Eventually things will slow down and I will be able to update regularly... I promise. However, by the time things settle down there will be no need for journal updates because everyone will know that Weston is back to being his healthy, happy self!
It was determined that Weston has (had?) a fungal infection in his liver. They started him on Diflucan liquid twice a day. He doesn't mind it. This past Monday he received his Venblastin for the first time in 5 weeks. His skin was starting to look bad again and the smell in his ears was back, too. Dr. W thinks it was just regression from being off the meds too long. They did give him a new chemo, 6MP, to take daily at home at bedtime. They also gave him penicillan for a possible ear infection due to the clog up of LCH in his ear canal. We started all these new meds (plus the steroids again) Monday night. All seemed well and good until about 1am when Weston woke up SCREAMING! I don't mean, "Mommy, I'm cold/ need a drink of water/ gotta go potty" type crying, I mean SCREAMING! For the next 5 hours I tried holding him, rocking him, tucking him up tight (that part was mainly to keep him from hurting me... he was kicking and hitting and scratching) and at some point Trev got up with him and we swapped out. At 10am we were back at the clinic with Weston looking very much like an abused child. He had fought with his covers, his night clothes, his pillow, ME... When he tried to get out of bed he couldn't stand up and fell over on his rocking horse leaving a huge bump on his head before we could catch him. Then I tried to sit him on the couch while I called the clinic and he got down and tried to walk and hit the tile floor. At one point, he was looking straight at me saying "I want my Mommy!". That was one of the only phrases I could understand!
At clinic, as the day progressed he seemed to get a little better with each passing minute. They ran blood tests to check his chemistry levels and even did an EEG with strobe stimulation to check for seizures (which came back normal, praise God!). Nothing was coming back unusual! So, they sent us home and said that none of the meds have these side effects, keep giving them to him. BTW, we did not see Dr. W that day, just one of his "associates". This answer was not good enough for me. I happen to be allergic to penicillen and so is my mother, so she and I looked into the possible side effects of the drug. (To begin with I thought it HAD to be the 6MP b/c he wasn't showing MY reactions to pcn.) All of his symptoms were on the list. Either under the allergy section or the OD section. Remember, he is already on an antibiotic. Trev and I talked about and decided that it was safer for him to miss a dose of PCN than to miss his chemo and we would run a little test. We didn't give him the PCN Tuesday night and the angel slept all night without so much as a whimper. Then, yesterday he got up, ate a GOOD breakfast (steroids....) and then laid back down on the couch, went back to sleep and slept until 1pm. When he got up he came out singing and looked at me and said "I love you Mommy!!!" at the top of his lungs!
We spoke with Dr. W this morning and informed him that we believe Weston is allergic to PCN. Trev and I are just starting to get caught up on sleep after that night (since we can't sleep for 5 hours in the day time as well!)
Another great point that I wanted to share is that yesterday Weston gave me the opportunity to witness for the Lord. It was a great moment! When we walk over to the school to get Emily (which we do every day its sunny) I usually talk with the crossing guard and some of the teachers. A few days ago we got to talking about Weston and his prematurity and now his illness. They asked about pictures, so yesterday I took the pictures from when he was born. It is one thing to hear that he was that small, and another to see actual pictures. In talking with them, one lady starting crying b/c I showed her what we call Weston's "angel picture" check it out at http://community.webshots.com/user/shilolb
It's under Weston and its the one where he is glowing. I told them the story of there being no lights and no flash, but when the picture was developed, Weston is glowing. When I told them that it was God's light surrounding our child, she started crying. She said that she had never seen a miracle before and had begun to think they weren't real. I told her that God performs miracles every day, we just don't always see them, but that I was honored and blessed to have been able to show her one! I pray that that moment renewed her faith in the Glory and Strength of the one true God.
I have always known that God has plans for our son. And I believe that Weston touched a life yesterday and his struggles have not been in vain.
