Parker update March 7

Today was a bit more challenging for us.

Parker started off the day getting his IV back. He has been maintaining a high temperature and they haven't been able to determine the cause. Previously they thought that this was potentially a side effect of the withdrawal but they are now looking at the possibility that this might be related to the catheter infection he had earlier in the week. We are reminded that medecine is not an exact science but are grateful that they are working through many possibilities.

They put the IV in the bend of his right arm just in case they need to push heavier medications. This also means that he has no ability to flex that arm and is basically leaving it limp by his side.

He also has had very liquid stool for the past 24 hours. This can either be due to a continued purge of medication or a side effect from the same problem as the fever. Regardless, he does seem to be gaining some weight and is back above 8kg.

We brought a myriad of new toys for Parker today but he seemed a little distracted and despondant. He tried to lift a couple of them but became bored quickly as he only had functional use of his left arm. He does seem to be doing better holding his head up-- especially forward. When he moves it to the back it still flops and he whimpers softly as his eyes tear up.

We did find out that the strain of pneumoccocol meningitis bacteria he had was not covered by the vaccines he took. This is re-assuring in that this is an initial indication that he does not have an immune deficiency.

The doctor said that Renee could try breastfeeding this afternoon. It is slightly more complicated than feeding him a bottle in that they want to know what his intake is. We have to take off all his clothes and his diaper and weigh him, then feed, then weigh again. Possibly because of the stress of the situation, coupled with Parker not remembering how to properly latch on, it didn't go that well and in the end we decided to go back to feeding him with a bottle.

We have had a couple of big cliffs to climb recently but at least we had an idea of where the top was. The slow, steady rise where the horizon is always ahead but you can't tell where it ends-- that is a different and more difficult challenge.

I look at our four girls and wonder how they might be affected by our absence. This morning my beautiful 7-year old daughter Abby challenged me to a game of head-to-head Mario Kart on the Nintendo DS. We played for 15 minutes and it made me remember Saturdays where our biggest challenge was deciding whether we would go to the park or to a movie or just sit home and play. Today I felt a guilty for spending the 15 minutes I did, and then more guilty for not spending more.

Days like this we question when we will return to some sense of normality -- but also wonder what the evolution of normal will be.

Days where the walls of the waiting place seem a little closer together and home seems a little farther away.
Days where we wonder if Parker is at a plateau, or fear that he might be regressing -- wondering whether this is where we should start planning on how we will manage our new reality.

We knew there would be days like this, where there would be hiccups or progress would be slow or minimal, I don't think we anticipated how hard they would be.

We are drawing strength from so many of your e-mails and calls. We are also forcing ourselves to focus on what we know, the blessings and faith that we have been given; look to the horizon and the light coming over and then take up our load and press on.