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.

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?

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.

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.

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!

Takin' a Dip!

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.

Toddler Troubles

The terrible twos. Yep. I believe we've entered them with a bang. Hitting? Check. Throwing toys? Check. Crying at the drop of a hat because we tell her "no?" Check. It seems like overnight our little happy girl has decided that she is in control and will do just what she pleases thank you very much! She likes to smack at our faces. We grab her hands and say "no." She looks at us, pulls her hand away and attempts to hit us even harder. Really?? What do we do then? Same thing with throwing toys. She'll fling a block at my head. I take it away, tell her "no" and what does she do next, she picks up another one and flings it at my head. Oh, and "the lip" is back. Remember this?

Yeah, she pulls that lip out for EVERYTHING now. It's so hard not to laugh though even when you are trying to discipline her. I have no idea how to handle these behaviors being a first time mom. I am not sure what is going to work or not work. I don't even know if I'll be able to follow through with it every. single. time. She's so cute and it is disarming!

Our Toddler

Dear Huntsville, Alabama...

Dear Huntsville, Alabama,

I am trying really hard to like you. It really wasn't easy leaving North Carolina for you so it would help if you tried a little. First off, why is the nearest Carter's and Oshkosh stores over 50 miles away? Don't you know I need my cute and cheep baby clothing fix? And why is there only ONE Krispy Kreme and it's nowhere near where we live? All I want right now is one of their melt-in-your mouth glazed donuts and I don't feel like driving in my non-AC working car through your 88 degree humid weather for 20 minutes to get one. Also, while we're at it, why is your customer service soooo horrible? I had a clerk roll her eyes at me because I didn't want to give her my email address. No one smiles at you or makes small talk or waves when you drive by. I may as well be up north again.

I am also sick and tired of your ants. NEVER have I ever been so disgusted with bugs. We've sprayed and caulked windows and set out traps and yet they keep coming. They found a way in through the electrical outlet. How do you beat that?? And I know we aren't the only ones having issues. Our neighbors have been fighting their ants for 10 years. They just now think they have them under control. After TEN YEARS!

I have gophers digging up my flowers.

I have people going 35 on a 55 MPH road.

I have neighborhood dogs that do not shut up.

So please Huntsville, please give me something. Like really good new friends. Or a freak frost that kills all the ants. Or a free trip to St. Lucia. I'm begging you. Just a little something.

Yours,
Maggie

Slowly Turning Around

I think our luck may finally be changing. We found out yesterday that we have a renter for our home in NC and they will be moving in on the 1st of June. I cannot tell you what a relief this is for us. It lifts a HUGE weight off of our shoulders. We have a property management group managing our home for us so if there are any issues, they will let us know. But so far, they only have good things to say about the couple who is renting and I'm hoping this year will go by without a hitch and maybe they'll stay another year. Or maybe, they will want to buy the house.

Yep, she dumps it all out and then tries to climb all over it.

This week the craziness has started regarding Rachel and her services and doctors. We met with her new pediatrician yesterday and I couldn't be happier. He seemed very on top of things and pro-active regarding some of Rachel's medical issues. He set us up with new GI, kidney, and ENT docs as well as a recommendation on a dentist for Rachel. Rachel will be seeing all of these new people in the next three weeks. Rachel and I also met with her new service coordinator and EI therapist. They actually got to meet Rachel because she wasn't quite ready to nap yet. They were impressed with her abilities so far. They said we really must be doing some good work with her. It's hard not to laugh at that. I think Rachel does most of the work. She is the motivated one when it comes to getting around. We set up a time for her EI therapist to come back and start working with her. Her coordinator will get the other therapists in touch with me to set up times to re-evaluate Rachel, see where she is at and set some new goals. I am very impressed with how organized everything is so far and I think we will be very happy with all her therapists. Tomorrow morning, I'm taking Rachel to the ARC sponsored music therapy class. I have been looking for a music class for her and I am so happy that this is available. It's free to children receiving EI therapies. We should get to meet some other members of the BUDS group (Bringing Up Down Syndrome) here in town. I'm pretty excited and I know Rachel will have a great time.

"Look at my new chair from Grandma Cooklis!"

You Know You Want To!

Take a guess at baby Flucks's stats! He is for sure a BOY and will not be born later than the due date of August 18th....and go!

Walka Walka and Step Aerobics

She gets great joy out of these walking toys. She can take up to 10 steps independently but she loves how she can walk fast using one of these.

Rachel can make it all the way up but she was interrupted by her Dada. :)

Saying Goodbye and the New Digs

On the day of the move it was just me and the movers in the house. I felt pretty lost just watching them load the truck. I left before they were done so I didn't get to see the house completely empty (or clean at all) but I did get the feeling of sadness. When it was time for me to drive away, it was really hard. I can't lie. I think I cried for about a half hour in the car and then friends called and I cried some more. I've moved a number of times in my life and I've never been sad about leaving before. Getting stuck in the tornado storms did nothing to ease my leaving either.

Since moving into our new place, I've been feeling better. It helps having us all together and having all of our things together. I do miss the woods in the backyard. Now we have a view of other people's homes. But this house is much bigger and holds us more comfortably and will continue to do so once baby boy Fluck arrives. This house is probably going to be up for us to purchase as well if we want to. It's in such a great area. Very close to stores, The Little Gym, a new pediatrician, parks and good schools. The neighborhood is nice too. Everyone has made a point to introduce themselves. I swear it's the cul-de-sac effect. You have to be close to your neighbors in a cul-de-sac because you are circled around each other. I don't have pics of the new place yet. We're still putting up pictures and curtains and Stephen has big plans for chopping down hedges in the front of the house and laying down some new mulch. The house was neglected by the former tenants who skipped town owing months of rent to our landlords. I think they are VERY happy to have us in this house now!

Rachel and the dogs have also settled in. The dogs did very quickly. It took Rachel a couple days to get used to her new room and settle down for bed without crying like she used to. I think it probably had more to do with the traveling and the lack of power for 5 days. But now she loves it and she crawls everywhere and up the stairs! I have video of that and I'll post it later. She is also thrilled with herself and her walking skills. She loves to push her walkers around and gets the biggest smile on her face when she does it. She also is building up independent steps. I want to say she is close to 10 total before she falls. She works so hard and it makes me mad sometimes that it just so much harder for her to do things than it is for other kids. I know she won't give up on walking. I just wish I could make it easier for her.

I've been in touch with the Early Intervention people here as well. I'm waiting on a phone call from them to set up a time to have them come meet Rachel and get the therapy ball rolling. I will enjoy having the therapist come over to work with her. It's as much social time for me as it is for her to work. I know she misses her old therapists. She loved them all.

The Terrifying Drive and The Aftermath

We are here. Were are all together, finally, in Huntsville. Hallelujah! I cannot say that it was easy though because like the entire 4 previous months of travel to and from Huntsville the actual move proved to be the final hurrah of horrible. It was planned that Stephen come in last Tuesday night to Greensboro to fly out Wednesday morning with Rachel. I was going to drive to Huntsville. It was going to be a glorious drive full of sunshine and alone time. Ha. I should have known better.

The cable company shut off our cable and internet and phone early so I had no real way of knowing that weather that was coming our way. If I had, I would have stayed in Greensboro another night. I took off for Huntsville around noon. I stopped for lunch on the way down. Stephen contacted me and told me his flight got diverted to Birmingham because of tornadic weather in Huntsville. I wasn't that concerned with my travels because I figured I could drive through one storm if it came up the direction I was headed. Ha, again. I stopped once again for dinner in Tennessee off of Interstate 75. When I left, the radio station I was listening too was talking about tornadoes but I wasn't sure of where I was exactly so I wasn't sure where they were talking about. I looked around the sky and it was cloudy but not dark and scary. I kept driving.

I think about 45 minutes after I left from dinner is when stuff started to happen. It was getting windy and starting to pour. I entered an area of 75 that had no exits and tall trees on either side. Then it started to hail and the trees were bending and pieces of trees were hitting the car. I thought I was going to die. I felt like I was in a movie and I expected a tornado to come across the road and pick up the semi in front of me and slam it into my car. I was freaking scared the tree pieces were going to bust open my car windows. I seriously have never been so scared in my life. Ever. Ever. Ever. And you can bet I was cursing the move to Alabama once again.

I called Stephen on the phone and blubbered about how terrified I was then pulled over at a truck rest stop. After about 10 minutes more the storm moved past and it was just windy and rainy again. I decided to keep going. I was only about an hour away at this point. As I got onto 24, I could see trees down and big metal exit signs bent in half. I guess I just missed something coming through there. I got onto 72, the last road I needed to get onto before getting to Stephen's apartment. It was getting dark at this point. The guys on the radio were talking about a thunderstorm coming through but how it should have any tornadoes. I was happy about that and kept going. Then I saw the dark, dark clouds ahead and the lightening. Wow. Almost every second there was a strike. One hit super close by and it sounded like a gun shot in my ear. Then I noticed that there weren't any street lights or lights on the side of the road where houses and stores were. I do not drive well in the rain at night, especially without street lights. The clouds opened up and it started to pour buckets. So much rain, I've never seen so much rain even when I lived in Florida. I'm surprised the car didn't float away. I just kept a tight grip on the steering wheel, praying that I was getting close. The guys on the radio then announced that the tornado index had risen and there was now a good chance for a tornado. Can you imagine??? Driving in pitch black with rain pouring down and now having to worry about a tornado YOU CANNOT SEE?

I finally got to Stephen's apartment and as I pulled in, the storm had cleared and now I could see stars in the sky. It was unbelievable. There was no power at all for miles around. Over 300,000 customers without power for over a week. Some still do not have it. We got ours back after 5 days. That was 5 days without a shower. Yuck. Stephen had to drive an hour north to get gas, food and ice to store our food in. Can you say "Welcome to your new home!"? Ugh. Saturday we moved into the house we are now renting. Sunday night our power came on at 11:30 pm. I woke up to lights on everywhere. What a glorious sight! I even took a shower that night at 2 am when I couldn't go back to sleep. Ahhhhh.

The entire time we had no real way of knowing the extent of the damage around us. They talked about it on the radio using numbers and such but without pictures, you can't wrap your mind around it. I went online after we got our internet put in on Tuesday and found some Google images from space. These are before and after shots and will let you know just how back Alabama got hit. Tornado Images

I am very, very, very fortunate that I didn't get killed and that Stephen and Rachel arrived in Huntsville ok. Please pray for the people of this state. It will be a long time before some cities and towns see "normal" again.

When Naps Attack...

Sometimes the safest thing to do is take cover on the floor.

Moving at the Speed of Light

Things have certainly picked up here. Last week, Stephen and I decided on a house in Huntsville and arranged the move. Rachel and I will be out of NC this coming Wednesday. Crazy, I tell you, crazy. The movers arrive on Tuesday to pack up our things and they will ship out on Wednesday as well. Stephen is flying in Tuesday night just so he can fly back to Huntsville the next morning with Rachel. I will be in charge of driving the Honda down. Now, before you feel sorry for me, don't. I am looking forward to the 8 hours of being alone. I love to drive and this baby isn't making me uncomfortable yet so it should be a pretty smooth ride. Except for the AC in the car. Yeah, it's really broken this time. Our friend took a look at it today and declared it done with. I'll have to take it in to a real mechanic shop once I get down there.

I will be the last person in our house. I will get to see it all empty and lonely. I tend to project feelings on to inanimate objects and it frustrates the heck out of me. A house cannot feel right? It doesn't know it's not lived in or loved? Crap. I'm going to start to cry here. I think I may be insane. We are still holding out hope for someone to come along soon to rent it. We have had three people say they want to look and then cancel last minute. We have a property management group overseeing everything when we leave so that will be very helpful. Please send up a few good thoughts that someone rents our house. We would really appreciate it!

In Rachel news, she is growing up so fast. She is finally using her pointer finger to point at things (the fan in the ceiling, the picture on the wall, a face in a book) and it's so cool! We've been working on it pretty good this past week and it's paying off. She also really wants to use a fork but the forks I have are not easy for her (or I!) to use. I will need to get some new ones because I really think she will do fantastic with a fork. She gets so proud of herself when she gets something on the tongs and into her mouth. Rachel can now climb stairs like lightening. I can't take my eyes off her when we are downstairs because before I know it she's three steps up. She is really pushing herself to walk. Wow, she wants it so badly. She's up to about 5 steps before she gets unbalanced and falls but she'll get right back up and try again. I've also seen her turn direction while standing and not holding on to anything. That is not an easy feat. She is also getting in more teeth and mostly on the left side. She has her top and bottom two, one eye tooth on the left, one molar on the left and her two bottom molars on each side are working through. I'm hoping this is the reason for her cruddy moods lately because she's been very unhappy with something.

A non-cruddy mood day....

This Easter weekend we will spend with friends and on Monday one last hurrah with the mom's of the Ds group here in town. Everyone's coming over to our house for pizza. It's very surreal to say good-bye to people. This is the first time I have people that I'm really going to miss.

Take Me Out...

to the ball game! Our friend and her son (Mr. Jonas) called us up today and invited us to go with them to our local baseball team's afternoon game. It was a beautiful day, so of course we said yes! Rachel WAS NOT thrilled with the noise at first. I was super afraid we would have to leave but she soon warmed up and not only enjoyed the sun and atmosphere but even the wind. We had fun on the grass and playing with shadows. I didn't watch any of the game but it was fun hanging with my girl and my friend. Not too many days left like that for us here in Greensboro. We need to let them sink in while we can.

Enjoying the view

darn, pesky wind!

Taking Steps

Today, Rachel took 5 steps towards me before falling in to my arms. Our girl was a little stiff-legged but she tried her hardest and did it. You could just see the concentration in her face and the deliberateness in her movements. She wants to walk so badly and she doesn't just give up. Rachel will stop a foot away from where ever she wants to go and take steps on purpose. She could just crawl to where she needs to go but she stands up and walks. I love that girl and her determination. She is going to conquer this world.

Living in the Land of Nothing

Since January 1st, Stephen has been living in Huntsville without us. Or, we've been living in NC without him. Either way you say it, it sucks. This move to Huntsville has been long and full of road blocks. We've been having issues with our house in NC. It's not selling. In the beginning of March we decided to try and lease it. So far, we've had no luck with that. This weekend Rachel and I traveled to Huntsville to visit Stephen and to look for a place to live. Out of the 5 houses we chose to look at, 3 of them had rented before we even had a chance to see them. The only house we liked that we saw ended up having not only an offer put in on it, but a person was interested in leasing it too. We hit a dead end. It's now up to Stephen to find a new place and it needs to be done quickly. The apartment he is currently in is being paid for by his new place of work. The lease ends the end of April. We are getting down to the wire and I'm tired of waiting. I'm in the middle of nothing. I need to find all these new doctors and friends and things to do but I can't. I have all these doctors and friends and things to do in NC but I feel like I already am living with one foot out the door. This new baby makes things all the more urgent. I want to be settled someplace with a nursery ready. I hate living in limbo.

***a happier post will be coming later, I promise.