June 29, 2011

33 Weeks, No Tubes and Mom's Night Out!

Yep, here I am in all my 33 week pregnant self glory. I don't look like this every day. In fact, most days I'm in Pj's and a tank top (which you'll see in the other pics). But tonight was my first Mom's Night Out with the local Down syndrome group ladies. I got to pick the destination....Mexican food it was! There were 6 of us who met up and it was a good time. I got a good peek into what lies ahead for Rachel here in Huntsville. I am happy that I have another year to take it in before she starts. Some of the stories I've heard make me wonder if I'll make it through her schooling without killing a teacher or vandalizing a school. Let's hope it doesn't come to that!

Rachel's ENT appointment on Tuesday went fantastic! All the fluid is out of her ears and she passed the air pressure test. No tubes! We go back to the ENT in 6 months for a follow up unless we have a reason to bring her in earlier. Let's hope not. Tomorrow Rachel gets blood drawn for her kidney doc appointment next week. Please, please, send good thoughts that they won't have to stick her more than once. And that is all the news I have....and now just some cute pics!

June 27, 2011

GI stuff, ENT stuff, Girly Weekend Stuff!

Reflux is still an issue in our Rachel's life. I've tried repeatedly to reduce the amount of Prevacid she is taking to no avail. Her new GI suggested an endoscopy to see if there is any damage being done and to take samples to biopsy. The endoscopy showed now damage being done to her throat but the biopsy did show signs of irritation. He wanted to up her meds even more. Um, no thanks. She is fine where she is at and the point of the endoscopy was to see if I could reduce her meds. Seriously the girl doesn't need to take Prevacid three times a day. So we are stuck where we are at. We have a follow up with the GI in July. I'm sure we'll talk about other options then. I just wish Rachel's insides would "tone up" so she wouldn't have to be on so much medication and we could get rid of her liquid thickener. Plus, giving her 4 ounces of milk 5 times a day so she doesn't spit up all over the place is really inconvienient for traveling out of the house.

Tomorrow is her follow up with her ENT. He will be looking for fluid in her ears. I have a feeling it's still going to be there. She's been teething like crazy trying to get that last 1st molar in on the right and it's keeping her stuffy. I will probably be back on here posting about her getting tubes put in. Stay tuned!

Rachel was supposed to see her kidney doc last week but I had to postpone it. At the endoscopy they had to stick her 5 times with a needle to get an IV in to give her the sedative for the procedure. The kidney doc needs blood. There wasn't anyway I was going to subject Rachel to more sticks right after that nightmarish happening. So it's been moved to next week. Wish Rachel luck with this check up. I would love to see that her kidney is growing again and that all her blood work is normal. Again, kidney issues are not something that we need to mess with right now or at any time.

On a lighter note, I took a trip down to Atlanta for a much needed ME weekend. Since Rachel has been born, I have never had any real time away. I knew I needed a break before this new baby comes so I contacted my friend, Lori, down in the ATL. I know Lori through a friend of mine who I've know since Kindergarten. They went to college together. I actually hung out with Lori once while we were in college but that was it until I had Rachel. Come to fine out through my friend that Lori has a little girl, Natalie, with Down syndrome too. Since then, we've been in touch pretty regularly through email and facebook. I also got to meet a fellow blogger, Debbie. Debbie moved to Atlanta and her daughter, Addison, is in school with Lori's daughter. I saw Addison in one of Lori's pictures and my jaw dropped. I couldn't believe that this person, this blog I was following, actually knew someone I knew! After that I knew we all had to get together.
We arranged a full day of pedicures, manicures, lunch, shopping, massages, laying by the pool, dinner and a good nights sleep in a hotel! A dream come true and we had a really good time. I wish I would have taken some pictures but I didn't feel like being a tourist. I just wanted to relax. Lori took a couple pics with her cell. I'll include one from dinner. We went to Trader Vic's. Um, it was in the basement of the Hilton and it was the creepiest dinner ever. We probably should have left but it was just so weird that we had to stay.
Um, Peanut Butter...and it was gross.

June 21, 2011

Rachel's New Trick

Rachel's PT was here only a little more than a week ago. She had asked if Rachel was able to get up onto the toy chest bench she has. I kind of laughed and said, "No, it's too tall." HA! Guess who was listening?

June 19, 2011

Happy Father's Day!

Thank you to my dad for all that you've done for me and for being such a good Grandpa!

And thank you to my husband for truly being the best Dada to our girl, Rachel. She knows she is loved and I love you.

June 15, 2011

Quick Glances

About a month ago, a friend of a friend shared a link with me for a show called "The Specials." It's a documentary of a group of special needs adults living together and it provides insight in to their day to day lives. While I was put-off by the title of the show, I watched a couple episodes. That was about all I could do. There is something about seeing an adult with Down syndrome that is hard for me to stomach and it's probably because Rachel will be one someday. The future is very hard for me to look at in the face. I tend to keep my eyes low and only focus on the here and now of our daughter's life.
When you learn your child isn't "perfect", you automatically jump into the future head first. You all of a sudden think about the things your child won't do. Things they won't experience. As time goes on though, and you settle into loving that little being in your arms, the future doesn't look so scary. You are lost in the moment and I think most of the time, you stay in the moment. Families of children with special needs have a lot to keep them in the present moment too - doctors appointments, therapy appointments, and medical procedures overtake a big chunk of your life. Again, you don't find it overwhelming, it's just how your life is and you live it. But every once in a while you look up and there is the future and it's scary. How will I deal when I get there? How will I handle X, Y and Z??

I had a conversation with my friend two days ago. Her son has Down syndrome, too. She went to the Down syndrome conference in Florida last year. She told me how there was a big dance and she saw adults and children with Down syndrome dancing without a care in the world. My friend said she spent half the time laughing and the other half crying. Even after four years of welcoming her son into this world and loving him, the future is still hard for her to look at.

I guess what I'm trying to say is this...I love my Rachel and I would never change who she is. I would never wish she wasn't born. But sometimes, it's hard to believe this is my life. It's hard to believe that my girl is different and that those differences will only become more apparent as she gets older. It's hard to imagine her as an adult of 21 but acting like she is only 12. It's very hard knowing many people will reject her and think less of her because of her disability. I think a lot of special needs parents feel this way too which is why we don't look at the future too much. It's too painful and it's easier to deal with when we actually get there.

June 11, 2011

Today Went Swimmingly

A good day in Huntsville was had by all.
At Alli's birthday party

 Rachel went to her first swim lesson today. It was a "try out" class to make sure she would like it before we really signed her up. The lessons are on Saturday mornings, last for 10 weeks and are going to be "father and daughter" time for her and Stephen. Stephen said the class went great and that Rachel really loved it. She even got dunked under water! I will go to at least one of the classes to get some pictures because I really need to see my girl in action and I know you want to see her too!
Rachel's new swimsuit from Grandma Fluck
We also went to a birthday party for Rachel's new friend, Alli. Alli turned two! Her family had a pool party, hot dogs and cake. Rachel had a ton of fun in the pool and her and Alli really do get along well. It's so nice to see. I hope they grow up and become really good friends.
"That looks yummy!"

"let me help you with that"
Happy 2nd Birthday, Alli!

June 3, 2011

We've Been Busy!

It's been a while since my last post. We've been busy here! My dad came down for a week long visit. Rachel was so excited! So much so that she couldn't calm down to sleep and ended up crying her little head off a couple nights in a row. Grandpa left today and guess what? She went down for a great nap and bedtime without a peep. I guess being with boring old mom all day will do that to a person. :)
Playing in her big girl chair
Rachel went to the dentist for the first time. What a great experience it was! Everyone there was great and her check up was brief. I was surprised that Rachel actually laid back on the exam chair and didn't put up a fight when the doctor was checking out her teeth. He commented on how sharp her front bottom teeth were and put it out there that leveling them down was possible in the future. Not sure how I feel about that. I guess we'll see in 6 months when she has her next check up.

We met up with her ENT who checked Rachel's throat and said her tonsils were not large at all. He said that between a 0 and 4 her's are a 2. Which is really good. He also looked in her ears and said that there wasn't any fluid and set up a hearing test for the following week. We go for the test and she did ok with the hearing part but flunked the air pressure test thing. We saw the doctor right after that appointment and sure enough, she had fluid in her ears. Amazing how that happens in a week, no? Soooo, she is now on antibiotics to try and knock out whatever could be causing the fluid build up and she will be seen again in three weeks to check the fluid. If she still has it, then we'll probably need to go ahead and have her get tubes. Rachel's biggest weakness is her speech, or lack thereof, so I want to make sure we are doing everything possible to help her overcome that. Being able to hear clearly is on top of that list.

Speaking of speech, Rachel's new speech therapist came to the house last week. I LOVE her. She is tough. She makes Rachel work, work, work with signs. I was so impressed. Poor Rachel was worn out after she left but I know this woman is going to do great things for her. I can't wait until her next session!
She tried to take her shirt off....almost did it!
 Rachel is in the big girl walkers club. She walks everywhere now and loves it. It is still the strangest thing to see her upright and looking so much older. She has had to have grown at least an inch in the last three weeks too. All of a sudden she's able to reach the ground with her feet on her riding toy and all her clothes are tighter, her pants fitting just right. I never thought that girl would grow again after being in a stand still for about six months! 

Flying Air Dada
In new baby news, I will be 29 weeks, 3 days on Sunday. That is when I was checked in to the hospital in labor with Rachel. This pregnancy has been night and day in comparison with my pregnancy with Rachel. Everything has gone so smoothly. It's just unbelievable and I am so thankful. The little booger is a mover too. Wow, he moves my stomach every which direction and I can feel his head (?), butt (?), foot (?) poking out. It's strange to be able to feel that little hard part of a body inside your own stomach or to see it move across like a wave under your skin. I find myself wondering what he is going to look like more and more. Only about 10 weeks, give or take, to go. Time is moving so fast these days.