December 8 - Blythedale - Day 19

Two months...

It's still a hard reality to stomach. It still feels like a nightmare and we still wish and hope we will wake up one day to find ourselves back at home altogether. Will we ever wish any different? Probably not.

We try everyday to keep moving forward and stay strong for our girls. Chloe has had an exciting couple days this week. Towards the end of last week, her speech therapist began experimenting with different smells and various flavored oral stimulation tools to observe how Chloe reacts. She seemed to enjoy lemon flavored swabs and showed great movement and coordination of her lips and tongue. Yesterday, we attempted her first taste with rice cereal. Before getting sick, Chloe had been eating all cereals and purees and thoroughly enjoyed food so this was very exciting. At first, Chloe played with the mush and cupped her tongue as if she were searching for a bottle nipple but in the end was fairly successful in accepting a small spoonful of rice. She demonstrated a good swallow and seemed to like the taste. This morning, we tried again but were not as successful since Chloe was much more tired and agitated but she was still accepting the idea of food so we are headed in the right direction.

Another positive step we have taken is a change in her seizure medicine. Last week, Chloe was put on an EEG to monitor her brain activity. The electrodes were only placed for half an hour but the final report showed no seizure activity in the short time and her blood levels came back with good numbers. The neurologist here was able to take Chloe off one medicine, Topomax, and increase another called Keppra to make up the difference. Keppra has less side effects and is a good medicine for long term use. Starting today, we are also lessening, very very slowly, Chloe's Phenobarbital. This drug is her strongest seizure medicine and the one with most side effects and not great for long term use. It is difficult to wean a child from this particular drug because it needs to be done very slowly so that it will not induce the chance of seizure nor increase the chance of withdrawal. Tapering off Chloe's medications is a bit of a guessing game because it all depends on how her body reacts. We are closely monitoring her alertness, movements and behaviors and hope and pray that she continues to do well with the adjustments.

Physically, Chloe continues to build strength. She shows a little more control of her body each day, though we still have our battles of crying and protest. She is still healing and trying to find peace with her body but slowly, slowly...

An update on Olivia:

We have to say that we are so proud of Olivia. In these past two weeks, we have not heard her complain. Don't get us wrong, she cries for whichever parent she is not with and cries for her sister - she misses her family being together but what three year old wouldn't? But, what has stuck out to me the most is that she is really happy to be visiting her sister at the hospital, being with her at 'school' and walking around to see the different classrooms and therapy rooms. She has not asked any questions about the different chairs or toys or pointed out how people look different. It amazes me! I've been waiting for her to approach the topic of differences but she has accepted this world as a norm completely on her own and I am proud of her. I'm sure the questions will come at some point but if you could see how she lovingly and very proudly keeps Chloe company and plays with her on her mat or follows next to her stroller without a thought in her mind, you too would be amazed. The only time she has ever pointed out something is when she called one of Chloe's trial strollers a 'funny stroller' but that was only because it had a polka dot canopy that stood up high unlike other strollers. The canopy was the only thing that stuck out to her, not the wheelchair part of the stroller. And to put this into perspective for you, she calls any car going in reverse a 'funny car' so really she's not pointing out much.

Like we have said (and have been told) a number of times, children are very resilient in more ways that we can ever imagine. Reth and I have been strong but our girls have been inspiring.

Much love and thanks,

Michelle, Reth, Olivia and Chloe