5 Things I'm Thankful For

We set aside one day a year to reflect on all the blessings that have been bestowed on us, the things we are thankful for, and to subject a family member or friend's home to mass chaos (hosting can be a joy and a major stressor). I don't often like to participate in all the "thankful" postings on social media (they sometimes seem a tad repetitive), but I do have a few things on my list...

A very small fraction of our family.

1. I'm thankful for my family and friends (an obvious choice). They have stood beside me through all my emotional breakdowns, irrational logic, and bi-monthly (*cough-cough*...bi-weekly) pity parties (no one likes being invited to those). They have celebrated all those little inchstones with the same exuberant joy one would express at winning the lottery (maybe not that much, but it's close).  They have helped me over so many bumps, hurdles, and pitfalls to numerous to list. Most importantly, they haven't made me feel like I'm not doing enough for Rae, they don't think I'm crazy (maybe just a little) when I suspect something else may be wrong, they've willingly been my shields when strangers prod, they remind me that I also need "me time," and they love, Love, LOVE our daughter for who she is and not who she isn't.

Rae and Karen, her Occupational Therapist,
during her session this week.

2. I'm thankful for all the doctors, nurses, lab techs, therapist, case workers, insurance reps (especially Ms. Timmons at BCBS...she called me almost every day to keep me posted about the status of a particular concern), and everyone in between who have helped us maneuver through this Hypotonic maze, offered us hope & encouragement,  and (on numerous occasions) graciously taken the extra 10 minutes (okay...20 minutes...running over into someone else's appointment...sorry) patiently going over information they've already explained two or three times before and listening to me go on and on about our long list of concerns. They never once made me feel like I was wasting their time!

3. I'm thankful for my health (another obvious choice). I'm not in the best shape physically, but I am healthy enough to care for Rae (for now...knock on wood). I had a pretty big health scare this summer and ended up having my thyroid removed it was two and a half times average size, was starting to choke me, and stretched my vocal chords to the point they were about to break (my vocal chords are still not fully healed). Thankfully, it was not cancerous. While at times I feel the strain/pain (physically), I'm still able to get up and down from the floor after playtime or therapy, I'm able to lift her in and out of her crib or the tub, and I can carry her (this is becoming more difficult and my back is starting to file complaints). Under normal circumstances, I'd probably blow off my own health issues (and I still do from time to time), but I have to take it more seriously now. Rae needs me and I need to be here for her.

Rae with Anna, her physical therapist,
during this weeks session.

4. I'm thankful for my online support group (Hypotonia Parents Connection on Facebook). You ladies (and men) are awesome! You just "get it." You don't judge anyone when they get angry and vert or share worries and fears. You offer such wonderful assistance when researching testing/therapy/toy options. You laugh, rejoice, and cry with each member. It's bittersweet that the number of members keeps rising. I'm thankful for each of you...you help me stay sane!

5. I'm thankful for the inchstones. Those tiny developmental drops of rain that sustain us through the periods of draught. Two weeks ago, I was in despair. We hadn't seen much progress for weeks and I was at a loss. Nothing seemed to work and everything seemed to be off the rails again. It's not a good place to visit, let alone feel like you've been stranded there. Fast forward to this week and it was like a fog had been lifted! We have some big (positive) changes and my cup was once again overflowing with joy.

I could continue to list all the things I'm thankful for (my growing faith in God, the roof over our heads and food in our pantry, etc...), but that would be a never ending list. This is my short list. The ones I remind myself of almost every day.

Four Month Wrap Up

During the last four months it has been one emotional upheaval after another. I feel like I am constantly reminding myself that everyone has something going on in their lives that stresses them out, makes them an emotional mess, or creates havoc. Then I tell myself that even though there is someone out there that may have it worse that does not diminish what I am going through. That is not an easy pill to swallow. I so desperately want to be positive about the wonderful aspects of our life that I try to find ways to make our struggles and heartache seem trivial.

I feel like I am always making excuses when I forget someone's birthday/anniversary, when I don't return a phone call, when a project goes unfinished or takes longer to complete, when I forget to schedule a coffee break with a friend, or when I just seem to drop off the radar, but... Here's some of what has happened in the last four months:

One of Rae's last pics with Papa.

• In mid January, my Grandfather went into the hospital with a brain bleed. They operated, he never woke up, I was able to say goodbye, but I knew in my heart he had already left us. He passed away the day before my Brother's birthday. I no longer had a Grandfather. He was always right, strong, generous, stubborn and a teddy bear, but not everyone saw that side of him. We were in Indiana for almost three weeks and arrived home just in time for...

• Rae's first appointment with Genetics (read the post here) in the beginning of February. I met Dr. M and after an extensive examination with a detailed Q&A session more tests were ordered and we waited...we wait alot. I left the appointment feeling apprehensive and guilty (what if I did this to my daughter?). I also left with a bad taste in my mouth and concerns about the curt demeanor of our newest doctor. But, I had other things to occupy my thoughts with like...

• Her follow-up with Dr. S in Orthopedics at the end of February. When we learned that Rae's scoliosis was getting worse it went from 20 degrees to 28 degrees (read the post here). The prescribed plan of action..."wait and see."

• Two weeks later (on a Thursday), I found myself going to see Dr. A (our pediatrician) about the tremors (Part 1) Rae was having at the end of her naps. Prior to the appointment, I managed to catch the tremors on video so he could see exactly what we were talking about and then found myself trapped in a whirlwind of testing (Part 2) and another appointment with Dr. H's ARNP, Ms. C, in Neurology (Part 3) the very next day to be told that Rae was epileptic. The first medication (Keppra) made her temperament unbearable (she became such an angry baby I about lost my mind) and she was still having the seizures. Dr. H moved her to Trileptal and we are still trying to determine the correct dosage (we're up to 4ml twice a day) hoping to halt the seizure activity (which we are still seeing, but less often and not as bad as before). Which reminds me that I need to place a call to Neurology today...

Rae and Gruncle

• In between all of this, my Great Uncle (Gruncle) was in and out of the hospital (cancer and infections) and we were all wondering what was going to to happen and when we should make a trip to Atlanta to see him. That question was answered when my Mom called and said my Dad was planning on leaving the Friday before Easter and returning the next day. There was no question about whether or not I was going. I packed our bags (mine and Rae's) and we went on a quick road trip (6 hours one way) to say goodbye. Being at my Gruncle's bedside was a very different experience for me because, unlike my Grandfather, my Gruncle was awake (he came in and out). He opened his blue eyes and looked into ours with a deep sadness and pain. It broke my heart and I wept for days. I wanted to erase his pain, make him better, do everything I could to help my family through this...I wasn't ready to loose him and neither were they. He passed the day after Easter. We just barely made it in time to say farewell. He would have been 72 this past Wednesday.

Trying on a sample pair of frames.

• The same week our Gruncle passed we had a follow-up with Ophthalmology where Dr. D told me we needed to consider getting glasses for Rae. While this may not seem like a big deal to some I felt like I just got punched in the throat. Yes, I cried a little. Glasses would make her differences obvious. It would make Rae stand out and up until this point her delays were just suspicions people might have, but the glasses would scream out to people that she was different. I know people celebrate their child's difference, but I wasn't ready to do that just yet. I'm getting there. We ordered them and hope to work at getting her to keep them on (and not eat them) sometime next week. They are lavender Miraflex frames (w/o insurance would have cost $350) and I hope it pays off in the long run. Her being able to see properly could help her progress in her development.

• At the end of April, we had our follow-up with Dr. M in Genetics. For three days leading up to the appointment and the day of the appointment I had a nagging migraine that would not quit. My nervousness could no longer be swept under my mental rug and it was manifesting itself in the form of a 24 hour headache that nothing could kill. Much to my surprise things went smoothly. Every test came back normal and we were told Rae has Congenital Myopathy. Her muscles just don't work properly. We can do more testing to try and determine the specific type, but it may or may not be covered my our insurance. After the appointment my headache was gone and hasn't returned since.

• Next hurdle...Rae got sick. Something viral, but we initially believed it to be bacterial and she was placed on amoxicillin (a little scary since it was her first time and we have a family history of penicillin allergies) and we had two weeks to get it cleared up before her physical (May 3rd) for her MRI on May 9th. Yesterday, Rae received a clean bill of health at the physical and now we have to keep her in a bubble until next Wednesday. But this wasn't the only news we received yesterday...

• I made an impromptu appointment with Mr. L at my primary care office (same location as Rae's so it was convenient...I was already there) to check a problem with my throat. I was worried it could be an infection and I didn't want to risk passing it to Rae (I was actually more worried it would be something more serious and didn't want to know). I noticed my throat was a little sore this past Monday and thought it was just sinus issues from pollen and whatnot. By Monday evening I could feel a lump...no biggie it's just swollen. On Tuesday it was visible...well that can't be good. Wednesday showed no change and I was trying to just blow it off (denial). I don't have time to be sick and we don't have the money for me to run to the doctor(s)...especially if is serious. My Mom threatened to make the appointment for me (gotta love Mom's) so I checked if there were any openings on Thursday...lucky me they had an opening at 11. I only had to wait around for 40 minutes. I waited. Turns out I have some kind of goiter on my thyroid. If it is soft, then it is fluid and they can drain it easily enough (it involves a needle...ick!). If it is hard...well...(gulp)...it could/is cancerous. WTH?!?!?! What part of I DON'T have TIME for this #*@% don't YOU get?!?! Yeah, God I'm talking to You! We are in the first week of May and I feel like my family has already been on one giant, freaking, crazy, emotional, mind screw and You wanna toss this into the mix? Sure, I know He didn't do this, but I feel I have the right to be a little peeved...let's be honest we all yell at Him (or whoever you believe in) at some point. So, I had more blood work done and went for an ultrasound this morning, but we have to wait until Monday for results...

So, we now find ourselves at the beginning of the fifth month of 2012 and I already feel like my emotional savings account has been emptied and I'm running on a combination of fumes and credit. Some days I don't know how much more we can handle, but I know no matter what we will get through this somehow...

The Quilt I Wear

Every morning, after I throw my blankets off and crawl out of bed, I pick up a quilt at the foot of my bed, wrap it around my shoulders, and weigh myself down day after day. After a year of dragging this quilt around every where I go, it is starting to look a little worn and a few places have become threadbare. The weight makes me feel exhausted (mentally, physically, emotionally, & spiritually). It's not the prettiest quilt, by anyone's definition, but it is mine and I just can't seem to leave it at the foot of my bed where it belongs.

It's my Guilt Quilt.

My quilt is made up of everything I feel insecure about and all the things I feel I don't do well enough. Every square is another piece of my guilty conscience (justifiable or not).

Top 24 Guilt Quilt Squares

1. I don't spend enough time doing therapy with Rae, I don't make her work as much as she should, and I cave in to her will on a regular basis. 
2. I'm not being as proactive as I should in finding help/assistance for Rae.
3. I don't keep my home clean enough. (UGH...chores!!!)
4. I don't keep my yard trimmed/cut. (Double UGH...more chores!!!)
5. I don't bake/cook as often as I think I should.
6. I don't get the laundry done. (if I do manage to wash everything it will lay on my dining room table for a few days before I put it all away).
7. My husband and I don't spend enough time together without all the distractions of life (Rae, emotions, "stuff") getting in the way. (this is a doozie and often leaves me feeling lonely)
8. I can't really return "favors" or do things for the people I care for & love.
9. I don't call my family/friends often enough to see how they are doing.
10. I don't do anything with my photography website or photography in general.
11. I don't make all of Rae's food. (seriously I'm doing the best I can)
12. We don't get enough sleep...I constantly toss and turn (the sand man needs to give me a double dose!) and my husband snores so I'm always shaking him to make it stop.
13. I'm angry, sad, resentful, mean, depressed, exhausted, selfish, crazed, mad, nit-picky, lazy, undisciplined...okay this list can go on forever.
14. I'm not as neighborly as I want to be or think I should be.
15. I don't exercise and I don't eat well. (Oooo....Taco Bell Thursday!)
16. I did this to my daughter because it is likely a genetic thing and that comes from us.
17. She doesn't walk, crawl, or roll over because I don't work with her enough.
18. She doesn't talk/sign/communicate because I don't work with her enough.
19. I should have caught the seizures sooner. (Why oh WHY didn't I see it sooner???)
20. I should have noticed there was a problem sooner than five months. (Yes, I was a new mom, but I should have known!)
21. I get frustrated with Rae. (every parents struggle)
22. I have to make decisions about who gets medical treatment based on finances...I really need to have my knee x-rayed, but I can wait because we have to have another MRI that has to be done for Rae and it's more important. (yes, I know that I need to take care of myself so I can take care of her and I promise I'll get to it...eventually)
23. I really shouldn't yell so much when I'm upset...at least I don't hit.
24. I never finish ANYTHING! I have so many little projects just sitting in piles that I could open my own craft store. (okay maybe I'm exaggerating a little, but I really need to finish something)

Now that I've talked about the guilt that has been sewn together to make one giant, heavy, burden that I carry around all day, I'm going to share the beautiful aspects of my quilt and the lessons it has been teaching me. These quilt squares are the things I believe I'm doing right. (the list probably isn't as long as my guilt list)

Top 10 Positive Quilt Squares

1. I love, Love, LOVE my daughter!!! She is my joy, my passion, and my purpose.
2. I try to show my husband that he is as important as Rae and that I love him too (I don't always succeed, but I try). It's easy to lose sight of the people around you when you're struggling with something or to take the frustration out on them.
3. I keep all of Rae's medical "stuff" in a fairly well organized binder (it's the only organized thing in my house). This one little show of organization makes bills, receipts (very important), appointments, insurance info, doctor contact info, and programs easier to find when I need them and offers me some peace.
4. I research what I believe may help Rae, her doctors, or us in helping her make further progress or figure out what is causing the problem. I have learned to limit this research by declaring computer free/doctor free days. This allows me to focus on the ever growing list of things I haven't gotten around to doing. I feel a greater sense of accomplishment knowing I finished something...even if it was simply dusting the living room, mowing the grass, or just playing with Rae.
5. I am learning to ask for help (that is never easy for the person who is used to being the helper). When it comes to something I need for Rae I am going to pull every string and ask for any assistance we may qualify for (which isn't much right now). I will have no shame when it concerns our daughter's needs.
6. I am making time for myself, for "us," for Rae, and for our friends/family that isn't centered around our current distressing situation (if you haven't started doing this I highly recommend it). Rae spends at least one night a week with her Mimi and G-Boss. This gives us a much needed break and allows us to enjoy a night to ourselves. Thank God for Grandparents!
7. Even though I think I'm not being proactive enough...I am being proactive. I don't have to sit at the computer all day or tie myself to the phone in order to get anywhere. I am trying to keep it simple and focus on one task at a time.
8. I allow myself to feel the emotions that present themselves. I don't wallow in them. I acknowledge they are there and then I work to move forward. Yes, some will circle back around, but I'll deal with them when they get here.
9. Some days are better then others and I'm learning to seek out the good things, not the bad.
10. Even though it is frustrating to no end, I have NO control over this situation and I realize that I have NO control. We will have to roll with the punches and have faith. (thanks for all the encouragement Maria, you are one of many prayer warriors that keeps me grounded)

It's always been easier to see the bad things in life, the things we do wrong, and the shortcomings we see in ourselves that other probably don't see. They hold us back and keep us from becoming the people we want to be. I challenge everyone that reads this to make an effort to find the positive things, no matter what the struggle is, seek out the things you are doing right. You'll be surprised what you find out about yourself. I always knew I was strong and in my weakest moments, when I feel like I can't take anymore, strength to rise up and push forward always seems to find me.

"Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ's sake. For when I am weak, then I am strong." 2 Cor. 12:10

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." 

The Ostrich Egg

If your a fan of cooking shows like Top Chef or Iron Chef then you've probably seen an Ostrich egg make an appearance from time to time. This egg is the Grandaddy of all eggs. It is HUGE! The average Ostrich egg is almost 6 inches long, 5 inches wide, and weighs in around 3 pounds! The chefs on these shows usually attack this culinary delight with gusto and a hacksaw. No cracking this baby on the top of your counter.  In order to get to that golden goodness locked inside they have to saw their way through the protective shell. So, at this point you're probably asking what this has to do with being a parent of a child with Special Needs...

I need this to develop a a secure, hard, difficult to crack shell around myself. Not to keep people away, but to keep some of the things they say from penetrating my defenses and puncturing the core of my emotions. When everything first started developing (or not depending on how you look at it) with Rae's condition I was so vulnerable to everyone's seemingly harmless words and phrases. I didn't want to be around some people because inside I knew they'd open their mouth and eat their own foot with gusto. Not even realizing that they did it...you'd think they'd their own taste toe jam, but apparently it has no flavor.

Initially things like, "What's wrong with her?" would illicit an emotional eruption inside that would rival Mt. St. Helens and I was almost ready to burn the friendship bridge. Fortunately, over the last few months I've gotten better at controlling those initial responses, but every once in awhile someone still manages to find the chink in my armor. Phrases like: "She'll grow out of it," stated very matter of factly like they are some medical expert when it comes to Hypotonia sends shock waves throughout my body. I manage to choke back any retort that comes to mind, which is usually a very snide sounding, "No, she won't because it doesn't work that way and thank you for reminding me of that little fact." My other personal favorite: "You're lucky she stays where you put her. I have a hard time keeping up with Baby Doe." That one still gets past my guard because what I dream about more than anything in the world is having to chase our daughter around the house. I long for the days that I can't "keep up with her." They can't arrive fast enough.From time to time we also hear the excited exclamations, "Oh, she's getting so big. I bet she'll be walking soon and you'll be chasing her down!" To which my mind screams, "No she won't. We're hoping that maybe she'll walk by two." That one always manages to hit my heart and leaves a burning sensation that lingers for a few minutes.

By working on my Ostrich shell, so much better than chinky armor, I've been able to start nodding in silence with a slight smile and letting them speak their piece. Most people that are aware of Rae's condition don't fully understand it and aren't really sure what to say. So, they generally say whatever makes them feel better not realizing that it sometimes hurts me. Others who are aware seem hesitant to ask questions, probably out of a fear that they'll upset me, so they say generic things that by default sting a little as well. In an effort to not make the situation any more uncomfortable for either party, I have diligently constructed my shell (still working out some of the kinks) and smile without any real comment. Is it honest? No, not really. Is it fair? Nope, life never is. Is it a livable compromise? Yes, but it requires work.

You have to be willing to understand and accept that they don't mean to hurt you and are truly wishing the best. They say what makes them feel comfortable and what they hope makes you feel supported. It is awkward for everyone and a snide or negative retort on my part will only make that worse.

I'm going to leave this with a bit of advice for those out there who have friends or family with Special Needs children.

1. Don't be afraid to ask questions. Sometimes having a better understanding of the need will make your relationship stronger and enable you to support those people more effectively.
2. Listen. For the love of everything you hold dear...LISTEN! If you ask a question be willing to hear the offered answer. On occasion, when trying to explain Rae's Hypotonia, "She'll grow out of it," comes flying out of someone's mouth and I know that it is a futile effort to say anymore at that point.

So, here's to the Ostrich Egg and the new sense of security I feel in having it's protective shell encasing my vulnerability.

The People Holding You Up

More than often I get lost in my own little world. I have insulated parts of my life from the rest of the world and not in an effort to protect my daughter, but to protect myself. At times I am very fragile and vulnerable. Kid gloves are recommended from time to time depending on new "developments" (not the kind I celebrate by jumping and down for) in Rae's condition. I close off from the rest of the world, bury myself in research, cry a few times if the need arises, and try to figure out which course of action is the best. It is a cycle many are familiar with and at times leads to a deeper sense of feeling alone.

Then one day my best friend was playing with Rae and stated that she has been worried that Rae wasn't connecting with her and that she too was trying to figure out how to maneuver through this Hypotonic world that we all find ourselves living in. Her statements hit me like a MAC truck. I never thought about how she was coping with her relationship with Rae and how that made her feel. It was an eye opener.

More often than not, I see my world through a tunnel with one primary goal in mind, helping Rae's development progress and finding out what is causing the Hypotonia. This tunnel vision helps me keep my eye on the "prize;" unfortunately, it also obstructs my peripheral vision and I forget that there are others on this journey. Our friends and family are walking with us and are also struggling to cope with the change in expectations we all have for Rae.

I am so grateful for all they do for us... They offer me comfort when hopelessness envelops me. They bring a sense of humor to every situation that merits a giggle. They celebrate the little victories and act like fools with squeals of, "Yea, Rae you rolled over/waved/held your cup!" They are constantly seeking answers and try to find the silver linings within the storm clouds. They listen to me when I fret, which happens a lot, and hug me when I cry, which is often. They offer me words of encouragement and lead me to new resources for help. I would be completely lost without them!

My new challenge now is to remember that they are also taking steps into unfamiliar, and at times terrifying, territory. While we all muddle through this quagmire I am making a commitment to my friends and family to do my best to remember I am not alone and they too might be struggling with Rae's Hypotonia. It is all too easy to get tunnel vision and forget the ones standing beside you...holding you up.

Good Intentions

As any parent will tell you the minute you have that "gut feeling" friends and family with good intentions come out of nowhere. They offer you advice, support, theories, best guesses, sympathy, and hopefully appropriate humor to help lighten your worries. Every once in awhile those good intentions are totally wrong. After my husband and I decided to postpone the MRI and give Rae a chance to "catch up," I was met with some harsh criticism from a friend with good (as they viewed it) intentions.

My friend is a member of the medical community, in the land of therapy, and naturally I turned to my friend for some support and maybe a little instruction on what we could be doing, therapy wise, to assist in Rae's gross motor skill development. While sitting at their home I shed tears of frustration over how the simplest task will be more difficult for our daughter. My friend showed me a few exercises we could do that would help strengthen her core and get her "rolling" in the right direction. Unfortunately, by going to there for assistance I was eventually offered some strong, abrasive, and hurtful opinions.

After Rae's initial visit with Dr. H. I updated my friend on our decision to hold off on the MRI and the doctors diagnosis of Hypotonia. My friend was appalled and couldn't understand why we would postpone the MRI which could help us learn, "what was wrong with Rae!" My friend railed against our decision for well over five minutes throwing out statements like, "maybe she could be given steroids;" "putting her under isn't a big deal they (the hospital) do it everyday;" and implying we weren't making good parenting decisions because it wasn't what they would do. The tone of voice was accusatory, abrasive, and critical of our decision as Rae's parents.

So, now let's discuss the "good intentions" and how they quickly took a turn for the worst kind of intentions.

First, no parent likes to hear the phrase, "What's wrong with him/her?" I hear this and have to stomp down the urge to bare my teeth and attack. Yes, I am new to motherhood. Yes, I am also new to the emotional roller coaster created by having to adjust my definition of what "normal" development means for Rae. Yes, this giant ocean of special needs is intimidating in comparison to my previous life in a tiny "normal" pond. Yes, this makes me more apt to be defensive quicker than some. But ask yourself, if it was you, how would the implication that something is "wrong" with your child make you feel?

Instead of asking a parent "what's wrong," maybe ask them how their child is doing. This offers them the choice of sharing or not sharing something that they may be struggling to come to terms with themselves. Keep in mind that every child develops at different rates. Yes, there are guidelines, but the span of time for a particular skill can be very broad i.e. rolling over should happen between 4 months and the end of 7 months (according to the American Academy of Pediatrics). Since Rae was only five months at the time of her initial visit with the Neurologist we were still within the acceptable/average range of development. Give it time, we don't regret offering her that opportunity.

Second, any time anyone undergoes anesthesia there are risks and side effects. Yes, some of them are  rare, but they still warrant consideration. Since Rae is an infant and unable to lay still for long periods of time she would have to be under anesthesia at a minimum of 45 minutes, depending on the MRI orders. Given the nature of her diagnosis (Hypotonia) the muscles that help control/regulate her breathing may become too relaxed. This creates a new complication and may result in the use of a breathing tube being inserted to regulate her breathing. As her parents, we had to take all of this in consideration and decided to give her a chance to reach her milestones without putting her through what we hoped would be an unnecessary procedures. A quick word of advice, try not to belittle any medical procedure that someone may have to undergo or consider. Any number of things can go wrong and while the benefits may out weigh the associated risks it can still be intimidating to envision your child with tubes and needles attached to their tiny arms or legs.

Thirdly, I have no problem with someone disagreeing with the decisions we make as parents. Everyone parents differently and the choices made by some of my friends/family wouldn't be the ones I would make for my child, but that doesn't, at ANY point, give me the right to bully them. I'm sure there are times some would say I have overstepped my boundaries, it happens, but I try my best to keep some opinions to myself or at least broach the subject in a manner that wouldn't set them immediately on the defensive. Our doctors supported our decision and if they gave us any inkling that the MRI needed be done sooner then we would have followed their professional opinion.

Sometimes it isn't the argument that creates a hostile friendship, it is how the argument is presented. Being bullied over the phone because we made a choice that differed from what my friend believed we should have done has caused irreparable damage to our friendship. I don't feel comfortable sharing intimate details about Rae's condition or our decisions about what course of action is in her best interest. As much as I would like to open up to my friend, especially since Rae has started physical therapy, I just don't trust that another attack won't be launched. I especially don't need to be patted on my head for finally making the "right" decision.

Below are some links about the use of anesthesia for infants undergoing MRI's or surgery:

Live Stong: Side Effects of Anesthesia - More of a layman's approach.
Sedation and Anesthesia Protocol - This one is riddled with medical terminology.
The Society for Pediatric Anesthesia - Q&A - Pretty basic Q&A format.

A Gut Feeling

Early Childhood Intervention System

Most of us have heard the phrase, "I have a gut feeling," and usually we follow that feeling or trust that our gut is accurate. I always believed she was developmentally on track and at worst was just a little, teeny, tiny bit slower than other babies her age. Well, my "gut feeling" started kicking in around four months or so, but I thought it was just "New Mommy Neurosis" and I convinced myself that Rae was just growing at her own pace. At her five month check up with Dr. A. he had me look at the developmental wheel (similar to the adjacent image) to help me identify what she was doing. I hated that little wheel! The minute it was in my hand my mind would just blank and I couldn't seem to remember any physical milestones Rae was making. Finally listening to my gut, I told Dr. A. that I had concerns and he said he did too, but not to be alarmed. He referred us to Neurology at Nemours with comforting words about not fretting. I understood that he didn't want me to needlessly worry about the appointment and that he didn't want to say anything about his own suspicions until a specialist had a chance to exam Rae. My logical mind understood and accepted this...my emotional mind had other plans. After our check-up I sat in my car and cried. I raged about how I should have listened to my gut sooner and not dismissed my initial concerns as "New Mommy Neurosis!" I didn't want anything to be wrong with our daughter.

The call from Neurology didn't offer any quick answers for us since we had to wait almost 10 weeks for our initial visit! Well, it was completely out of my control, not that it ever was in my control, and we just had to wait. Due to work constraints my husband wasn't able to make it to her first appointment. So, a dear friend, Jae, went with me to offer support and be a second set of ears. Lord knows I needed them! Personally I feel it is best to have a second set of ears present to hear what your brain attempts to tune out. Jae even took notes! On to the appointment...

The Nurse Practitioner came into the exam room first and ran through the preliminary tests: reflexes, head/neck stability, and the "superman" to see if Rae held out her arms in preparation for a fall (there were more, but I don't recall them all). Once she completed her exam we waited for Dr. H. to come in and offer his assessment after another less extensive exam. He professional opinion...Benign Congenital Hypotonia (layman's terms: Harmless, Present at Birth, Low Muscle Tone).  Which according to Dr. H. and online resources is a diagnosis that is giving when there may not be any real explanation for the cause. Dr. H. also explained that there could be HUNDREDS of causes for Rae's hypotonia and it would require a series of tests (Blood Work, MRI's, CT Scans) to rule OUT the looonnnngggg list of suspects. He also believed it would be something she would outgrow. This information made me hopeful.

Our first step in ruling out possible causes was having blood work done. This was the least invasive in my mind and was the easiest decision. However, it was NOT the easiest to accomplish. I had to hold my helpless daughter in my lap while extended her tiny arm out for a nurse to poke it with a needle. I never heard my baby cry so loudly. It tore at my heart. To make matter worse they had to poke both of her arms! It was such a terrible experience for both of us, but we managed to "stick it" out and after several "I'm sorry's," some tears, and lots of cuddling we were ok again.

The second step, the MRI, was optional at the moment. Since Rae was only 5 and a half months we decided to wait until she was 7 months before making the decision to have an MRI done. We based this decision on what is considered "normal" development and by the END of 7 months Rae should be able to roll over. We really wanted to give her a chance to meet the milestone in her own time and I attempted to help her the best I knew how...by helping her roll over. It wasn't met with much enthusiasm from our little girl. We were also concerned about using anesthesia on her at such a young age...especially if it wasn't necessary. It was the decision my husband and I felt best about at the time and there were some that were very critical of our choice (more on that later).

In the end Rae's blood work came back normal and that offered some additional comfort to us and we continued working with her at home as best as we could. We hoped it would be enough and that by the end of 7 months she would be rolling over with wild & reckless abandon. A Mother can dream right???