Continuing with the "Celebrating Adeline," theme, I tried to catch some "walking" on video. Well, we really aren't walking, or for that matter even close, but we are up and moving in the right direction. She just recently took to her push toy and hopefully will continue to find it useful. That is, as long as daddy doesn't set her up for failure again. (see the video) I still have my fingers crossed that she will be walking in the next couple of months.
Wednesday, March 5, 2008
Tuesday, March 4, 2008
NORMAL!!!!!!!!!
After finishing up a three hour cardiology appointment with Adeline and I was ready to get back on the road to pick up my other two girls. While sitting at a red light I decide to check my voice mail since I didn't have reception in the hospital. When I hear our genetic counselor's voice, my heart drops to my toes!!! No, I am in traffic - I am not ready - I can't hear this now!! Needless, to say it was the last voice mail I was expecting as the results were not supposed to be in until later this week. The lab moved faster than expected which goes against all things my husband has told me about science. The results were in and they were NORMAL!!!! Tears and sweat poured out of my body. I wanted to stand up on top of my car and tell everyone that my little one pound baby still has a chance at being normal. I am so thankful and relieved.
It has been quite the ride these past couple of weeks. I knew the news would come while Alex was away and I was terrified of what it might do to me. How could she not be normal? You can tell she is "there," just interact with her. As my husband put it, "It is black and white. She either has it or she doesn't and there is nothing we can do about it." Well she doesn't have Williams Syndrome or any other chromosomal abnormality. At risk of stating the obvious, I am eternally grateful to have THREE girls who are healthy and thriving.
It is amazing what a bit of perspective can do to you. As I am calling Alex, he is trying to get a hold of me with news of his own. We got on offer on our house at the same time we were told Adeline's test results were normal. I have been waiting for this offer but after hearing such good news about my littlest girl, I seem to care much less about the house and move and just want to revel in my girl. I am thankful for the outpouring of good news yesterday but I am most thankful that I get to walk beside this amazing baby as she gracefully masters life's hurdles.
It has been quite the ride these past couple of weeks. I knew the news would come while Alex was away and I was terrified of what it might do to me. How could she not be normal? You can tell she is "there," just interact with her. As my husband put it, "It is black and white. She either has it or she doesn't and there is nothing we can do about it." Well she doesn't have Williams Syndrome or any other chromosomal abnormality. At risk of stating the obvious, I am eternally grateful to have THREE girls who are healthy and thriving.
It is amazing what a bit of perspective can do to you. As I am calling Alex, he is trying to get a hold of me with news of his own. We got on offer on our house at the same time we were told Adeline's test results were normal. I have been waiting for this offer but after hearing such good news about my littlest girl, I seem to care much less about the house and move and just want to revel in my girl. I am thankful for the outpouring of good news yesterday but I am most thankful that I get to walk beside this amazing baby as she gracefully masters life's hurdles.
Friday, February 29, 2008
Waiting. . . Waiting. . . Waiting. . .
Still waiting with all fingers crossed that results come back quickly and without evidence of Williams Syndrome. Don't know if it is the stress or all of the viruses going around but I ended up sick in bed yesterday. I think all of this waiting is making me sick with worry.
Lila Grace pretty much sums up my emotions in this picture
While stuck in the waiting game, I think it is worth reporting that Adeline tried to sneak up the stairs yesterday. That is a big deal for her as her adventurous side is just beginning to emerge. She is also starting to use a push toy - much to her dismay. She clinches her fists and resists the best she can but eventually she takes a few steps. Crawling is easier but Miss Cynthia (her PT) is forcing her to get up and moving. I can't wait for her to walk but I am afraid her trepidation is going to keep her cruising furniture longer than necessary.
Lila Grace pretty much sums up my emotions in this picture
While stuck in the waiting game, I think it is worth reporting that Adeline tried to sneak up the stairs yesterday. That is a big deal for her as her adventurous side is just beginning to emerge. She is also starting to use a push toy - much to her dismay. She clinches her fists and resists the best she can but eventually she takes a few steps. Crawling is easier but Miss Cynthia (her PT) is forcing her to get up and moving. I can't wait for her to walk but I am afraid her trepidation is going to keep her cruising furniture longer than necessary.
Monday, February 25, 2008
18 Month Milestone???
As I continue to walk down the road of "prematurity," I feel as though my girls are starting to evolve into typical toddlers. They giggle, fuss, play games and get into everything that is off limits. Oh, did I forget to mention that they fight? Yes, that too. All of these things point to normal toddlerhood right?
On the flip side, I feel like we are stuck in the prematurity rut. A typical week looks like:
Monday - Physical Therapy
Tuesday - Speech Therapy
Wednesday - Occupational Therapy
Thursday - Physical Therapy
Friday - Special Instruction
Our list of physicians include the following disciplines:
Pulmonology
Cardiology
ENT
Genetics
Opthamology
Developmental Follow
Dentist (soon)
We have yet to "fire" any of our therapists or doctors. Shouldn't the list be shrinking if we were moving closer to normal? The girls are officially 18 months. I didn't expect our lists to be this long a year and a half in.
Everywhere I go I hear how well the girls are doing. I am in agreement. Look where they started - so small, week and questionable. Today, they are full of life and opinions. Yes, an opinion is what I prayed for day in and day out for Adeline. God answered that prayer and without my asking gave a pretty strong opinion to Miss Lila as well. Normal toddlers?????
I am not sure where I am going with this post. I guess it is evidence that I am still on the fence when I look at the girls. I am so proud of them and love every last bit of them. I love to put up pictures of the day's happenings and comment on how they are growing and developing. Sometimes, when I read through this blog I feel like prematurity isn't the undercurrent anymore. Yet, when I measure the girls against others their age, clearly prematurity exists - possibly in the form of a tidal wave.
"New Normal," has been my theme for the last 18 months. I think we (our family) has done a decent job at adapting to our situation. My question is, "Will all this ever be a thing of the past?" Or, will we just become so accustomed to living life behind the 8 ball that we no longer notice our lives don't parallel the lives of our neighbors and friends?
I remember sitting in the NICU just wishing the first 18 months to soar by. I wanted answers and most doctors seemed to think the answers would come at this year and a half milestone. Well, the months did soar by but the answers haven't been found. When do they come? I am tired of drifting the sea of prematurity! I am ready for someone to tell me where the ceiling is or if the sky really is the limit in terms of the girls' development.
On the flip side, I feel like we are stuck in the prematurity rut. A typical week looks like:
Monday - Physical Therapy
Tuesday - Speech Therapy
Wednesday - Occupational Therapy
Thursday - Physical Therapy
Friday - Special Instruction
Our list of physicians include the following disciplines:
Pulmonology
Cardiology
ENT
Genetics
Opthamology
Developmental Follow
Dentist (soon)
We have yet to "fire" any of our therapists or doctors. Shouldn't the list be shrinking if we were moving closer to normal? The girls are officially 18 months. I didn't expect our lists to be this long a year and a half in.
Everywhere I go I hear how well the girls are doing. I am in agreement. Look where they started - so small, week and questionable. Today, they are full of life and opinions. Yes, an opinion is what I prayed for day in and day out for Adeline. God answered that prayer and without my asking gave a pretty strong opinion to Miss Lila as well. Normal toddlers?????
I am not sure where I am going with this post. I guess it is evidence that I am still on the fence when I look at the girls. I am so proud of them and love every last bit of them. I love to put up pictures of the day's happenings and comment on how they are growing and developing. Sometimes, when I read through this blog I feel like prematurity isn't the undercurrent anymore. Yet, when I measure the girls against others their age, clearly prematurity exists - possibly in the form of a tidal wave.
"New Normal," has been my theme for the last 18 months. I think we (our family) has done a decent job at adapting to our situation. My question is, "Will all this ever be a thing of the past?" Or, will we just become so accustomed to living life behind the 8 ball that we no longer notice our lives don't parallel the lives of our neighbors and friends?
I remember sitting in the NICU just wishing the first 18 months to soar by. I wanted answers and most doctors seemed to think the answers would come at this year and a half milestone. Well, the months did soar by but the answers haven't been found. When do they come? I am tired of drifting the sea of prematurity! I am ready for someone to tell me where the ceiling is or if the sky really is the limit in terms of the girls' development.
Wednesday, February 20, 2008
My Latest Favorite
Not perfect but as close as I am ever going to get when trying to take a picture of the two of them. It is almost easier with three because Savannah can HOLD them down!!
Miss Grace
Well, not actually a day - an hour. We went from walking around the house with Savannah's horse backpack (don't ask me why this thing is so well liked by my children), to tearing up toilet paper all over the bathroom floor.
Before bath time Lila Grace insisted I keep helping her put on her backpack. This child has skills well beyond her age. She carefully pulls one strap off of her arm and then the next in order to have me help her put it right back on. When she feels the strap slipping she adjusts it just like that of a school kid. Now Savannah still claims she can't put on her shirts. Yet, her little sister is close to mastering a backpack? Possibly, my oldest daughter has been playing the helpless card for much too long.
After bath time, I am frantically running around upstairs trying to get our house in order for a showing first thing in the morning. Dusting, making sure toothpaste is washed out of the sink and these sorts of things took my focus off of Lila. Well, my cleaning efforts were soon canceled out by the mess that Miss Grace was making on the bathroom floor. I should have known something was going on because quite is never a good thing when it comes to Lila Grace. She had crawled inside her vanity, unwrapped a roll of toilet paper and then proceeded to tear it in to tiny little pieces. She had the guilty look when I first found her but soon after thought she was soooo funny! How did I make it without cabinet locks and baby gates with Savannah? I can't get Alex to install them quick enough for Miss Grace.
Before bath time Lila Grace insisted I keep helping her put on her backpack. This child has skills well beyond her age. She carefully pulls one strap off of her arm and then the next in order to have me help her put it right back on. When she feels the strap slipping she adjusts it just like that of a school kid. Now Savannah still claims she can't put on her shirts. Yet, her little sister is close to mastering a backpack? Possibly, my oldest daughter has been playing the helpless card for much too long.
After bath time, I am frantically running around upstairs trying to get our house in order for a showing first thing in the morning. Dusting, making sure toothpaste is washed out of the sink and these sorts of things took my focus off of Lila. Well, my cleaning efforts were soon canceled out by the mess that Miss Grace was making on the bathroom floor. I should have known something was going on because quite is never a good thing when it comes to Lila Grace. She had crawled inside her vanity, unwrapped a roll of toilet paper and then proceeded to tear it in to tiny little pieces. She had the guilty look when I first found her but soon after thought she was soooo funny! How did I make it without cabinet locks and baby gates with Savannah? I can't get Alex to install them quick enough for Miss Grace.
Tuesday, February 19, 2008
That Other Shoe Just Might Be Dropping
In the name of honestly documenting my girls' journey, I feel I must post the following.
Back in December when we went to the developmental follow-up appointment, Dr. Bernbaum suggested Adeline see a geneticist. Her reasoning - she has dismorphic features, is developmentally delayed, doesn't look like her parents (I beg to differ) and has low tone. Well getting into any genetics doc is a long and drawn out wait.
Our appointment was yesterday. We saw Dr. Gripp out of duPont and she was wonderful. Adeline was at her best - smiling, laughing and in general wooing everyone with her fabulous personality. Lila Grace also came and showed off her strength and abilities as she used just about everything in the exam room as a climbing apparatus.
Dr. Gripp spent a lot of time measuring Adeline's physical features, looking at both Alex and I and just getting a feel for the twins. She didn't immediately see any conclusive evidence but one syndrome seemed somewhat consistent with Adeline's physical and physiological characteristics. Adeline has a wide nose, a longer upper lip, puffiness under the eyes, is developmentally delayed, has suffered from cardiac issues, and has feeding problems to name a few. Although Dr. Gripp was reluctant to "clinically" diagnose Adeline, she is running a FISH test to determine whether or not Miss Belle has Williams Syndrome.
Williams syndrome is a rare genetic condition (estimated to occur in 1/7,500 births) which causes medical and developmental problems. Most notably, children with WS are cognitively impaired and most likely will not live independently as adults. I am by no means an expert on this syndrome and don't claim to understand what it would be like to raise a child with WS. You can read more about it at williams-syndrome.org.
In order to not belabor the obvious, we are struggling to come to terms with the possibility of our little Belle not leading a normals life. In our heart of hearts we are still hopeful that the test will come back negative. It will be a LONG wait (2-4 weeks).
During this time I am sure my emotions will ebb and flow. Ironically, it is the source of this worry that helps me regain composure. Adeline's smile helps me lose myself in the moment which is what I need.
This afternoon I was extremely tired. I had stayed up late reading blogs by parents raising children with WS. Lila Grace and Savannah were asleep so I was able to get some one on one time with Adeline. After some fun, I put her down for a nap in my room (consequence of the twins thinking nap time is playtime) and headed down stairs to the computer. After giving up in my search for "answers," I went upstairs to lay in my bed and listen to my little girl laugh and babble (obviously not sleeping). She was trying out her "S" sound for the first time and it was really cute. I am confident that I dozed off with a smile on my face. God works in mysterious ways!!
I love her completely - this will never change!!!
Back in December when we went to the developmental follow-up appointment, Dr. Bernbaum suggested Adeline see a geneticist. Her reasoning - she has dismorphic features, is developmentally delayed, doesn't look like her parents (I beg to differ) and has low tone. Well getting into any genetics doc is a long and drawn out wait.
Our appointment was yesterday. We saw Dr. Gripp out of duPont and she was wonderful. Adeline was at her best - smiling, laughing and in general wooing everyone with her fabulous personality. Lila Grace also came and showed off her strength and abilities as she used just about everything in the exam room as a climbing apparatus.
Dr. Gripp spent a lot of time measuring Adeline's physical features, looking at both Alex and I and just getting a feel for the twins. She didn't immediately see any conclusive evidence but one syndrome seemed somewhat consistent with Adeline's physical and physiological characteristics. Adeline has a wide nose, a longer upper lip, puffiness under the eyes, is developmentally delayed, has suffered from cardiac issues, and has feeding problems to name a few. Although Dr. Gripp was reluctant to "clinically" diagnose Adeline, she is running a FISH test to determine whether or not Miss Belle has Williams Syndrome.
Williams syndrome is a rare genetic condition (estimated to occur in 1/7,500 births) which causes medical and developmental problems. Most notably, children with WS are cognitively impaired and most likely will not live independently as adults. I am by no means an expert on this syndrome and don't claim to understand what it would be like to raise a child with WS. You can read more about it at williams-syndrome.org.
In order to not belabor the obvious, we are struggling to come to terms with the possibility of our little Belle not leading a normals life. In our heart of hearts we are still hopeful that the test will come back negative. It will be a LONG wait (2-4 weeks).
During this time I am sure my emotions will ebb and flow. Ironically, it is the source of this worry that helps me regain composure. Adeline's smile helps me lose myself in the moment which is what I need.
This afternoon I was extremely tired. I had stayed up late reading blogs by parents raising children with WS. Lila Grace and Savannah were asleep so I was able to get some one on one time with Adeline. After some fun, I put her down for a nap in my room (consequence of the twins thinking nap time is playtime) and headed down stairs to the computer. After giving up in my search for "answers," I went upstairs to lay in my bed and listen to my little girl laugh and babble (obviously not sleeping). She was trying out her "S" sound for the first time and it was really cute. I am confident that I dozed off with a smile on my face. God works in mysterious ways!!
I love her completely - this will never change!!!
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