On September 15, 2016 the lives of Kevin and Mandy Perry were changed forever. Kaleb Scott Perry was born at Standford Medical Hospital. He is a miracle from God. When Mandy was first pregnant with Kaleb they noticed health concerns right away involving his bladder. As the months went on, they were discovering new health concerns regarding his kidneys and lungs. As soon as he was born, he was rushed to the NICU where he was being examined and tested for his lungs, kidneys, and bladder. Kaleb has been diagnosed with Prune Belly and has already had surgery for digestive issues. Kevin and Mandy will be staying at Stanford for a very long amount of time and as family members we are asking for your prayers above all else and also financial support. Dialysis may or may not be in the future for Kaleb but we pray for continued healing and that God will bring peace and comfort over Kevin and Mandy. Thank you and God Bless.
Kaleb is one year old now! What a miracle that is! For those that don’t know, kaleb was born with prune belly syndrome, which means he lacks abdominal muscles. Prune belly syndrome comes along with many other health issues, including kidney disease/failure. Kaleb has a big year ahead of him. Starting at the end of October Kaleb will start the first of many surgeries, all of which will be done in Dallas, one possibly in Colorado. We will be traveling out of state for these surgeries because these drs have devoted their time to become like specialists in prune belly syndrome, and they know very well how to treat kids like Kaleb. They are the best of the best, and that is very important to us because we want Kaleb to get the very best possible results in the end. The surgeries include: bringing down his testicles, creating a functioning anus (he does not have an anus), urinary tract reconstruction, muscle transposition surgery (placing one quad muscle from each of his legs in his tummy area to create abdominal muscles), and a tummy tuck. Some of these surgeries have multiple phases and require healing and time in between, so we will be making many trips back and forth out of state. We will be driving because we found that Kaleb is not able to keep his oxygen up in safe levels when he flies. So, this means many hotel stays, food on the go, and gas along the way. All these things add up fast! The dr in Colorado that would fix Kaleb’s bottom area is the creator of this surgery technique and has performed it thousands of times. Kaleb’s case is quite difficult so it’s very important that we seek the care of this dr. The dr that does the surgery to place muscles in Kaleb’s abdominal area to provide stomach muscles is the only dr in the country that does this surgery. He is located in Dallas. We are very nervous about all Kaleb has to go through this year, but we know that it will give him such an improved quality of life. Please be praying for safety and strength for Kaleb, for quick and easy healing and recovery, and wisdom for the drs and medical teams that will be caring for Kaleb. We appreciate all of you and your prayers!
For the past 4 weeks Kaleb has been in the ICU at Valley Children's for having RSV. Because of his prune belly syndrome, the virus attacked his lungs and he wasn't able to cough it out of there. He became very sick within days and had to have a breathing tube placed in order to save his life. At one point he was breathing 100 breaths per minute and his heart rate was 200. After weeks of back and forth and seeing no progress, we began to feel hopeless and thought we would lose Kaleb on several occasions, but we tried to always hold tight to our Savior and great Healer. Finally, one day, Kaleb started to show progress and gets to be discharged for home! Praise the Lord that we get to be a family of 4 again. Kaleb has many other things to face in the months ahead. We will be traveling to Stanford for a consultation for surgery to correct his digestive system and get rid of his colostomy. There are many other things they will be doing during this surgery that involve his urinary tract and bladder. We are excited for these fixes for Kaleb, but also not looking forward to more hospital stays. We continue to monitor his kidney function, praying daily for the Lord's continued healing and stability. We will continue to hold tight to God and pray Kaleb through each day as we face many challenges but also many blessings. We are beyond blessed by Kaleb and his joy. He will never let you look at him without giving you a smile that is so contagious! Thank you for all your love, support, and prayers during this time.
Thank you for all your prayers through all this. We have some updates for you to pray for today. I finally got to see Kaleb last night at 1am, but no holding him. I got to hold him this morning at 9am for the first time. Kaleb's lungs are on the small side but does not need any help to breathe at all, he's doing it all on his own. This morning they found that Kaleb's rectum/anus is closed off and his is not able to have a bowel movement, which is common with prune belly. So no eating for him. He has a tube down his throat to suck everything out of his tummy, which makes him gag and irritated. He's on IV fluids right now since he can't eat. The surgeons just came and talked to Kevin. Kaleb will have a procedure this afternoon to make a whole next to his umbilical cord to his intestines so that his poop can come out through there so he can start eating in the next couple of days. During that procedure the urologist will also place another hole in his tummy to his bladder to have his bladder drain that way. They will also remove the 2 shunts that are in Kaleb and go in with a camera to see what's going on inside. The procedure requires him to be under anesthesia so pray for that, and will take about 3.5 hours total. They won't be able to fix the actual rectal problem until he's 4-6 months old, so until then he will just have that hole in his tummy to have bowel movements through there. Surgery will be around 1-2pm this afternoon. They continue to take blood tests to check levels for his kidney output and to see how well they are functioning for him. So far they aren't concerned with the numbers they have been getting and he has been having pretty good urine output, but it is too early to tell since he was just being run of my body a day ago and things need to level out for him to get more accurate numbers. Please pray for continued good healthy numbers for his kidneys. Keep praying for his breathing and that after surgery he is still able to breathe well on his own. They will also be placing a PIC line which is a central IV that lasts longer than a regular IV since he will need to be on IV for a while. He has such a long long road ahead of him with many treatments and many surgeries but we are so thankful his is here, he is breathing and overall they are happy with how he is looking considering all his conditions. He is the sweetest thing and we are so so in love with him. He needs lots of prayer, and so do we. Lots of fears, LOTS of emotions that come so easily. Last night we only got about an hour of sleep. It's so hard when you can't have your baby with you and don't know if he's ok. Physically, I am feeling fine, hardly any pain, thank goodness. And labor was the quickest thing! So we thank you for all your prayers so far and are thankful for your continued prayers for us and our sweet brave baby boy. We love you to the moon and back and then some more sweet Kaleb! You're perfect in all your ways!