6 Months

6 Months, 183 Days, 22 Days of school, 2 surgeries, 2,250+Miles driven to medical appointments and an infinite amount of smiles and giggles!

It has been 6 Months since I went to China and had Ari placed in my arms.

6 Months …an eye blink compared to a lifetime.

He has been doing so well.

He is liking school and, according to his teacher, has a little girlfriend. She stays by his side all day (often times even when on the playground), picks up toys he drops and he will reach out to hold her hand. He is a heartbreaker for sure!

We are heading back to Dallas at the end of the week for our follow up. I expect “he looks good” from all surgeons .. so we’ll see. 🙂

He continues to improve with his head control, self-feeding and playing with toys. He seems to like almost every food placed in front of him and is doing so well.

We went to our first “First Friday” on the square. He had his first ever ice cream cone and loved it!! 

I am so blessed by these past 6 months and I look forward to a lifetime more! I can’t wait to see how much Ari gains!  I love this sweet little boy, he sure has stolen my heart!!

First Week of School

Well, Ari had a great first week of  preschool! 

The first 2 nights he decided that he didn’t really need to sleep the night before school – but he eventually started sleeping better as the week progressed.

He has gotten some different seats and equipment at school that was needed. 

They are still figuring out his therapy schedule – but they’re getting there. The kids in his class seem to really love him. The second day I dropped him off a little boy came running up to him saying, “Ari, I missed you all night!!” … super adorable!! 

We started working on a communication app last night .. he rocked it!! We will be hitting this hard so he can start telling us what he wants. ​

The next big thing I have to figure out is how to start picking him up from school (currently I have been working and my sister has been getting him). Auntie Meg goes home at the end of the month and they don’t have a bus for him to ride .. no spots :(. If anyone local knows a reliable college age(ish) kiddo who would want to earn a little money by picking him up from school, just let me know!! 

I’m glad to have him home this weekend! He is happy and playing and I’m sure he will be excited to go to school on Monday! 

5 Months

5 months … that is just crazy talk!!

This past month has been a big one!

We had pictures done before surgery to capture his sweet and adorable face!


We survived a weekend without A/C. IMG_0885.jpgIMG_0870.jpg

Then, he had surgery.

IMG_0919.jpgIMG_1040 2.jpgIMG_1023.jpgIMG_0969.jpg


And tomorrow, this sweet little boy starts preschool!!



Don’t ask me where the time has gone, because I have NO idea!! Before I know it this year will be over and he will be going to Kindergarten!!

I’m excited for him to start school. It will be a new adventure!!


Ari has done so well with recovery from this surgery!! I shouldn’t be surprised, but yet he never ceases to amaze me!! 
He has only needed Tylenol once in the last 2 days and the swelling is continuing to decrease. The top of his head continues to display significant swelling (if you touch the top, you cannot feel bone).  He is starting to move his head more and is able to hold it up almost as long as he could prior to surgery – and I expect this time to increase as he regains his strength. The hope is that he will gain head control and then, hopefully, sitting balance! 

A huge shout out to my Mom (Bubbles) … she went to Dallas with us for surgery and then came back home with us for the past week … it was so great to have her here. It really makes me miss being so close so they can see him more!! (Picture from his birthday party)

Post-Op Day 2

Well, the original plan was for discharge today, but Ari doesn’t like to play by the rules! 

Last night he woke up several times, but was content and even spent some time “talking” around 1:00am. I was happy to hear this because I hadn’t heard a peep out of him (other than crying) since before the surgery.  I was really hoping that his overnight awesomeness would spread into today, but it just wasn’t meant to be.

We woke up around 7:30 and I ordered his breakfast (it has been taking ~ a hour for food to come) and I made some instant oatmeal My mom had brought to hold him over. The sweet little boy was starving!! He ate the entire bowl of oatmeal and fell asleep. From a deep sleep he began retching- but nothing came out. It was just downhill from there. 

He refused to eat anything from the breakfast tray I had ordered and refused to drink anything from his cup. We skipped lunch because he was so agitated even with IV Tylenol on board, he was given some Ativan to take the edge off until he could have his Toradol (which was the first time he needed that). He was very restless all day, struggling with gas pain. He was able to eat a little vanilla pudding and a few bites of banana.

For dinner I got him some chicken noodle soup but he ate very little. He ate a few bites of his leftover tuna fish, but he was just not in the mood for food. 

He was able to sit in my lap for a few hours today – but I feel bad moving him because he is in such pain. He did fall asleep in my arms and it was good for him to have a position change, but it is hard to handle him and his head when it is just so swollen all over. 

The swelling today has been rough. His right eye has swollen shut and the left eye is just a little sliver. I really hope we have hit the peak of the swelling … even his ears are swollen and it has to just be so uncomfortable!! 

We are staying the night tonight, not too sure what the plan is for the rest of the weekend. His craniofacial surgeon wants to take it day by day to see how he does. I’m so happy that they are so open to how the family feels and want us to be comfortable going home. 

Praying that tomorrow is easier, both pain and swelling wise! 

Post-Op Day 1

Last night went ok – Ari was sedated for the most part, but had several instances of intense breakthrough pain. My number one goal was to keep him comfortable and, for the most part, that was achieved. 

He ate 2 bites of oatmeal around 7:30 and promptly threw them back up. He was given some IV Zofran and he then ate some more oatmeal, some scrambled eggs and a few bites of banana & banana muffin. He stayed awake for most of the morning, looking around the room and watching his iPad. He was able to sit in my lap for cuddles for a few hours and he just snuggled right in.

For lunch he ate a little bit of pasta with marinara and broccoli. He also ate several bites of chocolate cake. He was so funny because when I showed him the chocolate cake he spit his paci out so fast!!! The boy loves his chocolate cake!!

Around 2:30, we were moved out of the PICU to the floor. He continues to be fairly content unless moved. His swelling continues to increase and will likely come to its peak tonight or tomorrow.

For dinner, he ate a few bites of tuna fish salad and some more chocolate cake. He hasn’t drank too much, so the IV has stayed to ensure he stays hydrated. 

The plan, as of now, is to be getting discharged tomorrow. We will stay in Dallas until Sunday just in case something happens and we need to get back to our surgeons quick. 

Surgery Day

Well, the day finally came where I again had to put full trust and faith in Ari’s absolutely amazing team of doctors. 

I couldn’t sleep last night, went to bed around midnight and woke up at 2:30. Just too many thoughts running through my head. Ari slept great and didn’t wake up until I woke him at 5:30 so he could drink some Boost before his milk cut-of time. He drank an entire juice box size in less than 15 mins – I gave him a second one, but not much of it was consumed before his 6:30 cutoff time. He did drink some water before his 9:30 off  time, so I felt fairly confident that he could make it until 12:30 without becoming upset due to wanting food.

We left the hotel at 9:40 and got to the hospital right at 10:00. He was such a good boy waiting for his surgery time. He watched some Bubble Guppies, played with an awesome light up and spinning toy from ChildLife and snuggled. He fell asleep in my arms and was asleep as they rolled him into the OR. 

It was a long 4 hours … We got some lunch, I got some work done that I was unable to do over the weekend (not having AC really keeps you from doing too much!). I caught a tiny nap and just sat around watching the kiddos who were waiting for their siblings surgeries to be done. 

Finally, around 4:30, the called to say they were done. They said he had very little blood loss and were able to reuse his blood .. I didn’t even know that was a possibility. So, they keep a pan under his head to collect blood he looses, send it through a machine to clean it, and then give it back to him in his IV … How cool is that?!?

So far, so good. He looks good and had only gotten upset twice.. The first time the nurse immediately gave him some IV Tylenol and he calmed fairly easily the second time. His light up bunny is helping him calm down and hopefully he will sleep some tonight.

Thank you to everyone who has called, texted, emailed and Facebooked us – your love, prayers and support mean the world!!

Here is a pre-op/post-op comparison – but it may be different here in a few weeks as he already has some swelling. 

Hopefully tomorrow will bring less swelling than I expect and we’ll be able to get rid of the catheter and some lines.