Sep 1, 2010

Oldest and Youngest

Jacob, our oldest, is 12.  After a lot of debate and discussion, we have decided to homeschool him this year again and not send him to public school for middle school.  (We homeschooled him K-4th grades, public school for 5th.)  He is THRILLED with the idea.  Quick version ... he has Asperger's Syndrome (on the autistic spectrum) along with some other neurological and medical challenges.  He was overwhelmed by the over 1000 students.  Even 2 weeks in, they still had not been able to set up accommodations for him, etc. etc.  So we decided to homeschool.  We will have heavy emphasis on life skills and social skills. 

By having him home, I've already noticed some benefits to me as well.  (Always nice.)  For example, Manny was doing silent retching the other day in his car seat and I would have never known.  Jacob was sitting beside him and told me so I could handle it.  Jacob also can carry heavy objects.  He can watch/entertain the baby while I'm say on the phone or something.  And the baby is coming to really love his big brother.  Jacob never spent much time with him before - I don't think he wanted to compete with the other 4 kids.  But now, they're forming a very special relationship.  So sweet. 

Medically new thing  ...   For his 12 year old check up in July he did a urinalysis and it came back abnormal.  They did several spot checks over the next few weeks and every one came back abnormal (protein very high). 

Today the doctor ordered quite a few tests for Jacob.  She felt this needed to be explored further.  May not be a huge deal but it could be. Our doc is very conservative so if she is going through all these tests, she must be a little concerned.  I looked up possible conditions and none of them are very good.  To have protein periodically might not be a big deal but to have it every time of day and every time it's tested over a period of a month, it points to something.  So thanks for prayers for him. 

Now for the youngest ... Manny.  He usually has visits with this doc every 1-2 weeks and it's been over a month.  So I had a lot to discuss. 

"Kaley put a newborn hat on me and made Cat Ears."

1)  Changing him from Palliative to Therapeutic care.  She agrees!  It's done.  She changed his diagnosis to be only "Hypotonia".  Everything else is just speculation so until we know otherwise, that's all he has.  As a result, he will be able to receive more services such as more Physical Therapy, serial casting (for his contractures), etc. 

So what?  Besides the additional services he can receive now ... it also means that he no longer is listed as having a terminal diagnosis.  That's HUGE!  They originally gave it in May when they saw the MRI and suspected he had x, y or z.  Those have all come back negative but the diagnosis of terminal stuck.  So I basically asked that it not be put back on him until we knew what it was.  She agreed.  We even talked about revoking his DNR status.  And I told her that it was written in his pre-adoptive name.  And that it's not valid unless we re-do it in his new name.  Which I haven't done and she is not recommending at this time.  So we dont' even have that any more.  (A future diagnosis could change all this but for now, I'll take it.)

2)  He needed to have a specific type of blood test (For SMA - Spinal Muscular Atrophy as the one done at a week old might have been a false negative.)  But ... his insurance doesn't pay for it.  And since it's a genetic test, it's very expensive (read: Not in our budget).  His doc recommended that we contact a few places and see what they can do about it.  She is going to contact the most likely one for us today. 

3)  His "MRSA" bumps are back.  He has 3 currently.  One on his forehead, one on the front of his thigh and one on the back of his other thigh.  She was able to gently burst one of the blisters and get enough fluid to send in a culture to see if this really is MRSA or something else. 

4)  His gtube cellulitis is all cleared up.  I noticed how it is always in the same place and same shape ... just about the shape of his mic-key button.  So I have been putting a little 2x2 gauze between his skin and the button and instantly it cleared up.  She said she thought it was likely an allergy to it too.  And even though the 2x2s will keep it "dampish", it's better than letting it get infected again. 

5)  His retching.  Remember those?  We have discovered what triggers them.  Once we adjusted his feed rate and times of feeding, those went away completely.  BUT ... then he started getting them again and I noticed it was every time he was on an antibiotic!  He would retch like crazy until the course was done.  And during those episodes, the only thing I can do is drain his g-tube.  I would get like 50 cc (near 2 ounces) of mucus out!  Then he would be just fine.  If he doesn't get his dosage, he won't retch.  So clearly, it upsets his tummy.  But at least I finally know what to watch for! 

6)  Growth ... his GI doc put him on a certain amount of pediasure as his feeds. I thought he was gaining weight too fast so I cut it back just a bit.  Today, he is now 21.9 pounds!  Almost 30 inches.  So he is growing very quickly.  Still on the shortish side but is getting a bit chunkier.  (Love those chunky legs).  But too big and it will make it harder for him to breathe and diminish any hope of him becoming mobile.  He is not as active as a regular 14 month old so he doesn't need the same amount of calories.  Doc said to keep it at this for now and then we'll review his weight again next month. 

There's more ... but that's enough medical terminology for now.  (Yes, when I speak to medical personnel they always ask if I'm in the medical field since I know all sorts of stuff off the top of my head.  Guess that's what will happen when you have 6 kids with special needs!  Degree courtesy of Google. LOL)

1 comment:

  1. YAY Manny! You have such a beautiful family. Manny is always prayed for in this family! We think of him daily. Blessings!