LADIES & GENTS, WE HAVE POOP!!!!!!!!

And you thought I was going to say lift-off?!?!? !0)  I think my favorite thing about staying here at the Ronald McDonald House, is that I am surrounded by other moms that get just as excited as I do when our children pee, poop, or pass gas.  It gets rather funny how crazy excited we get for each other and our kids.  For example, one mom received a call from her baby's nurse that he pooped for the first time since delivery.  He is a preemie with many complications.  She was so thrilled, she asked the nurse to save it so she could see it, cause she couldn't believe it finally happened.  When she got to CHOP, she found the nurse had wrapped the diaper up with a bow, which mom then proceeded to take a picture of it!  I loved it! 

We live in world so separated from the normal, that these small triumphs are HUGE victories in our children's lives.  I swear, someday when Isaiah actually gets a chance to read this blog, he is going to ask me, "Mom, was it really necessary to tell the world I pooped?!?!?"  I will say, "ABSOLUTELY YES!"  You have to understand, Isaiah has now defied death twice.  God allowed him to live through the pregnancy/delivery/birth, and now through this past bowel obstruction/strangulation.  I honestly didn't realize til 3 days after his emergent surgery, that Isaiah was knocking on heaven's door, that his surgeon did not expect him to do well.  I thought it was interesting his surgeon stayed until 4am to monitor him, but I didn't understand why til later--- it was because the surgeon wasn't sure Isaiah was going to survive.  Your prayers, and God's desire to perform a miracle for a second time, changed the outcome of Isaiah's life once again.  Thank you.  So for me, when Isaiah's kidneys started to produce urine again---I was excited!  When he passed gas on Thursday, I was even more excited!  When he pooped twice yesterday, I celebrated with my fellow mommies that have been down this path before!  WHOOOHOOO!!!!

So, in a nutshell, my friends, Isaiah's systems are starting to work normally again, which brings us just one step closer to going home.  This next week, they will start clamping his G-Tube, allowing his stomach contents to go through his bowels, rather than out into a bag.  Towards the end of the week or sometime next week, they may start him slowly on tube feeds.  He has been out of bed a couple times a day to walk and is starting to participate in playtime.  He continues to have quite a bit of pain and anxiety, but thankfully, he was able to come off of his continuous Dilaudid pain infusion, and they were able to back down on his anxiety medication.  PROGRESS!!!!

Continue to pray for this next month, as it will be crazy busy.  Josiah starts Kindergarten September 6th, but has several meetings before then.  We are not sure how we are going to work out all the dynamics.  Pray for pain relief for Isaiah and continued healing.  We probably won't be home for another 4 weeks.  Also, pray for a grant we applied for for Isaiah, that it would be approved.  We won't know for another month if he qualifies.  If we get it, it will allow us to purchase some much needed items for Isaiah, as well as offset some of the costs we are accruing.

Thank you again for your continual support and prayers.  Isaiah is here because of your intervention, of your "standing in the gap" (Ezekiel 22:30) for us before the throne of God.  For this, we will be eternally grateful.

Jeremiah 1:5, "Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations."  Isaiah's journey continues to go around the world.  He is a testament to God's greatness and faithfulness.  Isaiah is a prophet to the nations, a miracle created only by God's hand.

WEDNESDAY---A GOOD DAY...

Yesterday was a good day for Isaiah...Praise the Lord!  Thank you for praying, because God has been answering.  Even though Isaiah still has a significant amount of pain, and needs frequent pain medication rescues, he was able to sit at the side of the bed, to work with Occupational therapy, was out to a chair for a couple of hours, and he was able to pull himself up to a sitting position without any assistance.  He also walked a few steps from his bed to the couch.  Amazingly, I heard bowels sounds today, which is HUGE!  He is asking to drink and eat...also, steps in the right direction.  Unfortunately, he won't be allowed to eat or drink for at least another week.  Pray for patience and endurance in this area for Isaiah, and that maybe God would remove this desire just until he is allowed to have food/drink again.  Please continue to pray for good days and peaceful nights.

It has been nice having Josiah down here this week.  He brings so much joy to Isaiah.  Isaiah asked 1 1/2 days after surgery if Josiah could climb into the crib with him.  Even in pain and discomfort, Isaiah absolutely loves being close to his big brother.  We are truly blessed to have 2 little boys that love each other and are best friends.  They are fiercely protective of each other.

As Josiah starts school in the next couple of weeks, things are going to be a bit tricky scheduling everything.  Please pray for wisdom as we make decisions as a couple that would be beneficial to all of us.  If anyone is able to help us out during the month of September with either sitting with Isaiah here at CHOP (including some overnights), or helping with getting Josiah back and forth to school, please let us know.  We truly are incredibly grateful for all the help we have received so far.  We cannot say "Thank you" enough, nor do we have words to adequately express how much your generosity has meant to us.  Your strength and hope helps us keep moving forward.

Please continue to pray for the following children at CHOP that are fighting to overcome serious health obstacles:  Braydee (open heart surgery), Kaitlyn, Fatima, Maria, Dwayne (waiting for a heart transplant), Aiden (brain cancer), KeVaughn (KE), Seth (needs surgery again), Hugo, Koby, Josiah, London (eye cancer), Ella (eye cancer), Olivia, Brooke (cancer), and Richie (cancer).  Thank you and God bless.

OUT OF SURGERY...

Isaiah went into surgery around 12 noon, and came out around 2:45p.  However, we did not get back to his room until 9pm.  He was having a lot of uncontrolled severe pain that was causing him to have very high heart rates and low oxygen levels.  He's been holding his breath (splinting), instead of taking deep breaths because his belly hurts.  He's turned blue a couple of times and has needed oxygen.  We are hoping that with being back in his room, he will be more comfortable and calm down.  If Isaiah continues to need large amounts of pain medication or blow-by oxygen, he may need to be transferred back to PICU for closer observation/monitoring.  Please pray that his anxiety levels and pain levels come under better control.  We would like to have a nice recovery in his room.

Thank you for your continued prayers and support.  Isaiah still has a long road ahead of him and recovery will be slow--this is expected.  Continue to pray for patience and endurance for us.  Pray for Isaiah's bowels that they will heal quickly.  Pray for Josiah as this is all very overwhelming for him.  Thankfully, Chris's mom Viviane, is down with us this week and in 2 weeks, my mom will be back up here from TN to help us out.  We have been so thankful for all the help from everyone.

SURGERY IS SCHEDULED...

August 20th is the set date for Isaiah's reversal ostomy surgery. He is scheduled for 11:30 tomorrow morning, and the plan is to put back together his intestines with the hope that his bowels will start reabsorbing nutrients again. Please pray that all goes well, and that 3-4 weeks from now, we can go home. This has been a very grueling journey for all of us. We are scared for this surgery, seeing we almost lost him during the last one. Plus, if his intestines don't start working again, we will need to remain here much longer. We need another miracle in his little body.

Thankfully, his spirits remain high. He is happy and playful, and continues to flirt with all the nurses telling them they are "pretty" or "beautiful". He is rather entertaining to watch in action. In a nutshell, we know we are definitely in trouble when he gets older. He already thinks he is a "ladies man".

Tonight we were able to spend time together as a family, reading devotions, and praying together. We definitely miss doing this regularly. Josiah is so sweet and gentle to his little brother. There is so much love between them. We are blessed to have 2 wonderful boys whom absolutely adore one another. We long for the day they can play together without a care in the world. Thank you for continuing to pray and lift us up. You are partners with us in this journey, and your strength allows us to continue putting one foot in front of the other.

TENTATIVE SURGERY DATE...

It's hard to believe that poor Isaiah has been at CHOP for 7 weeks and has not been home in 10! This has been an incredibly long journey and terribly painful at times. Thankfully, Isaiah has been in relatively good spirits the last few weeks, considering all he has been through. It has helped that he has had different friends and family stay with him, distract him, and bring fun things to play with. Thank you to everyone that has helped Isaiah cope with not so normal circumstances.

As of right now, we have a tentative surgical date for August 20th. Isaiah has continued to dump his food/nutrients out into the ostomy bag and has not been able to come off of his IV nutrition, despite all of their tricks. Dr. Collins is hoping that by reattaching the rest of his bowels, Isaiah will have a better chance of absorbing. It is not guaranteed that Isaiah's bowels will start reabsorbing, and that scares us. We have no where else to go right now, except into surgery. Please, please, please pray that this reattaching works. This will be a multi-step surgery as pulmonology and ENT need to get biopsies from Isaiah's lungs and nasal passages.. They are trying to rule out PCD, a possible diagnosis we were given back in March. We are still looking at another 6 weeks here.

As school starts soon for Josiah, we are just not sure how to manage everything. We won't be home before he starts kindergarten. Isaiah was also to start a specialized pre-K that incorporated some of his therapies. Pray that we can somehow figure out how to manage the boys, because so much has already been stripped from them. Regularly, one or both will say to us, "I want to go home and sleep in my own bed," or, "I want to be with you"; "I miss you"; "Don't leave me," or "I'll be good." It's heartbreaking for us to see them in pain. We just wish they could have a normal childhood, running and jumping, playing with their friends, looking forward to school. This year alone, we've been home only in January and May. The rest has been spent in a hospital or rehab setting. However, we've adapted the saying, "It could always be worse."

Continue to pray for the following children: baby Kaitlyn and her family, as they are in a very tough situation. Also, Dwayne (9 yrs. old) is waiting for a new heart. Seth starts a new therapy regimen. Aidan is still fighting brain cancer and his mom just had another baby boy, Brenden, who has a heart condition. Thank you for praying for Taylor. She finished her cancer treatments and was able to go home. Babies Fatima and Maria continue to get better, though it is very slow going. Baby Jenny was stable enough to be transported back to a hospital in Canada where she is from. We know all these parents covet your prayers just as much as we do and would say thank you if they had the opportunity.

On a side note, my grandpa, Dr. David Solt, had a heart attack this weekend. He was rushed to Doylestown hospital where had a catheterization and stent placement. He is doing ok, but we would covet your prayers for him as well. Both he and my grandma have been our faithful prayer warriors for years.

VERY LITTLE PROGRESS...

Isaiah has made very little progress over the last several weeks. He is in great spirits; it's just his body that needs to catch up. He has NOT been eating by mouth, and what little feeds he has been getting through his G-tube, he has NOT been absorbing. He continues to dump out into his colostomy bag. The team will tweak what goes into his stomach, and he will do well for a couple of days. But, then his GI system starts to dump the nutrients out into the colostomy. This is what is keeping us here at CHOP. Isaiah cannot come off the IV nutrition (TPN/Lipids) until he is stable enough on either the tube feeds and/or food by mouth. It is very frustrating. All the progress we had made with eating at Good Shepherd is now a moot point. It's as if we were never there. However, we do have 2 small praises and they are that Isaiah's liver enzymes are returning to normal and he continues to gain weight. We take what we can get.

*Tomorrow, Isaiah needs his PICC line replaced. One of the ports was cracked during routine care/cleaning. He must go under general anesthesia. Please pray that the IR team can successfully and safely change out the PICC IV with little problems or resistance. Having the PICC cracked leaves Isaiah wide open to an infection getting into his central blood system. This has been very nerve wracking. Pray that Isaiah stays healthy and continues to remain infection free.*

There are 2 families that especially need God's intervention right now. They have both been given very difficult news this week. Julian, a 5 yr. old boy, has been fighting cancer over the past year and has gone through every treatment available. His body still has cancer. Even though the doctors have not given much hope, God can still do a miracle. The other family has a newborn daughter, Kaitlyn, that has really been struggling to survive this week. She is a tough little girl. Pray for miracles in both of these situations. Pray especially for the parents as this is all very overwhelming and draining.

Of all the stays we have had at CHOP and the Ronald McDonald House, this time has been particularly difficult on everyone. Usually, there are a few success stories with kids going home, which gives us all hope, keeps us excited, and keeps us going. However, we are finding most of us here are struggling with prolonged illnesses, significant setbacks, or must overcome huge physical/health obstacles. We need to see some serious God-intervention.

Please continue to pray for the following children at CHOP: Seth, Maria, Jenny, Fatima, Josiah, Jax, Bailey, London, Eddie, Aiden, Dasha, Taylor, Jonathan, and others. We have had the privilege to meet all of their families, and they are all an amazing group of people. We did see one huge praise when Grace, 4 yrs. old, was able to go home shortly after major back surgery! What an amazing child she is!!!!

Thank you for your continued love, support, prayers, etc. Tired does not even begin to express how we feel. But, your persistent petitioning to God has kept us going. We don't know how much longer we will be here. They keep saying another 6-8 weeks (we've been here almost 6 weeks). This time frame can be shortened significantly if Isaiah's body starts to absorb nutrients and stabilizes. That is our prayer.