First OT Session

Hannah finally had her long awaited first OT session and it was glorious. I am so excited and hopeful for what is to come. The OT introduced us to a technique that she felt would be beneficial to Hannah called The Wilbarger Brushing Protocol and joint compressions. When she first did it to Hannah she visibly relaxed and just seemed more comfortable than she had been all morning (it was another rough morning!). She kept requesting that we do it more and more and gladly sat while I did it to her before nap time. Once again she seemed much more calm after the brushing. The technique uses this funny looking plastic brush with flexible bristles. What I am supposed to do is firmly brush up and down her arms, hands, legs, and back with the brush every two hours and follow each brushing session with joint compressions to her wrists, elbows, shoulders, hips, knees, and ankles. I think Hannah likes the joint compressions the best. I am really hoping that this will help Hannah and that today wasn't just about the novelty of it for her. I'll keep you all posted on how she's doing. We are also going into the OT facility on Monday to try out several of their swings. Another possible thing we might try is something called therapeutic listening. I don't know much about it at this point, but the OT thinks it also might be helpful for Hannah. I'm game to try anything that might help. I'm going to do some research on the therapeutic listening though since I've never really heard anything about it.

Here's my autism blogger for the day Good Fountain. She writes about her daughters Charlotte (formerly known as Chee) and Sarah (formerly known as Ess). Charlotte is currently in the process of receiving an autism spectrum diagnosis. She brings up many wonderful thoughts and emotions related to dealing with parenting a child on the spectrum as well as one who is neurotypical. She always makes me smile. Go check her out.

Pneumonia AGAIN

Yes, Hannah has pneumonia AGAIN! The poor little thing seems to be a magnet for bacterial pneumonia. This is the 7th time she's had it in the past 2 years. Her most recent case was only 2 months ago right after her surgery. UGH! Besides the pneumonia, this time she also has a partially collapsed lung. That scares the begeezus out of me. The urgent care doctor says we don't really need to worry about it unless she gets worse, but I'm worrying anyway. Scarring also showed up on this most recent chest x-ray. The radiologist said it was from past cases of pneumonia. I worry that all these cases of pneumonia are going to permanently damage her lungs and I'm also concerned about WHY she gets this pneumonia all the time. What is causing her to be so susceptible? I know that Tiffany (Hannah's birthmother) has severe allergies and asthma and Chase (Hannah's brother) battles croup and ends up in the ER for breathing treatments from it frequently, but neither of them get pneumonia. Please pray for my little girl that she recovers quickly from this and that we can get hooked up with a pediatrician here quickly and get to the bottom of all of this. On a side note, I am also sick. Somehow I managed to get strep throat and pinkeye. Thankfully Hannah didn't get either of those from me and Kyle seems to have mostly escaped it too.

Lately Hannah's defiance and sassiness has gotten out of control. She is blatantly disobedient and speaks very disrespectfully to us. It's like she's 2 going on 16! We've tried several traditional systems of behavior management and discipline, but nothing really seems to work well with Hannah so we are going to go out on a limb and give one of the more unusual methods a try. It's called the Nurtured Heart Method and was pioneered by Howard Glasser. Kyra at This Mom first introduced me to this method. At first pass I thought it sounded fine, but that it was not my kind of thing. It was way too involved for my way of thinking. However, as things slowly spiraled down hill after our moved it became apparent that Hannah needed something more. It couldn't hurt to give Nurtured Heart a try. So I checked the book out of the library and set to work reading it straight through. We are all set to give it a try as soon as Hannah is feeling better. Wish us luck. If you want to know more about the specifics of Nurtured Heart, click on the link to Kyra above. She's done an excellent job through several posts of the basics of Nurtured Heart and how they've applied it at their house.

Here's my autism blogger of the day Full Soul Ahead written by Michelle. Michelle's oldest daughter has Asperger's Syndrome. She writes about daily life as well as some of Riley's challenges. They are currently in the process of getting an autism service dog for Riley and she has written several wonderful posts about how service dogs can help those with autism. Check her out. She's a great read.

Sweet Giggles

Yesterday Hannah and I went to the library for story hour. The story time starts out with several stations of toys and activities for the kids to do as they choose. Then after the activity time comes the actual reading of the stories. Yesterday there were 17 kids plus their accompanying parents at the story time! ACK! That was a lot of people and A LOT of noise. Hannah did ok though. She mostly stayed around the margins of the group and did her own thing. She played and did activities and was next to other kids, but didn't give them much interest. Still, she shared the space without seeming too anxious and didn't automatically vacate whatever area she was in when another kid showed up to share the activity. A few times she went off to play behind the bookshelves alone where it was quieter and less crowded. I think that was a good thing. Hopefully she was self-regulating. That's what it seemed like anyway. During the stories her eyes were glued to the librarian and she shouted out the answer to every question asked. All the other kids were fussing and fidgeting and talking, but not Hannah. She only had eyes for the story. After story time officially ended, the room cleared out, but 4 parents (and their kids) stayed behind to talk. I chatted with them since Hannah wasn't quite ready to go yet. Once the room quieted down Hannah became much more animated and lo and behold she started to actually play with one of the little girls! I was practically in tears watching them. This little girl was 4 and quite shy herself so she gave Hannah plenty of space. She was interested in letters and numbers and "intellectual things" in a preschool sort of way which is also the kind of stuff Hannah likes to do. The two of them stood shoulder to shoulder at an easel discussing how to spell their names and how old they were. Hannah taught Sophia how to write the letters in her name and the two of them just stood there and wrote and drew on that board for a half hour! I could hear them giggling and see them both smiling. It was AMAZING!!!!! Hannah looked so happy and comfortable in her own skin. That's a sight we rarely see around other kids. I was thrilled. I ended up getting the contact number of Sophia's mom so that hopefully we can set up some play dates for the girls. I want to capitalize on any interest Hannah shows for another kid and this little girl seems just perfect for Hannah, just the kind of friend she needs! :)

On Monday Hannah had a really rough day. REALLY ROUGH. Hour long meltdown. Lots of hitting and yelling. Defiance out the wahzoo. Still, somehow we made it to therapy to meet with the autism whisperer. While there Hannah played with the speech therapist while I was able to talk with the woman and get some really helpful ideas about how to deal with Hannah's meltdowns and how to age appropriately teach her the consequences of those meltdowns. She behaved beautifully during my session with the whisperer, but when it was time for us to leave and everyone was gone she had another huge meltdown. She took off like a rocket away from me and I had to sprint after her down a long hallway that lead to the elementary school housed in the building. I ran past parents in the lobby waiting for their kids to get out of therapy, the receptionist, and a whole lunchroom full of teachers, aides, and students eating lunch from the elementary school. The funny thing is that in any other place I would have been getting all manner of disapproving looks and possibly mean comments as I chased Hannah down and tried to wrestle her out of the elementary school and back to our coats, but here I got nothing but acceptance. I heard comments like, "She's just making sure you get your exercise for today." "She must really love it here since she doesn't want to leave." and even a "Been there. Last week I ran down that same hallway." That just goes to show you what a difference awareness makes. Not awareness that autism and other disabilities exist, but the awareness about what it's like to live with it and manage it. I might have been in tears and possibly mortified by this public meltdown if it had been any other place, but here I didn't feel the need to explain or apologize or make excuses. I just nodded and kept on at my job of corralling my daughter. No one thought I was being rude. They just accepted. It was wonderful.

Now for my autism blogger of the day The Incipient Turvy. M is an adult living with Asperger's. He was not diagnosed until adulthood and has been spending the last several years sorting things out. He's candid about his experiences and occasionally posts transcripts of therapy sessions he's had. It's a great read and I encourage you to check him out and tell him I sent you!

What We've Learned

For those of you who are new to the blog, I'm going to give you a brief rundown of our story, Hannah's story and then I'll go into my thought for the day about autism and link to another one of my favorite autism blogs.

Hannah is 2 1/2 years old. She has Asperger's Syndrome (on the autism spectrum) and Sensory Processing Disorder. Hannah is extremely high functioning and also very bright. She began reading at 2 years old and has a crazy vocabulary. People often have a hard time believing that she has autism unless they've spent a lot of time with her and know her very well in multiple situations. Though this is wonderful because it means that Hannah is high functioning and that she is coping relatively well with her challenges, it also leads people to be less tolerant when she is having challenges because instead of seeing a child with special needs who is struggling they see a child who appears to be older than she really is (drat that big vocabulary and the 95th percentile in height!) who is behaving unacceptably in their eyes. They see a child who is spoiled and who needs more discipline. They see a child who is rude. They see parents who allow this misbehavior to continue. They see parents who coddle their child.

This leads me to what Hannah's Asperger's and SPD has taught me. I've learned to be less judgemental and more tolerant of other children and parents. I've learned that there just might be more going on than appears on the surface. I've learned that maybe that parent or that child is doing the best they can and maybe they could really use an understanding smile and an offer of help. Every time I get that "look" in a restaurant or store I think about how I used to feel before I was a parent when I saw a child in the midst of what appeared to be a tantrum and I think about how I've come full circle. I won't lie and say that I don't occasionally get angry at the "giver of the look" for thinking anything other than wonderfulness about my daughter, but in general I just feel sorry for them because they have no idea, no idea what it's like to parent a child with challenges outside the norm of a typical child and ignorance is never a good thing. That's why it's important for us to raise awareness, but not awareness in the way that the media and several high profile organizations do using scare tactics and sensationalism. Not programs and articles warning parents of the evils of vaccinations or the blame and finger pointing, instead we need awareness of what it's really like to live with autism in all of it's forms, from the mild to the severe. We need awareness of how individuals with autism (and the people who love them) feel when they are ridiculed or discriminated against. We need awareness about the fact that many families cannot afford the therapies that would most benefit their child because many health insurance companies do not cover therapy for developmental delays. We need awareness to the fact that there is little support out there for adults with autism to lead productive and independent lives. We need awareness about the fact that those with autism are often excellent employees because of their attention to detail, respect for the rules, and intense loyalty and should be sought after for employment instead of shunned in the workplace. What we need is awareness that if the world was just a little more tolerant of all kinds of differences then we'd all be blessed beyond belief through the relationships we could form if we gave them just half a chance. Now, what you've all been waiting for, another one of my favorite blogs Diary of a Mom. If you want to hear some real inspiration check out this post and this one and this one that she wrote. She frequently brings me to tears with her eloquent tales of life with her two daughters, one on the spectrum and one not.

Now, moving on to the point of this blog, Hannah! Since the move (well always really, but especially since the move) Hannah has been having a difficult time with all the transitions that occur throughout the day. Simple things (to me anyway) like just getting out of bed and getting ready for the day, stopping an activity and sitting down to eat, getting ready to leave the house, and going to bed really throw her for a loop. Because these are all things that happen pretty much every single day, it's been a huge roadblock in our life. So, we've started using picture schedules to get her through some of the rougher spots in her day. The early intervention agency printed up and laminated for me some picture symbols (affectionately called PECS by those in the special needs world) that stand for the individual steps needed to complete the routine that is difficult for Hannah. I cut them out, put Velcro on the back of each square and attached the other piece of Velcro to a clipboard. Now as Hannah completes each step of the process she pulls off the task and starts on the next step. Though Hannah is able to remember and verbalize all the steps needed to get through each routine, she has trouble actually focusing and staying on task long enough to complete them without going into a meltdown. This schedule helps her visually track what she's done and what she still has left to complete before she's "free" to do her own thing. It lets her see that the end really is in sight if she can just stay on track. If she makes it through the entire schedule (for going to bed the tasks are PJs on, brush teeth, wash face, brush hair, go potty, get into bed) and is compliant with each step and no meltdowns then she earns a penny to put in her money bag. Once she gets 25 cents then she can use her money to ride the horse ride at Walmart. So far we are seeing more compliance and a greater sense of responsibility with the picture schedules. They aren't a miracle cure, but they do seem to be helping. Tomorrow we meet with the autism specialist, whom I've been calling the autism whisperer-a term I ripped off from Mama Mara another fabulous autism mom blogger, for the first time. I am cautiously optimistic that she will be able to give us some insights into Hannah's behaviours and some ideas on how to make her more successful as well as more at ease in social situations. The bad thing is that the meeting is at 11:00am, lunch time for Hannah. The whisperer is only at the center twice a month and every other available time slot was booked for the month. If we didn't take this appointment then we'd have to wait until May to have our first meeting and I really didn't want to wait that long, especially since we only have until July (when Hannah turns 3) to make use of her services. I want to be able to suck every last bit of knowledge out of her head that might be helpful for Hannah that I can while I have the time. Please keep your fingers crossed that I have success altering Hannah's eating schedule so that she will cooperate during the appointment.

Yesterday Hannah experienced what may just be her idea of the best day of her life. We started off the morning by going to the mall. She loves to people watch. She's all about people in theory. She loves to observe them from afar and even interact with highly approachable adults. It's just kids that she doesn't want to interact with. She got to get her feet measured at the shoe store and tried on practically every shoe in the store while we waited. She adores getting her feet measured and trying on shoes. I'm not sure what the appeal is, but hey, it's good cheap fun. Then we had lunch at the food court. She got to do some more people watching and even see a birthday party in progress. The food court at this particular mall has a full sized indoor carousel. Hannah had never been on a merry-go-round before, but desperately wanted to give it a try. We decided to let her have this special treat and she was in heaven. We haven't seen her look so relaxed since we moved. The constant up and down motion of the horse and the spin of the carousel was just what her body was craving. We ended up letting her ride it twice. After the mall we headed to the local zoo. It was a free day for city residents so even though it was cold and windy we decided to give it a try. Hannah is a definite animal lover so she had a blast at the zoo and we even got to watch two snow leopards fighting and see the elephants come when they were called by name by the keepers when it was time to close the zoo for the night. After the zoo we explored the park further and found that it had an amazing playground and ANOTHER indoor carousel. Our zoo pass got us a free ride on the carousel so Hannah got another turn on the merry-go-round as well as some much needed heavy work on the playground. After the playground we came home and had dinner then headed to the pool to try out her new arm band floaties. She was cautious at first about not having something or someone to hold onto in the pool, but soon grew to like the freedom it gave her to move around in the water unassisted. All in all she had a great day and ended up falling asleep before I even left the room. I truly believe it was her idea of a perfect day.

Autism Awareness Month

Today is Global Autism Awareness Day and April is National Autism Awareness Month. Several of the blogs I read have already begun to post entries that highlight some of the most crucial points that the general public needs to learn in order to make life for those with autism better. As the month progresses I intend to link to several of my favorite autism blogs as well as highlight some of the things we have learned from our brief (officially) stay on the spectrum. The most important thing we have learned is that autism is a spectrum. No two individuals on the spectrum present the same way and range from mildly affected and high functioning (Asperger's Syndrome) to severely disabled and unable to perform basic self care or even communicate verbally (severe forms of classic autism). Autism is commonly referred to as ASD (autism spectrum disorder) in the medical community and is a pervasive developmental disorder. It is neurological and is not something that a person can grow out of or be cured of. With treatment, significant improvements can be made, but the individual will always struggle with the challenges of their disorder. That's all I'll say today on autism, but stay tuned for further facts and personal anecdotes from our experience living with Hannah's Asperger's. Here's my first blogger writing about autism. His name is Cale and he's a college student living with autism himself. His blog is awesome and has tons of great information about autism. So, without further ado, I present to you Spectrum Siblings.

The past several weeks have been really rough for Hannah in the sleep department. Instead of getting better the longer we stay in the apartment, Hannah is having more and more trouble getting to and staying asleep. For most of her life Hannah has disliked going to sleep and has always seemed to sleep much less than other kids her age. Starting at around 6 months of age her sleep issues started. She began resisting sleep more and more. Once she moved from her crib to a big girl bed things got even trickier. To her normal screaming and crying she added banging on her door with her hands and head. She has wonderful stamina when it comes to resisting sleep and could go on for hours (her record is 3 hours 15 minutes after which I put a end to the torture-both hers and mine!). Once arriving in the apartment Hannah added a new trick to her repertoire-deliberately wetting her pull up to get us to come in and get her a dry one and take her to the bathroom. You might say, "how can you know it's on purpose?" The reason I know is that every time she had been taken to the bathroom only minutes before, she has not had a waking accident in ages, and the accident always happened within two minutes of us walking out the door of her room without fail. It was most definitely deliberate. Once that trick ceased to get the desired response she upped the ante. Next came deliberately having a poop accident. She hasn't had a poop accident expect for diarrhea attacks due to antibiotics since she became potty trained nearly a year ago! This was most definitely deliberate as it happened right after us leaving the room as well. Finally, her most recent tactic is making herself throw up on the carpet right in front of her door! She's done this twice now. I'm pretty much at my wits end. Things absolutely cannot continue like this, but I don't know what else to try. Reasoning with her, cracking down hard, just ignoring her, we've tried them all over the past 4 weeks and none seem to help. I'm sure this is somehow rooted in the move, but I'm not sure what to do about it or what the real issue is. Has anyone had something similar to this happen after a big transition such as moving or a new sibling? I'd welcome any advice you could give me. Please, just no suggestions such as a consistent bedtime routine or soft music. We are sleep issue veterans and have tried just about everything over the past 2+ years and this is not your average sleep problem. This is new even for Hannah.

Since we've been in Rhode Island our entertainment has been a bit different than what we are used to and it's been limited to what I've managed to find in my limited exploration. We've spent the most time at the Children's Museum which Hannah calls the adventure museum. She LOVES her adventure museum and asks to go to it practically every day. We've already recovered our membership dues twice over and we've only been in the state for just under a month! Though she's being exposed to lots of kids there, I still haven't been able to persuade her to interact with any of them really. We'll keep working on it though since she really does have a ton of fun going there. Another thing we have been doing quite regularly is going swimming in the pool here at the apartment. Hannah loves watching Kyle do dives into and out of the water and really wanted to be able to do a "dolphin whale" AKA a dolphin dive herself. Since she has tubes in her ears she's not able to go under the water without ear plugs. I ordered her some plugs and a band to go over them to keep her from picking at them and we waited eagerly for them to arrive. Hannah desperately wanted to be able to go under so we checked at the front desk every single day until the coveted package arrived. Hannah was so excited to put her ear plugs in and go swimming that first day. We took her down and she immediately wanted to go under. Once she did she was not keen on doing it again. Though we prepped her extensively about not breathing in while under water and taught her how to take a deep breath before going under, she came up sputtering and flailing from her brief under and up dunk. I figured it would not be a happy experience given how upset she gets when water gets into her eyes in the bath, but we gave it a try because she REALLY wanted to be like daddy. Another fun activity that Hannah has been enjoying is helping us prepare meals. She loves it so much that losing the privilege of helping, even if it's just pressing the buttons on the microwave to heat up leftovers, is the ultimate punishment. Unfortunately it's not enough to create a positive change in behavior, but it certainly makes her fighting mad!

Hannah is anxiously awaiting the arrival of the Easter Bunny. She's sent a constant barrage of questions towards me about the particulars of what the Easter Bunny does and how he does it. Since the bunny visited her last year and hid eggs around the house (and yes she does remember hunting for them even though she was only 18 months old!) she is convinced that the Easter Bunny lives in Indiana and will have to fly on a airplane to get to Rhode Island to hide her eggs this year! It made me laugh the first time she told me that, but my laughter has not deterred her from her insistence that the Easter Bunny will be arriving on an airplane. She's also informed me that the Easter Bunny is like Santa since he comes in secret at night. Since he is like Santa we will have to leave him carrots to eat like we left cookies and milk for Santa and carrots for Santa's reindeer. That little girl never ceases to amaze me.

Rhode Island Early Intervention

We finally managed to get the ball rolling here in Rhode Island to get Hannah hooked up with Early Intervention services. In Indiana, Hannah only qualified for developmental therapy through the early intervention agency. Here in Rhode Island they don't even HAVE developmental therapists. So, they did some modifications to her IFSP (Individual Family Service Plan) and what she ended up getting instead will be even better than what she had in Indiana (although it would be hard to beat Kimberly, Hannah's former DT). Here in Rhode Island she qualifies for OT (occupational therapy), speech, a once a month autism specialist, family training, custom made social stories and picture schedules, and a whole host of group therapies that we can pick and choose from at will. Some of the groups we have to choose from are music therapy, social skills playgroup, sensory playgroup, swim therapy, and a speech friendship group. ALL of these services are available to us free of charge which is amazing to me. In Indiana Hannah's DT was covered through a governmental cost share program based on income level. We had a copay, but it was pretty minimal and since Hannah only had DT we never had to pay more than $24 a month out of pocket. In Rhode Island we don't pay a dime. When Hannah's service coordinator said that she was scheduling Hannah for speech I initially thought she was crazy and wondered if she had been paying any attention at all to Hannah's vocabulary and pronunciation the two visits she had made to our house. I later learned that Hannah's SLP (speech language pathologist) is a specialist in autism and on addressing the social use of communication that causes problems in many people with Asperger's. The good news is that Hannah really hit it off with her and I liked her quite a bit too. She seemed to really love kids which is always good! We haven't met her OT yet, but we should be able to start up with her sometime late next week. Overall, I am pleasantly surprised about the services Hannah will be receiving. Hopefully it will end up being as good as it sounds. Speaking of therapy, Hannah's former DT, Kimberly, has been helping us out this week long distance (and also free of charge) to try to get Hannah through this transition as easily as possible. We already miss Kimberly dearly. She has done so much for Hannah that all the money in the world would not be enough to thank her for how much better she has made Hannah's life. We are hoping to see her again at the end of April though. She has a conference in Rhode Island (how convenient huh?) and said she'd love to hook up while she's here! YEAH!

Lately Hannah has renewed her interest in numbers. This time her fascination lies in addition, subtraction, money, and weights. She loves for me to pose simple story problems for her to figure out and she's pretty good at solving them too. The other day she sat for almost an hour studying coins and asking me to quiz her on the names and values of each coin. By the end of an hour she pretty much had them all memorized with the exception of the dime which she consistently called a diamond! I'm not convinced that she has the concept of coins mastered yet, but then I wouldn't be surprised as she's managed crazier things before. The Children's Museum here in Providence has an area with various period style rooms depicting life at various times in Rhode Island's history. One of Hannah's favorite rooms is a general store/diner that has pretend produce that you can buy. The store has a working produce scale and old fashioned cash register. Hannah loves to weigh the produce she's buying and report the weight back to me, then run around to the cash register and punch the number of pounds of produce she is buying and then watch the cash drawer pop out.

Today was a rough day for Hannah. Every little thing sent her into a crazy meltdown. By the time we made it to lunch time, both Kyle and I were about spent. We decided (who knows what possessed us?) to take her to McDonald's to eat and play in the play place. Typically a social situation like a play place wouldn't be a good idea on a day when she was already having meltdowns, but I don't think either of us wanted to take her back to the apartment and muddle through several more hours of insanity. The meal was difficult, as was expected, and we almost aborted the mission before ever letting her play, but somehow we made it through and we turned her loose on the play place. Thankfully it wasn't too crowded, but there were enough kids in there to give her some social opportunities. Hannah hung back for awhile and then latched onto some older girls (probably around 10 years old) who must have thought she was cute and were willing to talk to her and listen to her talk. Eventually the girls tired of Hannah and wanted to play with each other, but Hannah didn't know how to let them be. I felt bad for her following them around talking and them just ignoring her. I really can't blame the girls. I mean what 10 year old wants to play at a two year old's level? Still, it was heartbreaking to see the confusion on Hannah's face because she just didn't get it. A little bit later there was a little girl who we thought was younger than Hannah that was having trouble climbing up the tower platforms. She was a couple of inches shorter than Hannah and she couldn't quite reach. Kyle encouraged Hannah to help her and after some initial hesitancy Hannah really took to the task. She tried picking the girl up, pushing her bottom, hoisting her knees, pulling her hands, anything she could think of to get the little girl up. Eventually the girl figured it out on her own and the two of them climbed up to the top together. While they were still in the climbing process Hannah did a very good job explaining verbally and visually demonstrating to the girl just how to climb up and down the structure. I was VERY proud of her. Once up, Hannah, who had had her tongue loosed during the climbing demonstration, chatted happily to the little girl. They played and climbed together for probably close to a half hour. Eventually, though, the little girl tired of playing with Hannah and tried to leave. Hannah, bless her little heart, didn't want her new friend to leave. She grabbed the little girl around the waist and said, "You can't leave without me!" The little girl firmly replied, "I can go down by myself," and proceeded to go down the slide. Poor Hannah just seemed confused again. I think it was inconceivable to her that someone might be done playing with her before she was done playing with them. Though not perfect, the play place experience was one of the most successful we've ever had. Hannah got some really good social practice, exercise, and had fun in the process. YEAH! We learned later that the little girl was actually 3 1/2, a full year older than Hannah, even though she was considerably shorter and much less sophisticated and clear verbally. The funny thing is that Hannah also thought she was younger because she referred to her as the little baby! That just makes me smile when I think back about it. :)

Last week we tried out the church that we think we will make our church home (at least initially anyway). We'll be heading back there again tomorrow and with the rough day that Hannah had today I'm more than mildly concerned. First, this church does not have any Sunday School on Sunday mornings. The entire congregation, including children, meet together in the sanctuary for announcements, prayer, and worship. This lasted 30-45 minutes last week. Hannah initially enjoyed being included and liked the singing and special music (she spent quite a bit of time attempting to dance in the aisle), but got really antsy as the first section of the service progressed. I'm worried about her having a meltdown tomorrow as I try to keep her quiet and contained until they release the children for Children's Church. I'm also worried that if she does have a meltdown, besides how hard it will be to deal with in the middle of people who know nothing about us or Hannah's challenges, it will make her less likely to cope effectively on her own during Children's Church since she'll already be on edge. Last week she did just fine during Children's Church, but had a HUGE meltdown as soon as we got back to the car after picking her up after service. Please pray for us that she'll have a good experience during both services and enjoy herself so much that she'll look forward to it each week.

Houdini

It seems we have a little Houdini on our hands. Hannah has finally managed to thwart the child locks on the door knobs. In our old house we had a dutch door on Hannah's room. Kyle turned the bottom door knob around so that the lock was on the outside. This way we were able to keep Hannah in her room during naps and safe at night when she might otherwise be up roaming the house and getting hurt unsupervised. At the apartment none of the bedrooms have locks and even if they did, we did not have the luxury of turning the knob around since it's not our door. So, we put a door knob cover on the inside of Hannah's bedroom door to keep her in her room. She hadn't figured out how to use one yet so we figured this would do the trick of keeping her safe. I was especially concerned about her getting out of her room and then opening the apartment door and going who knows where without us knowing in the middle of the night. This worked for about a week. Then Hannah decided to start playing with the cover and accidentally got one of them off. We found her in our bedroom one morning as a friendly wake up call. We replaced the cover and considered it a fluke. Well, it wasn't a fluke. She became increasingly skilled at removing the door knob cover from the door and getting out. It got to the point that we could not keep her in her room at all. Bedtimes became an even bigger battle than they normally are. We were at our wits end. Then I decided to go down to the Lobby and ask the concierge for some help. I explained the situation and our fears and asked if it would be ok for Kyle to remove the bathroom door knob and switch it with the bedroom door knob in Hannah's room and turn it around the wrong way. I promised we would return them to their correct places once we moved out and would pay for any damage that occurred because of the switching. He said we didn't have to do it. They would have maintenance fix us right up that afternoon! They really do treat their residents nice at this place! Maintenance was at our apartment in less than an hour to do the job. When I opened the apartment door the maintenance man said, "I'm here to lock a kid in their bedroom." I about died I was so embarrassed. What if people really do think we are horrible child abusing parents who lock our child in her room for days at a time?!? Then he cracked a smile and started laughing. I let out a huge sigh of relief. Then Hannah came out from behind my leg and the guy looked mortified. He said, "I didn't know she was there. She's probably going to be scared out of her mind now." I said, "Nah, she's used to being locked in at night!" It ended up not being possible to switch the door knobs because they weren't the same type of knob so he ended up putting a chain lock on the outside of Hannah's door. Now it really does look like we are abusers! It does the trick though. Hannah can only open her door about an inch now. There have been no further escapes and I have been able to rest much easier now knowing that she's not up devising a way to beat the night lock and get out of the apartment.

Though Hannah seems to be sleeping more peacefully when she is actually asleep. There's no more snoring which is awesome. She is still having a really hard time falling asleep and staying asleep. I'm sure some of this is due to the transition to the new apartment, but I'm not sure if that is the whole reason or not. She's been taking Melatonin for awhile now and I was hoping that would do the trick. I think I'd like to increase her dose to see what that does, but I don't want to do that until I'm sure she's settled into a routine here. The problem is that as soon as we get settled here we'll be moving again to our house and the transition will start all over again. So, I'm hesitant to make any changes to the Melatonin until we are settled into the house. An interesting side note about the Melatonin, when I went to purchase it after the developmental pediatrician recommended it I discovered that it only came in pill form. The bottle stated that it needed to be swallowed and not chewed. Up until that point Hannah had only ever taken liquid medicine. I had no idea how we were going to get a pill down her. The first several times it was a big fiasco. It reminded me of trying to give a cat a pill-prying open their mouth, holding down their tongue, dropping it straight down the throat, and then clamping their mouth shut so that they can't spit it out! There was much gagging, tongue thrusting, and digging out of soggy half dissolved pills. However, it didn't take long for Hannah to get the hang of it. Within two weeks she was a pro. After a month she was even able to take the pill independently although she still prefers for me to drop it in her mouth for her to swallow. This just blows my mind. Are 2 1/2 year olds supposed to be able to take pills? Isn't that why they make chewable children's Tylenol? Hannah's always been a good medicine taker. I'm sure some of this has to do with the fact that medicine is just a routine part of our house. She sees me take many different pills each day so I guess for her taking a pill is just what people do. She's always wanted to do anything that is considered a "big girl" thing-hence her early transition to a twin bed, ditching the high chair early, and beginning potty training on her own at 18 months so maybe that's why she worked so hard to learn how to take pills. She just wanted to be like Mommy. I sure hope I'm not raising a little addict by her already having the ability to pop a pill like it's no big deal.

Hannah has finally learned how to have some independence in the new bathrooms here. She devised a way to reach the toilet paper and has perfected her balance on the large hole in the seat while tearing it off. She still can't wash her hands independently because the counter tops are just so darn high, but being able to wipe by herself is a plus anyway. Yesterday she was taking a long time in the bathroom and I went to see why she hadn't called for me to come help her wash her hands. When I got to the bathroom the door was shut. This was unusual in itself, but when I went to open the door I discovered that she had locked herself in the bathroom! I went into full blown panic mode in about 5 seconds flat. My mind was racing wondering what she might get into and how she could hurt herself and what if she wouldn't unlock the door and let me in. Might I have to leave her alone in the apartment and go down to the lobby and ask the maintenance people for help (I don't know the lobby phone number, but I'm planning on finding out today!)? Would they have to remove the door from it's hinges? Then finally I got ahold of myself and I just calmly asked Hannah to unlock the door so I could come in like it was no big deal and amazingly she did as I asked. I've never been happier in my life that she obeyed! We had a big conversation after that about how she should never lock the bathroom door because it's unsafe and while she's at it why don't' we just leave the bathroom door open or at least cracked from now on. She agreed so let's hope we don't have any further incidences of her locking me out of the bathroom.

Why?

Hannah has officially entered the "why" phase. She asks why after almost everything I say, questions, commands, and statements. It's about to drive me crazy. I was so close to saying, "Because I'm the mommy, that's why!" today. Today at lunch I ate my pasta in a bowl instead of on a plate and she asked me why I was using a bowl. I said because I just felt like a bowl today and she answered why. This cycle went on for several minutes. I thought I was going to scream by the time she finally gave it up.

Another thing that she's been doing lately is asking permission to do things that she doesn't need permission at all to do-multiple times in a row and from both Kyle and I. For example, here's a conversation that happened the other day, "Mommy, can I go get my baby doll?" "Yes, Hannah. You don't have to ask when you want to play with your doll. Just go get her." "Daddy, can I play with my baby doll?" "Yes, Hannah. Mommy already told you that you could." "Mommy, can I play with my baby." "YES!" "Okay." and then she trotted off down the hall to get her baby. I have no idea why this started. Usually she doesn't ask permission for anything and she still doesn't ask permission for the things that she really SHOULD be asking permission to do. Toddlers can be so weird sometimes. I say toddler, but she's two and a half. Is that still a toddler? When does a kid move into the "preschooler" category?

Today I took Hannah back to the children's museum and we had a great time. We stayed for 3 hours. She wanted to stay for longer, but we needed to go home for lunch and I knew she needed a nap too. She didn't really interact with any kids at all, but at least she began to get more comfortable with the museum. There were a few times when we had to go off into one of their book corners and read a book to regroup because she was starting to get overwhelmed, but I thought it was understandable since there were two different school groups there and the kids were big, rowdy, loud, and very pushy. I needed a break from them and I don't have a problem with crowds!

Poor Hannah is really missing her toys and other things from our house that are in storage right now. I think she's going into withdraw from not having her kitchen set and play food, her tools, and her barn and horses. She keeps asking me where they are. Today when I told her they were in storage she said, "Let's go get them!" She wasn't very happy when I said that we couldn't get them until we moved into our new house. She's also been asking a lot to go back to her old house. Earlier in the week she said, "I don't want to stay in the apartment anymore. I want to go back to my old house." It about broke my heart. It's hard to explain to a 2 year old about job security and why we can't just go back to our old house. She's a smart girl, but she's not THAT smart.

Hannah finally noticed the train station outside our apartment and started hearing the trains blow their whistles as they come into and leave the station. Every time she hears one she drops whatever she is doing, shouts TRAIN! and runs over to the window to watch. Yesterday we walked over to the train station to check it out. I thought we might actually be able to see the trains inside the station, but unfortunately you have to have a ticket to go downstairs to where the trains board and unboard. Hannah did get a kick out of the pigeons that were walking around inside the building, however. She really wanted to pet them, but since I'm afraid of birds I wouldn't let her get close to them.

PS. The first picture is the view out of our other apartment window!

Public Toilets, Hand Dryers, and Garbage Disposals OH MY!

Public toilets, hand dryers, and garbage disposals. Sounds like a motley crew doesn't it? They are on Hannah's current list of deathly fears. She's had an on and off fear of automatic flushing toilets flushing on her bottom and super sonic hand dryers for quite awhile, but I thought those had pretty much passed. The garbage disposal, however, is a new one. With all three evil appliances it seems to be the sound that bothers her at the moment. That's another thing that seems weird to me because although they are quite loud, she's never had a problem with loud noises before and right now it seems to only be those 3 particular loud noises that bother her. She's to the point that she about won't even go in a public restroom for fear of a loud toilet flushing or a chance meeting with a hand dryer. When the toilet flushes she runs across the stall as far from the toilet as she can get and either buries her head in my legs or squishes herself into the corner. You'd think I was chopping her hand off if I try to dry her hands with a hand dryer instead of paper towels. AND if Kyle turns on the garbage disposal in the apartment (which is REALLY loud, much louder than the one at our old house) she will run and hide and bury her face in her hands. Since all loud sounds don't bother her and two of her current fears appear to be reincarnations of old ones, I am inclined to believe that these are normal everyday toddler fears instead of a new manifestation of her SPD, but I don't really know. They are quite intense fears and the public bathroom ones are really starting to interfere with her life since she has quite a small bladder and it's almost impossible for her to successfully hold it until we get home if she happens to have to go pee when we are out somewhere. Those of you fellow SPD moms out there, what do you think? How should I handle this? We've got to get past the public bathroom phobia somehow, but I'm out of ideas. Do I be supportive or is that just enabling her fears? I don't want to be a psuedo anti-NERD (see Mama Mara's post here).

I just really want her to not be so freaked out about things she's bound to continue to come across in normally everyday life.

We are continuing to struggle with Hannah's behavior. She is so defiant it amazes me. She's always been stubborn, but she's taken it to a whole new level recently. It appears as if she almost WANTS to get in trouble or lose privileges sometimes. Her disobedience is so willful that I have a hard time wrapping my head around the fact that she's only 2 1/2. I've only seen this kind of attitude in teenagers before. I know defiance and disobedience are par for the course in terms of normal toddler behavior, but Hannah's current behavior seems a bit extreme to me. It always seems that everything about Hannah is just a little bit "more" than the typical kid, that she's just a lot more intense about everything-both the highs and lows if that makes any sense. She's hyper focused, while at the same time extremely distractable, extra curious, extra hard to get to sleep, more intense emotions and reactions to others' emotions, perfectionistic, obsessive about all things academic, extra set in routines, very inflexible to change, etc. The list could go on and on. For every typical toddler trait it seems that Hannah is just a little bit more of it than all the other kids. In some instances this is awesome, for example in the case of her already being able to read and do basic addition and subtraction. In other instances it's absolutely awful like when she bangs her head repeatedly off the coffee table when she accidentally writes a third "N" in her name instead of writing an "A" and she's used a crayon so she can't erase it. I repeatedly pray for patience with her every single day, but it seems as if my patience is always so thin. I know she's struggling too and that makes me feel even worse when I loose my patience or when I don't know how to handle a situation. It seems like lately there are more situations that I don't know how to handle than ones that I feel confident that I handled appropriately. The current thing that pushes me to the limit faster than anything else is this screech Hannah does when she's upset or being asked to do something that she doesn't want to do for any reason at all. She'll make it when I ask her to do something, when I touch her to guide her towards an undesirable activity, or when I ignore whining or a tantrum. That sound cuts straight to my bones because it is almost always a result of intentional disobedience and she will even make the sound again if I react to it at all. She KNOWS that it bothers me and it's almost like she enjoys pushing my buttons with it. It seems ridiculous to me to place her in time out simply for a sound she makes after she gets a warning about something, but it's basically sassing in my opinion and I don't know how else to handle it other than to use the sole weapon I have against unwanted behavior-the time out. If anyone at all has any ideas for how I could handle this another way since the time outs seem to be having no effect, I'd welcome the suggestions. I'm pretty much at a loss and could really use some help.

On a positive note, we took Hannah to the Providence Children's Museum yesterday and she had a blast. At first she was pretty overwhelmed by all the activity and kids running everywhere, but by the end of the morning she was splashing in the water, playing with the science toys, and playing house in the different "time period" houses. It was hilarious watching her cooking food in a kettle in a fire place while in the 1860's kitchen replica. She put the kettle in the fire place and then reached up to the mantle and pretended to push several buttons while saying, "beep, beep, beep!" I just about peed my pants laughing. I think we will end up getting a membership to the museum because it's super close to the apartment and only like 15 or 20 minutes from our new house once we move there. I can totally see us going there at least once a week. I could see it really being good for Hannah to be in an environment that can stimulate her academically while also challenging her socially. Maybe just maybe I could meet some new mommy friends there too.

PS. The last picture is the view out one of our apartment windows. I'll try to post the view out the other window in my next post.

We Made It

Well, we finally made it here to Rhode Island. It was a long hard trip with its fair share of tantrums and meltdowns, but we made it none-the-less. Physically Hannah seems to be doing great and got the all clear from her ENT to resume her normal activities. Today we went swimming and she had a blast. It was really good for her to get some heavy work in, especially after 3 straight days in the car! We've been in behavior boot camp the last two days which hasn't been fun for any of us, but it's needed. She got so much leeway after her surgery and while we were packing and moving, that a huge rein in was really needed to get things back under control. I'm sure it's going to take some time. I just hope I can stay patient.

I think it's going to take some time for us all to adjust to apartment life. As far as apartments go, this is a nice one, but we are right downtown so it's loud. Hannah is constantly asking, "What's that sound?" Our view is amazing for being in the city though. Out one window we can see the whole city and out the other we have a huge view of the capitol building. There is a train station across the street that Hannah hasn't really noticed yet. Once she does, I'm sure this will be a big hit for her since she loves trains. We are totally going to have to ride on one at least once while we are here. We were pleasantly surprised with the size of the apartment. Our bedrooms are HUGE. I've never had such a large room in all my life. Hannah's bedroom here is bigger than our master bedroom was in Indiana. We also have two bathrooms which we weren't expecting. The bad thing about the bathroom is that Hannah can't reach the toilet paper while on the toilet and also can't reach the sink even while standing on a stool. I've become used to her having some independence in the toileting department so having to help her much more than I'm used to is a pain, but I'm sure we'll come up with something. An interesting side note regarding potty training, Hannah was dry all night and during her naps for 4 days/nights in a row. This morning she was wet when she woke up, but I still think 4 dry nights is a good start. I really expected a pretty big regression in potty training because of this move and all the transitions she's dealing with. I definitely did not expect the 4 dry nights in a row, especially since she's only been dry through the night once or twice before this.

Besides getting Hannah's behavior in check and her sensory diet back on track, the next big goal on this move is to get Hannah set up in the Rhode Island Early Intervention program. Hopefully we can get OT started soon and maybe find a social skills group. We also have to start the process of finding new doctors for her (and for us for that matter). That is something I am not looking forward to. We've been so fortunate thus far to have had great doctors. I'm worried we aren't going to get that lucky again.

Rough Weekend

It's been a tough weekend in the Spontak house. Since Hannah is still at risk for bleeding after her surgery and because of her pneumonia she's not allowed to do much activity. This poses a BIG problem since most of her sensory diet revolves around proprioceptive input-jumping on the trampoline, swinging on her bar or us swinging her around, spinning, running, carrying or pushing heavy stuff, etc. These are not only on her sensory diet, but they are her favorite activities. She's such a sensory seeker that it's almost torture for her to be banned from them (for both her and us). Since her sensory needs are not being met she's been in rare form as far as behavior is concerned. We've been dealing with LOTS AND LOTS of hitting. Usually it's not hitting for any reason in particular, just a way to meet a sensory need that is normally met elsewhere. Tonight she was crawling and lunging all over me on the couch and just being wild. I felt so bad for her. It's hard to know where to place the limit. Hitting is not allowed. She knows that. We enforce that. BUT when she can't meet her needs any other way because we aren't allowing it. It's so difficult to see her struggle. It's like she simply can't control herself. After each and every time out she can easily tell us why she got the time out, but it doesn't do anything to deter future incidents. Top everything off with the fact that she feels crummy and her entire world is disrupted right now as we prepare to move and you've got a recipe for disaster. I've found myself with less patience than I should have because I'm also stressed about the move and how it is/will affect Hannah and that lack of patience is the exact opposite of what is needed right now. Please pray that after Hannah's follow-up appointment with the ENT on Wednesday she will get the go ahead to resume normal activities so that we all don't go crazy!

Big Move Updates

We traveled to Rhode Island shortly after Hannah's surgery. Not great timing, but we had to do what we had to do. My mom watched Hannah and did a great job of caring for my sickly little girl, but it was so hard to be away from her for so long. I had never been away from her for this long before. While in Rhode Island we looked at well over 40 houses and ended up finding one we liked, putting an offer on it, and having the offer accepted before we got on the plane to fly back home to Indiana! It was a crazy, but productive 5 days.

The past two days have been insanely busy as we finish up the final tasks related to selling our current home and moving. The movers come to pack up the house on Wednesday and load the truck on Thursday and then on Friday, one week from today, we begin our journey East. We'll have to go to a temporary apartment for about two months before we can close on our new house, so most of our stuff will be in storage since the apartment is furnished. I'm concerned about how Hannah will handle not one, but essentially two moves in two months. Right now she's pumped for the adventure and can tell anyone who asks her about how first we'll live in an apartment that will have a pool and a shower and then we'll move to our new house, but the reality I'm sure will be harder for her to adjust to. Please pray for us that we all make it through the ordeal unscathed and relatively in tact!

Recovering

It's been a week and a half since Hannah's surgery and she's still in the recovery phase. The surgery itself went great. It lasted a bit longer than expected, but she came through fine. She had a rough time coming out of anesthesia and got a bit violent, but apparently that's not too unusual for kids since they are so disoriented. It was planned ahead of time that Hannah would be admitted overnight at the hospital for monitoring so we were quickly taken up to her room. Her room was awesome. It was private, had two flat screen TVs and came complete with room service for both Hannah and Kyle and I. Hannah slept for a few hours and then woke up seriously thirsty and hungry. Over the next several hours she drank tons and downed 2 bowls of jello, a Popsicle, a bowl of macaroni and cheese, and a pancake. She was doing so well that the doctor decided that she did not need to stay overnight after all. They released us and we got home about 7pm. We had only had to be at the hospital for 13 hours instead of 36! YAY!



Hannah began running a slight fever the next day, but the doctor stated that as long as it stayed below 101.5 then she was fine, but if it got higher than that then we should take her to either urgent care or the ER. Around 5pm I took her temperature again after giving the Tylenol plenty of time to take affect. Her fever was now 103.6 and she had a nasty cough. Off we went to the urgent care. There she had a chest x-ray, urine culture, and strep test. We left the office with a diagnosis of post operative pneumonia and a prescription for an antibiotic. Hannah slept fitfully that night and finally awoke at 5am on Friday with a raging fever that Tylenol once again was not bringing down. We took her temperature and it was 104.7. Off we went to the ER. We got another chest x-ray, blood tests, IV fluids, a confirmed diagnosis of pneumonia, IV antibiotics and another oral antibiotic. 7 hours later we were finally discharged.



It's been a wild ride since last Wednesday, but it could be much worse. Pneumonia is nothing new at our house, although having it right after surgery is pretty scary. Now we just wait for Hannah's little body to kick this infection and finish healing up from the surgery. She has another appointment with the ENT for this Wednesday to check out all the post op stuff and then her primary doctor wrote a prescription for a follow-up chest x-ray to be done at the end of March after we've moved to confirm that the pneumonia is gone. Thursday while Kyle supervises the movers Hannah and I will head to Riley for her psychologist appointment. Pray that she is feeling well enough that she cooperates with the testing.

Surgery

So. . . . This post is destined to be filled with LOTS of news. First off, Hannah had her ENT appointment today and it was decided that her tonsils and adenoids have to go or her apnea will most likely get worse as she (and the tonsils and adenoids) continues to grow. She'll also have tubes put in her ears to keep the fluid draining from her Eustachian tubes so that the hearing loss she's currently experiencing won't be permanent. I have to call tomorrow to schedule the appointment with the surgeon, but it will likely happen soon-most likely within a week or so. Because she's so young, the surgery won't be done outpatient like it usually is. They'll do it at the hospital and she'll be admitted for at least 24 hours after to be sure she's ok, drinking well, and staying hydrated. Do I sound calm, matter of fact, even happy to hopefully be getting my little girl some relief? I hope so. I'm trying very hard to be. BUT I'm not. I'm not in the least. I'm freaking out. The thought of my little girl having surgery, any surgery no matter how "minor" scares the begeezes out of me. Please send some prayers our way that we stay calm, Hannah stays calm, and that everything goes smoothly both during and after the surgery. I'll be sure to keep you all posted on when it's scheduled for and how she does.

Now, just in case that isn't stressful enough, here's the rest of our big news. We're moving. Not just moving like across town or even across the state, we're moving across the country-from Indiana to Rhode Island! I've been sitting on this news for about a month now, but have been unable to make it public because of Kyle's current (soon to be former once Friday rolls around) job situation. Being in limbo for so long has been stressful and now with the surgery it just got more stressful because they want Kyle to start on March 2nd, but we still have to put our house on the market, take a house hunting trip to Rhode Island, secure temporary housing, pack and move, Kyle needs to defend his Master's thesis, and allow Hannah at least 10 days to recover from her surgery! That is A LOT to do in 2 weeks. So, since we just found out about the surgery Kyle is going to attempt to negotiate a later start date citing extenuating and unforeseeable circumstances. Please pray that the new company will be reasonable and allow us the time that we need so that I do not have to stay behind alone to help Hannah recover and that Hannah will be recovered well enough to perform normally at her psychologist evaluation on March 5th.

While we feel that this move will generally be a positive thing for Hannah as far as the resources that will be available to her there, I am definitely concerned about how the actual moving and adjustment will play out. She's already on edge from our schedules being disrupted, our house being in disarray, and her sensory playroom dismantled. Two months in temporary housing might not be fun for any of us if we don't find access to things to keep her sensory diet in tact while the weather remains cold. I'm not sure a corporate housing company would be keen on us hanging a swing from the ceiling of their furnished apartment or bolting a hammock into the walls! Right now I'm praying we find somewhere with an indoor pool. It may be wishful thinking, but that would certainly make things much easier. Leaving the support network we've built up here will be hard on us all. Besides family, there are only two couples we have ever trusted to watch Hannah and who know how to handle a meltdown, we adore her therapist and don't relish the thought of having to find a replacement as great as she is, finding kids (and their parents) who will immediately "get" Hannah and her quirks and love her just the same just won't happen-it'll take time and for that I'm sad for Hannah. She doesn't make friends easily so for her to lose (at least for regular play dates) the only two she really has is heartbreaking to me. Though intellectually she knows that we are moving and is totally pumped about it, I'm positive she doesn't get just how far away Rhode Island is and that Evelyn or Addie won't be just stopping by to play anymore. :(

PS. Speaking of friends, Hannah recently hosted a "slumber party" for her best friend for 4 days and I got some great pictures. If these aren't the picture of happiness then I don't know what is. We've had a long road to get to this point, but we made it with two little ones so I know she can do it again. It'll just take time. Now, it's not all roses, shortly after both of these photos the happy moment was spoiled by Evelyn pushing the personal space issue just a tad too far and Hannah hauling off and hitting her, but those happy moments DID happen. That's a testament to the hard work both of these little ones have put in and all that they have weathered to make their friendship work.

PPS. Doesn't everyone have an old mattress in their living room for their kids to jump on? Don't even pretend you weren't thinking it! If you've ever spent a considerable amount of time with a sensory seeking kid with SPD then you'd understand.

Sleep Study

Hannah's sleep study was an absolute nightmare (no pun intended)! I will never in my life put myself through such trauma if I can help it. That being said, we did glean some useful information from it that I'll get to in just a second. First though, here's a rundown of our night just in case you were dying to know.

We arrived at the hospital a little before 8pm (already an hour past Hannah's bedtime, but that's when they start the studies). We were the only crazy people who braved the impending snowstorm to make it to their sleep study so we were alone in the sleep lab. The tech was a bit overly cheerful for my taste and definitely was not much for inducing a calm state for sleep. Her voice was loud and just a tad too fake cheerful and she constantly waved her hands around all over the place and bounced Hannah around. Hannah did AMAZING with the procedure for getting all the electrodes on her. She sat quietly and still while the tech glued, taped, and then bandaged dozens of electrodes all over her body. She'd actually been looking forward to going to the "sleep doctor" since I'd been talking it up so much in an attempt to head off any disasters so she was ready for the adventure UNTIL they put the oxygen tubes and carbon dioxide readers into her nostrils. The moment she felt those prongs being inserted into her nose big fat crocodile tears started rolling down her cheeks and she started saying "No, No, No!" in a very pitiful voice and trying to rip them out. We had to hold her arms down while the tech taped them to her face. It broke my heart :(

By 9pm everything was on her and it was time to go to sleep. At this point we are 2 hours past her bedtime and she's running on adrenaline. She continues to keep trying to pull out the oxygen and the tech seems pretty irritated about this. We go through her bedtime routine as best we can and then as soon as it's time for lights out Hannah says she has to go potty. If the tech wasn't irritated before, she certainly was then because she had to unhook all of the wires attached to the electrodes from the machine and the tubes for the oxygen and carbon dioxide so that we could walk to the bathroom. Then she had to hook them all back up after Hannah was done. Finally I get Hannah settled into the bed and I go lay down on the fold out chair in the room. For the briefest of seconds I think that she is actually going to fall asleep, but alas that was not the case. Hannah jabbers on and on to me until at least 10pm because I am in the room. If I fail to respond in some way, shape, or form she gets hysterical thinking I"m not in the room anymore and tries to jump out of the bed which is impossible with all of those wires. SO, I have to respond in order to keep her in the bed and attached to all of those electrodes. Eventually she fell asleep for almost an hour. I watched her blood oxygen level and heart rate monitor for awhile until I saw her pulse start to drop.

Convinced she was asleep, I allowed myself to begin falling asleep only to be awakened by hysterical screams of, "Mommy! Mommy! Mommy!" She was sitting bolt upright and attempting to rip the oxygen tubes out and the bandages off of her head. I flew off of the chair, tripped in the covers, and nearly did a face plant onto the tile floor as I stumbled over to her bed in the dark (I have terrible night vision!). I called for the tech (if she'd been paying attention like she was supposed to I would have thought she would have already been on her way since Hannah was the only kid in the lab she had to monitor) to come help me, but Hannah managed to get the oxygen and CO2 tubes out and some of the bandages off. The tech came in and reinserted everything and bandaged her back up. She was quite loud and didn't try at all to have a soothing voice or manner so that Hannah might not have woken fully up. She left and we started all over again. Hannah fell asleep about a half hour later and just as I allowed myself to drift off myself the screams started again. Because Hannah had to stay in the bed and keep all her wires and tubes firmly attached, I couldn't let her cry it out. I had to respond each and every time she started to get hysterical. This happened once every hour for the entire night. Hannah cycled through a 1/2 hour of sleep and then a 1/2 hour of calming down over and over again until at around 5am the tech came in and said that we should just call it quits. I spent pretty much the entire night kneeling on the tile with my arm shoved through the bed rails to keep Hannah from ripping off the electrodes or to calm her back to sleep when she settled down. I got quite adept at reinserting the tubes into her nose and extremely skilled at protecting the bandages and electrodes from her flailing arms. At one point the tech had to come in and unhook everything because she flailed around so much that she wrapped all the wires around herself and I could not unwind her and she was panicking because she could not move!

At 5am the tech came in and took off all of the electrodes and wires and monitors and sent us home. She said that Hannah had never stopped breathing and that she talked in her sleep with her eyes open and snored really loudly. I'm pretty sure she was not qualified to tell us any of that, but it is what it is. We were told it would be a week to 10 days before we had the results of the study. We had a horrible drive back home in a crazy snow storm with 3 cranky people in the car, but we all survived somehow.

Yesterday the developmental pediatrician called and gave me the results of the study. It turns out that Hannah did indeed stop breathing throughout the night several times. The study recorded what is considered mild obstructive sleep apnea as well as abnormally low levels of REM sleep. The doctor said that this may be a sign of Hannah's body defending against more severe episodes of apnea by preventing her from getting into the deeper stages of sleep where apnea usually occurs. She also concurred that Hannah does indeed talk in her sleep with her eyes open. This is totally freaky to me. Now I'll never know when she's actually awake. All the times she did it in the lab I apparently thought she was awake. The doctor referred us to a pediatric ENT (ear nose and throat doc) who will most likely remove Hannah's tonsils and adenoids as well as put tubes in her ears (more on that in a just a second). This will be done at Riley instead of locally because Hannah is so young and so that she will have a pediatric specialist for her anesthesiologist because of the apnea. Along with the fact that Hannah's adenoids and tonsils are most likely causing her apnea, they are also preventing the fluid from draining through the Eustachian tubes in her ears. She got an ear infection in early November and they have never drained since. At Hannah's hearing test (earlier the same day as her sleep study) she failed in her left ear and they of course detected fluid in both ears. They also recommended she see an ENT to drain her ears so it can be determined if the hearing difficulties are a result of the fluid or a sign of the late onset hearing loss that can sometimes occur in kids who had neonatal herpes.

Though the thought of surgery for Hannah is very scary to me, it's comforting at least to have some idea of what the problem is and to know that it's fixable. To think that she could soon be getting a good night's rest for the first time in her short life is a happy thought. It's also nice to have some validation that there was indeed something wrong instead of having to listen to countless people assuring me that I was just an over reactive first time mom and being told that no one's kid sleeps as well as they would like and that Hannah's "troubles" are completely typical.

PS. Thanks to all who sent well wishes our way before the study and who shared your stories about sleep. I really appreciated them!

PPS. Doesn't she look all cute in her bandages and wires? Even lounging in a hospital bed she's adorable! Although the head bandage to keep the electrodes in her hair does make her resemble a burn victim just a bit!