On April 6th, we came home from CHOP, just in time for Easter. Isaiah was not fully recovered at discharged, but definitely on the road. It took about another week for Isaiah's system to further adjust to his new tube feeds and to recover from C-diff. Every day, he gets a little bit stronger and attempts to take a few more bites of food. YEAH!!!!!
HUGE PRAISE!!! Talk about awesome--for the first time in 3 years we were able to really play with Isaiah, tackle him, tickle him, just really laugh hard together as a family without him throwing up, stopping because of pain, or stop because of retching. This was huge for us and finally a sign that this last surgery was definitely worth the pain and difficulties we experienced.
A tentative date for the feeding clinic has been set for May 21st. Isaiah will go to Good Shepherd, Bethlehem for approximately 4-8 weeks. It is an inpatient program, so he will be there full time, except for the CHOP visits down in Philadelphia. We are still asking for help to spend time up at Good Shepherd with Isaiah during the day and overnights. Chris and I need a little break from all the running. Plus, we need others to learn the feeding methods in order to help us help Isaiah. Please let us know if this is something you would be willing to do. You can contact us through our email at isaiahsjourney@yahoo.com.
Thank you again to all of you that have helped us out over the past 3 months. We couldn't have made it without your support, prayers, meals, letters of encouragement, and other gifts. Each of you play an integral part in this journey with Isaiah.
Please pray for the following:
1. Success at the feeding clinic for Isaiah.
2. That our insurance will help cover replacing the floors that have been ruined from the past 2 years of vomiting and leaking tube feeds.
3. For Josiah--he has been struggling recently with significant asthma flare ups, partly related to the carpeting issue. Pray for his health and also for his sensitive heart as he will be separated again from Isaiah for 4-8 weeks. Josiah didn't do well with being separated so often over these past 3 months.
Sunday, April 22, 2012
Thursday, April 5, 2012
MOVING FORWARD...
I know you are sitting on the edge of your seat, with bated breath, wondering what is going on with Isaiah. Well, we are finally moving in the right direction towards discharge. So far, Isaiah has been tolerating his new tube feeds without pain or retching. He still has periods of gas, but no where near the amount he did with the initial formula. He continues to take a few bites of his meals, but no more than 7 bites at a time. Unfortunately, he has yet to move his bowels without any assistance. He will get another x-ray of his abdomen today to make sure he is not backed up again with poop. If Isaiah tolerates his bolus tube feeds today with his overnight continuous feed at full strength/volume and his x-ray is ok, he may go home tomorrow.
Once he is stabilized and healthy, we will try to send him to Good Shepherd's feeding clinic in Bethlehem. He continues to have many issues with textures, a hyperactive gag reflex, and trouble with biting/chewing/swallowing foods. But, the clinic is still a ways off as of right now.
A new issue arose this admission. Pulmonary did a CT scan of his sinuses to see if there were any abnormalities due to the fact Isaiah has had many lung/sinus/ear infections since birth. What he found was that Isaiah's 3 sinus cavities (4th is still developing) were completely filled with mucous. The doctor doesn't know if this is an acute infection, that has not been affected by current antibiotics, or if this is related to a syndrome called Primary Ciliary Dyskinesia or PCD. You can look up PCD at http://www.med.unc.edu/pulmonary/areas-and-programs/pcd-research-treatment-at-unc. Isaiah will need to come back in the next couple of months to have biopsies taken from his lungs and nasal passages to confirm this diagnosis.
Things to pray for:
1. Continued healing for Isaiah
2. Continued strength and health for all of us.
3. Continued safety as we drive back and forth between CHOP, home, Josiah, work, etc.
4. That we can work out Isaiah's continued care with the state of PA for PT/OT/Speech/Behavioral therapists. Right now, since turning 3, the state wants to cut out all of Isaiah's therapies, except behavioral.
5. That I can return back to work soon--I've been out from work for the past 3 weeks.
We often get asked, "What can we do to help?" Here are some ideas:
1. First and foremost, PRAY!!!! Exhausted doesn't even begin to describe how we feel at this moment and we are totally depending on your strength and your personal relationship with God to carry us through.
2. Gas cards
3. Grocery cards
4. Meals
5. Babysitting
Once again, thank you to all who have been regularly upholding us up in prayer, or have been helping us out through meals, watching Josiah, and other gifts. We greatly appreciate it. God bless you as you have blessed us.
Have a wonderful Easter remembering the life, death, and resurrection of our wonderful Lord and Saviour, Jesus Christ.
Once he is stabilized and healthy, we will try to send him to Good Shepherd's feeding clinic in Bethlehem. He continues to have many issues with textures, a hyperactive gag reflex, and trouble with biting/chewing/swallowing foods. But, the clinic is still a ways off as of right now.
A new issue arose this admission. Pulmonary did a CT scan of his sinuses to see if there were any abnormalities due to the fact Isaiah has had many lung/sinus/ear infections since birth. What he found was that Isaiah's 3 sinus cavities (4th is still developing) were completely filled with mucous. The doctor doesn't know if this is an acute infection, that has not been affected by current antibiotics, or if this is related to a syndrome called Primary Ciliary Dyskinesia or PCD. You can look up PCD at http://www.med.unc.edu/pulmonary/areas-and-programs/pcd-research-treatment-at-unc. Isaiah will need to come back in the next couple of months to have biopsies taken from his lungs and nasal passages to confirm this diagnosis.
Things to pray for:
1. Continued healing for Isaiah
2. Continued strength and health for all of us.
3. Continued safety as we drive back and forth between CHOP, home, Josiah, work, etc.
4. That we can work out Isaiah's continued care with the state of PA for PT/OT/Speech/Behavioral therapists. Right now, since turning 3, the state wants to cut out all of Isaiah's therapies, except behavioral.
5. That I can return back to work soon--I've been out from work for the past 3 weeks.
We often get asked, "What can we do to help?" Here are some ideas:
1. First and foremost, PRAY!!!! Exhausted doesn't even begin to describe how we feel at this moment and we are totally depending on your strength and your personal relationship with God to carry us through.
2. Gas cards
3. Grocery cards
4. Meals
5. Babysitting
Once again, thank you to all who have been regularly upholding us up in prayer, or have been helping us out through meals, watching Josiah, and other gifts. We greatly appreciate it. God bless you as you have blessed us.
Have a wonderful Easter remembering the life, death, and resurrection of our wonderful Lord and Saviour, Jesus Christ.
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