Thursday, February 25, 2010

What!?!?!?

Allison and Leah had their book fair this week, and as usual, they came home with something other than a book. It seems the "must have" item at the book fair this year is an erasure shaped like a miniature cell phone. They both came home with one yesterday and proceeded to spend the afternoon and evening having conversations with each other on the erasures. They each picked a ring tone and when one calls the other, they will sing out the ring tone of the one they are calling. Apparently, that is how one knows that their erasure is ringing! At bedtime last night, I went into Allison's room and she was quietly studying the erasure. I told her it was time to go to bed and then I turned out the light. She said, "Wait, don't turn out the light yet, I was texting!" I told her since it was an imaginary phone, she should just imagine that she is texting the right letters!! Funny how much fun a kid can have with a $1 erasure. It really makes me hate that I have spent so much money on all the electronic games!

Wednesday, February 24, 2010

Has It Been A Week Already!?

Where does the time go? When I last blogged, I had two sick girls. Leah's test results came back on Friday, and she did indeed test positive for strep. Good thing I took her in quickly and got her going on antibiotics. I usually will wait a couple of days to see if they get better, but since we knew we had been exposed to strep, we got her and Allison started on antibiotics quickly and they recovered pretty quickly too. Finally, on Friday of last week I had all three girls back in school for a change. Rachel has remained healthy, thank goodness. She started having a runny nose Saturday morning, and I decided to keep her home from gymnastics so as not to share our strep with anyone, but later in the day she was fine. I felt so bad, because Rachel really wanted to go to gymnastics and I apparently kept her home for no reason.

Rachel went in to see the endocrinologist on Monday. She goes in every six months for a check up. She has gained a little over a pound and has grown about an inch and a half since August! She weighs in at 31.5 pounds and measures 41 inches tall. Not very big for a six year old, but she is growing. The doctor said her lab work looked great, so we won't have to see him again until August. Rachel will be going in to see the ophthalmologist next month and I need to get her an appointment with an orthopedist soon, because she is outgrowing the inserts she wears in her shoes. Speaking of shoes, she got a new pair this week and has been having to get used to wearing bigger ones. She stumbles a lot, but the teacher says she has not fallen down. Guess she is getting better with her balance than she used to be, because new shoes used to guarantee a skinned knee. Sometimes she is looking so grown up these days!!!

And speaking of grown up..........we got a flyer in our mailbox the other day from a girl in the neighborhood who wants to babysit. I thought, "Great, nice to know somebody is willing to watch the kids!" As I read further down I noticed that the little girl is about the same age as Allison. When did I get a daughter that is almost old enough to babysit? I became giddy with the thought that not too long from now, I will have a built in babysitter!!!! Mike and I were talking with Allison and telling her she could start baby sitting in about another year, and she was so excited. She made it known that she wanted 25 cents an hour. I told her she had a DEAL! I wonder how long I can get away with that rate?

Wednesday, February 17, 2010

Two Down.......

We had a busy weekend. Allison had her best friend over on Friday night. Her friend moved to Wisconsin a little over a year ago, and was in Florida visiting family, so needless to say, Allison was very excited to get a chance to visit with her. Saturday I took all the big girls to a place called Funtown. It has a roller skating rink, an arcade and laser tag. The girls had a great time running around there for a couple of hours. Rachel stayed home with Daddy since she cannot skate, and I was glad she did, because it was really loud in there and she would not have liked that.

Sunday Mike packed up and went to Grandpa's and the girls and I packed up and went to my sister's. My sister's youngest turned seven on Valentine's Day, so we went over for a little family party. The girls went bowling and had a blast. It turns out Rachel likes to bowl. It is so funny to see her try to pick up a six pound ball. You would think it weighed a ton! I have to help her carry it and then try to "roll" (more like throw) it, but she has a great time. At one point, I thought I would just bowl one frame for her because she had just gotten some french fries and was busy eating. I rolled one bowl and turned around to see her standing behind me ready to take her turn!

Since the girls had Monday off for President's day, we spent the night with my sister and stayed at her house until after lunch on Monday. The girls love hanging out with their cousins! Leah complained of a sore throat Monday evening and ended up staying home from school on Tuesday. Allison came home from school Tuesday afternoon complaining of a sore throat and headache. By evening they were both running fevers. My sister called me during the afternoon and told me that one of her girls was just diagnosed with strep, so I got Leah in to the doctor and got antibiotics for her and Allison. Both Allison and Leah have stayed home from school today, but the antibiotics seem to be doing the trick, and they seem to be feeling much better today. So far, Rachel is fine. I hope she stays that way. That reminds me........I need to get her in for blood work this week because she has to go in for a check up with endocrinology on Monday!! Yikes, I had almost forgotten about that! I guess I will try to do that when she gets home from school.
This is how Leah and Allison have spent their day. I guess I better get them going on home work soon! That is going to be fun........I am sure I will be hearing about how bad they still feel!

Friday, February 12, 2010

ABCs

video

Rachel has really done well this year learning her letters. This video was done last night as she practiced her letters at bed time. She is usually a little better naming her letters than she did in this video, but she doesn't do half bad.

Wednesday, February 10, 2010

The Wonderful World Of Down Syndrome

I love to read the blogs of other moms out there who are navigating the world of Down syndrome like me. Some of the blogs are funny. I believe that God gives all mothers of children with special needs a certain sense of humor. Some of the blogs are sad as mothers struggle to understand the "why me" of down syndrome, heart defects, childhood cancer, or the death of a child. Some blogs are inspirational as they tell the tale of adoptions of children with Down syndrome from European orphanages-what amazing stories they tell. Some blogs are informative as the mothers help spread information about something that they have tried that worked for their child. Others are, like mine, a ramble of daily life intended to keep distant family and friends connected. I created this blog just for that....keeping family connected. I had hoped it would help us stay connected with the grandparents, but it turns out that it is just too complicated for them to figure out. Ironically, the people I am keeping updated are people I do not know personally, but am connected to through our experiences with the world of motherhood and Down syndrome. I have recently debated about whether I wanted to continue posting, since this was not my original goal.

That is until I came across a couple of blogs recently that really touched me. They are about new mothers accepting a Down syndrome diagnosis, prenatally and at birth. I read their words, felt their pain, and really thought about what it means to have a child with Down syndrome..... I remember the day we found out Rachel would have Down syndrome. Rachel was diagnosed prenatally, and we received the results on Mike's birthday. I remember feeling that my world was crashing down around me. I sobbed that our family would never be the same and that we would never be able to do anything as a family again. I feared that having Rachel in our lives would be a detriment to the older girls. I felt that no one in the world had ever gone through the emotions that I was going through, that my circumstances were unique.

I was over the shock of the diagnosis by the time the pregnancy was coming to an end, but I dreaded the day Rachel would be born and my "perfect" little family would become the "Down syndrome family." The day she was born, I remember holding her in my arms and thinking, "Now what?!" Every time I looked at her I saw Down syndrome and not her. I was reading lots of books about Down syndrome and what to expect, and the most memorable thing I read was that they are babies first. Babies first!! So obvious and yet still a revelation! Over the next few weeks, as I got to know Rachel, I began to realize that she was not this terrible package of problems, like many sources would have you believe, but she was a beautiful little girl. She was indeed just a baby. I was surprised at how, despite the Down syndrome, I felt she was perfect. The flat nose, the small low set ears, the Simian crease in the palm of her hands told my brain that she had Down syndrome, but my heart told me she was a perfect little girl.

The years have just zoomed by and Rachel has accomplished many things. She signed her first word at 10 months, sat unassisted at 10 months, finally perfected the crawling technique after months of crawling on her belly and elbows. She learned to scoot around the house on her bottom when she wanted to carry something to another room, but could not walk yet. She started preschool when she turned 3, learned to walk shortly afterwards, and learned to go to the potty at 4 years. I remember how excited I was when she figured out how to sit up on her own!! I don't remember that about the other two girls, but it was so exciting when Rachel did it. With each accomplishment I have cheered her on with such excitement and marvelled at how wrong I was in thinking our lives were doomed because of her. She is an amazing little girl and she has changed my perception of people with special needs. We are not the "Down syndrome family" I had feared we would be. Life goes on and it is good.

I am in total agreement with all the moms that I encounter in the blogging world that this is not the journey I expected when Rachel was first diagnosed. We, as a family, do smile again and we do get to do a lot of things that I first thought we wouldn't, but there are things that could be different for us if Rachel did not have Down syndrome. Rachel is six years old and needs to be bathed, taken to the potty, assisted with dressing, have her teeth brushed, watched with vigilance to keep her from wandering out of the house. She does not speak except in hard to understand, single word requests. Bless her heart, she tries, but I just cannot understand a lot of what she says. She is still very dependent on me for most things at a time when the other girls were starting to become more independent.

I do not want anyone feeling sorry for me, I just want to say that having a child with Down syndrome is hard at times. It is certainly not the death sentence that I thought it would be in the beginning, but having a 6 year old that functions like a 2-3 year old gets very tiring! Because of this, I have decided that I need to remain in the blogging world, because I need the other mom's out there! I need to laugh with them and cry with them and have them tell me that they go through some of the same things I am going through. That it is okay. As I read the posts from the new moms, I realize that even though I felt so alone with my thoughts and emotions at the time of Rachel's diagnosis, I was not. There were lots of other moms out there going through the same thing. If only I had been blogging then! As I read these blogs I am realizing that I am not alone today either. It is great to have these friends out there in the cyber world.

You know, my family is a Down syndrome family, and it is not so bad. Yes, Rachel is still very dependent on me for lots of things, but she is learning something new every day (well at least every few months ;-) ) There is nothing better in this world than a hug from her. Someone talked about how wonderful a child with Ds can hug and suggested it was because of their low tone, that they felt so great to hug. Whatever the reason, she is a great hugger! She has a smile that can light up a room. She is the one that shows me that my two older girls do indeed have compassion for someone other than themselves.

The people I am connected to through this blog all know how special these kids are-some are just beginning to realize it and others are well into their journey, but they know. Some of them also know that it can also be hard, sometimes, to have to continue to be there for a child that takes longer to become less dependent or to see a child younger than yours do so much more than yours. The moms in the blogging world know where I am coming from, and as one mom said, I can blend in here! These moms are some of the neatest and most interesting people I have met. I look forward to seeing what they are up to and what accomplishments their kids are making. I appreciate the knowledge they share and the experiences they pass on, and I love being a part of their blogging world. I love being a part of the Down syndrome world. It is indeed a wonderful place to be.

Monday, February 8, 2010

Not Like The Old Days

These days, so many neighborhoods here in Florida are relatively new. This means there are no old trees to climb. This has not slowed down my girls! Good thing they are small for their age!


Sunday, February 7, 2010

T-R-O-U-B-L-E

Someone in my house has decided to take matters into her own hands. In the last 24 hours Rachel has twice demonstrated her ability to get things for herself! I love to see her new found independence........but..........I think I am going to have to draw the line!


My Own Money

Leah and Allison have been working really hard lately to earn allowance. A week ago Friday, they came running into the house to ask for money to buy something from the ice cream truck. I told them if they wanted to buy something, they needed to use their own money. Leah was okay with this and quickly grabbed her money and headed out the door. Allison had to try to negotiate because she is trying to raise money for a rabbit and did not want to spend her "bunny money" on ice cream. After about ten minutes of negotiations, she decided she would just not buy anything. As soon as the ice cream truck came into the neighborhood, she came flying into the house to get her money, saying she just couldn't say no! Later that evening she blamed me for making her spend her money!! I don't remember what Allison bought, but get a load of the Popsicle Leah got. I had to laugh when she pulled it out of its wrapper.


Saturday, February 6, 2010

My Six Year Old Teenager

One day this week, I went into Rachel's room to see if she was ready to come eat breakfast. She was sitting in her floor listening to her CD player and reading a book. I sat down to look at her book with her, when she proceeded to point and tell me "Door!" I then asked her did she want me to leave and she said, "Yes." Not only did she want me out of her room, but she wanted me to close the door behind me. When did she turn into a teenager?