Denial-What is it good for?

I struggle sometimes to balance my want to live in denial with my NEED  to keep a positive but realistic outlook. I want to ignore  to vehementantly deny the possibility that my son might have delays and special needs for the rest of his life. But, I can tell you one thing that I have learned in the past 6 months...having a special needs child radically changes YOUR life....even if his "specialness" is just possibly temporary.  These radical changes permeate more than the big picture aspect of your life. Even the mundane day-to-day living has become completely different.

Almost everything I do with Nolen is calculated, from how I try and pick him up by coaching him from laying on his back onto his side, then to sitting as opposed to just grabbing under the arms and going  to how I carry him differently then I carried my girls, trying to keep the pressure on his hips and not under his butt (so that he is encouraged to lengthen his body and not curl up). I try to make every moment and every interaction with him an attempt to instruct him, strengthen him, and encourage him.

 I push my son. I push him more than my girls were ever pushed, I stand for hours in the toy aisle analyzing which toys encourage suplination in his forearms. (Any suggestions?)  I sing ridiculously loud lullabyes over the sound of the EEG monitor being glued to his scalp and his screams. I spend hours at therapy making crazy sounds and faces and popping his binky in trying to keep him from screaming the entire session. (Again, any suggestions?) And in those session in which he just isn't having it and I would have whisked my girls up in my arm and walked away, I fight the urge and push him through it. Why? Because he needs to be pushed and my emotional need to protect him has to be ignored by HIS needs for therapy.

  I live, breathe, eat and sleep his difficulties daily. I watch his progression and jump for joy when a new skill is mastered, but I am constantly aware of the other milestones he should have reached but hasn't.  This is why I am so quick to recognize denial in those around me...I know and see his issues on the most intimate levels, I hold him when he has bad nights full of residual pain, I worry when he sleeps for a full day and doesn't show interest in eating, I watch and hear his frustration when his hands don't perform as he needs them too. I simultaneously beam with pride and cringe with realization when he adapts to using his wrists to move things because he can't open his hands. I spend hours on the phone with my sister adjusting his lab levels and demanding further test because 6 months later his liver and other levels SHOULD be normal, but aren't. (Any suggestions on how long post Encephalitis abnormal labs are  considered acceptable?)

I get that every parent or loved one of a child requiring different needs wants to ignore them, wants to gloss over them, wants to give their child more time, begs that it's just a time thing and not a real issue to be faced head on. But what good does glossing over do for a child who *might* have real issues? None. Just like becoming overly emotional when my son was in the hospital didn't help him it only exhausted me.


Because I am his mom, I don't struggle with denial because I am faced with this one hard truth---Denial has no value other than to make me feel good.

     Denial does not make a problem go away. In fact denying that your child has a problem only makes it a  bigger problem because you neglect to push them and seek out assistance and therapies that can make a HUGE difference when you start early.

   Denial is not the same thing as being optimistic. Optimism is choosing to hope for the favorable outcome. I hope, pray and believe that Nolen will be well, but I am very realistic about where we are, and less than comfortable with the fact that he might not be "normal". Ryan said it best, "Nolen just wants to be loved, and regardless of what happens, I am more than happy to love him"


So,  help me out here (since I did just let you read my diary)...how do you balance Denial with Reality? Worry with Optimism? Do you think you can be Optimistically realistic? Am I in denial about being a Pessimist?

Nolen's Physical Therapy Eval

I had an obscene amount of anxiety regarding this appointment. The kind of anxiety where you can feel your heart beat faster and your chest tighten...the kind that you are sure would be bad for you if you felt it all the time. I couldn't and still can't pinpoint why I was so anxious. Maybe it was leftover worry from a very disappointing GI appointment, but whatever it was it wasn't fun.

The Physical Therapist, named Adrienne which only keeps with our running TV/Movie themed names/jokes  (remember Al who we already see once a week) and had me remembering a friend from an old base while also reciting a thousand and one Yo Adrienne jokes in my head, agrees that we definitely need more therapy for the little guy. I don't know why, but my heart deflated just a little bit when I was told this. I KNEW in my head that this was what I was going to hear, but I hoped with my heart that I was just too close to Nolen to see the progress that he has made. My heart was wrong, my head was right...he isn't progressing like "they" (and I) think he should. Right now he has a giant piece of tape on his back testing for allergies. If he isn't allergic, next week we will start taping his torso so that his muscles will "remember" how to function and grow stronger. In addition to having his torso taped, his hands will be taped open. Sounds Cruel? Barbaric? Mideval? Yea, I'm right there with you. But at this point...it's tape or end up in braces that aren't nearly as flexible. Hopfully, we can avoid the braces (because if the tape doesn't make a difference, then we are goign to be adding Occupational Therapy and braces to our litany of things to do).

Things they mentioned to me:

~Nolen is still weak on the left side (his head tilts that way, as though he has torticallis (a tight muscle that      impairs rotation of the neck) but his is related to muscle weakness.
~His hands are too tightly closed
~His torso is weak
~His tone is still very poor

Things that we are doing:

~Adding more exercises (yes, more!!)
~Continuing therapy with them and with Early Intervention
~Taping

Al the Therapist?

I am so very happy to report that I recieved a phone call today (I get to check calling THEM off my to-do list) regarding Nolen's Physical Therapy. It starts next Thursday at 1230 and will continue until it's no longer needed! And, get this, our therapist's name is Al. Yep, all I keep imagining in my little head is this guy

In the floor with my son...makes me smile...because I'm wierd like that!

Adios NG Tube!

Nolen is gaining the bare minimum for each day (25 g or kg...which is a big difference I know, I just can't remember which and I sincerely suspect it's kg, but I'm so not sure). This is HUGE! We can take the tube out and stop the weight pre-and post feeding. I won't say the tube won't have to go back in, but I will say that for now, my sanity is just a bit more secure since I am no longer have to reinsert the tube on a near regular basis. Each week we will be doing weight checks at the med group to make sure he keeps his weight up!

Since Nolen's weight/feeding seems to be improving, we are now going to start focusing on other aspects of his condition. Nolen is still developmentally delayed (very much a newborn in most areas). The only area he appears to be on point with is socially he will engage with you and attempt to make noises (they think that part of his delay in "speech/cooing/laughing/squealing" relates to his lack of tone). With that said, here are the big plans for his care.

-Continue weight checks, but stay OFF the tube!

-See a neurologist. His Ped and the Early intervention team all feel that we should start seeing a neurologist due to the fact that there hasn't been any marked improvement in his physical tone/strength nor a large developmental milestone. We've also noticed a slight difference in the sides (left side versus right side) that would indicate possible issues neurologically. 

-Start weekly physical therapy with Early Intervention through the state. In about three months or sooner, we will reevaluate Nolen's condition and start Speech as well as Developmental Therapy. If needed we may also start Occupational Therapy. Our goals for physical therapy is to see Nolen moving or making an effort to move and for speech we hope to have him babbling.

We haven't classified Nolen as anything, or pushed for him to get into the programs offered by the military (EFMP or ECHO) to get him access to more intensive care per the advice of our Pediatrician. She cautions that once an EFMP is started it's hard to "undo" and that would be a quasi permanent label for what we foresee to be a temporary condition. She also says that Tricare should cover due to the lack of a diagnosis...so it looks like more fighting with insurance lies ahead for me!

I'm so excited and I just can't hide it!

*I realize some of you are reading just to check up on Nolen, so I will seperate my blog by headings so that you can skip to Nolen's updates if you like!*
 
The girls are going to be here, at my house around 3pm tomorrow! As crazy as it sounds, I am just so pumped to have all of my family, once again under the same roof! I feel like we've spent far to much time spread across the globe/map for my liking.

I am a bit nervous about the added work load of two little people who will be needing my attention. Not to mention that we will be kick starting our Home school year.

Homeschool
I've decided to go with Horizon's Math and I think we are going to try our hand at Explode the Code for phonics/early reading. It's cheap enough that if I don't see Kaelyn liking or responding well to the system that I won't sweat the investment and can try a different program. I had originally hoped to do Calvert School, but after talking it over with Ryan I don't really NEED all the assistance (but I really WANTED to be lazy and let someone else do all the work for me) that Calvert offers but just needed help in planning Math and teaching Reading. Also, Calvert school is a larger financial investment when I'm still not sure how Kaelyn would respond to it.

Our plans for the first week are to work out our daily schedule (I have a rough idea of what it should look like, but now that I'm adding in Nolen's extra care, therapy, and doctors appointments I'm going to have to adjust accordingly) and to establish a Morning routine of Calander time.

Our Calander Time:
-Say the Pledge


-Work on the Weather/Season: (weather for Anna, Season's for Kaelyn)
-Sing the Days of the Week song (for Anna, but also to help Kaelyn be able to tell me what today is, tomorrow will be, and yesterday was)
-Sing the Month's of the Year song (complete with a dance :) because that's just how you should start your day, by dancing!)
-Work on our monthly binder where Kaelyn traces the number of the day and colors the pattern.
For example, Today is September the 25. Kaelyn would trace the number 25, and color the square on her calander pink because our pattern is White-Pink-White-Pink. I'm also considering having her count up to the date (so 1-25) to help reinforce her concept of numbers.

Normally, at breakfast I tell the girls what we have planned for the day as well as read a poem/story from our children's Bible. I am considering making a weekly calander so that Kaelyn can SEE what we have to do that day and the rest of the week. In addition to that, I would also like to make a daily schedule with times (Breakfast, School, Lunch, Nap, Dinner, Bedtime), so that she can start telling me what's next by using the clock and the schedule together.

Nolen

We had our first meeting with Early Intervention    on Thursday of this week and Nolen qualifies. That's both a praise and a bit alarming. To qualify your child must be delayed by 25% in two or more areas or 33% in one. Nolen was evaluated at Newborn or less in most areas. I think we expected it to some extent, but it was still hard to hear from someone else's mouth that your once "on track/slightly advanced 6 weeker" has regressed to being "severely delayed". I also think it was a little bit harder for me because our Pediatrician had commented how it was very difficult for babies so young to get into the program unless it was extremely severe due to the variation in what is "normal" for this age. She had cautioned me that she thought Nolen needed some therapy but NOT to expect the state to let him in until he was older. It's a praise because we have heard amazing things about this program and the therapist in it! I'm very excited to start therapy and learn new techniques to help Nolen get back his strength quickly.

   We meet with our team to start setting goals for Nolen on the 5th of October and then we will start having therapy sessions regularly after that initial meeting. In the mean time, they have given us a few tips of things to do with Nolen. The first is to encourage as much movement as possible by playing music/talking to him/moving his arms and legs/bathtime/etc. In addition to that, they also suggested using one of the gel packs (yes, like the kind you put in your lunch) underneath his head to help him be able to keep looking forward while laid on his back. That will help his head go back to a normal shape as well as encourage those muscles to strengthen. They are concerned about his hearing since he doesn't react to noises well, but there isn't much we can do for that other than wait.

 Our pediatrician has also advised us to keep both the therapist through the state Early intervention program as well as the therapist through our insurance. (I won't lie, I was secretly hoping she would say, "Oh, you qualified for the state program that will come into your house and make your life much easier than having to drive all over NJ for therapy appointments with three small children, don't worry about the insurance approved therapy!". But she didn't.) So, this next week is going to be a busy one for Nolen, he has his first appointment with Speech Therapy through CHOPS and we start the process of getting him into physical therapy through CHOPS. CHOPS aka Children's Hospital of Philadelphia generally has a 2 year waiting list, but because we went through their hospital Nolen has somehow magically bypassed that waiting list and gotten in for Speech. I'm not sure yet if he will be able to get in with physical therapy, but the referral is already written and should I encounter a long wait list, I will happily find another suitable physical therapy company to work with! He will also be meeting with his feeding team, a GI Doctor and a couple of other additional individuals on Thursday.