Reason # 652

For why I love Brenner Children's Hospital. The doctors don't look at you like you are crazy when you have concerns about your child. If it sounds concerning and you are concerned, they investigate it. I love our pediatrician(s), but sometimes I feel like they roll their eyes at me when I come in with Rachel. I know I'm over protective about her health but my motto with her has always and will probably always be "get it early before it becomes a huge issue that impedes her growth/development." That isn't very catchy, I know, but it's how I live.

going to a birthday party

Anyway, We had a follow-up with Rachel's geneticist, Dr. Chad, today (yes, he goes by Dr. Chad). He asked us questions about how Rachel is doing, how her reflux is doing and how she is progressing. I asked him about her head tilt. I told him how her ophthalmologist didn't see an issue with her eyes and how her PT checked her muscles and couldn't find any muscular reason for it, as far as maybe one side is tighter than the other. He said the next step would be to get an x-ray to make sure her bones were aligning correctly. Where do we go if that comes back ok (pray it does!)? Well, I don't know. Her head tilt worries me. There has to be a reason why she holds her head like that and I can't believe that it's because she wants to. She's only one and it's always been an issue. It's certainly not a phase that she is going through. Anyway, an x-ray will be set up soon and I'll report on how that goes.

rachel launching to give a "hug"

Rachel has been on the Simply Thick for a couple days now. It works pretty good. We had one full day of no spit up at all. It was amazing. She's spit up some recently and I think it has to do with two things. One, the Simply Thick has to be shaken into her formula which causes bubbles to become trapped in the formula. The bubbles can't rise because the formula now has the viscosity of glue so Rachel gets more gas. Two, we've started her on milk. She's only gotten it once a day but soon after drinking it she gets crabby and spitty-uppy. Her formula is lactose free. I think I'm going to get a lactose free milk to see if that helps. I'm also going to start giving her simethicone gas drops again. I thought we were done with those. Oh well. I guess if it helps I can't complain.

loungin' on the pillow

loungin' on the dog bed

In other news, Rachel has gained some weight and is now at 18 pounds. She also grew a huge 1/4 of an inch to be at 26 3/4. It took her 3 months to grow an inch. No wonder she was in her 6-9 months clothes forever!

She has been doing so fantastic with feeding herself and hasn't turned away from any of my "cooking." She is also getting into everything. We used to put a blanket down on the floor for her to play on but for the past couple of weeks she wants to be everywhere BUT on that blanket. It has been put away. Rachel will follow me if I go into the bathroom or if I step outside to get the mail, I have to be really careful when I open the door because she is usually right there waiting for me. She's also gotten into the dogs water bowl a couple of times to splash around in their water. I'm counting my blessings that she hasn't figured out how to open cupboard doors yet!

More Photos, OT Assessment and Food

special thanks to aunt melissa and uncle frank for this outfit :)

Halloween was a good day until I decided to do a "photo shoot" outside. Rachel seems to be really allergic to grass. Soon after coming inside her nose started to run, her eyes were watery and she was miserable. I didn't even know if she would make it trick or treating.

come off....

come off already!!!

alright, i give up and i'll just eat some of this grass...

But she did and we had fun. It was nice to be able to be out trick or treating again. Sometimes kids give you great excuses to do things you normally wouldn't be able to do as an adult.

Rachel had an assessment for OT today. It went well. I love the OT and it's looking good that she will be working with Rachel once a week. She's going to help us with fine motor skills and strengthening the muscles in her mouth and lips. We will also be upping Rachel's PT to once a week. So, she'll have PT, OT and EI therapy. Yep, she's my part time job.

We also finally got the Simply Thick and have started using it today. So far so good....no spit up! And, (insert drum roll here) I think we have moved into only finger foods. No more baby food! She will still get fed yogurt by me and maybe some fruit puree here and there but everything else she will feed to herself. It's been nice sharing meals with her. Today we had pancakes with syrup, grilled cheese and chicken fingers, sweet potato fries and green beans. Next on the list of things to do...switch over from formula to milk.

Halloween, One Year Later...

Last year we spent our Halloween with a little girl who looked like this...

This year I had the pleasure of photographing this cute thing...

What a difference a year makes. Happy Halloween everyone! More pics will be posted tomorrow.

Changes

Along with the changing of the leaves, we've seen some changes in our Rachel. Since she's gotten through her funk (we still don't know what that was all about), her joyful self is back! Such a happy girl once again and I can't be more thrilled about that.

Rachel has gotten a bit longer. Her little feet now touch the back of the Honda's car seat while she's sitting in her carseat. She moves around constantly. The only thing that stops her in her tracks is a band playing on the TV or a music video. She also hasn't gained any weight in a month. I think the fact she hasn't gained any weight is because of all that movement. It's weird because pants that were too tight on her are now too loose. I am constantly feeding her though. Maybe I need to invest in some weight gain shakes like body builders use? :)

Rachel is also turning into a child who can fall asleep in her carseat and can be taken out of her carseat and put her in her crib without her waking up. Yay! Before recently, any little noise or movement of her body out of the seat would have woken her completely up. This is a change I'm glad to see.

Her PT also wants her to wear shoes for support now that Rachel is pulling to stand and learning to cruise furniture. I can't say that Rachel likes the shoes too much. I'm waiting for the day she figures out she call pull the velcro and get her feet out. I know that day is coming soon. She's a crafty thing. I've found a cute pair of sketchers at Rack Room that I plan on getting her. They are black and pink. Very cool.

Rachel had an assessment done for speech today. After weeks of her saying "dada", she had decided to stop really saying anything once again. She "scores" weren't all that great. But, I know that even if she can't babble the same as typical kids her adjusted age, I know she understands us and we understand her and that is all that really matters.

Tomorrow we are going to a birthday party and then Sunday is the big day of Halloween! I can't wait to get her all dressed up in her costume!

Rachel and Dust Buster....

sitting in a tree. Ok, maybe not really but Rachel loves it for some reason. I love watching her be a weirdo. Right at minute 2 is the best part. Enjoy!

Lazy is NOT in Her Vocabulary

Not much else I can say about this video really but this will give you more of a glimpse in to how I spend much of my day. :)

What We've Been Up To

Soooo, it's been a while. I'm sorry. It's not you, it's me. Really, you're great and I've been meaning to write but Rachel's been keeping me busy!

We've been on the go the last couple of days. We went to Touch-A-Truck which gives kids a chance to go inside a number of different vehicles like a police car, a milk truck, an ambulance. The Tumblebees bus was also there. Tumblebees is a gymnastics center and they have buses with some tumbling items inside. Rachel likes the small trampoline.

That was the only "truck" that she took any joy in. We got there around mid-afternoon and she started going downhill fast. I had to leave my poor friend there with her two boys in order to avoid a complete screaming fit. Thankfully, she fell asleep in the car on the way home and got a good nap in.

She's also been practicing pulling up like crazy and has gotten back in to rocking on all fours and even taking a few "steps" on her hands and knees before dropping to her belly to army crawl. She gave up rocking when she found out she could get to sitting from that position but I think army crawling is become too slow for her and she wants a faster way to motor around the house.

 

And don't let that cute smile fool you, she's been a complete crazy person lately. I have no idea what is going on but she has been having mini-meltdowns left and right. Once minute she's sitting there with me smiling and the next minute she's throwing her head back and falling to the floor crying. She's not eating as much formula as she used to but seems hungry all the time. She's also been really sleepy and takes her morning nap and then if we go someplace she's out cold every time we get in the car, which is really weird for her. After a nap she'll be ok for an hour or two and then she starts fussy and making her "I'm tired" hand gestures on her face. Over all, just not her usual happy self. I've checked for teeth and I feel/see nothing new coming in. Her temp has been a little higher than normal (around 99/100). Anyone have any ideas? 

My mom came into town on Friday and we went to the Pugs and Pals Picnic which is hosted by the Pug Rescue of NC. Even though Stephen and I are members and have fostered in the past, we haven't been able to support the rescue like we would like so I made a cake to bring as a little good will gesture. 

 

Looking at the pictures of Rachel makes me see that dang head tilt and it's become so annoying to me! I want my poor girl to have a straight head. Who, besides her PT, do I need to see? Should I get a diagnosis of Torticollis from her Pediatrician to get some real help?

A Day with Pumpkins

Today, we went to Kersey Valley Farm to meet up with some friends and take a gander at the pumpkin patch. Well, we tried to get their to meet up with friends but Rachel did her classic "take a long nap when we are supposed to be leaving" trick. She usually only takes an hour nap max so I put her down at 10:45 thinking she would wake up by 11:45. Nope. She slept until 12:30. Yeah. So I fed her some food and off we went. What a beautiful day it was today too. Could not have planned a bluer sky. This was Rachel's first time seeing a pumpkin.

please tell me why we are here?

got a little too into the giggle

She also posed with Daddy on Elsie the Cow and on a truck with Mommy.

We walked around the farm after that. They had a corn maze, trolly ride and a couple other events that will be great for Rachel next year. I could totally see her running around that place. Before we left we stopped at a "dinosaur dig". The farm had a big area of sand for kids to dig in. Rachel never felt sand before so this was new to her as well. As soon as I plopped her in it, she was happy. That's my girl! But, I'm sure she regrets trying to eat some of it. Let's hope we don't have a repeat of that next summer.

i don't like sand in my mouth

Little Dancing Girl

Rachel has found her rhythm! She has always loved listening to music and always stops what she is doing to turn to a music video on TV (or the local TV channel's weather commercial) but she has never "danced." We got her a new toy the other day and one of the tunes on there tickles her something crazy. A wide smile crosses her face and she bops her little head up and down and bounces on her butt. Just the cutest thing I have ever seen. Rachel's little dance has slowly crept over to other tunes from her toys. I've tried getting it on video a number of times but she knows when someone is watching her and stops what she is doing as soon as she sees that camera. I managed to get a couple of pics, but I think she wants to make sure her "steps" are perfect before we are allowed to debut it online in video form. :)

Wave of Light

Light a candle for those of us who have lost a child before birth, during or after. No matter when you lose a child, they are still your child and you never forget. Light a candle on October 15th at 7pm to honor your angel babies or for the angel of someone you know.

Shock to My Heart

The other day I was talking to my friend about how I sometimes wonder if people know Rachel has Down syndrome. For example, if I'm out at a store and someone comments on how cute she is are they quietly wondering to themselves why she looks different than most kids? Why she is so small when I tell them she is 10 months old (I say her adjusted age to avoid explaining why she looks so small for a one year old!)? I told my friend I wouldn't care if people asked or noticed because I would rather they say something then walk away without.

Sometimes I think life has a way of giving you what you need. Yesterday at Carter's, my heart got a little shock. I was with Rachel and one of the store employees came over to see if we needed any help. She knelt down to "talk" to Rachel. The usual "Oh, she's so cute!" was followed by "She has Down syndrome, right?" BOOM. I think my heart stopped for a second. That was the first time anyone has ever asked me that question. Without skipping a beat I said "yep." I never in a million years thought I would feel that jolt. Maybe I still have some healing to do - even a year after her birth.

Getting Over a Virus

Sweet Rachel got sick last Wednesday night. She started with a fever of 101 that progress to 103 by Friday afternoon. She was also throwing up a bit and was pretty congested. Her fever broke Saturday morning but it's taking a while for our girl to get back to her normal self. She is still congested and I think it's impacting her sleep. She is so sleepy during the day, you can just see it in her face, and is very cranky. Today was better but the last couple of days nothing we did was right. That is so frustrating. But, she has also been eating like a cow. That girl is putting down some solids. Rachel has always liked her solids but about 2 oz. was all she would take in one eating. Now she has 4 oz. and finger foods three times a day along with her formula. I think she would eat more if I let her but I'm concerned she won't be able to drink enough formula then. I am hoping that this is either the beginning of a growth spurt or just her way of getting over her funky illness. Anyway, she still found time to model some new clothes (brown is the new pink).

mom, this hood is too big!

daddy snuggle time makes the blues go away

after our walk today

her jeans are actually tights! they rock!