Still Sick

You know things aren't getting better when I have Lila Grace strapped in the swing. There was a time when both girls lived in these swings but that was many months ago.

Both girls woke up crying - something they never do - feverish and very lethargic. Without Grammy here to help it was all I could do to rock one while the other sat in her crib and watched with glazed over eyes. We did this for a good hour and a half before they let me leave the room without a protest. Finally, asleep.

Not for long, of course. Adeline woke up drenched in sweat and crying once again. She refused her bottle and seemed to not want to move her arms. She was crying so hard that her lips were purple and face dusky. Back on the cannula she went. After further examination, I discovered her hands were purple as well. I quickly dialed up Dr. Chidekel and notified his office that we were on our way.

After a long afternoon, and a car ride that perked both girls up, we were back home. Adeline's lungs sounded good, her fever was gone and she appeared to be on the road to recovery. It seems that fevers can do strange things to your skin which answers why her hands were purple. Dr. Chidekel also mentioned that he was going to have to remove the "100 breaths per minute footnote" from Adeline's file as she no longer presents as a one pound preemie. He concluded that from a respiratory standpoint, no one would know she had such rough beginning. Yeah!!! Now she need to get on with those developmental milestones once we get back on her feet. Her lungs and heart are no longer holding her back which makes Dr. Chidekel hopeful about the summer ahead. We are both crossing our fingers that she does some much needed catching up.


Remembering a time when both girls fit in the swing :)

April. . .

Is quickly becoming my least favorite month. Looking back to last year, it entailed four trips to the ER and three hospital admissions.

Fate would have it that April didn't get off to a great start yet again. Both babies woke up with 100+ fevers and were extremely cranky. Not good timing due to the fact that we were headed out the door to our 18 month developmental follow-up appointment. It would seem obvious that we would reschedule but it takes months to get in and Daddy had rearranged his travel plans to go.

Surprisingly, Lila Grace held up rather well. She enjoyed the testing as a new toy was placed in front of her every minute or so. She focused, listened and carried out the tasks requested of her with little trouble. Lila received a glowing report and was right on target. She appears to be a typical toddler - funny, frustrated and and full of life.

Adeline, on the other hand, was not at her best. After waiting for Lila Grace to complete her one and a half hours of testing, Adeline took her seat at the table. She was clearly not feeling well but seemed in good spirits. However, she didn't focus and was unable to carry our many of the tasks. Some requests involved skills she has yet to master and others were ignored. She had the glazed over look and wasn't very interested in the objects she was asked to manipulate. I didn't think she did horribly, but I knew it was far from her best. The result, not as much progress made as we had hoped for.

Adeline has always hovered over the fence of normalcy. She drifted to the low end of normal during our last appointment and unfortunately, landed on the high end of "not normal" this appointment. Over four months time she only made two months worth of progress. Now whether or not that has anything to do with illness or the fact that she was asked to point to the spoon (something she has never really had fond feelings for due to her oral adversion) instead of an Elmo or a car, is anyone's guess. I think she could have done more, shown a greater understanding of questions asked and been more participatory had she felt better and been driven by motivating objects. On the flip side, Lila Grace did fine with the same tasks under the same conditions.

It is hard to know how to feel when walking away from that office. Last time, we were left with, "She is doing great, BUT you should have her see a geneticist." This time we were told, "We can't rule out mental retardation and probably won't know for sure until she is four and a half." Four and a half!!!!!! Do they think I can wait that long? I have been waiting 19 long and agonizing months for someone to tell me what her future holds. I don't feel like I have the patience to wait for THREE more years.

She Still Believes

The long love affair with Elmo continues. Yes, that is my oldest daughter who still wants an Elmo birthday cake, Elmo shirts (no character wear in this house unless it is on PJ's or undies) and Elmo toys. This relationship has evolved over the years. It began with red monster fascination and is now at the "I miss Elmo, Mommy. Does he miss me too?" stage.

See, Savannah believes in Santa, although his time is limited, the Easter Bunny and Elmo. Every other character or creature that she sees seems to be met with an understanding of make believe. Curious George is her favorite show but she asked long ago if there was a real George in the world with an "I know there isn't" undertone. She gets that animals don't talk, Charlie Brown is pretend and Princesses are just stories. What she has yet to admit to herself is that Elmo isn't real.

She desperately wants the big furry guy to come knocking on our door someday. She thinks he lives near by being that we live near Sesame Place - a Sesame Street Amusement park.

Years ago, I took her to see Elmo Live and she really enjoyed it. Fate would have it that Elmo visited our area again. She was so excited when she saw and advertisement for the show at McDonald's. She instantly started putting together a care package to take to him upon returning home. I had to cleverly convince her to mail it later as I knew we would not get the one on one time with Elmo that she was wishing for. Not only did she spend hours drawing pictures, making cards and decorating his box, she had to go shopping for his gift as well. Finally, the package was ready to go. I put it in the van when running errands with my mom, and told Savannah that I was taking it to the Post Office. My heart broke as I squished it into a trash can. All of her hard work and love, sitting in a McDonald's trash can.

I ended up taking Savannah to Elmo live and we really enjoyed ourselves. It was a small arena and we were able to see it all. She naively sat and waived to him each time he looked our way and asked why he didn't wave back a few times. As I sat there I saw parents and their toddlers (not 4 year olds) and I thought to myself, "Do I tell her?" How long do I let her believe? She is already requesting another Elmo cake for her 5th birthday. Are the kids going to make fun of her?

She is so sweet, sensitive and amazingly innocent for her age. I worked hard trying to instill these traits when she was young, I just hope they don't become her biggest enemy on down the road. This is a tough world to grow up in and Savannah takes everything to heart. Especially, Elmo.



The first Elmo birthday cake three years ago!

Happy Easter

Has it really been almost a month since I have posted? I must say we have been busy. Between doctor visits, figuring out our future (more on that at a later date) and taking care of the girls, I found little time to sit down.

Now that we are playing man-to-man (Grammy and Daddy have been in town this week) we have been able to do many things and go many places with the girls.

Being that today is Easter, it seems only appropriate to post some pictures from last night's egg dyeing. While Savannah used a less messy and more traditional approach, the twins were quite unconventional in their's. Possibly the funniest moment was when Adeline looked quizzically at her new green hands. I was quite impressed that she even took part being that she leans toward "sensory issues." We had a good time and we very thankful for the bath time afterward. I was MOST thankful that I wasn't playing a zone defense because the humor in the mess would have been much harder to find.












The Easter Bunny stopped by this morning and dropped off a few baskets and hid the eggs outside (in freezing temps!). The girls were quite excited when they woke up. Considering we were in the hospital last year with Adeline, almost anything would have been a step up from last year. Savannah loved her candy and the girls liked their new rides.






We ended our morning with an egg hunt. Savannah is an expert by now - lot's of practicing has taken place over the past couple of weeks. Lila Grace decided to take part but Adeline had no desire to be anywhere near the grass. Somehow it rubs her the wrong way even through the winter coat and shoes.







Happy Easter. I hope you are having a wonderful day with friends and family.

Third Child Syndrome

I have been meaning to get these pictures up. While Jeff (the girls' occupational therapist) was here last week, he worked on feeding. Much to my chagrin, he asked for utensils. Utensils mean mess in my book and I am already tired of cleaning two high chairs after each meal - I won't even go into my floor woes.

Of course, I handed over the spoons and bowls and watched as Lila Grace dove right into her food. It was like she had been secretly practicing behind my back. "She is ready," Jeff announces. Ready? Ready to make a mess and fling yogurt on the walls. To prove me wrong, Jeff dumped yogurt into the bowl and held the non-dominant hand as Lila scooped and fed the whole container of yogurt to herself. During this process, Jeff looks at me a bit puzzled. Clearly, he was waiting for me to turn this into a photo opt. I was thinking how nice it was to watch someone else feed my girls. Yes, I got the camera and took the pictures. Like all good mothers would do?

As I uploaded the photos, "third child syndrome" kept running through my head (yes, she is technically my third child - just not my smallest). This would have been big news in Savannah's life. Also, Savannah would have been digging into Yobaby yogurt while Lila got the cheaper and less organic brand - Yoplait. Third child syndrome or just tired and cheap???

Moving in the Right Direction

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.

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.