Another One of Those Days for Adeline

Today was a terrible day for Miss Belle. During her physical therapy, an orthotist came by to measure her orthotics and stretch her calf and ankles. He was looking for symmetrical range of motion. Of course, Adeline screamed because she hates being manipulated. It is really hard to get a good feel for her range because she fights it so much. The conclusion was that she is tighter on one side. According to her PT, it is slight but the orthotist seemed to think it was significant.

He is a really nice guy but he really needs to watch his delivery. After stretching her he asks, "What is the diagnosis?" I just want to scream - THERE IS NO DIAGNOSIS!!! Do people not get there she can be delayed without a syndrome or a condition? It told him she was a preemie and he said, "That's it?" I am sitting there wondering, does she really look that bad? Does she stand out like a sore thumb? We don't get "the look" from people in public (at least not any more because there isn't a cannula taped to her face). How does someone who doesn't know her presume that there is no chance of normal?

The orthotist made the recommendation that we start stretching her at night in order to loosen her up. Thus, she will wear braces that go up to her knees and hold her ankles static (most preferable beyond 90 degrees). Joy oh joy. She is really going to like this! What is even better is that he had to cast each of her legs to fit her for the braces. Well, as you can imagine, having a cast put on her legs while they are bent in an uncomfortable position (let's not even go into the sensory component) made her irate. She was crying so hard that he she wasn't keeping her sats. It was beyond anything I have experienced in some time. I was the lucky one holding her in my lap. It was truly miserable and brought me right back to the NICU and past hospitalizations. There have been so many times where I have held her down for terrifying and painful procedures. It was much easier when she was little (never easy but not nearly as hard as today) because I didn't see the shear terror in her eyes piercing my own.

It is times like this that I want to scoop her up and run away. Enough is enough. It seems like positive yardage always presents us with a new problem. For example, she is walking very well now and able to use both legs with symmetry. It took a long time for her to accomplish this. Shouldn't this mean the intervention backs down? Not in Adeline's case. Because with walking behind us we are now focused on tone and her latest trick, toe walking. We always seem to ramp it up. Here we go gain. New orthotics during the day and stretching braces at night. When will it end for my sweet girl?

This miserable hour during our morning set the tone for the rest of the day. She has been quite miserable for the past couple of days (most likley the result of a flu shot) so this morning was like a double does of hysterics. We went to Hippotherapy tonight and had to cut it short because she was a blubbering mess. It is the first time I have every seen her come running to me in tears. Usually, she finds her bunny and waits for me to come to her. She was so upset when she turned the corner and saw me waiting for her. I hope this doesn't screw up Hippotheraphy. Once something rubs her the wrong way, it takes a long time to get her going on it again.

Tyler Arboretum

This post is very overdue and would have been skipped had I not recently come across these crazy pictures of my very CRAZY Lila Grace.

We had to opportunity to see a tree house display at our local arboretum about a month ago. The weather was wonderful, daddy was home and the Anstines were able to join us. The girls had fun running around in large open spaces, Alex and I enjoyed nurturing our need for outdoor time and Savannah had fun examining the tree houses paying careful attention to the details. Our favorite was the last tree house which had bells attached to ropes that the kids could pull.

Here are some pictures from the trip. Check out Lila Grace when she comes down the slide of a tree house.

Tired

Need I say any more?

Hippotherapy

Adeline started Hippotherapy last week. This involves riding a horse (full size) while a lead walks the horse around the rink and physical therapist positions Adeline. It sounds rather simple and at first I asked myself, "Is this just a trend?" but once seeing it - I BELIEVE. I was in awe of how right it seemed for Adeline. These horses are so docile that they allow the kids to snuggle in. Of course that is the last thing Adeline wanted to do to a horse's head considering the head is bigger than her body and very hairy. She must might be the smallest kid they have had up on a horse (they start at age two). It almost seems like these horses are rooting for the kids they carry.

The biggest struggle for Adeline was the helmet. Not a surprise considering a lot sensory issues stem from her head. She growled and eventually screamed when Miss Alana was trying to get the helmet on. I told her to go ahead and shove it on because Adeline is never going to just allow it. She did and there were screams but the screams disappeared the minute the horse started moving. All the sudden the disorganized and very stressed little girl was quiet, focused and working more muscles than she knew she had. There is something about watching your tiny 20 pound child on top of a horse that makes you realize how physically demanding it is for her to counter the horse's movements in order to maintain balance.

Once she was settled I left the rink and went into the observation room. As I watched from a distance, tears filled my eyes. Here is my sweet Adeline sitting on a horse, which she would never want to be around if she had a say, cooperating, and suckering those around into loving her. The women who were working with her couldn't get enough of her sweet disposition and social smile. Somehow, the horse was symbolic of Adeline's world. So big, scary and constantly moving. And there was my girl going with the flow, working hard to stay afloat and not bothered that she has to work twice as hard as the next kid to find her way in this world. I love her for that! If there is a perfect disposition, she has it - hands down.

Drowning in my Kids

I had a conversation with a woman I recently met. She has a son that has issues but does not have a diagnosis. She has put her life on hold and is desperately working with therapists and doctors in order to fully understand his needs. Of course, this bonded us immediately as I feel that I am doing the same thing with Adeline.

She mentioned in an email that I had said, "I am drowning in my kids." I don't remember saying it but when reading her email, the phrase struck me at my core. I am trying everyday to give my children all that they need. Unfortunately, they need more than most children. I end up orchestrating a juggling act between therapy, appointments, therapy centered play, and just enjoying and loving my girls. Drowning is right! As I continue to strive for a balance, I am beginning to realize that balance isn't the answer. It just seems to be the first thing out of everyone's mouth that recognizes the difficulty of our situation. There is always need for more therapy, medical opinions and evaluations. My girls could use a great deal more from me in the therapy centered play and of course, the one that beats me up most at night is the too few moments of just loving my girls. If I really want to balance this, then all areas are going to be cut back. Clearly, there is need for more of each so really what we all need is more daylight hours, patience and money. Daylight hours so that we can squeeze in more play and therapy in one day. As it is, I can barely fit all of their therapists into a week. I find myself ready to sit down and hold and love my girls at 7:45 at night when they are already late for bed. More patience is like stating the obvious. I can only do something for so long without getting annoyed that my child isn't cooperating, or that another child is trying to pull me away from what I am trying to accomplish with her sibling. Finally, more money. Yes, money. There is a need because alternative therapies aren't covered and the top doctors that see special cases like Adeline are often not considered in-network. We just scheduled Adeline to be seen at the Kennedy Krieger Institute where you pay upfront ($1500 that is) and pray that your insurance kicks in retroactively. So no, there is no balance. There is always a need for more and balance isn't the answer. All, balance does for me is find away to fit a little bit of everything into a day. I still go to bed feeling that everything we do is just inadequate. I just can't come up with a "fix."

Ultimately, I am drowning in my kids.

Apple Picking

Due to our amazing fall weather, we were able to get out early friday and pick apples at Highland Orchards. Picking apples with three young children is interesting. Lila Grace found one apple on the ground and had to hold it the entire trip. This made it very hard for her to pull an apple off the tree as she needed both hands. It took her a very long time to give up her apple in order to pick another and put it in the bag. Savannah enjoyed herself but was a bit frustrated at first when all the apples were out of reach. Eventually, we found a patch that both she and Lila Grace could reach. Miss Adeline was a completely different story. For her, standing and walking in the orchard grass amongst apples that were rotten was about all she could handle. I would pull a branch out to her that was pretty clear of leaves but she would have nothing to do with picking the apple. Too much to quick.

As for the apples themselves, they were delicious. Savannah and Lila couldn't get over the fact that they could pull tiny apples off of the trees and just bite right in. They loved it. Adeline was skeptical. I finally got an apple up to her mouth which gave her a chance to taste them. You could tell that her brain wanted so badly to take a bite but her body was overloaded by the wet, rough feel of the apple. She would lean in and then once a half inch away from taking a bite, quickly pull away. These are the moments that remind me she has a lot going on inside her. Managing it is taxing and often she just gives up as she did on the apple.

Farm Fresh Apples

Now that the nights are cooling very quickly, we are sent inside much sooner than we are used too. Instead of heading up for a bath the girls are starting to take to a before bedtime snack. Being that we are on the veggie or fruit snack protocol, we are enjoying freshly picked apples. Of course they are loaded with warm caramel and yummy whipped cream (I can't be too much of snack Nazi). These apples are so good that even I am asking for more when the bowl is empty.

Lila Grace sits at the island like a big girl now. It is so nice to be high chair free for the 15 minutes. Unfortunately, my island only holds two stools so Adeline is still stuck in the high chair. I don't think I would trust her in a stool anyway (they are backless).

We sit, the girls make funny faces and enjoy feeding one another. They all like watching the whipped cream come out of the can. It has been a nice routine for the past few nights and I am hoping it will carry us through the dark dreary months that lie ahead.

Just for the record, these pictures are of Miss Grace smiling on command! I wish she would do it every time.