Laney

I am pretty sure this is what Laney has. Esp. the part about PFAPA. Her DR agreed. Unfortunately, there isnt much we can do for her. She is basically a very healthy little girl. She doesnt get 'sick' too often. Atleast not w/ colds, flus, stomach viruses, etc...This is not contagious, which is great. It just makes her feel like poo for a few days. It says on here that parents can usually predict when their child will get a fever/when one is coming on and that is so true!! I hope she grow out of this soon. I just feel so bad for her when she gets these fevers.

Infectious diseases - Periodic fevers - Children's Memorial Hospital (Chicago, IL)

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My poor girlie

My little Laney is sick. She has a fever. No other symptoms. She has been getting this fever thing since she was about 6 months old. It is always just a fever. And when I take her to the DR they always tell me it is just a virus. Like yesterday...Dr. Kirby said it is just a viral infection because besides the fever she had no other symptoms. The last time she got this was on May 21st. So, it has been 9 weeks. This is the longest she has gone w/out getting it. However, back in May when she got this, I was so concerned. I took her to the DR. This time I had Dr. Sirolly. I told her my fears of Laney getting this fever, literally, every 4-6 weeks on the dot, like clock-work. And there has been a few times where she has only gone 2 weeks between fevers. It didnt seem normal to me. Kayli has not been as sick as much as Laney has been and Kayli is 5. Laney has had more fevers, I think, than I have had in my 33 years. Finally, this time, I got a DR who was going to do something about it and not brush it off as a virus and tell me, "oh it is normal for kids to get 10-12 colds a year." Since Laney had no other symptoms and such a high fever for 2 days at this point, she did a urinalysis. And sent her for blood work. Everything ended up coming back pretty normal. She was a bit anemic but she told me that iron supplements would do the trick. And she also said that something was elevated from her Sed. Rate...but that was due to the fever and was normal. She wanted to repeat the blood work in about 8-10 weeks. I was going to take her for her blood work but now I have to wait since she is sick right now. Dr. Sirolly did mention to me that she could have something called, Periodic Fever Syndrome. But there isnt really anything you can do for that. Hopefully this is something she will grow out of. I hate seeing my poor girlies sick. I know it is just a fever but it bugs me. Last time she had this, her fever got up to 104.5 the one night. So scary! I will admit, this time she doesnt seem as sick. When I give her meds. Esp. during the day (yesterday andso far today) she acts like she isnt even sick. She is running around, screaming, hitting Kayli, pretending to be Tinkerbell. I hope this time it passes quickly. I know she hates feeling sick and I hate seeing her sick. Also, I do need to go to the gym. I feel so disconnectedwhen I dont get to work out and have 'me ' time. haha!



8am today. She felt terrible! :(


1 hour later after Motrin.

outside and slushies

Today we had the girls outside for a little while Matt was shooting paintballs at the target he made. haha How ghetto is that!? Anyway, it was a fun eve. for a Sunday. We ended up taking a walk to Turkey Hill w/ our friends a few houses away to get slushies for all the kiddies.



Laney peeking


dancing


again...dancing


goofball

Kayli and Andrea enjoying their slushies

all the girls realaxin over a cold one

Best Friends Forever

swimming

Yesterday my mom and I headed over to my Aunt and Uncles house to visit and to take a dip in their pool. I love going to their pool. We dont get to go too often since Laney still takes a nap and I go to the gym during the week. But on weekends we find the time and take advantage of the pool and good company! :) Both girls really love swimming. Kayli can swim w/ no "floatie devices" as she calls them. But she loves to use them anyway. Laney also loves all things that keep her a-float, all at the same time (as you can see in the picture below)!

Down in the dumps

This morning my mom called me as she left the hospital from visiting my dad. She said she talked to the DR. Well, actually it was the intern of my dads DR. (DR. in my book either way). He said they were sending my dad home in the next few days. His PICC was staying in so he could be fed that way (TPN). Also they will continue his antibiotics via the PICC too. He has a vacuum like thing attached to his abdominal incision (the part that was previously packed w/ gauze) to suck out all the infection and to heal it faster. This link describes it. My mom was not too happy they decided to send him home this quickly w/ all his attachments. She started to cry and just said what was on her mind. She has to work. There is no way around it. She feels terrible having my dad home alone all day. They had visiting nurses lined up but she only had a few days left due to the insurance. And my mom is not a nurse at all. She knows she couldnt handle changing all that stuff herself. Can you imagine emptying a canister filled w/ bacterial puss like infected smelly fluid that came out of someones gut?! Gag-o-rama!! She even went on to say how we dont even have a 'diagnosis' yet. No one has told her anything or what's to come or what they will be dealing w/ down the road, etc... She told me the intern just looked at her, shocked, and said, "m'am, your husband has cancer." There ya have it. Cancer! It is so different when you hear it then it is just worrying if you/someone has it. It was my dad's biggest fear. Obviously, we were sorta of expecting it to be cancer. A large mass in your colon isnt promising. Esp. w/ his family history. Literally, everyone on his side of the immediate family dealt w/ cancer. His brother. His father, who later died of Parkinsons disease. And his mother who lost her battle w/ recurring breast cancer. The intern explained that the mass was so big that my dad will need chemo/radiation before he has surgery to shrink it. It most likely started growing as a polyp maybe 10 yrs. ago. It does not seem to have spread to any other organs. His CTscan showed his liver and lungs were clear. That's a good thing (to me atleast). Intern told my parents that my dad will not make it if they do not remove it. They have to wait until the infection is cleared up to start the treatments. They are hoping in about 3-4 wks he will be ready to go. However, like I said in my previous posts, my dad is so weak right now. Hence, the TPN! And right now, he most likely could not handle anything else...no surgery or treatment. My dad has a chance to make it through this, though. But he needs to get healthier and gain weight. Mr. Intern even said that he has a hard road ahead if him and they are there to try to get him past all this and healthy again. They need his help, he NEEDS to be a fighter. He needs to stay strong and positive.

After they do the treatments they will do the surgery to remove it. Hopefully the chemo/rad. will do it's job and shrink the sucker! Hopefully my dad can handle it! At this point they do not know if he will need more treatments after surgery. They are going to remove lymph nodes too and check around for other signs of cancer while they are in there. Again, they said his CT scan showed that it didnt seem to have spread to them (or anywhere) but they are doing it as a precautionary measure. If they remove this mass, my dad has a good chance. That makes me so happy, relieved and full of joy. I am just scared to death he isnt strong enough for this, physically. If only you saw him... nothing but skin and bones.

As for now, my mom was able to get him into a home care place for about a week. More if he needs it. Not rehab or a nursing home, so to speak. It for 'short stay' patients who do not need the hospital but really arent ready to be on their own yet. Thank GOD for that. It makes less stress for my mom and suprisingly, my dad was OK with it. He will most likely be leaving the hospital on Monday and going to this new place. Sorry, I forget what it is called?! This is all I know for now. I will keep my blog updated for my small amount of readers who want to read about it.

Thank you for all your well wishes and prayers. This is a very hard time for our family. My Aunt dealing w/ her diagnosis of GBM back in April and my dad w/ his new diagnosis of 'extensive sigmoid cancer'. I hope and pray for both of them every single day. I love them both dearly. They are staples of my life. Whatever comes their way I wish them peace. I want them to both know they are so loved by many. And tons of people are praying for them. Hang in there guys! Esp. you dad...Sam already has the concept. Be strong for yourself and for you family. Love you! xoxo

Good ol' daddy-o

Tonight my mom took my dad back to the hospital. When he had his surgery, on Tues June 30th, they didnt sew him up. The packed his incision. I am not sure exactly why. I think it is b/c they are planning on going back in (to remove the mass on his colon). He has been home since last Wed, July 8. So, 1 week. He has had a visiting nurse come out and change his bandages every day. The past couple of days I think it has been oozing. Today while I was there mowing the lawn he showed the bandages to me. I did see the gauze that it was packed w/ had a light brownish color to it. My mom ended up calling his DR when she got home from work to see if this was normal. Apparently it had a very bad odor to it and it was puffy on the one side too. YUCK! His DR. said to pack a bag and go to the hospital. My mom took him this eve. he was admitted to the ER as an emergency so he did not have to wait. They did cultures of the incision. And tonight they are doing a Catscan w/ dye to see whats causing the oozing. They think it may be his bowels. Ugh, terrible! He may need another surgery. If he does get another one I am not sure they will remove his colon mass or not. He is so weak. Literally has no energey, ever. He weighs about 150lbs. He looks terrible! I have never seen my dad this thin. And my mom said since she has known him (40 yrs) he has never looked so skinny! There is skinny and there is 'sick skinny' and he is beyond sick skinny. Although, I do not understand why they think, IF the mass is cancer, that will help him gain his strength back. It's like a no win situation. Not healthy enough for surgery but not healthy enough to keep it in there either. I can honestly say my hopes are not high. I feel so bad for my dad. He is so scared!! Some people would say, it is his fault b/c he put it off so long. And I see that perspective. But just imagine if you were in this situation he is in. No matter how or why you got there it would be scary! I know I would be scared to death. My mom is scared for my dad. I am also scared for my mom. Everything is so unknown right now. But I have a feeling actually knowing more wont help the situation. What else could a mass in his colon be? Not to mention on his sheets he has at home for the nurses to sign, under diagnosis, it says, "extensive sigmoid ca."

Please keep my dad/family in your prayers if you think of it. They are so so needed right now! He may not have physical strength, but he needs spiritual strength to guide him through this time. Like my mom always says, "your dad never claimed to be a big-mocho, brave man." He may have not gone to the DR in aeons but he is a son, a friend, a father, a husband, a grandfather, an uncle, a father-in-law, a brother, a cousin, a nephew...he is very loved. And we dont want to have to miss him too! I love you dad! I hope you can make it through this...I am praying for you, as are many others.

Potty?

Today is the day I decided we (I) need to start getting Laney more acquainted w/ going to the potty. She has sat on it several times, starting back before she even turned 2. I do not think she ever did anything in it though. She plays w/ the toilette paper like crazy and just likes to sit there and look at books/magazines. It seems when she really has to go, she wants to get off of the potty and asks for a diaper. I put "pull-ups" on her today. She was so very excited she did a little dance and everything. She even told me to take her pic to show off her beautiful pull-up! I do not know how smooth this will go. But I will keep ya'll posted! Wish us luck!



hey everyone!!



Looky!!

shakin' the booty in the pull-up