What does Chloe love best???  If she's uncomfortable, or just feeling a little blue these are some things that have put a smile back in her heart:

• laying close to her mommy & daddy (cheek to cheek - delicate fingers intertwined)
• mommy's off-key renditions of songs & nursery rhymes
  
• touch - Chloe loves to be gently touched - especially stroking her silky hair & head
• books, books and more books (Chloe loves to be read to - whether it is the sound of our voice, the familiarity of it or just the pictures and stories - we could honestly read to her 24 hrs & it wouldn't be enough) & on Saturdays Daddy reads Chloe the highlights from the newspaper (she's a very learned little girl)
• soft music (either on her walkman & earphones or from her music boxes)
• prisms - magical crystal prisms (we have them hanging in all of our windows and when the sun hits them they create hundreds of colourful rainbows that dance from wall to wall, ceiling to floor)
  
• massage & therapy - she loves to have her legs massaged and exercised
• rides in her new Panda stroller which is a specialized stroller that fully supports her delicate frame (Chloe loves to feel the sun's warm rays shining down onto her beautiful face and the soft breeze blowing through her silky hair)
• and who could forget Chloe's favourite puppy, Blue, from "Blue's Clues", if she's feeling a little blue,  we put in her favourite videos and we all sing along to the fun little jingles

Medication - Clonazepam (Generic of Klonopin)
This medication has helped tremendously in relaxing our darling girl, it was suggested by many other families who have used it with their children.  Before we started her on this med she was having muscle spasms and myoclonic seizures all day long  which in turn caused her a great deal of discomfort and increased her irritability. We found that we had to play around quite a bit with the dosage but we finally seem to have found the right balance for our sweetie (if you wish to know about Chloe's dosage please email us at clffedorak@shaw.ca).

Pain Medications
We have finally found a wonderful physician who has addressed our concerns for the pain Chloe experiences in her spine (our poor sweet darling has had to suffer unnecessarily for such a long time because previous physicians have been afraid to prescribe pain medication).  For the first time since I can remember our darling girl is now relaxed when we move her from place to place.  I am crying as I write this because it has been so hard trying not to hurt our darling girl when we move her.  To change her diaper we had to carefully slide it under her spine without lifting her legs, etc. - it breaks my heart that previous doctors just shrugged this off and said there was nothing that could be done.  Not true!!   The most important thing for us is Chloe's comfort & enjoyment, her life is way too short to have to suffer through - we love her too dearly for that.


Therapies
We tried physical and occupational therapy but unfortunately at the time we started it Chloe was at an extremely difficult stage of the disease - where any overstimulation, any touch, and anyone other than her mommy touching her caused her to cry out.  We made the decision that her enjoyment and comfort came first above all else so we put a hold on this therapy for a while.  Chloe is now 16 months and she is much more relaxed so we think we will look into physical therapy once again.

Chest therapy
As Chloe has suffered a bout of pneumonia and a recurrent respiratory infection we have found that chest therapy, percussion, and vibration really helps to loosen her secretions.  We just recently started a chest therapy regimen performed twice daily, immediately following nebulizer treatments. 
   
Cranial-sacral therapy
We cannot say enough good things about the benefits we have witnessed from this very gentle touch form of therapy.  Using the gentlest touch (no heavier than the weight of a nickel) the therapist works with the sutures or joints in the skull and sacrum and takes tension and irritation off of the nervous system.  The cranial rhythm is the inner most rhythm of the human body, "the cranial rhythm is the first indication of life at the point of conception and the last flicker of life after the physical death or passing on."  We are still not sure exactly what it is that the therapist does, but it is more how Chloe has responded to it.  During each session Chloe becomes so wonderfully relaxed, her breathing becomes less-raspy and quite often she is fast asleep by the end of the session.  We find that immediately after and the whole next day Chloe does not require as much suctioning of her secretions - which is so great!!

Massage & Warm Baths
Chloe loves to be massaged (especially her legs - her arms are much more sensitive and she doesn't tolerate movement of her arms too much).  We  found a wonderful Infant/Baby Massage video with great techniques for relaxation and for relieving Krabbe symptoms (ie. stiffness, low tone, constipation, irritability, etc.).

Ohhhh baths - the wonderful feel of warm water swooshing back & forth along her lovely little body - Chloe loooooovvvvveeeessss bathtime!!!!!!!!!!!  When Chloe & Mommy aren't having a bath together and now that she is getting so long we found that the easiest way to bath her now is with one of those body sponges (foams) that lay in the bottom of the tub.  We fill the tub high enough so that she can lay on the sponge on the bottom of the tub and we can move her back & forth along the bottom in a rhythmic motion and the water gently swooshes over her.  She seems to really enjoy this.

Secretions - Lots & Lots of Gunk!!! Yuck!!
Chloe and, from what we have heard, many of the Krabbe babies have problems with excess secretions. Thank goodness for electric suction machines (just like those at the dentist).  We are now suctioning at least 1-1/2 - 2 cups of secretions daily from our little sweetie.  You wouldn't believe how much GUNK builds up.  Chloe suffers from a lot of chest congestion so in order to break up the secretions so that we can suction them out, we do a number of techniques:

•  positioning (a change of position is very important so that secretions don't accumulate in one place) - we almost always have Chloe elevated so that the risk of aspiration is reduced (we purchased an 8" foam wedge from a foam shop which we use everywhere, under her mattress, on the coach or anywhere that Chloe is)
• chest therapy (we have learned a few techniques from Chloe's therapist - how to lightly tap on the sides of her chest and her back to loosen secretions, etc.)
•  we have also learned how to do postural drainage (but we suggest you speak to a therapist before performing any of the techniques we've used)
• cool mist humidifier (this helps with Chloe's breathing & chest congestion) - it is especially useful when she is suffering from a cold or the flu
• nebulizer treatments - We have once again started Chloe on nebulizer treatments to open her airways (with meds Ventolin & Pulmicort) as she has recently suffered another respiratory infection.  We do the treatments twice a day and immediately following the treatments we do chest therapy to loosen the secretions and bring them up for suctioning.
  
• vibration - Chloe loves being soothed by vibration (there are a number of products on the market - speak to your therapist - vibrating mats, vests, etc.) - we were able to find a hand-held massager which works great for working on her chest and back.

Seating/Positioning
Chloe has a lot of sensitivity in her spine so we have had a hard time finding seating that is soft enough and supportive enough of her entire body.  Krabbe babies have low tone which means that they don't have the muscle strength to support their bodies in an upright position without aids.

Seating we have used:

• Foam Wedge/Comforter Creation - we have created a very comfy seat for Chloe that consists of an 8" foam wedge and on top of that we put a folded up comforter and on top of that is a sheepskin wool rug and then a soft receiving blanket and then Chloe is lovingly placed on top - ahhhhhh comfort!!!  My husband says I should have been an engineer.
• Bean bag chair - We found that a bean bag chair is great for putting into all types of positions as it comforms nicely to their sweet little bodies.  But it seems to require refilling with styrofoam bits quite often as it becomes too flattened by use.
• Boppy Nursing Pillow (or Horseshoe Pillow) - We lay Chloe on her side, her head is on one end of the horseshoe and her back is in alignment with the longest side to support her and the other end of the horseshoe goes between her legs (she is extremely comfortable like this)
  
• Electric baby swing - Chloe loved the gentle motion of the swing but she is now 20lbs and 30" long so she has outgrown it's capability
• Tumbleform chair - an occupational therapist at the hospital gave us this and it worked well for Chloe for a short time but now it seems to push her legs in too close together (she is most comfortable with her legs splayed in a frog-like position).  Maybe with physical therapy she will be able to go in this position once again.
• Panda stroller - we recently received a specialized stroller that is a mix between a stroller and a wheelchair and it comforms to and provides support to Chloe's delicate frame - it has been great to get Chloe out into the fresh air!!
• Car Seat - we had a lot of trouble with this one for quite a while until we finally came across a model that works wonderfully for Chloe's sensitive back and spine.  We purchased the Cosco Alpha Omega from Walmart and it is great because it reclines back in 3 positions which was so good for Chloe because it relieves the pressure on her spine.
• Standers - we haven't tried this but we know that others have tried it and their children loved it.  Unfortunately for our darling Chloe it is not an option at this time as any gravity  pull on her spine is unquestionable.
• Chloe's Famous Moses Basket - since the HH Symposium in Buffalo word is quickly spreading about Chloe's fabulous & comfy moses basket that has become such a wonderful bed, car seat, transporter, lounger, etc.  It is larger than most moses baskets (33" long) and with Chloe being such a big girl now (31"), she is still able to fit in it nice & cosy (see attached photos of Chloe relaxin in her basket).

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