Kennedy Krieger Institute

I realize it has been over a week since we arrived at the Kennedy Krieger Institute but time flies these days. I wanted to give myself time to digest the conversation we had with Dr. Hoon about Adeline's development. Honestly, I haven't really had time to sit down and think, something I miss these days.

Adeline's visit was more than positive. When Dr. Hoon entered the room he saw Savannah sitting on my lap. He asked if it was Adeline with a quizzical look on his face. He proceeded to note my concerns about Adeline and why we were knocking on his door. I relayed her prematurity, many delays and processing issues as concisely as possible. While Dr. Hoon was combing over Adeline's NICU discharge summary, Adeline and Alex came strolling in, Adeline pushing a doll stroller. She was all smiles and very active. Dr. Hoon was immediately impressed and noted that she doesn't reflect her very precarious and rough start in life.

Dr. Hoon asked Adeline questions, performed a physical exam and watched her interact with all of us in the room. Before he could ask her to point to certain pictures on his cards, she was pointing and labeling herself. He found her social/emotional skills on target.

After spending an hour with us, Dr. Hoon addressed Adeline's therapeutic needs, medical needs and more than likely, educational needs. He didn't tell us anything we didn't already know.

Therapeutic Needs - He believes that we are supporting Adeline sufficiently. He warned against chasing down every alternative therapy that claims it has been show to improve the lives of children like Adeline. He was supportive of speech therapy on the horse. Dr. Hoon thought that my idea, of mainstreaming Adeline for two days of preschool and sending her to the IU (special needs preschool) two days a week, was realistic. Of course, we will have to see what happens during their transition when they turn three.

Medical Needs - Dr. Hoon made it clear that looking for developmental pediatricians to inform us any more than we already are, is a wasted effort. At this point, we should wait until Adeline is five and have her seen by neuropsychologist. At that time an MRI will be done, IQ testing and other standardized assessments in order to identify learning disabilities. This is when my concerns about processing will most likely be confirmed. Until then, we wait. We are going to have a traditional MRI done on Adeline just because Dr. Hoon specializes in reading MRI's of children that are born prematurity, with CP or with other neurological impairments. We aren't going to have his "specialized MRI" performed because it takes a day and a half to read and he is out of network with our insurance company. The thing about an MRI is that it doesn't change anything. The brain is structured and there is no re-structuring to be done. Dr. Hoon believes that if this MRI was done, it would identify areas of the brain that are structured differently. Because Adeline was still laying down brain tissue in the NICU, her neurological system is certainly at risk. Hopefully, after sending Dr. Hoon our standard MRI results, he will not see anything that stands out.

School Needs - I have always thought it safe to say that Adeline will have IEP's thorough her school years. Along with Dr. Hoon, I am hopeful that she will mainstream with support. No one has given reason to think she will not. Learning will most likely be difficult and frustrating to Adeline. Her processing and sensory needs will have to be met which is easier said than done. I have worked in various schools and know all too well that IEP's sit in a file and are often neglected except when giving tests. I don't look forward to the inevitable uphill battle with the public school system. That being said, I have high hopes for Adeline and her schooling.

Dr. Hoon concluded that Adeline has many delays. Her cognitive skills are low but may eventually fall in the variable range of "normal" cognition. Only time will tell. In order to support Adeline as she travels a very long and uphill road, Dr. Hoon left us with this quote:

Childhood is not a race, but a journey.

Potty Training on Hold

Yep, that is the consensus after three whole days without diapers. Day one was pretty messy. Day two was without an accident. Day three was a mixed bag. What was noticeable, was that Lila had to sit for long periods which was coupled with high anxiety when she had the sensation of "going." The few drops in potty after each fuss told me she was trying hard to hold it in. Eventually, she would relax - 45 minutes later. I have to give her credit because the girl will sit, and sit and sit and sit etc.

Alex and I both think we made progress but Lila's demeanor certainly did not. She finally broke down tonight. She flipped out in the bath (her favorite, cry free zone) and was crying on and off while getting PJ's and stories underway. She went down for the night crying as well. To top it off, she is super snugly and obviously seeking some comfort.

I think she has been under a lot of stress. Staying home and under the potty gun was not her idea of a good three days. Not mine either. We are going to back burner it for another couple weeks and try it again. No need to stress the poor girl out. To be honest, I would much rather wipe stinky bottom than be startled by a little brown monster looking back at me in her potty. Too much, I know.

A Special Visitor

Henry came to visit today! He is Charlotte's younger brother (all of 19 days old). Luckily, he was able to make it to 35 weeks which allowed him to weigh in at 6 lb. 3oz. He is quite a success story.

I just love this baby. He is so tiny and precious. I have been anticipating his birth for so long now, not knowing if he would make it to term. Well, he came pretty darn close.

Henry makes me wonder how I felt that the girls were big when they were discharged. They were a pound smaller than this little guy. How quickly you forget the sensation of holding a one or two pound baby. I know I recently posted how Adeline just "stuck" when I held her on my chest. What I can't visualize is her hand or her tiny nose and mouth. I was so troubled when looking at the girls early on. How on earth do I not have the sight of them so small seared in brain? Then again, what really baffles me is that the girls were between 10 and 12 pounds on their first birthday. I see babies that big all the time and they are tiny infants in an infant carrier. Lila was standing and Adeline had just started sitting up. They must of appeared so odd to the outsider. I must say, you don't see a 12 pounder cruising furniture and a 10 pounder sitting up.

How quickly I have forgotten when I promised myself I never would. It was what I was going to hold onto when success wasn't as rapid as I would like. Remembering how small they started out would justify missed milestones etc. I guess my girls have grown and I have grown as well. I no longer need to use their size as an excuse or justification. I am working hard at not measuring them against the rest of the world and just letting them be who they are. After all, they are much more than I ever dreamed they would be.

Welcome to the world Henry!

Before and After

I took Savannah to get here hair cut today. Her hair was extremely long and messy. We have only cut it four times at the most. She was very cute when she told me she wanted it longer than her friend Jillian's but not longer than her friend Katie's hair. We cut about four inches off and it feels much better. The strange thing is that most people wouldn't notice. I sure did as we walked away from a pile of bleach blonde hair. She will have to work on getting those highlights back this summer. As we left Savannah asked me if she looked like Adeline. Before leaving, I randomly did the same hairdo on Savannah as I did for Adeline this morning. The Belle has the longest hair now.

Before. . .I know, hard to tell how long it really is. Let's just say it was pretty long.




After

Giving the Potty a Try

This is what I saw when I returned home after a fantastic shopping trip. A local Acme is closing it's doors and everything was at least 50% off. I took a picture of my gigantic pile of groceries because it was such a steal. DVD's for $1.25, Pull-ups (88 of them) for $5.oo, well you get the idea.

Back to the scene at home. When I get to the top of the stairs, I see Alex and Lila sitting and watching Duke basketball. Lila was on the potty. She was pretty excited to show me her pee-pee as she stuck her head almost completely in to make sure it was still there. We are taking the diapers away, with exception of naps and nights for the next three days. That is about as long as I can keep her physically at home. We will see how it turns out. It has to be all or nothing. I can't center my day around asking Lila if she has to go potty or running to public restrooms. She seems to be showing readiness. Whenever she "stinkies" she runs to her daddy if he is home. I guess he has a better diapering technique than I do. It certainly doesn't hurt my feelings. If I ask her if she stinkied, she says no and tries to blame Bunny, Ernie or whoever else is in her line of vision for the smell. I guess time will tell if she is really ready. Wish her luck and me patience.




Of course I had to include the picture of my stash. The keyboard was $2.50!

A Far Cry From 2.5 Years Ago

I was getting ready to update about yesterday's appointment when I glanced at the picture of Adeline passed out on top of me. It reminded me of holding her in the NICU. I would get her snuggled up on my chest and pretty much be hands free (except for tying to manage all of the cords and tubes). She wouldn't go anywhere. It was so strange that she wasn't heavy enough to slip down. Whenever I would hold both of the girls I would have to support Lila but Adeline would magically stick. I also remember fitting my thumb and middle finger on either side of her and having lots of room to spare. Kind of like wrapping your hand around a water bottle that is flush with your chest, but much smaller. Gosh, we have come a long ways. Here is a picture of her just a few weeks before discharge. I guess she had grown enough and needed me to support her. How did she get so big?

Just to reiterate. . .

Kennedy Krieger Institute

We just got back from a seven and a half hour trek down and back to Baltimore's Kennedy Krieger Institute. It was a long day but Adeline was a star. She was going on day two of no nap. Yesterday, Adeline was at duPont all afternoon for a cardiac appointment. She underwent a EKG and Echocardiogram for her heart. Savannah came with us today and Lila Grace stayed at Miss Neely's -God bless her for offering to watch my kid for 7+ hours when she has three of her own.

Everything went well. I will give more details later. Just wanted to let everyone know that we walked away without a diagnosis!! The doc confirmed my hopes. No one would look at Adeline and imagine she was born at 1.0 pounds. She has a full life ahead of her. I couldn't be happier.

The Belle is pooped!

Our Week in Ten Pictures

These items all made it into Lila Grace's crib this week. Each day she picks something new to sleep with.
Bananas are better when turned into snowmen


Lila was very tired and snugly this week. I guess when mommy doesn't have time, a basket will do. She didn't want to come out!
Adeline has rekindled her love of Giraffes


Savannah is teaching her sisters to carry around more than just their Bunnies. She lined up all of her guys for a photo shoot. She is getting pretty good with the SLR





Valentine's Day morning. Excuse the hair - we didn't get that far before the girls discovered their gifts.



We were lucky to have our friends from New Mexico with us this weekend. Steve, Heather and Baby Kate made our weekend that much more enjoyable. Lila keeps asking, "Where did the baby go?" "Night night?"

Valentines

This isn't something I usually post about. I figure people have enough creativity and certainly aren't going to be better off for having heard about mine. My crafts aren't noteworthy unless they are created with a mouse :) However, making Valentines with my girls this year was quite an experience. First, I did it when they were awake. Second, they actually helped. It was a big first for me. Their attention was held, their effort was was admirable and, overall, it was a big success.

I hesitate to say it, but the experience was huge realization for me. Oh, I really don't want to jinx it. . . but I will say it anyway. I THINK WE ARE FINALLY ON THE ROAD TO EASIER, NOT HARDER. For the past two and a half years, I have tried to hold my head high with the full understanding that things are hard, going to get harder and stay that way for a really long time. I remember Alex telling me about conversation he had with a dad of twins (twins were normal and term). The dad told Alex that the first TWO years are really hard. I was holding two five month old babies at the time and was instantly deflated. "Was it really going to be years?" Yes it was, and has been. But now, and not before now, I think we are on the uptick. The girls are finally able to participate, understand what "no" means and spend lots of time in "time out" when the world isn't going their way. Things are working well for us and I finally have tangible evidence to prove it. All three of my girls had a hand in this year's Valentine making.

The details

Find a Wilton heart mold, must be rubber and flexible

After removing wrappers with an exact o knife, break up CRAYOLA (don't cheap it up here) crayons into each heart

Back at 350 until melted.

Let cool and remove

Create a hole - forget using a skewer, a drill is much better

Adhere to card


Finally, build an island that seats THREE

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.