14(ish) months.
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The Gurbal Fam
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The Gurbal Fam
Since our last update a few months ago, John turned 1 and things have started to fall into place. It feels like a weight has been lifted and our prayers are still being answered.
We held our breath for months, hoping that turning one and switching to real food as a primary source of nutrition would be easier for him. We are extra thankful that that has been the case, and our fear of him having an oral aversion was successfully avoided.
His severe nasal deformity still exists and is still concerning, however, he has so done so well with feeding and we still haven’t had to use his G-tube since before Christmas. He is maintaining his growth and at this rate can possibly remove the G tube in a few months!! we were also able to wean the thickness of John’s milk, something we’ve been having to do since he was born. This was a limiting factor for him and made drinking bottles a lot more difficult. Once we switched to food and his fluid demands decreased, he finally got the hang of a new cup and we’ve been able to stop thickening all together!!! 🙌🏼🙌🏼
He has been out of the hospital since September and we are finally able to enjoy a life AT HOME with two very energetic, messy children- which is exactly how we prayed these days would be. John is officially caught up on all of his milestones and at this point he no longer has any developmental concerns. We were told that learning disabilities are very common with his type of disorder, but at this point we are seeing no evidence of that in John. The fear of him being deaf also seems false, as he continues to pass his hearing screens. He is signed up to start school in June and we’re looking forward to a summer of fun!
John is headed back to surgery in April- it will be a multi-step surgery with 3 different doctors.
His circumcision was very poorly done and has to be redone by urology 🙄 (poor guy can’t catch a break!) since he will be under anesthesia, his ENT doctor wants to analyze his upper and lower airways again and dilate his nose to help him possibly breathe better. His plastic surgeon is going to try to be present to also investigate what’s going on and determine if the collapse in his nose is something that can be surgically fixed by the craniofacial team.
This surgery SHOULD BE outpatient and we hope he won’t have to stay in the hospital afterwards.
In the meantime, we are enjoying this time together as a family and are praying for longer, warmer days with less sickness!
John has shown incredible strength in his 13 months, and has brought our family together in a very unique way. We are so thankful for our people and those that continue to pour into us and John in a variety of ways.
If you’re still reading, know the Gurbals are so thankful to have support from you and we truly wouldn’t have made it this far without all the help. 🫶🏼
We held our breath for months, hoping that turning one and switching to real food as a primary source of nutrition would be easier for him. We are extra thankful that that has been the case, and our fear of him having an oral aversion was successfully avoided.
His severe nasal deformity still exists and is still concerning, however, he has so done so well with feeding and we still haven’t had to use his G-tube since before Christmas. He is maintaining his growth and at this rate can possibly remove the G tube in a few months!! we were also able to wean the thickness of John’s milk, something we’ve been having to do since he was born. This was a limiting factor for him and made drinking bottles a lot more difficult. Once we switched to food and his fluid demands decreased, he finally got the hang of a new cup and we’ve been able to stop thickening all together!!! 🙌🏼🙌🏼
He has been out of the hospital since September and we are finally able to enjoy a life AT HOME with two very energetic, messy children- which is exactly how we prayed these days would be. John is officially caught up on all of his milestones and at this point he no longer has any developmental concerns. We were told that learning disabilities are very common with his type of disorder, but at this point we are seeing no evidence of that in John. The fear of him being deaf also seems false, as he continues to pass his hearing screens. He is signed up to start school in June and we’re looking forward to a summer of fun!
John is headed back to surgery in April- it will be a multi-step surgery with 3 different doctors.
His circumcision was very poorly done and has to be redone by urology 🙄 (poor guy can’t catch a break!) since he will be under anesthesia, his ENT doctor wants to analyze his upper and lower airways again and dilate his nose to help him possibly breathe better. His plastic surgeon is going to try to be present to also investigate what’s going on and determine if the collapse in his nose is something that can be surgically fixed by the craniofacial team.
This surgery SHOULD BE outpatient and we hope he won’t have to stay in the hospital afterwards.
In the meantime, we are enjoying this time together as a family and are praying for longer, warmer days with less sickness!
John has shown incredible strength in his 13 months, and has brought our family together in a very unique way. We are so thankful for our people and those that continue to pour into us and John in a variety of ways.
If you’re still reading, know the Gurbals are so thankful to have support from you and we truly wouldn’t have made it this far without all the help. 🫶🏼
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Virginia Coleman