Caydee's 1st Therapy visit

This past Wednesday afternoon was Caydence's first therapy visit with her Birth to Three OT (Occupational Therapist) Suzy. She showed me so many things that Josh and I can do with Caydence to help her development. Suzy worked with her for about 45 minutes.

She started with some hand and foot play; clapping Caydee's hands and feet together and getting her to touch/grab at her toes. She showed us how sitting her in the boppy brings her shoulders forward and can help bring her hands together and hold on to toys. To help with her visual tracking she suggested bright/ high contrast toys, shiny reflective toys, or toys that light up. Since Caydence didn't have a lot of toys yet, I found some shiny cat toys we had and some reflective ribbon.

She put Caydence on the boppy on her tummy and showed us how to best position her. She showed us how we can tap on her chest to make her lift her head. She also suggested placing a toy or something interesting to look at in front of her to also motivate her to lift her head and help with her neck muscles.

We've always been told that babies with Down syndrome have such low muscle tone. But I haven't really been around a lot of babies, so I couldn't really tell how Caydence was. Then when Melissa brought her baby Olivia over the other day, I finally understood what they were talking about. Olivia is so much sturdier and stronger than Caydence. Caydence is so floppy.

Since Caydence is starting to develop an aversion to things being in her mouth, Suzy showed us how we can massage her cheeks and tap around her lips to stimulate the muscles. She also suggested trying to put things like teethers and other toys in her mouth so she gets used to it more.

The next day Josh and I went to Babies R Us and Target and bought some toys for Caydence. The therapist suggested getting some links that Caydence could easily hold on to and put in her mouth, so we got a package of those. And we got an Eric Carle lion mirror toy, a Baby Einstein cow teether/vibrator toy, some Infantino tag along chimes, and some teether keys.

Later that night when we got home, Caydence got to try out her new toys. I gave her one of the links. It was her first time grabbing anything with both hands! Here's a pic!



I remembered that our friends Angie and Bob let us have one of their kids play gyms so I set that up and hooked all her toys on it.



I hung the tag along chimes by her feet so every time she kicked her feet they would make noise.



Over the past couple days I've noticed that she has started playing with the toys and hitting them, realizing she can make them move. Then I looked over and she had grabbed one of the links! I was so proud of her!



Way to go Caydence! <3

Caydee's 1st Play Date

Wednesday morning Caydence had her first playdate. My friend Melissa came over with her baby Olivia who was born last month. They didn't do much, but it was cute to see them together. Here's some pics...

Showing off their big bulky biceps...



Pretending to fly...



Cuddling...



Olivia cries, while Caydence takes a nap...

2 Month Check-Up

So much has happened during the past week and I have been a total slacker on blogging! So, in order to not overwhelm you with one long post. I'm going to try and break it up into little ones. How's that sound?


Last Friday was Caydence's 2 month check-up with her pediatrician. Our little stinker weighed in at 7 lbs, 8 oz. She is getting so big! She has gained 3 lbs now since she was born. Unfortunately for little Caydee she also had to get her 2 month vaccines at this appointment :(. She had a little medicine she had to take and then got 3 shots. One in her right leg and two in her left. :( Poor sweetheart.

She was vaccinated for Hepatitis B, Polio, Pneumococcal Disease, Diphtheria, Tetanus, Pertussis, Rotavirus, and Hib. Obviously, since Josh and I have never had a baby before we didn't know that babies can get fevers from vaccines. After the nurse gave Caydence her shots she told us that usually parents will give their baby Tylenol right before their appointment. (They could have told us that earlier...). But anyways, they gave us some free infant grape flavored Tylenol which we took home.


Over the weekend she went to her first cornboil as well as a wedding shower and was able to meet my Mom's extended family. She met 3rd cousins, 4th cousins, 5th cousins, great great aunts and uncles, and even some Great Great Great Aunts! She was pretty sleepy for the most part and ended up getting a fever later in the day from her vaccines the day before. But we fought it off with the Tylenol (which she didn't like). I thought she would like the Tylenol. It smelled like grape candy, but then I tasted it... Not so good! She is all better now though. :)

You'll noticed I've added some more links on the right side of the page to some more wonderful blogs that I came across. Enjoy!

Birth to 3

Tuesday afternoon a couple ladies from Birth to 3 came over. We went over Caydence's RIDES evaluation (Rockford Infant Developmental Evaluation Scales) from August 12th and then made goals for her to work on in the coming months.

The Rockford Infant Developmental Evaluation Scale is an overview of skills in the areas of Personal-Social/Self-Help (How the child interacts with others and responds in different situations), Fine Motor/Adaptive (How she uses her vision and hands for reaching and grasping), Receptive Language (What she understands), Expressive Language (What sounds she makes), and Gross Motor skills (Large muscle movements).

• Personal-Social/Self-Help: Caydence completed 2 out of 4 skills at the birth to 1 month level with emerging skills up to the 3 month level.
• Fine Motor/Adaptive: Caydence completed 1 out of 3 skills at the birth to 1 month level and 1 out of 6 skills at the 1 - 3 month level.
• Receptive Language: Caydence completed 2 out of 3 skills at the birth to 1 month level with emerging skills up to a 3 month level.
• Expressive Language: Caydence had emerging skills from up to a 1 month level.
• Gross Motor: Caydence completed 2 out of 8 skills at the birth to 1 month level.

Obviously the therapists will work on all sorts of stuff with Caydence, but a couple specific goals we set for her for the next 6 months are:

• For Caydence to be able to follow a moving object with her eyes and head and turn toward sounds.
• For Caydence to get stronger on her feedings so that she can take more by bottle.
• For Caydence to be able to push up on her arms while on her tummy

We are going to start weekly therapy visits next week. They will be able to show us things we can do with her to help with her developmental delays. I can't wait to get started!

Here is a pic of Caydence doing some tummy time on her boppy:


Caydence prefers to lay on the right side of her head so she's getting a flat spot. Her doctor said to put stimulating things on her left side so she will lay on that side more. I had read somewhere that although babies can't see very well, they can see contrasting colors very well. So I found some black and white stuffed animals and put them on her left. They seemed to interest her...

Caydence goes to the Cardiologist

Below is a rare photo of Caydee without her tube. You can actually see her whole face without any distractions!!! We have to change it out every Friday and we took this pic between tubes last week :)


This afternoon Caydence had her first appointment with her cardiologist since leaving the NICU last month. They started with an electrocardiogram which is basically an ultrasound on your heart.

Caydence did NOT like that. It isn't painful or anything. The technician just uses a little baby transducer with jelly on it and rubs it lightly around on her chest to get images of her heart at different angles. They can also look at the blood flow within the heart to see how much un-oxygenated/oxygenated blood is mixing where her holes are, as well as listen to the blood flow within the heart.

Initially we just laid Caydence on the examining table, cuz she looked kinda tired, so we figured she'd just lay there. The tech turned on some nice lullaby music and dimmed the lights. But after a bit, she started to get fussy and squirrel around so the tech had to stop cuz he couldn't get good pictures with her moving all over. So then Josh had to hold her while the tech kept doing his thing. She still was kind of squirrely, but we muddled through.

After the Electrocardiogram, we went into an examining room and the nurse took her oxygen saturation and blood pressure. Initially her oxygen was in the mid 80's, but the oxygen reader must have been in a bad spot cuz when the nurse moved it she was able to get a reading of 95. Which is good, cuz they like for it to be between 95 and 100. I think her blood pressure was good, but the nurse didn't comment on it.

Next Caydence got weighed and measured. When she was born she was 17 inches long and 4 lbs 7 oz. Today, she was 20.75 inches long and she weighed in at 7 lbs 3 oz! She had gained 8 oz since she met with her pediatrician a week and a half ago. Once the nurse was done taking all her vitals, we got to meet with her cardiologist. He thought that, although she is gaining weight, she could be gaining a little more. So over the next four weeks we need to slowly increased each feeding from 48 mls to 59 mls.

He had just looked over her electrocardiogram and thought things were looking good, (except for her holes). He is still thinking that she will not have her surgery until she is 6 months to a year old. He wants her to get as big as possible before having her surgery.

For now her medications are helping her heart along. The only reason to do her surgery earlier is if she stops gaining weight, or starts showing signs of heart failure. He said that since she is taking her medications, she most likely won't show any signs and then they'll just schedule for sometime next spring.

The only downside is that since she's not going to have her surgery for awhile, I'll probably be out of work and so then Caydence will only be under Josh's insurance, which doesn't cover her current doctors. So now we'll have to switch to a different hospital and different pediatricians & cardiologists. :(

In the event that we DO have to switch doctors, our current doctor gave us the names of cardiologists who he knows and recommends in Josh's network and he reassured us that they would be quite capable of taking good care of her. So that made us feel a little better. We'll have to see how everything pans out.

Meanwhile, Caydence is doing well, and that's what is most important! <3

What a crappy night, seriously!!

Daddy here:

I don't have too much to report yet, as her doctor's appointment is on Thursday and her next birth to 3 class is on Wednesday but I thought you might get a kick out of what happened tonight.

When I got back home tonight Jenny was getting Caydence ready for her feeding. She had given Caydence her medicine already and was in the process of changing her diaper so I thought I would help out. Well, Caydence started to poo which typically isn't a big deal but tonight apparently wasn't just any ordinary night. Caydence kept pooing and pooing for awhile and we had to change her diaper a couple of times, which again, isn't all that unusual. But then, just when I thought it was safe to clean her up for the last time it happened....what happened you ask? PROJECTILE POO!!! Seriously, I thought she had to be running on empty at that point so I wasn't paying attention and she let it fly. After all was said and done, Jenny was a casualty of war, poor thing. She was a direct hit and all she could do was laugh at the whole thing while my jaw dropped. I guess what they say is true, when it's your child there isn't much that you won't be able to clean up or deal with.

Anyway, Caydence was cleaned up and things continued as usual for the rest of the night. I just thought you might get a kick out of our little excitement for the day. We'll make sure to post after her doctor's appointment so you all know how she's doing. Anyway, I guess I'll talk to you all later.

Take care from Caydence's Daddy

8 Weeks Old

I can't believe Caydence is 8 weeks old today. Time sure does fly. There hasn't been much to write about as of late. Next week will be her big week. Wednesday will be her first visit with the occupational therapist from Birth to Three and Thursday we meet with her cardiologist and she'll have another echocardiogram. Hopefully he can give us a better idea as to when her surgery will be.

Right now Caydence has her days and nights mixed up. She usually wakes up around 6 or 7 pm and is awake all night. Right now it's 4am and she's still wide awake. Hopefully we can get her switched around some how. I feel bad because when friends and family visit, she's always sleeping. They never get to see her big beautiful eyes.

A couple months ago I came across an article written by Melissa Riggio; a girl who has down syndrome. It is a beautiful article and very inspirational. Please click here to read it.

Unfortunately, tonight I came across another article about her and found out that Melissa passed away last year at the age of 20 from leukemia. She was the daughter of Barnes & Noble CEO, Steve Riggio. This article outlines how Steve was inspired by his daughter to create special section of books about children with special needs. He realized after his daughter’s birth that books about children with disabilities were scarce and often difficult to locate. Today, Barnes & Noble offers more than 3,400 items in the company’s “Children with Special Needs” collection.

God bless Melissa!