Saturday, May 31, 2008

She Drank IT!!!!!!!

I know what you're thinking, that's a strange title for a post. Soon you'll understand. Caitlyn hasn't been a huge milk drinker since she was 18 months old and we quit giving her bottles. (This was before we knew anything about Rett Syndrome. Had we known that 2 years later she would have lost her chubby cheeks and be just barely sitting at the line between underweight and ok I never would have taken those milk bottles away!) Anyway, so occasionally she'll take a few sips of milk, but mostly she just spits it out. I ready this funny cute little story on Brooklyn's blog the other day that got me thinking. We had at one point tried strawberry syrup, but it didn't make a huge difference. (that and with all the sinus issues and vomiting she was having, we had pink stains all over our carpet!) So last night while I was shopping I remembered Brooklyn's mommy saying she really liked her strawberry nestle quick. (4 scoops...the only way to go) So we tried it with lunch today. I was a little more conservative than Brooklyn's daddy...Caitlyn only got 3 scoops in about 5 ounces of milk. She drank the whole think without spitting it out!!!!! I had a feeling it would go over, because she likes the strawberry pediasure, but strawberry milk smells so much better! We are hoping we have a milk drinker back on our hands!!!!

On the thought of meals...We found Jimmy Dean breakfast bowls...They have sausage (or bacon), potato, egg and cheese in them. Full of yummy fat and protein and Caitlyn loved it! I'm all for quick and easy breakfast on school days!

My camera is having technical difficulties, so I'm not sure when I'll be able to get a new picture up. I think I might try and talk my wonderful husband into letting me buy one for my birthday..So be on the look out for cute pictures. And if you really need a cute kid picture fix, you can always head over to Brooklyn's blog...Her mom is great with the picture taking!

Friday, May 30, 2008

Thoughts to Ponder-a post on mobility and other Rett things

This got to be a little depressing and kind of a pity post...Now I'll have to take a super cute picture to make up for it...

Isn't it funny how no matter how you have it, it somehow looks better on the other side? I talk to my friends who have children with Autism about how their kids always run off. They stress about it and such. I say just once I'd like it if Caitlyn would walk to the front door on her own instead of having to hold my hand. Caitlyn is very very nervous and cautious with her walking outside. She panics if we step off of the sidewalk and onto the grass, and she wont take more than a couple of steps without hold someones hand. I am a mean mom somedays. I make her step over the threshold to go in or out on her own. We have stood for near 10 minutes at times waiting for her to take that step. Mind you this is like a 1 inch step. Sometimes she will get silly when she walks, and just stop and twist which then makes it look like I'm dragging her! We were outside today and she got stuck on a hill. She almost made it to the top, then she just stopped and sat down looking at me like "mommy, why didn't you help me?" It was the most pitiful look. There are days like today when I wish she was more independent with her walking. She leaked last night while she was sleeping, so we had to wash her blanket. Well it doesn't fit in our small 1/2 size washer so we took it down to the laundry room and payed the outrageous fee of $2.25 to wash it. Well, walking down there was a trick. It's always a trick when I have things to carry. She did think it was really funny to go out the front door and head the wrong way as fast as she could (which luckily isn't that fast) giggling while she went.

I think as a parent of a child with any sort of disability it is important to try and see the brighter side...

  • I will never have to worry about her running to the street

  • We can be around a pool and even though she has the fearless love of water, she wont go in alone because she wont step down off of ANYTHING (lakes and oceans are another story)

  • She stands right by the car while I unlock it (standing in fear of her surroundings, but standing still)

  • I can go to the laundry room with her, and do my think with the clothes, and not worry about her running into the parking lot...again there is a step

  • She loves to hold my hand and will reach for it...I'll never have to worry about her pulling away from mommy

  • She loves sitting in her stroller(to the point that she almost nose dived off of Santa's lap this past Christmas because she wanted to get back in!)

  • She makes me take my time-She doesn't walk very fast, and every time she holds her breath she has to stop going places takes awhile. And then she is such a people person that she stops and looks at everyone who passes!

I used to take for granted my ability to get where I wanted to go. I never even considered how I got that way, or what it might be like otherwise. I was always in a hurry, and never really noticed my surroundings. Caitlyn has made me appreciate mobility. I see the fear on her face when we walk down a hill, or when we walk onto the grass. She is literally terrified that she may fall. I hate seeing her go through that, because at home she is so comfortable and shows no fear. I never complain about the mobility that she does have. I don't complain for the same reason that parents of children who talk shouldn't complain about the things they say. Or the same reason that parents shouldn't complain about having options for their child. I don't complain because I know first hand that their are parents out there who are thinking or might even say "at least she walks."

Chicago was hard in a lot of ways. Ever since Caitlyn was diagnosed with Rett Syndrome, I have struggled with being around other families. The first time we met another family, we drove to their house for dinner. I left feeling like I didn't fit into this community her diagnosis had put me in. I hate that she has this Rett Syndrome monster, and sometimes I feel guilty that she has the abilities that she does, even though they are limited. I hate that two girls with the same diagnosis can have it so different. I struggle to find where we fit into the community. (of course I'm in tears as I write this) I'll never forget our transition meeting when Caitlyn was aging out of birth-3. The nurse said to us "I've seen girls with Rett Syndrome, are you sure this is what she has?" This was the same lady who said to us and the staff when the year started. "It's not a matter of if the seizures get worse, it's a matter of when. They will get stronger and they will get worse and eventually the medication wont work." These are things I'll never forget. I'm proud of Caitlyn for the things she does. I know she's worked very hard to be where she is. She's come along way from the 2 1/2 yr old that the doctors said would pretty much be 2 1/2 mentally forever. She continued to gain skill even after she came out of her regression. Being handed a diagnosis is scary and it leaves you feeling even more lost. You feel like you're doing it all alone. And when your child has a condition like Rett Syndrome with such a vast difference of how it effects people you still feel all alone. Caitlyn's Rett Syndrome has made it so I've made connections that I wouldn't have made otherwise. In Chicago I met people in person that I felt like I knew everything about. I know they have Rett Syndrome in their life, but even though we share that common diagnosis our girls are all sooo different.

On a happy ending, even though our girls are so very different, they all have one thing common. Each and every girl with Retty Syndrome that you will ever see have the most amazing eyes. Let's go back in time now and look at this picture. This is from September of 2006...I think more than any other picture this shows the beauty of Rett Syndrome. The Eyes of an Angel

The Eyes of an Angel

From the Angel's mouth,

No words are heard.

Yet all those around her

Know just what she says.

From the Angel's eyes,

We hear her story.

Through her eyes we learn

Her every want and desire.

Look into the Angel's eyes,

And a story you will be told...

A wordless story full of joy...

The story of a Rett Angel.

Wednesday, May 28, 2008

Kindergarten Update

I know everyone is probably waiting for an update from the conference, but Kindergarten is on my mind so that is going to be first. (I'm sure this will have reference to the conference)

Earlier in the year when we discussed kindergarten with Caitlyn's preschool teacher, he gave us our three options (dk, self contained, or general ed with an aide) and we chose general ed with an aide. He said he would support us in what ever decisions we made. Fast forward to May 20th. (IEP day) He makes no reference in the IEP to this placement decision, and he left the meeting before we were done! (why do they schedule them so close together?) Luckly the placement that is in there is for the current year. It was overall a very stressful meeting. He told us that he couldn't give Caitlyn credit for the things [we know she knows] because she isn't consistant. (A friend of mine said that is the most consistant thing about our girls..that they're not consistant!) So I left that meeting feeling pretty down about everything. The conference really helped me realize that even though her teachers may say things like this, she really is learning. She really really is!!!

Jump back a couple weeks before this, and let me tell you about our brief [unofficial] meeting we had with the school psychologist at the new school. I told her what we wanted to see happen, and she said that an aide in the classroom made the environment no longer the least restrictive. We told her that we wanted Caitlyn at our home school and she said (with a bit of attitude) that she wouldn't necessarily go there, it depended on where the program was she needed. I told her we wanted her in general ed. She then went into this big schpeel trying to 'sell' the idea of self contained to us, because that's not what they call it. It's academic support and the kids spend their non-academic times in the general ed classroom. I walked out of that meeting reminding myself that academics can be adapted within the general classroom. I know we will have a fight on our hands, and this is just the beginning. I'm sure by the time September comes around that psychologist wont want to see me...ever...

So that brings us to today. I think that the conference really gave me the strength to make this fight. My daughter deserves an education equal to that of any other child in the district. So today I called the psychologist and told her we needed to meet to discuss the placement. and my exact words were "It is our intention that she will be educated at her home school in a general ed classroom as the least restrictive environment per IDEA." I'm sure she'll be super eager to call me back....

I will continue to update when something new happens...But for now that's everything on the education front...

Something exciting I learned at the conference is that my daughter is all there. I have a new found energy to communicate with her. She picks her shirts in the morning (from 2-3 pre-approved by mommy), what flavor oatmeal she wants, what she wants with the oatmeal and what kind of sandwhich I should make for her lunch. She seems to have such joy from making these choices...momma and daddy are finally starting to figure her out, and she loves it!

Monday, May 26, 2008

Chicago was wonderful

I had a wonderful weekend and it was so neat to meet so many different families! I'm so happy I got to meet all of the wonderful mom's who's blogs I read. (I will update my list of Rett girls soon, I promise!) The weekend was full of information, but I'm not quite done processing it all...So until this tired momma gets it all processed in her head, I'm going to leave you with a picture that my wonderful husband sent me while I was in Chicago. This is now my favorite picture of Caitlyn. She is such an angel, and apparently she wouldn't sleep last night because daddy told her they were going to pick mommy up the next day! It gives a momma a sense of pleasure to know their daughters truly show they missed them, or show excitement to see them. (You rett momma's know what I mean...They are very aware)

Friday, May 23, 2008

Chicago is here!!!!!

I leave for the airport in about 20 minutes!!!!

Sunday, May 18, 2008

This is HUGE!!!!!

I decided this time the Chicago Count Down needed a new post.


I should find out what the weather will be like so I can pack!

Saturday, May 10, 2008

Chicago Countdown!!! (We're in Single digits now!!!)

To all those other moms and dads(and grandma's) that I'm so excited to meet in Chicago.......

7 DAYS (not counting current day) or


Friday, May 02, 2008

A common bond

I saw this on another blog...We are bonded together no matter what the special needs are our child may have.

To You, My Sisters (and Brothers!)
by Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.We have our own personal copies of Emily Peri Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Our Rett Syndrome Clinic visit

Here is the overview of our appointment...I have to add that I bought Caitlyn 4 of these talking picture frames to use as simple communicators throughout the house. If you are interested, here are the instructions on how to adapt them into communicators.

There is an amazing doctor at Legacy Emmanuel Children's hospital that is very familiar with Rett Syndrome. We went down this week to see her, a speech therapist and a physical therapist. They all said she looks great.
Speech therapist report: Caitlyn seems very eager to communicate. She had the opportunity to try out a computer that had a touch screen on it. There were two different colored boxes on the screen and one had a sunshine hiding behind it (you could see a little bit of it). Eric asked Caitlyn to touch the sunshine. She touched the box it was behind. the sunshine rose and then set behind the other box. Again Eric asked her to find the sunshine. and she did again!!! She used a little mac switch to ask for more crackers. It is just amazing! The therapist said she sat in front of that computer and used it like she had always used it! Then we were able to try out a TANGO communicator but Caitlyn was too tired to do anything with it. But I sure liked it! Here are a couple of links to it. This link has some videos. If you scroll down to the bottom, there is actually a video of a girl with Rett Syndrome using it. this link tells more about it. The therapist is going to talk to a vendor so that when we go back in October, we can have more things to try.

Physical Therapist report: She is doing great! We need to make her wear her braces more often. They said her heels can get tighter, so we have to be proactive with it all. We also need to find a therapist outside of school that will follow her and check her spine (she is at high risk for scoliosis) and hips.

Medically Speaking: They agree that it seems as though Caitlyn's repeated sinus infections is in fact Reflux. During the night it seems that she was refluxing into her sinus cavity and causing infections. So she will remain on Prevacid for now. She weighed 37lbs and was nearly 43 1/2 inches tall! We are in the process of evaluating if we want to try a low dose ADHD medication for school. We will talk more about that with her normal ped.

I think that is about it. Overall it was a great appointment! Well worth driving 200 miles and staying in a hotel! It is nice to have doctors who know what Rett Syndrome is before we even get there! I hate educating doctors...I don't feel it is my job!

Chicago Countdown: 21 days until takeoff!!