Keeping busy

Don't mind if I do. With our day to day normal activities we have thrown soccer practice into the mix for both of the boys.

Monday and Wednsday is for Shawn and Tuesday and Thursday is for James. It makes for a very interesting week. Abigail thinks it's great and so does Michelle but after 30 minutes they are both done and ready to go home. Makes me wonder what this weekends game is going to be like.

Michelle is doing fantastic in school. I have been working with her at home on recognizing her alphabet (she can sign the song just fine) and she loves her 'abc time' as she calls it.

Abigail thinks that it is fun too so she joins in for about 2 minutes and then she is done.

I am hoping with all the hustle and bustle that it will help make the next two months go by pretty fast. It's not like I don't have plenty to do already but I am a firm believer that children who excel in sports or music do better in school and life. I played softball all the way through high school (and I have the scars to prove it). I played the saxiphone (sp?) for 5 years and got better grades while doing both of those things then I could have ever imagined. Not to mention being involved in drama, choir, AFJROTC, drill team and a few more. I hope my kids enjoy it just as much as I did and still do.

A story about a neighbor...

I have some pretty awesome neighbors. And then I have some pretty insane ones I stay away from. See on base our houses are conected to another house. So we are very close to each other all the time. Makes it pretty hard when we have noisy days. But it almost makes it a little bit easier to make nice with each other when you live that close together.

So everyday the bus picks Michelle up in front of my house. And everyday when I turn around to walk back inside there is this cute little girl and boy looking out the window at me. If the window is open I go and say hi if I have the time. The other day I was talking to the kids and the mom and noticed the mom really panicked when the little girl smacked the boy on the head. She told her not to do that because she could hurt his owie. I asked her if he had fallen or something and she said (and as calm as could be) no he has a shunt.

I said like a VP shunt? He has Hydrocephalus?! She said yea. I was in shock. Here I am living on this base for almost 4 years and I have only ever met other Hydrocephalus patients in the Neurosurgery clinic and I have one as a neighbor now. He is two, he walks, he talks, he plays and his is as adorable as can be. Of course me and the parents have hit it off wonderfully. They want to know everything about Michelle and I want to know everything about them. He has never had a revision and Michelle has had over 20. Sort of a bummer for me and slightly scary for them.

I had to share that though. It's nice to know your not alone. And this condition is a scary one. On a good note Michelle has started to return to her baseline. Not yet all the way there but she is getting there. And we have an appointment next month to see her Neurologist!

I had that moment...

Only when I get completely frustrated with everything and everyone do I have these moments. Here lately it seems like they are coming more often. Maybe because im pretty irritated that Michelle's doctors who have gone to YEARS of medical school have sort of just given up on trying to figure out whats up until she gets worst. So basically I feel like a really mean grizzly bear fresh out of hibernation trapped in a cage and they ae not giving me food.<- best analogy I could come up with.

I am watching her, and everyday she has a new or worsening symptom. Today's symptom... barely eating. But since she is still tolerating her g-tube feedings there isnt much I can do as of yet. Basically they are waiting for the sign that the pressures are increased before they do anything. At this point if they admitted just to monitor (idea was brought up by the NS Nurse Practitioner) her that sounds better then them doing nothing. But then again flu season is starting around here and I can't bear to have all my babies sick if she does go in. So for now we wait.

Waiting is annoying. And as annoying as it is I completely understand it. I have been scouring the internet for some sort of answer. Something, anything. An explanation of just normal 4 year old behavior would be fantastic but no, the doctors say this is not anywhere near normal behavior for even a child with no medical issues. And were back to annoying.

A feeling of sheer terror.

It's not secret that im a pretty protective mom. I don't shelter my kids from life I help them understand it. I teach them the things that a child should know at whatever age they are. I protect them from the things that they need to be protected from. Im a parent. That's my job. It's also no secret that when it comes to Michelle's medical point of view at times there are things far beyond my control.

Today was a very scary afternoon. My day started off fantastic. My husband called and I woke up to a cute little boy sitting next to me smiling from ear to ear. So I honestly didn't believe that things would go down hill...

You see Michelle's bus arrives at our house at 3:35 on the nose. Her driver that she has had has never been late. Not once. I know school has only been in session a week but thats pretty good given where they drive from and that she is the last kiddo off the bus everyday. Anyway, I loaded Abigail and Shawn into the car infront of my house and waited patiently for the bus to arrive. By 3:45 there was still no bus and thankfully my neighbor grabbed James from school for me. 3:55 there was still no bus and I began to PANIC. Like it was cool to do so.

I had already called the transportation department at the school to find out what was going on and all I got was a message machine. I hung up and dialed them 10 more times with no answer from them. Surely they should have known where our driver was and where my daughter was. Panicing more I called the school. The secretary there got ahold of transportation only to find out they couldn't get ahold of the driver and there I sat for 10 more minuted on hold. They finally told me that she was on her way and that they had some difficulty not saying what it was and that she would be home in just a few minutes.

Finally at 4:12 I got Michelle from the bus. I didn't say more than a few words asking if my friends son was still on the bus to the driver (who was not her regular driver). I took Michelle inside and thanked GOD that she was alright. Her school gets out at 3:15 everyday. We live 3 miles from the school. She is the last stop with only 3 kids including her on the bus.

On the 26th try I finally got ahold of someone at the transportation department only to get no answer. Why on earth was my Special Needs child on a bus for an hour? Weren't the parents notified that the driver was running late? Why should I have had to rely on my neighbor to pick up my son from school? Why didn't the driver notify dispatch that he was late? And why on earth did it take them 10 MINUTES to get ahold of him!!!??? Oh and I do have all call logs showing I called them 26 times before they answered.

Im honestly a mess. She says she is fine and that she was not hurt in anyway. I should never have to ask my child if someone touched her in a way that is not right. I should have never been put in this situation. Michelle is such a loving caring person and because of her disibility can and will go with anyone she "likes". It's not safe. Transportation is the only solution for us seeing as how I have to try to be in 2 places at once. This was truely and honestly the hardest thing I think I have ever had to deal with. I couldn't find her. She wasnt where she was supposed to be. She was with someone I don't even know and no one can tell me why things were the way they were.

Rest assured that this momma bear has a mean side and is prepared to use it if I do not get an answer. I have been there done that in the past and I do not want to do it again, but this was not fair to me or my other kids. They were scared and didn't understand and still don't why that man was so late in bringing these kiddos home.

Ok im lost, someone help!

There is no amount of research that can tell me what the heck is going on with Michelle. Here are her symptoms and you tell me if you have ever seen any of these. Seriously im desperate. The doctors all probably think im crazy because she is fine when we are there but than slips right back into it within a few minutes of a "good mood" as im calling it right now.

* Extreme mood swings. Extreme like the cat and dog fight all day long and the next minute you see them snuggled together under the porch. They are horrible.

* Anxiety. You would honestly think the child was being murdered with the way she screams at times.

* Sleepy all the time (so far all CT scans show no increased pressure and her opthamolagist even checked her eyes for shunt malfunction yesterday.)

* Phantom headaches. One minute they are there and the next they are gone.

Im at a loss. My nerves are fried and im ready to rebreak my phone (Abigail tossed it into the toilet but I managed to fix it). I cannot go into the garage to throw the trash away when Michelle is awake. I either have to wait until she is at school or do it when she is sleeping. She wakes up at random times which is making for an even more confused me. She's still eating with no problems and tolerating her g-tube feeds. Neurology wont return my calls, Neurosurgery says it's not their deal, her pediatrician has referred her to the ER IDK how many times and the same thing comes from it... Nothing. Absolutely nothing. It seems to have been a complete waste of time and nobody can tell me why she is having these VERY sudden mood changes.

Another year another new day of first's

First day of 1st grade.

First day of kindergarten.

First day of year 3 in pre-school....

First day that I havent had a chance to sit down and do anything up until this point. Sheesh. Im tired. And since the kids are sleeping I think im going to join them. Bring on day 2 of school cause im gonna be ready!

hard to think of anything

Even more so when your suffering from a horrible case of insomnia and technology cutoff. Since at&t can't get it together and fix my cable/internet/phone lines I'm stuck with the ittybity screen of a blackberry. Extremely annoying. The kids are all doing great. Michelle likes to throw me for loops every now and again but she does a lot of it out of habit. She has learned how to get her way, quite frankly its annoying but extremely brilliant. I wonder if I could see inside her little mind what I would find. I have high expectations for her. The thing of it is she has already risin above and beyond the majority of them. And of course I'm smiling from ear to ear about everything. Thr kiddos are definetly ready to go back to school (as am I lol! Shh its a secret). Were still counting down the days until Shawn returns home safe and sound. Let me just tell you that day cannot come soon enough, sleeping with a bulldog is not fun. She snores and smells very very badly. Lol! Well I guess I should go off to another night filled with no sleep. Oh I guess one good thing has come from the lack of sleep, I'm down almost 3 pant sizes!!!