24. November 22, 2008

the trip to Mayo Clinic in Jacksonville, Florida was long and exhausting. We arrived in Jacksonville around 2:25am on Monday night. I had to be at Mayo at 6:30am Tuesday. We were there through Thursday afternoon.

I went through three days of appointments and tests (some extremely painful and some that were just annoying). I'll spare you all of the details of the various tests and procedures and just give you a brief run-down on what we know so far from each of the doctors I saw.

- the primary neurologist I saw says he does NOT believe I have neurosarcoidosis. PRAISE THE LORD!!! We didn't get much more information from him because he was the very first doctor we saw on Tuesday and he wanted to review the results from all the tests I was having done and the notes from the other doctors I would see on Tuesday and Wednesday before he gave us any more opinions, etc.

- the pulmonologist (lung doc) says I have some abnormalities around the lining of my lungs, most likely due to damage from asthma and recurring pneumonia. He put me through some lung function tests (one of which was a Methacholine Challenge Test...they gave me methacholine to induce an asthma attack...NOT FUN!!!) which went ok, other than my normal limitations from asthma. He also heard a heart murmur....says this could be nothing....but just to be on the safe side he ordered an echocardiogram for Thursday morning (which is why we had to stay a third day.)

- the neuro-ophthamologist I saw was very concerned about my vision and the damage that my pseudo tumor cerebri has done. Although everything was basically the same as it has been for years, he said that Philip and I were "too cavalier" about it and needed to be more pro-active and aggressive preserving what little vision I have left since my optic nerves have "really taken such a big hit" and are so damaged. He recommends me going to Emory to see my neuro-opthamologist every 3 to 4 months.

All in all, I feel like we got some encouraging news!! I have to go back to Mayo on Monday, December 1st to see my primary neurologist to discuss all of the results and to see where we go from here.

Thanks again for your many prayers and sweet encouraging words!
Love and blessings to you all!

23. November 14, 2008

i'm not feeling well today...i've had a really bad headache all morning. i'm also having more and more trouble with my hands...not sure if the cold weather is a factor, but it kind of seems like it.

philip and i will leave late monday night (after drama rehearsal for "I'll Be Home for Christmas") to drive to Jacksonville, Florida for my appointments at Mayo Clinic. My first appointment is 7am Tuesday...i'll have appointments and tests all day tuesday and wednesday. i'm not looking forward to the actual appointments, but am looking forward to the prospect of getting more answers and figuring out where we go from here.

we should be home late wednesday night, unless they (Mayo) decide to keep me longer. i will have access to a computer while i'm there, so i'll keep you all posted on how everything is going.

thanks for your prayers!!! pray for philip to be able to stay awake monday night!!! :)

22. November 6, 2008

today is Paxton's day for a miracle!!

we just got back from atlanta. we went to see paxton's GI specialist to get the results from his endoscopy & colonoscopy.

1. the colitis that was all through paxton's colon & other parts of his lower GI system when we did these biopsies a year ago....was G-O-N-E!!! the doctor was completely puzzled!!! he kept repeating how it was "everywhere" before (a year ago when we had these same tests) and there were "sheets and sheets" (meaning...a lot) of these colitis cells and that they were even at the "moderate stage" (in between mild and severe)....but that this time there were NONE!!!

HALLELUJAH!! i'm so thankful for a God who hears our cries and answers prayers!! paxton's doctor was not as quick as i was to rejoice...he was a bit more skeptical and did say that "we still have to keep an eye on this, because it could come back"...but i'm clinging tight to the promise that paxton is fearfully and wonderfully made and that God has a plan for paxton's life...a plan to prosper and not to harm him, plans for a hope and a future...

2. the lining of paxton's stomach still looks really bad and has patches of blood all through it. his doctor says this is primarily from acid damage. he wants to keep him on the prevacid and hopes that will eventually help him more.

3. we found out today that paxton is lactose intolerent!! his doctor said his lactose level was significantly low. so....we have to change his diet a bit (paxton is a HUGE milk drinker and eats LOTS of cheese and yogurt) and he has to begin taking lactaid with every meal (1 before the meal, and then another one half way through the meal).

hopefully all of this will go a long way towards getting paxton a lot more comfortable!!

thank you all sooooo much for your prayers, support and encouragement!! we love you!!