Thursday, August 30, 2012

The New Villain

We’re now almost finished week 2 of Aerynns hospitalisation. The “one week” has blown out to “at least 3 weeks” now. We’ve had some success with her now starting to tolerate neocate advanced (vanilla) quite well… we had some rocky days to start but now almost back to our cheerful little girl J Yay!! Pear so far has been tolerated for one day, as has (surprise surprise!!!) chicken! Pumpkin however didn’t fair so well and we are re-challenging it next week over subsequent days to see if her reaction is a true intolerance or just Aerynn having an “off” day. We FINALLY got a clean catch urine from her to test for UTI’s. It’s only taken several hours on end on a daily baisis sitting with our little Miss nappyless waiting for an elusive wee… it seems Aerynn wont willingly empty her bladder without a nappy on her butt LOL As funny as that is we ended up having a failed catherterisation and SPA (needle through the belly direct into the bladder) in an attempt to get a sample. We avoided a re-attempt at the catheter and needle by 15 minutes!!! Was a HUGE relief that’s for sure.. and for all that time and effort she has tested negative J

Anyways the biggest news I guess is that we have a new suspect for what is happening inside our little girls body. And it’s not the best suspect out – in fact rather more of a Villain.

When her initial blood and stool samples were tested in Warnambool, so many months ago, we were assured that she was negative to several things, including caeliac disease and cystic fibrosis (http://www.cysticfibrosis.org.au/aboutcf/). This week however Aerynns stool sample has showed that she is not processing fats. In fact her little body is spilling fats into her stools (poohs for those who were wondering). This is most certainly not normal. In fact it’s raised a few very serious concerns when coupled with her other symptoms of failure to thrive, excessive sweating (which is salty so I discover tonight after kissing her while she was sleeping) excessive mucous production and malabsorption issues. Combined she is re-raising super bright, flashing neon signs inviting the words “cystic fibrosis” back to the table.



Even though she had a heel prick test (Guthrie test) at 3 days old and has previously tested negative to CF apparently there are a small percentage of kidlets who are kind of like “sleeper bodies” when it comes to CF. They don’t start to show signs until a little later in their babyhood. It is suspected that Aerynn may be one of these little “sleepers”. TO be spilling fat into the stools is a huge sign for CF. In fact CF is the most common cause for this to happen so I’ve been advised – mind you I was in shock when the gastro specialist came and told me all about this after previously wiping CF from our minds…I remember asking what if it isn’t CF, what are the other options. Apparently there are other rare syndromes that may account for it, but from what I can gather their not that much better than the CF diagnosis. There is a very small chance that she may be spilling fats due to a change in her diet, however as she has not had any increase in fat intake and coupled with her other symptoms we’ve been told to prepare for this diagnosis.



So these last 36 hours have been extremely emotional for me in particular. I really feel we’ve been kicked in the gut. We were looking at a probably diagnosis of RSS which although life changing has no long term health implications to CF which, as most would be aware, has lots of health complications and can be life shortening.

Tomorrow at 9am is our sweat test. This is the diagnostic tool for confirming or ruling out CF. A little metal cup like device will be put on Aerynns arm and for approximately 6 minutes a small current will be passed through it to stimulate her sweat glands. Then we are to have her rugged up nice and warm and try to make her sweat as much as possible for the next 30 minutes. Knowing Aerynn that wont take too much effort LOL We’ve done a sweat test 11 years ago with William, he was obviously negative – but then he also doesn’t have the issues Aerynn has with sweating, malabsorption size etc etc…

To say we’re scared is an understatement. I know we’ve been told to be prepared for a diagnosis before, but this one for some reason has really rocked us. It really didn’t help that the morning of the Gastro specialists visit I woke with the song “Sixty Five Roses” (CF awareness/fundraiser song www.youtube.com/watch?v=Mksi0KI6AiA) in my head and visions of the episode of A Country Practice that featured CF dancing in my dreams… Was my subconscious trying to tell me something Guess time will tell.. but for now it is 2.27am the morning of Aerynns sweat test and sleep is eluding me… my brain is going a gazillion to one and the scenarios playing out aren’t things that should be going through a persons head before they go to sleep… Guess I have to though… have a feeling I’m going to be needing all my strength to get our little one through the day….

Thursday, August 23, 2012

Altered Realities

Today is day 4 at the hospital (admitted around 5pm Monday night) And right now I am feeling as though I must come from another planet or am living in some external plane outside of the real world that allows me to interact with those in the real world still.

So far today I’ve been told that Aerynn has been given antibiotics previously and has a skin rash and been prescribed these drugs again to clear it up. She needs to take antibiotics orally 3 times a day for 2 weeks :/ This girl (well in my world at least) has never had an antibiotic in her entire life!!!! Let alone a rash that has been bad enough to be needing a Dr to be checking it :/

Also in my world last night I was up settling, feeding and soothing her 6 times between the hours of midnight and 7am. This morning I am told that ht nurse who introduced herself at 10pm and whom we didn’t see again reported Aerynn had a great night, was really settled and slept well…

And now despite me watching her react in front of my eyes, having others see her react an come out in hives, vomit, diarrhoea etc etc etc in the real world she tests as not allergic to anything :/ How the heck can she be reacting, hiving, vomiting, mucousing, etc etc etc in my world but in the real world nothing – nada… zip… Even with photos….

So I’m obviously living in some altered reality. Things I’m seeing and reporting are apparently not real or happening according to everyone else.

I want to check out of this place right now.. I’m so confused and upset and really have no idea where to turn now. The person parents should be comfortable in turning to has been extremely judgmental of us already (our choice to demand breastfeed and use cloth nappies) so not feeling the support there.

Add to that being told yesterday that unless Aerynn gets hives, swellings or copious vomiting from foods it’s not really considered a “reaction” I’m kinda flustered with this. I know she is mucousing and spiking temps with food but they are not considered reactions to the food! We’re to continue giving her food despite this happening. Despite the fact she’s not sleeping after being fed these foods for whatever reason :/ I can understand that they are not life threatening reactions and that we can push past them but feel they have been dismissed and waved away as “nothing”

Anyways… beam me up Scotty. I do not like where we are at the moment. I feel questioned, judged and found wanting on so many levels and am starting to question my own sanity. It’s not a good place to be :/

Sunday, August 19, 2012

The journey has begun!!

After a night of tummy cramps, screaming and very little sleep we are on our way - hopefully on our way not only to Melbourne but also to finally getting some answers to what is going on with little miss A!

422kms and approximately 5 hours travel time lies between home and our destination... Lots of coffee and refresher stops along the way are on order ;)

Piccies to come :)

Saturday, August 18, 2012

So Much For That...

...you know, that "no food" rule...  Somewhere the littlest miss has ingested something and has spent the last 2 days reacting to whatever it was **sigh**  I'm not certain what it was but it could be apple if she had a suck on the apple core Dommy left on the coffee table before we removed it... 


So we've had the works..  well kinda, all except vomiting this time, which is what makes me think it's more of a "suck" than a "chew and swallow".  We were aiming on getting her back to base level of no reactions and clear skin before her hospital admission in 2 days (eeeekkk  so close now!!!) but instead we have eczema, burned bottom, diarrhea and mucous and a miserable, non-sleeping, screaming and clingy bubs.  I'm hoping against hope that all these symptoms dry up overnight so we have a good starting level before her food trials start and (quite selfishly) I can get a decent amount of sleep before our 5 hour drive tomorrow.
 


In some unexpected good news Aerynn won a feeding bib from a Facebook store yesterday!! Belly Button Kids  had a 1000 likers giveaway and our number came up!!  Perfect timing isn't it!!  Hopefully we come home from hospital with a little girl who can finally eat and wear her beautiful new bib!!!  


At the moment I'm madly crossing things off lists, making sure that things should run reasonably smoothly back here at home for hubby and the remaining 4 kidlets and getting ready for a rental inspection due on Tuesday... oh and Kahli and William have a school concert I need to get their stuff ready for on Tuesday evening as well :/  Never a dull moment eh   ;)   I'm hoping to be on the road by 10am tomorrow so we hit Melbourne before it gets too dark!  Driving in the city for this country mouse is daunting, driving without support in the city is even more so! LOL  Times like these you realise how much you rely on your partner...  big girl panties and cups of cement have already been ordered   ;)

Right now the older kidlets blue baby books are eluding me, these are required to compare Aerynns growth with for the Russell-Silver Syndrome investigations...  Pretty important I find them too!  So it's madness!!  Nothing new really...  madness mixes with a little panic and apprehension... I've never left my kidlets for this long before, and never left Dommy before so feel a bit like a deserter but know it's for the best.  Bring on discharge with diagnosis and some "safe" foods, oh and returning home to my little (well not so little) family <3

Tuesday, August 14, 2012

Becoming Real

It's starting to feel real.  The hospital admission has been confirmed and plans starting to gel into place. The possibility that we may be walking away with a RSS diagnosis.  The hope that we will have something for Aerynn to eat very very soon. And the fact that mum and bub will be away from the family for an unspecified length of time.

It's all taking a toll on our stress levels and playing on our minds. 

We will cope, the day will come, the time will pass.  But in the meantime I'm kinda scared about what next week will bring. 

We've been told different things from different people who have had similar food trials in hospital.  I'm trying to not stress but knowing how Aerynn has reacted to all food previously I have to admit I am a little concerned.  On a plus with that I will only have her to concentrate on.  I wont have my attention divided between her and the house and a husband and 4 other children and other social appointments etc etc...  But I am a bit nervous about not having Nathan with me.  As much as I grumble and (jokingly) complain about him and the likes he is a great assistant with the kids and if I've been trying to settle Aerynn all night and day I at least know he will make me a coffee and hold her so I can shower or go to the toilet.. I wont have that in the hospital... I don't even know what facilities there are for parents so am feeling a little ill-prepared for what to expect there. 

We still have a few practicalities to work out...  What to pack to start with.  Aerynn can't wear disposable nappies so I need to take her cloth in.  There are washing facilities at the hospital but I don't know how often I will be able to get away from Aerynn to use them :/  So how many cloth nappies and wipes should I take?!?!  Her whole stash???  oh Lordy.. too hard LOL  If she reacts she can go through up to 14 nappies a day!!!  Then clothing.. how much to take, and what kind?  Will we be allowed to wander around and socialise or will it be a strict - in room under observation kind of thing?  Do I only pack her jammies???  And do we go down to Melbourne on Sunday and relax for the night and Monday morning waiting for the call to go in, or drive down Monday morning and grab a coffee at the hospital cafe if we get there early enough and wait there to be called in???

I know, totally trivial, the big thing is that it IS happening!!!  This time next week we will be in hospital hopefully getting answers or closer than we are now at the very least :)

For now, the family is really struggling with the split meal thing and not eating in front of Aerynn.  We have to remind the older children constantly and Miss A sees them eat and we end up with huge tantrums with her demanding the food and then watching her heart break with the realisation that it wont be forthcoming.  Add to that Aerynn is still really clingy.  She has been screaming on and off the last couple of days.  I don't know what is happening inside her to make her continue to be miserable.  It could be a wonder week, it could be a reaction.  I really don't know...  I only hope we get the answers we are so desperate for next week so we can start to fit the puzzle pieces together.

Friday, August 10, 2012

Getting Tough!

Time has come to start getting really tough and crack down on the "no food" rule.  Aerynn has had a really rough night followed by a similar day.  I can only blame myself for giving in and being selfish with the cake smash.  As much as she LOVED having free reign I knew it was a risk and chose to get photos over the health implications which really isn't good enough.  As her mum I'm meant to be her protector and put her first, I didn't and now she is suffering for it :( 

Last night both Aerynn and I had absolutely no proper sleep.  She would drift off only to wake screaming, arching her back and the only way to calm her was to feed her and snuggle.  She has had 9 very pale and loose dirty nappies in a 24 hour period which have been very acidic and she now has big open wounds where she has been burned and the resulting blisters have burst on her bottom.  They are now bleeding, no matter how thickly I slap the barrier balm on it still bleeds through.  Add to that she had a huge nappy full of mucous and fresh blood this afternoon.  I can only put it down to a delayed reaction to the cream she ingested with the cake smash.  She's not ingested enough of anything else to create such a dramatic change and gastrointestinal reaction.  She didn't eat any cake, only cream.  Cream dyed with red food colouring with added gelatine (beef) so it could be any of those or the combination.  Honestly, I think it's the cream.  She's always had an issue with dairy - as much as she's not allergic to it she has had big issues since around 12 weeks of age.  

So her reaction has been tough, but our response must be tougher.  No more food.  We have a week to get her back to baseline so any reaction we get in hospital can be narrowed down to a new reaction and treated accordingly.  It's not going to be easy.  She knows what food is, she loves tastes and textures and is awake during traditional mealtimes.  The only way I can think of making this work is to have 2 meal times for the family.  Maybe the kids first with Nathan and then I'll eat later.  That way whomever may not be eating can take Aerynn into another room and entertain her so she doesn't have food in front of her teasing her as such.  Meal time for us has always been a family situation so it; is going to be different, but hopefully, it will only be for a week.  Hopefully we come home from hospital with a food that can be tolerated and Aerynn can finally join us at the dinner table :)
  

Wednesday, August 8, 2012

Happy Birthday Little Poppet!!!











Yesterday we took a risk and did a cake smash with our little one.










 The logic behind it being that she was already feeling poorly, it couldn't make her feel much worse, and better to get it over with while she is feeling like that already rather than letting her feel better, then get sick again and start a roller-coaster of food reactions.  It sounded good at the time, we had a rough night and iffy morning but it was totally my fault so no use complaining...  I think the photos and seeing her enjoy the cake smash was worth it.  




Who knows when she will have free reign to enjoy food again???  It was one last hurrah :)  





 *****

Today we could ignore it no longer...  At 1.35am Aerynn woke for a feed...  around 1.45 she slowly started to doze off...  Probably doesn't mean much to anyone really but 1.45am marked Aerynn being earthside for 12 full months.  It was so right that she was milk drunk, snuggling and starting to doze at that particular moment. 



 I think it was also the moment I started to come to terms with the fact that as much as there is nothing I wouldn't do to "fix" Aerynn but no matter what we do we simply have to ride the waves of whatever comes out way.  I'm probably a slow learner, I really don't know... but we've tried just about everything we can to induce growth and weight gain.  Even these last few weeks allowing her to eat a bit more and increase calories simply hasn't resulted in anything.  Todays weight  and length check confirmed that. 

At 12 months of age Aerynn is 65cm long, weighs 6.57kilo and has a head circumference of 46cm.  That means in the space of 1 months she has gained 10grams and grown half a centimeter.  But for the sake of not a wetting her nappy and a little scrunch as she's beign measured we would have recorded our first loss!!!  It's the smallest growth she has recorded in 4 weeks AND she has had increased calories this month.  It has calmed my mind a little in allowing me to accept that her lack in growth is extremely unlikely to be nutritionally effected, that we are dealing with something other than a dietry issue.  Sure her diet IS an issue, but it's not what is effecting her growth.

In 12 months Aerynn's weight is up 3.68kg (from 2.89kg), She has grown 17cm in length (from 48cm) and her head circ is up 12.5cm (from 33.5cm. She has definitely grown... just not as expected...  She is going things in Aerynn's way, and is perfect the way she is and we will love and accept her no matter what the future brings her :)

Monday, August 6, 2012

Pushing the Limits

There's only 2 days until our little girl turns 1!!!  Time sure has flown!!!  She is changing from our little baby into a little girl before our eyes! 

We are doing our best to get her through the next few weeks prior to her hospital admission and food challenges etc the best we can, and I have to admit we've been a little naughty.  Aerynn kept trying to eat anything she could put in her mouth.  barks, sticks, dirt, animal food - literally anything she could get her hands on she was trying to eat.  I couldn't handle it so have relented and have been allowing her little bits of REAL food.  Foods that we know takes a few ingestions and days for her to react so we can try to manage any reaction that may build up.

It's worked in the sense that she is no longer trying to eat anything and everything but after 2 days of this we're seeing a little bit of fallout.  She has had a couple of really unsettled nights, has mild eczema breaking out on her face and the most horrible nappies out.  She's been swinging between constipation and diarhoea - no mucous or blood though as yet which is good.  No "proper" vomits as yet, however when she gets a good cry up or upset she will dry retch and have little vomits.  She also has the sorest bottom.  Sadly she has blistered and has big open wounds which are bleeding at nappy changes.  I am struggling to know whether to carry on with this to keep her "happy" or to stop and deal with a child who tries to eat anything and everything. I know if I rang the hospital they'll tell me not to give her anything until we're in there but they also don't live with the guilt of eating in front of a child who is desperate to taste, eat and experience food day in and out... 

 I know we are pushing the limits with her little body.  I love seeing her happy with food (even the small amounts she is getting) but not sure if we are doing the right thing - hey, I know we're probably not doing the right thing...  but then we also were told that if she eats not to stress as she will react anyways - hence the justification for doing a cake smash for her when the weather clears up...  Where does one draw the line on what is ok to tolerate and what isn't?

UPDATE:  within 10 minutes of submitting this entry we found our answer to the above dilemma... we had reached the limit.  Aerynn started power chucking thick mucousy vomit and the same in her nappy :(  It looks like we are going to have no choice but to keep food away from her until she is approved for it in hospital.  I've tried so many different ways to get food into her with the least possibility of reactions but it always fails.  I am out of ideas now, and seeing her distress tonight as she was trying to clear the thick gunk and breath/cry at the same time was heartbreaking...  She is still shaking and unsettled, but better after a feed.  Lots of snuggles on the agenda for tonight and taking my cup of cement to try and permanently drown the mummy-guilt and frustration....

Saturday, August 4, 2012

Black and White

Sometimes you can be told things over and over but it takes seeing it writing for it to really sink in.  I think as much as we've been told that it is a possibility Aerynn has RSS and the food stuff is a side matter I've always thought that it was not taken seriously, and that it was just something to be ruled out then moving on to concentrate on the food thing. 

Today we received a carbon copy of the letter the allergist sent to our paed following Aerynn's visit to the RCH 2 weeks ago.  I hadn't expected to have this letter posted to me, much less expected the detail that was within it!  It is a FULL 2 pages long!!!!! 

Reading it made the hairs on the back of my neck stand up.  Seeing exactly what Aerynn has been through and is going through set out in a clinical fashion in words was very confronting.  As much as I know what we have experienced and seen, to see it set out in black and white kind of formalised it.  Finally it wasn't words floating around that were floating off in the distance end being ignored.  Here is was; documented by a medical specialist.  We were finally being listened to...  but it was so hard to read! 

They have given us a tentative diagnosis of: 

1) Multiple Food Protein Intolerances and Allergies
2) Failure to Thrive and 
3) Mild Eczema. 

So for the moment they have removed the FPIES diagnosis but that will be investigated in hospital.  Aerynns only acute FPIES reaction so far has been to neocate, but she has all the symptoms of chronic FPIES and our paed is certain it will be re-instated. 

What has really made me sit up and pay attention is the following - as quoted from the letter....

"She did not demonstrate any obvious dysmorphic features or nutritional deficiency"

 and 

"as Aerynn is small and petite we support her referral for genetic assessment to be seen with regards to a possible diagnosis of Russell-Silver Syndrome" 

It's hard to put into words, but as much as we've had this suspicion for several weeks now but to see it in writing and not shrugged off as "yeah maybe, but not likely" or "not a classical presentation" is making it seem more a real possibility.  I know it's not a diagnosis.  What I guess I'm trying to express is that as much as we've been talking about the possibility it hasn't seemed REAL.  Now that it is in black and white and the investigation of it is being supported due to the exact reasons we've been suggesting that there is something other than food complications it makes it harder for us to shrug it off ourselves.  

Why tell everyone about the possibility if we are struggling to believe it ourselves?  I guess it is a way that we can start to accept that it is a possibility.  That said, without positive confirmation we've also been able to push it aside and sit on the fence ourselves saying maybe it is, and maybe it's not...  To have another professional think it is enough of a possibility to put it in writing and support the investigation (which I know probably has been done already with the geneticist referrals, but we've not seen it) confirms our suspicions I guess that there may be something more than food - that this really may not be a quick fix thing...  

It probably doesn't sound very logical.  I probably sound like a complete and utter nutter...  TBH I don't care at the moment.  I'm struggling with this.  It is so confronting to see these words written about your daughter, to see your suspicions reflected by a professional and to have to start to accept that our little girl may not be able to be "fixed".  Augh but then I get into the mental argument with myself that RSS does not mean there is something that needs to be fixed!!!  Oh these mental games are really doing a number on me at the moment :/

I guess what we are drawing from this is that we have confirmation on examination and via bloods, urine and stool samples that Aerynn is NOT nutritionally compromised of deficient.  Aerynn does not have any obvious deformities to suggest genetic issues, but they support the investigation and possible diagnosis of RSS which would explain her size, very fine features and FTT.  We have had our FPIES diagnosis put on ice but diagnosis of intolerances, allergies FTT and eczema have been confirmed with further investigations, tests and challenges to be completed as an inpatient.  Nothing that is a real surprise there - but as I said, to have it in black and white puts a whole new REALNESS to what is happening after we've been shrugged off and ignored for so long...    

Wednesday, August 1, 2012

It Must Be Getting Noticable

Everywhere I turned today I got comments regarding Aerynns size.  I've not been in town for almost 2 weeks due to coming down with the flu, but in those 2 weeks something has changed.  I don't know if she is starting to look more mature in her face or if I'm paying more attention to those around me and appearing more open but the number of people I've never met before - strangers right off the street that commented on Aerynn's size today was remarkable (hence writing about it here :P)

I had 3 comments at McDonalds where we stopped off for 30 minutes to grab some lunch.  It didn't help that Miss A was being a determined little almost 1 year old and insisting that mummy was not to carry her and she was to walk everywhere holding mummy's hand :/  (Yep, a stubborn streak there - no idea where THAT comes from **eye roll**)  One mum there came up to me and asked me what was wrong with her, why she was so tiny!  I was rather taken aback and just blurted out that we're not sure but it could be dwarfism.  Probably not the most eloquent answer judging from the quick "oh I'm so sorry" and look of embarrassment on her face.  I don't know why she felt the need to apologise for something that no one could help, maybe her bluntness yes...  I guess I'm going to have to work out what to say if this kind of thing keeps happening...  Until we have a firm diagnosis and prognosis it's probably hard to put it into words...



Then in KMart while looking for spoils for Aerynns birthday I again ran into more unsolicited comments...  3 different individuals, 3 different situations but all the same "oh she's so tiny, how old is she?"  When I say she's 1 next Wednesday they all gasp in disbelief :/  Sure she was sitting in the trolly seat - rather gingerly as she's usually in the baby capsule seat and the seat is REALLY big and open and well for her... big LOL  But I didn't really think she looked THAT out of place there...  Maybe I'm not seeing the forest for the trees? 



* Snoozing in Spotlight today (yay we found a capsule trolley there!!!) - the only comments we got there were about how cute she was and about her snoring and sweating up a storm!!

Later in the evening again shopping, this time in Coles...  Same trolley, same "deer caught in headlights" look from Miss A due to the insecurity of the seat (curse the shops for not having enough capsule trolleys today!!!) and again lots of looks, 2 individuals game enough to comment "oh she's so cute, but too little to be sitting there" was one in particular... 

So one day down town and 8 comments on Aerynns size.  It's amusing though...  She's still our little Aerynn, nothing has changed with her but all of a sudden people feel they have a right to comment on her physical appearance or even apologise for the possibility she may be a Little Person... 

I wasn't ready for today... Really not ready, but obviously something has happened and I need to prepare myself for this kind of situation happening again.  Even if her being this small is only temporary it's only a matter of time before I have the older kidlets with me downtown and they start to notice the looks and hear some of the comments as well.  They love their baby sister and know that she has issues with food, but other than that we've only briefly discussed the possibility that Aerynn isn't going to grow like the vast majority or people and possibly will be defined as a Little Person.  But how does one do that?  Prepare.  Especially when we don't know for sure yet?  I don't want them to think that there is anything wrong with being little to start with, but if people automatically apologise and reel back if it is mentioned they may start to feel there is something wrong.  I might need more help with this than I first thought.  As much as this is what Aerynn is experiencing and is her journey, it is also a journey our family as a whole is on and I think I've just realised how much it may effect the other children - not necessarily negative but they need to be prepared for what other people may say and how they may react...

I know Aerynn will be perfectly Aerynn size, regardless of what is going on within her body, but is that enough for the kidlets to understand???   I kinda feel at times it's a hollow mantra for myself.  I know she is perfect for being her, but it doesn't mean I can't be upset and mourn the fact she may not be what is considered "normal" and have a "normal" life and "normal" experiences... of course that hurts that her future may not be what we dreamed it will be for our little princess, but it could be worse...  it could be much much worse, and she WILL be perfect little Miss Aerynn regardless... but is that enough for the kids to understand - actually I wonder if it really enough for ME to understand at times :/






*Trying on a Pony for size...  Her feet 
may touch the ground... one day.  In 
the meantime some shortening of the 
stirrups may be in order :/                  









Sheesh...  I really wish our appointment with the geneticist was this week instead of in 3 weeks time...  I don't know if I can put this off that long!!!!



*Please excuse the quality of the photos, I'm struggle with the iPhone camera, SLR I'll manage anyday, but a phone camera does me in :/  LOL