Friday, December 16, 2011

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.

Tuesday, December 13, 2011

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...

Thursday, December 8, 2011

My Letter to Santa

Dear Santa,

I know I haven't written to you in many years, but I never truly stopped believing in the magic you bring this time of year. Now that I have a daughter (Rae) of my own, I look forward to helping her leave you cookies and milk on Christmas Eve and waking her up to the gifts you leave under our tree. I have a few simples items on my Christmas list...really the items are for Rae, not me. They may not seem like a lot of fun like the toys you usually bring, but they will help her grow and develop in the coming year (not to mention some of them will also help her during therapy). These are just a few suggestions and I know you can't bring them all, but even one of these items could be a BIG help.

To make it easier, I made a picture list:

A corner chair with table top.
If you know any local Elves that can help make this that would be great!

3 or 4 Sensory brushes.

Foam Alphabet Floor Squares (5/8" thick)

LeapFrog Magnetic Farm Animal Set

Melissa and Doug Puzzles w/large knobs.

Poppin' Pal's

A Peanut Ball (small).

I don't ask for any material things for myself because, while I may "want" a Nook or new handbag, I don't "need" anything. What I am asking (and praying) for is more patience with Rae during therapy and mealtimes, better understanding of her needs, doctors that will tell me the truth even if they know it hurts, insurance companies and medical billing departments that will do everything they can to help lighten our financial obligation of Rae's medical bills,  and continued progress. Oh and if it isn't too much to ask for...I'd really like some answers.


Rae's Mom

P.S. I hope you like Snickerdoodles!

Monday, December 5, 2011

The Reality of Dreams

Have you ever had one of those dreams that just seem so real or even somewhat prophetic? I have them all the time. I dreamed a girlfriend's first child would be a girl and she now has a two year old daughter. I dreamed I was standing in a yellow room in my cousins new home, which she hadn't purchased yet nor told me any details about, and the house they were in the process of buying has a yellow sunroom. One time I even dreamed that another girlfriends husband got another girl pregnant (that one pissed me off when it did happen). The most hurtful dream was an argument with my estranged Aunt who told me the only reason I got pregnant with Rae was to "steal the limelight" from her daughter-in-law's pregnancy, because as we all know pregnancy is a competition. But, I digress...

Now, more often than not, these dreams don't come to fruition, but when they do it can be a little eerie. Sometimes, when I realize whatever I witnessed was just a manifestation of my hearts deepest desire or fear, the dreams are a little sad and frightening. The other night was a beautiful exception since I had the most WONDERFUL dream! When I woke up my subconscious had me convinced this dream would become reality during the course of the day. Unfortunately, I took the dream at face value...forgetting of course it was only a dream. So, here's the subconscious manifestation of my heart's deepest desires...

We were all lounging in our living room, like we do every evening, watching a little TV and I noticed Rae doing some different movements on the floor. I've mentioned before that Rae isn't really a "mover" and every tiny, seemingly insignificant movement can be cause for celebration in our home. So, imagine my surprise when I looked down and saw our daughter on her hands (which she totally hates doing) and knees in a crawling position!!! I was thrilled, elated, jubilant, floating on cloud nine...!! You get the picture. She was doing that little baby rock back and forth, back and forth. Then just like that she was crawling! No rhyme or reason...she was off and moving. It was like she decided today was the day and without any difficulty she became a crawler. Needless to say I was absolutely ecstatic! I contained my joy and silently signaled my husband (I didn't wish to startle her in case she stopped) to look at Rae and see that another milestone had finally been achieved. Then with a sense of relief, confidence and pure happiness I stated, "It's time to baby proof the house."

One of Rae's many trips off her blanket.
It wasn't until that evening, when we were all going to bed, that I finally admitted to myself that what was in my mind was only a dream and I felt like someone just popped my balloon. I know in my head that one day she will crawl and one day I will get to tell my husband that we have to baby proof the house, but I wish my heart would become more rational and get on board with the rest of us. For now, we will just continue to corral Rae back onto her blanket laying on the living room floor knowing that someday our dreams will come true. Now if only I could manage to dream that we won the lottery....

Friday, December 2, 2011

Doing "MORE"

So, part of Rae's therapy includes encouraging her to use sign in order to communicate what she wants instead of screeching at the top of her lungs. While this is something that I truly desire to happen, because honestly who likes having their baby yell at them, I become equally frustrated with the idea of becoming Pavlov.

"Rae...Mmmmm....Mmmmm...More?" as I tap my fingers together.

Sometimes she smiles showing me the remnants of her last bite and other times she sits there, staring at me, and after a few seconds starts to screech. So, I try again...

"Rae...Mmmm...Mmmm...More?" promptly followed with a bite of food in hopes it will reinforce what "more" means.

Occasionally, this is met with a modicum of success and Rae will tap her left hand on her tummy or tray (not always consistent, nor the same gesture). Of course this is immediately reinforced with food and me exclaiming, "Yea! You showed me "more!" You're doing such a good job!" As you can imagine, this repetitive process extends her mealtime and, for example, a simple bowl of oatmeal, which generally takes us about 20 minutes start to finish, can now take in excess of 30 minutes.

Scoop, Sign, "Mmmm...Mmmm...More," Feed, and Repeat

The "more" process can be further complicated with the addition of one more step. Instead of just showing Rae the sign for "more," I intermittently pick her hands up and make the "more" sign for her in hopes that she'll start consistently connecting her hand gesture with "more" food. So, now our mealtime steps go like this:

Scoop. Sign, Make Rae Sign, "Mmmm...Mmmm...More," Feed, and Repeat.

As much as I hate to admit this next part (since it will give people the impression that I am not...da, Da, DA...SUPERMOM!!!), I don't always like going through the "more" process during her mealtimes. Sometimes, I just want to get Rae fed so I can move to the next item on my extensive "to-do" list. I then feel immense guilt over not being Supermom and mentally flog myself for not putting Rae's developmental progress ahead of laundry, dishes, cooking dinner, Rae's physical therapy, or dare I say it...taking a shower!

I know what you may be thinking, "It's only 30 mintues. I don't see the big deal." But what you don't know is that the meals are usually followed by the two of us cuddled up in our La-Z-Boy recliner with a bottle of water or milk and trying to encourage Rae to drink more than 1 or 2 ounces at a time. The Hypotonia has made the transition from breast to bottle much more difficult because her muscles have to work harder to make the sucking motion required. For awhile I was trying to encourage her to drink in her high chair and hold the bottler herself. But, that was too much to ask her to attempt given her developmental delays. Our physical therapist, Anna, suggested I hold her so Rae would only have the physical demand of sucking from the bottle and sorta holding it to her mouth.

It worked!!! 

Before this suggestion I was worried about dehydration, but now she will take a bottle and chew/suck it like there is no tomorrow. She has gotten better at holding it, but still needs my support. So, after a meal we sit for another 15 to 20 minutes. These little routines start adding up, chipping away out our day, and before I know it we are starting the entire process over again. Figuring three meals a day, at least four attempts with a bottle, a snack and at least one nursing session...I estimate I spend about three hours of every day sitting in a chair feeding Rae. As a result, I believe I am entitled to not "Doing MORE" every once in awhile.

Wednesday, November 30, 2011

Wishful Thinking

Today I had to run some errands. Nothing major, but I wanted to get some supplies to make a sensory box for Rae (popcorn and a rubbermaid box). There must have been a crazy high demand for popcorn at Target because the shelf was empty. So, I had to swing by Wal-Mart and while driving from one store to another Rae fell asleep. This has happened before and in an effort to keep her asleep I pad the buggy with a cart cover, blanket, and travel neck pillow. So, in Rae's usual laid back fashion, she "shopped" comfortably with her feet dangling over the edge of our buggy.

Shopping in Style
Well, while meandering through the giant aisles filled with Christmas goodies, I noticed a young woman coming towards us with a little girl about Rae's age (maybe a slight bit older) sitting up in the bottom portion of her buggy. As the distance between us decreased I found myself thinking, "I wish I could sit Rae in my cart like that." Of course this thought is something I keep to myself, but there are occasions I find myself wishing Rae was physically able to do what other "normal" children are able to do. While we passed each other in the aisle I over heard the young woman tell her shopping companion that she, "wished ______ (insert girl's name) would lay in the cart like that."

I shuddered and spoke under my breath, "Be careful what you wish for."

You never know what you will actually get when you wish for something. If that young woman knew about Rae's condition and the struggles that come from it, she may have thought twice about thinking she'd rather her young daughter contently lay in a buggy. But, she didn't and from her perspective she might have thought having a child that was so content to just rest peacefully in a buggy while she shopped would be ideal.  For me it is the exact opposite. When I hear other mothers exclaim how they now have to chase their children around the house or baby proof everything because Baby Jane/John won't stay in one place my heart swells with envy. I long the opportunity to chase Rae around the house, but for now she is content to lay peacefully in one place.

So, no matter what is going on try to careful what you wish for because outward appearances aren't always as ideal as they may seem.


From time to time when my husband and I get into a disagreement (read: argument) I find myself asking him to specify what his expectations are of me. I feel that I am not able to meet expectations when I have no clue what they are. Seems logical...right? Well, his simple reply is always the same, "I don't have any expectations." That's when I call B.S.! We all have expectations. I, foolishly, even have expectations of complete strangers, which are often met with my being disappointed, but that's another story.

Recently, I find myself having to readjust my stance on expectations. I can not have any expectations of our least physically speaking. All those lovely, insightful, books that instruct parents as to the "normal" development of their child is reduced to kindling for my burn barrel in the backyard. Since Rae has been diagnosed with Hypotonia, I have found that any expectations I daydreamed about while pregnant have become just that...dreams.

Rae is now 13 months old and if I can get her to roll over on her own ONCE during the course of a day then I feel like we have accomplished something. My heart melts if she places her tiny hand into mine when she wants to be picked up because that is quite the feat in our home. The simple achievement of drinking an entire 3 ounces from a regular bottle in one sitting is cause for celebration, which I do whole heartedly of course. Every minute, almost undetectable movement can be and often is considered progress in our eyes.

On occasion, I find myself daydreaming about when she'll stand or maybe, dare I hope, take her first step, but those dreams are masked in a fog of mystery because I can't have any preconceived notions of when to expect her to meet those milestones. When Reality body checks me (which it gladly does on a regular basis), I curl up inside myself, silently crying, hoping someone may hold the key or at least offer an answer as to WHY this has happened to our little Engel (No, that isn't spelled incorrectly, it's German). Then I pick myself back up, brush away the fear of the unknown, re-calibrate my thoughts, and move forward.

So, do I still have expectations...absolutely! I expect to have more blood work, more tests, more x-rays, more doctor appointments, more medical bills, more therapy, more smiles, more laughter, and most importantly more PROGRESS! Because even though her milestones are much smaller she is still making roll at a time.

Oh, and I still have those pesky expectations of my husband, even if he claims to have none of his own for me. Round 32...ding, ding!!

Tuesday, September 20, 2011

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.

Wednesday, September 14, 2011

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 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 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???

Monday, September 12, 2011

The Sun Rises

My husband and I tried for over a year to conceive our daughter. It was one struggle after another and my doctor couldn't offer an explanation for why we weren't getting pregnant. I was about at the end of my ability to handle the stress of "trying" and decided to give it about six more months. After those six months, I was going to give up on my dream of having a child of my own. That decision hit me like a Mac truck and was the hardest decision I have ever had to come to. Fortunately, after the decision was made I found out I was finally pregnant with our daughter, who is now 11 months old and is our own little Rae of Sunshine.

August 29, 2010 - 1 month from official due date.
My pregnancy was a cake walk and as my doctor said, "A boring pregnancy is the best kind." The only concern we really had was her size since my family is known for making BIG babies (I was 11 pounds!). After carrying Rae a week past her due date we decided to schedule a C-section. This decision was not lightly made either, but she never dropped, I never dilated, and then add in the worry that she was well over 9 pounds and you have a few good reasons for opting for a C-section. Everything went wonderfully. She arrived with 10 fingers, 10 toes, a head covered in reddish blonde hair, and GIGANTIC cheeks. To everyone's surprise, she was only 8lbs 4ozs. But our Rae had a small storm cloud following behind that I don't think any parent could prepare for. There were no obvious signs that a problem was looming just over the horizon. No test performed would detect it and it would take months before the physical symptoms would manifest themselves. Our daughter has Hypotonia.

It isn't insurmountable, but everyday things that we often take for granted will be difficult for Rae to master. Her physical milestones will be outside of the range of "normal" and as a result my conceptions of "normal" are being redefined on a daily basis. I intend to share the difficulty we had conceiving, my "boring" pregnancy & long awaited birth of Rae, and our journey into the world of Hypotonia (along with other hurdles thrown in our way). Hopefully, the things I write will be helpful to someone else. As I have been told repeatedly, "You are NOT alone."