Ruby has been giggly and content all week, but unfortunately she had seven seizures! We have no idea why she had so many after the pneumonia was gone. We increased a med last night and thankfully today was a great day. I am hoping that stops the seizures.
We have been out with friends and family all weekend and the kids have done so well. They are playing hard in the sun and then crashing at night. Ruby is tired after her seizures, but other than that she has been so happy. Her lack of mobility makes outdoor activities a little tough. The wheelchair does not do well in the sand at the beach or bark in the parks and this can be frustrating.
Even so, I am thankful for her smile and the beautiful weather. Tonight I am feeling peaceful and blessed.
Hope you all have a blessed Memorial Day!
Sunday, May 25, 2014
Wednesday, May 14, 2014
ABR Trip Recap
We are still recovering from our crazy ABR trip last week. Here's the story…
Unfortunately, Ruby threw up in the car on the way to Pennsylvania. That night (Wed night) she spiked a high fever. Mark made a Walmart run in the middle of the night to get her some motrin and a thermometer. We were up most of the night with her as she was pretty miserable.
Thankfully, in the morning she didn't have a fever and she seemed tired, but okay, so we stuck it out for our training session that day. We made it through two sessions and an evaluation, but, by the end of the day Ruby was so exhausted and the fever came back. We put her to bed early and she slept hard for a few hours. Right when Mark and I were ready to go to bed Ruby started fussing. Her fever was high and she was so uncomfortable. She stayed awake whimpering from 11pm-4am. Mark and I tried to decide what we should do. We knew she needed to see a doctor, but we were 12 hours away from home. Should we take her to the ER in Pennsylvania? Should we get in the car and drive home through the night? Should we wait it out and try to get her last training session in?
Finally she crashed and so we decided to as well. We slept from 4:30-6:30am and then got up and got ready to drive home. We met with Ruby's trainer for about 30 minutes before our scheduled session. He quickly explained the last of the exercises we needed and he gave us the rest of our therapy tools. Then we skipped the session and drove to Michigan.
We drove for a long 12 hours and went right to DeVos Children's Hospital in Grand Rapids. Ruby was a mess by the time we got to the ER. She threw up on the way to our room and cried hard for awhile. Her fever was 103.5 by this point. They did a chest x-ray and found pneumonia, which is what we had expected. She probably aspirated Wednesday morning, which caused the pneumonia.
Thankfully, her stats were fairly good so they gave her meds to control the fever and vomiting and then sent us home on oral antibiotics. Ruby felt miserable for the two days, but by Sunday night we started to see a few smiles again. She has been home from school all week. She is doing fairly well at home, but still so tired and coughing a lot.
To top this off, Tabatha had fever off and on from Saturday-Tuesday. Needless to say, it has been a LONG week and we are all tired.
We are glad we got what we needed from the ABR training. We are convinced this is the best therapy for her as her body continues normalize and show positive changes. It was disappointing that the trip was so exhausting and stressful, but we are thankful the therapy is helping Ruby. This makes all the stress worth it.
Unfortunately, Ruby threw up in the car on the way to Pennsylvania. That night (Wed night) she spiked a high fever. Mark made a Walmart run in the middle of the night to get her some motrin and a thermometer. We were up most of the night with her as she was pretty miserable.
Thankfully, in the morning she didn't have a fever and she seemed tired, but okay, so we stuck it out for our training session that day. We made it through two sessions and an evaluation, but, by the end of the day Ruby was so exhausted and the fever came back. We put her to bed early and she slept hard for a few hours. Right when Mark and I were ready to go to bed Ruby started fussing. Her fever was high and she was so uncomfortable. She stayed awake whimpering from 11pm-4am. Mark and I tried to decide what we should do. We knew she needed to see a doctor, but we were 12 hours away from home. Should we take her to the ER in Pennsylvania? Should we get in the car and drive home through the night? Should we wait it out and try to get her last training session in?
Finally she crashed and so we decided to as well. We slept from 4:30-6:30am and then got up and got ready to drive home. We met with Ruby's trainer for about 30 minutes before our scheduled session. He quickly explained the last of the exercises we needed and he gave us the rest of our therapy tools. Then we skipped the session and drove to Michigan.
We drove for a long 12 hours and went right to DeVos Children's Hospital in Grand Rapids. Ruby was a mess by the time we got to the ER. She threw up on the way to our room and cried hard for awhile. Her fever was 103.5 by this point. They did a chest x-ray and found pneumonia, which is what we had expected. She probably aspirated Wednesday morning, which caused the pneumonia.
Thankfully, her stats were fairly good so they gave her meds to control the fever and vomiting and then sent us home on oral antibiotics. Ruby felt miserable for the two days, but by Sunday night we started to see a few smiles again. She has been home from school all week. She is doing fairly well at home, but still so tired and coughing a lot.
To top this off, Tabatha had fever off and on from Saturday-Tuesday. Needless to say, it has been a LONG week and we are all tired.
We are glad we got what we needed from the ABR training. We are convinced this is the best therapy for her as her body continues normalize and show positive changes. It was disappointing that the trip was so exhausting and stressful, but we are thankful the therapy is helping Ruby. This makes all the stress worth it.
Tuesday, May 6, 2014
ABR Here We Come
Mark, Ruby and I are heading to Pennsylvania tomorrow for some more ABR therapy training. It will be a quick trip; we will drive most of the day tomorrow, have training sessions all day Thursday and Friday morning and then we will head for home. My parents are graciously taking Tabatha and Charlie for three days. They are THRILLED to be going to Grandpa and Grandma's house for a sleepover :)
While I wish our time away could be spent differently, I am looking forward to traveling with Mark and Ruby. Thankfully Ruby is usually a great traveler and it is always nice to connect with Mark in the car and eat out with him for a few days.
We anticipate learning new exercises and seeing how Ruby's body has changed since we were in Montreal six months ago. Please pray we are encouraged about the progress we see and feel energized for many more months of therapy for our little sweetheart.
While I wish our time away could be spent differently, I am looking forward to traveling with Mark and Ruby. Thankfully Ruby is usually a great traveler and it is always nice to connect with Mark in the car and eat out with him for a few days.
We anticipate learning new exercises and seeing how Ruby's body has changed since we were in Montreal six months ago. Please pray we are encouraged about the progress we see and feel energized for many more months of therapy for our little sweetheart.
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