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.

Orthopedist

Hannah had her first visit with the orthopedist here in Rhode Island. If you've followed this blog for awhile you may remember that Hannah is extremely flexible and has loose, hypermobile joints.  Last year at the orthopedist in Indiana he recommended a watch and see approach and that we have her reevaluated in a year.  Well, we couldn't really go back to that same doc so we got referred to a new one here.  I really liked the guy. He was patient, took the time to explain to me what he was doing, why, and what it all meant, and he was funny to boot.  Hannah liked him because he gave her a sucker. Never discount bribery when it comes to a 3 year old's affections.  The results of this appointment were that Hannah's wrists are quite bad. They easily dislocate, but it causes Hannah no pain when they do! I knew they were wiggly, but I didn't realize they were actually dislocating.  The rest of her joints are very loose, but on the extreme end of normal for the moment except for her ankles.  She overpronates a lot which causes her to fall often and run funny.  She also has flat feet which isn't really a problem in and of itself except for the fact that it points to the underlying problem of loose ligaments.  Because her feet roll in so badly Hannah has begun to compensate by turning her knees in and getting her hips out of alignment.  In an attempt to prevent the foot rolling from causing a domino effect up the rest of her body that will eventually lead to pain and other bones being out of alignment, the orthopedist has recommended we place Hannah in foot and ankle braces for the next year.  After a year we will see if her ligaments have tightened up enough to prevent her feet from rolling excessively.  If they've tightened then no more braces and Hannah is considered at the extreme end of normal for joint stability and we don't have to worry too much.  If they haven't tightened or if they seem worse or if other joints seem to be less stable then the doctor will be evaluating her for something called Ehlers Danlos syndrome.  Please wish us luck that Hannah will tolerate the braces since she doesn't much care for shoes or socks! Also, pray that after a year all systems will be a go to remove the braces and be done with the orthopedist. 

Hannah has been doing very well at school.  In fact, she's done so well that we are doing a trial run to see how she does going full day!  So far, so good!  The other day when I went to pick her up they were out on the playground and she was pushing another kid in the swing and then later (I stood and watched for awhile before she noticed me) she called out to one of her friends and said, "Antonio, chase me!" and he did!  She didn't just play when approached by another, she actually initiated the play!  I was so thrilled!!!!! These social skills aren't transferring yet to people she's not comfortable with, but it's a very big start I think.

Lately Hannah and I have been doing a lot of scrapbooking together.  I've really been enjoying it. Even before Hannah was born I dreamed about someday being able to scrapbook with her and I prayed it would be something she liked doing.  So far I don't have to worry. She loves to cut, paste, and punch out shapes from paper. She's actually quite good at using scissors and is very creative when it comes to designing her pages.  Then there are times when she's just content  to sit and punch out her shapes. It's good fine motor heavy work so that makes me happy too. It's a win win!

In addition to all the advances Hannah has made in her reading skills recently, she's also acquired some mad counting skills too.  So far she can count by 1s to 100, 2s to 20, and 10s to 100.  She's working on learning how to count by 5s, but for some reason they are proving trickier for her than by 2s. She's really good at patterns so I'm a bit confused about why she can't quite see this pattern, but it'll come. She's only 3 after all!

This past week was an awesome week for Hannah. It was probably the best week she's had since we moved to Rhode Island 8 months ago.  There have been a lot fewer time outs than normal, less sass, and some amazing social interactions with peers. We've revamped her sensory diet significantly and brought in two more swings for the basement (Hannah's trapeze bar/rings from her swing set outside and Kyle also made her a platform swing like the one she uses at OT) and I'm positive that's had something to do with it. Today was a little more rocky than the rest of the week, but then we were more lax about the sensory diet and her days aren't nearly as structured on the weekends as they are during the week. So, we'll see how next week goes to see if we can keep this good momentum going. 

The other day Hannah and I were having a conversation about a friend who had a baby last month.  That got Hannah thinking about babies and how they are born and parents in general.  Hannah knows she was adopted. She knows her birthparents and knows that she grew in Tiffany's belly and not mine.  What I didn't realize is that she didn't understand that not everyone has two sets of parents.  She was confused to learn that our friend Sarah was both the Mommy and birthmother to Hannah's friend Evelyn and Evelyn's new little sister Vivian.  We then went through many of the people we know and Hannah asked who each person's Mommy and birthmother was.  By the end of the conversation I think she was still a bit astonished that so many people she knew had only one set of parents!  It complicates things a bit since Hannah's brother and sister were not adopted. Tiffany chose to parent her twins, but chose to place Hannah.  Knowing that Tiffany is Kayla and Chase's Mommy and birthmother, but only Hannah's birthmother was very head scratching for her.  I think this is the beginning of Hannah starting to realize that being adopted means that she came into our family in a different way than most people come into families.  We'll just keep on having these types of conversations so that she understands as much as she's developmentally able to get and that she feels comfortable with her status as an adoptee. 

Name Change

I've been thinking about changing the name of my blog now that we are no longer in the process of adopting AND Hannah is no longer a baby. I'm not good at coming up with catchy titles (as evidenced by the current title of the blog!) so I was wondering if some of you out there with more creative juices had any ideas. Maybe I should have a contest to come up with a new title. I'm not sure how blog contests work. Is there any sort of formal etiquette or rules for this sort of thing? What on earth would be an appropriate prize (remember I'm a stay at home mommy, so I'm not made of money)? If any of you veteran bloggers out there want to help me develop a contest to rename my blog I'd be eternally grateful.

Interestingly enough, the fact that Hannah was adopted has been placed at the forefront of my mind over and over again recently as we have had to fill out and discuss medical history forms for a variety of specialists. It never ceases to take me off guard when people are shocked that we are still in contact with Hannah's birthparents and extended birthfamily. A woman (a social worker no less!) gasped today (at Hannah's meeting to begin transitioning out of the early intervention agency) when I mentioned that I could get any information I needed on the medical history form because I would be seeing Tiffany on Sunday. She said, "do you understand how UNUSUAL that is?" I was almost angry about her uninformed comment and popped off,"Well actually it's not unusual at all anymore. Open adoptions are quite common now." I'm sure the irritation I felt showed in my voice. I wish I had been a little bit more polite in my answer, but Jeez! She's a social worker for pete's sake. She should know a bit about adoption AND she should be sure she has the facts before she makes assumptions when talking to someone living open adoption.

To update everyone on all the medical stuff we've had going on lately. Hannah's staph infection is clearing up pretty well. It thankfully was not MRSA, but is was penicillin resistant so we did have to make an antibiotic switch mid treatment. She's still digging at her ears, but since we aren't even finished with her current round of antibiotics I haven't taken her back into the doctor's office. The visit to the orthopedic specialist went well. It turns out that Hannah does indeed have arches, but her ligaments are too loose to hold them up (this is also the cause of her over pronation). We got a prescription for an insert to put in her shoes. It turns out that we were right in thinking that Hannah is more flexible than the average two year old. She had 4 of the 5 clinical indicators of hyper mobility syndrome. Basically her ligaments are so loose that they allow her joints to move past the normal ranges of motion. Watching the doctor examine Hannah, it was really interesting to learn all the things her body can do that the normal body can't do. The thing that freaked me out the most was watching her thumb be bent back all the way until it was laying flat against her wrist and her not flinching at all. I bent my thumb back as far as it would go (granted my ligaments are extra tight instead of extra loose) and was in a lot of pain with still close to two inches to go until I even touched my wrist! Today Hannah bent herself in half (the pike position for all those gymnasts and divers out there) and then separated her feet and brought her legs on past her head until they touched the ground on either side of her head. Then she raised them back up slightly and began separating them until she was basically doing the splits while lying flat on her back. It almost made me ill to watch her. The good news is that as long as she doesn't complain of pain or start to have joint dislocations then we don't have to be worried about this at all.

Hannah has been enjoying the Christmas season thoroughly. I melt every time she mentions the word Christmas because she mispronounces it almost every time. She so rarely mispronounces anything that I have to cherish every instance of it that I can get. Instead of saying Christmas she says Crispex (as in the cereal!). Imagine how cute it is to hear, "I can see the lights of our Crispex tree in the window!" :) For me it conjures up an image of a tree made out of cereal boxes with tiny pieces of Crispex hung as the ornaments. She loves to point out Nativities when she sees them and has an eagle eye for Christmas lights. She's very excited about our family coming to visit on Christmas Day (every day she asks me if the family is coming) and to go see Tiffany (her birthmother), Chase and Kayla (Hannah's brother and sister), Uncle Robert (Tiffany's brother), and Grandma Donna (Tiffany's mom) on Sunday. Kayla is performing in the Nutcracker and Hannah is totally pumped about going to the ballet. She informed me yesterday after talking to Tiffany on the phone that she was going to dance with Kayla in the ballet! She may not make it up on stage (let's pray she doesn't anyway!), but I have no doubt that there will be much dancing going on in the audience during the performance. She also told me that she and Kayla would be wearing dresses, but that Chase was too big for a dress!! Never mind the fact that Chase is a boy, he's simply too big! Next weekend we will be delivering our gifts to the family we adopted through Family Services. I'm really looking forward to Hannah getting her first taste of what it feels like to be generous and help others in need. I think it's so hard for kids to understand what generosity means until you they can actually see how what they did helped someone.

Hannah's newest literary obsession is spelling. The other day she brutally drilled me at the dinner table about spelling. She started off spelling her name-first and middle and then moved on to cat and dog and then to other words she can read easily, but that I did not know she knew how to spell like up, is, it, me, go, the, see, and. She spelled each word just like our local hero Sameer Mishra who won the National Spelling Bee this year. She would say the word, spell it, then say it again. Up, U-P, up. It was so cute. After exhausting the words she definitely knew how to spell, she started asking me for words to spell. I'd give her a word and then she would attempt to spell it. After she tried I'd help her get it correct. She was really quite good at it. She would analyze each word and then do her best to phonetically spell it out using letter names and letter sounds. I was quite amazed. Her scissor skills are coming along quite nicely. I think I posted about her scissor project fascination awhile back. She can operate her scissors independently and cut right where she wants to cut although she can't always stay in a straight line. Now that we've figured out the mechanics of how to use the scissors we can work on fine tuning her control. Yesterday we made paper snowflakes. She got a HUGE kick out of snipping away at the paper and then opening it up to see what she had created. They are currently hanging on our window.

Here's a kids say the darnedest things funny story for you to chuckle about. The day I took Hannah to the doctor to have her sores looked at (the ones that ended up being the staph infection) I couldn't get her into her primary doctor so I took her to the walk in urgent care clinic down the street. Given it is the season for respiratory infections and stomach bugs, the clinic waiting room was packed. When we finally saw the doctor he had to do a biopsy of one of Hannah's sores to confirm that it was staph and to rule out MRSA. When he was done (Hannah was very brave by the way and didn't cry a bit!) he put a band aid on her bottom (that's where most of her sores are) over the one he took the biopsy from. When we walked back out into the waiting room Kyle was there waiting for us-he had stopped on his way home from work. The waiting room was even more packed now that it was past "quitting time." Hannah, excited to see her daddy and anxious to tell him about her experience, proudly and extremely loudly announced for the entire waiting room to hear, "Daddy, I have a band aid on my bottom!" Several people snickered and we got all sorts of kind smiles as we walked out. Though I might have been a bit embarrassed by her proclamation, maybe Hannah's antics managed to cheer up someone who wasn't feeling very well.

Some of the pictures I'm posting are from Thanksgiving. We spent the day at my aunt's house visiting with my mom's side of the family. Hannah was the only kid there except for my younger cousins who are in middle and high school and she lapped up all the attention. As many of you are aware, like many toddlers Hannah loves to be naked. She especially loves to be naked and running. You can guess what this will lead to in college! She might not even need the aid of alcohol to do it! Anyway, it's often a challenge keeping her clothed and Thanksgiving was no exception. My sister started snapping away as I tried to keep my little stripper from getting indecent. I failed miserably. None of these photos are posed by the way, so don't think I'm trying to create kiddie pornography or anything. Enjoy a good laugh while you observe my little streaker.

PS. Someone on another blog I read posted a picture of their daughter that they thought summed up how she approaches life. While I don't believe this picture sums Hannah up, it's a pretty fair snapshot of her approach to coping with her challenges. I was babysitting for a friend whose daughter is 18 months old. She's not super verbal, but VERY active and unpredictable like most toddlers. Hannah's not much for unpredictability so she was a bit stressed during the visit. Much of the time she spent placing physical barriers between herself and Scarlett and chewing on her hands. However, she's ever the observer and doesn't want left completely out of the action so she always had to be near Scarlett to know what she was doing. Notice in this picture Scarlett is busy, busy, busy chasing the cat and Hannah's placed herself on the other side of the filing box and is busy chewing her hands to stay calm. You can't tell in the picture, but she is also rocking herself back and forth which is another calming tool she uses. On a side note, you gotta love the 80's style head band and retro T shirt don't you?