Life with a 4 year old…

Hello Friends,

It feels like ages ago that we celebrated Amos’ birthday with family and friends. What a time of joyful celebration! We are incredibly grateful to everyone who rejoiced with us in the precious gift of our son Amos. We were reminded at many moments of the great love and care the Lord has shown to Amos and our family over this past year. Amos has, as Will said in the birthday post, come so very far and we are thankful that we get to celebrate his life and enjoy him as part of our family. He is such an amazing little man who brings us so much joy! Please join us in praying that this year of his life is healthy and normal in all the ways that the last year was not.

Focusing on Vision

Life with our little four year old hasn’t skipped a beat. We are still occupied with rehab therapy visits of all kinds. We’ve recently added vision therapy with Dr. Rakov and it’s going well. Dr. Rakov has been a real blessing to us as she brings knowledge and experience to the table as well as an amazing desire to work closely with Amos’s neuro-ophthalmologist. Between the two of them, we feel that Amos is getting such comprehensive care and we are so thankful. In case we haven’t mentioned this before, Amos’ right eye seems to have over-corrected from being stuck in the inside corner of his eye to now drifting outwards. This is rare but not difficult to address, it seems. As of now, the plan has been to continue trying to work his right eye muscles to bring the eye into alignment. It’s looking like exercises alone won’t do the trick entirely, so we expect to tweak the eye with surgery within the next month. This entails the same procedure as before to go in and ever-so-slightly loosen the muscles that were tightened.

Once he gets better range of motion in his eyes, we hope to see better alignment that will allow for his eyes to work together well. Until then, Amos wears “glasses” for 6 hours a day without complaint. These obscure the vision of his good eye to try to get the weaker one to get moving 🙂 Please pray for continued healing and renewal of his eye muscles as we follow the best course of action. We are encouraged by his progress and hopeful that both eyes can be centered once again. Thankfully, his vision is very good otherwise.

Getting Exercise

In other news, Amos continues to excel in his overall physical rehab. Exercise is still one of our biggest goals and struggles. It’s not so much that Amos resists exercise but that we  don’t always have the time or energy ourselves to make exercise fun and a natural part of his day. We spend a lot of time in the car and in doctors offices! I’ve recently started leaving the stroller behind unless I absolutely need it and that seems to be helping (except for when both boys melt down at the same time. I simply cannot carry both of them at once anymore!!).

Routine MRI on Tuesday!

Looking ahead, Amos has another routine MRI on the 31st of this month. This will be a scan of his whole head and spinal cord, and is the main feature of Amos’s follow-up care. So far he has had two MRIs since he finished chemotherapy in December, and the results have been clear. He will continue to have regular MRI scans, in decreasing frequency over time, for the indefinite future.

Obviously we are praying that this scan will show that Amos’s brain and spine are completely cancer free. Please join us in praying for this and for us as it’s always a bit hard to face a scan like this. We are all too familiar with how scans change lives fast.

Swallowing and Trach

The day after the MRI, June 1st, Amos has another swallow study. He had one of these in February that showed he has some liquids going down “the wrong tube.” We are excited to see what this shows as it seems like Amos’s swallow has gotten stronger. If the swallow study shows good things, we can move to repeating the sleep study to see if Amos is ready to have the trach removed. Please pray for success in these important milestones in his recovery!

Visa Matters

Lastly, we haven’t heard yet about our visa status. This is quite disappointing and maddening for many reasons. At the very least, we need to know whether or not our visas will be retained or whether or not we will need to reapply at the end of this summer.  As things stand right now, we are simply stuck in limbo. So please pray for action from the UK Home Office. We would love for our visas to remain valid but even a cancellation at this point would be better than no news at all.

In the meantime, we are thankful for all the ways that the Lord is caring for us, through family, friends, the body of Christ, and the amazing medical team that continues to surround Amos and support him in profound ways. Even though there are so many things “out of place” in our life right now, we find it easy to be reminded of how blessed we are. Thanks to you all for your love and support!

In Christ,

Kelli, Will, Amos, and Lukey

 

 

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4 thoughts on “Life with a 4 year old…

  1. Dear Kelli, Will, Amos, and Lucas,

    What a wonderful birthday celebration, and with such a good bunch of people (and lovely weather, to boot).

    We hope and trust that these next tests (swallow, MRI, vision) go well, and that you will hear from the UK. We are so thankful that you are in such good human hands, and even more thankful that you all are in the hands of Jesus and of his Father. Ain’t nothing and nobody gonna get you out of those hands nohow. Not now, not never, not for ever and ever and ever. It seemed like a good time to remember that.

    Much love from us all,

    fred

    Like

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