Memories

At the beginning of the month I had intended to put some photos from vacation on here. With all the drama and trauma I just have not had time to do that. Today is the last day of the month and we are ending it just as it began with a snow day from school. That is all I will say about that. The memories of the fun times keep me moving ahead one day at a time.

Paul and I enjoyed having breakfast with Goofy and some other Disney friends. Paul is not much for getting his picture taken.

Trevor and Pluto were posing for the camera. They were trying to show Paul how this picture taking thing goes.

We visited the animals and this beautiful lady came walking by. She was so close we could have touched her.

Here is Lauren just being herself.

This very adorable baby, Andrew had a birthday the middle of January, so now he is one. Watching him grow up is such a pleasure.

The very next day Karre officially became an adult. Wow, where does the time go? It seem just yesterday she was an adorable baby too.

A Tornado In January

We have had calm around here for the past week, a drug induced state of calm that is for Hanna. We have been running on a six hour schedule which has worked well in keeping her calm while her body takes the time it needs to heal. I as well as the two PCAs who have been caring for her have enjoyed spending time with her. When given two or three choices she has done well. she has been cooperating with showering, walking, and doing a little bit of homework at a time. We have not had the usual Hanna attitude and at times she has even asked for help which is really out of character for her.

This morning our calm came to an abrupt end. Dad told Paul and Allen who were being boys, throwing the ball and running to go downstairs and do that. Well, for whatever reason, likely none at all, Hanna thought she was going to join them downstairs. All Dad had to say was "No"
and a Hanna tornado came about with full force, as in needing to restrain force, as in two people were holding her wrapped in a blanket so she could not hurt herself force, while I was on the phone with the on call physician.

It was our lucky day in that the physician I was speaking with had been a member of the ethics committee we had been working with for the past three years so I did not have to explain the whole situation to him. He told us to keep her restrained and re medicate her even though it was going to be an hour and a half early. She was screaming so loud that I could hardly hear anything he was telling me. We got her calmed down only to discover that she had torn some of her stitches out so we had to take her to the emergency room. That was four hours of stress I did not need today.

She is home with new stitches, sleeping. We need to make changes in what we are doing because she is capable of fighting the medication. We are in contact with hospital personal every six hours while they try to get in touch with her physicians and try to come up with a new plan. My hope is that it involves staying home, but that said she needs to be safe, Oh, Hanna my girl, you are a challenge!

Germs

Germs, they are everywhere all the time and they have sent this family just a little more chaos, like we really needed that right now.

We have had kids with fevers, sore throats, and headaches so after another one came home from school early we took the entire crew, except Hanna, but including two PCAs who are here almost every day and got throat cultures. There was one positive for Strep in the rapid test and the results were the same for the twenty-four hour version. That one test landed all of us on antibiotics for the next two weeks. We needed to treat everyone because some of our kids do not communicate well when they are sick and because we do not need Hanna to get strep right now. She is one of those who would not tell us that she was not feeling well, because, well then you just might have to do something about it.

We have not had this Strep garbage here since November 2009.

The Helpful Guy

Paul is such a helpful guy. I know he has told me at least a thousand times, since he came with Karre to bring us home from the hospital, how much he missed me and how I need to stay home all the time.

He was busy asking Hanna and the nurse all sorts of questions.

Paul, "Anna (that is what he always calls her) you feel burrer (better) Anna"?

Hanna, "No, Paul I feel very bad".

Paul, "Hey lady what you doing to Anna`s hand"?

Nurse, I am taking this thing that gives her medicine away so she can go home with you".

Paul, "Anna can put her pews (pills) in apple sauce cause that is what I do and that will make her all burrer, really burrer".

La La Land

When you tell most people who have recently had surgery to "take it easy, take naps, no running, lifting,or fast movements" you will get cooperation. Most people can figure out how to veg while their body heals, but that is not the situation at all with FASD. Hanna was having one heck of a melt down when our pediatrician and her other doctor showed up the morning we were scheduled to leave the hospital. The two of them a nurse and I left to the room to discuss the situation while two other nurses very patiently, calmly, worked with her.

After talking things over we decided that we needed to stay there an extra day while they came up with a cocktail of medication that would keep her calm enough to go home safely. I don`t think she realized that we were staying there longer then had been planned. None of us was going to bring the subject up with her unless she asked and she never did. The fact that she does not understand the passage of time helped us out here.

Now we are home and she is not going back to school because we have to keep her is la la land in order to allow her body the time it needs to heal.

She gives us a little attitude running her mouth so we get some walking in or maybe get her showered and changed and then her meds kick in and in a matter of minutes she falls asleep, (the kid can actually sleep). She sleeps for an hour and a half or so and then slowly wakes up and is a really good kid for about an hour during which time we can play a board game or two, read, watch TV, do some craft, or her favorite, color. Then the attitude starts over again so we re medicate to start the cycle over again.

We will be running this six hour cycle 24/7 for two weeks. I have two PCAs helping me so I can get in six to eight hours of sleep. I do not function well without sleep. We go re-evaluate the situation at the end of that time and I hope things are going well enough to take her out of la la land and get her back doing the things she is used to doing.

A Quick Update

It is only Friday but this week seems to go on forever.

Hanna had surgery very early Wednesday morning. There was nothing routine about it at all, in fact some physical anomalies were found so her tissue has been sent to Rochester for further study. The most likely source of the problems is her FASD ( yeah, that craziness affects everything about them). A physician ( who has been along for the entire three year journey) and I were both is tears. We were both a little shocked to realize that we had accomplished what we had set out to three years ago and we were both so glad that when this is all over Hanna will be healthier and I am sure happier too. She will still be vulnerable and make poor choices, but at least we will not be raising any kids that she can not take care of.

She is really grumpy and likely will be for a while because she does not realize yet that she is going to totally be chilling for at least two weeks. She demonstrated the need for this at the hospital this morning before we left, oh yeah the joys of special needs kids!!

I am glad to be home where someone else will be on Hanna watch tonight while I SLEEP.

In The Dark

Well we finally finished up Paul`s IEP yesterday. It will work, the evaluation which took forever to get done opened a lot of eyes. Now he is old enough that the FASD stuff is really showing up and he is off all seizure medications so he is no longer snowed. The electricity went off about half an hour into the meeting so we got to finish it in the dark. There have been an awful lot of things that have gotten in the way in the process of getting this done.

Then I went home to still no electricty so we took the kids out for pizza.

Late Again

I awoke this morning at 5:45 am (yes, all of my kids were still sleeping for some unknown reason) to the phone ringing. It was the school`s automated system telling me that school would be running 2 hours late, AGAIN! That stinks, I was supposed to be at a meeting at 9:00 am and the bus would not get here until at least 9:15 am. We are not meeting this morning, not sure when that is going to happen as most of this week is packed with Hanna having surgery, Paul`s IEP stuff, and then we are going to do something fun for my birthday next weekend.

She (Hanna) is bonkers, of course right now. We pretty much expected that from her. She trashed her closet and all of the downstairs Friday and Saturday. She will get it cleaned up one way or another. Paul`s tooth fairy money was in her room, but of course according to her, she did not have anything to do with it being there.

Anyway are we going for some kind of a record with all the late starts or what?

The Gym Is Gone Forever

At Paul`s school this week they are presenting their winter music program, you know those little darlings are sssoooooooo cute up their singing. I will attend the program this afternoon, the last show because well, you will figure it out very soon.

The door opened and four kids came in and started taking off the boots, mittens, etc, leaving the door open of course. Then Paul started jumping up and down screaming IT`S GONE, IT`S REALLY GONE FOREVER!!! He is throwing boots, coat, mittens, backpack, lunch box, and glasses at the wall, bam, bam, bam. so I pick him up still in his snow pants and take him to the rocking chair to calm him down.

He is flapping his arms, kicking, screaming, and crying all the while telling me that the gym is gone because there are lots and lots of chairs in there, and peoples, and kids everywhere, it is noisy, the piano is there, and Mrs. Music Teacher, and he is sad because he wants the gym back, and he is very, very sad.

Oh my goodness this kid thinks that because the music program is in the gym it is actually gone forever. I do my best to explain that everything will be back to normal after the program is over, but he does not understand time, he does not transfer information from one setting to another and this music program itself is very hard work for hm.

While I am calming Paul down Allen decides that throwing shoes, boots, coats, etc is the thing to do so our wall now has a few more holes in it and a little less paint on it.

Hanna ate three bags of fruit snacks (the orthodontist is going to cringe when she hears this). The dollar bill Paul had gotten from the tooth fairy was on the corner of the counter because I was going to take it down to the safe when I went down to get milk from the locked refrigerator and I did not have a pocket in my sweat pants. Well at any rate it disappeared and Hanna I know you took it and if you did not give it away I will find it because it has glitter on it, so you have been caught AGAIN!

Lauren was being a very smart young lady, she went downstairs and stayed away until all was calm.

This afternoon I am going to the music program and then I am going to find Paul and take him to the gym. We will sit there and watch them stack the chairs, take down the bleachers, and sweep the floor so that Mrs. Gym Teacher will be in the gym next week and Mrs. Music Teacher will be back in the music room where she belongs.

One Down Nineteen To Go

Paul lost his first tooth today while at school. He must have swallowed it or something because he did not bring it home with him. This tooth has been loose since early December. He was not going to let anyone take it out of his mouth. The new tooth is already coming up. It looks really crooked, sigh, really big sigh, do we have another kid needing the orthodontist? He only has nineteen more to lose. Our little boy is growing up fast,very fast.

Just A Flower

We had a meeting yesterday afternoon with twelve people in attendance and three more that should have been there. ( I did excuse them knowing there was plenty of information already and they will get there chance later). We began going over the evaluation that I had requested last spring which is finally done. In this testing Paul was the sweet little guy I know. All of there formal testing told them EVERYTHING I have been telling them for a long time now.

Paul was having trouble with one part of the testing so he told them that he was not going to do it, "lets just pretend". I thought that was pretty creative coming from him. On another part he was asked to identify pictures and when he came to the picture of the flower he said that it was a flower and then he was asked what kind of flower it was he said "just a flower".

Paul is not able to pay attention to details at this point unless he is obsessing with something (usually cars). He does not care if it is a red rose, a yellow tulip, or blue daisy, a flower is a flower and that`s that. That is okay for him right now, we can worry about the details later if and when he ever gets to that point.

Now comes the tricky part of this I as his mom know all of the details and want them documented to represent the complete picture of who he is, how he functions, and how to best provide a learning environment that will meet as many of his needs as possible. He is a complex child who has numerous diagnosis so there needs to be a fair amount of detail here. I have a team of fourteen other people who are not seeing all of the details that I am so we have to come to some sort of agreement as to how to best do this. I am willing to make some concessions, but I do not want to make the picture so simple as to leave out important information that could really help them to work with him effectively and make his school experience the best that it can be.

Until next week when we meet again to try to finish this laborious task I have some details to think about. If only it were "just a flower" life would be so much easier wouldn`t it,

Aurgh!! Anyway

We have been back from vacation for less then two weeks and every single day I have had to go some place or do something. Today is the first day everyone else has been out of the house doing their own thing and then when I turn on the news at lunch time I see schools are closing early due to the weather as close as twenty- five miles away. They better stay put here!

We are still working on getting Lauren`s seizure issues under control. This involves a lot of medical appointments, phone calls, and documenting. It is going to take some time to get this right, but we will figure it out. We have an excellent team working on it.

Hanna has been bonkers lately. She is scheduled to have surgery in less then two weeks and she knows something is up. We will be going over the particulars many, many times with her. Finding ways to deal with her when she does not understand takes some creativity. In the mean time she is really trying the patience of all of us.

We have finally completed a full evaluation for Paul so I am preparing for a meeting to get things moving forward for him. I know everyone is not going to be on the same page here so I am getting prepared to be the crazy mom if I have to.

Someone (thanks Trevor) who was trying to be helpful, left the freezer door open so we had to have a cleaning party late the other night. We had lots of things that were usable but could not go back in the freezer so I have been cooking it all up.

My van was is an accident while we were gone (one PCA backed into the other on the ice) and the re-set switch for the wheelchair ramp was damaged so we have been putting it up and down by hand until we can get the part to fix it. This is a dirty, heavy, job to do by hand. The insurance paperwork is finally all done so now all I have to do is get an authorized person to repair the thing. I hope we do not have to take it to the cities to get it done. That would be just one more trip I do not need.

We have nothing on the schedule except to get grocries (we always need those) this weekend so I hope that I can get caught up on a few things here, even with the kids at home. It is going to be cold and windy so there is not going to be any chance that I can send them outside for very long.

Hanna Is Up To No Good

We had a really great vacation!!! I will be sure to put some photos up when I get around to it, but for now we are back to normal routine.

Yesterday Rene` had the kids get their backpacks out so that we could make sure they had everything ready to go back to school. They all got the job done except Hanna. She could not find her backpack anywhere so we told her that she was going to have to give up some of her allowance to put up as a reward for the finder. Everyone searched this house, van, truck, and garage for it. Lauren and Rene` emptied out the closet completely looking for it. We could not find it so I had Rene` call Christine (one of the PCAs who watched her while we were gone and she told her that the backpack had been on the stool in the dining room. That is where four us of remembered seeing it. She also said that there had been candy in it from school. Knowing that there was candy in the backpack we gave up the search. I told Hanna that if it did not turn up she was going to be buying a new one and replacing the contents as well.

This morning two minutes after it was time to be heading out the door to catch the bus that hot green backpack appeared in the closet where it is supposed to be, the one the girls had emptied just yesterday afternoon. Just for the record the candy was ALL gone, but there were plenty of empty wrappers in there.

We are back to our reality that's for sure.