Friday, February 26, 2010

Homework and help

Okay, so on Wednesday, ITSJC stopped by to do a Speech evaluation to see what they think they can do to help Kylie. I was really nervous because our Speech Pathologist at CMH told us that ITSJC has restructured quite a bit and is more centered around giving family the info on what to do, and less outside help for therapy.

We are both good with doing whatever we can do to help Kylie, and are ready for all that needs done. It just helps when you know that someone who knows what they are doing is coming to help you and work with you and your child. I just feel like if it was all on me then I would have all this pressure weighing down on me to getting Kylie where she needs to be, and I'm not sure how I would do if Kylie weren't progressing well enough...I would feel like I let her down, and well that would be hard to handle.

Anyway, I don't have to worry about that because Kylie will be getting therapy from ITSJC! Kylie absolutely loves her speech therapist, Michelle. Kylie got so comfortable with her, that she was putting toys on her head, and touching her hair (she loves hair...I think she likes how it feels), and then she gently grabbed Michelle's head and pulled it close to her and hugged her cute is that!

Kylie also got pretty close with our ITSJC coordinator, Susan. She was playing with her bracelet..meaning she had to touch her arm to get it off of her. That is really big for Kylie!

Let me deviate from the fun stuff to talk about the therapies. Yes, therapies! Kylie has qualified for 12 visits with Speech and OT, and then they review things again in 3 months to see how she is doing and then will see if she contd therapies are necessary (I'm guessing she will have to get re-qualified and approved for more visits if needed). That equates to therapy once a week for both Speech and OT. We may have some of the therapies doubled up, since some things overlap and that way the therapists can work together and figure out how they can best help Kylie.

I am working on getting the actual notes and scores on where Kylie ended up based on her visit with them from 2 wks ago. When meeting with the coordinator and speech therapist this week, Susan mentioned that she scored Kylie at 5-6 months on her language, so that puts her behind like 10 months (she will be 16 months next week). But the good side of it is that with her understanding so much of what we say and tell her to do, she scored at 21-24 months! What a smart cookie!!

They do believe that her being so smart is why she progressed so quickly from pointing and making sounds to pointing and screaming. She knows so much, much more than she should for her age that she has more than just single words to say...she is more or less yelling sentences and paragraphs that she can't yet speak. Wouldn't you scream too?

I never noticed this, but Michelle and Susan both noticed that Kylie doesn't really move her mouth much when she does make sounds. So that will be something to work on. They thought they may do something like putting chap stick on her lips or jelly on her top lip for her to move her mouth more as she tries to rub her lips together to get it off.

We still have to meet the OT, and that is mainly for the sensory issues that they believe Kylie has. I am anxious to see the activities and things they do to help her work through those and not be so finicky with different textures, and people getting closer to her.

Last thing is the IS study that Kylie is in. Well, part of the study is genetic testing, so that means a blood draw...not so fun, right? Right. It was quite the ordeal for the lab and registration to get everything figured out on what to do before they could do the lab draw. Once that got done (like an hour and a half later), it was off to the drawing room. I think Kylie knows what it means to walk into a room in a hospital, because she instantly started to scream. We knew it was going to be a challenge to get through it all. Matt held her down from her head, and I had her legs and her arm that was being poked. Kylie is a superstar! The phlebotomist was great, and Kylie's good veins helped too! Just one stick is all it took and we got what we needed for them to send off to the lab for testing. I guess genetic testing is quite the process, so it will take a few months before we find out anything. Who knows, we just may get some answers as to why things happened, and even a bit of closure.

Anyhow that is all. Sorry no pics, but we will try to take some before the next post. As always, thanks for checking in :)

Kisses and cuddles

Matt and I were so happy on Sunday when Kylie gave us each a kiss upon request. I had just gotten her to kiss one of her dolls, and then asked if she could give mama a kiss. I turned my cheek and she put her mouth on it and got it a little goobery! Of course I screamed with excitement, as I do with everything new thing she does...I can't help it, it is so awesome to watch her grow :) Then Matt asked if she could give him a kiss, and he gave her his cheek, and smoocheroo she did!

It was Monday morning while Kylie and I were playing in her room and she was pointing at something. I looked to see that she was pointing at the wall behind her crib. You see, I had painted a tree with a couple birds and a monkey when we were decorating her nursery. She then pointed at the letters above her crib that spell out her name. It was so great to see how much more she is noticing all the things around her, and how she wants to know what everything is. She will point and then go ''ehh", and that is our cue to tell her what something is. Awesome!

Also this week, Kylie cuddled a bit with me on the couch before bedtime. After we get her all ready for bed, she gets her paci and snuggie and then our hope is for her to quiet down and if we are super lucky, get her to cuddle for maybe a minute. Well, she is getting used to the fact that it is quite comfy on the couch in mommy's arms. I have really enjoyed that she can sit for a few minutes and we can have some sweet, quiet time together.

Kylie had such a great time at Kindermusik last night! She participated in what we were doing, playing with drums, paper lunch bags, and dancing. It was refreshing to see her complying with what everyone else was doing and joining in all the fun. Of course she also had a lot of fun running around the room and boy did she ever dance in excitement! It was definitely fun for both of us to have those silly, happy moments with her. We can never have too much of that.

Lastly, in her class they always have a time where they turn down the lights and play some soothing music, and the idea is for kids to have some quiet time and lay down with their parents. Some kids run around and look at everyone, and others do the whole quiet deal. Typically you will find Kylie running around and squatting down by others and smiling at them and kind of wondering what they are doing. Last night was a first...she stopped after a minute or two of running around and just laid down on the floor. It was cute and we were shocked. Then she came over and laid down right next to Matt. How awesome is that! We don't know if she was tired, or just realizing that it is okay to stop and have quiet time like some of the other kiddos. Either way, we were happy to see her getting it, and then doing it.

Tuesday, February 23, 2010

Can you say...

Severe Expressive Language Disorder. Well, we can say it, but right now Kylie can't. No worries, we are working on getting all of that changed.

Okay, so today was the apptmt for a Hearing Test and then the Speech Evaluation through Children's Mercy. The Hearing Test was kinda neat, where Kylie sat on Matt's lap in front of a dark window. On the other side was a woman making some noises through speakers that were on both side of Kylie and in front of her. There were also clear boxes with mechanical toys in them, and the woman behind the glass controlled those as well. The idea was to get Kylie to look in the direction where the sound was coming from.

So yeah, way different than the headsets and raising your hand like we are used to from grade school. There is no way you will get a headset on Kylie, and have her comply with any of that. She did great with that, but I guess it is just a required thing when you are there for Speech issues.

Onto the Speech stuff. Our lady said that they like for kids to have 10 words by the time they are 1 yr old, and then putting two words together by the time they are 2yrs old. Also, that in order to be putting words together they need to know at least 50 words. Umm..Kylie has zero. With that said, she is giving her a diagnosis of Severe Expressive Language Disorder, as noted at the top of the blog.

Now what? Well she gave us some great things to do, which she said are going to wear us out and probably make us go a bit nutso. Hey, whatever it takes, right? Right :)

One thing to do is so power load our sentences. (Ex. Do you want your cup? Here is your cup? See, this is your green cup? Is there water in your cup? What color is your cup? ) I think that is a good example of what she was telling us.

Also to use some sort of motivator, like a cookie or something that Kylie will want. So make her point at want she wants (motivator) and do not give it to her until she points. The idea is to make her go from screaming at something to pointing, and signing, and talking. She can not have what she wants unless she does the appropriate action. And we are to ignore the screaming...ha,ha. Anyone have a surplus of ear plugs.

Umm..what else? To take a few toys in a room and she can only play with those toys for 20 minutes. The idea is to talk about the toys for the duration of the 20 minutes. Describe the toys, and talk about what Kylie is doing with the toys. The 3 ways to describe are: describe the activity, describe where Kylie is, and describe their mood. We are not to give any sort of directions, like push the car or anything.

Pick a word for the day. Pick a word to use all day long and use that word in every way possible. You can use this word for a couple days, and then change it to a new word.

The Speech Pathologist also mentioned that when we are teaching her to sign to go from behind her, so you are showing her how to do the right motions. This way she isn't going through you to sign and looking to mom for the sign and then using it to communicate with dad. I know I have tried this a couple times, and Kylie doesn't like the help and wants to do it all herself, so this will be a bit of a challenge.

I think that is it, or at least all I can remember right now. Oh, I almost forgot. Speech Therapy. There is a wait for that....3months or so. I know, how do you get a diagnosis like Severe Expressive Language Disorder, and have a wait that long. Nothing we can do about the wait, so lots of homeschooling therapy by mom and dad until then.

K, thanks for checking in.

Monday, February 22, 2010

As of late

So....what's been going on? Well, we had a visit on Feb 10th from Infant Toddler Services of Johnson County (ITSJC) to evaluate Kylie and see if she qualifies for services. Our doc from the Cleveland Clinic ordered for Kylie to have Speech Therapy and Behavior Management. Even though we have orders, the folks from ITSJC are still required to do an evaluation of their own.

They will be back on Wed (Feb 24) to do the Speech Evaluation. I think it will be shortly after that when we know what/if she qualifies for through their program. I am really anxious to know where we will go from here. I have emailed our ITSJC coordinator since the visit on the 10th, and she said she thought they had several things they could help us focus on. I'm not sure if that means things for us to do with her, or things they (ITSJC) will be actively helping us with. So yeah, a bit more waiting to find out where we go from here.

In addition to getting things set up through ITSJC, Kylie will also be evaluated at Childrens Mercy. Our apptmt for the the Speech is tomorrow, and is expected to last 2-3 hrs. Oh my, it will be a long day. Kylie is used to getting a nap around 9:30, and our apptmt isn't until 9am. Let's just hope that the new environment and toys at the hospital will be enough to keep her well entertained.

Secondly, we have an apptmt for the Developmental/Behavioral stuff on May 3rd. I know, it isn't real soon, but they are really booked up. We are trying to work on getting it moved up, because my goodness...I can't imagine how well we will survive if we have to wait until then. I mean, the fact that the doc ordered this is because it is necessary, and a few months of waiting could mean things will be that much more difficult for us to begin working on getting Kylie on track.

Let me enlighten you all on what I am referring to. Okay, so Kylie has reached a place to where she has begun pointing at everything and saying "oooh, ehhh" or something to that effect. I was so excited to see her pointing things out and wanting us to tell her what more things are. Anyhow, that has quickly turned into her yelling and screaming at everything she points at or does. It is draining to say the least. We are trying to figure out what she needs help with and what she is wants to tell us.

This isn't the typical fussing and screaming that most parents go through when their child wants something that they can't have or whatever. This is our little girl that is having a hard time understanding things and communicating things to us. She should be saying a couple words by this point and have more consonant sounds, and she doesn't.

It just breaks my heart, because the last few days she screams at everything. I so badly want her to really get things and grasp new things better. In the past we would notice that she would get frustrated by not knowing how to work a new toy or make it do whatever she was wanting it to do. We would try and help her with it, and when she wouldn't allow that we would have to put it out of her sight, otherwise she would just continue to scream in frustration and then throw it, and whatever else was in reach.

Right now, she is getting frustrated and overwhelmed with more than just trying to manipulate a toy, she is screaming at books, and the tv (which always has to be on, or she screams), and flash cards, and everything she touches.

We have also both noticed that in her Kindermusik class she has become less interested in what is going on around her and the other kiddos. She would rather run the room and not be part of what is going on. That makes me sad...makes me wonder what's going on in her little head, and what she is feeling, and why.

So yeah, if we could speed up the Developmental/Behavioral apptmt that would be AWESOME! We need help with finding out how to best work with her so that she can continue to learn, and grow and develop, and have the same opportunities as every other little kid out there. We also need to figure out how to manage the Stereotypies, and determine if most of hers are triggered by something and if so, how to redirect her to doing something else.

I know the sooner we get started, the better chance she will have to be where she should be. I want to see that growth. I feel like we have been at a standstill, but its like I didn't notice it until, I feel like we are going backwards a bit.

So yeah, super anxious to get started on helping our little mama ( I think I call her that more than I call her Kylie) get where she needs to be.

K, I don't like to post with no pics, so here are some from our snow Valentine's Day. We thought we would take her out, and once again she didn't really care too much for the snow.

The last pic is my favorite! I love the eyes, and the start of a smile, and just the beautiful little girl that she is.

Tuesday, February 16, 2010

A friend for life

It was on Valentine's weekend that we got the chance to meet Sophie and her family! For those of you who may not know, Sophie is an amazing little girl that battled IS and had seizures for 3 yrs and then had a subtotal hemispherectomy to gain seizure freedom. She is doing fantastic and has made such a vast improvement in her learning and overall development since her surgery....she is an inspiration to those who know her and her story.

I'm not sure if her mom, Elaine, knows this...but her blog was the first one I found that helped me learn more about IS and she offered such great support to me, as I was trying to figure this stuff out.

So yeah, getting the chance to meet everyone was more than meeting a family with a similar was meeting the people that gave us hope and the strength to know we would get through things one way or another.

Sophie is simply an absolutely Amazing little girl! It was so wonderful to see her interacting with her parents and family and just getting to know them. I followed their story from that first time I found their blog, and it was so refreshing to meet this little girl that has just pushed forward so much. Nothing is going to stop her...she is remarkable!

She could not have done it without the help and support from her family...they are everything she needs and so much more! The support system they have is undeniably the best questions asked, everyone is there to help and do whatever they can to help Sophie and her family every step of the way.

Wow, you know how amazing this little girl is and her family, parents Elaine & Brandon, siblings Haley, Elsa, & Charlie. We got to meet a lot more of the family, and there are lots of cousins and aunts and uncles and they were all so kind and welcoming. Grandma Debbie is Extraordinary!...I can't stress that enough. I talked with her for a bit and she just really gets all of this and is ready and willing to do whatever she can.

Here are some pics that snapped when we were all together. Elaine and I exchanged the pics we each took, so this is what I got after sorting through them all:

Matt, Kylie, Sophie, Brandon (girls with their daddies)

A pic of Elsa and Kylie decorating cookies for Valentine's Day.

This is a bear that Kylie found and she had to sit at its feet and climb all over it. If you even tried to pull her away she would scream, so we spent some quality time visiting with the bear.

When we finished our dinner Brandon came over to get Kylie out of her highchair and we were wondering what her reaction was going to be....typically it is not good when a new person tries to pick her up. It was amazing! She not only let Brandon hold her, but he carried her on out around all the other kiddos and she was so content and comfortable! I wanted to remember this moment , so Matt snapped a shot with Elaine and Brandon holding Kylie.

It wasn't just a couple minutes after that where Sophie wanted Matt to hold her. Here is a pic of Matt with Sophie. Matt was trying to be silly and really do a big Cheese for Sophie...well, as you can see he looks like the big cheese :)

Here is a group shot of all of together before we headed home for the night.

I love these last few pics. Sophie is just such a sweet and awesome little girl. Sophie gave us hugs goodbye and I wanted to cry when she gave Kylie a hug and a precious is that!

I think that was one of the best little hugs I have ever received! We fully intend to head out to St. Louis sometime this Spring or Summer to visit the zoo and meet up with everyone again.

I'm certain Kylie and Sophie will be friends for a long time to come. Who knows maybe even BFFs one day :)

Sunday, February 14, 2010

Love Bug

Just wanted to wish everyone a Happy Valentine's Day with lots of love!

Where did all thIS come from?

I recently read a book that was titled When Bad Things Happen to Good People by Harold Kushner. I figured it was pretty fitting with all the things that had happened to our princess, and then in turn to us as a family.

I'm not sure what I was expecting out of reading this book, or how the author's view holds true to that of the Bible, but it brought me comfort...something so many of us need when we are faced with life's tragedies. That's all we really need when the unwelcome things in life strike...comfort and questions asked.

Note: my personal comments will be in purple and the author's words will be italicized.

In part of the book the author talks about the story of Job and how his friends had come to visit and comfort him. They didn't exactly offer much for least not in Job's mind. They judged him and told him that he must have done something wrong and told him that he shouldn't cry and complain so much.

Umm..this doesn't exactly sound like the support that anyone needs. They genuinely believed they were helping him, but they were really just causing him more pain and anguish.

He wanted them to tell him that he was in fact a good person, and that the things that were happening to him were terribly tragic and unfair.

It is hard to know what to say to a person who has been struck by tragedy, but it is easier to know what not to say. Anything critical of the mourner ("Don't take it so hard," "Try to hold back your tears, you're upsetting people") is wrong.

When you are going through something so tragic, so painful... those tears and emotions are yours and no one can take that from you. You have the right to feel, to grieve.

The last thing in the world he needed was to be told that what he was doing was wrong. Whether criticisms were about the way he was grieving or about what he had done to deserve such a fate, their effect was that of rubbing salt into an open wound. Job needed sympathy more than he needed advice..."

I love that last quote...Job needed sympathy more than he needed advice.

Onto another part in the book.

As the author was beginning to write his book he was deliberating about what he wanted the book to say to people when they experience something so tragic in their lives. You see the author had a son named Aaron and they noticed he just wasn't growing the way he should and that his features were small. After some doctor visits he and his wife came to learn that Aaron had progeria and wouldn't be like everyone else and we wouldn't' live long. He died when he was just 15.

So this book isn't just the opinion and beliefs of one man, but of a man who lost a child and suffered a great so many others. Here is what he thought his book should say:

It would have to say that no one ever promised us a life free from pain and disappointment. The most anyone promised us was that we would not be alone in our pain, and that we would be able to draw upon a source outside ourselves for strength and courage we would need to survive life's tragedies and life's unfairness.

How his experiences and the loss of his son have forever changed his life:

I am a more sensitive person, a more effective pastor, a more sympathetic counselor because of Aaron's life and death than I would have ever been without it.

I have noticed that I too have become more sensitive to pretty much everything and so many things have a greater meaning to me. The littlest things that so many take for granted are what I hold close. I feel so much safer when it is just the 3 of us, because we know and understand the things we have been through better than anyone who has not been there, and not tried to fully understand it.

So yeah, I'm still working on trying to let go of that safety net, but it is Very difficult because of that heightened sensitivity factor that I've can't blame me for that and if you do well, then maybe you can join Job's friends that like to judge and tell him not to be so emotional.

Back to the book. The author points out how so many of us blame God for making these things happen to us, and then forcing us to ask ourselves "what did I do to deserve this?" This is where I like what the author has to say about all of that and how it has helped me cope.

He is limited in what He can do by laws of nature and by the evolution of human nature and human moral freedom.

God does not cause our misfortunes. Some are caused by bad luck, some are caused by bad people, and some are simply an inevitable consequence of our being human and being mortal, living in a world of inflexible natural laws. The painful things that happen to us are not punishments for our misbehavior, nor are they in any way part of some grand design on God's part. Because the tragedy is not God's will, we need not feel hurt or betrayed by God when tragedy strikes. We can turn to Him for help in overcoming it, precisely because we can tell ourselves that God is outraged by it as we are.

So maybe the author just tried to find a way to make himself feel better about all the pain that he has endured in his what, isn't that a good thing? I mean shouldn't we try to find ways to cope and get through the worst times in our life...I sure think so. I think it makes sense makes sense to me and gets me through things when I stop to think where all thIS came from.

"Does that mean my suffering has no meaning?"

We could bear nearly any pain or disappointment if we thought there was a reason behind it, a purpose to it.

We find life's disasters upsetting not only because they are painful but because they are exceptional.

It is so much easier to deal with things when we know the reason behind it all, or if we suspected that it were going to happen. Kind of like cause and do this and then this is the result. The unknown is the most difficult to accept and handle. We all want answers...answers that we can accept and can make sense of.

I really like this next part.

When you are standing very close to a large object, all you can see is the object. Only by stepping back from it can you also see the rest of its setting around it. When we are stunned by some tragedy, we can only see and feel the tragedy in the context of a whole life and a whole world.

There is so much truth in that. Another truth is the fact that often it takes a long time to be able to step back from the object and see the whole picture, and there are also moments where you step even closer to the object and have to begin again. That is just part of it all...part of what we go through, what others may not fully know or understand, or even want to be around because the process can go on for what seems like forever. We may never fully see what is beyond the object and the picture, because you can't forget that object, especially when it holds so much of where you have been and who you are now.

Thursday, February 11, 2010

Kylie's 1st Valentine's Party at Kindermusik

Kylie had her first Valentine's Day party last night! Something I have been looking forward to for a couple weeks now...why? Well, because it is something we get to share with her, and well...I get to bake treats for her friends :)

Since it was a busy week for me, I made Kylie's Valentine treats on Monday, decorated them on Tuesday, and then packaged them up with her Valentine cards Wednesday worries, they were still yummy for last night :)

Kylie was dressed in hearts and fun colors, thanks to her Grandma Bunn. She had a cute bow on to match, but of course that didn't last too long.

She had a great time, as she does every week at Kindermusik. She enjoys being around other kids...she likes to watch them, and of course she loves music and we can't forget about all the dancing :)

At the end of class the kids were given their Valentine Bags, and got to enjoy all the cute and fun
treats that were inside. It was so fun to watch her dig into her bag and see what was inside. A fun part that most of the kids were doing was checking out what was in each others bags. It was cute as each parent was like "no, no that isn't yours." Kids are so sweet and inquisitive.

Enjoy the pics below and a big Thank You to Kylie's Great Aunt Rose & Great Uncle Chuck, and Great Aunt Halina & Great Uncle Tom for making this semester of Kindermusik possible.

Sunday, February 7, 2010

Can I get a sign?

Okay, so we have tried a litle bit of sign language with know, some way for us to communicate since she is holding out on the talking right now.

Well, tonight she did the sign for more! Isn't that so great :) We sure think so, but then again we are mom and dad..lucky us!

Matt says that he thought she did it last night, but tonight we definitely saw it, repeated it, and snapped a couple pics of it.

Here is what she did a couple times. Hitting both fists together.

Then she started to get it right, but reversed the hands...almost there.

Matt got her to do it the right way a little bit later....sorry no pics of that. No matter how she does it, we know what she means and it is great that we saw the means so much more than more.

Way to go little mama! We love you so much!!

Humpty Dumpty

Yep...Kylie had a great fall last night. She was running around, being silly like her usual self and then a loud noise, followed by a brief pause and a terrible cry. My poor baby girl tripped and hit her head on the filing cabinet. We believe her head caught the handle of the filing cabinet.

I grabbed her to console her and immediately saw a huge baby goose egg poke out of her head and it was blue. I thought I was going to be sick, because I didn't know what it meant or what to do. I handed her to Matt, as I began to freak out and that just scared poor Kylie even sorry Kylie.

We grabbed her coat and ours, and thought we would just go to the ER. I mean goodness, if you saw her poor little head and not to mention the fact that we don't want to risk anything happening to her head after what we have been through the past year.

Matt called Rosemary, nurse from our ped's office that has been so sweet and caring. She came here several times through the course of the ACTH to visit with us and lend support. She was the nurse that quickly became an expert on getting Kylie's blood pressure, which had to be checked during our bi-weekly visits to the ped's office.

Anyhow, Rosemary explained that it is good that it formed a bump so fast and outside of the skin for us to see...this meaning the swelling is on the outside and not in the brain. It turning blue is because there are a lot of blood vessels in the front of the head, so the blood just pooled around that area of trauma. Oh, and that it will more than likely drain and she will have a black eye since it is above her eyebrow.

Rosemary and her husband John were so nice to let us come over so she can take a look at Kylie and give her thoughts. Kylie was great with them and started playing and doing just fine. How much we love Rosemary and John for being an extended family to us and caring they way they do about Kylie and us :) Thank you guys so much!

Here is a pick we got today...1 day after getting her back together again. It looks so much better than it did last night, and she is still so cute even with the colorful bump.

Oh yeah...I told Matt that I don't think I can do know, dealing with her falling and getting hurt. It just makes me sick and breaks my heart, and makes me worry even more. I also told him she will never learn to ride a bike, or drive, or any of that heart will just explode.

Another pic...this time with a bow. Just seconds before she yanked it off :)

Thursday, February 4, 2010


This is a Kylie original. Isn't it spectacular!! Her great-grandma celebrated her 85th birthday on Feb. 1st, so we thought it would be great for her to receive a gift with some special touches from Kylie.

We got some finger paint and put a sheet down and got Kylie dressed in some clothes that were okay to get messy. Problem is, Kylie was not interested in sticking her hands in anything, so forget getting her to then smear her hands on some paper. So what did we do? Well, as Kylie was making her rounds (running laps from one room to the next) we grabbed a hand and dunked it in the colors, and globbed them on the paper, then cleaned the hand and let her run some more laps....lather, rinse, repeat a couple more times. I know, not what we expected or intended, but we all survived and Kylie was awesome throughout!

We brought the gifts over in a box and as you can see below, Kylie enjoyed playing in the box. Her great-grandma had some measuring cups, spoons, and coasters all ready for Kylie to play with. Kylie took advantage of playing with the new toys and surrounded herself with them in her box.

Kylie having a staring contest with her great-grandma.

Kylie barely fit in the box before adding all of the odds and ends to it. She sure did have a good time though :)

Goody bag and more

Before our trip to Cleveland, Felicia and Bobbie (Matt's boss and co-worker) brought a big bag of goodies to work for us to have on our road trip. There were a couple adorable outfits for Kylie, some zip-up footed jammies, a dog named Violet that can be programmed to say Kylie's name and her favorite things, some magazines and word game books for us to enjoy as well. The sweetest thing about what was in the bag was the thought that they put into it...they picked out things that were purple for Kylie, because that is her color (the color for epilepsy).

Also, Bobbie loaned us her portable DVD player to use while on the road...and boy was that a life saver! I don't think we could have made the trip without it.

We also want to send a huge thanks to our friends Derek and Monica for stopping by before we headed out and giving us a Visa gift card to use on the trip to get things that we may need. It was so generous and helped us get more of the essentials (diapers, wipes, and milk for Kylie) along with a cute Ohio State hoodie for her to wear.

Below is a pic of Kylie playing in the bag after we took the gifts out to show her what they were.

Next, is another cell phone pic that we took at our apptmt in Cleveland. They had a little chair in the patient room that was perfect for Kylie. Even though she preferred pushing it around the room, we got her to sit in it long enough for this cute pic.

Here are a couple pics of Kylie looking so cute in her new clothes, and then one playing with Violet.

So Thank You, thank you all again for being so generous and thoughtful and helping make our trip more exciting and fun for Kylie.

Tuesday, February 2, 2010

From the heart of a mom with a SN child...

Below you will find the words and raw emotions of an amazing mom...a mom to a little guy that battled IS.

When I read her post, I couldn't help but feel such a strong connection to every word she wrote. I felt as though she was speaking for me. After reading her post, I emailed her and asked for her permission to post her thoughts and feelings on our blog. So here goes:

I hardly recognize myself anymore.

In the mirror. Or the heart.

And sometimes it makes me sad. Sometimes I'm not so sure that I'm really being Shaped. Or that I was ever cut out for this mess. Sometimes I wonder if I'd be happier had things worked out differently. If Trevy were born whole. And that I still had no idea about things like seizures and radical brain surgeries on toddlers. Sometimes I wish things were easier.

How shallow...right. I know. I've looked to my left...and have seen those with more on their plate than myself.

And yet...

I know I have SO much to be thankful for.

God, do I ever know.

For which I am often reminded both by myself...and others.

But you know what?

Sometimes I'm just not. Sometimes my emotions get the better of me.

Sometimes I'm sad. And angry. And disappointed. Faithless. Overwhelmed. Grinchy...with a side of pissy.

Great expectations lead to great disappointments

So shoot me.

That in spite of every thing I have to celebrate...

Sometimes I don't.

Sometimes I cry. And whine. And sulk. And scream. And rage. And yell at the kids. Take it out on Jonathan. And silently pity party through Christmas. And the weeks following.

Sometimes I notice the glaring gap between where he is. And where he should be. Instead of focusing on the miracle side of where he is. And where he could be.

Sometimes it's all too much. And I just want to curl up in a ball and hibernate until the Future that's far too slowly unraveling is no longer unknown. And I can wrap my heart around who he will be
Sometimes a storm just feels like a flippin' storm.

I'm allowed to sometimes feel like the sad eclipses the happy you know.

It's in the rules.

It just feels heartbreaking. And more than hard. Impossible. And like...this isn't supposed to be my life.

And yes. I know that I should be happy that we can even stand here.

And dare to look up.

Maybe tomorrow I'll be bigger.
here to get the full post, and a chance to read all the comments that were posted).

Though we haven't followed the same path with our doesn't lessen the pain and loss we feel.

You see right now, I am struggling with the fact that Kylie wasn't able to come away from this ordeal completely unscathed. We always knew kids with IS have a greater chance for cognitive impairment (fancy way to say mental retardation...I soo do not like those 2 words), developmental delay, and autism....but it's a whole other story when any of those things actually come to light.

It makes me wonder if where things are now are in addition to where we have been, or merely a result from it all. I really do believe the latest is a direct result, but wonder if that just puts her doubley at risk for all these things and more.

You see, I know how hard it can be for kids that are different to fit in and have the same opportunities as others. I have a brother that had to be in special classes for learning disabilities and I know have hard it was and still is for him. It breaks my heart to know that Kylie may have to endure all of that one day.

I think Danielle was right to say that Great expectations lead to great disappointments. That doesn't mean that I won't stop dreaming big things for her...just maybe alter how big I let them get until I can adjust to things better.


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