Carly started dance class today. 

They had a halloween party and got to dress up.

I think she looked so cute.

She loved the class and I can't wait for her recital in June.

(please excuse the quality of pictures, I only had my cell phone)

Carly went for a little drive disguised in her purple wig!

Surgery day

I never got to finish updating yesterday. I never found the time to. Dr. Moss came to the waiting room at 6:20PM to let us know that Carly was out of surgery and that it went well. He replaced the shunt and tubing completely and placed a new programmable shunt with a siphon control valve. The shunt was partially obstructed to it was very good that we went ahead with the surgery. Before the surgery he said that if it was his granddaughter or daughter that he would not do the surgery right now. I still had a feeling that something wasn't right and we decided to go ahead with it. I asked him after if my instinct was right and he said yes, definitely. See, mom's know best!!! We went to go see her and let me just say that she looked so much better than her first surgery. She was OUT! She didn't actually wake up until almost 9 and when she did she was not happy. She was trying to pull out her tubes and IV. We got her calmed down and gave her a sippy then she threw it all up. Daddy had to go home to the other two kids so I stayed the night with her. It was pretty uneventful. She actually slept pretty well and I got a little rest. At 5AM they came and got us for CT. We went back to sleep after CT and after being cleared to leave we headed home at 3:30PM. It is so great to be back home although she has been little miss cranky pants. Its time to get back to life as usual and hope that things improve for Carly. We have been truly blessed by the amount of love and concern that our family, friends and complete strangers have shown for us and Carly. Carly's life is nothing short of a miracle and we feel blessed to be her parents. 

 Waiting patiently...

Now not so patiently..."I'm HUNGRY!!!"

 Knocked out with versed heading to surgery

Finally seeing Carly after surgery

Splotchy red face
************************************************************************

5:20PM
She was finally taken into surgery at 4:45PM, 4 hours late! Surgery got a bit backed up today. They are doing a complete shunt replacement and should be back for 2 hours.

11:20AM

We are at the hospital now waiting for Carly to go into surgery. Please keep my little girl in your prayers. I will update later on today.

Rheumatology

Carly had her rheumatology appointment today. Her doctor was very nice.

We talked about Carly's fevers and he looked at her blood work.

Based on what he knows he thinks she has Marshall's Syndrome, also called

 PFAPA (periodic fever, aphthous stomatitis, pharyngitis, cervical adenitis) syndrome.

I have some more lab work that needs to be done so I'll wait for a couple of weeks after surgery and get it done.

We see her doc in 2 months and during that time I have to keep a log of all fevers.

At least this gives us an idea of what is going on. Seems right and fits her symptoms.

While we were waiting for the doctor, Carly and I had some fun taking pictures.

I sure love this cute girl!

Torture

We were back in the ER today. Carly woke up this morning crying. I went into her room and she was laying in throw up and had a fever. I felt horrible. I have a monitor in my room but I never heard her crying through the night. I've been so exhausted lately that if she was crying I didn't hear her. I hope she hadn't slept in it all night. Her temp was 103. I decided to not give her anything for it since I feel like nobody believes how high it gets. Her neurosurgeon is at Cardon Children's but because the hospital is so new that there aren't very many specialties there yet. Her pediatrician wanted us to go to PCH so we could have further testing. So off to PCH we went. By the time we got there her fever was 104.8. They checked her blood, urine, ears and chest x-ray. Everything was normal so once again we were sent home. This time instead of saying it was a viral infection they just said it was a fever of unknown cause. Well that was helpful. She see's rheumatology on friday. Hopefully they can shed some new light on what may be causing her fevers. This is just so hard. I hate taking her to the hospital and feeling like I'm torturing her. I hate watching her be so scared. I hate holding her down while she is kicking and screaming. I hate this! I don't think I can handle much more of it. Hopefully this wont stall her revision scheduled for next wednesday. We'll find out what neuro thinks tomorrow. Fingers crossed! Although I didn't get any answers, I made a new friend who's daughter has hydro and that in itself is considered an answer to my prayers. She also introduced me...ok, friend suggested me, to her friend who also has a daughter with hydro. I finally have someone to talk to! So, Carly is in bed finally. I let her watch tv in my bed and she fell asleep. Let's hope that tonight and tomorrow are better than today!

(ok, so hopefully the ranting will end soon...no promises but it has to get better sometime, right?)

My angel

I went out of town for a week with my sisters. These are some pictures that my mom took of Carly while I was gone. Isn't she CUTE!!!

Carly woke up with a fever again today. I called neuro and they said to take her to her pediatrician. I got her an appointment and we headed in. They couldn't find a reason for her fevers too. But her pediatrician started throwing around new ideas and new specialists to see. She wants Carly to see a Rheumatologist. She said something about periodic fever syndrome. She wants us to get back into genetics to see if fevers have anything to do with chromosome 15 duplication syndrome. Maybe something is wrong with her hypothalmus? Maybe she has a immunodeficiency disorder? I'm going crazy. I'm seriously going crazy! Oh wait, I think I've already gone crazy!!! So here I am, wondering what to do. Any ideas?