HOME...

We came home late Monday night from CHOP. Isaiah had his first nurse home visit at that time. By the time the nurse was done examining him and setting up his feeding pump, it was late and we were exhausted, but we were home!!!!!!!!!

What Isaiah was diagnosed with this time at CHOP was C-Diff (from being on antibiotics for his ear infections) and Norovirus which is what caused his diarrhea and vomiting. He lost over 2 pounds. He did come home with a feeding tube and a heart monitor. Isaiah gets continuous feeds of fortified formula during the night and is encouraged to eat whatever he wants during the day. Hopefully, as he becomes stronger and eats more, the docs will lessen his feeds and Isaiah could come off the tube permanently. The docs also found that Isaiah's reflux is pretty significant and they would like for him to have surgery in the next couple of months. However, the surgery (called Nissen) is pretty involved and can have A LOT of complications with it. We are not sure this is the route we want to take. But, if Isaiah's intermittent vomiting that he's had over the past 3 months does not resolve, we may not have a choice.

It was a HUGE blessing to come home to a clean and disinfected home. Thank you to the ladies from our amazing church who took the time to make our home safer for Isaiah's return. Thank you also to those who helped us with food, meals, gas cards and other financial needs. We are so blessed to belong to a true Bible-believing church filled with people who demonstrate God's love to us regularly.

We have several requests that need your prayers:
1. For Josiah--the separation this time was very difficult for him and he has been having a hard time assimilating back into family life. It's getting harder and harder leaving Josiah, but often we don't have a choice. Pray that any future separations won't leave a permanent, negative mark on his precious, little heart.

2. For Isaiah to continue eating and gaining weight so he can avoid surgery.

3. For all the appointments in Feb. I need help watching Josiah on Feb. 18th and 24th. If anyone could take care of one or both of those days, I would appreciate it. I am also looking for someone to go down to CHOP with me on Feb. 24th.

4. Chris and I would love a small vacation away somewhere warm, sunny, and with a beach. We could use a break with quiet time to reconnect.

Thank you again for your love and support!

DOING BETTER....

Well, your prayers have been working. Today, for the first time, Isaiah looked and seemed to be feeling much better. He was playing with us and making faces and trying to make us laugh. He kept his food down and only had one bout of diarrhea. He is SLOWLY gaining weight, and may be able to go home in the next couple of days. He will come home with the feeding tube and an apnea monitor. We enjoyed having Josiah down here for the weekend. Isaiah was so happy to see him as were we! Josiah is back now with his cousin Danny. Thank you for constantly thinking and praying for us!

We have met several amazing families and children down here at the Ronald McDonald House. We ask that you also pray for these special children: Noura(from Saudi Arabia)-fighting cancer; Alex(from Poland)-facial/cranial reconstruction; Isabella(from PA)-fighting RSV and is on a vent; Cailee-has 2 more surgeries to endure; and Derek(from PA)-having hemangiomas removed. Pray that we can stay in contact with these wonderful families and that God will show Himself real.

SO, HERE'S THE SCOOP...

Isaiah has been down at CHOP now since Sat. night. He has seen alot of doctors and has had quite a few tests done. Here's the run-down. I am going to use some medical terms, so if you have questions, please consult the internet. My brain is just too tired to explain everything---sorry!

Isaiah's fontanelles are still very open, which could be related to a nutrition deficiency, not sure. Neurology will further investigate. Scoliosis of the spine was ruled out, but mild left hip dysplasia was diagnosed. He will need a special brace designed for his hips, but it will be done as an out-patient procedure at a later date. His femoral heads have not ossified, and I'm not sure how this will affect him in the long run, but again the docs think it's related to malnutrition. Isaiah will be seen by multiple orthopaedic surgeons/doctors to deal with the weakness in his spine, both of his upper extemeties, his hips and femurs.

Today, I had to place a Naso-gastric tube down for feedings. Isaiah is still not taking in enough food or fluids to sustain him, and he still has periodic vomiting episodes and diarrhea that the docs can't figure out. There is a possibility for surgery later to help correct the reflux problem, but not until he is stong enough. He is very weak and listless. It's hard to watch. He stays awake for about 45min-1hr. and then is back to sleep for several hours. He has significant muscle wasting and is just so skinny. Sometimes, I feel like I'm going to break him when I pick him up. Please continue to pray for him and for us!

Chris went back to work today, and hopefully Josiah can come down to visit this weekend. We are very thankful for the Ronald McDonald House. We met 2 little girls we would like for you to pray for: Taylor P. and Rowan. Their families would appreciate it. Thank you for your continued love and support!

BAD NEWS...

On Friday, Isaiah took a turn for the worse, starting again with vomiting and diarrhea. By Saturday, he couldn't keep anything down, and his urine output dropped significantly. Sooooooooooooooooo, back to the hospital we went (after just being discharged from GVH on Wed). Only, this time he is at CHOP. Chris took him down late Sat. night and he was finally admitted to a bed at 6am Sunday morning. So far with the tests they have done, the doctors see possible blockages in his stomach/intestines. They Drs. are planning to do a barium swallow study and and upper endoscopy (a camera down his throat to see what's going on). He is on IV fluids and is not able to eat. The Drs. do realize how malnourished he is. Both Chris and I believe that something other than reflux and sickness is going on. Isaiah has been having periodic vomiting for the past 3 months, and they don't know why. Pray that the doctors get to the bottom of Isaiah's issues. Before Isaiah comes home, he will receive a feeding tube. We will be staying at the Ronald McDonald House and Josiah will be with his cousin Danny. Please pray for all of us.

ISAIAH IS HOME, FINALLY!!!!!

Thank you for all your prayers and support! Isaiah and I finally made it home on Friday at 4pm from my Aunt and Uncle's home. Josiah had been over his illness for about 48 hours. It's good to be home with my husband and both of my boys! Isaiah will continue with his breathing treatments and antibiotics for the next 10 days. His post-hospitalization check-up with Dr. Greenburg on Friday went well, but she also feels Isaiah does need a feeding tube. She is contacting his GI specialist to see if we can get down to CHOP to see Dr. Haber earlier than Feb. 8th, but we will see. We postponed Isaiah's appointments to CHOP that were on Jan. 15th to Jan. 29th to give us a little break. Continue to pray for Isaiah's full recovery.

Quick reminder, Isaiah's 1st Birthday Party is quickly approaching!!!! We really would like for all of you that read the BLOG to come, and please pass the invite onto your friends and families who have also prayed for his little life. We really want you to meet our little 'M&M' (Miracle Man). Please RSVP to isaiahsjourney@yahoo.com ASAP to let us know if you can come so we can have enough snacks available. Thanks and hope to see you all soon!!!!!!

ALMOST HOME...

Isaiah was discharged from Grand View on Wednesday afternoon. He was sent home on breathing treatments every 4 hours and antibiotics for a double ear infection and sore throat. Unfortunately, we were unable to go home since Josiah woke up with vomiting and diarrhea on Wed. Currently, Isaiah and I are staying at my Uncle Bruce's and Aunt Liz's home until Josiah is better. The CHOP doctor encouraged us to keep the boys apart for at least 48 hours until Josiah is passed the worst. Hopefully, we will be home late Friday night or early Saturday.

Thank you for praying for all of us and also for the meals provided. It is a comfort to my heart to know that all I need to do is ask and my men are taken care of. Thank you also to everyone who helped watch Josiah.

Please continue to pray for Isaiah's full recovery. He lost 1 1/2 pounds and is still not eating or drinking what he needs to catch back up. Chris and I are now seriously considering a feeding tube/PEG tube for him. Isaiah is just so skinny right now, with even more muscle and tissue wasting than before. We are concerned that if we don't start fattening him up now and getting him more nutritionally stable, he will become more physically and developmentally delayed. We are afraid that if he were to get sick again, he will even have a harder time to recover because he has no reserves. And, with major surgery coming up in April, he needs to be as healthy as possible. We have several doctors appointments coming up in the next 2 months. Pray we make the right decisions.

I did get some wonderful opportunities in the hospital to share Isaiah's journey and the path God has chosen us to take. Several doctors, nurses, and a couple parents now have Isaiah's blog address. Pray that they read it and see God's amazing power and providence. "Every experience God gives us, every person He puts in our lives, is the perfect preparation for the future that only God can see" (Unknown).

Tuesday Noon Update

As of this morning Isaiah's IV has been taken out so they can see how he does with eating and drinking. Because of the IV, Isaiah isn't really getting thirsty so they want to see what he takes in today. They also changed his breathing treatments from every 3 hours to every 4 and also changed what drug was getting administered for the breathing treatments. Hopefully this helps with him dropping his heart rate. His fever broke yesterday but he is still receiving pain medication for his ear infections which is new. If he eats and drinks well today, we should be able to take him home tomorrow. At least that's the plan for now.

Thank you all for your prayers, calls, meals, etc.... It's GREATLY appreciated.
Chris & Joy

Sunday Night Update

Isaiah is still in the hospital. He is starting to eat but very little. It is staying down so that is an improvement. He still has a low grade fever that they are keeping under control with meds. He's also still getting his fluids by IV as he really isn't drinking much either. Joy had a rough night last night and I relieved her around noon so she could go home and take a nap. When Joy got back to the hospital, I had to head back home to relieve my parents who have been watching Josiah all afternoon. Joy told me tonight that Isaiah is have episodes where he is dropping his heart rate. Nobody is sure what this means right now. Continue to pray that this a small part of the RSV and the doctors and us are not missing something else hiding. Pray his fever breaks and he starts eating more. Then he will be able to come home.

Every obstacle the Lord puts before us, He's trying to show us something. We have seen so many blessings and met so many people we wouldn't have met through Isaiah's birth. This is just another opportunity to see God work. I pray we will see what the Lord has to show us. We just heard tonight of a mother who is expecting and the baby has complications. The mother was thinking of having an abortion but one of our friends shared Isaiah's story and that mother has since changed her mind. As if Isaiah's life isn't enough, it's great to see other's lives affected positively as well. God is GREAT!!!

Again, we'll keep everyone posted of Isaiah's progress as soon as we can. Have a great night.
Chris and Joy

Update.......

Isaiah has been admitted to the hospital. He will spend the night and we will see how he is tomorrow. He tested positive for RSV. He is still having trouble taking any food and liquids. They were able to get the IV started, so we are taking care of the dehydration. We will see how everything is in the morning. Joy will be staying at the hospital for the night. I went to drop things off and see Isaiah while my parents stayed at our house and watched Josiah. Hopefully Isaiah gets the rest he needs and his fever breaks tomorrow. We also neeed him to be able to start keeping down foods. Thank you everyone for your prayers. We'll keep you updated as soon as we can.

Thanks
Chris & Joy

IN NEED OF SOME PRAYER....

Isaiah is sick again. He's had a fever now for 3 days and been throwing up pretty much everything we try to give him. There is now a ton of congestion in his chest now and the throwing up we feel is due to all the drainage from his teething. All this, for 3 days now, has made us extremely concerned about dehydration and loss of weight.

Joy just left with him to go to the ER. Please pray that they can figure out what is wrong so we can put this behind us quickly. Also pray that he doesn't lose a lot of weight as he has another eating evaluation in a couple of weeks.

Thank you all for your continued support and prayers during these times.

Chris & Joy