Another Rare Moment of Twinship

This holiday season I set two unbreakable snowmen out where the girls could reach. It was a constant battle of the wills but I felt like I had won. The girls knew they weren't supposed to play with my decorations. This, of course, is an attempt to reclaim my house. Lila has often picks up a snowman and then, when seeing me, immediately puts it down and acts as if she was kissing it.

I have left the snowmen out for winter decorations. I guess their will got the best of them as I came downstairs a couple of days ago and saw the girls sitting together on the couch (yes, much to my chagrin, watching Elmo.) It was pretty cute. Clearly, they were in cahoots. Lila immediately put it back.



Maybe next year I will be able to put decorations below eye level.

Down Right Unbelievable

Adeline Belle is out eating both of her sisters. Honest!! Ever since a I made a roast on Tuesday, Adeline has been eating up a storm. She ate the carrots, mashed potatoes and the meat. Then she followed it up with lots of my pumpkin bars - with frosting!! My mouth is still on the floor.

Let's just compare the typical day to her last 5 days of intake.

Typically. . .

Adeline picks at Cheerios or puffs for breakfast

Eats maybe a fourth of a sandwich and full yogurt for lunch

For dinner she typically eats about three bites of everything and never partakes in desert unless it is a green Christmas tree cookie.

(of course she has her Pediasure both morning and night)

Lately. . .

Adeline eats a whole bowl of Cheerios (independently spoon feeds it to herself without milk) and gets mad when I take her out of her highchair because she wants more and more Cheerios.

For lunch, Adeline spoon feeds herself a full yogurt and eats a half sandwich. She usually has a few crackers as well.

Dinner is absolutely astounding. Adeline is eating everything in her bowl and asking for seconds. Tonight, she ate 10 bites of steak, at least a third cup of mashed potatoes and a couple of bites of green beans. She proceeded to eat a 3" x 2" piece of pumpkin bars with frosting. She forked it all by herself.

I have gone from worrying that she will waste away to actually saying, "I hope this eating isn't going to make her fat since she is so short." I immediately recognized the absurdity in my comment but I really did say it out loud.

Does all of this relate to the dropping of feeding therapy? I guess it must. She is now a very INDEPENDENT eater that flips out if I touch her fork or spoon. She will spend 30 minutes working on a cup of yogurt instead of allowing me to help her spoon it out. In the past we have always fed her because she was so defensive with food that she wouldn't feed herself.

Possibly most shocking is that my girls have loved the past two meals I have made. Now that I am not shoving food in Adeline's face every two seconds, I have enjoyed WARM meals with my girls. I ate everything on my plate tonight which is rare and it wasn't even cold.

Thank God we have made a change in Adeline's feeding. Who knew it would make such a difference. Now we have to hope it sticks around.

On a different note, Miss Belle sported braids this week.

And How's it Working For You???

That was what our fabulous pulmonologist asked me when we were discussing Adeline's feeding therapy. Somehow we got on the topic when I had her in during her virus last week. After seeing that she had lost three pounds, I guess I was pretty focused on how many calories we should be packing in her on a daily basis.

I can't express to you how wonderful Dr. Chidekel is to my family. He has come to know us pretty well and understands our stressful circumstances stemming from Alex's job in Dallas. Dr. Chidekel knows how I operate and does a very good job of accomodating my need to know while trying not to tear me up or stress me out in the process.

During our conversation last week he said, "There are two things you need to accept. Adeline is going to always be small and she is NEVER going to like to eat!" I kind of blew him off with the eating and started questioning him on heights. He entertained me with his typical humor but helped me understand that she is a premature twin, which in his experience, always means short. Okay, I can deal with that. I actually like that she is so tiny now. We'll see how I feel about it in five years.

Dr. Chidekel every so delicately re focused the conversation on feeding. He asked me how "pushing" food on Adeline is going. I told him meals are the worst time of day for me and they make me cranky in all of two minutes. He then posed the question that lingers in my head, "Any how is that working for you?" I responded, "Do I have a choice? Adeline would starve if I didn't force food on her by tricking her toys and all sorts of distractions." He then pointed out the following:

Pediasure was meant to sustain her

Who cares if she drinks from a bottle - she doesn't

When she does care, she will be older and more able take responsibility for her intake

Is it a big deal if she drinks two servings of Pediasure throughout her childhood?

Food is a bit repulsive to her, it isn't her fault, it was caused by all of the crap she underwent it the NICU and. . . IT IS NEVER GOING TO CHANGE!

Feed her what she will eat because we are lucky she likes things like yogurt, chicken nuggets and bars.

The therapy should come later on when she has to worry about fitting in at the school lunch table, restaurants and at other people's dinner table. The therapy should be for her confidence not for her intake.

Obviously, the above was biased but he was operating under "full disclosure" as he has a son who has a moderate form of Dysphagia. He has worked through all of the above and seen that children are wired to be Dysphagic and that sensory/neurological piece can never really be changed. Thus, it is more about helping them to meet their caloric needs while fitting in with their everyday life. I should be trying to take the stress level down, not amp it up by trying to get Adeline to eat a piece of food that makes her want to yack!

Is it hard raising a Dysphagic kid? Absolutely, frustrating and infuriating at times. Is it worse to be the Dysphagic one? Most likely but we aren't there yet. Dr. Chidekel opened my eyes to what is ahead for us. Food is such a part of our culture. We celebrate with it and mourn with it. Adeline will do neither but need to find away to not make herself feel ostracized. I guess that is where I am going to put my focus.

We are dropping feeding therapy, going back on two bottles of Pediasure a day and offering her what we are having for dinner. If she wants it great, if not she can munch on cheerios. Chicken nuggets and whole milk yogurt will be well stocked in this house from now on.

Ear Infections

Both girls seemed to move from puking to ear infections. Adeline's ear was infected when I took her to duPont for a hydration check last week. It didn't seem bulging but definitely infected. We started her on drops of Ciprodex but it didn't seem to stop the explosion of gross goopy stuff. It was obvious she was in pain. She seems to be better now.

When I picked Lila up from school yesterday her teachers said she was very clingy and cried during gym. I knew something was wrong because I can safely bet on Lila loving gym time. Once I got her out to the car she started crying, tugging on her ear and pushing it into her car seat. What was concerning was that she didn't stop crying for an entire hour. I had to get Savannah from school and pick Lila up some meds from CVS before getting her home. She cried and cried and then resorted to hitting her ear. I asked her if she had an owie and she pointed right to her ear and cried harder. In that moment, I was glad that I wasn't a typical parent who would have to take their child to their Ped for antibiotics. Our pulmonologist always supplies us with refills and they are to use at our discretion. By the time I got home, the Tylenol I had given Lila in the car kicked in and she passed out in my arms. It must be a pretty fierce ear infection because she woke up after being down for two hours last night crying out, "Mommy, owie." Most likely she will be going under with Adeline in March for new tubes.

Snow Day Again,

No school today. I put on my patience hat and bundled all three girls for the first time myself. It didn't end up being that bad. It was nice to enjoy all three of my girls in the snow together. I was pleasantly surprised when we stayed out for over an hour! Unfortunately, Lila Grace has a pretty bad ear infection and was saying, "Mommy, owie ear by the end of it.

Worried Again

Recently, I have been less positive on our Belle. Developmentally, she had a good fall but winter has been different. I feel as though she is withdrawing from her sisters. She used to be in the mix and try to do what they do, but now she doesn't show interest and does her own thing. Her own thing would be great if it didn't always involve trying to find Mommy to hold her.

Adeline would like it best if I were reading her books. Great, you might say, "She likes books." Well, it is different than just liking books. She likes the same books over and over again doesn't finish the sentences like a typical 2.5 year old would do. She also should be engaging in her world differently, not doing the same things she was doing four months ago. The books of interest should be changing.

In addition, Adeline has become very defensive of Savannah's help. She used to crave attention from Savannah and now she is angered if Savannah sits down to play with her. If Lila comes around she is furious. She doesn't want anyone touching what she is playing with. "Typical twos, right?" Not really, because there is the terrible two component but that isn't 24/7. This is all day every day. There should be times when she can handle an activity I facilitate that involves her sisters. She should be able to tolerate Savannah's touch. Savannah and Lila Grace are becoming the best of friends, leaving Adeline where she wants to be. By herself!

More to the point. . . She SHOULD see what Savannah and Lila are doing and show interest. She SHOULD follow Lila and I on a walk around the cul-de-sac (today she didn't even want out of the garage). She SHOULD want what I give her sisters. But, she doesn't.

It is like she is trapped in her own little world. Don't worry, I am not hinting at autism. What is strange is that when therapists come and on school days, she is fantastic. But the minute is back home, she is doing her own thing and not wanting anything to do with her sisters. She is impatient, frustrated, cranky and not a lot of fun to be around these days. I am reminded by Alex, the overly optimistic parent, that Lila was cranky and big pain in the rear end for months on end. True, but she was still very engaged with her sisters and making progress along the way.

So what does it all mean? Why is she pulling away and uninterested in others? Why is she stuck in rut? Why is she tuning me out? I wish I knew. I have been giving it time to see if it would pass and it hasn't. We are going on at least a month of this now. I just need it to pass so that every time her sisters and I are engaged in some crazy, fun and loud activity while Adeline sits on the floor and looks at books, I don't think to myself that she is losing her shot at normalcy.

Rejoining Society

A few moments worth photographing during our week of illness. . .

Right in the heart of Adeline's illness, she found the energy to follow Lila downstairs and into the office where I had pulled out last years clothes for ebaying. Each reclaimed their hats and were sitting in the dark (the flash lit things up), side by side with them on. Adeline's hat pretty much tells how she was feeling. I rare moment of quiet "twinship."

Literally hours before I was taken down by the illness, I found a great buy at Target. A tent and sleeping bag for less than $8.00. I worked hard to ignore the "character factor." I was just thinking about transitioning Savannah to a sleeping bag for the beach this summer and figured this would be a good trial run. We brought it home and Savannah packed up for a pretend camping trip, food and all. The camping trip was cut short by her need for a very long nap.




Here are a few pictures from yesterday where we all pretended to feel fine, put on normal clothes and ran errands. We were completely exhausted when done. The pictures are proof that we are on the road to recovery.