TWO YEARS OLD!

A birthday we weren't sure we would see with Waverly-TWO! We are just so amazed at God's goodness to us to allow us this sweet and precious time with this girl. Enjoy just a few pictures and some information about her over the past few months...

We think she is entering her Terrible Twos. She will often set off her pulse ox alarm or pull some other attention-grabbing trick (like sneezing so hard she screeches beforehand) when we are focused on other things or doing something that is about someone else. Or she will just have a seizure. It's happened enough times now that we're not sure that we can continue to call it coincidence!

This is a typical Miller-Dieker face. How cute are her sweet cheeks, her little nose, those lips?

We are so blessed to still be able to see her smile. Although it's not very consistent, and we may go weeks without one, she will flash us these huge grins and we just go crazy over them every time. We never tire of seeing her smile!

This girl is loved by her siblings. They love to hold her, play with her, talk to her, kiss and hug her, and even tattle on her sometimes!

 Did I mention how much I love this face??

Waverly has gotten quite spoiled lately to her mommy. She loves to be held and snuggled, and will often fuss if she is tired and needs to go to sleep and wants to be held to do so. But several times recently she has been quite fussy, and whoever has been holding her has not been able to comfort her. As soon as I picked her up in those times, she has settled right now and gone to sleep. I love it and will take it any day! She also gets rocked to sleep most nights, and I'm ok with that "habit" as well! 

 She's enjoyed some outside time and sunshine some, although until the pollen gets a little better, we've had to limit that time since she seems to get sick often afterwards. But you can see how big she's getting here in this picture.

 Waverly has experienced a lot of sickness and setbacks these past 6 months or so. She's had pneumonia several times, several hospital stays, and lots of medications. We try to keep her at home as much as we can, which means a lot of extra treatments and work. But it's worth it for her to be home with us and our family to be together. She's getting a nebulizer treatment here.

 This is her cough assist machine. It helps to mimic a cough for her, and gets the mucous up out of the lungs. She HATES it, but it's good to get the big plugs of mucous up, especially when she's got pneumonia or is having desaturations (low oxygen levels).

 Of course, with all the sickness comes lots of suctioning as well. She's holding her suction machine close.

 She loves to play on the iPad with her big brother and sister and watch things on it while they play. They will sometimes take her hand and help her touch the screen to play the games. I love seeing them interact with her and involve her.

A few stats about Waverly these days:
-She is about 32 inches long, which is in the 25th percentile.
-She weighs about 22.5 pounds, which is no longer on the percentile chart.
-She takes around 15 medications (including supplements) each day (most of them multiple times a day). Yes, that's a lot.
-She still eats every 3 hours during the day (eating takes about an hour each time) for 4 feedings each day, and continuously overnight, all through her gtube.
-She usually goes to bed around 8:30 and gets up for the day around 7:30. Although she is not necessarily sleeping that whole time. She often wakes up during the night or early morning, sometimes more than others. Other nights she sleeps all night just fine. We never know!
-She uses her bipap for at least a few hours most days, and sometimes sleeps with it all night (when she tolerates it).
-She is on oxygen still all day, anywhere from 1/2 liter to 3 liters depending on how she's feeling. Occasionally she will tolerate being off of it, and we try that as much as she will tolerate it.
-She is still cathed every night to empty her bladder, and gets her blood sugar checked every night as well.
-Her seizures are better, but we still see them more often than we'd like. When she's sick she usually seizes several times a day. When she's healthy and doing really well, she may go several days without any.
-She had 4 hospital stays totaling 13 days and several ER visits this year (and too many doctor appointments to count!).

Waverly, we are so blessed by your sweet spirit, by your strength. You smile lights up those who are blessed enough to experience it, and your eyes are so deep with a knowledge that goes beyond my ability to know and understand. You, little girl, share so much by not even saying a word. You love unconditionally, you give sacrificially, and you remind us of what's important in life, of who we are, and of Who God is. You speak of His goodness and of His grace with your life. Our hearts break when we see you hurting, struggling to get the next breath, seizing and out of control. We pray that God spares you of some of that pain, and wish that we could take it for you. You teach us to long for heaven with everything that is in us, for a time when you will be perfect and happy and whole, untouched by the fallen nature of this world. Until that day, we pray that your life shouts of His goodness and glory to all who hear of you, that God would be glorified, worshiped, and praised. We love you baby girl!

For related posts see:
Birth Day Pictures
The Beginning 
Diagnosis
One Year Old! 
One Hour Conference Room Meeting
I Don't Want It To Be Real

Pneumonia

This post was from Saturday, May 4th.

Waverly ended up at the ER yesterday evening after struggling to breathe again yesterday afternoon. Her tummy was a little distended and her sats were all over the place, and she was requiring extra oxygen. They did a chest and abdominal X-ray and determined she has pneumonia again in her lower left lobe this time. They started her on antibiotics and her sats stabilized, so they gave us the choice to stay for the night (they had a room ready for her) or to take her home. Since she was doing better we opted to come back home. She did great overnight and we even got some smiles today. She is quite the little stinker! Please pray for healing for her lungs as she battles this once again.

Sick Again

Waverly woke up very early Tuesday morning a very sick girl. Her monitor went off around 3:00a.m. and no amount of oxygen via her nasal cannula would get her sats back up. So we put her on the bipap. She was on 8 liters of oxygen through her bipap (the max we can do here at home), and her o2 sats were in the low to mid 80s. It was a very scary couple of hours for us, as we debated what to do and what the consequences of our actions would be. We knew that if we took her to the hospital, she would likely be intubated and placed on a ventilator. Thankfully, after we administered some early morning breathing treatments, her saturations came back up enough that we felt like she could stay home a little longer. Later that morning, around 8:00, her fever started. Once again, that thankfully came down with treatment (sometimes she doesn't respond to treatment for a fever).

In those early morning hours holding her and rocking her and seeing her struggle for air, I realized that even now, just a week away from her birthday, she still may not make it to two years old. Things can turn around so quickly for children like her, and in one instant she can go from seeming pretty stable and healthy (for her), to very very sick. It was the most scared I've been for her in a long time.

We are grateful that she had about a month in between these last respiratory illnesses, and are hopeful that if she can weather this pollen, she will be more stable for a while.