PAMPERED CHEF FUNDRAISER FOR ISAIAH...

My friend, Jen Black, contacted me to do a fundraiser for Isaiah. He is having right hand surgery Friday, April 16, 2010. It is a complex 3-4 hour surgery that will require 3 months of recovery time, with many trips to CHOP Main and Chalfont for checkups and rehab. If all goes well, Isaiah will only be at CHOP for 2 days. We will be staying at the Ronald McDonald House during that time. Jen works for Pampered Chef, and will be having a show at her house on Friday, March 26th at 7pm. She also has a website that you can purchase products through. If you have any questions, or would like to attend the show, you can contact her through her website or me through our email, isaiahsjourney@yahoo.com to obtain her address and directions. The following instructions Jen gave me for those who cannot come to the party but would still like to order something from Pampered Chef---
Directions for Contributing to the Fundraiser for Isaiah:
1. Go to www.pamperedchef.biz/jenniferblack
2. Click on “Shop Online”
3. Go to option 1 to purchase within a show.
4. Type in "Isaiah Miller"
5. Click on Isaiah Miller
6. Start shopping! I recommend that you immediately go to “Guest Special” and select the item you would like for free. If you don't qualify, it will let you know. It's better to remove instead of forget to do it completely. For the month of March, if you spend $60, you get a choice of a Bamboo Tool Set for FREE.
7. When finished, click on “proceed to checkout.” The website is “VeriSign Secured,” so your information will be protected and no one else (including me, the consultant) will see your information.
8. Thank you for your support of Isaiah!

Below is the details of how this fundraiser helps Isaiah:
• 15 percent contribution goes to cover the extra costs surrounding Isaiah's surgery
• $3 contribution for each booking (if you book a Show, Isaiah gets $3 for each booking)

Jen will be trying to close out the show by March 31st. However, you can still order something in April and the proceeds will still go to Isaiah. Please pass this information onto anyone that may be interested in supporting Isaiah. We would really appreciate it. Thanks for all your love and support!
Below is Jen's Contact information:
Jen Black
Pampered Chef Senior Consultant
410-952-1179
267-373-9510
www.pamperedchef.biz/jenniferblack

ISAIAH'S 1st BIRTHDAY WAS AWESOME!!!!!!!

Dear Friends and Family, We had such an amazing and wonderful party for Isaiah! God answered all our prayers and we had a wonderful celebration of Isaiah's precious life. We can't thank the Moms and Tots group at Bethel Baptist Church enough for organizing and running Isaiah's party, especially Elyse Shedal and Mandy Grogan. It was overwhelmingly exciting to see our little boy make it to his first birthday and to see all the people that were involved in his miraculous life. As we looked around the room, it was amazing to see how many people Isaiah has brought together. Over 200 people attended Isaiah's birthday. We were able to meet several people for the first time, many met Isaiah for the first time, and we were able to catch up with people we hadn't seen in years. Through Isaiah's life, strangers became friends, neighbors became confidants, friends became as family, and our family became a close support system. How amazing is that?!?!?!?! We are tremendously blessed! Thank you to everyone who participated in making Isaiah's birthday so special. Thanks to those who brought food, supplies, assisted all our friends and family, and for all the gifts and support for Isaiah. We love you all very much and appreciate all you do for us. You mean more to us than you will ever know. Our biggest thanks, though, goes to our wonderful Savior, Jesus Christ, who has given us more than we could ever ask for. He is the Great Physician and Provider!!!! Enjoy the pictures!!!!!!!!

SATURDAY IS THE BIG DAY!!!!! ISAIAH IS ONE!!!!!

We are so excited about Isaiah's first birthday this Saturday! A little over a year ago, we were given little hope, told not to expect much. And now, here we are celebrating a year, rather than only 2 months (our original request from God). We are also very excited for you to meet God's little miracle and for us to meet some of you for the first time! It'll be nice to catch up with those we have not seen in years. It amazes me how God has used this little baby to bring so many people together. We had no idea what God had in store for us when He designated us to be Isaiah's parents. This journey has not always been easy, but it has been blessed!

Just a couple of requests for this Saturday:
1) If you or one of your kids are sick, we ask that you stay home.
2) Please wash your hands upon arrival to the Timothy Center and use Purell (hand sanitizer) throughout the day to try to keep the amount of germ exposure down for Isaiah.
3) When meeting Isaiah, please only touch the top of his head, his feet, or any part of his back side. We ask that no one touch his face or hands, since he puts his hands in his mouth.
4) No kissing!

I hope you understand our precautions and don't take it personally. We are just trying to keep Isaiah healthy and out of the hospital. We appreciate your cooperation!!!!!!!!!

In case you lost or deleted the evite, the party is Sat., Feb. 20th, and is held at Bethel Baptist Church (in the Timothy Center) 754 East Rockhill Rd., Sellersville, PA 18960. There is very limited cell phone reception at the church. If you try to reach us and can't get through, we ask that you try calling the church at 215-536-9200. Family is to meet from 1-3pm and friends from 3-5pm (unless you were told otherwise). Can't wait to see you!!!!!!!

GAINING WEIGHT...

Thankfully, Isaiah has been gaining weight nicely since discharge. When he left CHOP, he weighed 15.86 lbs., but he now weighs 16.13 pounds. We are almost back to his weight before he got sick. He continues with his tube feeds during the night as well as a heart monitor. Isaiah is eating much better during the day, but still has a long way to go before he comes off the feeds. Right now, both boys are currently being treated for Strep throat. They both are congested and feeling under the weather. Please pray that they both recover before their birthday parties.

Pray for all of Isaiah's appointments this month----We have 12 appointments with different specialists: GI, 3 different orthopaedics, ENT, Audiology, Primary Peds, Feeding Clinic, Neurology, Early Intervention, OT splinting, and Homecare. These are appointments besides all of his weekly therapies, which they plan to increase to 4-5 times a week (up from 3). Needless to say, I'm a bit tired with all the travelling and having to stay on top of things. Chris and I could use a break, but Isaiah has to take priority right now for the best possible outcome for him.

Thank you for all your continued prayers and support. I will admit, right now, I'm pretty overwhelmed and feel a bit forgotten by God. In my head, I know that's not true, but my heart is crying out for relief. I'm not always strong or spiritually sound, so right now I could really use your specific prayers to help me through this journey and to learn to focus on God's blessings verses the negative. I need to believe wholeheartedly that God does know what He is doing and learn to depend completely on Him. I need to learn to believe God is love and wants what is best for us.

"He is before all things, and in him all things hold together," Colossians 1:17

"Praise the Lord, O my soul; all my inmost being, praise his holy name. Praise the Lord, O my soul, and forget not all his benefits— who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle’s. As a father has compassion on his children, so the Lord has compassion on those who fear him; for he knows how we are formed, he remembers that we are dust. But from everlasting to everlasting the Lord’s love is with those who fear him, and his righteousness with their children’s children. Praise the Lord, all his works everywhere in his dominion. Praise the Lord, O my soul," Psalm 103

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!