June 22, 2009


We went to the spina bifida clinic on Friday and it went very well. Here is a run down of the people we saw:

Occupational Therapist- She did not observe any delays.
Physical Therapist- She affirmed what we are working on at home is appropriate.

Dietitian- No concerns
Neurologist- No concerns
Social worker- Encouraged getting involved in an on-line support network but thought we were a 'healthy' family.

Orthopaedic- She is not worried about scoliosis. Whitney's left leg turns in at the hip and it may need to be surgically corrected down the road. She wants us to get a stander for her soon. We also were able to retire Whitney's night time AFO's!

Physiatrist- No concerns

I am so thankful we can have all of these appointments in one day. The wonderful thing is that 3 of them wanted to see us back in 6 months so we are able to do it in one day again. It makes life so much easier.

We are currently in need of a used stander for Whitney. If you know of any laying around we would love to put it to good use.

June 17, 2009

Hospital visit

Whitney was admitted over the weekend for a UTI (urinary tract infection). Routine is now back in place a few days later. We were out with friends on Saturday evening. I stopped in on the girls to check on them and noticed Whitney's legs were warm. She has low circulation in her legs so this was very unusual. Her temperature was 99 something so I gave her Tylenol and tried to not over react. Sunday morning it was up to 102 and we began packing for the ER and calling her doctors. Our guess was a UTI or shunt related. Providentially Matt's parents were in town. We called them and they were happy to take Fiona for a few days.

Arriving in the ER has become easier and I am so thankful for that. Previously it has been very emotional for me now I am able to be more calm which is better for Whitney as well. A few hours in the ER determined a UTI, temp up to 104, and a need to be admitted overnight. We walked on the Peds floor and the nurse recognized us right away. It was nice to be welcomed by a friendly, familiar face. Thankfully, Matt and I were able to be there together to take turns answering the same questions and being an advocate for Whitney. We were discharged Monday late afternoon and Fiona came home on Tuesday afternoon.

A few things we realized we needed to be thankful for:
Great health care
Knowing how to prepare for a night in the hospital
Knowing what steps to take before we leave for the ER
Recognizing faces on the Peds floor
Learning how to advocate for Whitney
Having a long healthy stretch
Being able to work as a team with each other

Friday we have our all day spina bifida clinic and then we do not have much until mid-July. Thank you for checking up on us. Enjoy your day!

June 3, 2009

Up to 12

Yesterday we had another appointment to check on Whitney's hip growth. The x rays showed an increase in growth over the past 4 weeks. We are thrilled! The doctor said she only needs to wear the brace overnight for 12 hours. When I put Whitney down for a nap and said, 'Whitney where is your brace?' she just grinned up at me. Currently we are equipment free during waking hours. In reality I know this time may not come again so we are going to live it up this summer.

Whitney continues to develop on track in fine motor and speech. We are working on crawling and she is inch worming herself around now. Fiona's personal space is shrinking. I heard her say to Whitney this morning, "STOP touching me!" I love hearing the normal sister stuff.

Another change in the past month or so has been that Whitney now goes #2 on the potty each day. One of her first words is, "poop". I think this is very funny and fantastic at the same time. It seems we have tackled the constipation monster.