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.