Sunday, March 20, 2011


We made it home yesterday.  Our nurse was great at reminding the doctors if they were going to discharge Shelby that we REALLY needed to hit the road by Noon - Scott needed to get home to sleep for work at night and I had a thirty-one party at 2 p.m.  We made it just in time!

Shelby is doing great, but my Riley is still not feeling so great.  No fever since Friday, but her stomach still hurts :-(

Tomorrow Shelby turns 9 - unbelievable!  I'll post more then.

(P.S.  Please pray for Emerson - her blog can be accessed in the right-hand column.  Part of her transplanted bowel had to be removed this week and the remaining part has perforated twice!  She is so sick!  Please pray healing prayers for her.  Thank you.)

Friday, March 18, 2011

It can change SO quickly!

7:57 p.m.
Shelby was admitted.  They do not have her on any meds, but wanted to watch her overnight.  Her fever is finally down to the 99-range and she has perked up quite a bit.  

Riley is not feeling well, either, but they don't have the same symptoms!  Scott met my parents in Elgin and did the Riley & Avery exchange.  He is back here with us for the night in the hopes that she gets sprung in the morning.  

9:05 a.m.
Shelby is undergoing skin patch testing this week.  Tuesday we went to Northwestern, she had the patches put on her back, went to Children's and saw her hepatologist & surgeon and had an abdominal ultrasound to check on her shunt.  We got a good report that day.  Her wbc & ANC still aren't good, but her spleen still felt smaller.  Scott was not feeling well that day and went to Immediate Care and tested positive for strep.

Shelby tolerated the skin patches well and when they bothered her, Benadryl did the trick.  All 5 of us came in yesterday, the skin patches were removed and we set out for some Chicago fun as you can see in the picture album.


Last night Shelby started complaining that her tummy hurt.  She did not sleep well and around 6:30 a.m. I felt her and she was warm.  Her temp was 100.8 - not bad, but with the only symptom being tummy pain we headed over to Children's ER (we stayed at the Kohl's House last night).  Here her temp has spiked to 102 and she is NOT my Shelby.  She is crying over everything.  The exam, putting on Emla....NOT Shelby.  She doesn't even want to play her DS!  She is resting right now.  Like I said, NOT Shelby.  So far, her strep test came back negative and they are waiting to hear from her docs here on what tests to run.  :-(

Prayers please...

Tuesday, March 01, 2011

Since the flu...

Shelby did get over the flu just fine.  In fact, Riley & Avery seemed to deal with it longer than Shelby.  Shelby's white blood cell (wbc) count and ANC (absolute neutrophil count) did not like the flu and decided to take a HUGE nosedive.  How did we know, you ask?

Shelby's teacher called right after school last Wednesday and said Shelby just was not herself that day.  She was very concerned.  Riley had some concerns about Shelby's behavior, too, as they had spent a lot of time together while sick.  I took her immediately for labs to get her ammonia level checked and, on that lab order, are a bunch of other tests.  So we found out that her ammonia was a bit more elevated and her wbc & ANC were bad, bad, bad.  We kept her home then until today when she had labs repeated.  Those numbers have improved enough for her to go back to school tomorrow - phew!

Her ammonia is a bit of a mystery.  One doctor wanted to put her on a strong medication with not-so-great side effects because when I called asking what to do they interpreted that as "PUT HER ON MEDICATION!"  Yeah.  That isn't what I was asking.  Her liver doctor is now managing this and saying to keep a log of her behavior between now and clinic and we'll talk more about it then.  Seems like this will be something Shelby will have to deal with for quite a while and we'll just have to make accommodations.  {{{Sigh}}}

March is a super-busy month for doctor's appointments in Chicago.  She has 2 this Friday, 3 on the 15th, 1 on the 17th and 2 on the 18th.  Can you believe we go there so much and things are relatively "calm" for her?  It would be so nice to have a big center that takes care of all this right here in Rockford...I know, I know, a girl can dream, right?

Please pray for our little friends Emerson and Aiden as they are walking such tough roads right now.

(Also, I became an Independent Consultant for thirty-one gifts.  I am very excited about this new opportunity & would love the chance to introduce you to the great products we sell.  Even if you're out-of-state, we can work something out.  Shoot me an e-mail @ if you are interested or visit my thirty-one webpage.  Thanks!)