November 6 - Day 29

Oh, how I feel that the days are getting longer and longer. Somehow, someway we find a way to push through our tiredness and crankiness but today was difficult for both me and Chloe. We were both very tired and fussy.

Chloe slept most of the day today recovering from her surgery. Surgery last night went well. Not that it gets easier but Reth and I move through the movements with a little more flow now that this is our third round of neurosurgery. So as our baby girl lay strong and brave, we treated ourselves to a nice delivered meal and enjoyed each other’s company. As we were finishing up, our neurosurgeon came by to tell us that all went well and there was actually nothing wrong with Chloe’s shunt – the valve was working and there was no blockage. Of course our hearts sank because that meant that no answers are clear. He went ahead with our plan, though, and revised the medium pressure valve to one that is programmable by a magnet and set it at a lower pressure. We hope that this will allow Chloe’s fluid to drain more efficiently and decrease the size of her ventricles. A CT scan will be done tomorrow to check its progress.

As far as seizures go, Chloe continues to have some short subclinical ones at random times with no external indications. The team will increase her medications tomorrow and hopefully find the right balance.

Therapy continues to go well. We take each day as a new day and praise Chloe for every little movement she makes. A little more stiff today during PT/OT, Chloe fussed a bit during her stretches but in the end was able to sit up a bit with our help and sat in her TumbleForm chair that is basically a soft reclining seat. Her speech and swallow therapy also continues but Chloe’s muscles are still weak. She was able to take 5 cc’s of formula today but the end of the week has come and we are faced with debate of whether or not to go ahead with the G –Tube surgery. The surgery will give her the nutrition she needs without a tube through her nose that can potentially be pulled out or cause her to aspirate, and will also allow us to move closer to a discharge date. It is very hard to think about another procedure but the time has come for us to make a decision. We pray that with our efforts this weekend Chloe’s sucking reflex will become stronger and stronger and we can avoid putting Chloe through this.

We ask for your prayers and positive thoughts to give Chloe the strength to keep working and improving over the weekend and to help us make the right decision for the next step.

Many thanks for your love and support,

Michelle, Rethier, Olivia and Chloe