We Have Weight Gain!!!

I am singing from the mountaintops over here!

Ramya has officially gained weight and we are NOT headed to GI!  Yeah!! 

Today was her most recent weight check and she gained a little over 2 pounds!  The doctor came in and said (very excitedly), "What have you been giving her?!?!?!?  It worked!!!"  The answer to that is our new little concoction, given once a day in addition to her regular meals (she drinks water other than this drink during the day).  The doctor gave her pediasure, but it hurts her belly and I'm not super fond of the ingredients, so we make our own.  Here's what I put in it...

- 1/2 container of Lucerine protein refuel (She loves the taste, so this way she enjoys drinking it.  It's not organic, and not that great, but it does the trick!)....  150 calories, 2 grams of fat, 10 protein.

- 1 cup raw milk from local organically-raised grass-fed cows.... 160 calories, 8 grams of fat, 8 protein  (it also has TONS of nutrients to help build up her system)

- 4 tablespoons organic heavy whipping cream.... 200 calories, 20 grams of fat, no protein

That give her a grand total of 510 extra calories, 30 extra grams of fat, and 18 grams of protein.  The doctor was happy with this combination and the amount of calories and fat in it.  Since she doesn't eat much, this should help her reach the daily calories she should be consuming.  Hopefully this will keep her growing on her own little curve and help build her body up.  She enjoys drinking it, which is huge!

I honestly think that her last weight check was skewed and she really weighed more last time, but hey, she gained, and that's all that matters!!  She still takes between 1-2 hours every meal to eat, which can be stressful, but my focus really is on trying to get to the bottom of whatever is going on that is keeping her from liking food and enjoying eating.  I want her to be successful and enjoy eating, as I feel that will be the best for her in the long-run.  This buys us a little more time as we continue attachment therapy, and also start cranial-sacral therapy, and hopefully continue to heal.

I'm taking a big sigh of relief right now!  Come rejoice with me! 

 

Our First Attachment Therapy Session, Cranial Sacral Therapy, and Ramya's Feeding Evalutation

This week we had our first attachment therapy evaluation, as well as Ramya's feeding evaluation. 

Our first attachment therapy session went well.  Ramya did her usual charming acts because there was someone new in the house.  She usually tries to charm strangers.  She had her over-the-top fake giggles, was overly-loud to get attention, and tried to wedge herself, physically, between the therapist and Madi to take attention off of Madi when the therapist was talking to her.  The therapist handled it all wonderfully, though, and I am sure she sees it often. 

She got to observe lunch time, which was nice.  Though Ramya mostly ate unprompted, which is unusual for a meal time, it did take her an hour to eat one chicken drumstick (which she really likes to eat), and she didn't want to eat anything else on her plate.  She was very squirmy and would try to ask lots of questions to divert attention to get out of eating, which is her typical eating behavior.  We talked a lot about how I handle situations and the kinds of verbiage I use.  She said that the words I use are good and to keep it up.  An example of this would be talking about food with Ramya.  I will say things like, "I know sometimes it feels hard to eat, but eating is very important.  Your body needs healthy food to grow and learn.  I love you very much and it's my job to make sure you are eating enough food to grow."  We do a lot of talking through things and she gets reminded often that my job, as her mom, is to keep her safe.  I tell her I love her very much and that I take my job very seriously.

She brought puppets and Ramya responded very well to them.  The puppets talked and asked questions, and Ramya interacted with them.  Based on her observations with the puppets, she said Ramya does not yet have object permanence, which is something I thought to be the case.  If I leave the room, she immediately comes looking for me or starts calling me, as she likes to have visual and auditory contact at all times.  She gets pretty upset at me if I ask to have privacy to use the bathroom.  She will maintain verbal contact me during times like that, but isn't happy until she has visual contact again.  Because I this, I assumed she hasn't yet developed object permanence.  This is another thing we talk through a lot.  I tell her mommy is always here for her, even when she can't see me.  If David and I are going on a date, we tell her that we will only be gone a short time and that we will always come back.  We play games like "peek-a-boo" and hide-and-seek to help her understand that not seeing us doesn't mean that we have disappeared. 

She recommended trying is not letting meal times go on indefinably, but instead, if she hasn't finished a meal in x amount of time (say 45 minutes or an hour), then she has to drink an extra protein shake to make up for the calorie difference.  We have a session planned again for next week and I am anxious to get some feedback about things we can be doing to increase our attachment and help with Ramya's emotions and meal times.  The plan is to continue in-home sessions for a while, and then switch to less-frequent sessions in the office.


This morning Ramya had her feeding therapy evaluation.  The therapist asked a lot of questions about Ramya's history and why we were in for an evaluation.  She then watched Ramya eat  some different foods.  I had brought in about 10 different kinds of foods, with varying textures; some that she loves, and some that aren't her favorites.  She basically said what we already suspected.  Ramya doesn't have any problems with chewing or swallowing.  Her mouth muscles work well, she's able to clear her mouth correctly, she can move food around correctly, and everything looks good.  She doesn't appear to have any sensory aversions to food either.  She thinks her eating issues stem from desire for control and lack of desire to eat.  She said her mouth may get tired after some time eating, but that's because she's choosing to take 1-2 hours eating per meal, instead of about the 20-30 minutes it should take.  She said she sees this behavior in kids sometimes, and it can be really hard, because there is just no desire to eat and no motivation, so nothing you offer will motivate them, which is what I am seeing at home.  She's going to send home some things we can do at home to further strengthen her mouth muscles and also recommended getting a chewy tube for her to chew on and build up the muscles, but that there is really nothing she can do therapy-wise to help her.  She did recommend getting a swallow study, just to make sure things are ok structurally, so I called the pediatrician and asked him to send in a referral to Phoenix Children's Hospital.  She also recommended heading back to GI if Ramya doesn't gain weight this time around, but shared my same concerns with our last GI doctor and recommended seeing something different.

This afternoon Madi had her second session of cranial sacral therapy.  It lasts for about 30 minutes and she loves it!!  Our OT, Danette, goes to this person for massages and the lady had told her she was looking to take on a few kiddos to help.  She's been able to help kids avoid rodding surgeries and other things like that in the past.  She was excited to get to work with Madi and help her with her tight heel chord, hip out of place, and scoliosis.  Madi does feel more level and looser once we leave.  I'm excited to see her body change while we work with her.  She usually works with a child weekly for a year.  I also talked with her about Ramya today and she is going to start working with her as well.  It hadn't dawned on me that she might be able to help, as Ramya is actually overly-loose and not tight, but she thinks she may be able to help Ramya too.  I'm excited to have her working with both girls!!


That's all the updates I have for now.  Tomorrow is a down-day for us, and I can't wait!  Have a blessed weekend!

The Kids Singing "Let it Go" from Frozen

The kiddos wanted to make a video of them singing "Let it Go" from the Frozen movie.  I think it perfectly sums up their personalities.  You have Conner, the adorable goofball who loves to have fun and be in the spotlight.  Next is Madi, my animated child who really gets in to everything she does and is quite passionate.  And lastly is Ramya, my fun-loving squirrel who is constantly on the move and  who has a personality that shines.  I sure love these kiddos; we have a lot of fun together!

 

 

Popping Wheelies Stickers

Tami, Madi and Ramya's physical therapist, brought us these cute stickers and I've been meaning to post about them.  I wish I had seen these when I was talking to Madi's class about spina bifida.  I would have loved to pass them out to the kiddos!  You can customize what you get so that they incorporate any adaptive equipment your kiddo uses.  Just thought I'd share!

 

http://poppingwheelieskids.com/

 

No Mom, I'm Not Going to Nap Today!

When I asked Madi if she wanted to nap today she yelled, "No mom, I'm not going to nap today!  No one is!"  and it was music to my ears!  Though we did have a little chat about telling momma no nicely, that little statement showed me that Madi is starting to feel better!  She also only complained about eye pressure once today.  She was happy, giggly, cracked herself up numerous times, and only had one melt down.  I'm so thankful she's almost back to normal!  Thanks for the prayers!

Our Wasted Trip to the ER for Madi

I am happy to report that today we wasted a trip to the ER!  I'm not being sarcastic either, I'm actually quite happy that it was a wasted trip and that she appears to be just fine!

Madi has been very off the last few days.  She is fussy, gets upset easy, is very tired all the time, is restless and not sleeping good, is eating but doesn't have her same appetite, keeps complaining of her left eye hurting (she has a VP shunt on the left-hand side), and is just not herself.  She hasn't had a fever, though, and no throwing up (except for once last night), so I started worrying about the possibility of shunt failure.  After talking to the neurosurgeon's office, we decided it would be best to go in to the ER and run a shunt series to make sure her shunt is functioning ok.  I had called while she was napping (she has been asking for a nap, which is so not like her!), so let her sleep a little bit longer and then headed down to Phoenix Children's Hospital.

At PCH we were admitted quickly and answered all the normal questions they ask.  Next they sent us for a big bang MRI.  They let me get in the machine with her, which makes me so very claustrophobic, but she did a great job laying still, and the test only took about 5 or 10 minutes.  She wasn't a huge fan of all of the random noises but really did wonderful.  Next we went over to x-ray to check and make sure her shunt placement looked good.  I asked them not to test her blood, since I'm not worried about anything other than shunt failure at this point, but did ask them to culture her urine, which came back clear. 

Our neurosurgeon, Dr. Shafron, came in shortly after we got back to the room and said her MRI and x-ray looked good.  Her shunt is still placed well, it's not caught on anything, there's lots of tubing left, and her ventricles look stable.  He said that what we don't know from the images is if her shunt is functioning well or not.  That's kind of the question right now.  While he was in the room, I got to discuss Madi's degree of scoliosis with him, which was nice.  Unless we have to see him sooner, we will follow up with him in six months after getting another set of x-rays, and then try, again, to figure out if we should de-tether her spine or not. 

The ER doctor said that there are a few viruses going around that they are seeing in the ER.  Madi's symptoms do not match what they are seeing, but they said that a virus could just be manifesting differently for her.  The other option is that she is in the early stages of shunt failure, where her shunt has not failed yet, but is also not functioning well. 

They gave me the option of staying the night for observation or going home.  I opted for going home, but have Madi in my bed so I can keep a really good eye on her.  She still sleeps in my room anyhow, because of her seizures, but usually sleeps in her toddler bed.  She was starving by the time we left, as he had been NPO (nothing by mouth) for so long.  I had brought her a granola bar, but it just was not enough.  After we left the hospital I took her to Whole Foods so she could get the gluten and dairy free pizza there that she loves.  I ate my veggie sandwich, she ate her pizza, and we were both happy girls!  She didn't finish her pizza, which again is odd for her, but she was a happy girl!

I'm praying this is all just a virus and passes quickly.  I'm thankful that we are home and that her shunt most likely is just fine.  Hopefully she will improve quickly and be back to her normal self soon! 

So happy with her pizza!! 

 



 

She requested to fall asleep laying on me... such a sweet snuggle bug!

 

Conner's Lip Tie is Fixed!

In my last post I shared we had an upcoming appointment for a consultation on Conner's lip tie.  On Thursday we went in for our consultation, and actually ended up correcting his lip tie right then! 

We saw Dr. Brad Briggs of Briggs Family Dentistry and he was amazing with Conner!  He explained what would happen, numbed his lip, showed him the laser (he used a water laser so that it didn't get hot), and instructed him to tell him if anything hurt.  He also let me back with zero arguing, which I really appreciate!  Conner laid still and wasn't even nervous.  He raised his hand once to say he was uncomfortable so Dr. Briggs stopped and numbed him once more.  After that it didn't hurt him again, and Dr. Briggs was able to finish.  The whole process took less than 10 minutes.  He didn't need any sedation at all!  Yeah!

We have been putting coconut oil on it, just to make sure it heals well, and it hasn't bothered him at all.  He's been doing a great job taking care of the area.  He is very proud that his lip tie was fixed and is practicing saying words he used to struggle with.  He also shows off where the "laser fixed his lip" and makes sure everyone sees it.  I'm very proud of him, and so relieved it went so well!

 

This is the only "before" picture I had, which is not a good picture at all.  It's hard to see, but the little flap of skin that goes from the gums to the inside of the top lip actually goes down to the bottom of his top gums, right down to where the teeth start.  When his adult teeth grew in, you could see the flap of skin starting between where his teeth were, leaving a little gap between his top two teeth.  It was always very tight between his lip and top gums so it was harder to pull his lip up.  Food always got stuck on his top teeth because the area was so tight.

 



 

 

 

This is right after the procedure.  No pain!

 

 

And here is an "after" picture of his lip.  As you can see, it's healing up quite nicely! You can also see it's so much loser and stretches up nicely now.  It doesn't hurt him at all either!  Yeah!