Jacob's Annual IEP Meeting

This week was the annual IEP meeting where I sat down with all of Jakes therapists to discuss his progression over the past year and their goals for the next 12 months.

The Occupational Therapist informed me that Jake is at or beyond his age in this department, using his right hand 95%+ of the time, using forks and spoons, doing well with his signs, and using a 4-finger pincher grasp when coloring.  He is drawing, but his goal is to make the plus sign and a complete circle on his own - things that a normal 4 year-old would be attempting to do. She says he does pretty well with the scissors, and LOVES to cut things (so hide the scissors at home!), but he can't quite do a straight line all by himself yet. She said another goal was getting him to button and un-button things.  

The Physical Therapist reported that Jake is quite the runner (bahahahahaha! - ya think?? ) and has escaped from the playground area a few times.  But they're working on getting him to actually listen to instructions and follow them.  She said that he's stopped a couple of times when they called to him, which in my estimation is a HUGE improvement over the last 12 months.  She said that he's only used the toiled 1 time, so there is lots of improvement there.   I explained that Jake does quite well when he's buck nekkid, but the minute you put clothes on him, the reverts.  So, that will be another thing we will continue to work on. 

Speech Therapy was actually better than expected.  He's enunciating several of his vowels, signs several words, and is making slow progress.  I asked if they thought there were issues with his ears, and the ladies all agreed that he listens to instruction.  We decided that his issues are primarily due to stubbornness (go figure!)

Jake is now learning his colors in sign language, follows simple instructions, and they are working on giving him 2 sequential instructions to follow, which he does occasionally.  

He's extremely cognisant of the feelings of others, and will hug anyone who is sad, and try to care for anyone having fits or crying.  

The ladies seem to adore him, which is always a good thing from a mother's perspective. 

All in all, I'm thrilled with his results.  He's at, or above age in everything except for speech, and even in that area progress is occurring.  Yay, Jacob!!

Progress is Progress - Jacob's diagnosed with sepsis, e-coli, and possible meningitis

No doubt about it, yesterday was a TOUGH day.  But it's amazing what 12 hours can do to help your perspective.  That and the fact that when we came in to see Jacob this morning he was peacefully sleeping like a little angel.

 His coloring was less dusky, and he looked like he wasn't in any pain (yay!)  We met with the doctors and nurses and discovered the following:

Jacob's platelets had fallen last night to 17,000 and at one point his white blood cells were as low as 5,000 - neither of which are good numbers AT ALL.  They discovered that he has Sepsis ( http://en.wikipedia.org/wiki/Sepsis and http://en.wikipedia.org/wiki/Neonatal_sepsis ) which is a blood infection.  This means that they have put Jacob on 3 IV antibiotics.  They did not end up doing a platelet transfusion because when they checked his numbers again later in the evening they were rising on their own.  And since they did not do the transfusion, they did not do the lumbar poke (spinal tap) because they need the platelets to be higher to help combat infection and to 'plug' up the hole that his created when they take the spinal fluid from his back.  However, once the platelet counts are up, they still want to check the spinal fluid because they need to find out if the sepsis has spread to Jacob's brain.  If it has spread to his brain then the antibiotics will have to be administered for another week. Right now, the antibiotic regimen will be a 3 week process.  If the sepsis has spread to his brain, they will have him on IV antibiotics for 4 weeks.  This pretty much means that Jacob will be in the hospital for at least 3, and possibly 4 more weeks (sigh). 

However, I can't help but feel blessed that they found the sepsis so quickly.  I had anticipated 3-day cultures and not having any answers until Wednesday.  The fact that they found the Sepsis so quickly means that they can treat it quicker, and were (hopefully) able to ward off any of the major side effects (or death) from it. And, from what I've read about Sepsis, this is not something you want to mess around with.  It's serious stuff, and darned near impossible to diagnosis in infants until you're at the major organ failure stage.  How blessed we were to already be in the hospital around all of the medical care he needed when he tanked last night. 

We also discovered later in the day that Jacob has e coli in his urine, but that issue should be resolved with the antibiotics he's already on.  They took another echo cardiogram this morning and told us that no damage was noted to the heart from his 'episode', so what that means is that once the antibiotics have run their course, the cardiologist will continue with Jacob's 3 new heart medicines which he will be taking until he has his heart surgery.

I'm getting the impression that waiting 6 months until his surgery is fairly unattainable - we're looking closer to the 3 month mark.  But I guess miracles can happen, so I'm choosing to hold out hope until someone sits me down and gives me a surgery date for Jacob. :\

Other than all of the new information to digest, today was pretty uneventful.  They let Jacob begin to feed again, so I got to bottle feed him today and cuddle with him (I think that was more for my benefit than his!) for a while.  And it was nice to hold him and know that today was a relatively pain free day for him.

At the end of the day, although we are faced with the fact that Jacob will be in the hospital another month, he is in good hands and he is making progress.

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