Home again!

Thank you all for praying - Kaleb was discharged on Wednesday afternoon. River's face when he arrived home sums up how we all felt about it:

Even though Kaleb ended up in the ER at the end, Todd and I were both really encouraged that he was strong enough to be able to get through RSV so well. He definitely still has a lot of junk in his left lung that we're working on trying to clear out (through his breathing regimen) and his oxygen levels are a bit dicey whenever he's tired, but he's almost back to normal otherwise and it's only been a few days since he's gotten over his RSV. We thank God for that! We can tell he’s getting bigger and stronger in general.

Breathing

The morning of discharge I was able to sit down with one of the head pulmonologists to try to get a better grasp of Kaleb's breathing situation. Here were my takeaways:

• Kaleb has a number of things working against him breathing efficiently (restrictive lung disease, low muscle tone throughout his body - related to dandy walker - and developmental setbacks due to his cardiac history)

• Because of these factors (and additional factors they are still trying to diagnose) his pulmonary reserve is very low. He's basically living life "on the edge of a cliff" and any distress to his respiratory system sends him over the edge.

• Our most effective plan of action right now is to continue giving him his breathing treatments (nebulizer and chest PT) three times a day while also maintaining a healthy oxygen level through CPAP or supplemental oxygen.

• We have to keep Kaleb healthy until October 29 when he has his scheduled CT scan so that they are able to more effectively diagnose his lung condition.

During our conversation I asked her more about his low muscle tone and if this would be something he'd struggle with long-term. She said "We're terrible at predicting things here. Kids often surprise us. But I would think this is something that he'll deal with for the rest of his life."

The Big Picture

I haven't given much thought to the future, but this conversation definitely sat heavy on my heart this week. We truly don't know what the future holds. And Kaleb truly is doing SO well compared to where he could be. I find myself wishing an easier life for him...and yet, do I? Some of the most stunning displays of God's grace I've witnessed have been people whom He has sustained through long-term disability and suffering. They seem to be cut from a different cloth. There's a beautiful freshness to the refined and simple way they view life and God. I pray Kaleb would grow to have that heavenly mindset no matter what his struggles look like in the future.

In the short-term, we continue with all of his appointments to try to lessen his load in future years (taking advantage of this time while we're in Boston and able to receive such excellent care from a team who communicates so well with one another). Recently, I made a list of all the departments Kaleb is being seen by at Boston Children's Hospital:

1. Cardiology

2. Pulmonology

3. Neurology

4. Urology

5. Nephrology

6. Cardiac Nutrition

7. Otorhinolaryngology

8. Speech Language Pathology

9. Gastroenterology

10. Orthopedics

11. Plastic surgery

12. Physical therapy

Some of these are more significant than others, but they all are areas that Kaleb needs help, and they all mean appointments and phone calls and time.

And yet...the future is bright in the hands of our good and wise God! Kaleb turns 1 year old this week, on October 3. Amazing! God has been unspeakably gracious in sparing the life of our son and giving us a truly abundant life with him. We trust and pray that He has His saving hand on Kaleb's life. Meanwhile we know He is fashioning Christ in us through this intense season and He will continue His good work for as long as we sojourn on this earth. Every setback, every sickness, every appointment, every tantrum, every step forward, every step back, every sleepless night, every conversation -- He's working it all for our good. What a transformative truth! It turns every detail of our lives into an experience of His grace. We pray you are able to enjoy the goodness of this promise today in your own life!

Please Pray For:

• Kaleb (and us) to remain sickness free until his CT scan on October 29

• Kaleb to improve in oral feeding

• The salvation of our children

• Perseverance in parenting and life in general

• We just recently met a family at the park who seemed very open to getting together. Pray for opportunities for us to develop a relationship with Neema and Britt.