Things to Take Note of

Ok - warning, this is mostly for my medical notes, but as usual, you never know when it might be useful to someone else! :) Plus, I am finding going back in my own blog to be very helpful in tracking how Bug's symptoms have played out over the last 1.5 years.

First off, Bug missed her stomach medication on the 6th. She had it again on the 7th, and has been on it normally since. Starting on the 6th she started having sleeping problems because of her tummy hurting. I figured it was reflux, but wasn't sure if it might be stress due to her upcoming GI appointment.

The stomach problems have not stopped since, although I personally noticed that she was falling asleep more easily again around the 14th. Her sleeping patterns have not returned to normal, she is still taking a long time to get to sleep but that would make it around 11 vs the 2:00am that was happening the week before.

We saw our GI Tuesday and Bug did AWESOME! She had no anxiety during the appointment, which was such a relief to me. We didn't do anything invasive, but if you'll recall she wouldn't even get her weight taken in the fall. So this was a huge step forward for her. :)

Since seeing the GI, she is still complaining about her stomach hurting and is still having problems falling asleep. In the mornings she is telling me she hasn't been sleeping at night, even though I know she has. As this continues, I am left scratching my head as to why she is so off right now. Looking back at last years blog this was the really bad time for us too. What does that mean? I haven't figured it out yet.

Also worth noting is that last night she was laying down watching a movie in her brothers room and her hands broke out in a rash. Similar to what happens on her mouth and legs. She was not eating at the time, but had popcorn about an hour before. The rash was not located anywhere else on her body. It was painful but not itchy. I did take a picture but haven't uploaded it yet. By morning the rash was faded and not hurting like it had been the night before.

In addition, today we started her on Zantac right before bed. It was her first dose, but the GI said that it acts immediately. If that's the case I'm not too hopeful since she was still up at 11:00 with stomach problems. I'll give a full GI update in my next post, I just don't have the energy to do it tonight. But the gist of it is that if adding this doesn't work, surgery is her only option. Talk about stressful!!!!!!!!

Anyway, that's all I have in me for tonight. :) More later!

Silver Ring Splints - on a Child

This is just a really quick post to share the picture I took of Bug's Silver Ring Splints (SIRIS) . Keep in mind she is just 7 - so these are tiny rings! :)

They are so beautiful though - and have been wonderful with all of her swelling finger issues. I just have to say again, if your child has hypermobile fingers, do not let anyone tell you that they won't wear splints! Bug has worn them since 5, and now at 7 is in silver instead of plastic. She knows and will tell you herself how much they help her!

Moving Along - Done with PT!

As usual, it's been awhile since I've posted. We had a great Christmas spending it with Grandma and Papa. Both of the kids had fun, and we even kept up with Bugs PT and relaxation exercises. I was pleased with that. :)

Bug has really enjoyed working on her mini-tramp. I got one with a bar on it to make sure she has the extra stability or something to grab if she needs it. Several of her PT exercises are done on it, and she likes to just jump in general. It's great - I wish we had gotten one sooner! Her face just lights up when she's on it. Plus, I got a great deal from and paid only $59 and no tax or shipping. If only I could get a Bosu ball for a deal like that!

Grandma kindly sent her Bosu ball back with us for a few months since she currently isn't using it. It gives me a little more time before shelling out another $100 on PT equipment. We are also still looking for a 4 lb medicine ball that is gel filled and smaller than 8 inches. I thought it'd be easier to find than it has been, but part of that is because online a lot of places either don't say if the ball bounces (which is what we want) or what the diameter is. The PT told me I could e-mail him the ones I found and he can help me, so I think that's what I'm going to do if I don't have better luck.

Speaking of PT - Bug graduated Friday! No more PT unless something changes. Her hip has not been a problem since we've been seeing him, so our directions are to keep doing PT nightly and continue to work on her sleeping position to try to make sure we can keep her legs from being up in the air at night. I'm SO happy about this - because even though Bug likes PT, neither of us wants to drive to Iowa City anymore than we have to! This is one less appointment, yippee! So now we're done with OT, and PT for the moment, and I am SO THANKFUL!

We also did therapy Friday, and talked about our upcoming GI appointment on the 15th. This is the first "real" doctor appointment since her meltdown, and I'm nervous. We decided that what we are going to do is meet with our therapist 1/2 hour before the appointment, and the therapists will attend the appointment with us. I am contacting the GI ahead of time and requesting we not do any invasive procedures and let him know that we are planning to have Bug leave the room before we talk about what next, what if's, and so on. At this point we are just hoping to get her in the door and to cooperate with a basic appointment. If we can achieve that, we'll go from there.

The therapist is going to look into how we can have Bug removed from the room, if Child Life can be ready and well aware of her case. In the past Child Life has not been able to cope with her, they are used to children who are afraid because they don't know what is going to happen. Not kids who know darn well what's going on and do it often, and are afraid. They are also going to see about making sure we do not have a Child Life specialist that we've had in the past, both for Bug's sake as well as because I think they will be biased against her. That's what happened before, and after all of this therapy I don't need someone judging her on the past and making things worse.

After I hear back from the GI, I'll pass that along to the therapist(s) for them to plan based on what our appointment is going to be like. My biggest fear is that we're going to need another endoscopy - sometime soon. I'm sure she'll need one again, but I just hope it's not for awhile. However, even though I know the medicine is helping, she still is sleeping on a huge pile of pillows, requesting to snack a lot (because her tummy is starting to hurt, she says if she doesn't eat right away it starts to hurt bad) and can't eat a ton of foods. So with that in mind, I am worried. On the flip side of the coin, she's not missing school for feeling ill, and she isn't having any throw-up burps. That's all good. So I'm going to cross my fingers that maybe we'll be in the clear for a bit longer.

On a side note - the silver rings splints are working out nicely. A couple are too big to where on non-swollen days they will slip almost all the way down her fingers, but most days they are just loose around the joint where they belong. The days they are falling down we just don't wear them. The others are also a bit loose, but not nearly as bad. I still need to take a picture and update it here, they are truly beautiful!