NG Tube Free

Sorry for the long pause in updates. I was very much inside my own head right before Charlie's Gtube surgery. I was so nervous but she handled everything beautifully. While we are still healing and trying to get past the pain and the adjustment to Gtube feeding, things are going relatively well. Its nice not having the stress of the NG tube but Im not quite there on being comfortable about the gtube....she is still hurting, wretching, etc. I feel like once we get past this, things will be better.

Once I find out what anesthesia they used I will post it here. They said I needed to go through medical records to request that information. She used torodol and tylenol for pain. We are still on tylenol for pain but i feel like she can start weening off here in the next few days.

The Countdown

The final countdown to Charlie's surgery has begun. 6 more days. I'm so nervous, excited, etc. It couldn't come soon enough. Now its to the point that even with mittens on, Charlie is still managing to pull the NG tube out partially. So now if I am not watching her, I have to swaddle her arms down so she can't get near her face. It makes me feel so bad because she HATES to be swaddled. Although after a few minutes of being really upset, she seems to calm down.

I also have been tinkering into essential oils to help calm her down. I cut some lavender oil with jojoba and have been putting it on my hands when I do anything with her and also massage her feet with it. I can tell a big difference. She slept way better last night (not as much tossing/turning) and when her teeth are bugging her, her tantrum episodes are way shorter (from an hour and a half to maybe fifteen minutes).

Her PT went fantastic yesterday. The physical therapist said she has fit a month of development into a week and is blowing her away at how fast she is progressing. Now she can roll super easily from back to front and has some awesome strength building in her neck. She tells me we may see some stalling once she has her surgery because she will be hurting for awhile but I hope she keeps marching forward like she always does.

We have a meeting with the feeding specialist during her OT today. I am anxious to see what they say about what they think is going on with her feeding. I'm lucky to get her to take 5mls and once a day we typically get a better feed of about 20-30mls. This is such a setback from where we were (she was taking about 2 ounces before) so obviously something is going on. They want another swallow study. I really hope she isn't aspirating. One more thing to worry about.

Thats pretty much it for the update. Hopefully we can get some answers soon. I cant wait to take her NG out for the last time....get that tape off her face and be able to see her entire face...been way too long.

Finally, Non-Irritating Tape Remover. I Must Share the Good News.

When we were admitted at the hospital last time, Charlie had a pretty bad reaction to the adhesive remover they used. She broke out in rashes. We have tried a few different kinds. The wound care specialist came to look at her blisters and said "You have to use this" and brought us a can of "SensiCare": SENSI-CARE Sting Free Adhesive Releaser Spray, 50ML. It seriously is amazing. You spray it on and the medical tape comes right off. I have actually changed the tape on her face without her waking up with this stuff.

I thought I would share this because I know a lot of our kiddos have to have medical tape on a lot and its not only irritating to the skin but I know it scares our kids. This has been a lifesaver for us.

Added Links To Supplements Page

Hey all! Charlie is doing great. Countdown 2 weeks to Gtube surgery. Also I have been starting to take her supplements in a little experiment to see how I feel. So far I feel pretty great, I have been taking ubiquinol for a little over 2 weeks and the other supplements for a few days. I have added links to the supplements page on which ones I am currently using if you are curious. There is debate on whether carriers can have mild symptoms. Since most of the side effects of taking the supplements are pretty mild, I thought I would give it a shot.

Here is a great video of Charlie playing with my cellphone:

Busy Busy Busy

Its been a crazy few days. Charlie is back into her physical therapy schedule and we have been trying to just adjust now that we are back from the hospital. Hospital stays seem to throw everything off kilter for awhile. The housework piles up and it takes about a week to get caught up.

Charlie is doing absolutely fantastic. Her physical therapist is so pleased with her progress. She is now grabbing things, trying to roll over (shes SO close) and is tolerating (maybe even enjoying?) tummy time now. We still have the issue where she throws up every. single. morning. It breaks my heart because she doesn't even cry much anymore. She just throws up and groans. We are experimenting with some nausea/vomiting meds but they don't seem to help. I really hope the G-tube and continuous night time feeds help. We have opted not to get a fundo (its surgery on the stomach that prevents throwing up) I have hope that we can get this under control with reflux meds or at least she will grow out of it when we start solids.

Life has been better. My amazing husband gives me "Mom's day off" every Saturday where I can go

out and do whatever I want. I usually do something active and then go grocery shopping. Today I may go hang out with my amazing friend Irina. She is just such a warm, caring and selfless person. Here she is with her amazing adorable puppy "Bear". She has definitely helped me so much with what has been going on. I also have gotten back in the gym which helps my mental well-being. I'm excited to get "me" back. I feel like I can be a much better Mom when I'm more comfortable in my own shoes....and pants.

For once I feel slightly better about the future. Maybe this is doable. It's going to be hard, but I always have been the type of person to choose things that were difficult anyway.

Hospital Stay

Sorry it has been awhile since the last update. Charlie was in the hospital for a few days due to a stomach bug. She threw up 5-6 times in the morning and just was not acting like herself so off to the ER we went. This time was so much more smooth than the first time. I felt like I knew what I was doing, the doctors and nurses knew us more and we were able to get D10 without a big fight.

Charlie was already a bit acidonic just from throwing up a bit and dehydrated. I'm glad we went and it was just 3 days which is the shortest hospital stay yet. Lets hope that she is good now and we can just remain home until her surgery in July for the gtube! I learned so much from our first hospital stay, the first time really is the hardest. We also got a lot of the same nurses as we had last time which helped not having to explain everything over again. The nurses we got were amazing too. Especially  two named Ashleigh and Tinsley who really made life a lot easier while we were there.

Nurses can make or break the stay and this was the first hospital trip where I had to leave for a bit to run home and take care of the dogs. I was a nervous wreck leaving her but each time I came back and she was sleeping comfortably. Tinsley even tucked her in and turned on a channel on the TV that played lullaby music. Very sweet when people do little things that make a big difference.

Lets hope she is doing better. She just threw up again this morning, but a morning puke session is not out of the ordinary for us, lets just hope that it stops there.

Sick Baby

Sorry it has been a bit in between posts. I was dealing with a sick husband and then sick baby. She caught my husband's sinus infection and it has turned into a bit of a stomach issue as of this morning. We are just waiting to see if it turns into anything worse. She threw up a few times this morning but so far has held down her 2nd bottle. Gotta keep an eye out. Its always a worry, making sure she is breathing right, acting right, etc.

We are also waiting for her PT who should be getting here within the hour. We get therapy 3x a week which is amazing. I hope this early intervention really helps her catch up physically in her development. Shes gotten stronger and stronger and we are so excited to keep working with her so she gets even better.

With her being sick and fussy, I have been a bit on edge. I suppose the looming G-tube surgery and all the stress that goes along with it has me more anxious than usual. I have become really close with another mom who has a daughter with VLCADD and she just had Gtube surgery and everything went very well so that makes me feel better. I just can't wait till its all over with and we can breathe a little better (and sleep better too).

Keeping fingers crossed that she does not throw up anymore today and we do not have to call metabolic and go into the Dr.