I've been busy with my pregnancy (32.5 weeks now!!) and he's been SO stable lately, that I haven't been around here as much! Plus, we've been thoroughly enjoying our summer, outside pretty much all day long!
Connor saw his pulmonologist today, the dr that we absolutey LOVE. He's the one that really encouraged me to keep fighting for an overall diagnosis for Connor, he's the one that's always seen the bigger picture. He's also very supportive of keeping Connor as non-medicalized as possible.
First of all, Connor's actually managed to gain a bit of weight this summer! He's up to 23 pounds now, which I was thrilled about, but when we charted it, it's actually just a touch of a drop (because he's also, you know, gotten older since his last weigh-in! I keep forgetting that...I just focus on seeing the weight go up and forget that he's aging too!!) But he's been healthy since March, not even a sniffly nose, so he's been incredibly ACTIVE. The pulm wasn't concerned about his weight at all, especially since I always buy Connor a muffin at the coffee cart and he was chowing down on this muffin that was nearly the size of his HEAD
He said that he could still hear his malacia, particularly his bronchomalacia, and while he was eating his muffin, he had a significant amount of residue, and his pulse ox lowered just a bit temporarily while he was eating (to 94-95, but about 15 minutes after eating, and after he had a drink, his pulse ox was back up to 99, so we'll keep doing the frequent drinks with meals to help wash the residue down). But he was very happy overall with his progress!
We discussed the upcoming flu season. The pulmonologist of course wants him vaccinated, however he also acknowledges that it's unlikely that Connor would mount much (if any) of an immune response to the vaccine because of his t-cell deficit. And I gave him a MedScape article (I think it was MedScape) that said that early indications are that the regular seasonal flu vaccine isn't a good match to the strains starting to circulate. Between that and the H1N1 that is circulating, it could be an interesting flu season! I won't be vaccinating him…I honestly think that I'd vaccinate him against Pertussis before I'd vaccinate against flu, the vaccine just worries me. Like every year, though, I'll have to decide whether to vaccinate the rest of the family to help protect Connor…but I probably won't do it…I'm pregnant (or will be breastfeeding a newborn), I still think that Ian's immune system is too young for the funky ingredients in that particular vax…so that leaves my husband. I'm going to leave it up to him. He's doing his student teaching semester this fall, so he'll be around a bunch of kids, he might decide to get the vaccine. Or might not…I'll leave it up to him to research and decide.
So we discussed other ways to keep him healthy, and what to do at the first sign of illness. Although he hasn't used his inhaler, percussion, or suction machine in a long time, he told me to make sure to keep them handy all through the fall/winter/spring because he still worries that Connor could be hit very hard by any strain of flu. To our knowledge, he's never had flu, we had a textbook flu bug go through our house this Spring, but both Ian and Connor tested negative (much to the surprise of the drs, they all were positive it was flu, but the test was negative on both boys).
And that was it! We go back in Nov to this dr.
In a few weeks Connor goes to Cincinnati to the Apraxia clinic. I'm looking forward to this appt big time, I've done a ton of research about speech and his syndrome, I've given all the research to his speech therapists and asked their opinions, I've been in contact with the leading experts in his syndrome, etc. I am still lost on what's going on with his speech development. He's making HUGE progress, for him, but he's still so far delayed!!! He's trying hard, we're trying hard, his therapists are trying hard…and progress is happening, but it's just oh-so-slow. Tonight his ASL teacher comes over and we're going to do a new sign count and Ski-Hi Language Development Scale. Using that scale (which takes into account his signs) his expressive was 16-18 months at 23 months old. Using just his verbalizations, he was only at 9-12 months expressive. He's made progress in sign and in verbal, so we'll see where he is now.
He starts pre-school Aug 24th, which makes me very nervous. It's at the special needs school where he's been getting most of his Early Intervention Services, but I've always taken him. Now I have to put him on a bus and he'll be gone 4 days a week!!! We'll see how that all goes. We have his IFSP update next week, and I'm going to put a lot of stipulations in there for school to make sure that he still gets the one-on-one support he needs (particularly with communication).
Connor saw his pulmonologist today, the dr that we absolutey LOVE. He's the one that really encouraged me to keep fighting for an overall diagnosis for Connor, he's the one that's always seen the bigger picture. He's also very supportive of keeping Connor as non-medicalized as possible.
First of all, Connor's actually managed to gain a bit of weight this summer! He's up to 23 pounds now, which I was thrilled about, but when we charted it, it's actually just a touch of a drop (because he's also, you know, gotten older since his last weigh-in! I keep forgetting that...I just focus on seeing the weight go up and forget that he's aging too!!) But he's been healthy since March, not even a sniffly nose, so he's been incredibly ACTIVE. The pulm wasn't concerned about his weight at all, especially since I always buy Connor a muffin at the coffee cart and he was chowing down on this muffin that was nearly the size of his HEAD
He said that he could still hear his malacia, particularly his bronchomalacia, and while he was eating his muffin, he had a significant amount of residue, and his pulse ox lowered just a bit temporarily while he was eating (to 94-95, but about 15 minutes after eating, and after he had a drink, his pulse ox was back up to 99, so we'll keep doing the frequent drinks with meals to help wash the residue down). But he was very happy overall with his progress!
We discussed the upcoming flu season. The pulmonologist of course wants him vaccinated, however he also acknowledges that it's unlikely that Connor would mount much (if any) of an immune response to the vaccine because of his t-cell deficit. And I gave him a MedScape article (I think it was MedScape) that said that early indications are that the regular seasonal flu vaccine isn't a good match to the strains starting to circulate. Between that and the H1N1 that is circulating, it could be an interesting flu season! I won't be vaccinating him…I honestly think that I'd vaccinate him against Pertussis before I'd vaccinate against flu, the vaccine just worries me. Like every year, though, I'll have to decide whether to vaccinate the rest of the family to help protect Connor…but I probably won't do it…I'm pregnant (or will be breastfeeding a newborn), I still think that Ian's immune system is too young for the funky ingredients in that particular vax…so that leaves my husband. I'm going to leave it up to him. He's doing his student teaching semester this fall, so he'll be around a bunch of kids, he might decide to get the vaccine. Or might not…I'll leave it up to him to research and decide.
So we discussed other ways to keep him healthy, and what to do at the first sign of illness. Although he hasn't used his inhaler, percussion, or suction machine in a long time, he told me to make sure to keep them handy all through the fall/winter/spring because he still worries that Connor could be hit very hard by any strain of flu. To our knowledge, he's never had flu, we had a textbook flu bug go through our house this Spring, but both Ian and Connor tested negative (much to the surprise of the drs, they all were positive it was flu, but the test was negative on both boys).
And that was it! We go back in Nov to this dr.
In a few weeks Connor goes to Cincinnati to the Apraxia clinic. I'm looking forward to this appt big time, I've done a ton of research about speech and his syndrome, I've given all the research to his speech therapists and asked their opinions, I've been in contact with the leading experts in his syndrome, etc. I am still lost on what's going on with his speech development. He's making HUGE progress, for him, but he's still so far delayed!!! He's trying hard, we're trying hard, his therapists are trying hard…and progress is happening, but it's just oh-so-slow. Tonight his ASL teacher comes over and we're going to do a new sign count and Ski-Hi Language Development Scale. Using that scale (which takes into account his signs) his expressive was 16-18 months at 23 months old. Using just his verbalizations, he was only at 9-12 months expressive. He's made progress in sign and in verbal, so we'll see where he is now.
He starts pre-school Aug 24th, which makes me very nervous. It's at the special needs school where he's been getting most of his Early Intervention Services, but I've always taken him. Now I have to put him on a bus and he'll be gone 4 days a week!!! We'll see how that all goes. We have his IFSP update next week, and I'm going to put a lot of stipulations in there for school to make sure that he still gets the one-on-one support he needs (particularly with communication).