What a nice lazy Sunday with the Bun. Except for the time I spent cleaning up the basement. =)

It was so cold today (high of 10 degrees!) which is why we were all content to stay inside.

We started out watching a little Micky Mouse Clubhouse which included some good cuddle time with my girl. There was also a nice virtual family gathering when my mom I video chatted via Skype. Ella’s Great Grandparents were at my moms at the time, so they got a chance to see Ella in action. I wish that we could make the trek to Cali so we could see everyone in person, but we’ll take what we can get for now. Hopefully next year when Ella is (hopefully) off oxygen and her immune system is stronger we’ll be able to go.

Can I be honest with you…I have moments where I wish Ella was just a normal 16 month old. She’d be running around the house, talking, eating, not retching, playing with her toys, and getting into things she shouldn’t. We could take trips, go to public places, and see our friends that have other kids instead of being confined to our home. I could show my kid off at work, and take her to the zoo, and eat ice cream together with her.

These thoughts especially flood through my mind when I’m out and about and see a “normal” 16 month old. It reminds me just how far behind my precious child is. And that’s hard to see.

But…

When I receive an email from a family who just found out that their daughter was diagnosed with CDH, I remember the hope my daughter brings.

When a friend tells me how (trying not to cry here) the first thing she does every day, before anything else, is to pray for Ella, I remember how God has used our sweet child to draw people close to Him.

When an 11 year old girl comments on the blog to let us know that she’s praying for Ella, I see the Kingdom of God being impacted now, and in the future.

When I think back and ponder the events of the last 508+ days, I am overwhelmed by what we’ve gone through, and would be in denial if there wasn’t documented proof of the events. But I’ve also experienced the overwhelming presence of God in ways that I had never previously encountered.

If Ella wasn’t who she was, perfectly formed by God, you would not be reading these words right now. This would be just some other blog with pictures of our kid and comments about how cute she is. But instead, you have traveled with us through the heaviest times of our lives, and prayed us through it, cried along with us, and comforted us with your words and presence.

Ella was no accident, and when I consider all that our Heavenly Father Has done by her, I rejoice in the blessing that she is.

For these reasons, I will be content with where my sweet child is, knowing full well that God is in control and he has her right where he wants her.

Thank you Jesus for blessing us with this incredible girl. Praise you for allowing us the privilege of being her parents. We trust in your plan Lord, and surrender our lives to you. May Ella continue to have an impact for your Kingdom each and every day. In your Holy Name. Amen.

P.S. Happy Birthday (Dec 15th) to Bun’s Mommy! God knew what he was doing when he chose you to be Ella’s mom.

Ella had an “ok” day. Kelly relayed that she seemed more fussy than usual. On a feeding note, that seems to be going well. The increase in food while working toward full bolus feeds has continued strong.

I did not have a great birthday. This morning, our sweet little miniature dachshund passed away unexpectedly. Her 10 year old heart just decided to stop working. And although we don’t spend each day with her anymore, I’m very sad.

Joslin (aka Taco) has spent the last 1.5 – 2 years with my Dad mostly. I was traveling back and forth to LA every week for work (while pregnant) and then we left Colorado to go to Florida for Ella’s birth and hospital stay. During that entire time, Joslin and Manny have kept my Dad company.

Now, my heart is sad for my Dad. He misses Taco a lot already. And Manny, he howls if you separated him from Joslin. Now when my Dad goes to work, Manny is by himself. I’m sure he doesn’t understand where his sister has gone. They are used to snuggling at night together while they protect the house.

I don’t have a picture, but hanging off the fireplace are two stockings: one for Taco and one for Manny. My Mom made the stockings several years back. And Christmas was always one of Taco’s favorite times – she loved ripping open gifts. I was really looking forward to it.

I’m thankful that Taco and Manny came over for Thanksgiving and I spent some good time with her. But my heart is still sad.

Last year, I was in the NICU with Ella and this year, my dog passes away. Prayers for the grief to subside and for better birthdays in future years ahead.

Last night, Ella had a great night of sleep. She only woke up twice which is really good for her.

She had OT and PT today. The OT had a great suggestion for Ella’s retching. She recently read a study that showed that if you grasp and place pressure on the head of the child for a few times in the moment when they would normally retch, it can subside the retching (showed favorable results for 70% of patients in the study). Even though there is a huge margin of error, we are willing to try anything.

So this evening, Josh and I were both trying this new method anytime you could sense that Ella would normally retch. And amazingly, it did seem like it helped her. We’re trying to not be too optimistic, but the initial signs looks good. Anything to reduce the retching is great; it has to be one of the toughest daily things to encounter.

We purchased this Z-Vibe tool that is supposed to help with oral aversion and the signs have been promising after only two sessions. Along with that, the OT has instructed for us to have 3 feeding sessions per day. We’ve opted to use apples since those used to be her favorite. We’re hoping that we can make progress sooner versus later.

Yes, the dog is still on my mind. I found myself waking up throughout the night consumed with sadness. But today was a new day and although I still miss her, I know that it will get easier as the days pass.

Thanks for all the thoughts and prayers. It means a lot to know that there are so many out there supporting us on this journey.

Lamentations 3:25 (NLT)
The Lord is good to those who depend on him,
to those who search for him.

Ella had a great time with Kelly today.

The highlight of the day was apples. The OT advised to have feeding sessions each day (back in Florida, apples were her favorite). So, Kelly got out the jar and started working away. Ella was tolerating the spoon, but Kelly picked up on her lack of enthusiasm, so she switched to using fingers. Ella doesn’t quite have the coordination to use her hands with food, but Kelly placed her fingers in Ella’s mouth…and it worked! Ella responded well, so much that the small jar of apples is nearly gone this evening.

It is so exciting to hear about Ella having a positive experience with food again. I’m sure it won’t be long before she is taking the apples like she used to months ago.

Also, the head trick to prevent retching does seem to be working. That is really cool considering that Ella retches several times each day. It is handy to have a non-invasive trick that seems to be helping. It is rare when something so basic and straight-forward actually works with Ella because she loves to break the rules and be different!

Josh’s company had a Christmas party this evening. It was fun to go downtown and meet many of his co-workers as well as see some of the familiar faces from years past. But before I showed up at the Christmas party, I found it necessary to go and view a puppy.

Yes, I know that I am crazy. It is so quick. We miss Joslin terribly and Manny has spent more time looking for her. But I found a little female, black and tan dachshund that is just too adorable to pass up. So, my Dad is getting a new puppy for Christmas. We will likely be picking her up over the coming days and I will be excited to share her with all of you.

I think I surprised my Dad a little bit with the news. But he also knows that he gave me full permission to go get another dog, sooner versus later. He also made sure to tell me that it must be a little girl. I hope that this new family member will help to distract from the loss of Joslin and that Dad and Manny can have another friend to keep them company. I know that she did a lot for me just when I met her this evening. She was playful and loving…I’m excited.

As I end tonight, I am refreshed and am looking forward to Christmas next week. I’m not ready for the holiday but it is always such a magical time of year. And I’m just so thankful that Ella Renae is in our lives to share it with us.

Ella had another amazing day while the snow fell outside. Kelly reported that she ate a jar and a half of baby food! And this is just after a few days of concentrated effort. Yesterday, Ella would not take the spoon when eating. Today, she tolerated the spoon too!

Along with the feeding of food, Kelly has to spend lots of time doing exercises that the OT gave her to help Ella with her oral aversion. One tool that was kind of pricey, but the OT swore by it, is a tool called a Z-Vibe. The Z-Vibe is a vibrating tool for oral-motor stimulation and sensory input, designed by a speech-language pathologist. The gentle vibrations stimulate the gums, palate, and tongue. It can also be used outside the mouth on the cheeks and lips. We purchased one and Kelly has been using it over the past few days. Again, the whole purpose of the Z-Vibe which has different tips and can vibrate is to help kids overcome oral aversion. I’d say that Ella is getting a decent start.

Wow, I can’t believe it. It is so good to hear about this progress. Eating a jar of baby food each day is more along the lines of what Ella was doing back in Gainesville when she was only 9-10 months old. It just makes me happy.

Speaking of happy, Ella was so smiley this evening. She was vocalizing a lot, kicking and laughing. I just loved it. I was doing my infamous trick of trying to kiss her over and over really fast on her face and neck…she was giggling. Such music to my ears.

I cannot believe that Christmas is next week. Wow. And I have pretty much only purchased one gift so far…a puppy. The little canine is going to be rescued tomorrow evening. I’m really excited to go pick her up and love on her.

I’m going to keep her for a couple of days before handing her over to Grandpa. This way, I can get a sense of how she is doing and what she responds to. Plus, I want to get some puppy love myself!

Ella has PT tomorrow. I’m hoping that she responds better than she did on Tuesday. If I didn’t mention before, the PT sessions have been a bit off schedule while the therapist works through the red tape of being reimbursed from our insurance policy. Because she was not getting paid and the sessions were piling up, she has only been coming once per week (been this way since Thanksgiving; we still get guaranteed one session per week as it is not billed through insurance but through a federal and state funded program). She didn’t come all last week at all, so this week we have 2 sessions. I just hope that the process can be expedited. Ella was on such a good track to do well and now, the progress has been slowed considerably.

I’m looking forward to Friday and the weekend…and hoping that Ella has another amazing day of progress with Kelly.

But too tired to write. We’ll fill ya’ll in tomorrow. Enjoy the pics of the Bun for now.

Kelly went home to Colorado Springs to be with her family so it was a nice, lazy day with just the Bun and the dogs. Yes, we have a new little one that has joined our family here in Colorado: a mini female doxie. She does not officially have a name, however I’m sure a final decision will be made soon.

Manny was so excited to see another dog last night. He was in a bit of shock. It is sad though because you can tell that he is confused and still looking for Joslin. You can tell that he still misses her.

Last night, the puppy did incredibly well and slept solid for the night. Actually, Manny was the one that kept waking us up! He gets excited with the cats and kept climbing in and out of the covers to check out the scene. Needless to say, we were both a bit tired today.

As expected, the puppy had a couple of accidents today while we had her confined in our kitchen area. But then, we also had a few successes on the potty training pads too. It was exciting to see her make an association after just a few times and successfully go on the potty training pads! Of course, we would prefer to take her outside on the grass, but it is covered with snow and freezing! The potty training pads we purchased actually have a grass scent and they recommend slowly moving the pads closer and closer to the outside door.

At times throughout today, Manny seemed a bit lethargic. He would go off into the other room and cuddle up on the couch to go to sleep. He was not in a social mood and seemed bummed. In these moments, it was hard not to get a bit sad about Joslin.

Several times, the puppy would want to play and Manny would ignore her. Thankfully, a few times he decided he was up for it and would run around and play. The new puppy has a great temperament and a great disposition; she is playful, outgoing, sweet, and cuddly. You can tell that her and Manny will end up being good buddies.

I think my Dad is really going to bond with her too. Tomorrow, he gets to meet her for the first time. We have an appointment at the vet to get her a second round of shots.

Ella’s day was low key. With all the extra activity with the dogs, the camera was not focused on her. By the end of the night, we realized that we only grabbed the camera when she was snoozing!

We’re definitely glad that it is just Saturday and that we have another day of rest before returning to work.

Thanks for all the support and prayers.

Ella slept well through the night. She only woke up a couple times which is always a blessing. She had a good day overall too.

Tina and I spent the morning hanging out with Ella and keeping the dogs reined in. We enjoyed playing with Ella and the dogs. This afternoon, Tina took the puppy to the vet for her shots, and then dropped the dogs off at Grandpa’s house.

We also had an unexpected visitor today: Tina’s Aunt Char had a layover in Denver, due to a missed flight, so she’s spending the night here so she can catch her 6am flight.

Kelly came home today from visiting family and we all enjoyed each others company. We even played a round of cards (Phase 10) together.

Looking forward to the short work week and celebrating the birth of our Savior with our sweet child at home.

Praise God for where He has us.

P.S. Please continue to pray for Olivia and her family.

Apparently, the highlight of the day was Ella rolling from her belly to her back! That is a first and an exciting step of progress. She can’t roll from her back to her belly quite yet, but it is exciting that she did a version of rolling over. When she did it, Kelly clapped and made a big fuss which made her laugh.

Yes, on the way home from work I tried to get some Christmas shopping done. I am guilty of not having any gifts ready….except for my Dad’s puppy! Speaking of the puppy, my Dad decided to name her Maggie.

Maggie and Manny will be coming over for Christmas which should be fun. I’m still holding out hope that Manny will not take too much longer to snap back into his old-self. He is lethargic and anti-social. Right now, he’s not to into the puppy either; he snarls at her when she comes close and wants to play. I know this is a normal response when a puppy is introduced, but I think he is also still trying to figure out what happened to Joslin. I really think he misses her.

I can’t believe that Christmas is just a few days away. Grandma West is scheduled to arrive tomorrow, but we will see if the weather cooperates. Hopefully, she will not have any major issues. We’re excited to see her and spend the holiday together.

Ella had a good day with occupational therapy. She is still taking food, albeit a bit slower, from our fingers and tolerating the spoon. This past week (since OT session last week), Ella worked her way through 6 jars of baby food. Not too shabby.

The OT asked us to keep everything up (including the z-vibe on her cheeks and mouth area) and to try introducing orange veggies, like sweet potatoes. We’ll try it and see how the Bun responds.

Also, we will be trying to increase the density of her food tomorrow from 24 k/cal to 26 k/cal. Since I have the day off from work and will be hanging out with her all day, I figured it was a good day to try it. Thankfully, she has progressed to bolus feeds without issue. It has taken us 3+ months since surgery for her to work back up to bolus feeds.

One of Ella’s CDH buddies recently graduated from using her g-tube for the past 2 years. I cannot even fathom the day when that will be the case. Her friend is now device free.

Kelly said that Ella had a great day overall. When I left for work this morning, Ella was happily playing on her mat while Kelly was signing, talking and playing with Ella. She seemed to be having a good time.

Manny and Maggie did a little bit better tolerating each other today. That made Grandpa happy! I’m excited to see them and hang out for Christmas in a couple of days.

Grandma West arrived here safely today. Thank goodness there were not any weather-related delays. No snow in So Cal and none in Denver today, so it went smoothly.

When Grandma arrived, they went upstairs to play with Ella in her room…and Daddy could not resist tickling the Bun.

Looking forward to celebrating our Savior’s birth on Thursday with family, food and gifts. We have just so much to be thankful for this time of year.

Luke 1:39-45 (NLT)
A few days later Mary hurried to the hill country of Judea, to the town where Zechariah lived. She entered the house and greeted Elizabeth. At the sound of Mary’s greeting, Elizabeth’s child leaped within her, and Elizabeth was filled with the Holy Spirit.

Elizabeth gave a glad cry and exclaimed to Mary, “God has blessed you above all women, and your child is blessed. Why am I so honored, that the mother of my Lord should visit me? When I heard your greeting, the baby in my womb jumped for joy. You are blessed because you believed that the Lord would do what he said.”