6 Month Photos!

I took a trip to Durham last weekend to meet up with some friends and to have Rachel's six month photos taken. My friend, Lori, who is a wonderful photographer along with being a mom to two cute little girls (one with Ds like Rachel), was kind enough to take some photos for us. Here are a few favorites! If you like what you see, you can find Lori in and around Atlanta, Georgia.Check out her website!

All Things Rachel

Ever since Rachel came home, she has been battling reflux. She was put on one medication, then switched to Prevacid, then switched to Enfamil AR (added rice) formula, then her Prevacid was upped to the adult dose twice a day and now she has another medicine added to the mix. Her GI doctor said that if this medication didn't work, we would have to start doing some tests on Rachel. She has a follow-up with him in two weeks. She is just so miserable. She can't do any tummy time or else she just whines and cries the rest of the day. No fun for her, no fun for us! I just want her to be able to play on the ground like a "normal" child so whatever tests are needed to get to that point, we'll grin and bear them.

She has also been extra crabby because of what looks like a tooth coming in. Now, I have no idea what a tooth looks like when it is coming in but I have had two people who have had babies take a look at the "tooth" and they seem to think it is. We will know for sure on Monday when we visit her Pediatrician for her 6 month check up. Want to place your bet? Vote in the poll to the left!

She is now 23 inches and 12 pounds, 5 ounces! Yay! She is a big girl and I think she gets that all from her daddy. That is a good thing! It's funny because the Nurse at the GI doc put her weight on the normal baby chart at her birth age of 6 months. She was right at the 5% mark. That is awesome considering she should only be 4 months, was preemie and has DS! If you go by the fact that she should be 4 months, she falls in between the 10-20% for weight and 5-10% for length. I just find that amazing. Grow Rachel, grow!

Rachel LOVES to be outside or riding in the car. Her little face just lights up when I put her carseat in the backseat. She could be happy forever being pushed around in her stroller at the park. I know she is going to love running around in our backyard in the future!

She was visited by her EI therapist, Lisa, on Tuesday. She was still so very impressed with her social skills. No work needed there! (The pictures below are of her smiling at Stephen) She also said that Rachel was doing much better with her arms and reaching for things and even being seated she is starting to bear weight on her arms. That was nice to hear since Rachel hasn't been able to do much therapy due to her reflux. Her neck is starting to get tight on the one side again from lack of laying on the ground and we need to work on that. We don't want her cute little head to be tilted!

Happy 6 Months (Then and Now)

I can't believe it's been 6 months since we first met you. Looking back at these pictures, it's almost hard to believe our life with you started the way it did. You are perfect and we love you. Happy 6 months my baby girl!

Sitting Like a Big Girl and Other Cute Photos...

Rachel's head control has really improved over the last week...

and some other cute pics...

 

It's Like She Reads My Blog...

Of course, since I posted yesterday about Rachel not swatting at her toys, she decided that she was going to have to prove me wrong. I put her in her chair this afternoon in order to take a shower. I put it in the bathroom with me and we have a glass shower door so I can keep an eye on her while I shower. About 5 minutes in to my shower, I noticed her eyeing up the "bugs" that hang over her head and sure enough, she deliberately raises her left arm and hits the red bug. She is so thrilled with herself that she starts smiling. She does it again and again and keeps right on smiling. I extended my shower much longer than I needed to in order to just watch her enjoy herself as she played. What a girl! I was able to catch a pic of her eye balling her favorite toy - the red bug.

Let the PT Begin!

Tuesday, Lisa, the EI (Early Intervention) therapist came to the house to visit Rachel. It had been a month since she last saw her because of all of us getting sick. Now that Rachel is 3 months adjusted age, Lisa is really starting to look for Rachel to start moving and using her body certain ways. Rachel is still doing great lifting her head and her neck control while sitting up has improved greatly. She also isn't favoring turning her head to the right like she used to. She also let Lisa know when she was ready to stop the assessment! Her social skills are right on track. But, Lisa has noticed things that do need to be worked on and has suggested that it's time for a PT (Physical Therapist) to come to the house and work with Rachel on a regular basis. She wants Rachel to keep her momentum when it comes to her physical movements. Some of the things we need to work on with Rachel are reaching for toys, reaching her arms out while on her tummy which will help with crawling and continue working on her neck strength. She gave us some tips on how to help her with all these things.

Rachel is still young though and Lisa wasn't too worried. She expects Rachel to "notice" her hands and start reaching out for toys within the next couple weeks. Right now Rachel sees the toys and likes to study them but doesn't make that big of an attempt to reach for them or swat at them. She will hold them if we place them near her hands. She loves a cloth book that I bought her while we were in PA a couple weeks ago. It makes crinkly noises when she squeezes it and it has bright pictures of bugs. For some reason, she loves pictures of bugs. I think it has to do with the huge eyes they are given. Anyway, I am happy that we have this help for Rachel. I know it will benefit her greatly as she grows and starts to move. Can I tell you that I am ready for her to sit up on her own already. It will give her so much freedom!

A Ds Event and the Cystic Fibrosis test

Yesterday, Sunday, I attended my first Down syndrome family event. Is it ok to say I was really scared to go? Even though I have a daughter with Ds, I have never been around other children with it. I had no idea what to expect and I feel ashamed to admit that all those preconceived images danced in my head. The event was held at a gymnastics center. It was huge and there were a ton of parents and kids (with and without Ds). I got to see a couple moms that I met at a mom's night out some months ago and I got to meet their children. It was a wonderful event! Kids were running and jumping and laughing and parents were running and jumping trying to keep up with those kids. There was a little boy who isn't able to walk yet but he was scooting around on his butt like nobody's business! I cannot believe how fast he was moving. There was a little girl exploring and no matter how many times she tripped over a mat edge and fell, she got right back up and kept moving. There were no tears from that girl. She even made a point to stop and wave hello to another dad on the ground. Typical children played with children with Ds and there wasn't any staring or whispering. If only the rest of the world was like that one day in that gymnastics center. What a wonderful world it would be!

Today, we took Rachel back to Brenner Children's Hospital to be retested for Cystic Fibrosis. At the time of her birth, they tested her blood for it and it came back with a positive indication. Stephen and I didn't find out about this test until after we had already brought her home from the hospital and I was reading through her discharge papers. Needless to say, I was horrified and scared. I called the hospital right away and they reassured me that the test gives a lot more false positives than true positives. Rachel's blood was also really messed up after her birth because she lost most of it and received 2 blood transfusions. So, we were hopeful that she would be fine. To do the test, they have to collect sweat from her. They cleaned her legs then applied a medicine to help her sweat. Over that medicine, they put some wet gauze and then an electrode to stimulate the sweat glands. They kept that on her for 5 minutes. As far as we could tell, she didn't feel anything and in true Rachel form, she smiled through the whole thing. After that, they re-cleaned the area, put a piece of gauze on her leg to collect the sweat, covered it with plastic, taped that down, covered it with more gauze, then plastic wrap and then more gauze. Wow. They had to do the test on both legs. It took over an hour total to do the whole thing. Here she is being so good and waiting for the test to be over. You can see the gauze on both her legs...

After the test was over, they took off the outer wrapping, carefully removed the gauze that was on her leg inside of the plastic and put it into a glass vile for testing.

The woman who preformed the test said that the pediatrician would call us if the news was good but if the news was bad, then she or the genetics counselor would call us. We were told the test may be completed today but we couldn't count on it. The trip from Benner's to our house is 45 minutes. We walked in the door and the phone rang. On the caller ID is "Wake Forest Uni" which is the hospital. I'm thinking, wow, this in not good. I answer the phone and Stephen is already starting to freak out. The woman who preformed the test informs me that Rachel's test results were in and that she is NEGATIVE for Cystic Fibrosis. She also informed me that she isn't supposed to call and tell us but she wanted to let us know. What a wonderful woman! We are so happy to have that test done and out of the way. On to other worries...and there are certainly enough of them to choose from!

New York, New York!

A little photo shoot with wardrobe provided by Uncle Mike and Aunt Mer.

Visit with Dr. Pranikoff

Today, Rachel had another follow up with her surgeon, Dr. Pranikoff. We got to travel back to Baptist Hospital. We hadn't been there in at least a month which was weird. We got taken back to the exam room quickly (wow) and then Rachel was weighed. Now, last week, last Tuesday at her pediatricians, she weighed 11 pounds, 4 ounces and that was right when she started to get sick. Rachel was really sick all last week until Friday night when her fever broke. She has ear infections and a horrible cough now but last week she was barely eating as well. I was so afraid to see her weight today. I thought for sure she was going to be down half a pound. Well, I worry for nothing I guess. Rachel only lost 2 ounces and I know with the way she is eating again, she will gain that back by tomorrow. Whew. When you are the mom of a NICU baby, and you lived and died by the weight they gained (or didn't gain) then it's really hard to let that part go. Here Rachel was having a hard time breathing and her poor little ears hurt and I couldn't get over the fact she wasn't eating enough. Sometimes you have to take a step back and see what an idiot you are being. Anyway, Dr. Pranikoff was happy with how she was looking and how nice her scar looked and because we didn't have any problems to report, he sent us on our merry way. We will see him again in June and probably once more in September but then no more after that unless we have problems. I really don't think there will be any.

We stopped by the NICU with Rachel to donate some blankets and to see if some nurses we know where there so we could say hello. Unfortunately, they were not. So, I just want to say hello to Digi, Jamie, Sherri and even lactation expert, Martha if any of you are reading this. Though I am happy we are done with the NICU, I still miss seeing you guys. You were the light of my days there sometimes. I can't wait until Rachel is bigger and I can introduce her to you and she can say "Thank you" for herself for all that you did.

***It's really hard to get any pictures of Rachel smiling. She hates the camera. As soon as she sees it, she stops talking or smiling and just stares at it or looks away. One of these days we'll have to sneak some pics of some smiles as one of us holds her and talks to her because that is all she does most of the day. Since she stared feeling better, she talks to us constantly!

I've Been Awarded!

They must be giving these things out like candy or something because two people actually "nominated" me for this!

Well, thank you Courtney and Maddie!

Now for the rules...
Thank the person who nominated you and link to their blog.
Copy the award and paste it to your blog.
Tell us 7 interesting facts about yourself.
Nominate 7 bloggers that you love and link to their blog.

7 Interesting Facts

1. I hate being in the rain and cold. You want to see me really upset? Make me run errands in that crap.

2. I have more plants than I do people and pets in my house. Let's hope the plants never come alive or else we are done for.

3. I'm addicted to the video baby monitor. It's Rachel TV and it's always on!

4. I like Jay Leno. I think I may be the only person left on this planet, besides my dad, who likes him.

5. My husband and I met on Match.com

6. I get motion sick really easily. Boats and I are not friends.

7. Except for poop on a cracker, I pretty much like and will try any kind of food at least once.

7 Great Blogs (I'm not including the ones who nominated me but they would be on this list.)

1. A little extra by Conny Wenk

2. Daniel Drinker

3. Our Unexpected Journey

4. Conceive This!

5. Three's a Charm

6. Baby on Board

7. A World of My Own

Baptismal Weekend Photos

Just some photos from our weekend up in PA...enjoy!

Uncle Mike...clearly unsure what to do with a baby!
Rachel getting in some tummy time while watching TV.

Four generations...my mom, my grandma, me and Rachel.

Sleeping like the angel that she is...

Cake made by my cousins- Cassie and Crystal

The Family Guy Episode

Perhaps you saw the episode of Family Guy that centered around a girl with Down syndrome or perhaps you did not, but surely you've seen stuff on TV and online about Sarah Palin and her daughter throwing a fit about it. I have to say, I saw the episode and I thought it was great and so did many parents who have children with Down syndrome. There weren't any horrible jokes at this girl's expense but instead, the "message" of the show was that people with Down syndrome are just like everyone else (even if that means they are assholes sometimes). While driving up to PA with Stephen, I asked him who he thought was the voice for the girl on the show. He didn't know. Curiosity got the best of me and I had to Google it. Look what I found. -> GREAT STUFF. Enjoy.

P.S. Rachel hit 5 months yesterday! She is getting Baptised tomorrow and we have been spending the weekend with our family so I will have a bunch of pictures to post.

Down syndrome and Baby Shows/Websites/Books

When I am planning something, I become obsessed. I need to learn as much about that something as I can; my wedding and cake decorating being two examples. When we decided to start trying for a baby, I started reading about it online and in books. How to track your cycles, how to know when you are ovulating and all the signs and symptoms of certain issues became second nature to me. Once I became pregnant and stayed pregnant, I turned to what happens while you are pregnant. I bought two books, was part of a message board online, and looked up endless thoughts and questions on google. I wanted to be prepared. Well, as prepared as anyone can be. I was obsessed with TV shows about being pregnant, labor and delivery. One time, Stephen told my doctor that I watched those shows and she said I shouldn't because it will make me worry. But, it was just the opposite for me. I love watching those shows because I wanted to know the worst. I wanted to know the complications, the issues, the drama that could come with giving birth. I wanted to be PREPARED! I had a general "birth plan" but I knew, from watching those shows, that nothing ever goes the way you want. So, I wasn't expecting a perfect birth. HA. I certainly didn't get it. (Unless you count the fact that Rachel lived. I guess that would make it a perfect birth.) But I digress...

Now, looking back at all the information that was out there, it stuns me that I never ONCE saw a show where the woman gave birth to a baby with Down syndrome. I mean, even the ones who refused testing and really had no idea what was going on with their baby gave birth to a "normal" child. Why is that, I wonder to myself. Why, do they not show babies like Rachel on TV or talk about them on the What To Expect website or give more information in baby books? Why is anything about Down syndrome shoved to the back of the book, restricted to the "special concerns section" on the website, not shown on TV? Do they think Down syndrome will hurt people or upset them to see "that kind" of baby anymore than seeing a woman losing her baby's heart beat and being rushed for an emergency C-section or a woman who's baby doesn't breath after birth? IT IS THE MOST COMMON GENETIC "DISORDER". Why isn't there more out there?

Well, I only have one answer. People are scared. They can take the C-section, the heart rate drops and the eclampsia as long as they get their perfect baby in the end. So much so that when given the option of having their baby with Down syndrome or aborting, they chose the later in the majority of cases.

I have to say that Down syndrome has become my next plan. My next obsession. I feel it in my heart, burning, to reach as many people as possible, show them my Rachel, and ask them...

"Is this what you are afraid of?"

Happy Valentine's Day!

Rachel wasn't in a picture taking mood but I still managed to get a couple good ones. The bib is from Great Grandma Wargo.

I Hate Hats

Reading a Book

As baby shower gifts, I received a couple of baby books. I stacked them on the shelf in Rachel's room before she was born. I thought about how I would snuggle up with her on the glider at night and read to her. Then life happens in a way you never thought it would and you end up scared in a hospital. After a few weeks, I brought some of those books to the hospital to read to Rachel. I figured that it would help her recognize me and give me something to do in the hours that I was there. I tried and failed many times to read I'll See You in the Morning without breaking in to tears. The book talks about the mommy (or daddy) tucking their child in to bed and how the night isn't scary and how they will be there for them and see them in the morning. Every time I would read those words, my mind would start thinking about how I wouldn't be there at night if she cried for me and I wouldn't be there in the morning when she opened her eyes. Reading the book made me feel like such a horrible mother and I eventually stopped.





A mother of a friend of mine has sent Rachel a book every holiday so far. Rachel has received one for Christmas, Halloween and now Valentine's Day. The book Rachel received for Valentine's Day is called Mama, How Long Will You Love Me? I read it to Rachel the day I got it in the mail and, again, tears streamed from my eyes. (With a title like that, I knew I was in for it.) But this time, it was because I was thankful to be able to read that book to her in our home. I was thankful to be looking at my healthy, beautiful baby without the hospital tubes and wires and beeping noises. I am so thankful that I will be able to read to her for many years to come. I can only hope that these tears stop falling in those coming years or Rachel will start looking at me funny. :)