Bad Blogger Mommy

Well, sorry folks. I don't have a whole lot to report. We are officially starting in on all of our fall doctor's appointments, so right now we are going to Chicago and/or Milwaukee or Peoria at least once a week.

We haven't been doing a whole lot. Lil Man has been kind of puny. I am choosing to believe it is because he has two teeth trying to squeeze into two tiny spaces. He has been drooly, and not very active as of late. We can't really put our finger on it, although he has started to sweat a lot and get clammy the last few days. We'll wait and see.....

Last week, we met our new pediatrician. We love her! She was able to call down nutrition for a consult while we were there. She really "got" Lil Man's issues, especially with his immune system. She said that she was going to flag his record so that unless it is an emergency, they only schedule us on days when we have another appointment. She said a minimum of two appointments or wait, to limit his time sitting in the doctor's office. FINALLY! We are also going to see a new pulmonologist at some point. While we love Dr. Rao in Milwaukee, it will be nice not to have to be in the car 24 hours for an appointment (up and back).

Tomorrow we go back to Chicago to La Rabida for wheelchair clinic. We haven't had his wheelchair adjusted in the two years since we have had it. :( He hasn't gained any weight, just grown in length. It is to the point now where they need to handle it. He is also getting an OT eval, kind of. The OT is going to be in wheelchair clinic. She is going to do some short evals on him to decide how to proceed.

Next week, is a big one. He has a swallow study at University of Chicago, Comer in the am and then we go to Rehab Institute of Chicago for another OT and Speech eval for Augmentative Communication Therapy! Whew!

The 15th we go to Milwaukee. We will stay overnight on that one. He sees Dr Rao (Pulmonologist) and then our big Immunology visit. We are eager to see what they come up with.

In the mean time, we are getting ready for the Buddy Walk. Anybody who is interested in walking with Christopher's Cowpokes, please let me know by Sept 15th. That is the last day to register to get a free T-shirt. Registration is free this year. I will do another post for that one in a couple of days.

Otherwise, we have big, exciting changes coming up. Sorry to leave you in suspense, but I just don't have the energy to post about it now and some of the details are not ironed out yet. More on this later.

Hugs!

Steph

Chicago Part II

OK. I had half of this thing typed up this morning when huge thunderstorms rolled through. I had to hurry and shut down the computer and get Lil Man off of his feeding pump with all of the lightening bouncing around. So here we go again.....

First, I want to update on Stellan. He is home now, but still guarded. They were finally able to get his heart out of that wild heart rate (over 200 for 5 days). They know that he has to have an ablation(laser surgery) to destroy an extra electrical system that he has in his heart. The problem is, if they do it right now, it is too close to his regular one and they will destroy both. This will make him dependent on a pacemaker for the rest of his life. Obviously, this is something they want to hold off for as long as possible. He has become resistant to all of the regular drugs for treating this, and some he was not metabolizing at all. In short, he was on toxic levels of lots of drugs and they were shutting his system down. They have found a combo that is working for now.

OK. I am going to ask for prayers for Jaxson again. Poor little guy. He has some heart issues that need to be surgically repaired. The only place that will even consider doing the surgery is Boston, and they seem to be dragging their feet. I know they are busy, but pretty soon, he will be too sick for surgery. In the mean time, he has other procedures that need to be done - and they can't be, because of his heart issues. Then, his Mom thinks that he aspirated the other day. The LAST thing he needs is pneumonia! He had a really rough day today and was on over a litre of oxygen. Let's pray that things get moving in the right direction for them - sooner, rather than later. Thanks!

OK, now for Chicago, Day II:

We woke up and got the van loaded and headed out to La Rabida Children's Hospital. If you have never been there or heard of it, it is a small children's hospital RIGHT on the shores of Lake Michigan. They do long term rehab and critical care. We absolutely love going there!

The doctor that we saw was Dr. Lisa Thorton. She is a physical rehab doctor. Super lady! We had an interview with her nurse and "highlighted" Lil Man's medical history. About 30 minutes later, we were FINALLY done. :) Then a resident came in to go over it all again, then Dr. Thorton comes in with the rest of the entourage. If you have ever been to a teaching hospital, you know exactly what I am talking about. We went over the medical history again, and she was impressed that he is dong as well as he is. She was VERY impressed with the fact that he is not trached and vent dependent.

However, she threw in another possible explanation for some of what is going on with Lil Man - Muscular Dystrophy! or some form of it. She is wondering if he even HAS muscles in some areas of his legs and arms. She thinks that this would account for the appearance of 'failure to thrive' while not really having anything wrong with his GI tract. She mentioned an MRI, but I think that will be decided when we go back to see her in 4 months. So far, she has ordered physical therapy (PT), occupational therapy (OT), his wheel chair to be re-fitted and possible walker, I am sure braces (AFO's ) will be ordered once we have the PT eval, and a referral to Augmentative Communication Therapy - I THINK at Rush hospital!!! This is therapy centered around a communication device, which they are also referring us for! We didn't even know they HAD that. We just thought Speech therapy covered it. YEAH! She didn't mess around.

There was also another lady, whose name I have forgotten now, but she was all fired up about the school district. We have lawyers! she was proclaiming with her fist in the air. :) While that was great that they are willing to do this for us, we just don't have the time or energy to fight the district for therapy that they aren't willing to give. Even if we won, which I'm sure we would, the quality of therapy and lack of well, everything, would severely impact Lil Man's therapy. If we go to Chicago, this takes place in the hospital...should something go wrong..... we don't have to go far for care. Also, the docs can go right down the hall to ask questions about progress and evaluations. They don't have to wait weeks for written reports. We have wasted 2 years with the school district. Lil Man has shown us that he is ready for new things and THAT is half the battle.

So, after the appointment, we planned to head on home, but it was such a nice day. I FINALLY had my camera working and I wanted some pictures of Lil Man down by the shore. He wasn't much into it. :) Every time we go to La Rabida, we end up doing something we hadn't planned on. We wanted to find somewhere nice to have lunch and decided to take a drive up Lake Shore Drive. Of course, we got lost and ended up at Navy Pier. What the heck, we decided to pull in and see what we could see.Here is the slide show of the photo shoot. :)

Make an on-line slide show at www.OneTrueMedia.com

It was busy, but it was outside, so we felt ok about taking Lil Man. Word to the wise - DO NOT take a large car to park in the parking garage at Navy Pier. You will NEVER make it! The parking space was barely big enough for our mini van! There were no handicap spaces. We never did find a nice place to eat, but we DID take a speed boat ride down the Chicago River and out on to Lake Michigan. Lil Man LOVED it! Well, the speed boat part. The architectural tour up the river was really nice, but he was asleep for that. Then we went out onto the lake and took pictures of the Chicago skyline. Then the boat took off. It was fairly warm on land, but not on the lake. The water was a little choppy, and I thought Lil Man would freak going 35 mph out there. He had a blast - just laughing everytime the boat bounced. Here are the pictures of the tour - warning - it is kind of long. :)

Make photo slide shows at www.OneTrueMedia.com

For those of you who don't know, I used to work for a lady who sold stained glass. I didn't learn the really fancy stuff, but I know enough to be dangerous. LOL! At Navy Pier, there is a HUGE stained glass art exhibit/museum. We didn't get to go trough the whole thing, but I did manage to get pictures of some of the Tiffany glass. Here is another short slide show if you are into that sort of thing.

Make an on-line slide show at www.OneTrueMedia.com

After all of that, we had to drive home. We didn't get home until about 1 in the morning, but we had such a great time!

We have also been on again off again with a new nurse this week. We thought we had one for a few hours, but she decided she didn't want to drive from Rantoul. I don't blame her. For the locals, if there are any RN's or LPN's out there who want to pick up some extra hours - please get in touch with me. Even if you don't come to work for us, nursing agencies are begging for people to work. In our case, we would be happy with another 2 nights @ 10 hours. That would get us closer to what we are written for. Our poor weekend nurse is the last woman standing! LOL! We love her, though, and wouldn't trade her for anything. :)

We have also had pediatrician troubles. We don't use our pediatrician for much. We have too many specialists, and I don't need a doctor's visit to tell me to take Lil Man to the specialist. So, when we first started with this doctor, I explained, our relationship would be mostly paperwork and physicals. Lil Man is in one program requiring doctor's orders for the nursing at least every 60 days, or when things change. Then we have yearly renewals, etc. Well, our pediatrician left in June. I called the office concerned that they wouldn't be able to do the paperwork....Oh, no problem they said. Right. Last week, I get a frantic call that the Nurse Practitioner doesn't "feel comfortable" signing the form for the nursing orders. They haven't changed in two years. That was the only form she didn't want to sign! I still don't really understand why she felt comfortable signing orders for medical equipment that she didn't order, but not nursing hours?!?!? According to our waiver, if the paperwork isn't signed and the nurses can't come in, Lil Man is required to be hospitalized. Exactly what he DOESN'T need right now.

So, long story short, I had a discussion with the NP and explained that I didn't "feel comfortable" counting on them if we really did need something important if they can't sign a form they have been signing for two years. I also found several that SHE had signed in the past and faxed them to her. She knew it, she just didn't want to do it. I told her I would be in touch with the address on where to send his records, so now they have their noses out of joint. Oh well. We are waiting to hear back from La Rabida. We are going to be up there several times a month anyway, and they already do this for other children. Why reinvent the wheel?

Well, hopefully, I will have more to update towards the end of the week. Lil Man has been feeling puny since we got back from Chicago. I think a lot of it was fighting that infection in his nose. It really took a lot out of him. I am wondering if a little is depression. We went to Mom & Dad's yesterday and he was SO excited to get in the truck! We are going to try to get out in the pool this week. It is supposed to be in the 90's and humid - so we'll have to see. We STILL haven't been able to get in there. I will try to get pictures - of him, not me. :)

Hugs!

Steph