Rough Week

It's been a rough week around here. It started on Monday when Hannah's cough had reached the point that I felt like I had to take her to the doctor. We went in and found out that she had bronchitis and a double ear infection. The ear that still had the tube wasn't draining like the tubes are supposed to help it do and the doctor said the tube was crusty looking and gross. So, we went home with a script for 2 weeks of amox-clav and orders to keep her quiet. Ha! Fat chance! Hannah is one of those odd kids who, instead of becoming lethargic and restless when they are sick, goes into hyper-drive. She becomes even more active than she normally is and it's next to impossible to keep her still. Even the promise of PBS kids or a movie isn't enough to keep her still for long.

Later in the day we had to go to Omaha to pick up her new orthotics and have them fitted. Luckily, they were able to get them into her current shoes so we didn't have to buy new sneakers. I was worried about this since I had just bought her new shoes only a few weeks before we had the appointment where the doctor ordered the orthotics. I really didn't want to shell out money for new shoes this close to the holidays. Upon arriving home Hannah had a spectacular meltdown when I suggested she wash her hands. In fact, she raged. I was barely able to get her upstairs to her bedroom to chill out and once there it was basically impossible to keep her in her room. She kicked her physical and verbal aggression up several notches from normal and for the first time I was almost frightened of her. It took over an hour to get her calmed back down. To find the silver lining in this incident, I was able to video a good portion of the ordeal to take with us to the psychologist the next day.

Tuesday she was cleared to go back to school, but we had to pick her up early for our first appointment with the new psychologist. Armed with my video from the night before, her previous psych report, teacher emails, IEP, disciplinary referrals, report card, etc we marched into our meeting. After studying our paperwork, speaking with us, and watching the video the psychologist came back into the room and told us that we needed to be referred to the Autism Center's Severe Behavior unit for their outpatient partial hospitalization program. We were floored. I knew things had gotten bad, but I had no idea we were now that far from normal 5 year old behavior. She also said that her initial impression of Hannah is Asperger's Syndrome. So, yeah, we are back to that again. I'd been thinking I needed to rename the blog since the last psych took away that diagnosis, but it looks like it may be coming back. The doctor also said that she WOULD continue to see us (and Hannah) if we wanted, that she wasn't just handing us off because she didn't want to work with us, but that she thought progress with her would be much slower and that Hannah needed more intensive help than she was able to give her. We were sent home with a phone number to call and a packet of forms to fill out.

Wednesday was rough, but manageable. Thursday started off ok, but there were issues right before we left for school when Hannah tried to smuggle books to school by shoving them down her pants. A battle ensued to attempt the removal of the books and the drive to school was not happy. Swim lessons on Thursday were awesome and Hannah made a lot of progress, but then after the lesson in the locker room all heck broke loose. Hannah got angry for some unknown to me reason and started shouting mean and disrespectful things at me. If I tried to touch her she'd hit me or swat my hand away. It was SO LOUD and it echoed all throughout the locker room. Every eye was on me and I was terribly embarrassed. I know I shouldn't care what others think of me and my parenting, but seeing all those eyes on me judging it was hard to fight back the tears that wanted to come as I struggled to contain Hannah, get her dressed and just get the heck out of Dodge.

Friday morning (today) started off rocky from the very beginning and only got worse as the day wore on. Hannah didn't want to get ready for school and was insisting she had already brushed her teeth when she had clearly not done so (sink and toothbrush were both bone dry!). Instead of fight with her over it, I simply told her that I would just go over them to be sure she had done a good job. She wasn't going to have that at all and got extremely aggressive. In the end she did a number to both me and the bathroom, ripping the drawer out of it's cabinet and the door stopper off the wall and head butting me so hard that tears came to my eyes. I eventually got her calmed and ready for school. I thought it was all in the past. She seemed ready to go, but just after lunchtime I received an email from the teacher saying that Hannah had spit in another student's face at lunchtime. She was sent to the principal for another "detention" during recess. She apologized to her friend, but I fear damage may have been done to that friendship because Hannah said that the little girl told her that Hannah wasn't her friend anymore and that she wouldn't talk to her or play with her for the rest of the day. I can't say that I blame the girl, especially since she had done nothing to provoke the spitting. The thing is, Hannah REALLY likes this little girl. She talks about her ALL the time. She's calm and reliable and a good influence, the perfect friend for Hannah. I have NO IDEA why she would have done something like this to her friend and apparently neither does Hannah.

As the week has wore on I find myself wondering more and more if maybe the psychologist was right, maybe this program she speaks about really is the right place for us. Maybe, just maybe, this could be where we can finally get some help. The only drawback, it's an 8 week program and Hannah would have to be pulled from school for that time. I don't know how I feel about that. Obviously she won't fall behind academically, but I worry about the disruption to the school routine and the loss of relationships that she has started to build with her classmates. It's going to take lots of prayer to decide what to do about this.

Photo Notes: Pictures were taken in November at a park near our house. The cat in the last picture acted like a dog and followed us around EVERYWHERE we went. It even came when called. It was SO FRIENDLY. Hannah was convinced it didn't have a home and that we needed to take it home. To tell you the truth, I wouldn't have minded having it, but a cat that friendly had to have owners so we went knocking on doors in the neighborhood near the park to see if anyone knew who the cat belonged to. We eventually found the owner, but they were totally unconcerned that their cat was across the busy road wandering in the park. That made me sad. He was such a sweet cat too.

ER

Well, we had possibly the quickest and least traumatic trip to the ER ever in the history of man this morning! Yesterday at recess Hannah fell off of the top of the slide. Apparently it was quite the fall and when I got to school to pick her up the nurse brought her out to me and explained what she knew. Hannah was complaining of pain, but there was no bruising or swelling anywhere on her arm and she had full functional mobility of it. I gave her some tylenol and hoped she'd sleep it off. This morning the first words out of her mouth were that her arm hurt so I decided I'd take her to urgent care before school. When we got to urgent care at 7:30am I found out that it didn't open until 9:00am so I took her around to the ER instead. There was absolutely no one in the waiting room and they called us back to a room before I could even break out our insurance card. The doctor examined her, sent her for x-rays, and then examined the x-rays and released us in under an hour. I left the house at 7:30am and Hannah was at school and I was back at home by 8:30am! AMAZING!!!! I LOVE small towns. Everyone was so nice and professional too. I didn't feel like we were rushed and they listened to what I had to say. The verdict was that Hannah had most likely dislocated her elbow when she fell and because she's so loosey goosey from her Ehler's Danlos it popped itself back in on it's own. There was a small amount of excess fluid on her elbow, but basically it checked out fine with no breaks. They discharged us with the instructions to keep an eye on it. Use Tylenol for any pain. Prevent her from falling on it again soon because it's vulnerable to another dislocation soon after this first one. AND to bring her back in a few days for another x-ray if the pain doesn't go away. I'm so happy that it wasn't broken and that she had no serious injury and I'm glad that I got to check out the ER during a non stressful situation so that if we ever end up there in the middle of the night I'll know the routine!

Photo Notes: These were taken this summer by my friend Kristie when we took them to the Omaha Zoo. Hannah enjoyed cheesing it up for the camera for Kristie!

Orthopedist

As we prepare to move we've been making the rounds to the various doctor's offices the 3 of us frequent (sadly there are quite a few!) to have final appointments and pick up medical records to hand carry with us to Nebraska. We learned during the last move that transfers of records from one doctor's office to another does not always happen in a timely manner and can really delay getting appointments with specialists. Today it was the Hannah's orthopedist we visited. Hannah was desperately hoping that Dr. Ehrlich would tell her that she didn't have to wear her Dennis Brown bar at night anymore, but such was not the case. Because it is actually working, thank heavens, she has at least 6 more months in it. She also has 6 more months at least in her AFOs and a warning that they will probably be a forever kind of thing. She WAS NOT happy about that, but I think she was even more upset about the bar. She has outgrown the shoes on her bar, but there are not any bigger sizes that can be ordered so we are going to have to slice off the front top part of the shoe and let her toes hang out over the sole a bit in order to get 6 more months out of them! We also learned a little more about how the Ehlers Danlos is affecting Hannah. Apparently besides the extreme laxity in her ligaments and unstable joints, she has a deformity of her sternum that is causing it to collapse inward. Right now it's not causing any issues, but the doctor warned that it is likely to worsen with age and that we will need to monitor it closely to ensure that it doesn't push into any of her internal organs. Her knees and ankles showed improvement from their various interventions, but her hips have actually worsened. So, we are off to physical therapy to learn various exercises to strengthen certain muscles to help keep her hips where they ought to be instead of allowing them to rotate in compensation for the knee and ankle issues. UGH! We really don't need more appointments at the moment with the move coming up and another specialist to track down once we land in Nebraska, but we want to avoid surgery down the road at all costs so we'll do what we have to do. So, that's pretty much it from the orthopedist. He was pleased about her progress, but not happy about the hips so those two things kinda cancelled each other out in his opinion. We'll miss him when we move because he is quite good. I'm hoping that Nebraska has some good medical professionals because we're coming soon and we need a lot of them!

Ehler's Danlos Syndrome

If you are a regular reader here you know that Hannah is EXTREMELY flexible, like you can take her thumb and bend it sideways to lay it flush with her wrist kind of flexible. She also has really flat feet and her feet collapse outward significantly. An orthopedist had been watching this since she was about 18 months old using the wait and see approach. Last October when Hannah starting complaining of pain in her hips we were back to the doctor again and she was given AFOs for her shoes and pronounced at the extreme edge of normal as far as joint laxity. The doctor called it hypermobility syndrome. Well it was time for her yearly follow-up last week and I believed that Hannah had outgrown her AFOs because she was complaining that they hurt her feet which she hasn't done since getting used to wearing them last year. Besides checking out the AFOs the doctor completely reevaluated her because of some concerning trends he had noticed in her gait. Because she's heavier now her ligaments are under even greater strain and her feet, ankles, and knees are showing the stress and are starting to show the effects of over compensation. It was hoped that her ligaments would tighten some with age and that the AFOs would be a temporary thing. Unfortunately, things did not improve. In fact, they got worse. After the evaluation the doctor informed me that Hannah had a mild form of a genetic disorder called Ehler's Danlos Syndrome. I don't know much about the disorder yet, but from what I understand it is mainly a defect in the production of collagen. Because the collagen is defective ligaments, blood vessels, skin, and anything else made of collagen are suspect to problems. So far, it appears that Hannah really only has issues with her ligaments and skin, but the doctor wants her to probably go see a cardiologist in about 6 months to get a baseline idea of her heart health in case any issues crop up as she gets older. There is no cure for Ehler's Danlos unfortunately, but the symptoms can be treated individually. So, Hannah had her AFO's adjusted, thank heavens she hadn't outgrown them since they cost $600 a pair and are NOT covered by insurance. She is also going to have to wear something called a Dennis Brown bar at night for 6 moths to a year (then she'll be reevaluated to see if it's helping or if she'll need surgery). I am SO NOT looking forward to this bar. It is basically a pair of shoes attached to a metal bar that holds the legs in a fixed position. They used to be used for infants a lot in past generations to correct bowlegs, in toeing, etc, but now they are basically a thing of the past and I can find absolutely NO information on them being used in a child as old as Hannah. Everything I have read about them show them being used on immobile kids. In fact, the idea of kid Hannah's age using them is so far fetched that when I went to order the special shoes that have to be bolted to the bar, the medical equipment guy had to look through several manufacturer catalogs before he found a place that even made Hannah's size (size 12 in case you were wondering!). Hannah hates wearing shoes and we have a hard enough time keeping her in her shoes during the day so I'm dreading trying to get her to wear what look like very uncomfortable shoes at bedtime. To make matters worse, she's a belly and side sleeper and with this bar she will have to sleep on her back. She also wakes at least once a night to go to the bathroom and I'm not sure how she's going to let us know she's awake if she can't get up out of bed and walk to the door to knock on it like she does now. We are definitely going to have a big learning curve here soon once the shoes come in. Wish us luck.