Sunday, October 21, 2012

Long Overdue Updates on Parker

I realize I am long overdue with updates on Parker.  I'll try to catch everyone up in this post.  CAUTION:  This could take awhile.

For the most part, Parker has been fairly healthy lately.  He still catches colds easily and gets respiratory infections a lot but luckily we haven't landed in the hospital due to these illnesses in awhile now.  I think this is mainly due to the fact that Parker is now bigger, stronger and able to clear his airway better on his own.  We still keep Parker out of public places for the most part to prevent him from catching bugs; however, we have been a bit more adventurous in the last couple of months.  He's been shopping a few times and out and about more.  That will likely come to a halt again here soon with the winter months and cold and flu season but we'll see.

This summer I had posted about how Parker had C.Diff again which caused him to have diarrhea for about two months and I was about to lose my mind.  Well, that did clear and we made the decision to take Parker off of his anti-reflux medication as that could have been a contributing factor.  Coincidence or not, he got rid of the C.Diff and has been good on the pooping front for awhile now.  Hallelujah! It's unusual for a child with a trach and airway issues like Parker not to be on an anti-reflux medication but we haven't seen any alarming effects.  We'll just have to see what his next bronch looks like and make sure his airway is handling things OK.

Parker recently had some repeat blood work done on his immunoglobulins.  Last year they tested him and many of his levels came back low.  They didn't get terribly worried about it at that point and just asked that we repeat the blood work in a year.  Well, we did it again this year and the levels were still low. So...they recommended he get a couple of extra immunizations to help protect against some infections and wants us to see an Immunologist. 

My first reaction was, "ANOTHER SPECIALIST? I thought we had already seen all the specialists at Children's Hospital."  Just kidding.  We have that appointment in a couple of weeks and I am a bit nervous as to what they will say or recommend.  I know there are things they can do to boost a child's immune levels but most of those come with pretty yucky side effects.  I'm hoping that even though Parker gets sick a lot it's not bad enough to require frequent hospitalizations so maybe they will take that into account.  We shall see what the recommendations are...

There are many different surgeries/tests/etc. that Parker's Doctor's recommend we do that would require he be put under anesthesia again.  Those include:
A repeat MRI of Parker's brain (Neurologist)
A repeat MRI of Parker's spine (Neurosurgeon)
A repeat CT scan of Parker's skull (Geneticist)
Replacing Parker's ear tubes (ENT)
Surgically removing some extra skin that is growing in Parker's airway by his trach stoma (ENT)
Injecting Botox into Parker's eye muscles (Neuro-Opthamologist)
Some various Urological surgeries, (Urologist & possibly Nephrologist)
A repeat bronch of Parker's airway (ENT)
Doing scopes/biopsies in Parker's lungs (Pulmonologist)
We, obviously, don't want to put Parker under unless we absolutely have to.  We usually try to coordinate so that several different procedures can be done all at once when we do put him under.  At this point, we already have such a long list and too many Doctors involved that these couldn't all be accomplished at once. we just have to prioritize which things need to be done soon and what items can wait.  We'd like to wait to make any decisions until we've seen all the specialists we have scheduled in the next couple of weeks and then decide from there.  It's a difficult position to be in as parents.

It's been busy and will continue to be busy as far as appointments go.  As I mentioned we have a lot of appointments with specialists going on right now.  From mid-September to mid-November we have/will see the following:

Pediatrician (2-3 times)
ENT (twice)
GI Specialist
Audiologist (three times)
Physical Therapist (every week)
Speech Therapist (every other week)
Respiratory Therapist
Occupational Therapist

Whew!  That wears me out just looking at it.  Even though this seems like a lot of appointments in a short time I am grateful that this is fewer appointments than we used to have to go far.  Hopefully we can get in to see all of these Doctors before cold and flu season really gets under way and then we can stay out of the germ-infested offices for the worst of winter!!

Parker continues to make progress developmentally in all areas.  

He is "talking" a lot more now.  He babbles a lot and giggles all the time.  We love it.  He also will occasionally use his version of a sign for "more" and "up".  He continues to communicate with us with his eyes, vocalizations, and body movements. Most of the time we can anticipate his needs/wants but there are times that we simply don't know what he wants or what is wrong.  This is why we have been trying to work on new and different ways that Parker can communicate with us and his speech therapist is helping with this.

He is getting around with his walker/gait-trainer really well.  He especially does well on the new laminate floor Paul put down in the dining room and kitchen.  He is able to get himself where he wants to go for the most part but usually gets stuck in a corner or at the end of the room and needs help turning around.  He doesn't really "walk" to get there, it's more of a scooting motion that he does with both legs but he's still able to get where he wants to go.

He also can get around really well on the floor.  He rolls over or scoots on his back and can get across an entire room in no time.  He really wants to crawl and can get onto his hands and knees but he hasn't been able to figure out how to coordinate all the motions enough to move forward.

He holds his sitting position really well now when we put him there.  He has gotten into a sit a couple times on his own in an attempt to crawl.  It wasn't his intended action but he is pretty proud of himself when he gets there.

Parker is going through a phase right now where he doesn't want to go to sleep at night.  He just wants to play and "flirt" with the nurses.  So...we now have to lay him down in his bed without hooking up any of his machines or giving him anything to do.  The nurses are also turning the lights all the way off so he has nothing to stimulate him.  Eventually he gives up because he has nothing to do and falls asleep.  Then the nurses get the machines going and do Parker's assessment and cares while he's sleeping and he doesn't even know it.  What a silly goose.

We believe his vision continues to improve.  His eyes still wander a bit and don't always work together but he's able to reach out and grab items that he wants - items as small as a raisin.  He also can track us from across the room and if I do nothing but smile he will smile back so that tells me he can see pretty good from a distance.  His eyes still have what they call "nystagmus" which means they kind of bounce around a lot.  This is especially noticeable when he is looking at lights, is tired or really focusing on something.  We see the Eye Doctor in a couple of weeks so we'll see what the recommendations are.  Previously he had recommended we inject Botox in Parker's eye muscles and I was very nervous about that.  I'm hoping he feels that he's making enough improvements on his own that that won't be necessary.

We think his hearing is stable at this point and the tests he has had support this.  He actually responds to louder noises really well even when he doesn't have his hearing aids in.  Our struggle has been trying to get Parker to leave his hearing aids in.  He takes them out all of the time and he has broken the ear molds numerous times.  He does seem to be getting better with this though.

We continue to slowly offer taste trials.  Parker doesn't want us to put a spoon or utensil in his mouth and fights it a lot.  However, once he gets a taste of the foods we are offering he seems to like them very much and appears to be swallowing.  Previously, Parker aspirated the taste trials we offered but doesn't seem to be doing that anymore.  I just need to be more consistent and vigilant in doing the feeding trials with him.  It's a big commitment and takes a great deal of time so I haven't jumped in an much as I need to.

Parker's GI Doctor wants us to start experimenting with soy so we'll be beginning that very soon. Parker is still getting his highly specialized formula through the g-tube but they'd like us to challenge him with soy and see if he can tolerate it now that he's older.  

Parker continues to have a lot of medical issues and developmental hurdles.  However, he's shown great progress and continues to amaze us with all that he has accomplished and overcome.  Our biggest prayer requests right now are:
1) That Parker will continue to be healthy.  That we can stay out of the hospital and manage any illnesses effectively at home.
2) That the upcoming Doctor appointments will go well.  That we will gain helpful information and not be overwhelmed by all the recommendations.  That we will be able to know what surgeries/treatments/procedures are in fact necessary and helpful and to be able to prioritize what things need done now.
3) That Parker will continue to make developmental progress.  Specifically that we will be able to find a way to communicate with him effectively and that he will be able to learn how to crawl and walk.
4) That we continue to enjoy our little family and find the blessings in everyday life.


  1. Sara, you are an amazing mom and advocate for Parker!