Immunology 12.1.09

Tuesday was one of those days. Whew! Lord knows I absolutely love Gabey's Immunologist, and she is so reputable in her field. But we usually wait for 2 hours in our exam room to see her. This time it was right at 3. If it were not for counting bears, sorting cups, 3 cups of water, books, and chairs to climb on, we'd have lost it (sooner).

Gabey is doing super well. We discussed his last 6 months of health and developmental history. We went over what illnesses he had, etc. Her idea of doing 30 days of antibiotics for each ear infeaction instead of the normal 10 days worked. He has only had 1 so far this sick season and has been ear infection free for a good month. YAY! His ears looked great Tuesday. YAY!

We discussed how we have been back on "lock-down" for the winter. She gave him his first H1N1 vax. He has to get the 2nd one in a month, and if her supply runs out, she said she'd find SOMEONE in the Children's Medical hospitals to give him one January 2. After he gets that shot, we can try taking him back to church once a week for a few weeks. If he starts picking up sickness, we will have to go back to lockdown until April. He needs to be exposed to SOME illnesses or he will never develop antibodies without immunizations. But it is such a balance of risk. I don't want to be selfish, but the prospect of being in church with my husband and all my kids ALL AT THE SAME TIME is tear-instigating. Don't take church attendance for Granted.

Gabey had to get his regular labs to check his white blood cell and calcium levels. The past 2 years his calcium levels have been normal, but if it drops, it will need supplements so he doesn't have seizures. We should know the results by Monday.

SHe also asked us to let him participate in some research she is doing. She chose 25 kids and he is one of them, kids with various types of primary immunodeficiency to see how evaluating the RNA and DNA of immunologically deficient kids can be used as a predictor for the future ailments and such. So he got started on his first blood draw, which he loved. uh yeah. We won't get his individual results because it is research, not a diagnostic tool. But after a few years when it is published in a medical journal, she will give us a copy and since there are only 25 participants, we will possibly be able to recognize him in the literature and learn something of her results. I think what she is doing is fascinating!

So apparently my family could tell a HUGE different when we visited Nana's last week vs. how it was in May when we visited in regards to Gabe's behavior issues. He is naturally contrary. He is precious and sweet, and also has a hair trigger temper. He is very independent. We have had a focus on training and increasing therapy simply to work on these issues before we take more children into our home. ITs a priority to us, and we feel really good about the positive changes in Gabe. He still has his free spirit, but he respects authority. Even still, if he loses it, it is extremely dramatic.

Apparently any doctor in the Children's network of physicians and specialists and therapists can read the notes on his file of any of the other Children's people. So the immunologist suggested that it has all been noted in his file what I wrote above. ALthough he is much improved, he still has sigificant sensory issues, a severe lack of language (which causes frustration) and makes him behave almost autistic in nature (people ask me if he is autistic). He also needs external support and often removal when he gets overwhelmed because it is so dramatic.

Kids with DiGeorge Syndrome, especially boys, are at very high risk for having schizophrenia or bipolar disorder. In fact, they have been doing studies in the recent years in mental hospitals, doing FISH tests on men with S and BDP to check them for DiGoerge and have found that many of them were never diagnosed with DiGeorge because they did not have the tell-tale heart abnormalities.

Gabe also was born addicted to meth. At two months old he was addicted to morphine after his open heart surgery. The neurologist says this puts him at high risk for all the alphabet disorders (ADD, LD, ODD, CD). Add to that the DiGeorge risk for LD, ADD, ODD, and mental health issues. And then add on top of that that his parents are both addicts and his father has bipolar disorder. Yeah, crap, that is what I say.

So the verdict? He needs to start getting help NOW from a Developmental Pediatrician or Child Psychologist to work on behavior and sensory issues even more during this critical window.

I know this is necessary and I am grateful she suggested it! Praise God! I am much more at ease now taking him places because he has so much improved. But he still could use some extra help. Parenting him is different than parenting the compliant, happy-to-please child without sensory issues. I do sometimes get bummed that he has to deal with all of this. I mean, it is so UNFAIR. But I can choose to sit and have a pity fest or just get up and move on. And I choose to move on.

Le me say that Gabey is a treasure. He is so sweet. His hugs are precious. He is everything I prayed for in a son for 10 years. I will not be discouraged because of what he has to face. I committed to raise him, not in spite of his difficulties but to accept him and help him meet his potential. I committed to raise him according to Biblical principles. Does he had a hard time in life? Yes. Can I take my eyes off of him for a second? No. Is he amazing? Oh ,yes.

When Hannah was diagnosed with ADHD and LD in early elementary, I struggled with a lot of negative emotions. I had not planned for that. Fast forward to today and she is a great student. She is very responsible and knows how to put her energy and creativity to good use. She knows how to guard herself for the most part against impulsivity. It hasn't been a tragedy. Its been a blessing. I see DiGeorge the same way...with the immuno suppression and heart problems and all the therapy and even the fact that despite a year of intense speech therapy, some days I think he will be 25 and still using signs to say "more." So what? Over the weekend he repeated me when I said something and though he only did it a couple of times and it hasn't happened again, there was a burst of applause, tears in eyes across the room from all the family. Kids who pick up 7 new words a day are awesome. But man, when a kid just struggles and cannot talk and is SO frustrated, and then makes some new sounds it is like heaven opens and the glory of the Lord shines down. That is amazing!!!!

I am blessed, so blessed, to be his mommy. Thank you Lord!