Compare The Pictures! It Is AMAZING!!!

November 2008

 

February 2009

Read the post below and then look at these pictures.  Less than 3 months apart, and you can see the difference, right?! 

 Isn’t it AMAZING?!

….IT IS GOOD!!!

February 10, 2009 — We leave for Birmingham to check into our hotel.  We have found a new hotel to stay in that offers a Children’s Hospital discounted rate, if you are having a procedure or an appointment (the catch is you have to have a note on Children’s Hospital letterhead stating that you are having said procedure or appointment).  Now, granted the rate is not a swell deal like it was in 2004 (we stayed at the same hotel for a mere $25 for a night!)…the rate was $79, but compared to the regular rate of $119, it was a decent hotel for a decent price.  We actually checked into the hotel earlier than we normally do, and found that it gave us some time to rest before getting out for dinner and some fellowship time with our adopted family, the Key’s.

 

Kimberly & Thad

We met Thad and Kimberly at our usual spot, Taziki’s in Mountain Brook.  We love to eat there, and thankfully, so do Thad and Kimberly!  They got their usual — chicken roll-ups, Mojo had them, too, Button Boy had the children’s grilled cheese (which amazingly enough, I had to force feed him) and I had a wonderful Basil-Feta Pita–YUMM-O!  We had wonderful conversations…catching them up on what is going on in our lives, and hearing what is going on in theirs.  Button Boy played on the booth bench we were sitting on….played on the bench to the table in the middle of the room…and pretty much couldn’t sit still for the entire dinner…he wiggled and squirmed and giggled  and grinned…and was typical Prednisone happy boy.  We then split up–girls in the van withButton Boy and guys in the deadly 4-runner (with Thad driving –a Yugo would be deadly!) and off to The Summit and Barnes & Nobles — another usual spot to spend a few hours of fellowship with the Key’s.  It is a great place to let Button Boy roam in the children’s area (with the girls keeping watch while sitting and sipping our Starbucks and chatting away!) and to let the guy’s talk their “guy talk” in private (private = the history section or religion section….I think one time we found them in the reference section — but they got busy talking and walking and got lost!). 

Once back at our hotel, we allow Button Boy to finish watching his Scooby-Doomovie on the laptop before getting him ready for bed.  We have a room with a king size bed so we can all snuggle in for the night…little did I know that meant watching one of Button Boy’s and Mojo’s favorite t.v. shows…I’ll give you one hint —  DOH!  Yes, I had to suffer through the Simpson’s.  I guess it wasn’t that bad….yeah, it was!  Luckily, we were all tucked in and asleep before 10:00pm.  The morning was going to begin early!

February 11, 2009 — Up at the crack of dawn….5:15am!  UGH!  It was not meant for anyone to be up and awake before the sun rises.  My daddy would argue with me, but he has always been an early bird.  I am always first out of bed, usually because once I wake up, I can’t get back to sleep, but on mornings like this it is because I am way too nervous about oversleeping!  We get to Children’s Outpatient Waiting right at 6:30 (okay, really it was 6:33, but they understand what it is like with a nervous child). 

This morning we actually don’t have to take Button Boy to the lab for pre-op.  I’m not sure why, but am certainly NOT complaining!  We get to our room, get Button Boy into his gown, and get him in bed with a blanket, a Scooby-Doo video, and snuggles from Mommy….when the nurse comes in, she comes in WITH the Anesthesiologist.  WHAT?!  That is unheard of in any hospital!!  Of course, the Anesthesiologist was already aware of Button Boy’s history, but made sure nothing had changed, and we made sure they were aware of our last procedure and the difficulty that he had afterwards with nausea.  Dr. Saeed had told us in November that Button Boy really needed to have Versed to help relax him before the procedure…and boy, did he relax!  He chuckled at the nurses and Dr. Saeed, and never got overly anxious — even when we were standing in the door of the procedure room!

The procedure seemed to take much less time than it did the two previous times.  I had enough time to go down to the Starbucks in CHS (yes, there *is* a Starbucks in Children’s — YIPEE!) and Mojo to go to the cafeteria to get his overly large breakfast.  Dr. Saeed actually got to our room before Mojo got back upstairs!  I have seen Dr. Saeedhappy before, but he actually looked GIDDY when he came into our room!!!  He was literally bouncing into the room!  He had the pictures in his hand…and I could tell from his face that the results were better than he expected!  The pictures showed smooth surfaces in Button Boy’s esophagus and stomach…and a beautiful pink color!  (well, his stomach had a gross yellowish color, but it was the discoloration from the Versed)  I could feel a lump in my throat!  I was just amazed at the difference since November 19th! 

OH MY!!!

My very first question to Dr. Saeed was….HOW DO WE COME OFF OF THE PREDNISONE!  (not that I was ready, or anything!)  He immediately let me know the way to wean Button Boy from the Prednisone….then he said that the actual biopsy results would be back within a week and he would look at the results to determine when we would have another appointment and the probability of another endoscope.

Tuesday, February 17, 2009 —  I couldn’t stand waiting any longer!  I called Dr. Saeed’s office today to find out what they knew about the biopsies….the office called about three minutes later!  The nurse said that the results said ZERO EOSINIPHIL CELLS!!!  Yes!  No white cell accumulation!  The Prednisone did exactly what Dr. Saeedhoped it would…even though the side effects were horrid, they might have actually been worth it to know that the white cells are gone!  Okay, breathe!  I can breathe again!!

Once I was able to catch my breath and think, I did have two questions for the nurse to ask Dr. Saeed.  One, when is our next appointment?  Two, will we have to schedule a follow-up endoscope to see what the eosiniphil cells do without the Prednisone?  The nurse, who is always a blessing to talk to, said that she would ask Dr. Saeed and call me back as soon as she could.  She called back within 10 minutes!  Our next appointment is in June, and we just need to keep it….unless Button Boy complains about his throat or stops eating again.  As for a follow-up endoscope after no Prednisone, it is likely, but that will be discussed at our June appointment, unless we experience some problems.

ZERO EOSINIPHIL CELLS!!!!  breathe, breathe….

Praise God!  He is so good!

Button Boy

 

Egg-Free Find

I am now on the look out for simple…any simple food item that does not contain any eggs.  NO EGGS.  None.  Nada.  Zilch.

Now, enter CherryBrook Kitchen.  We found them at Whole Foods in Birmingham.  We have made a few of their products.  Girly Girl and Button Boy like them.  Like them a lot.

If you have a child with a dairy, egg or peanut allergy, you MUST try this brand.  Go to their website and read Patsy’s Story, I think it will make you appreciate the standards this small company has in keeping food allergy sufferers.  We support small businesses, being a small business family.

Remember to look for these in a store near you.

Major Food Allergies, Please Read!

SPEWD free

Please go read my friend’s blog, SPEWD free, about her son’s reaction to children eating on a playground.  Button Boy’s allergy is mild compared to her Little J’s, and it scares me to think what my life would be like if his were this severe.

Prednisone, I am NOT happy!

Buddies!

 

After Button Boy’s last endoscope, the results were not as promising as we had hoped.  The accumulation of white cells that were creating the discomfort in his throat had diminished, but not to the point that Dr. Saeed was ready to stop all medication.  Button Boy began taking Prednisone about 2 1/2 weeks before Christmas.  We began noticing that his cheeks were beginning to look like a chipmunk…cheeks filled with nuts!  We were not experiencing what we had really hoped to see, which was a dramatic increase in appetite.  He was still not eating very well.  Then, all of a sudden, we began to lose our sweet little boy, and see that he was being taken over by a child who was having some pretty severe mood swings….he wasn’t dramatically violence, but when he was getting angry he was balling up his fists which is something we have never seen him do.  He wasn’t becoming giddy or depressed, but what we did see was the inability to recover from sadness. 

For example, Button Boy LOVES his school.  He attends a Montessori method school in town (his sister also attended there) and loves his teachers and his classmates.  The week before school was out we began to see Button Boy become clingy when I dropped him off in his classroom.  His teacher commented to me that it took him over an hour to settle down and participate in line-time and lesson time….this is very unlike him…he has been very active in his line-time, singing and participating in lesson introductions…he has also been very active in lesson time with puzzles and math lessons, and is becoming more interested in reading and writing.  The fact that he was not recovering from being left in the classroom was very disturbing for me.  We also began noticing that he was becoming more clingy at church and at home. 

We became concerned enough to call Dr. Saeed’soffice and speak with them about the trials we were experiencing and our concern that it could be the side effects from the Prednisone.  We have been blessed beyond our understanding withthe medical professionals that have been taking care of Button Boy.  As soon as I spoke with the nurse, she contacted Dr. Saeed and they made the decision to cut his dosage in half instead of taking him completely off.  Taking him completely off the steroid would do several things….it would cause a need for the next endoscope to be moved to earlier to see if the minor amount did anything to effect the accumulation of white cells….it would mean the need to wean him off of the steroid because his little body has already absorbed enough to cause him to have withdrawal symptoms when he has missed only one dose…it would also increase the chance of the necessity of trying the six-step elimination diet that I am scared to death of!, I only have so much organization in my life, and I am unsure of the discipline I have to make it through so many months of eliminating Soy, Wheat, Egg, Dairy, Nuts, and Gluten, I mean, it hurts just to think about it!…I would do it, but oh!  it would hurt!

So, we have now been almost 2 1/2 weeks on the lower dosage of Prednisone, and Button Boy went back to school.  His ability to control his emotions is still a struggle…he seems to have a difficult time recovering from disciplining and getting upset at something.  He is still having a little trouble with “clinginess” at church — school is another story, we’ll see how it continues to go.  His appetite *has* finally increased.  When we stopped at the Varsity on the way to and back home from NC, he ate 1 1/2 cheeseburgers…EACH TIME!  That is HUGE for this young’un!  He is also wanting to “nibble” all day long, which we expected, but it has finally kicked in!

We are looking forward to seeing Button Boy’s continued progress….until March 4th….and then we’ll be hopeful to see the Prednisone GO AWAY!!!!