Wednesday, December 31, 2008

Happy New Year


We rung it in a little early with a countdown on the porch and horn blowing. The horns were a big hit but were quickly moved indoors as the temperature was quite cold outside. Even The Belle could get her horn going. Not bad for premature lungs.

Hope you had an equally fun and possibly more adventurous New Year's Eve!



Sunday, December 28, 2008

Brushing Therapy


We are on week two of Adeline's brushing program. This is a program designed for kids that are sensory defensive. That is Adeline in a nutshell. She doesn't like to hold hands, touch paint or (for the moment) get wet. It goes far beyond what I just mentioned but unless you are in my house everyday, there is really no way to get a handle on her sensory needs.

I have put the brushing program off until now because I knew I could never follow through on it when by myself. It involves stripping clothes off, brushing Adeline's back, arms, hands, legs and feet. We use the brushes in the picture above and apply quite a bit of pressure. The brushing is followed by joint compressions working from the shoulders down to the toes. This is her least favorite part. This kicker is that we have to do this five times a day. Yes, Occupational Therapists will tell you that it should only take five minutes but that does not include the dressing and redressing. The other complicating factor is that we are rarely home during the times that Adeline needs brushing.

Thankfully, daddy is home for these two weeks and we are on holiday which places us at home with an extra set of hands. Most days we get five brushes in. Adeline doesn't like it and I can't say that her defensiveness had decreased. We are half way through the two week program. Hopefully, I will be singing a different tune when it is over. I feel that Miss Belle puts up with a lot and being brushed five times a day is certainly not a walk in the park for any of us.

Christmas Morning

Christmas morning couldn't have fulfilled me more. All of the hiding, closet wrapping and running from store to store paid off when I saw the delight in my girls' eyes. This video pretty much sums up my girls. . .

Savannah - So very sweet! You will hear her call for her sister because she isn't only excited for her gifts but for her sisters' as well. She also states in the clip, "Santa is so sweet," and, "I'm going to write him a thank you note." Write she did. Somehow she slipped away, wrote a card, addressed it and stamped it before 9:00 a.m. that morning.

Lila - Over the top excited about everything. You will hear her scream "Ernie," over and over again. Forget the the trampoline, she is stuck on the Ernie coloring book.

Adeline - My quiet observer. She stood back, observed the room and identified which gift she was going to get into first. Of course it was Lila's trampoline and not her garage full of cars. The trampoline is really for her physical development any way but we all know that Miss Grace is our jumping bean.

I must also note that this was the anniversary of Adeline's homecoming. Never in a million years would have I guess two years later she would be healthy, happy and jumping on a trampoline!

Tuesday, December 23, 2008

Christmas Philly Style



I had the pleasure (I really do mean pleasure) of accompanying Savannah with many classmates from her preschool into Philadelphia. The agenda, light show and more light shows. It seems that Philly has a new building peaking out of the skyline and it has a phenomenal light show. We also went to the classic light show at what used to be Wanamakers. It was Savannah's third time seeing it. Fortunate for us, a Dicken's Village was in the same building which afforded us the opportunity to wander through.

We ended up taking the train from Thorndale into Philly which was very exciting for the kiddos. From there, we hoofed it around the city. Although the kids were are only five, they did an excellent job of keeping up. Not one complaint from any of them!



Through the eyes of a child. . .


My favorite picture taken in the court yard of city hall. Check out the reflection in the ornament!

Saturday, December 20, 2008

Savannah's Christmas Program


I had the pleasure of watching Savannah perform in her Christmas program. This will be her last program at the Brandywine School because next year she will be in Kindergarten! It amazes me how much she has grown since she started preschool. Her first Christmas program seems so long ago as I remember her barely moving her lips to the words and looking as though she just wanted it all to be over. This year was quite different. Of course, she is still the student that has her eyes on the teacher the entire time and worries if waving to me will get her in trouble. However, I saw some hints of enjoyment as she sang every song and did all of the motions. The program was very very nice. My favorite part was how the class entered the sancturay with battery operated tea light candles and singing a very soft Christmas song. I give their music teacher credit to have so many young children performing so nicely.




Thursday, December 18, 2008

Gingerbread House





We broke out the annual gingerbread house last weekend. This a "must do when daddy is home," activity. I was shocked when it went smoothly. Mainly because this was Savannah's house and all three girls ended up participating. I have purchased the girls a different one to do at a different time.

Savannah and I started in on the house when two seconds later Lila is at the island saying, "Up, up." Savannah surprised me when she didn't want Daddy to take Lila away. She allowed Lila up and eventually Adeline too. Even more crazy is she gave up her seat and stood on a chair so the girls could be more comfortable and safe.

The girls crowded, spilled and even smooshed some of Savannah's art but our big girl hung in there and enjoyed the activity. Lila was surprisingly gentle and tried very hard to put the candy on without getting frosting on her hand. She, of course, tried to taste each piece before it went on. Adeline really struggled with the activity because she still has very poor fine motor skills. She couldn't manipulate the tiny candy with her finger tips but she tried awfully hard.

I walked away from cleaning up the kitchen thinking, how patient and giving Savannah was to her sisters. I also was grateful for Lila and Adeline and their willingness to listen and be careful when I assumed they would "crash" the party.

Oh, I must mention that Lila Grace prefers her clothes off during the evening hours. Clearly she is a third child because I would have never photographed Savannah decorating a gingerbread house without a shirt!!




Monday, December 15, 2008

A Visit with Santa

Let's just say that the first item on my Christmas list is "my old kids back." Yes, unfortunately the girls are way out of their usual range of behavior. Lila and Adeline have been suffering from congestion and ear infections. Lila won't take her binki and is suddenly a tough sleeper. Adeline has become allergic to water - no joke. Honestly, when we humans are mostly water, how can a kid scream in the tub and come out with a red rash up to the water line? (no changes in soaps etc. if you were wondering)

That said, I still enjoyed our trip to see Santa. These fussy kids may still seem unfamiliar to me but excitement and happiness was very apparent when sitting with Santa. I just wish it was apparent in every day life. We waited in a substantial line to see the guy in red. Savannah was very patient while Daddy and Papa entertained the twins. Once it was our turn, Lila and Savannah walked right up to Santa while Adeline was placed in his lap. Santa was a smart one as he told the photographer, "This is going to have to be a quick one." Are we out-growing his lap already? All three girls looked at the camera and were in no rush to get down. We took the twins down and let Savannah have some special time.

Savannah had spent the last month working on a gift for Santa. She figured that no one buys Santa a gift and so off we went to the high class Dollar Store. Savannah chose to buy Santa candy cane decorations for his tree. She told Santa, "You probably don't have time to buy decorations for your tree so I got you these." She had taken home the coloring book Santa gives out from an previous impromptu visit in November and colored every picture for Santa. She gave it to him with a card that read, "I hope you have a nice summer." She understands that this is his busy time of year.

I stood on the sidelines with tears in my eyes as I watched my daughter give Santa his gifts. They were incredibly heartfelt and her biggest priority. Her own "list" was very secondary to what she had brought to give Santa. Savannah looked at Santa with such innocent faith. She doesn't question is existence or what he stands for. While waiting in line she told me, "God gave us Santa to learn how to give and care." Really, what child associates that with Santa. This Santa experience was one of the moments I will always remember. It helped outline what Christmas should be through the eyes of a child. Toys really can be secondary . . . even to a child!

Waiting ever so patiently


Walking the mall when she should be taking a nap

Can you believe that all three girls sat so happily?










Don't think about giving Savannah a hat and not me!!


We followed up the long wait with ice cream (for Savannah and Lila) and fries (for the Belle).

Tuesday, December 9, 2008

Who are These Kids?

It was not even 24 hours ago I was begging my husband to leave his conference early and come home. My girls are a mess. The aren't pleased by anything for more than two minutes, have taken to fighting sleep and are in general, contrary. When nothing I do is right and everything they do is wrong I want to throw my arms up and say, "How did I get here?"

Well I know how I got here and no matter how bad my kids are, I am lucky to be here. Unfortunately, my head is far from heart. I am burned out, frustrated beyond belief and once again feel as though I am drowning. Is two this terrible? Or, a much scarier thought, are my girls always going to be difficult and contrary? I wish I knew! For some reason, when things get really bad, I always try to figure out what it means for the future. Instead, I should concentrate on the fact that both girls have been sick (pulmonary issues, vomiting, diarrhea and ear infections) and that they are off their schedules. Grammy and Papa have recently arrived which allows me to leave them home much more. Not a good idea. My girls are accustomed to a very tight schedule that involves therapy, the YMCA and running to and from preschool.

This to shall pass or so they say. Let's hope that it passes soon. This is not a good way to enter into the holiday season.

Signs of happier times



POP!

Tuesday, December 2, 2008

34 & 38 Can it Be?



Alex and I just finished up celebrating our back to back birthdays. You know you are knee-deep in parenthood when you get a cake just to amuse the kids. This year we went with an ice cream cake thinking daddy might actually eat a bite or two. He did!

The best gift of all. . . The hug from my oldest accompanied by a whispered, "I hope you have the best birthday ever. I knew you were going to be my mommy even before you had me and I was so happy that I got this mommy!" She proceeded to draw a heart on my chest and write XOXO inside it.

Not so flattering but neither is getting older! (taken by our oldest after she independently thought to pose and photograph her parents)

Singing Happy Birthday


Don't know why the camera decided to focus on Miss Grace in the zone

Sunday, November 30, 2008

Sick Again

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.

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.

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.

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.

Tuesday, November 18, 2008

Adding it up

Three girls puking in one day
One girl blowing out her diaper twice
Three beds stripped and washed
Two re-made bed(thank goodness the Belle slept in our room and spared her own crib)
Two Baths
Six loads of puked on bedding and clothes
Two wonderful friends delivered Pedialite
At least 20 rounds of puke
Lots of tears

I am exhausted, my girls are exhausted and we all need relief.

Sick Round One




This is our first official sickness of the season. By the looks of the weather, it is appropriate. I don't count runny noses because having the twins in the babysitting room at the YMCA and Savannah at preschool is a guarantee that all girls will be congested from time to time.

Last night, Adeline started vomiting at 8:00 p.m. and didn't stop until 10:30. She most likely threw up 10 times during that time period. What was odd, is that she was in a spectacular mood and so happy to have her mommy and daddy all to herself. Unfortunately, that wasn't the case this morning. She has continued to puke and is fussy and needy.

Alex left for TX this morning at 3:30 a.m. and Savannah was in my bathroom puking by 4:15. Not a great way to start the morning. She was pretty steady, every hour on the hour. The only positive I can find in this, is that she has graduated to independent puking. She has made it to the toilet every time except once. So much better than having to clean the bed, couch and carpet.

The timing of this really stinks. I guess there is never a good time to be sick but why can't the girls do it while daddy is around? Yes, he was elbow deep in puke last night and was bit cranky about it but I stepped back knowing that I would be doing it all on my own for the next few days. Weighting more heavily on me, is Adeline's developmental follow up appointment with Dr. Bernbaum on Friday. Last time she was seen she had a 102 fever and this appointment looks like it might be in the midst of a sickness too. I really want her to be 100% during this visit.

For now, I am going to assume the girls have Rotavirus. They have had it before and it is nasty. Without going into too much detail, Lila's diaper seals the deal for me. Looks like Rotavirus, smells like Rotavirus - must be Rotavirus. Although it is usually accompanied by just diarrhea, my girls like to violently puke when they have it. I am sure Lila will start puking at any minute. Hopefully, now that they older they will be able to power through and turn the corner much quicker than they did when they were one.

Just for the record, I give it up to single moms. I don't know how they deal with multiple sick kids and the fear that they themselves will get the illness and be out of commission.

Savannah tried hard to rally and play with her Fisher Price Nativity Scene. It didn't last long as she fell asleep on the office floor.

Sunday, November 16, 2008

Braces at Night



Adeline has been fitted for her nighttime braces. She is expected to wear them each night. The idea is that they will hold her foot in a position that will stretch her calves during her sleep. Over time her calves have become tight and her heal cords have tightened as well. All are a sign of Cerebral Palsy but we are forging ahead in hopes of escaping the diagnosis.

For her first night wearing her braces we were expecting a fit, lots of crying and restless night of sleep. I even plugged in the monitor so that her soft cry would wake us should she wake up during the night. Surprisingly, she let me put them on her awake and went down without much of a fight. She was up pretty late that night which helped in her willingness to go down without fighting her braces. Even more surprising was that she slept through the night and even later than usual into the morning.

She still has some learning to do. She doesn't think she can walk in these or get up to a standing position. They aren't made to wear outside of the crib but at age two, there is a lot of activity that goes on in the crib. I felt a bit sorry for her when I went into get her. She usually greets me standing up and jumping and instead was laying flat on her back waiting for me to pick her up.

So for the only problem has been a blister that developed on the outside of her heel. These braces are meant to go over PJ's but I sleep her in a footed pair which makes it hard. We might have to play around a bit to find the right combination of warmth and comfort when it comes to pajamas.

Let's hope night number two goes as well as the first night did.