Wednesday, July 28, 2010

FANTASTIC NEWS!!!!!!!!!!

Once again, God answered your prayers as we waited for the endocrinologist to get back to us about Isaiah's issues. According to the Diagnostic specialist we saw, the endocrinologist felt very strongly that Isaiah does NOT have anything wrong with his pituitary, adrenal, or thyroid glands. She reviewed his entire chart, labs, radiology reports, etc. from birth til now. Per this doctor, Isaiah is showing NO signs of these particular glands being affected-----PRAISE THE LORD!!!!!!!!!! He will have his thyroid levels repeated just to make sure they are back up to normal (they were a little low in January due to his sickness). We are still waiting to see if anything needs to be done about his spine.

Another exciting moment for us was when Isaiah walked for the first time this past Monday!!!!! He balanced himself off of the therapist and took 4 unassisted steps to me. Then he took another 6 unassisted steps for the video camera for daddy. We were very excited! Then, at the park, Isaiah decided to climb up the stairs of the jungle gym ALL BY HIMSELF!!! I didn't even know he could do that! He is on a rampage now! Hopefully, you can see some of the video clips we tried to attach!

Surgery is back on for Wednesday, August 4th. Isaiah will have the G-tube placed in his stomach for feeds. It'll be much easier to manage, and hopefully we will have less mishaps from the extended tubing we are currently using--we've found Isaiah at the bottom of his crib with the tubing wrapped around his neck a few times. Fun huh?!?!?

TWO PRAYER REQUESTS:
1. That surgery goes well and that it will actually improve Isaiah's reflux and appetite.
2. That we can get in to the Ronald McDonald House. We won't know till the day of if we can get a room at the house. We need a room from Tuesday til Sat. Please pray with us.

Thank you again for carrying us through a very scary time!!!!



Tuesday, July 20, 2010

SURGERY AUGUST 4th----UPSETTING NEWS

Well, we were at CHOP again on July 15th and on the 19th to see more specialists. On Thursday, we left the house at 6:20am and didn't return til 7:15pm, a very loooong day. I am going to try to give you the short version of what is going on.

Isaiah saw Radiology, General Surgery, Pulmonology, Anesthesia, and Diagnostics on the 15th, and Cardiology on the 19th.
1. Radiology: a repeat chest X-ray was done, and his lungs were clear. This is a praise since his last x-ray was abnormal.
2. Surgery: Isaiah is tentatively scheduled for surgery August 4th for a G-tube placement into the stomach for feeds, which would replace the NG tube in his nose. Surgery believes he stills needs the Nissen procedure, but we are desperately trying to avoid that because of all the complications that surround it. He will be hospitalized for 2-3 days post-op, and we will be staying at the Ronald McDonald House again (if possible).
3. Pulmonology: Isaiah has been officially diagnosed with a moderate case of asthma. The doctors put him on 3 new medications and is having him rechecked for cystic fybrosis. The original blood tests for CF were inconclusive for them.
4. Anesthesia: Isaiah is cleared for surgery as long as he remains well and stable. He will have to be closely monitored post-op to try to prevent any apneic/bradycardic events.
5. Diagnostics:This was the most intensive appointment of the day. Dr. Mark was incredibly thorough and found some abnormal lab work that had been missed by other doctors. Apparently, Isaiah's thyroid and vitamin D levels are low. Also, he may have pituitary problems and spinal issues. The abnormalities with the thyroid and pituitary have a direct affect on Isaiah's growth and development. If the docs can not regulate/correct the problems with the thyroid and pituitary, the worst case scenario is that Isaiah will stop growing and developing. This was incredibly difficult to hear. I will find out more this week what the plan of treatment will be for Isaiah. I know he will need more lab work and probably 2 separate MRIs, one of the brain and one of the spine. Dr. Mark wanted to confer with several other specialists---Endocrinology, Genetics, Urology, and Surgery---to determine what would be best plan for Isaiah. Pray for wisdom for them.
6. Cardiology:Isaiah has been having subtle changes on heart monitor that he wears during tube feeds and at bedtime. We went from normal readings, to a low resting heart rate of 50-60 bpm, to now having apneic episodes. Cardiology does not feel Isaiah has anything structurally wrong with his heart, but that part of the central autonomic nervous center of the brain may be causing the changes (i.e.the pituitary). His last EKG was normal. Dr. Boris is curious to see what would happen if all the labs stabilized. Abnormal thyroid and pituitary levels can have a direct affect on the heart as well as other important organs/systems of the body. Isaiah is currently on a 24 hour Holter monitor. I am hoping that whatever episodes Isaiah has been having will be captured by the Holter.
7. Primary Pediatrician: Last, but not least, Isaiah's primary doctor has some concern about the adrenal glands. I called the Diagnostic doctor to let him know. I am hoping that all the doctors can coordinate what tests they need as to not have to put Isaiah through too much.

Well, this is the abbreviated version of the craziness that is going on right now. We need alot of prayer, grace, and wisdom to figure out what's happening in little Isaiah's body. Please pray that everything can be stabilized, and that nothing serious will happen to him. Thank you.

Thursday, July 1, 2010

STAMPIN' UP FUNDRAISER DURING JULY

Dear Friends and Family,
A dear friend of mine approached us about doing a fundraiser for Isaiah during the month of July. It continues to amaze us how God moves people to meet our needs without us ever saying anything. God is truly generous to us.

Misty Denlinger works for Stampin’ Up as a consultant and will donate her sales commission during the period of July 1, 2010 – July 21, 2010 to our family. Any profits from an order placed during that time under Misty, that mentions in an e-mail or phone call to her that it is for Isaiah, will go to our family. To place an order or browse the products, please follow the following steps:

1. Go to www.stampinup.com
2. At the top right of the screen click on Find a Demonstrator
3. Where it says Demonstrator Directory type in Misty Denlinger State: PA
4. Misty’s information will come up and you can click on her website.
5. You can begin to shop products individually, download a catalog, etc.
6. You can order directly on the website under Misty or you can contact her directly at 215-361-2654 or mddenlinger@verizon.net. If you live locally this may save you a little on shipping.
7. Make sure you not only check out their beautiful stamps and paper but also under Home D├ęcor the Vinyl Art and stencils.
8. Please place your order under Misty Denlinger’s name and then notify her by e-mail or phone that the order you placed is for Isaiah.

It's important to notify Misty of the order you placed so she can credit Isaiah's account. Unfortunately, there is NOT a place online to specify that your order is for Isaiah. If there is any confusion or questions, please contact her. She is more than willing to answer any questions.

Thank you all for your continued love and support, and thank you to Misty for reaching out to our family.