We are supposed to be in Hershey, PA right now enjoying a holiday getaway. Unfortunately, Adeline woke up last night with a pronounced cough and an unknown source of pain. We were up and down with her all night. She eventually, vomitted numerous times.
As she was laying on Alex's chest crying in our bed, all I could think of was our canceled vacation. How disappointed Savannah would be! I wondered, "Will she perk up in the morning? She didn't have a fever." But then her prematurity snuck in and brought everything into focus. No we weren't going to go because she has compromised lungs that can go from bad to worse in a heartbeat. Just because she is happy one minute doesn't mean she won't have a 105 fever and satting 87 the next. It is cold and rainy and no matter how much I bundle this child, I can't bundle her lungs. Heat comes from the inside and child must be active if going to stay warm. Hanging in a stroller listless isn't going do it. If she were a "normal" kid I think we would have considered going a little more strongly. Regardless, sick kids need to be in their home. This was one of those times when I wasn't just thinking about the sick kid but all the team members involved. It was hard to unpack the freshly packed car and suitcases.
Everything ended up working out. Adeline stayed asleep in our bed until much after 9:00 a.m. which proved she need the rest. The weather was really bad and all Savannah wanted to do, after getting over the initial disappointment, was decorate the tree. Decorate we did!
Adeline seems to be fine, of course. It took her until after her nap to perk up but this evening she was back to her old self. Let's hope she doesn't wake up again tonight.
Sunday, November 30, 2008
Friday, November 28, 2008
Kickin' off the Holiday Season
It is officially Christmas around here. Our lights are hung, decorations up and Christmas PJ's on. In case you haven't quiet gotten into the spirit. . .
Send your own ElfYourself eCards
Images from our Thanksgiving
Here are few pictures of our quiet day at home. Savannah made her first pumpkin pie and the girls really enjoyed eating it - even the Belle. The girls also had fun making a turkey on the front door. Savannah is always begging for a craft and cutting feathers was about all I could come up with. Finally, here is a slide show of Thanksgiving through Savannah's lens.
Thursday, November 27, 2008
Happy Thanksgiving
We are spending a quiet day at home. Although we would like to be surrounded by family, we are happy to enjoy the calm and quiet that this day brings our family. We have never done the big Thanksgiving but instead use the day to take a deep breath before the madness of the holidays begins. Because we don't have a "to do list" a mile long, we are able to reflect on this year's blessings. We hope that you are able to do the same no matter where you are.
Sunday, November 23, 2008
Videos of Miss Grace
This video catches Lila's first observation of the snow. Although her speech is hard to understand I was able to glean "Snow, Uh-Oh, Daddy." She is looking at the BBQ which she mostly likely associates with daddy. Clearly, she thinks that Daddy isn't going to be pleased with a snow covered BBQ.
Just so you know, Savannah wasn't putting on a concerned and comforting act for the camera. You can hear her throughout the video telling Lila that it is okay. She is so sweet with her sisters.
Here is a video of Lila doing her routine climbing into the high chair. She didn't have shoes on which makes it harder for her. If you listen carefully, she says, "Yaya eat." Yaya is what she calls Adeline and I think she telling me that she is going to eat in Adeline's high chair since that is the one she crawled into. At the end of the video you can hear her say, "Yaya" as she points to her high chair indicating that Adeline should sit in hers.
Just so you know, Savannah wasn't putting on a concerned and comforting act for the camera. You can hear her throughout the video telling Lila that it is okay. She is so sweet with her sisters.
Here is a video of Lila doing her routine climbing into the high chair. She didn't have shoes on which makes it harder for her. If you listen carefully, she says, "Yaya eat." Yaya is what she calls Adeline and I think she telling me that she is going to eat in Adeline's high chair since that is the one she crawled into. At the end of the video you can hear her say, "Yaya" as she points to her high chair indicating that Adeline should sit in hers.
Saturday, November 22, 2008
Adeline's Developmental Evaluation
Our week came to a close with Adeline's appointment with Dr. Bernbaum. We woke up yesterday to a few inches of snow which I found enjoyable and uplifting. Was it a sign for good things to come? There was no denying that this day was enveloped by mixed emotions. I should have been putting together the girls' second birthday party instead of taking Adeline to a doctor who is supposedly going to tell me if she is going to be normal. It was, in fact, their due date.
After dropping my other kids with good friends, Adeline and I headed out. When we arrived we were told that one of the doctors was late and were asked to get the physical exam out of the way while we waited. Immediately upon entering the exam room Adeline started crying. Yes, she knows all too well that nothing good is going to come from her getting up on that table. I requested that we leave the room to keep her fresh and happy for the multiple tasks she would soon be requested to perform for the developmental assessment.
Soon, Adeline was in the testing chair and pointing to pictures and body parts, taking pegs in and out, stringing beads and stacking blocks. She was just as feisty as Lila Grace was two weeks before. Often she shoved things back at the doctor saying, "Thank you," and "All done." She put her head off to the side and said, "night night." (good pretend play I might add). Anyway, she did really well when she wanted to and was very frustrating at other times. She refused to say and point to objects that she knows and was obsessed with the clock on the wall saying, "Clock, tick tock" every two minutes. I was sweaty and tired by the end of it and Adeline was too. We waited a long twenty minutes while the test was scored.
I was pleasantly surprised when the doctor said she was very pleased with Adeline and surprised by her "successful outcome." That is about as positive as this doctor appears. There is no, "Wow, she was a one pound baby and shows no signs of anything but a "normal" outcome." She proceeded to tell us that Adeline can be looked at two different ways. If her age is adjusted she is exactly two and falls under the "normal umbrella" but is at the low end of the range. If her age is not adjusted she is "mildly delayed." I was shocked that it wasn't a moderate delay. Mild is not something I often hear when referring to the Belle. I was more than pleased and proceeded to asked questions about the future based upon these results. The doctor was reluctant to give predictions but saw no reason why she wouldn't continue to thrive in a mainstream environment. She specifically said that Adeline belongs in a mainstream classroom now and most likely forever. Her rate of closing the gap has accelerated and is expected to continue to do so. Who knows when it will close but it looks like there is an expectation for it close which is a comfort. I had previously envisioned her in a special needs preschool and mainstreamed into Kindergarten with plenty of additional learning support. Come to find out, she should continue preschool in mainstream environment and all of the services we have now and all that I thought we would need in the future is likely to decrease significantly.
I can't quite put into words how wonderful it was to hear this positive evaluation of Adeline. I was prepared for much worse. I must say, I recognize that this doctor does not have the final say on Adeline and doesn't have a clear picture of all of her issues. I am still prepared for anything on down the road. I do, however, believe that it was an accurate evaluation of the here and now. I went in thinking that Adeline was about six months behind. When looking at all of the domains of development, Adeline presented anywhere from 19 months to 21 months old. I'll take it with a smile. I am also pleased that her delays are global. I feel that as long as she continues to develop as a whole at the same rate, she is less likely to have large deficits later on. Specifically, as long as things are developing together, she is less likely to receive a diagnosis or be cognitively impaired on down the road. That is just my own take on the situation. IQ testing begins at five that is when we will know for sure is she is out of the woods for mental retardation. According this doctor, she shows no signs right now.
It impossible to express how much I love this girl. She is pure, wise and determined. She has made me ten times the person I was before I carried her for a mere 27 weeks. She teaches me that faith, hope and love are what enriches your everyday.
She is my stress yet she is my peace.
She is my worry yet she is my comfort.
She is still so small yet she is larger than life.
She is a miracle!
I captured some synchronized dancing last night and thought it would be appropriate to post. This is what the girls look like on what should have been their second birthday.
After dropping my other kids with good friends, Adeline and I headed out. When we arrived we were told that one of the doctors was late and were asked to get the physical exam out of the way while we waited. Immediately upon entering the exam room Adeline started crying. Yes, she knows all too well that nothing good is going to come from her getting up on that table. I requested that we leave the room to keep her fresh and happy for the multiple tasks she would soon be requested to perform for the developmental assessment.
Soon, Adeline was in the testing chair and pointing to pictures and body parts, taking pegs in and out, stringing beads and stacking blocks. She was just as feisty as Lila Grace was two weeks before. Often she shoved things back at the doctor saying, "Thank you," and "All done." She put her head off to the side and said, "night night." (good pretend play I might add). Anyway, she did really well when she wanted to and was very frustrating at other times. She refused to say and point to objects that she knows and was obsessed with the clock on the wall saying, "Clock, tick tock" every two minutes. I was sweaty and tired by the end of it and Adeline was too. We waited a long twenty minutes while the test was scored.
I was pleasantly surprised when the doctor said she was very pleased with Adeline and surprised by her "successful outcome." That is about as positive as this doctor appears. There is no, "Wow, she was a one pound baby and shows no signs of anything but a "normal" outcome." She proceeded to tell us that Adeline can be looked at two different ways. If her age is adjusted she is exactly two and falls under the "normal umbrella" but is at the low end of the range. If her age is not adjusted she is "mildly delayed." I was shocked that it wasn't a moderate delay. Mild is not something I often hear when referring to the Belle. I was more than pleased and proceeded to asked questions about the future based upon these results. The doctor was reluctant to give predictions but saw no reason why she wouldn't continue to thrive in a mainstream environment. She specifically said that Adeline belongs in a mainstream classroom now and most likely forever. Her rate of closing the gap has accelerated and is expected to continue to do so. Who knows when it will close but it looks like there is an expectation for it close which is a comfort. I had previously envisioned her in a special needs preschool and mainstreamed into Kindergarten with plenty of additional learning support. Come to find out, she should continue preschool in mainstream environment and all of the services we have now and all that I thought we would need in the future is likely to decrease significantly.
I can't quite put into words how wonderful it was to hear this positive evaluation of Adeline. I was prepared for much worse. I must say, I recognize that this doctor does not have the final say on Adeline and doesn't have a clear picture of all of her issues. I am still prepared for anything on down the road. I do, however, believe that it was an accurate evaluation of the here and now. I went in thinking that Adeline was about six months behind. When looking at all of the domains of development, Adeline presented anywhere from 19 months to 21 months old. I'll take it with a smile. I am also pleased that her delays are global. I feel that as long as she continues to develop as a whole at the same rate, she is less likely to have large deficits later on. Specifically, as long as things are developing together, she is less likely to receive a diagnosis or be cognitively impaired on down the road. That is just my own take on the situation. IQ testing begins at five that is when we will know for sure is she is out of the woods for mental retardation. According this doctor, she shows no signs right now.
It impossible to express how much I love this girl. She is pure, wise and determined. She has made me ten times the person I was before I carried her for a mere 27 weeks. She teaches me that faith, hope and love are what enriches your everyday.
She is my stress yet she is my peace.
She is my worry yet she is my comfort.
She is still so small yet she is larger than life.
She is a miracle!
I captured some synchronized dancing last night and thought it would be appropriate to post. This is what the girls look like on what should have been their second birthday.
Thursday, November 20, 2008
Better, Thank Goodness
I just want to say thank you for all of the well wishes and support from many of you. I was terrified that this virus would hold on for days and that I would eventually get it. Good news! All my girls are on the mend and I am still going strong. Appetites are still off but mine would be too if I puked nonstop for a day. 
I went downstairs to get Adeline's bottle before bedtime and found this. I raced to get the camera and ended up taking blurry pictures. The "idea" was captured. Savannah was sitting on the floor and both sisters and joined her for Savannah's version of "The Very Lonely Firefly." It was quite sweet. She then proceeded to put "her" baby to bed. I guess I get Adeline while she takes Lila Grace. I find it amusing that Lila will do just about anything when Savannah is pretending to take care of her. When I take care of her she is very contrary.
We are on the eve of Dr. Bernbaum and I am nervous. I pray that Adeline is full strength tomorrow and shows them what she can do. My nerves were lessened when I got a wonderful report from her physical therapist today. Her physical therapist went to school with her and was astounded at how well Adeline "hung" with the rest of the class. She is doing so well. She stands up for herself when someone takes her toy, she assesses her environment before acting and, most surprisingly, sat in her chair for snack and tried to do the motions to their "grace." This was only her second day there and she was already catching on to the snack routine. I am so proud of her.
I went downstairs to get Adeline's bottle before bedtime and found this. I raced to get the camera and ended up taking blurry pictures. The "idea" was captured. Savannah was sitting on the floor and both sisters and joined her for Savannah's version of "The Very Lonely Firefly." It was quite sweet. She then proceeded to put "her" baby to bed. I guess I get Adeline while she takes Lila Grace. I find it amusing that Lila will do just about anything when Savannah is pretending to take care of her. When I take care of her she is very contrary.
We are on the eve of Dr. Bernbaum and I am nervous. I pray that Adeline is full strength tomorrow and shows them what she can do. My nerves were lessened when I got a wonderful report from her physical therapist today. Her physical therapist went to school with her and was astounded at how well Adeline "hung" with the rest of the class. She is doing so well. She stands up for herself when someone takes her toy, she assesses her environment before acting and, most surprisingly, sat in her chair for snack and tried to do the motions to their "grace." This was only her second day there and she was already catching on to the snack routine. I am so proud of her.
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