Sunday, July 25: Update

We took our first walk tonight around our neighborhood with Claire since we’ve been back. Claire watched the sky and flowers while Heidi, Autumn and Esther ran through the sprinklers. We enjoyed getting out of the house and watching Claire observe her familiar surroundings. It was a nice cap off to the weekend.

Claire has settled down a lot since she got home. She wasn’t able to fall asleep at the hospital while any activity was occurring in her room: that has changed at home. Claire has fallen asleep twice in the living room while we were playing games or watching movies. She has been much more calm and collected, spending significant parts of the day just watching and observing us and her surroundings. She is also sleeping very well. Claire fell asleep last night at 8:30 PM and woke up at 8:00 AM. She didn’t wake up at all in the night and had an easy morning with plenty of time to wake up.

We’ve spent a lot of time breaking in our new therapy equipment with Claire. We like the new toys and how they enable us to work her out. Claire doesn’t share our enthusiasm. She has been doing well with her sessions, however, she still doesn’t care for the exercise monotony and strain. Despite her dislike for the work, she continues to work hard. She is showing more improvement and flexibility along with decreased rigidity. We are excited to see how well she does at her new therapy sessions.

Those sessions begin on Tuesday. We solidified our outpatient therapy schedule on Friday. Claire will be doing therapy three times a week for one and a half to two hours a day. One of the sessions will include pool therapy since we saw such great results while we were at OCH. This week will give us the opportunity to meet Claire’s new rehabilitation team. We are eager to grow our support group and have them meet Claire. We’re excited for this next step.

We continue to educate ourselves and plan for Claire’s recovery. We are reading the Glenn Doman book that one of the commenters recommended and are planning to use it as a template to develop Claire’s at home rehab program. We believe that Claire is able to bear more intense therapy than the professionals are able to predict: we’re with Claire all day every day and see her more alert than he doctors do. Her outpatient caregivers may not see her at her optimal time and we want to make sure that we’re being as proactive and aggressive with her care to maximize her recovery. We will be discussing this with her new therapists and soliciting their insight on Doman’s methods.

It’s been a busy weekend. We are getting glimpses of what our new routine will be like, and still trying to recover from the energy depletion the last eight weeks. We thank everyone for the support and thank you for your continued prayers and hopes. I will continue to update the blog on a daily basis and hope big changes are coming in the next few weeks and months.

Saturday, July 24: Update

Claire was scheduled to come home on Tuesday, July 27. We brought her home yesterday instead! We decided not to post about it yesterday because we had someone coming in that we wanted to surprise. It was a surprise, so mission accomplished.

Claire was discharged from OCH yesterday morning at 10:30 AM. We’d made the request for an early discharge on Tuesday because there was little point in staying through the weekend: the extra four days would be invested for only a couple of hours of extra therapy. We felt that getting Claire home would be much more therapeutic. The Care team agreed.

We also kept the news secret from Heidi and Autumn. Both girls were speechless when the front door opened and Claire entered. Autumn gets embarrassed when she is overcome with shock and retreats from those situations. Heidi didn’t have anything to say for 10 minutes. Her Aunt Krissy asked her if she was happy. Heidi just smiled and said, “Yes.” Seeing their reactions was a great payoff.

These past two days with Claire at home have been busy. We got some more furniture to organize the girls’ room and spent a lot of yesterday finding homes for their collective belongings. Trips to Sam’s Club and Vitamin Cottage were in order to get some much-needed supplies: Huggies diapers and a pill crusher were the most important. OCH used Pampers diapers for the duration of our stay. We don’t like Pampers. We are walking spokespersons for the absorbent power of Huggies. It makes a difference! The pill crusher is for Claire’s meds. Three of her prescriptions were delivered in pill form. We have to crush the pills and mix with water to administer via her G-Tube. We’d been using a spoon and a bowl to do this. The pill crusher has made it easier to draw her meds now. These were the last two pieces we needed to take care of Claire.

Everything else had been completed beforehand. Last week was a mad dash to make the Friday discharge date. I was so excited and full of nervous energy last week that my sleep cycle suffered further. For that reason, I’m going to cut today’s update short and get in bed. We’ve already seen some improvement since Claire has been at home. I’ll share those things with you tomorrow. How’s that for a teaser?

Goodnight to all and thank you for your prayers and support. We’re home!