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.

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.

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.

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.

First Day of School for Miss Belle

I use the term "school" VERY loosely as I don't believe two year olds belong in a structured school setting. This certainly isn't a classroom but a playgroup with a few structured activities. When it comes to the Belle school seems appropriate. Why? Her therapists, along with myself have many question marks when it comes to Adeline. Does she really understand? Is processing and sensory issues getting in her way of carrying out a request? Does she process peer pressure (following along the other children)? Is she listening and not processing or does she just not listen?

In order to shake some of these issues out, we collectively decided to put her in a group setting one day week. When Savannah was asked by a neighbor why Adeline is going to school and not Lila, she responded, "We are trying to see if she will become a better listener? (Lila can listen just fine when she wants too.) We are hoping that Adeline will become familiar with the group and listen to her teacher's requests, follow the group and fit in nicely. It is a tall order but a great environment for her to either sink or swim. Let's pray she swims.

About her class:
Adeline is by far the youngest in her class. Her birthday of August (which is really November by skill levels and adjusted age) doesn't make the June cut off. There are many kids getting ready to turn three in a few months while she is just getting used to two. She is by far the smallest but she doesn't standout that way. I just did a quick scan of the room and noted it. I don't think anyone else would see it. She is not as physically able as the other kids. However, she is social with both the children and the teachers (we did a trial run a few weeks ago). There are six other children in the class and two teachers. A great ratio.

Today she dropped off nicely and told me goodbye. She went with the teacher happily. Upon pickup I was told she did great and that she likes to climb. I am not sure what that means but from my experience, she likes to climb up my legs and onto chairs. I was told she imitated the other kids at snack time by banging on the table and that she ate her goldfish but wouldn't drink out of a cup. I realized that she is probably the only kid in there still on a bottle. Adeline still won't take the cup. There are lots of things I will need to explain as time goes on.

The moment she saw me at pickup she said in very loud voice, "Bye Bye," and ran to me. She seemed happy. Let's just hope she swims!!

National Prematurity Awareness Day

I had hopes of writing something profound that would give a new found spin on prematurity so that others might see that it is widespread and serious. There seems to be a spotlight on various types of cancers but prematurity still sits in the shadows. It is real. I have lived it. My girls fought through it and one is still fighting. Prematurity is not a simple NICU stay. It doesn't necessarily go away. Some babies are lucky and leave it behind. Some have to factor their prematurity into their everyday lives. Some babies never even get the chance. Regardless of the outcome, the families are forever changed.

I revisited our NICU stay by watching our You Tube video. I am in awe that both of my girls lived. The odds were stacked against them. Two years later, I am still trying to digest the magnitude of this miracle. I am also trying to digest what I would be like today if the outcome had been less favorable. Too many parents are sitting at home grieving for their babies that didn't win the fight.

For more information about prematurity on a national level you can visit the March of Dimes website. They ask for you to sign their petition in support of their many efforts to save premature babies and prevent early births. Please take a moment and sign your name. I know my girls wouldn't be here had it not been for the efforts of the March of Dimes.