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........:)

Monday, October 3, 2011

A peak into my world....

I am doing this post for me mostly.... to document what I do on a daily basis. Also if anyone out there wants to know if you are alone in this special needs world, I hope it helps you to understand you are NEVER alone.

But first I have to admit something here. I have to make this official. I know it probably means nothing to anyone else, but believe it or not, I have struggled with this and coming to accept what it means.

I am a mother of three special needs children. There. I said it. Now we can move on:)

I am not going to point out minute by minute of what I do, but blocks of time during the day.

I usually get up on school days around 8:30. I know... I am spoiled. I have an amazing husband who gets up and gets the three boys off to school for me. I only sleep this late because I am the one who is up with Josh and Kaitlyn during the night. Some nights I am lucky and only get up like 3-4 times a night. The reasons I get up? For Kaitlyn it is because her reflux bugs her and night and she hurts, or she actually spits up and cries. Also there has been some teething going on. I get up with Josh for a number of reasons. Mostly it is his feeding pump beeping during the night. Sometimes it is because he is just wide awake and won't sleep. Sometimes it is tummy aches. A bad night is when they are both up and needing something together, or trade off and as soon as one is done and settled and I climb back into bed, the other wakes up. Those nights I get around 4 hours of sleep, give or take. Not fun. So you can see why I am being spoiled to get to sleep until 8:30 these days.

Now that we covered that. I don't have to do Josh's morning meds or get him ready for school since Scott does that now. I have always done it in the past though  until Kaitlyn was born. Now Scott has taken over. So now when I get up it is just Kaitlyn I have to do. I have morning meds for her now, and then feed her a bottle. Then we either have therapy for her, or shopping, or on a good day we can just stay home. I usually use this time while everyone else is gone to work on the things for therapy we need to do daily. Leg stretches, practice sitting, standing properly, ect. Around 10:30 she goes down for a nap. I then get a snack ready for Josh to eat since he gets home from preschool around 10:45. Once he gets's like a tornado hits. He is usually hyperactive, but also very (how do I put this nicely?) difficult. He wants to eat, but nine times out of ten what I have ready is not what he will eat and it usually results in a meltdown trying to figure out what he does want. I usually end up putting him in his room to calm down since he will bang his head or hit/bite me out of frustration. When I finally get him something he is willing to eat, he will take one or two bites and get down. I almost daily then get a meltdown over him wanting a specific toy and me not figuring it out. I am most days just tired and frustrated by now. I give him his noon meds anywhere from 11:45-12:00 and get him down for a nap. Usually around 12:30 Kaitlyn is getting up from her nap. She usually is happy and plays for a bit on the floor. Then we do her mid-day meds and do a bottle. She doesn't usually want solids at this point and some days I don't even push it. (bad mommy). I spend this time frame getting dinner either prepped or in the crock pot ect. I try to work on some more therapy things with Kaitlyn and make sure everything is ready for the after school rush. I pick up the kids (usually waking Josh to go and so he is such a happy boy and Kaitlyn is tired by this point so she isn't happy either) and we come home. As soon as come home I put Kaitlyn down for her second nap and then do snacks for all three boys while I go through planners and homework folders. I give Josh is 4pm meds and try to get dinner finished up and deal with Josh's ever present meltdowns over wanting something I can't figure out. After a brief time of play, we start homework for Trevor and Jordan. Jordan is always easy and very pleasant to do homework with and so he always goes first. Trevor is a different story. It takes alot more focus and one on one to get him to sit down. I am usually hoping Kaitlyn is still asleep and Josh will be good for at least a few minutes so Trevor doesn't get so mad and have his own meltdown. (most days lately I am not accomplishing that....sigh). Once homework is done, or before:)... Kaitlyn gets woke up from Josh's screaming. It's awesome. She is ready for a bottle and some days I talk Trevor or Jordan into holding/feeding her, but that doesn't happen often. By this time it is usually 5:45 or so and I realize I need to have all homework signed, in backpacks and dinner going so we can eat when Scott gets home at 6:15. He always walks in the door to pure chaos these days. We sit down at the table to eat dinner as soon as he gets home and then we begin the nightly fight with Josh about sitting at the table to eat. He does not like to sit down and eat. He takes some one on one at dinner time so he sits in between Scott and I. I do have Kaitlyn on the other side of me that I am trying to feed her solids to while I eat (left handed these days). We have a family ritual that we each get to say one good, bad and funny thing that happened to us during the day. Trevor gets frustrated very easily because usually I am distracted with Josh and Kaitlyn and he feels that all the attention should be on him. It's the autism ODD coming out in him. He doesn't tolerate us not following the nightly plan. So we have to try to make it all work. Since I feed Kaitlyn I take longer to eat so Scott usually gets done and gets Josh in the tub and does some of the dishes while I finish up. When I am done I get Kaitlyn in the bath with Josh and ready for bed in her jammies. I put her in the jumper while Scott gets Josh out and begins the process of re-taping his G-tube up and doing his night meds (takes about 15 min). I will try to get dinner dishes finished and the table wiped off during this time. Then we deal with Josh's frustration and meltdowns over who knows what.. until it is time for bed. He gets hooked up to water with the feeding pump and we finally have him down. In the meantime we are also dealing with Trevor and his meltdowns over nightly chores. It is soooo much fun. After Josh goes to bed (finally!), it is time to do the nightly list. That includes doing Trevor's lunch for school, making sure if library books, or whatever is in backpacks on the correct nights. Josh's daily meds (there are 13) need to be done and ready for the next day, bottles washed and Kaitlyn's meds now have to be ready in her bins. I can't do this until she has had her night meds and last bottle of the day though. We make sure Trevor gets his meds and tackle bedtime with him. He does not always go to bed willingly. We will leave it at that. When the three boys are in bed and it's just Kaitlyn, I finish cleaning up the toys, ect and let her roam for a bit. I try to get her in bed by 9... but usually it's 10 when we finally accomplish that. I do a quick run through and make sure everything for Josh is ready for the next day (meds, clothes, formula) and make a morning bottle for Kaitlyn and finally I can sit down.

Of course days that either Josh or Kaitlyn have appt down at Primary Children's my schedule gets messed up and I have to deal with the fallout of that with Trevor. I stick to this schedule consistently unless there is something like pack meeting ect that makes it harder. Then I just know Trevor will be off his game and meltdowns are likely.

Right now between Trevor, Josh and Kaitlyn, we have 21 prescriptions to deal with on a daily basis. It gets tricky, but I have a good system and rarely does anything get forgotten. It has taken me a long time to get to this point. I do wish I had some better organization skills...maybe I could make it even easier.

Now you have had a glimpse into my world... do you want to trade? LOL~!