Claire turned 2 on March 30th. She had an Elmo Street Party with lots of friends.
Colton Turned 5 with a Super Hero Party!
Saturday, April 28, 2012
Sunday, December 25, 2011
Thursday, December 8, 2011
News from Big Brother
Tuesday, October 11, 2011
We're Home!
Wanted to send a quick note to let everyone know that we got to go home today. Claire is walking around the living room, playing with Colton and having a good time.
We did get to talk with the Occupational Therapist before we left today and she gave us some good tricks to continue to help Claire's left arm continue to progress. She is doing so much better with each day. As you well know, Amanda and I will push that little girl with some intense home therapy. In addition, we will schedule some OT with the Childrens close to home.
We got to talk with the Neurologist after the MRI. Claire did have some spots on both sides of her brain from watershed stroke. The majority of the spots were on the right side which would be why she has lost some function in her left arm. They mentioned that they are not concerned with a loss of function in her eye but would like to continue to follow up in the stroke clinic at Nationwide over the next month. The area of her brain effected could also judgement and impulsivity. Ofcourse since Claire is so young, we cannot assess that at this time and we will never know the full impact because we will just know Claire for Claire. I did joke with Amanda and tell her that Claire and her are no longer allowed to go shopping together because Claire has a deficiency in impulsivity. That is a bad combination for a shopper. Thank you all for your continued prayers.
Claire will go back to have an X-Ray next week to be sure that the small amount of water in her lung continues to decrease.
Love you all
We did get to talk with the Occupational Therapist before we left today and she gave us some good tricks to continue to help Claire's left arm continue to progress. She is doing so much better with each day. As you well know, Amanda and I will push that little girl with some intense home therapy. In addition, we will schedule some OT with the Childrens close to home.
We got to talk with the Neurologist after the MRI. Claire did have some spots on both sides of her brain from watershed stroke. The majority of the spots were on the right side which would be why she has lost some function in her left arm. They mentioned that they are not concerned with a loss of function in her eye but would like to continue to follow up in the stroke clinic at Nationwide over the next month. The area of her brain effected could also judgement and impulsivity. Ofcourse since Claire is so young, we cannot assess that at this time and we will never know the full impact because we will just know Claire for Claire. I did joke with Amanda and tell her that Claire and her are no longer allowed to go shopping together because Claire has a deficiency in impulsivity. That is a bad combination for a shopper. Thank you all for your continued prayers.
Claire will go back to have an X-Ray next week to be sure that the small amount of water in her lung continues to decrease.
Love you all
Monday, October 10, 2011
Bro bro
Can you tell what is missing from the picture??? That is right her oxygen!!! You can tell Claire is feeling better and was excited to play in the playroom with big brother. She was getting frustrated with us that we wouldn't let her walk (poor princess has iv's in both feet). One of the sweetest moments happened in the playroom between big brother and miss Claire bear........they were playing with blocks and Claire leaned over and gave bro bro a big ol two armed hug. Melted this mama's heart. She lifted up both arms and squeezed him tight! Needless to say her left arm is improving each day. The physical therapist stopped by and was very impressed with our therapy we had been doing, and Claire loved her mailbox toy and was sad to see her leave. She said that Claire is doing great and that she will need occupational therapy after she goes home. Kids are amazing......so resilient and still growing. The attending neurologist and the fellow we saw the other day stopped by to see Claire yesterday and Claire charmed the neurologist and even showed off by waving her left arm. The neurologist was completely smitten with sis (who can blame him). So now we are waiting in the dreaded surgery waiting room while Claire has her MRI. Hopefully we will know the extent of her stroke tonight once the radiologist reads the films. She's our miracle and God continues to amaze us.
Saturday, October 8, 2011
Tough news
The results from the CT scan indicate that Claire has had a small stroke, probably during surgery. The cardiologists shared the initial results and then we got to speak with a fellow in neurology. She will have a MRI on Monday to see the exact damage. Luckily it only affects her left arm as far as we can tell. The area of the brain affected could also impact her left eye but we will have to see what the results show from the MRI. They did mention this is not the area that impacts language & learning. We will see therapy (ot and pt) on monday too.
She is smiling and laughing at me even though we didn't get the best news today.
Here is a picture of Claire eating her popsicle in the playroom on C5. We love that girl.
Becoming More Active
Day 6 in the step down unit on C5, Claire has started to become a little more active. We have enjoyed seeing her play and smile and the like. She has been chuckling at all kinds of things and starting to get her personality back.
We do have one thing that we want to share and ask for your prayers. As Claire has become more active, we have noticed that she has limited movement of her left arm. I kind of had flash backs to the first time we were in the hospital when it seemed as soon as we would see some progress, there was another wave of information that crashed down on our nerves.
Yesterday we found that her pleural infusion appeared to decrease in her lungs. We were happy to see that this main response to the Fontan was starting to correct itself as her body becomes used to having all of her deoxygenated blood go to her lungs first, then to her heart. We worked really hard to challenge her lungs by making Sssss sounds and blowing bubbles all the while having good laughs. As I am sure most of you know, nurses regularly flush IVs and we found that the IV in her left arm had run its course and so it was removed. Up until that point, she was mainly using her right arm and we thought it was due to the fact that she still had the splinted. Amanda had made a comment a few days ago about her limited movement in her left arm but we wrote it off due to the IV and splint. With time, we became more concerned and eventually talked with the Doctors. Nurse Amanda did her Nero Assessment and we were waiting in a state of uncertainty. As soon as you think that you turn the corner, something else seems to pop up. The evening doctor said it could be due to the multiple days with the IV / Splint and mentioned we would look at it in the morning.
This morning, Amanda talked with the doctors during their rounds and they agreed that it is probably due to the multiple days of IV / splint but thought it would be best to due a CT Scan just to make sure. We do not have the results yet but we are praying that all the Nervous system is good.
We appreciate your prayers and love you all.
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