It is a good thing I didn't have time to blog the last few days because I was so MAD on Monday that I would have written a scathing post. I have calmed down and things worked out (like they usually do...why do I get so emotional?!
Anyhow, after Jenna's hospitalization in May we had to wait to get the reports back from the various specialities so they could write the final report. We never got one so at the end of September I put Günter onto checking into it. (We have an agreement in our marriage that I handle all the American issues--which were many when I worked on base--and he handles all the German ones). After going the rounds with the ward doctor we got a copy of the final report faxed to us and he told us to call the chief doctor because he wanted to explain some issues to us (which made me nervous) but his secretary called and said he wanted to meet with us in person and the soonest available apointment was 18 Nov!
Of course I was upset then, but accepted it. Well, on Monday (17 Nov) we got a call from his office that they were going to cancel and gave us a--get this--MARCH 15th apointment!!!!!! That is why it is a good thing I didn't blog then. I called Günter out of his work meeting because I was so upset and had him call and talk to them. I am telling you, if I had any recourse I would have taken it. So after he explained already how long we have waited and that it was unacceptable to wait nearly a year to go over the results, they said we could still come in and we would have to wait since he was the only doctor that day and had to make his rounds and such. Okay.
On Tuesday we had 3 doctors for Jenna to get through. The first one required fresh urine so I had the FUN of a complete melt down in the morning as I tried to get that sample. I knew I had to do it first thing (yes, the kids are still waking up between 5-6 am) and tried to get her to pee in the little potty. She wouldn't. Then I put a plastic bag under the toliet rim to catch it and she got so upset and tried to rip it out and then refused to go. It was just horrible with all the screaming and tantruming she did (plus I had found out when I went to the doctor the day before that my "migraine" was really a sinus infection and I also had bronchitis). Günter did manage to get some urine after she peed standing and he plopped her on the toliet in time to catch some (then had to clean up the mess in the bathroom).
We got Niki to KiGa and then I sent Günter with Jenna to the doctor while I rested. When he came home I found out that after all that trouble the "intern" saw the urine sample and did the normal test and dumped the rest!!!! It had to be sent to Heidelberg for metabolic testing...but a miracle happened and Günter was able to get Jenna to pee a little in the small potty they had while he held the sample cup--just enough! Then they had to stick her and take blood samples to send too.
After they got back and we got Niki from the KiGa we drove to Homburg and to the genetic clinic. We found we needed a referral from the doctor but they still were willing to do the work and I would send them the überweisung. Jenna totally freaked out when he put the elastic band on her upper arm to build up the blood and I was to hold her on my lap and keep her arm straight while he put in the needle and took out two vials of blood. She was thrashing around and I was quite drained physically when we accomplished the task. I didn't want ANYONE to suggest rescheduling! They will have the chromosones analyzed and the DNA. We are trying to rule out LIS1 and a chromosonal damage on marker 22.
After we went to the chief doctor and I thought we would have to wait several hours but we were seen within 40 minutes and he spent 1.5 hours with us. This time he showed Günter the MRI results and I wrote the frame numbers down that show her pachygyria. They did an EEG and found another abnormal reading and he went over all the signs we may see if she has a seizure and what to do. They only start medication after 3 seizures. Everything else was basically what the final report said and we already knew that.
Now we wait until January then start the process of getting THOSE results.
But I am leveling out with accepting Jenna's condition. She is what she is. Her condition will not "worsen" or hopefully she won't regress (which he warned us is a bad sign) but she may continue to seem worse only because we will notice how Niki's development (or other children) is making fast progress and hers will be much slower.
I am reading a good book right now called "Love You to Pieces". Stories of families living with a disabled child and what that is like for them. It really helps me to feel like others understand and that Jenna's situation is not the worst thing.
Today I got a phone call we all dread. The ReHa pyschologist called and asked me if I could come in today--it was very important. I piled Niki in the car and drove right over.
He then told me that another girl in Jenna's class alledged s@xual abuse by one of the men (boy) that was interning there. Of course I felt sick but then slowed myself down and asked more. After this girl told her mom that his young man (16 years old) had kissed her and "touched her"--but they couldn't tell me what that meant. Did he touch her shoulder or her privates? No one knows. Anyhow, they called the police and the young man in susended from working at the ReHa. His parents went with him to make a statement. The girl that made the allegation has to go to a pyschologist to find out if there is any substance to it. If there is, they will press charges. The little girl said he also kissed Jenna and another child.
Of course at moments like this all kinds of emotions go through your mind. As I thought about it and they young man, I thought that he probably was innocently kissing the children--Jenna goes up to people to hug all the time and if she really likes something she kisses it. Almost all the kids have problems which prevent them from normal communication and so they use a lot of gestures to communicate. The little girl who alledged this is a rather troubled girl mentally and usually over reacts to things.
The teachers are usually altogether with the kids and it is doubtful that a person could do something without being noticed by the other adults. But before you get upset and think I am in denial and all, I did ask if he had ever changed Jenna's diaper. They didn't know for sure. Of course I always have a fear in the back of my mind that Jenna is a prime target for a perp since she is pretty, can't talk and wants people to like her. I am very careful who I leave her with and keep a careful eye on boys/men and try to use my "second sense" to get an idea if someone could be inappropriate.
In this case, I really think he probably gave a kiss on the cheek and even a hug--I wouldn't even find that over the edge--It is a fine line with handicap kids because they need affection too and I think it is Jenna's love language. I am not upset even if he was affectionate with Jenna. Only if he touched her privates in a sexual way. That we can never know because she can't tell us and I doubt she would even understand questions I might ask. I certainly am not going to coach her or lead her into admitting things (I have seen parents do that with kids in therapy--especially in child custody cases where they alledge things against the ex-spouse).
If it did happen, I won't know and I think she can recover quickly. If it didn't, then I feel really sorry for the young man that could be falsely accused. I have seen what that can do to someones life even when it is false.
I speak this a little from personal experience. As a therapist I saw a couple in marital therapy and the wife really was mentally unbalanced and she filed an accusation against me that I lifted my skirt and was touching myself in the session to turn on her husband (the thought!). I was investigated by my licensing department and really felt guilty until I proved myself innocent. I had to get colleagues write letters and even though they believed my innocence, they still acted strangely towards me. It was a horrible ordeal! I was cleared of course, but it was enough to make me wonder if it really was worth all the trouble being a therapist, when all I wanted to do was to help others.
So this young man's head may be spinning as he had the carpet pulled out from under him because of this. I guess people don't think about that side of it unless they or someone in their family has been falsely accused of something. That young man really was kind and caring to the kids and I never got the feeling he was creepy. And I had interviewed enough perps in my career. I had also worked with many kids that had been abused and know that side of it. It helps me to keep my feet on the ground and not over react now.
We all want to be protective of our kids and bad things do happen despite all we do. I want to prevent that but also can't and won't keep Jenna at home for the rest of her life so I can personally see who has interaction with her. I still want to believe that most people are innocent and still want to keep an eye out for the very few that are not.
Wailed the boy Niki after he went potty. Lately we have been attempting to teach Jenna to use the potty (soon I can't get a bigger size diaper than 6 on the German economy).
Before we found out the extent of Jenna's problems I had planned to train her between age 2-3 when I saw she was getting ready, but that never happened. She never was interested, in fact she resisted so much when I tried (when Niki learned it) that I was worried it would start a power struggle and I saw in therapy when discouraged parents came in because their child wouldn't potty train just to show they were in control. I backed down and hoped I would know when to try with Jenna.
I had serious reservations and wondered if, like her drooling and food all over her face, she doesn't seem to have sensory feedback and it would also be the case with sensing her bladder and bowels.
A few weeks ago when she didn't want to go to bed she would pee and take off her diaper and get out of bed and bring it to me (and a few times poop too). I thought "This MUST be the sign!"
About 6 weeks ago the binki "flew away" and I got rid of the bottles before that, so I thought I just have to push a bit and try. I made a big deal of what a big girl she is etc. I made charts, I had potty bookes and I had rewards. When I told her that she wasn't going to have diapers any more she told me no and ran and got a diaper and tried to put it on herself! Then I had to bribe her to sit on the toliet. I read books and I talked to her and sang to her...but no pee came. Then, just as I was about to give up she peed! I clapped and Niki ran in and clapped and we both told her we were proud of her. I told Günter and he got excited for her. We sent her off in undies on her little bus with a note in her book about helping.
That day she came home with another child's clothes and 4 complete outfits (of her own I stock there) all wet. I wondered how this will work if they don't take her and enforce her to sit long enough to relax and pee. I know they are short staffed but...it needs to happen. Now I worry we will lose the window of opportunity. I sent to her school a package of pull-ups and sent her the next day in pull ups. Well the same thing happened. She wet several sets of clothes (other childrens) and I was so frustrated. We wrote a note in her book asking about what system they were using and no note came home. By Friday I was tired of all the laundry and put her in daipers. Then a note came home that they would work with her.
This week I send her in pull-up but she comes home in another child's undies and today she came home with NO undies, no pull-ups and NO diaper under her pants! ARRRGGGHHH!
To top it off, Niki is getting jealous and is upset when I don't clap for him (he pretty well trained himself 6 months ago) or give him a reward. It even goes to far when I am going potty both Jenna and Niki come in and clap and tell me they are proud of me.
Now if I can get Jenna to want to at least learn the peeing part I will be greatly relieved!
Since Jenna was born she had some trouble soothing herself. We quickly introduced the binki (aka schnüller) and she took to it. I thought it would be good to help her learn to keep her mouth closed (and maybe help stop drooling). I was never was sure when the right time was to move on from the binki, so I let her continue. Months and years now have gone by and it was always in the back of my mind that she needed to stop using it but I dreaded the weaning process. A few months ago she went to the dentist for the first time and I was surprised that he knew she still was using a binki, and that jolted me into thinking finally I should do it. Afterall, she needed it when in the hospital and at various times when she has had to go through a lot of new things, but she was through those now. It was time. One night I couldn't sleep since I was obsessing about this process. Well, this weekend (Friday) I did it.
I know this probably wasn't the right way to go about it, but I told her that her binki's flew away to a baby that needed it. I didn't want to tell her I was taking it away or she would whine and try to manipulate me to giving it back to her. It was the best I could come up with.
I was absolutely shocked how well she did. She never once asked for it over the weekend. She has cried in the night and I have put her in bed with me to help comfort her, but each night she has gotten better. I guess she was totally ready. She has been watching this show where they read a book about a girl getting rid of her schüller over and over. Niki freaked out and thought we were going to take his cuddle duck away too. I guess that is for another time. Now I wonder when I will tackle potty training!
Last fall when we met with the Developmental Pediatrcian at the ReHa, they recommended special orthotics for Jenna to help her get more feedback from her feet, which could help with her balance and sensory issues. It went back and forth all year. The OT said that the insurance would only pay for regular ones...so we told her we would pay the difference (189 euros--highway robbery) just so the process would go forward. Then she said they wanted the doctor to call the insurance...we waited and waited. The school year ended and I was chapped about it not being accomplished in that time! When Jenna went back a few weeks ago I started pushing the issue hard. Waa-Laa, we have them now. I was shocked when I first saw them since I was thinking of something like the bumps in those massage sandals or something. Well this is what they look like:
We have to gradually introduce them since they are very drastic. Looks like they would be quite uncomfortable!
She hasn't been complaining when we make her wear them, so that is a good sign. We will wait to see if a bill comes. I hope when the doctor called that took care of the billing too.
Jenna is a funny girl. The favorite things she loves...Hats...she sometimes puts them on her feet and scoots around the room laughing.
Playing in the sand:
Making tea parties/picnics. She lays out all the dishes and things on a blanket and sometimes has a teddy bear.
She is Miss Congentiality--always smiling and friendly to people. Even ones she doesn't know aren't real!
She is growing up.
