My Love Hate Relationship with Rae's Corner Chair

I love Rae's corner chair!

Rae sitting with support from
Her sandbags. See how she is
tilting her head back.

It enables her to sit up straight. She is not able to lean into her "C" curve caused by Scoliosis. There is a tray from which she can eat or play with toys (most of which end up on the floor). It's on wheels so it can go anywhere in our home. It was loaned to us by our PT (which saved us from buying one to the tune of $500). When she sits in it, she is at the right height to watch her favorite cartoons (Curious George, Cat in the Hat, & Sid the Science Kid...basically anything on PBS) and doesn't have to tilt her head back to see. All in all, it helps her gain more strength in her trunk which will further her development.

But...here's the problem...

I HATE's Rae's corner chair!!!

I know, I know...after all those wonderful reasons to love the corner chair I still HATE it! I hate putting Rae into the bulky contraption. I hate that it is the only piece of special needs equipment we currently have in our home. Almost every time I look at it sitting in the corner of our living room I suppress the urge to toss it out into the yard or weep. I see that chair and I see how different our life is from what we hoped it would be. I HATE that chair for purely emotional reasons....logic be damned!

Rae sitting in her Baby Snug watching
PBS & rocking her glasses.

For months no one even knew that we had a corner chair because I silently refused to photograph Rae sitting in the dang thing (heck, I didn't even want to sit her in the chair and found every possible excuse not to). When I did start taking pictures, I refused to post them anywhere. I was in denial. If no one else see's it then it doesn't really exist. I pushed the chair into the farthest corner of our living room just so I don't see it when I look around the room. I become so frustrated strapping her into the chair because it's like fighting an octopus...she wants to eat the straps and mean ol' Mommy wants her to leave them alone (her arms, though weak, are very quick). This battle alone can motivate me to raise a white flag and/or reduce me to tears. I scoured the internet for other options (I bought a Mamas &Papas Baby Snug) that were more palatable to my tattered emotions. All for what??? A false sense of normalcy...that's what!

Now, here's where I become a mature, do what's best for your child, parent.

Rae with our PT playing with playdoh.

I put Rae in her corner chair. No matter how I feel about it on any particular day, I know it is what is best for her. I wish I could say I was more consistent and I sit her in the corner chair every day, but I don't. At least I'm trying and that's the best I can do. Sometimes that's the best any of us can do...just simply try. The corner chair is OUR normal and I am finally finding some peace with that.

Rae sitting pretty in her corner chair.

8 Degrees

My gut was right again. I'm starting to get really tired of being right, which is a big deal coming from a family of Germans who are "always right." I think, more than anything, I'm getting tired of being right about the bad stuff. I was right about Rae's physical development being off (Hypotonia), I was right about her having Infantile Scoliosis, and now I was right about our follow-up not baring good news. I've been right about equally upsetting things recently as well, but that's a whole other story.

Yesterday, Rae had her follow-up visit with Dr. S, her Orthopedist, and I would have loved to come home and report that her Infantile Scoliosis was maintaining or regressing below the initial 20 degrees that was reflected in her x-rays last September. However, that is not the case. The "C" curve has increased by 8 degrees with a +/- 5 degree margin of error. In which I find no comfort. Now, I know that doesn't sound like much, but when your looking at a condition that slowly progresses with time and more rapidly with every growth spurt and your child is only 17 months old...well that's just a tad bit upsetting.

To make matters worse, information my husband and I have read doesn't offer a positive spin on the less invasive forms of "treatments" for scoliosis. This has been reinforced by Dr. S, who didn't feel like the options available would be of any true benefit, but he's open to suggestions or, if we press it, placing Rae in a brace and/or authorizing more therapy. We also have to consider the effect a brace could potentially have on Rae's physical development in relation to her Hypotonia. If the brace keeps her straight and holds her in place then her muscles wouldn't have to work and would not become stronger. It's a double edged sword. The whole thing just feels hopeless and, while I know it isn't, I feel like I'm ready to grasp at any straw presented that may offer some benefit. Notice, I don't use the word benefit instead of cure because much like her Hypotonia there really isn't one.

Dr. S believes, since Rae is Hypotonic, that her Infantile Scoliosis is actually Neuromuscular Scoliosis. Okay, well that's just comparing a Pink Lady apple to a Sundowner apple, both apples have a similar taste and come from the same fruit parents (Golden Delicious and Lady Williams), but their color is slightly different. Similarly, there is no real difference between Idiopathic Scoliosis and Neuromuscular Scoliosis other than the cause. The treatments for both are the same and vary depending on the degree and type of curve.

So here are our options (listed in order of desirability):

• Observation - Which is what we are currently doing and it isn't really recommended by other medical professionals since it delays treatment.
• Therapy/Exercise - We are already have PT in place and Anna and I will be discussing this new development tomorrow. Exercises will have to wait until she is older due to their physically complicated nature: Scoliosis Exercises.
• Chiropractic - My husband is not a huge fan of this option, but I'm willing to give it a go.
• Homeopathic Alternatives - Like the Bach Flower, which is only one of many, and I have my Aunt checking into these options (she has a Doctorate in Homeopathic medicine).
• Bracing - It's like encasing your child in a turtle shell. Here's an example: Providence Brace or when they are older this form may be an option Spinecor Brace.
• Casting - Which varies depending on the type of curve and is usually done in case where the child is young (toddlers). Dr. S doesn't recommend casting and it can be quite the ordeal as evidenced by fellow blogger Emily, who writes about her son, at Infantile Scoliosis - J's Diary.
• Scoliosis Boot Camp - Which utilizes various manipulation contraptions to readjust the spine and correct curvatures. This isn't a possibility until she is older.
• Surgery (just a short sample of surgical options)
• Spinal Fusion
• Harrington Rod Surgery
• Vertebral Spine Stapling

In light of this news, I am going to make every effort manageable to be proactive and try to keep a positive outlook. Keeping in mind that I must also be realistic (I have already reviewed the application for the Shriners Hospital for Children). I'm so thankful they don't take household income into consideration or we'd be screwed with a capital "S". In addition, I am going to do my best to see the good things, not just the bad, and take comfort that I have wonderful family and friends standing beside us every step of the way.

To quote my Mom:

"Damn, that can be depressing, but that's counter productive and I choose to be resolved (right after I scream). We are all in this together. We can do it." 

A Cat-astrophe!

Some relationships that develop while learning how to navigate in the world special needs will become significantly more personal than others. You may not feel as close to your child's Ophthalmologist as you do their Neurologist. I think it would depend on how often you see that particular specialist. In my case, I have become very attached to Rae's physical therapist. We met Anna through Early Steps and while I was nervous about having a new person come into our home every week that apprehension quickly faded away. Now I look forward to hearing the buzz of our doorbell every Wednesday morning. Unfortunately, our patient/therapist relationship isn't without some kinks.

Tummy time with Anna.

During our initial meetings with Early Steps, I made mention that we were the owners of three, strictly indoor, cats. That means we have cat dander and hair pretty much all over the place. I wanted them to make note of this so we could be matched with a PT that didn't have allergies, especially to cats. In an effort to stress this feline fact, I mentioned at least three separate occasions. Satisfied that I did my part to avoid developing an attachment to someone that couldn't stay I put the potential catastrophe to bed and moved on. Imagine to my surprise, after waiting for two or three weeks for Early Steps to find a PT, when I first spoke with Anna and once again asserted that we are a feline friendly home she admitted to being...you guessed it...allergic to cats!! Like you didn't see that set-up coming a mile away.

Tigger

Houdini and Moo-Shu

Aaaarrrrrggggghhhhhh!!!!!

Well, she was still willing to give it a try and I was determined to do everything I could to make her comfortable outside of getting rid of our cats or pumping her full of Benadryl the minute she set foot through our door. So, every morning before Anna arrives I vacuum our entire living room (including the furniture), chase down the hair balls which seem to multiple over night, and corral the cats into our bedroom. This effort has been richly rewarded by no incident of an allergy flare-up. That us until recently...of course.

Anna and Rae working on head control.

During the holiday season, when everything is hustle and bustle, I was not as dedicated to making sure the above noted measures were completed prior to Anna's arrival. The first week she made no mention of it and everything appeared to be going as usual. The second week the sneezing began and I ended up hunting for tissues. I vowed that the next week would NOT be the same and I would do everything that I usually do to make sure she was comfortable. I was overwhelmed with contrition and apologized profusely for my lapse in housekeeping.

Well, that weekend I received a call from Anna...I was dreading that call because in my gut I knew it wasn't good. She said that for two or three days after her visits she experienced discomfort caused by our cats. I felt horrible and then afraid of losing her. She offered to try another week or we could contact Early Steps and inform them we needed a new PT. Panic was beginning to wash over me. What if they couldn't find someone for another two or three weeks? Who was going to work with Rae? What if the new person doesn't like us or we don't like them? What if they heap loads of guilt on top of the already gigantic pile of guilt I already feel over my perceived lack of follow through? I can't loose Anna!

Rae and Anna playing in her sensory box.

Ultimately, it is not my choice. It is her and that is what I told her. I don't wish her to continue coming here and being uncomfortable for days after. I reassured her, yet again, that I was willing to give it another try if she was comfortable and also willing.

Our next visit went better and even though I am recommitted to making this relationship work I feel like we were just handed our two weeks notice. I don't think I will be completely confident that Anna isn't leaving until another month has elapsed. Here's to my New Years Resolution: keep things clean and contained for Rae's sake. I really don't wish to start over with a new PT.

Venting and a Hot Shower

Sometimes I am not a well adjusted Mom. I have been known, on occasion, to join Rae during one of her screaming fits or cry while I hold her when there seems to be no end to her tears. It stems from a deep seeded frustration over not being able to figure out what she wants or needs. Sometimes it feels like she is doing it just to throw a wrench in the cogs (which is silly to feel). It sucks!

I am sure most parents out there can relate to this overwhelming sense of agitation and helplessness when faced with an unconsolable child, but there has to be a better way to deal with it than joining in Rae's temporary madness. Lately, it has been happening in the morning during breakfast and again an hour later.

Currently I have four options (not in any particular order after 1):

1. Run through the check list (clean diaper, hunger, thirst, pain, gas, temperature, etc...). I always do this first in hopes that I can nip the fit in the bud.
2. Lose my cool and screech along with her singing a tune no one wants to hear.
3. Place Rae in her crib, shut the screen door, and seek refuge in the peace of a hot shower.
4. Open up the waterworks and have a good crying session.

I feel horribly guilty when I opt for the second and third choices.

Once the checklist has been exhausted and the fit is still moving ahead at full steam I continue down the list and decide on the next plan of attack.

Screeching like a bird with her is counter productive for both of us. It doesn't make the frustration stop nor does it truly offer any sense of relief...only more frustration and guilt over screeching like a mad woman. So, now I am trying to curb this ill advised, ineffective behavior and have sense found other options better suited to our needs.

Leaving her to fend for herself and teaching her to "self soothe" can be equally stressing because I want to be there for her. I want to hold her and tell her it will be okay. Wipe the tears from her cheeks and make whatever ails her cease. I want to fix it! But I can't. There are times when it just seems best to let her vent. We all have to vent sometimes and Rae is no different. When all other courses of action have been tried and ended in failure, then it is time to let her scream it out. Eventually, she falls asleep, usually after I hop in the shower, and when she wakes up from her nap all is right in the world again (or at least in our home).

Since I'm a firm believer in the cleansing power of good cry, I don't have a problem joining Rae when she is on a tear bender. Of course these occasions are few and far between because the incessant crying has to go past an acceptable (in my opinion) fifteen or twenty minutes and usually no one else can be around to help alleviate the pressure (Dad or Mimi). Eventually, we both calm down and are able to move forward with our day.

I frequently utilize the third option...letting her vent. There is no sense in my fuse blowing because hers has already blown. After I have exhausted the checklist and if I'm not in need of a cry, I leave her to her own devices. She mumbles, whines, screeches, cries, and cusses me out in her own adorable baby talk fashion. We are working on finding and teaching her different ways to communicate more effectively (sign language), but until then we're going allow her the time to vent and I'm going to take a nice hot shower.

Here's a mealtime fit for your viewing and listening pleasure...