Mia had a wonderful day and night last night. She made it all day and a couple of naps during the day yesterday without the oxygen. It was a true test through the night and she passed with flying colors!! So we escaped the "day spa" we had become so accustom to after 9 days. We will miss a couple of our nurses but we won't miss being confined to the floor space that the tubing and monitoring wires allowed us. Plus with RSV we were in "isolation" no visitors and no leaving the room to walk the halls... even for mom.
I am so thankful for all of our friends and family who have been awesome prayer warriors. Jesus definitely had her in his hands!! Breathing straight from his mouth to her lungs!! She is stronger and stronger everyday!!
You can tell she is happy to be home... loving seeing her daddy and brother and sisters. Even the dogs are happy to see her!! And her awesome daddy made sure the house was Extra clean- he had air ducts cleaned and washed, carpets cleaned, and crew came in to clean it up extra clean!! All for his little princess!!
More updates soon... have a great night.
Wednesday, March 10, 2010
Sunday, March 7, 2010
So much to catch up on...
Our little girl is growing and learning to do so many new things...
She at 4 months was 13 pounds and 24" long. She is in the 35% for weight and 39% for height using the downs charting. Perfect little angel.
Over these past few months we have joined the North Dallas Down Syndrome Guild and been given a wealth of resources for Mia. We have had her assessed through the Early Childhood Intervention group and she receives her services and therapies here at the house!! It is wonderful to be able to do this in her environment!! She tested when she was almost 4 months and was testing at the 6 month range for developmental and physical. She is so strong and active and it is showing!!
It's hard to believe so much time has flown by... she has been a little cheerleader for her sister at the cheer competitions. And that is so fun!! The gym Brookelyn cheers for has a Special Stars team that performs and competes and there are so many girls with downs on the squad doing the tumbling and pyramids just like the other girls!! It is so inspiring to watch.
Mia loves her hands she is clapping them together and grasping them all the time. She is batting at the toys that hang in front of her and rattling the toys in her hands to make the noise they should and that she loves!! Her favorites are still Miss Dolly, she loves her pig tails and hold them in her mouth!! And of course Ellie the Elephant because she can make her play a song and her dangling feet are easy to grasp.
She is so funny to play with now... she loves to laugh and to make you laugh. It is a blast to watch the kids get such joy from the joy she gets!!
She just started smacking her lips to show kisses. It's got to be the sweetest. But the funniest is her little laugh she does when we put her hand across to the opposite foot and make her tickle herself!!! She could laugh all day doing that!!
On a serious note, we are battling her first illness. She has had congestion for a couple of weeks and that is so common with downs children because of their small nasal cavities. We went in Thursday of last week and she was given a medication to help much like a baby benedryl and it didn't help much by Sunday she spike a fever and we went to the ER and was diagnosed with RSV thru testing and they were able to do a deep suctioning in her nose and sent us home with albuterol for our nebulizer we already had. She did well on Monday and had an appt to follow up with our doctor on Tues morning. He was able to give her another breathing treatment and do the suctioning again... much deeper than we can do with a traditional aspirator. Told me to increase the treatments to every 4 hours. In 4 hours we were back in the office, she was breathing so fast and shallow I knew it wasn't better and certainly not good. In 20 minutes after getting her pulse ox and deep suctioning again we were on our way via ambulance to the children's unit at the hospital. We have been here ever since. She has the RSV and also pneumonia in her right lung. She is feeling and doing soooo much better than 6 days ago. She is playing and talking and sitting up and just doing all wonderful things but hanging onto that .3 liter of oxygen. She was completely off today but when she goes to sleep she desats and has to be put back on. On Tuesday she was on 4 liters of oxygen so we are doing great!!! The doctors said that "typical" children can hold on to that last tenth of a liter for up to 5 days and with downs they have seen it even double that. So, we wait. She is getting the best care and has wonderful nurses trying their best to be aggressive with the oxygen take away game but her body will let us know when it's time. Just praying for your breath Jesus straight to her lungs!! It's hard to be separated from the family. With the RSV she is in isolation- no kid visitors and we can't leave the room and I can't even go get a cup of joe from the kitchen. But she is taking it all in stride. She is eating great and sleeping through the night again like she were at home. It's play play play all day~~
I do have a few pics that I can post. I know so many of you look forward to the updates and I apologize that it's been a while. Getting settled into the new house her in Texas has been fun but really a lot of work!! And add kid activities and a baby who loves to sleep at night and not nap and you don't get a lot of computer time!!
Here's daddy playing with her while we were at Ethan's Upwards basketball...
I love that the first thing Ethan wants to do when he gets up is see "my little Mia girl" here's a glimpse of how that looks and of course everything is "Mom take our picture!!"
Look at this smile... her and Miss Dolly it's a silly game Brookelyn was playing with her but it was so funny!!
Our friends adopted a sweet girl Fiona from China years back and we went to celebrate the Chinese New Year with them... Mia wore her RED flower and ladybug outfit to celebrate... somehow this is the only pic we got of her that day...
And one last one that Brookelyn posed... this is Mia helping mommy decide what's for dinner...
I have more that need to be uploaded... so more to come soon. I promise to update on her hospital stay as well!!
She at 4 months was 13 pounds and 24" long. She is in the 35% for weight and 39% for height using the downs charting. Perfect little angel.
Over these past few months we have joined the North Dallas Down Syndrome Guild and been given a wealth of resources for Mia. We have had her assessed through the Early Childhood Intervention group and she receives her services and therapies here at the house!! It is wonderful to be able to do this in her environment!! She tested when she was almost 4 months and was testing at the 6 month range for developmental and physical. She is so strong and active and it is showing!!
It's hard to believe so much time has flown by... she has been a little cheerleader for her sister at the cheer competitions. And that is so fun!! The gym Brookelyn cheers for has a Special Stars team that performs and competes and there are so many girls with downs on the squad doing the tumbling and pyramids just like the other girls!! It is so inspiring to watch.
Mia loves her hands she is clapping them together and grasping them all the time. She is batting at the toys that hang in front of her and rattling the toys in her hands to make the noise they should and that she loves!! Her favorites are still Miss Dolly, she loves her pig tails and hold them in her mouth!! And of course Ellie the Elephant because she can make her play a song and her dangling feet are easy to grasp.
She is so funny to play with now... she loves to laugh and to make you laugh. It is a blast to watch the kids get such joy from the joy she gets!!
She just started smacking her lips to show kisses. It's got to be the sweetest. But the funniest is her little laugh she does when we put her hand across to the opposite foot and make her tickle herself!!! She could laugh all day doing that!!
On a serious note, we are battling her first illness. She has had congestion for a couple of weeks and that is so common with downs children because of their small nasal cavities. We went in Thursday of last week and she was given a medication to help much like a baby benedryl and it didn't help much by Sunday she spike a fever and we went to the ER and was diagnosed with RSV thru testing and they were able to do a deep suctioning in her nose and sent us home with albuterol for our nebulizer we already had. She did well on Monday and had an appt to follow up with our doctor on Tues morning. He was able to give her another breathing treatment and do the suctioning again... much deeper than we can do with a traditional aspirator. Told me to increase the treatments to every 4 hours. In 4 hours we were back in the office, she was breathing so fast and shallow I knew it wasn't better and certainly not good. In 20 minutes after getting her pulse ox and deep suctioning again we were on our way via ambulance to the children's unit at the hospital. We have been here ever since. She has the RSV and also pneumonia in her right lung. She is feeling and doing soooo much better than 6 days ago. She is playing and talking and sitting up and just doing all wonderful things but hanging onto that .3 liter of oxygen. She was completely off today but when she goes to sleep she desats and has to be put back on. On Tuesday she was on 4 liters of oxygen so we are doing great!!! The doctors said that "typical" children can hold on to that last tenth of a liter for up to 5 days and with downs they have seen it even double that. So, we wait. She is getting the best care and has wonderful nurses trying their best to be aggressive with the oxygen take away game but her body will let us know when it's time. Just praying for your breath Jesus straight to her lungs!! It's hard to be separated from the family. With the RSV she is in isolation- no kid visitors and we can't leave the room and I can't even go get a cup of joe from the kitchen. But she is taking it all in stride. She is eating great and sleeping through the night again like she were at home. It's play play play all day~~
I do have a few pics that I can post. I know so many of you look forward to the updates and I apologize that it's been a while. Getting settled into the new house her in Texas has been fun but really a lot of work!! And add kid activities and a baby who loves to sleep at night and not nap and you don't get a lot of computer time!!
Here's daddy playing with her while we were at Ethan's Upwards basketball...
I love that the first thing Ethan wants to do when he gets up is see "my little Mia girl" here's a glimpse of how that looks and of course everything is "Mom take our picture!!"
Look at this smile... her and Miss Dolly it's a silly game Brookelyn was playing with her but it was so funny!!
Our friends adopted a sweet girl Fiona from China years back and we went to celebrate the Chinese New Year with them... Mia wore her RED flower and ladybug outfit to celebrate... somehow this is the only pic we got of her that day...
And one last one that Brookelyn posed... this is Mia helping mommy decide what's for dinner...
I have more that need to be uploaded... so more to come soon. I promise to update on her hospital stay as well!!
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