after discussing it with her doctor, reading everything I could find about it and asking some other moms about how they do things with their tube fed kids, I realized that the time wasn't right for BD yet. At the time, she was still J tube fed, and the general consensus is that the intestine is not the best place to send real food if it's not being broken down in the stomach first, and Raya's formula was bypassing her stomach and going straight to her small intestine then.
Fast forward a few months and Raya is at a much better place. She's tolerating gastric feeds like a champ, experimenting with food, and doing great with bolus feeds (larger amt in a shorter period of time) instead of needing continuous feeds. She's introduced herself to a variety of foods either by asking for tastes of our food or having bites of things we offer her. The concerns over allergies have subsided since she's had negative allergy tests, so it's pretty much fair game now.
So where I'm going with all this is that while we aren't ready for a fully blenderized diet yet, we are moving in that direction at the pace we're comfortable with. For the past few weeks, we have been replacing one of Raya's 4 bolus feeds with real food. It's been a combination of counting every calorie she eats (a fun little challenge :) and filling in the remaining calories with concoctions of real food that I put through her feeding tube. For the most part, it hasn't been too difficult and is actually kind of fun, albeit more difficult than opening up a can of formula. :)
So far I've been doing it the easy way by using things like store-bought baby food and kefir but I've also put pureed turnip and beet greens in as well as pureed soup and vegetables. I'm happy about giving her food that we would eventually like her to eat anyway and equally happy that I can still give her the nutritionally complete formula that her body has grown so well with in addition to the blenderized food. Eventually maybe we will transition to a fully blenderized diet but for now at this point, doing a combination of food and formula is something that I am comfortable with and that gives us a lot of options and direction for the future.
And here's Raya's latest bit of mischief. She's a fast one, that's for sure. In the 30 seconds that it took for me to finish putting her pants on her and walk into the kitchen, she ended up back in the bathtub fully clothed. Such a stinker! :)
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