May 26, 2010

End of the Day Pictures

We had a follow-up with the GI in Greensboro today. He was oddly nicer to us (did he find out we were going to see someone else?) and agreed that putting her back on the Prevacid twice a day was fine if it was the only thing that worked. He also said that her diarrhea could be a result of the formula she is on. Because it is already partially digested, it could be just how her system is reacting to it. He didn't seem very concerned. I guess we'll just wait and see what the stool tests say and go from there.

Here are a couple pictures of Rachel before bedtime. She's a little sleepy head. :)

May 24, 2010

Poop, Reflux and Relatives

I'm really tired of both of them and I know Rachel is too. I think we are finally on a path to narrowing things down though as to what is causing her chronic diarrhea. We know it isn't Celiac. Her formula is gluten free. We stopped feeding her solids for the time being so we know it isn't those. (The diarrhea started the same time we started feeding her solids-three weeks ago). Her surgeon called us and told us the symptoms if her surgery was failing. He said before that if something was going to go wrong with her surgery it would be when we started solids. The symptoms he gave us do not sound like what is going on with her. So we can cross that off the list. We are going to give a stool sample to our pediatrician so they can test it for parasites and the what not. If that comes back clean (no pun intended) then we know that it's either food related (formula allergy issues) or something is going wrong inside her little tummy. I'm sure we'll start by changing formulas, again, for the hundredth time. UGH.

(got your glasses, mommy!)

We have an appointment with a new GI in July but that is such a long time away. I have to call this new doctor's office every day now to see if someone has canceled and if we can slide in. Please cross your fingers that we get in soon. Rachel's reflux is also barely under control. Today wasn't a very good day in that department. Lot's of arching and some crying. She's slowly eating less but who knows if it's because of the reflux or because she's just gotten through a growth spurt. The Prevacid and formula changes have really not done a whole lot, but then again, I would hate to see how she is without them! She is also still moaning at night. We've just turned off the monitor sound and have our door cracked so we can hear her if she really starts wailing. I don't like doing that but it's the only way we get any sleep. It's still amazing to me how, even though, she isn't feeling her best, she can still have the best little smile around.

(it looks like she wants to strangle me but it's still funny!)

Yesterday, my brother and his wife stopped by on their way back up to NYC from Charlotte. I don't get to see my brother very often and I'm really happy they stopped by. Rachel really liked seeing her Uncle Mike and Aunt Meredith too! We had a nice dinner outside with our friends. My brother marinated some steak and it was delicious! They took a ton of photos so I'll post them when I get them.

My favorite Rachel...

is a naked one! These were taken a day after she got over her latest sickness so she doesn't look her best. But, I still think she is the cutest "naked" baby ever!


May 18, 2010

You Down With ENT? Yeah, You Know Me!


Sorry, busting out my old rap skillz. Did I just give away my age? :)



Today was a big day at Brenner's. Rachel had her hearing tested and she did Ok. They explained that she is hearing high pitch levels fine but the mid-tones didn't seem as good. They said it could just be the wax in her ears and her tiny ear canals. The woman who gave Rachel the test also said that the most important sounds for her to hear are the high tones. She also tested to make sure Rachel's eardrums were moving and they were. So, for now, we don't worry and then go back in September for another check up. Hopefully, it's just wax and small ear canals for now and next time will be better.

(Rachel trying out the big girl chair)


We met with a new ENT as well. We took Rachel to an ENT in Greensboro a couple of months ago and he bascically told us she was fine. We sat on that for a couple months. I've always been concerned about her sleep. She is really restless and arches. Most recently she has been having short episodes where she stops breathing, coughs or snorts and then starts breathing again. She has always needed a ton of naps during the day to keep from being crabby and all this together has us thinking that her arching may not be from reflux like we thought. We think she sleeps that way because it's the best way for her to breath. So, we decided to get an appointment at Brenner Children's Hospital. (Man, do we love that place!) As we stood at the desk to sign in, an exam door opens and out comes Ben. He is a little boy with Down syndrome. At that moment I knew we had made a good decision. The new ENT, Dr. K, took all our concerns seriously. He did a quick scope of Rachel's nose and throat. He said everything looked normal. He then scheduled a sleep study to be done on Rachel. Thank you! I know we will learn some much needed information from this study. Either we find something wrong that we can help Rachel with or we find nothing and concentrate on the reflux. Can I tell you how happy this makes me? Finally a doctor who wants to help us and Rachel and not just blow us off as over paranoid first time parents.

(having fun with herself in the office mirror)


We then stopped by the NICU to say hello to some old friends. I am now kicking myself because I had my camera and I DID NOT GET A PHOTO OF THEM WITH HER! Argh! I guess we'll have to line something up next time. Maybe in September when she turns a year old. It was great seeing everyone and if you are reading this, I'm sorry she wasn't in a good mood. She had a long day and it was getting close to bed time. Jamie, I think Rachel remembered all the country music you made her listen to and that is why she cried when you talked to her. :)


May 15, 2010

Note From Rachel and Random Updates


Rachel was getting jealous of me blogging and so she decided she wanted to try this "blogging stuff" out. Here's what she had to say...... df , wtrrtt 45x5,t, x uk uk uk hiimiukh8jb v v n fn f b.

I think she was trying out her math skills and then her geography skills and a little foreign language? I don't know, but she was happy with how it turned out! Below are some pictures of her in her crib playing. She didn't realize I had the camera in the second pic. Whoops!



I've introduced solids to Rachel over the last two weeks. She really likes eating new things and does well with the spoon but, unfortunately, her little tummy doesn't agree. The peas and sweet potatoes gave her diarrhea. I've been told to wait a couple days and try again with a more bland food, like carrots, and see what happens. The nurse said it could be her stomach just getting used to the new foods. I don't know. I have a feeling her stomach will react the same way with the carrots and then I'll be on the phone with the pediatrician's office again.

Tuesday, we have a long day at Brenner's. Rachel has a follow-up appointment with hearing and speech at Brenner's (hearing will be tested again) and she also has an appointment with the ENT there. I am so happy. There is something going on that is keeping her from sleeping well and sleeping in a C position. We used to think it was all reflux but we are noticing more that even when she sleeps in a more upright position on our chests she stops breathing and then kind of snort/gasps for air. It sounds like something gets stuck and she can't breath. I just want her to be able to sleep comfortably. I'm also concerned about her breathing because every once in a while, he legs turn blue. I have told the pediatrician about it and they say that this too is pretty normal but, again, I don't by it. If it continues I will let them know. The first thing that comes to my mind is heart problems but as far as we know, her heart is fine.

Thursday is another big day. We are seeing the geneticist from the hospital again. He was the one who talked to us about Rachel right after we came to Brenner's. I am really not sure why we need to see him again. I guess he just wants to make sure we are OK with Rachel having Down syndrome and that we aren't depressed by it. We have an appointment with a GI doctor in July at Brenner's. I wasn't thrilled with our GI doc here in Greensboro but Stephen really didn't like him. She had her Barium swallow test done two weeks ago but we haven't heard anything about it yet. Rachel is back on Prevacid twice a day because it's the only thing that works right now and her current GI doc isn't giving us many options.

On to cheerier news...The last couple of days it's been pretty hot here and Rachel has been enjoying her pool. She has a friend, Jonas, that she sees on a pretty regular basis and he came to enjoy it as well.
Jonas

Both love Magic Sprinkles!


Rachel has also been working really hard in therapy and on her tummy. She has gotten so good at rolling from back to tummy. She actually prefers to be on her stomach now. She is going about 3 hours between naps (or needing naps since it's rare when I can actually get her to take one!) and is going 3 hours between feedings. Every day our girls gets bigger and more active. She's just too darn cute for words and I have such a hard time paring down pictures of her!


May 9, 2010

Meeting More New Friends!

Rachel and I got invited to a play date with some new people. We had a small photo shoot and a little play time. We had a really good time (except for that scratchy grass!) and can't wait to do it again!

May 6, 2010

Spinal Muscular Atrophy

Stephen and I recently decided to get a whole battery of testing done on our genes. Even though Rachel having Down syndrome was not a result of a hereditary thing, we wanted to make sure there wasn't anything else we needed to be prepared for when we start trying for another baby. I found out that I carry the SMA gene. This is something that I wasn't prepared to know. No one in my family, either side, has even had this from what I know. Stephen then needed to be tested for it to see if he was a carrier too. If he was a carrier, our next child had a 1 in 4 chance of having this disorder. SCARY. But, thankfully, he does not have it. Our next child and Rachel, now just run the risk of being carriers. Something I have to remember so I can tell them when, or if, they decide to have children. I also told my brother and the rest of my family so they know it's floating around in our gene pool somewhere and that they may want to test for it when it comes time for them to have babies. Has anyone ever known of someone who has this disorder?

May 4, 2010

Big Trip Home to PA

From April 28th until May 3rd, Rachel and I went back home to PA to visit family and friends. Rachel had a lot of "firsts" on this trip. It was her first trip on an airplane. She did fantastic. All in all, we spent on average 7 hours traveling to and from our destinations and she didn't complain once. Ok, she complained once, but it was only because I wasn't fast enough with the food. She fell asleep on the airplane some times. Other times she was awake and playing. Other passengers couldn't help but comment on what a good little girl she was....because she was! I know they were shocked that she didn't end up screaming the whole time. Rachel sure showed them!



While home, we met up with some of my old high school friends and their babies for the first time. Their babies, Brooke and Lydia, were born in December. Rachel and the girls were only supposed to be born a couple weeks apart so they are about the same age gestationally. Again, we had another big hit with that one. They loved to stare at each other and try and grab each other's toes, faces and bibs. Rachel loves to look at other babies.
Brooke

Lydia


We also got to visit a lot of family members. Rachel saw her grandma and grandpa Cooklis, Great grandparents and some cousins. She also won over her grandpa C's dog, Butter.


We found out how much Rachel loves grass. As soon as she touches her feet to it she gets so excited. When I put her down to sit in it, she reaches for it and pulls at it. Her therapist is thrilled because sometimes babies with DS have sensitivity issues to new feelings, like grass.



But the biggest first of all was Rachel went from back to tummy for the first time on the 30th. My mom and I were the witness to the event and it was so exciting! Rachel panicked halfway through because she was stuck but she got her leg over and made it to her tummy! Since then she has done it at least once a day more. Of course, I don't have a picture of that though.