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Wednesday, July 2, 2014

Lots of appointment updates, one not so fun one

Last week we had a few appointments and this week we had lots more!.  The last was a dentist appointment for all three kiddos.  We switched to a holistic dentist, Dr. Butler, and loved her!  The kids really enjoyed their appointments.  Madi's teeth were great, but Conner and Ramya each have a cavity.  Conner's cavity is where a previous filling chipped and Ramya's cavity is a new one.  We also discovered Ramya has double teeth (both her adult and baby teeth in at the same time) not just on the bottom middle two teeth, but also on her tip incisor teeth.  All of the baby teeth are now wiggly, so the dentist is giving her 6 months to get them out on her own, or else she might need to pull them out so that they permanent teeth do not get damaged.  We've been wiggling like crazy and are hoping to get them out soon.  She also already has her 11 year molars, which was quite surprising.  Her mouth is so very very tiny, I'm not sure how all of these teeth fit!  When she got molars shortly after coming home, I had assumed they were her 6 year old molars, when in fact they were her 11 year.  Crazy!  We go back to have both kiddos cavities fixed and then we will also have Conner and Ramya's molars sealed at the same time. 

Dr. Butler confirmed what I have wondered for quite a while now; Conner has a lip tie.  I missed it as a baby, but he had all the signs.  He had a lot of problems with latching, he was very uncomfortable and gassy and spit up a ton, he cried a lot even though I would rock him and bounce him and wear him in a wrap, his top teeth got lots of decay even though he never drank juice, never had a bottle propped (wouldn't even take a bottle when I tried), we always brushed his teeth, etc...., and also had speech delays.  After hearing about my friends kiddos who had lip tie, I started doing some research and my gut feeling was that he had a tie.  The dentist confirmed it and tomorrow we go meet with another dentist who does a laser procedure for the lip tie.  I'm anxious to see what he says.

On Tuesday we had an appointment that was very hard on me.  I took Ramya for her 3 month weight check with Dr. Nemivant, her pediatrician.  Unfortunately, Ramya has lost weight (3 ounces) since her last appointment 3 months ago.  Dr. Nemivant says he is giving her 3 more weeks to show a gain and get back on her own little curve, or he will have to send us back to GI.  He isn't worried about her being on the charts or not being on the charts, but he is concerned that she's not only not gaining weight, but that she's actually losing weight.  He also suggest a g-tube might be the best option for her right now.  This is so not what I wanted to hear.  He thinks if we didn't have to worry about calories and she could just eat for enjoyment that it might help her re-set her feelings about eating.   We've talked about how she may not have developed fat cells as an infant, due to severe malnutrition, about how we don't know the size or weight of her birth parents, about the India growth chart, and all of that good stuff.  He agrees with me about why that would make her smaller, and he's ok with her being on the smaller side and not on the charts, he just wants her gaining on her own curve.  He is very calm and laid back and doesn't worry about much, so when he does, you know he's pretty concerned.

I'm going to be honest, this was a huge blow for me.  There is just no way for me to convey how hard I work on eating with her, and I just feel like a failure right now.  Each meal with her can easily take 45 minutes to 2 hours.  The 45 minutes I don't worry about, but when it takes her 1-2 hours to eat a small meal, it's hard.  At that point, she's burning more calories eating than she is taking in.  She really does not like eating, even though she eats food she choses, a large variety of foods and textures, foods from India, foods from the US, etc....  It doesn't matter if she picks the food, it doesn't matter what the food is, it doesn't matter if I feed her or she feeds herself, she just doesn't like eating.  She will tell me the food is good, but she still doesn't want to actually eat the food, or at least not past a few bites.  Sometimes, like tonight, she does well and she eats a good amount within about 45 minutes, but that's not usually the case.  It's especially bad if she has had to share my attention that day because I babysat, or if she feels like she's not in control.  She gets very jittery at the table and she does anything to avoid eating (itching, looking around, asking a million questions, squirming all over, not chewing and pocketing the food in her cheek, etc...) past the first few bites.  I try so hard to make her food she enjoys eating.  I give her food choices.  I sit with her and we listen to music and I talk with her.  I put so much work in to trying to make sure she eats a decent amount and that she likes what she eats.  I add fats and calories to EVERYTHING to try and help her gain weight and help make every bite she eats nice and healthy and full of good fats for her.  I literally spend HOURS a day.  It's really hard.  Oh, and I will offer her a treat after eating, and she will say "no" most of the time.  She loves icecream, but tonight after dinner, she didn't want to eat any.  And yesterday, when we made homemade cookies together, she didn't want to eat any.  This is pretty usual for her.   She also rarely wants a snack.  When I give her one, she usually just kind of picks at it or doesn't touch it at all.  On a very rare occasion she will ask for a snack I always make sure she gets one, and also offer often. 

At this point I don't know what else to do to help her.  I love her so very much, and I just really wish she enjoyed eating.  It makes me sad to think it's so hard for her and I just want to be able to fix it.  I was so stressed out yesterday I got a migraine and felt sick to my stomach, and it was just no fun.  I have a call in with an attachment therapist so we can try and deal with the emotional side of eating for her and I can get tips on how to best help her.  I am also getting her referred for a feeding therapy evaluation so that I can make sure there is nothing muscular or structural getting in the way.   I found a protein shake she will drink that has 300 calories in it, so I am having her drink one a day (spaced out so she enjoys it) in between meals for extra calories.  I'm also trying to get some raw milk in her, because that has good fats too.  Oh, and I am starting a new mineral supplement with her to try and build up her body, as I am sure she is still depleaded from the years of inadequate nutrition.  I'm doing all my normal tricks as well, like adding both grass-fed butter and nut butters to her pancakes and waffles (which are homemade so there are none of her allergens in them), in addition to the powdered sugar she loves, having her snack on nuts when she will snack, adding lots of butter to veggies and quinoa and rice and the such, having her dip her chicken in smashed avocados or a dressing she likes, etc....  Her OT suggested having her hypothalamus looked at to make sure it's functioning properly, but she wasn't sure how to go about that.  She has an appointment next month with the endocrinologist, so I plan to discuss that with her. She has an MRI she can review, and maybe that will shed some light there.  Other than that I'm praying really really hard that we can get over this set-back and back on to her own little curve.  We have an appointment set in 3 weeks, so I'm praying she can get back on track by then.  If not, I do want to try a new GI doctor, as I didn't feel the last one was a good fit for us.  If we need to go that route, hopefully the new GI doctor will have some good ideas we can try. 

We also got a new panel of food allergies run on Ramya yesterday, but with her naturopathic doctor downtown, instead of at the pediatricians office this time.  Her last test through Sonora Quest didn't test some big things, like dairy and soy, and I feel it's important to know how her body reacts to those.  This time we are using Biotec labs to get a better picture of her IgG and IgE reactions. I hope to have the results within the next few weeks. 

Today we headed back down town for our 2nd appointment downtown this week (it's actually our 3rd appointment, just the 2nd one downtown).  Madi was in desperate need of an adjustment on her wheelchair and is excited to have it fitting well again.  They were blown away at how much she has grown this past year.  She has had the chair just a little over a year, and already she has almost outgrown it!  We even ordered it big on purpose so she would have lots of room to grow!  There is still room for another adjustment or so before we will need to order a new one, so that should buy us another 6 months to a year at least.  Ramya's wheelchair (which is Madi's old wheelchair) still fits fine.  She wasn't needing any adjustments because she hasn't grown much, so it's still long enough and wide enough for her.  Eventually I hope to get her a new chair, but this one still fits her really well so there is just no need right now. 

Tomorrow we head downtown again to see the dentist about Conner's lip tie.  Please pray for wisdom and guidance for us there, and pray that if he needs it corrected, it will be quick and painless for him with a fast recover time.  Please also be praying for Ramya to gain weight and get back on her curve.  I think that's it for now!  I'll update when I know more about Conner's lip tie.   


Anonymous said...

Laser detachments of frenula feel like a dull ache(without medication) for about a week,in my experience. Smiling is awkward, but I wouldn't expect there to be true pain.

The smell of burning flesh during the procedure can be disconcerting. It wigged me out.

Hopefully Ramya will start eating to make mommy and daddy very happy!

Anonymous said...

That must be so hard for you and Ramya to have to deal with on a daily basis. Maybe getting her on a schedule might help? She might find comfort in the consistency of having the same thing to eat on a weekly basis (i.e. Monday is chicken nugget day, Tuesday is turkey sandwich day...). That might be similar to how they did it in the orphanage, and it might be less overwhelming (and more familiar to her) if she knew exactly what was coming everyday.

Seeing an attachment specialist also sounds like a great idea for her. There definitely seems to be a connection between food and attention. It's so sad to think that in the orphanage no one cared about how she ate, and she probably ate alone. Now she has a great mama who will sit with her for as long as she is eating, it would be hard for any little girl from that situation to give that up.

You seem to be doing everything right, maybe my suggestions can help, or lead you to something else that might.

Your supporter:-)

Anonymous said...

We love our little guy's G tube. We really balked at getting it for a long time. Now we think all kids should have them (Just kidding) But he is doing great now and we know it is what is best for him and really no problem, just benefits.