June 25, 2015

Peanut Butter, Measles and the Pink Baby Pool

It's that time again.  The time when I have an influx of emails and texts asking about Addison and I realize I have been negligent in keeping our prayer family updated.
The last few weeks have been a little up, a little down and some plateaus.

Addison's last blood work revealed some questions concerning his liver.  We have no idea what the scope of it is yet but we do ask your prayers.  His doctor wants to run further tests and also do hepatitis screening.  You may remember his thyroid functions were off on the previous round of labs, as well and we have been unable to do the repeat testing.  It is so hard to do labs on him because of his weak veins.  They have only ever been able to get a draw from one location and that one rarely lasts until they get enough blood for all the tests various doctors have ordered.  So we do a lot of prioritizing and waiting for veins to recover in between draws.  Hopefully, we can get this done in July and get a few answers.

One of the things we've been working on the last two weeks is adjusting Addison's feeding.  Before he came down with the croup in March Addison was making significant progress with tiny bits of soft foods placed on his molar ridge.  Unfortunately, he stopped eating all together when he got sick.  We've been able to make progress in other areas but he has never done well with any solid foods since that time.  Last Sunday his SLP came in from Baltimore and spent 4 hours with us.  We mixed up peanut butter and honey with almond flour and rolled them into itty bitty balls, about 1 gram each.  When we place these on his back molar ridge they stick which is ever so helpful for our fellow because he does not need to work on moving it or keeping it where it needs to be.  This allows him to fully focus on "bite, bite, bite."  It is so cute when he says that while moving his jaw up and down.  He was doing excellent with this and progressing each day.  One gram is equal to 4 calories and 32 grams are equal to one ounce of his fortified milk.  He was up to about 20 grams a day by the end of a week.  However, the work really took him a long time so it was like having 3 extra feedings a day.  So we opted to reduce his milk time, taking from 8 ounces a day to 6 ounces.  He began losing weight again.  We debated the benefit of gaining real food action with the weight loss and decided to consult with his feeding team.  After 2 days deliberation we all agreed it was better to back off on food to make sure he was getting enough milk so that he continues gaining weight.  It is everyone's opinion that weight gain should be the top goal.    Four days later he is still see-sawing up and down within 5 ounces.
On the food front... If we think about chewing/straw drinking the easiest way for someone to get food to the swallowing stage is to have it placed on the back molar ridge.  This requires the least amount of coordination and effort to chew and swallow.  The second stage would be the cheek pocket (take your tongue and push out your cheek and you will  know what I mean).  Third is to place a straw or food over the teeth at the corners of the mouth.  The hardest is at midline on the center of the lips and tongue (the way most of us sip from a straw).   Addison still works to eat at the molar ridge but has made excellent progress and gained strength.  His specialists suggested we try moving on to stage 2, the cheek pocket area.  We have been working on this the last week and a half and he is doing very well with his straw.  (No, he does not suck it up.  That is a lot of coordination and hard muscular work he has not developed yet).  Because it is so hard to get purees on a spoon to this area she suggested trying purees in a syringe so he can practice moving food where it needs to be and build musculature in the cheeks.  He is doing very well with this.  We opted for yogurt in place of vegetable puree to give a little more calorie boost.  He is up to 5 ML total today.

As is so Addison, his greatest trouble still resides in his mouth.  In May, following the removal of the tumor under his tongue, he was making excellent progress on feeding.  He actually completed some feedings in just 30 minutes (versus 90 minutes)!  Fourteen days post-op his mouth looked amazing.  Two days later during his morning mouth therapy we noticed the growth was back just as it had been prior to surgery and there was a second growth on the lower gum ridge in front of one of his incisors.  It was with amazing frustration I called his surgeon.  He went back to the drawing board and decided to try a round of steroids and see if they had any impact on reducing the growths.  After ten days there was no change.  We are going back to brainstorming on this.  Addison had stopped sucking on his tongue following his surgery.  Since the new growths have appeared he has returned to this detrimental behavior.  He has become more sluggish in feeding ans has become resistant to food and therapy at  time.  Addison's lead SLP feels certain this will have a negative impact on his Oral Placement Therapy and Development and will slow or stop his feeding progress.  She feels there must surely be a way to identify and permanently get rid of the tumors.   I am wondering what could be left if we've tried surgery, antibiotics and steroids with no or very short lived results.  Blast.  We are waiting from word from his surgeon as to how we will proceed.

In the meantime, Addison has had many teeth coming in since his surgery.  He went from 1 or 2 to 10 in this short time.  Which is wonderful because there was question as to whether or not he would get any teeth when they had not erupted by his second birthday.  It takes forever for his teeth to actually come through.  And he has multiple molars coming through at once.  (His teeth placement is completely random, which is not uncommon for children with DS).  He has been working on a back lower right molar since February and it is still not through all the way.  Often his mouth is bleeding from the effort.  And the point of this is to say, the poor fellow is in pain.  So I am hesitant to say his issues with eating, resistance to therapy and tongue sucking are related to the growths.  There is simply too much going on in his little mouth at once to zero in on just one thing.  And while I am certainly very concerned at the return of these masses, and I surely want to do what is needful for Addison to eat and speak, I don't necessarily want to rush back into surgery if it isn't necessary... especially, because 2 weeks is not a very long outcome.
And then Sunday morning Addison woke up covered in a red sand paper rash.  After three weeks with a peculiar rash of my own, which was not responding to treatment, I ran it by my doctor during an appointment on Friday.  As it turns out I had shingles.  Laughingly, my doctor informed me it is most commonly triggered by physical and emotional stress.  She informed me I have enough of both in my life to cause a good old case of shingles and she suspects this will not be the last of it.  Shingles is only contagious to those who have not had chicken pox or the chicken pox vaccine.   Addison's pediatrician (who shares our very laid back view of such things) has always cautioned us to exposing Addison to the varicella virus.  Because of his weakened immunity and pulmonary weakness he feels it could be devastating to Addison.  Even though he has always advised against vaccinating our children for the chicken pox, in light of Addison's diagnosis he recommended we have the entire family vaccinated to provide him with a safer environment.  The irony being, because this is a live vaccine and because of his compromised immune system during seizure treatment he has not been able to receive the vaccine himself.  Which means he is the only person in our family not immune to the chicken pox.  Furthermore, a person can not catch shingles and the only way to get chicken pox from someone who has shingles is by direct contact with the rash.  That's relatively easy to avoid then.  Unless, you are a nursing mother and the rash happens to be on your chest.  And your child can't get nourishment from any other source.  Blast, again.  And how much more annoying to find out he's been exposed for nearly three weeks and I didn't even know it?  But then I reasoned he has been exposed for three weeks and didn't break out with the chicken pox so it must be okay.   Until two days later when he woke up with a rash.

But that's not the end of the story.  A few weeks ago Addison had his MMR vaccine.  Allen and I were very concerned about giving him the MMR.  He is at a high risk for side effects and also at an increased risk for a diagnosis of autism, which may or may not be linked to this vaccine.  Seriously, we laid awake talking and praying about this for some time before finally deciding to have the shot.  We were thrilled when he didn't run the crazy high fever our other kids got with this vaccine and actually had almost forgotten about the whole thing.   Leave it to Addison to keep us guessing.  As it turns out, some people can develop a small case of the measles with the vaccine.  According to the CDC this is not of any concern because the virus can not multiply so it's spread is limited and it will pass its course without any issues.  Nine kiddos and Addison has to be the one to cause trouble.  Dear Lord, I love that boy.  But could he not go ten minutes without causing every member of this family to worry?

I received Addison's updated evaluations and IFSP this week.  For almost every area of development he is still placed around an 8 or 9 month old.  Some days this is very discouraging.  Tuesday was a rather low day for me.  However, overall, we continue to be amazed at Addison's progress in the last 6 weeks or so.  His receptive language skills seem to be growing exponentially and we often think we are hearing more expressive language as well.  He is using his signs more purposefully than ever before.   He is also beginning to take an interest in toys other than swinging them around and chewing on them.   He absolutely LOVES our cats and when we are outside he will go crazy if they come into sight.  He will work so hard to try to get them and if they come close enough he delights in petting them as long as they will tolerate it.

Addison's gross motor skills have increased considerably.  The baby pool has really been a catalyst for him to rotate and move into quadruped.  Unlike other children who seem to hesitate as they get used to the buoyancy, Addison gained confidence with the water very quickly and has developed skills in the water which he struggled with on the floor.  He has transferred these skills to his floor time.  In the deep water, he uses his flotation device to propel himself around kicking his legs.  This is excellent for strengthening his lower body which is otherwise very difficult for him.  An added bonus to the pool is he has always been very affected by hot weather.  When he seems to be wilted and not very responsive all we need to do is put him in the pool and he perks up, eating better, giving us smiles and playing cheerfully.  Some days he will even skip his typical morning nap if he is playing in the pool.  There have been times when he wouldn't eat we sat him in the baby pool and he happily drank his milk.  He still leaks a lot of milk when drinking from his straw so this ends up being a milk bath.  But I have found with Addison you do what you have to do.

And on that note...

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