Wednesday, March 28, 2012

St. Patrick's Day

Waverly had the perfect shirt for St. Patrick's Day!  If it were completely accurate, it would have said "Ten in a Million", which are the actual odds of her syndrome.  But we certainly think she is one in a million! 


Big brother and big sister wanted in on the photo shoot too!

Tuesday, March 27, 2012


I am a little late posting this, but wanted to post the fun and interesting pics from our snow last month.  Enjoy!
Baby's first snow!

 Johnny took the camera out after dark and got some cool shots.

 The next morning, the scene was beautiful!

The snowman the kids built.

Sunday, March 25, 2012

Some hospital pics

Please excuse the poor quality of these pics.  They were all taken on my phone, but were too cute not to share.  Some pics from the hospital.

Big sister missed her little sister!  So excited to come visit and hold her!

A smile despite feeling so poorly.  We haven't seen smiles in a few days now.

One crazy thing about being in the hospital was that we were able to share our room with Ryan, the only other kid in the state with Miller-Dieker like Waverly (as far as we know, they are the only two!).  A couple days after we had been there, Julia texted me that Ryan was feeling poorly and they were bringing him to the ER.  I did a little arranging, and we were able to be roommates!  The chances of that happening are crazy, but we were both thankful to make the most of a bad situation (being in the hospital with sick kiddos) and spend the time together.  We quickly realized that we were sisters separated at birth, and the time passed so much more quickly to be there with each other.  It truly was a blessing getting to know each other better and spend time with each others' kiddos.  Ryan was able to go home on the same day as Waverly too!

Sigh.  It's so hard being sick...
 Waverly showing off her penguin mask.  A couple of times the nasal cannula wasn't delivering enough oxygen, so they put this tiny, cute little mask on her. 
 Waverly had many visitors while we were there.  I didn't get a picture of most of them, but here she is having some snuggle time with her Granddaddy. 

Another penguin mask shot. 


Waverly was able to come home yesterday!  She woke up in the hospital more herself, talkative and alert.  And she did well when they turned her oxygen down to 1 liter, and her respirations were decreased, so they let us go home even though she was still on some oxygen.  
She will continue on oxygen as needed, but we will try to wean her off of it as she tolerates it.  She is also on Augmentin (antibiotic) for her ear infections (both ears!), prednisone, albuterol nebulizer treatments, chest physical therapy, as well as her normal regimen of medicines and therapies.  Her lungs sound much better although are a bit crackly and wheezy still.  

Can you tell she's happy to be home? 

 Here are all her machines set up last night.  What a mess of machines and cords!  (Yes, the o2 sat says 88.  We were adjusting her settings for the night!) 

Monday, March 19, 2012

Sick Baby

Well, we made it to March without any major sickness, so we are super thankful for that!  But, Waverly finally succumbed and caught a virus that my three year old had with a high fever and cough, and her little body just couldn't fight it as well.  On Friday we started noticing her coughing and sneezing, but then Saturday during the day she seemed fine.  By Saturday evening she had started again, and when I checked her o2 sats, they were a little low (in the 80s), so I went ahead and put her on oxygen for the first time at home.  Her sats improved at just 1/2 liter of oxygen.  However, later that evening, she had a big seizure, stopped breathing and turned blue.  It happened as her temperature was about 100.3.  We treated with Motrin.  We went ahead and kept her on oxygen at 1-1.5 liters all throughout the night, and took shifts sitting up with her.  By Sunday morning, she was still feeling poorly.  She had another big seizure where she stopped breathing, so we took her to the doctor who sent her on to the hospital. 
On Saturday night.
On Sunday afternoon, she had another huge seizure here at the hospital, and stopped breathing for a little too long.  She was blue all the way to her feet!  I paged the nurse when it started, and within an instant she had a room full of people working on her!  Thankfully she came around, and we've been careful to keep her on Tylenol/Motrin since so her fever doesn't go up and trigger such awful seizures.  She's still requiring oxygen, although we are trying to wean her off of it now. 
Thankfully all her tests came back ok.  She had a chest x-ray, urine culture, RSV and flu test, and blood work.  All looked ok, except for some cloudiness in her lungs.  She also has an ear infection that we are treating with antibiotics.  She's getting chest physical therapy and nebulizer treatments as well to help her with the mucous and secretions. 

Chest PT and nebulizer treatment.
The doctor wants her off of oxygen before she comes home, which we hope will be in a couple of days at the most. 

Thursday, March 08, 2012

Waverly at 10 months

Sorry for my tardiness in this post!  Life has been crazy the past couple of weeks!  Our little girl is now 10 months old!  She remains a sweet and happy baby most of the time.  I have many more pictures to add that are on the camera but not yet loaded to the computer, but here are a few for the time being.  

While up at UVA for an EEG a couple of weeks ago, her feeding pump broke!  Thankfully, I had a syringe in her bag for such an occasion, and we had been increasing her feeding rate so that we could do a gravity feed if needed.  She handled it beautifully, and although we now still do mostly pump feeds during the day (now that the pump is fixed), it's nice to know we have the gravity feed option. 

 I also forgot her stroller at that appointment, so we improvised and used a wheelchair to put her infant seat on and pushed her all around the hospital in that.  Ghetto, but it worked!

 She is still so smiley especially in the mornings!  She loves to "talk" and coo as well.  She's very proud of all the new noises she can make, and likes to practice them. 

 She also got her second tooth this month, as you can see her showing off in this photo.  Such a big girl!
 A few other random facts:
-She weighs around 18 pounds.
-She mostly sleeps through the night, unless she decides she wants to party.  :)
-She sleeps in her own room.
-She still naps at random times and lengths throughout the day (no set schedule).
-She gets once a month speech therapy (for oral stimulation) and twice a month physical therapy.
-We are looking at various adaptive equipment to order and use in the home as she is starting to outgrow some of her baby items (like the swing, bouncy seat, baby bath tub, infant car seat, etc.).   Once we get everything ordered and in, I'll do a big post about our new "toys" for her.