Winter 2013-2014 Pneumonia

James has had a fairly healthy winter. Unfortunately a few weeks ago he came down with pneumonia. After 2 days of fatigue, fever and nebulizer treatments I took him in to the doctor. I honestly thought he was going to be admitted to the hospital, but he lucked out. His O2 sats were a little low at 93% but he was holding steady there. We increased his nebulizer treatments, re-started his asthma medications, started an antibiotic and a steroid. After 3 more days he finally was feeling better. We were fortunate enough to use Sanford's new Same Day in which you get to see your own physician on the day you call. I don't doubt other physicians but when it comes to James it really helps to streamline his care when we see his own physician. Normally I think most physicians would've asked for and x-ray and maybe labs but our pediatrician decided that no matter what the x-ray would've shown he was going to treat it aggressively anyway. James has a poor history of doing a very good job of compensating during illnesses. Which is good, but unfortunately at some point he can't compensate anymore and that's when things go south very quickly. We went for a follow-up a week after and the pneumonia was gone, but unfortunately his O2 sats were still only at 92%. We did an x-ray (which is not the easiest experience at Sanford SW Peds). The pneumonia is gone for sure but he saw a lot of inflammation which means that James' asthma isn't well controlled. We increased his Pulmicort and go back in a month for another check. At that same check-up we'll be checking James' weight. I think at long last our years of avoiding a G-Tube are over. If James' shows no weight gain by that appointment, it's time for a G-tube. Andy and I have mixed feelings on it, but we'll do anything that James needs.

Is it inevitable?

Today was James CTC clinic (Coordinated Treatment Center) where he sees most the providers at once. One of the good things/bad things about it is that we don't always see the same doctors. I think seeing the same one is nice because they know his history. The nice part about seeing different doctors is that we get a different point of view. They are usually pretty good about reading up on his history at CTC clinics because they know these kids have lots of things going on.

Back in December we were discharged from PT because we weren't seeing any progress. So today we actually got assessed by a PT. It sounds like we'll be going to back to PT and this we'll be going 1-2 times per week. Hopefully we'll go twice. I've been noticing how tight James' hamstrings have gotten and I'm quite concerned that he'll pop a tendon or that he's in pain. I can barely stretch him and it's always unpleasant for both of us. So hopefully a more aggressive approach to PT will help with those hamstrings.

We got to skip seeing Speech and OT since we see them weekly.

We saw a new physiatrist (physical medicine/rehab) doctor today. I liked him a lot. He was pretty happy with James and his new AFOs (we got them last Friday). We are going to head down to Healthcare Accessories and get his wheelchair assessed and see if we can adjust it for some growth and hopefully at the same time we find a way to keep his hips in the chair where they need to be. He tends to push his hips out resulting in his whole body slumping down in his chair = not good. We're also going to try and do some botox in James' hamstrings and see if that helps his extreme tightness there.

We chatted with the social worker a bit and saw the Pediatrician. We saw a new one today and liked her lots. She was pretty happy with James and helped facilitate some communication with the audiology department to get things moving on the cochlear implant front.

Dietician.....my least favorite. Wouldn't you know little James lost a few pounds again :( Losing weight isn't really an option for James and of course they discussed a G-Tube again. They are giving us another goal-by his 5th birthday (April 2013) the goal is 30 pounds-and stay there. We'll see how that goes but I feel like we've had this conversation over and over for the past 2 1/2 years. We are constantly worrying about James' weight. I get pretty anxious when it comes to weighing James and most the time I don't really want to know. I had thought we'd been doing pretty good and here we'd lost 2-3 pounds.

Overall I guess not a bad day. We've had worse. Although if you were to ask little Elliot he probably would've told you that he was bored and couldn't wait to get out there. He sure is a trooper going with to appts all the time. For the most part he behaves and plays pretty good. But as you would expect from a 2 year old boy, he gets pretty bored being cooped up in waiting rooms.

Just a reminder that you can order Pizza Corner Pizzas and Butter Braids through July 20 and they should be here August 2nd. We'd like the money right away if possible. Thanks again everyone for your support!

Weight Gain!

This past Wednesday I took James in for a weight check. His dietician called last week and thought it'd be a good idea just so we know where we're going. James' last weight was done in early November and he was 23.4 lbs. On Wednesday he weighed 24.8 lbs!! I was so proud of my little boy! He's almost met his goal to be at by May. In the past couple of months we've been working extra hard to get more calories into James. We were able to get more Pediasure 1.5 from the WIC program enabling us to double the amount of that which is about 80 more calories than the regular Pediasure. We've also been added about 3 scoops of Duocal to his Pediasure which adds about 25 calories per scoop. Hopefully we continue this trend and we can keep avoiding that g-tube. Not only is it to avoid a g-tube, but we need to make sure James has enough calories to be able to grow and stay healthy. Looks like he's doing good on the weight gain front for now but we definately don't get to slack off...this will probably be a continual thing for James for many years to come. We just have to hope and pray that he's able to do it all on his own and thank God for he's able to do!

Small but Amazing

James has been a pretty small kid for quite some time now. Doctors started becoming concerned over his height, and weight about 1 1/2 years ago. We are constantly struggling to get him to take in as many calories as we can. He gets his primary nutrition from a bottle. He drinks mostly Pediasure and Pediasure 1/5 (same as Pediasure, it just has more calories). We do try to get him to drink some juice and water too. We usually put his Miralax in there to help keep him regular-he often becomes constipated to a point where it can become painful for him.
In the past we have had doctors approach us about getting James a G-tube. A g-tube is a feeding tube that would go directly into James' stomach through an opening in his abdomen. Of course this not something we've ever wanted for James. First of all, James loves to eat and we're worried that he would develop an even stronger oral aversion if he had a G-tube. An oral aversion is where people don't want certain textures in their mouth, or sometimes they don't want anything in their mouths at all. From what we understand we are extremely lucky that James didn't develop an oral aversion when he had his trach. Apparently that is very common.
Lately James' weight has been concerning even me. In the past it's never really bothered me very much. Andy and I are not large people and weren't big kids either. My siblings aren't big and tall and neither are my parents. My mom tells me that we were all small as younger toddlers. However, to me lately it seems that James is not eating as much as he used to. We've always been encouraged to get more calories in him as well as more fluids. It's a pretty hard task. If James doesn't want it, how can we force him to drink it?!
I was able to speak with a nutritionist today that we'll be working with from now on here in Fargo. He assured me that although James is very low on the growth charts, that he has a very appropriate BMI and his height vs weight it very proportional. She did say that even though some kids have a normal BMI that they can still be "too skinny" or "too large". She'll come visit us on Monday while James is in OT/PT and take a look at him. She'll also do a caliper test and see how much he has for fat stores. I think that'll be interesting to know.


On another note, I hope to get some pictures up here this weekend so you can all see how beautiful James is! This weekend we're going to my hometown to spend some time with family. My cousin is having a birthday, so we'll be celebrating. I'm sure our kids will have fun. We'll be out in the country with lots of room to run and play and James will have lots of kids to watch and laugh at, not to mention his Grandma to snuggle with.