"It's Just a Phase"...

I recently gave birth to my fourth child, Matthew, and I thank God every day for the wonderful blessings I have been given.  I consider myself lucky to have both NT (neurotypical) children, as well as a child with special needs.  I believe that this gives me a unique perspective on what it is like to raise children.  I do not, however, claim to be an expert on child-rearing; I am just grateful that I am able to experience both of these scenarios.

I have always believed, and heard from other parents, that having a special needs child teaches us many life lessons.  I know that I have certainly learned a lot from Katelyn, given her dual diagnoses of PDD-NOS (autism) and psychiatric illness (psychosis).

This morning after getting Katelyn and Ashley ready for school, I had a realization that I've known for a long time, but never knew how to make sense of it or put it into words.  It seems pretty obvious now, but it came over me like an epiphany this morning.

When a parent of a "typical" child worries about their child being addicted to their binky or not being potty-trained at age 3, etc., we often comfort them with phrases such as, "Don't worry, she will NOT be walking down the aisle with a binky in her mouth," or "No one wears diapers at their high school graduation!"  These phrases imply that there is no doubt, it is a fact, that these typical children will eventually outgrow these issues, that these are in fact normal stages in life that are certain to improve over time, and in the short term no less.  The reality that "this will not last forever" helps the parents to get through the rough time, knowing they can look forward to a brighter future where binkies and diapers are a thing of the distant past.

Here's the kicker.  When parenting a special needs child, the concept of "normal" development flies right out the window.  There is no such thing as "it is just a phase" when it comes to a special needs child.  No one can offer you the same comfort that your child will not be wearing diapers at their high school graduation, or that they will even graduate at all.  For some of our children, it is an unfortunate reality that they will never outgrow these "phases."

Given that I have 4 very young children, I find myself using these comforting phrases quite often with regards to my typical children.  Ashley, 3 years old, is at the dramatic "I'm the boss" stage, and Trevor, 2 years old, is at the screaming, tantruming stage.  What gets me through the day when Ashley and Trevor are having "difficult" days is reminding myself that "this is only a phase," and that they will soon outgrow this behavior as they continue to develop.  However, I realized that I never say that about Katelyn when she is having a difficult day, which is an everyday occurrence, some days worse than others.  

Special needs kids present a laundry list of challenges, whether it be behavior, self-care, cognitive functioning, etc., and one of the hardest things to deal with as a parent of these special children is not being able to reassure yourself, or your concerned family members and friends, that "this is just a phase."  There is no such thing as a "phase" for these children. In some cases, it is obvious that the child will never be able to function independently, toilet-train, live on their own, etc.  In other cases, like ours with Katelyn having psychiatric issues involving psychosis, there is a huge question mark, a big unknown about what her future will hold for her.  Will she live independently?  Will she marry and have children?  Will she be able to attend regular public school one day and graduate?  Who knows.  In either case, I believe it is the lack of being able to reassure oneself that these day-to-day challenges are simply a phase, a stage, something that will eventually dissipate and life will be easier some day.  

Again, being a mom of both special needs and typical children, I can appreciate both sides of the coin.  I know what it is like to be able to tell myself this is only temporary, life will get easier, the kids will outgrow this, and I also know what it is like to have to face the reality that some things will never change and could even get harder in the future.  

I felt the need to share my realization, not to depress the parents of special needs children or to make parents of typical children feel pity, but to put into words what sometimes is hard to understand, even when you are living it day after day.  I hope this post is helpful to others.  It has been helpful for me to write it.

"Where There Is Great Love, There Are Always Miracles"...

Since my last post, Katelyn has had significant ups and downs. Back in June, she was again admitted to the PPHP program due to her severe aggression and self-injurious behavior. She was placed on Zoloft and her Risperdal was increased. She was then discharged in mid-July and she returned to her preschool for the last few weeks of the summer program. During this time, she had significant difficulties both at home and at school.

After the summer session ended, there was a 4-week break, during which time she was showing significant regression in terms of her behavior. It was quite apparent that she could not deal with breaks in her schooling, as evidenced by her PPHP admissions and 3-week stay at Children's Hospital, all occurring after school breaks. At this point, we were considering out-of-district placement to a school that would specialize in dealing with children similar to Katelyn, exhibiting both characteristics of autism as well as psychiatric issues. Her psychologist, developmental pediatrician, primary care physician, and neuropsychologist were all in agreement that there was sufficient reason to believe that she could no longer function in a public school setting, and out-of-district placement was recommended.

I met with the school to discuss our concerns, and they were very concerned as well. They have been wonderful to Katelyn and her family throughout all of our struggles, and they truly care deeply for her. The school psychologist and adjustment counselor became part of her team and we decided that it was worth giving it another shot at her preschool since that is the ideal place for her, if possible. Her teacher suggested that all members of her team be included on an email list so that we can all be on the same page and communicate about Katelyn's treatment, which has helped tremendously. And, boy, did Katelyn surprise all of us!

Expecting the worst, we were shocked to hear that she did well the first few days of school, and even enjoyed taking the bus again! We were still cautious, wondering if the "honeymoon period" would end like it almost always did, but it has continued! And I am so happy to report that she has drastically improved ever since! She is now playing with Ashley on a daily basis -- they are like best friends now, with the occasional fight, but nothing out of the ordinary for "typical" sibling rivalry. Just weeks before, she wasn't even able to be in the same room as Ashley, and sometimes not even on the same level of the house, without having a complete meltdown. Now she gets upset if she can't be with Ashley!

Who knows what the reasons are for her significant improvements -- perhaps her medication, perhaps the hard work and dedication of her family, school staff, and therapeutic supports, perhaps the fact that we turned our dining room into a play room, perhaps a sudden developmental growth on her part, perhaps all of the prayers and love that so many people have shared with us -- whatever the cause, it is a true miracle.

We have seen what Hell is like, believe me. But having gone through all of the difficulties over the past year, and coming through them alive and intact, we've grown stronger, and we will never, ever give up hope, no matter what obstacles may come our way in the future. We now have a taste of Heaven and we will never let it go.

(Quote by Willa Cather)

So Far, So So...

Katelyn has been in the partial hospital program for almost 3 weeks now. She likes the staff and seems to look forward to going there, but she is still struggling in many ways.

After observing her and collecting data from her family, teacher, and diagnostic tests, it has been determined that she is suffering from a severe anxiety disorder and most likely depression as well. There is most likely something else going on here in addition, but right now the focus is to alleviate some of her anxiety since she is in an insurmountable amount of distress, which is making it impossible for any other behavioral interventions to have an effect at this time. Therefore, last Tuesday, after careful consideration by her psychiatric team and family, and weighing the pros and cons, we agreed to a trial of low-dose Prozac to hopefully help get her level of anxiety to a more manageable state. This was an extremely difficult decision for us, but at this point, all other avenues have been exhausted and it is clear that nothing is going to be able to help her until we get her anxiety under control. Now, we just have to wait and see if it has an effect, which could take weeks.

We have seen some improvement in certain areas, but she still has a very long way to go. She has shown some interest in activities lately, such as doing puzzles or building towers with giant Legos. However, she still requires a significant amount of adult direction and encouragement to become engaged in most activities. She also has been smiling and laughing more, and even showing some interest in being silly with Ashley, although she is still aggressive towards her at times. Unfortunately, she is still perseverating constantly, even worse than before, asking for things over and over and over and over again for hours on end, and then screaming or becoming aggressive when she does not get immediate gratification.

Because she is so unstable at this time, we have decided to postpone her reevaluation at the May Institute until she is better able to demonstrate her true potential and capabilities. At this point, we honestly are questioning whether she truly has autism or if this is something entirely different masking itself as autism because some of the behaviors that she is demonstrating (i.e. her awareness of how her actions affect others, doing things "out of spite," etc.) are not consistent with an autism diagnosis. Even the director of the program stated that he does not feel that she presents with classic autism symptoms at this time, which is what her diagnosis currently is. Although she does exhibit many "red flags" for autism, he feels that we will have to wait and see over time how it all plays out to determine if she truly has autism or just some characteristics. So we will definitely be having her reevaluated at the autism diagnostic center when appropriate.

At this time, it is unclear how many more weeks she will be in the program, but we are trying to be optimistic that she will continue to make improvements. We are hoping that we will see significant progress once the Prozac takes effect since she is still being tormented by the level of distress that her little body and mind are experiencing on a constant basis, which is also taking its toll on our entire family. I'll continue to provide updates when I can. Thank you all for your continued support, love, and prayers.

Right Back Where We Started From...

It has been quite a while since I last posted and a lot has happened since (including the birth of our baby boy, Trevor Kyle, in January!)

In December, Katelyn had a bout of pneumonia and it really set her back. Up until then, she had been really progressing well. However, being very sick for over a week, coupled with then being out of school for winter recess, she really regressed in terms of her behavior and willingness to do things independently. Her control issues also escalated and she became even more demanding than before.

After doing some research and talking with other parents of children with autism, we decided to try a course of Nystatin since she was on amoxicillin for the pneumonia and antibiotics often can cause an overgrowth of yeast in the body, especially in children with autism. We have yet to see any improvement. In fact, as time goes on, her behavior has been getting far worse, both at home and now at school.

We are now suspecting that something else is going on in addition to her autism that is causing her to behave this way. Her teacher and therapists have never encountered a child like Katelyn and they are as baffled as we are. We have tossed around the idea that perhaps it is obsessive-compulsive disorder (OCD) or even depression that is causing her to be so demanding and controlling, but now we are leaning more towards oppositional defiant disorder (ODD). I had heard of ODD way back when I first read about autism, but at the time I did not feel that Katelyn fit that profile whatsoever. Now, however, she seems to fit it to a tee.


Here is a brief description of oppositional defiant disorder:

In children with Oppositional Defiant Disorder (ODD), there is an ongoing pattern of uncooperative, defiant, and hostile behavior toward authority figures that seriously interferes with the youngster’s day to day functioning. Symptoms of ODD may include:

• Frequent temper tantrums
• Excessive arguing with adults
• Often questioning rules
• Active defiance and refusal to comply with adult requests and rules
• Deliberate attempts to annoy or upset people
• Blaming others for his or her mistakes or misbehavior
• Often being touchy or easily annoyed by others
• Frequent anger and resentment
• Mean and hateful talking when upset
• Spiteful attitude and revenge seeking

We have been seeing an increase in aggression both towards herself and to others, especially to her sister, Ashley. Thank God she has not directed any of this towards Trevor, but I worry that it is only a matter of time before the novelty wears off. She is also starting to hit other children at school without any reason other than the fact that they walked by her. She has been increasingly demanding and controlling, and she deliberately seeks to annoy or upset others, especially me unfortunately, probably because I am the main disciplinarian since I am with her the most. She will purposely defy us, even if it means forfeiting privileges that she earned, and begged for, moments earlier. If we say yes, she says no. If we say no, she says yes. Every single aspect of our lives with Katelyn has become a constant battleground. She cuts off her nose to spite her face.

Because this is interfering with her at school and at home, we have decided to pursue psychiatric evaluation for Katelyn. Our first step is going to be getting her re-evaluated by the same doctor who diagnosed her autism. This will take place in March and we will get the results of the evaluation mid-April. We also put her name on a waiting list for a local center specializing in children's behavioral health, but they said that we will most likely not hear from them for at least two months to book an evaluation.

So now the waiting begins once again...the not knowing...the hoping that getting a diagnosis will offer some sort of help for our child and our family as a whole. We are right back where we started from when we first began this journey back in 2008, but this time it feels much different to me.

When receiving the diagnosis of autism, I threw myself into advocating for my child and learning as much as I could about autism, but this is really affecting me to my core. I cannot express how difficult it is to deal with the fact that your child may have a disorder that causes her to want to purposely upset you, or that creates such turmoil inside of her that she no longer enjoys things that she used to because she is in a constant battle within herself. I am often reminded of the nursery rhyme line: "And when she was good, she was very, very good, but when she was bad, she was horrid." And what makes it worse is that I know in my heart that this is NOT my child...this is not who she was just a few short months ago. And I will do everything in my power to ensure that this is not who she will be forever.

It's Beginning to Look a Lot Like Christmas!

Last week, my mother, grandmother, and I decided to brave the idea of taking the girls to get their picture taken with Santa. Last year, it was not a good experience and, as you may recall, I had to sit in the picture, which was completely unplanned (hence my clashing outfit, no make-up, etc.). I was determined that there was no way I was going to be photographed this year!

I had prepped Katelyn to see Santa days before so that she would hopefully not be scared of him. She was excited to see "Santa's house" and she practiced her smile with Mimi (my mother) all morning long. What I didn't expect was that Ashley would be the one who would be completely freaked out!

As soon as we arrived at the mall, Katelyn was talking about Santa. She was excited to see the big tree and all of the decorations around Santa's chair. She needed no encouragement to come say hi to Santa and to give him a high-five. Ashley also came over fairly willingly to give Santa a high-five. However, it got interesting when I tried to put Ashley on his lap. That is when the wailing began! She was not having it!

And then poor Katelyn got a little freaked out (no tears, though, thank God) and stood back from Santa and said, "All done Santa." Santa then brought out two gift boxes for the girls to sit on instead of his lap. Katelyn sat on the gift box with no hesitation. Ashley, however, refused and tried to run away. I decided to sit on the box and have Ashley stand in front of me. This worked and Ashley stopped crying. I then told Santa (and the photographer) that I was NOT going to be in the picture. Santa disagreed. He told me that there was no way the kids were going to be okay with me leaving.

Recalling last year's photo, I reiterated that I was not going to be in the photo. I told the photographer to let me sneak out before snapping the picture. Somehow, I managed to "sneak" my 8-month-pregnant body out from behind Ashley without her noticing and I quickly ran to hide behind some props. Miraculously, Ashley didn't budge and the photographer was able to snap the photo. I couldn't believe it!

After we were done "torturing" Ashley and I was choosing the photo package, Katelyn stayed with Santa, talking up a storm about her beloved Giraffe. I wish we could have gotten a picture of this moment. It was so sweet seeing her have a conversation with Santa. She has come so far in just one year and we have so much to be grateful for this holiday season.

Video of Katelyn Talking About School and More...

Katelyn loves to talk about school and gabs non-stop at home. I shot this video of her last night since she was in a talkative mood. Unfortunately, she is overly sensitive to the sound of Ashley's voice, so she gets a little upset at the end and asks for her comfort activity: A hug from Mommy.

It's Been Way Too Long...

It has been quite a few months since my last update and there is so much to catch you all up on. First, I am currently 17 weeks pregnant with our third child, which is the main reason that I have been missing in action due to morning sickness, or in my usual case, 24-hour-a-day sickness. We are hoping for a boy this time and will find out September 1st.

As far as Katelyn goes, there is so much to say that I will inevitably forget something, but I will do my best to remember everything that has happened over the past few months.

You are what you eat...
We started Katelyn on the gluten-free/casein-free diet (GFCF) back on April 28th, which basically means that she no longer eats wheat (and some other grains) or milk products. There is a lot of information on the Internet about the GFCF diet and how it has been shown to help many children with autism. There is a whole science behind the diet that I find fascinating.

After researching and talking with other parents of autistic children who have seen positive results, we decided it was worth a shot. Some of the immediate improvements that we noticed shortly after implementing the diet were less "stimming," a significant increase in speech and language skills, improved behavior (specifically less aggressive behavior towards Ashley), increased social awareness and interaction, increased focus, and a happier demeanor overall.

It certainly was not easy to start the diet, but once we found substitutes for her favorite foods, it definitely got easier. And for those of you who think that your child would "starve" if you tried this diet (I used to feel this way!), just know that the kids who are very picky and only eat certain foods, especially those who limit themselves to gluten and milk products, are usually the ones who will benefit from the diet the most. Of course, vitamins and supplements need to be implemented in order to ensure that certain nutrients, such as calcium, are not deficient.

A few of my favorite sites are GFCFdiet.com, TACA.com, and of course my favorite message board, which has been a lifesaver in so many ways. I also highly recommend the book, The Kid-Friendly ADHD and Autism Cookbook, which not only explains the scientific reasons why the diet works, but offers many great recipes!

Let's get things moving...
Katelyn had been having chronic diarrhea for months, so we decided to take Katelyn to a pediatric gastroenterologist just to be sure that there was nothing serious going on. Well, it turned out that she was severely impacted all the way up to her stomach, and the doctor said that she was probably like that for six months! He then performed an upper endoscopy and colonoscopy, took biopsies, and cleaned her out completely. His immediate suspicion was celiac disease, but he needed to wait for the results of the biopsies.

Two weeks later, we went back for followup and found out that she does not have celiac disease, but she is lactose intolerant. Also, an x-ray revealed that she was once again impacted all the way up, despite being completely cleaned out two weeks prior. The doctor said that it appears that she has very slow motility of her bowels, or that they simply do not "move" like they should. He prescribed Ex-Lax and Miralax to help her bowels function properly. Two weeks later, we returned and discovered that although she was still impacted, it was not as severe as previously, so the doctor is hopeful that the medicine regimen is working and asked us to return in one month, which will be in September.

On the same page...
We had Katelyn's IEP meeting (special education) for preschool back in May and it went extremely well. The school offered us everything we were looking for and are completely on the same page as us when it comes to our concerns for Katelyn. They also agreed to contract with one of our existing ABA providers for the summer, which has been great! We couldn't be happier with our relationship with the school thus far!!!

The wheels on the bus go round and round...
Katelyn attended preschool for the summer session and it was a great success! There were two sessions offered, one specifically for kids with autism and one "regular" classroom that included kids with IEPs. It was decided at her IEP meeting that she would benefit the most from the regular classroom rather than the autistic classroom because she is so verbal now and she has already come so far with her ABA therapy. Katelyn really enjoyed the summer session and loved riding the school bus! She asks for school (and the school bus) all of the time and is excited to go back! I'm excited for her to start school in the fall also!

In September, she will be attending the same preschool full-time with the same teacher, who is absolutely amazing! She will spend some time in a small group setting and then other times in a larger "regular" classroom with peer models. We are very optimistic that she will have a successful school year!

Braids, Barrettes, and Balls...

This morning I decided to braid Katelyn's hair. Katelyn thought it was great and asked for "more braid" and began to pull on her hair. Since she had pulled some strands of hair loose, I decided to put a barrette in her hair. Well, that was all it took to bring out the girly girl in Katelyn! She began demanding more and more barrettes! I finally had to say it was enough because otherwise she would have the entire box of barrettes, clips, and scrunchies in her hair all at once :)

Later on while the girls were napping, I decided to bring up Katelyn's old ball tent/tunnel set that she hasn't seen in about a year. The thing is huge, so I only assembled the ball tent and two tunnels. When the girls got up from their naps, I brought them over to the tent. Katelyn immediately became ecstatic and wanted to get in there and play. Ashley also was very interested, so I plopped her right in the middle of the tent.

The girls had a blast, Ashley sampling every colorful ball and Katelyn going in and out of the tunnels. Katelyn also learned to "shoot hoops" with her bumpy ball.

It is indescribable how rewarding it is to see the girls playing so well together. As Ashley gets older and is able to interact more with Katelyn, Katelyn is becoming more and more interested in her baby sister. And of course, Ashley absolutely adores her big sister; her smile lights up the room when she sees Katelyn. Nothing beats seeing my two girls sharing special moments together, making memories that will last a lifetime.

Chalkin' It Up...

Today, Katelyn, Ashley and I went to my friend Melissa's house for a playdate with her two daughters, Mia and Megan. Mia is a few months older than Katelyn and Megan is only a few months old. I wasn't sure how Katelyn would be since we hadn't been to Melissa's house in over a year. When we first arrived, Katelyn met their dog, Fenway, and she said, "Tucker," who is her uncle's dog. Then Fenway began licking her face and rubbing her and Katelyn clenched her face and said, "Okay, okay, doggie, okay!" It was the cutest thing.

Katelyn was much more interactive with Mia than I had expected. She even played dinosaurs and blocks with her, and shared some snacks. We then went outside since it was such a beautiful day today. Mia brought out some sidewalk chalk and started drawing on the driveway. Katelyn hadn't used sidewalk chalk before, but she went right over and took a piece and began drawing nonstop for a good while. She used different colors and was really focused. I then asked her to draw a circle and she did, which is huge since she usually only draws straight lines. Then I asked her to draw a heart, square and triangle, and she did those as well!

She and Mia collected sticks and played with the wood chips and then it was time for us to leave. Overall, it was a really great day for all of us!

Swing, Swing, Swing...

Since Katelyn is obsessed with swings, we decided to purchase an indoor swing for her that she can use on a daily basis, since we cannot go to the "boo wing" (blue swings) every day. We ordered the Rainy Day Indoor Playground from http://www.adaptivechild.com/, which specializes in toys and therapeutic items for children with special needs. The main swing is for older children (3+) and is just a piece of canvas material that you sit on, so we also purchased a toddler swing (since Katelyn still needs to be strapped in, and Ashley can also use it) and a net swing. The set also comes with a trapeze bar, but I don't think that will be used anytime soon :)

Katelyn was beside herself with excitement when Dada came home and hooked up her new swing! We had already gone to the blue swings today with Mimi, so this was an extra bonus! Once I saw her on the swing, I knew it was the perfect gift for her. I am absolutely positive that it will be used on a daily, if not hourly, basis.

Here are some pictures of Katelyn enjoying her new swing:

Ashley even got a chance to try it out when Katelyn wasn't looking ;)

A Whole New World, A Whole New Girl...

Now that Katelyn is back in this world, she is improving so much, and in so many areas. Her speech is flourishing, her play skills are growing, and even her social skills are developing more. She actually initiated play and "conversation" with her cousins, Anthony and Lexi, who are 8 and 4, respectively. She usually follows their lead, and she normally does not approach other children, so this is a huge step! I am hopeful that she may initiate play with other children, especially peers her own age, since she usually does not even acknowledge their presence.

And she also has been incredible with her baby sister, Ashley. She loves to be around her, share toys with her, talk to her, sing to her, and more. And Ashley absolutely adores Katelyn. It is truly beautiful for us to witness this since we weren't sure if Katelyn would ever have a special bond with her sister.

Katelyn will be attending a new playgroup on Tuesdays, starting in early March, through Early Intervention. Unlike her Monday playgroup where the parents stay, at this playgroup the parents attend a separate meeting of their own in another room. This is specifically designed to help children get ready to transition to the pre-school environment. I am ecstatic about this opportunity and I believe that Katelyn will really benefit from this experience.

Katelyn has been doing wonderfully with her ABA therapy. Aimee, her ABA therapist, said that Katelyn is so bright that she is breezing through all of the programs so quickly that she is having to find other programs to do with her! This obviously brings a huge smile to her family! We couldn't be more proud of her. Aimee said that Katelyn is very academically smart, so we are going to focus on her behaviors and social skills, as well as providing more challenging academic work as well. And of course, being the mathematician that I am, I am really excited that she loves numbers and already counts up to 10.

Overall, we have seen a drastic improvement in Katelyn recently, and this gives us hope that she will be very successful academically and hopefully socially. But the most important thing to us is that she is happy, and with each success, she is gaining confidence, independence, and most importantly, happiness.

"Coat On Bye Bye Car Swing"...

Word for word, this was Katelyn's way of telling us two days ago that she wanted to go to the park so she could swing. Given the fact that we live in New England and there was a ton of snow on the ground, I told her that the swings were closed because it was winter. Of course, she did not like that answer, and she kept on pressing: "Coat on baby's, coat on Dada's, coat on Mama's!" Saying "coat on" (usually followed by "bye bye car") is her way of saying that she wants to leave.

After listening to her plead with all her heart, Kevin and I decided why not! It actually was 50 degrees on Sunday, so despite the snow, it was a mild day (aside from the horrendous wind). We dressed the girls in their snowsuits, plopped them in the van, along with the sled, and we headed over to the nearby park. Katelyn was beyond ecstatic that we were actually going to the swings!

Once we arrived, Katelyn saw the swingset and started screaming, "Boo wing! Boo wing!" (Blue swing, because it is a blue swingset.) We traipsed through the snowy field to get to the swing. I pushed Katelyn on the swing while Kevin pulled Ashley in the sled for the first time. The girls had a great time. The best part was that it was completely Katelyn's idea and that she was able to communicate it so well.

Here are some pictures from our little snowy adventure...

More Than We Bargained For...

It is a good thing that I did not bet money on how Katelyn would respond to getting the electrodes stuck to her head because she did way better than I had anticipated! Of course, she was not happy about it, but after the first few minutes, she did great and no sedation was required. The nurses and doctors were all amazing throughout our stay. They brought in some toys for Katelyn, one of which was a tube with beads that sound like rain when they fall. This became her "go-to" toy whenever anyone was going to mess with her head (no pun intended). She would shout, "Beads! Beads!" and we would quickly distract her with the bead tube. They also wheeled in her very own DVD player so she could watch Dora as much as she wanted to, much to our chagrin :)

Things definitely did not go as planned from the get-go; there were some good and some bad surprises. They did allow Kevin to stay with me, which was a huge relief for me. Even with the two of us there, it was still not easy to be stuck in a tiny hospital room with a 2.5-year-old who demands 24-hour attention from Mama and Dada. The food was obviously not meant for human consumption, so that was quite disappointing. We ended up living on ice coffees and donuts for the most part since there was a Dunkin' Donuts in the building, thank God.

Our 24-hour EEG turned into an exhausting 72-hour EEG because, despite the fact that Katelyn was exhibiting concerning behaviors multiple times a day prior to hospitalization, she did not demonstrate even ONE single event while admitted. Isn't it ironic (insert sarcastic smiley face here). The neurologist wanted to be sure that he did all that he could to attempt to witness any seizure activity, but unfortunately it never occurred. Therefore, we are still not 100% sure that she is not having seizures, but it certainly is promising that she did not show any signs of seizures while under observation. We were really hoping that she would do that strange behavior, even if just to rule out that it is a seizure so we would know for the future, but the good thing is that she has not had one of those events since, so we are optimistic for the moment.

As if being in the hospital for three nights with a 2.5-year-old wasn't enough, the worst was yet to come. Shortly after we put her down for the evening on the last night, Katelyn started throwing up all over herself. Even poor Giraffe got his fair share. She continued to be sick until around 1 a.m., but then finally slept the rest of the night. The next morning, the doctor told us that they wanted to keep her for a few hours after her electrodes were removed, just to be sure that she was okay since she had vomited the night before and there was a GI bug going around the floor. Right as we were about to be discharged, the nurse checked her temp and it was 102. The doctor said that he would keep her if we chose, but we were so sick of being in that hospital that we decided to take her home. Unfortunately, she threw up all over herself in the van when we were only a few minutes from the house.

The next morning, I ended up becoming violently ill, and by that evening, Kevin was also extremely sick. Neither one of us were in any condition to take care of ourselves, let alone Katelyn, but we did what we had to do, even when she woke in the night vomiting again. Luckily, Kevin's parents were gracious enough to keep Ashley so that she would not get sick too. We finally seem to be on the mend now, and Ashley is finally home with us after being at Grammy and Papa's for a week.

So, all in all, it certainly was not a dream vacation, and we didn't get any concrete answers, but at least it was memorable. I'm sure we will look back and laugh at this some day.

Giraffe and Dada got "hats" too...

Katelyn lined up her animals and played with balloons...

With Mama when we arrived/with Dada on the last day...

Bad Day at the Office...

Yesterday was Ashey's 6-month doctor visit. I didn't expect there to be a problem since the appointment was for Ashley and not for Katelyn. Boy, was I wrong!

Katelyn started out okay for the first few minutes, but then she saw a man sitting in the waiting room and said, "Hi Dada." He laughed and I explained that she calls all men "Dada." Well, then she proceeds to run to him saying, "Dada!!!!!" I go get her before she leaps on him and at first she is laughing. Then she goes into a fit of RAGE! She started screaming at the top of her lungs -- I thought the windows were going to crack! She was flailing, kicking, punching, screaming "Dada!!!!!!!!!!!!!!!" and she even resorted to biting and clawing me. I was holding both of her arms so tight and she was fighting me, which was so hard. She kept screaming for Dada, but I was trying to explain to her that it wasn't Dada. He didn't even look like him! The man felt awful.

This went on for over a half hour, with the entire waiting room just looking in disbelief. I almost lost my mind. I told myself I had to keep calm because if I lost it in public, it would do no good for anyone. Finally, they called Ashley's name. I was about to go to the window and see if they would please take her sooner since Katelyn was having the worse meltdown she EVER had, and in public.

It felt awful to have her go through this, and it was certainly embarrassing to me since it happened in public, although at the time I tried really hard to ignore all of the stares. The worst part of all was that I realized that this was only the beginning -- there will most likely be MANY more days like this, and many more stares to ignore. That makes me so sad, not for me, but for Katelyn. Hopefully once she gets her diagnosis, we can proceed with therapies to help her (and me) in these situations.

Needless to say, I will never take the 2 girls to the doctor's office by myself again :)

O' Christmas Tree, O' Christmas Tree...

This is the first year that Katelyn is old enough to really appreciate Christmas...well, maybe not the true meaning of Christmas, but at least the "ites" and the "green tee" (translation: lights and green tree). She was super excited when Dada came through the front door with a giant tree. She couldn't believe it was going to be in our house! She didn't leave Dada's side until it was completely finished, clapping and cheering him on. And she even helped decorate! Unfortunately, we had some icicle casualties, but that's okay. She had fun in the process :)

Katelyn hanging an icicle...

Katelyn spotting an ornament with a giraffe on it...

The finished product, complete with crooked angel and ornament-free bottom...

Ashley supervised and gave her smile of approval, dimple and all...

Let There Be Lights...

Last night, we took Katelyn and Ashley to see the amazing display of Christmas lights at a nearby shrine. It is a family tradition of ours. As soon as she saw the lights, Katelyn repeatedly exclaimed, "Wow, ites! Wow, ites!" And as we left, she kept saying, "Bye bye, ites!" She absolutely loves Christmas lights. I knew that she would really enjoy it this year.

Here are the girls all bundled up...

These pictures do not do it justice, but you get the idea...




Tonight, Kevin was testing out a string of Christmas lights and Katelyn spotted them. She and Ashley had a blast playing with the lights...