The past month and a half have been very busy. After receiving good news on Ari's last MRI, it was full speed ahead working on further recovery. Ari continues to have physical therapy and occupational therapy on a regular basis helping him to regain strength, balance, and developmental milestones. He is making good progress overall. He has been walking more in his gait trainer outside, and really loves when we let him walk (or should I say gallop) downhill. He gets a big smile on his face and all but refuses to walk back up the hill afterward. He is really enjoying moving. He's also been standing more at our ottoman and couch. This is a big step as he is more willing to stand with minimal support and play with a toy. Prior to the last couple of weeks, it was just too much to put together for his body. We definitely celebrate continued progress. His strength also continues to progress. He is now pushing himself up to a seated position from many different directions. He's demonstrating much more skill with sitting with no support for longer periods of time and is "falling" with much more skill and grace. He is really doing some good stuff! He's also been scooting...kinda! He has discovered that while laying on his back, he can use his feet to scoot backward. He has become quite skilled at it and is learning how to move himself. We're thankful for that! And, of course he's still rolling everywhere.
Thankfully, Ari's vomiting continues to decrease. There are actually days now when he hasn't thrown up! If you've been following his story from the start, you know this is a HUGE step! Additionally, he has transitioned completely off of TPN and is now only receiving stomach feeds through his G-tube! Again, this is a big deal. In the coming weeks, we will begin to introduce some pureed foods in his G-tube to try to get his body used to more solid foods. With him being off of TPN, he no longer requires weekly labs for the first time in over a year! We celebrate this!
About a week and half ago, we drove to Portland to have Ari's eyes checked. This was his second eye appointment due to some slight crossing of his eyes, another lasting side effect of surgeries and treatment. The doctor has instructed us to begin patching his left eye to give him more opportunities to begin using his right eye more. We're nervous for this new change because Ari really was not a fan of them patching his eye for 1 minute in the clinic. We've been instructed to do this for 2 hours per day. Yikes! If the patching does not prove to be successful at helping to correct his right eye movement, they may have to complete a surgery on the small muscles in his right eye this coming fall.
This past Friday, we met with a local audiologist who gave us Ari's new hearing aids. Again, we are nervous to begin attempting to use them during the day because Ari does not like things in his ears; HOWEVER, we are so thankful to be working on the recovery phase. And, he actually did not seem to mind them in his ears in the clinic but really hated the process of getting them in. This should help Ari hear high-frequency language sounds such as the s, f, and th sounds. As he's able to hear them more and more, he will be able to develop the verbal skills to speak them.
If you've been paying attention to the national allergy counts, you may have noticed one particular city who has been holding the #1 spot for allergies...Eugene, OR. Apparently, 200 is a high allergy count. Lucky us, Eugene has had several days that were well over 700. We've noticed the effect mostly on our little man. Ari's nose has been running more often, his eyes will get red and puffy, and he has been more congested. We're praying allergy counts will go down soon.
Our little guy is also vocalizing more on a consistent basis. We feel he continues to understand language well and is still working to learn how to form words and verbalize them. He continues to LOVE to read books! He is also using his mouth more as he brings more and more toys up to it and is chewing on them. After many, many months of not wanting anything near his mouth, we're thankful for this progress!
On a day-to-day basis, our minutes and hours are filled with intentionally working with Ari to help with physical and cognitive development, helping him to keep his feeds in his stomach, and working on all the previous things mentioned in this post. It's tiring, but we are thankful for the fatigue. The fear that can often creep in is often work to fend off. We want to continue to be real with the circumstance, but also want to not be paralyzed to a point of missing out on the enjoyment of what is today.
We had the honor of speaking at church a couple of weeks ago on our 6-year anniversary about our journey over the last year and half. Our church has been journeying through Luke 6:46-49 where Jesus speaks about the parable of building our foundation on the rock, as opposed to, the ground with no foundation. Jesus reminds us that when the storm comes, which it WILL, our house will still stand throughout trials if built on the foundation. It gave us a great opportunity to look through pictures, reflect about all the events, feelings, and decisions, and to re-experience what God has done in our hearts and lives through this storm-filled journey. It was hard, life-giving, and gave us reason to celebrate. If you're interested at all in listening to part or all of it, you can visit http://www.awakeningeugene.org/sermons and click on the June 7th sermon. Our pastor and friend, Clint McKinnis, gives about a 20-minute sermon prior to us beginning to speak (we start speaking around the 21-minute mark). If you have the time, I would highly recommend listening to the entire sermon!
As always, we want to extend our gratitude toward all of you that continue to express interest in Ari's story and continue to walk with us through prayer, words of encouragement, and sending love our way. We will never quite know how to express our thankfulness with such a limited amount of words in the English language. We have felt more love and care during this season than we really can comprehend. Thank you!
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| Ari taking over the streets in his gait trainer. |
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| This might be one of our favorite pictures. He could probably look at books all day long! |
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| Oh, and by the way, our little man celebrated his 2nd birthday AT HOME this year! |
