Wednesday, October 12, 2011

So it's going to be THIS way.....

So I am finally getting around to updating on our bazillion doctor appointments we had going on the last 3 weeks. It has been a whirlwind of stress, information and just plain crazy/busy.
First appt I am going to update on is Kaitlyn's neurology appt. She had that two weeks ago. She was diagnosed with Hypotonia. That means Low Tone. She isn't the worst case out there, but enough to cause some problems with her development. As of today she still cannot sit up on her bottom, but can kneel, crawl, pull to a stand. Frustrating, huh? Yep. But her tone issues can actually explain all of her problems. Kids with Low Tone have weak muscles basically. So it can be the reason she has reflux so bad... the muscle used to close off and prevent stuff from coming up isn't working right. Her bowels have problems because the muscles aren't able to effectively push things through her system. And her oxygen issues can be her lungs not working completely as they should and her oxygenation isn't as good as it should be. Or something to that affect. So we have had some blood work done and are waiting for results. She also is going to have an MRI. The doctor wants to see if they can find out why she has low tone. He warned that they don't always find a reason why. But we hope to get some answers soon. In the meantime we added physical therapy to help her with the strength and she has also been fitted for some braces for her feet to help with her over-pronation. (her feet turning all the way out, and curling under so she basically stands on top of her big toe). So we will see what we find out.
Kaitlyn also had another GI appt last week. Her doctor is not too pleased with what she saw. Kaitlyn took a dive on the chart for her weight. A pretty significant drop. She not only didn't gain, or even maintain her weight from her appt on August 4th, but lost 4 oz. So we are going to get more aggressive with the options. We are looking at doing a PH Probe test (which means an overnight stay in the hospital) to measure her acid levels and if she is aspirating. Depending on that and how the next 8-10 weeks go, we might be looking at surgery for her. Boo. Not thrilled about that. So I take her back on November 7th. I am a tad nervous about it.
And if all this wasn't enough..... she caught a cold last week and is back on oxygen. Not only back... but on higher amounts than she has been on in months. Sad! I took her back to the doctor today and he is pretty sure her tone issues are playing a big part in what is going on. Her cold is mild enough she should be fine. But he said her lungs just aren't doing a good enough job working to handle the extra stress the cold has and so her sats dropped. So we are looking at probably another 3 weeks on 24/7 oxygen and then we will leave her on it for nighttime. It is looking likely she will have to continue on the oxygen during the night through the winter and every time she gets sick we are looking at going back on the oxygen 24/7. He is really concerned about her and the flu season, but even more so because of RSV season. He scared the crap out of me today. So........ we are officially going into isolation and seclusion time until next spring. Yay. So excited. At this point I just want to make it through the winter without any major issues. But Kaitlyn is handling the oxygen just fine. She just goes and goes and it drags behind her. Poor girl.
Now for Josh. What do I say about my Josh? He is having a lot of struggles right now and thankfully we are in the process of doing as much as we can for him. He saw the Genetics doctor, Dr. Rope, last week. It was a great appointment. He was able to get another good look at him before he decided what genetic tests to order. I am waiting to hear back from them that insurance gave the green light. Dr. Rope spent well over an hour with me going over every single tiny thing about Josh and he once again told me how complex Josh is. But one thing that we are going to do is get Josh screened for Autism. I will do a whole other post about how and why this has came about, but I won't get into it today. Just know that there is a lot of things going on I have been pretty closed off about. But I am ready to face everything with all of my kids now... nothing is scaring me too much anymore. But Josh does have medical problems that don't have anything to do with autism. So there is much to be learned about him still. Hopefully in the next 3-4 months we get some answers.
If you are still reading... I am really impressed!!! I haven't been taking any pictures with my camera... I always use my phone now. So I finally decided to just post a couple pictures from my phone of Josh and Kaitlyn I took in the last couple days. Both pictures about sum up how these kids feel about all that is going on right now........:)


Annie said...

I am sorry that this has been such a struggle for you, but I am happy to hear that at least they know the cause of some of Kaitlyns problems and can come up with solutions to help her.

Chantel and Brian said...

Sad pictures. I'm hoping that future appointments can bring some more answers. And I hope some answers can come that don't result in surgery for kaitlyn. That would be NO fun!!!

Tanya said...

of COURSE I was still reading!! I am interested to see what you have to tell us about these sweet kiddos and what is going on in your life. Tell me when I can call and I will. (((HUGS)))

Brittany said...

Prayers for continued answers and for strength. This is a LOT, but you can do it.