Tuesday, April 14, 2009

Update and Need Advice...

Life never seems to slow down! I know I should enjoy it, and I do treasure every minute-but at the same time, I really wish I had more time to sit and rest, to read (something other than statistics-blah), to update the blog and to check on all of our online friends--I've "missed" you.

But the thing is, 3 kids means busy days and at times busier nights!

Soccer was a blast and the boys did great. From Camden's actions, you wouldn't believe this was his first time. He was right up with the ball the entire time. It was so different than Broderick's first time. But, now that Broderick has been playing for the past 3 years, he is getting good. He was so excited to find that there are goalies in his age group. He was even more excited that his teacher came to watch him. She is great! Broderick's game was at 12 and Camden's was at 3...so this was our first (and definitely not last) day of all day soccer! We had fun! Too bad it was cold, but at least it was sunny! Great photo lighting!!!

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We enjoyed celebrating the Easter holiday this weekend. Broderick even had a mini-spring break (Thursday, Friday, Monday off). The Easter festivities started with a flashlight Easter egg hunt with the Cub Scouts. It was soooo cold and it even snowed a bit that morning. (I remember this clearly as the kids and I spent part of the morning outside waiting for the fire fighters to tell us there was no carbon monoxide in our house...just a faulty detector that scared me to death).

flashlight Easter Egg Hunt with the boy scouts (it was FREEZING)!!

As most of you know, Broderick was baptized last summer, so he now "really" gets Easter. It is pretty awesome. Even when shopping for Easter outfits, he wanted to choose a red shirt "for Jesus' blood" he said. We compromised with a shirt that had a red (pinkinsh) stripe. He was okay with that. The boys loved their pre-Easter gift of a Wii from us and all of the Wii games and goodies that the Easter bunny brought Easter morning. Although we still haven't found a new church, we did make it to service Sunday morning at the church where my MOPS meetings are held and then to an egg hunt in our community (with REAL hard boiled eggs).


Other things that have gone one this week...

SPEECH THERAPY: Adalynn's therapist has been coming once every 3 months, but because she is testing above her age as far as her speech development, she is considering discontinuing service. Believe me, I am beyond excited that Adalynn is talking so much and so well. It just scares me to stop services. What do I do? It is only once every 3 months, so she really isn't doing anything with her except monitoring her. I just have this overwhelming fear that if we discontinue services, she will develop a delay. I think I have in mind "she had a cleft palate, she is SUPPOSED to have speech issues" but since she doesn't, I am confused. The therapist, doesn't mind continuing to come (and I'm leaning that way) but need your advice!

ENT: Adalynn and Broderick both had recheck's on their ears this week. Both failed their hearing tests, again! Broderick's hearing continues to decline and his tubes are gone (his second set that were put in July 2007). He is now scheduled to have his 3rd set put in on May 7. Adalynn continues to fail in her left ear, despite the tubes still being and appearing to function correctly. The ENT scheduled her for a more extensive BAER test (a hearing test known as the brainstem auditory evoked response). I called the hospital to get detailed instructions about this procedure since the what the doctor's office told us pertained to infant testing (ie. bring her in her car seat, sleepy, but not asleep, hungry-but bring a bottle so she will eat and sleep during the test---definitely not instructions for a nearly 2 year-old). The person I spoke with said they will NOT be doing the BAER, but instead some other testing so I am to ignore the instructions. Her appointment is on May 18. All of this is a little overwhelming. I hate that Broderick is having so many problems with his ears, but I am grateful that his academics aren't suffering because of it. And I hate that Adalynn's left ear isn't functioning how it is supposed to, but at the same time I am grateful that it really doesn't seem to be affecting her. But I wonder, if the doctor requested the BAER, shouldn't the hospital do that test? Anyone else heard of this test?

TEAM VISIT: And now for the BIG question....What do we do about finding a new cleft team? We've been in PA for 8 months and still haven't found (or even visited) a new cranio facial team. We had an appointment at CHOP (Children's Hospital of Philadelphia), but it had to be canceled. It was only an appointment with a plastic surgeon and not "a team"-although they do have a team. I have since contacted the team in our area twice, which is operated by Easter Seals, and still have not gotten a response. We have done (a little) research on Children's Hospital in Boston. UGH!! What do I do? I feel like a horrible mom for just ignoring this for so long. It has been almost a year since she has seen anybody concerning her cleft lip and palate. We are taking her to an ENT and a dentist in our area, but feel like someone who specializes in issues such as hers would be so much more beneficial. And some of my speech concerns could be addressed and we would be able to have a professional opinion as to whether to continue speech services she is already getting. I feel like I have ignored her cleft care since we have moved. I know many of you have said that once you get through the first year, it is a breeze and it has been....but I don't know if that is because I haven't done anything concerning her cleft lip and palate.

So the questions are...CHOP, Local Team, or Boston? Speech or no speech? BAER test or no? Have I completely ignored it, or is it okay since she has been getting dental care, meeting with an ENT, and evaluated by a speech pathologist? Would team visits be easier? What about her next surgery?

What do I do? Any insight? And advice?

and I leave you with a picture of Adalynn enjoying a blue peep sporting knee high socks, a turtleneck, and diaper (all of which are white). Too cute!


  1. Have you looked into Hershey Medical Center for Adalynn?? I know I mentioned that once before.

    Looks like you guys had a great Easter! :)

  2. The soccer pictures all turned out great!!! You were right - good lighting! Seems like the chilly days are the best.

    I don't really have any advice for you, since we're not at that point yet. I guess my inclination is that since she's doing so well with speech (and I think discontinuing services is GREAT - maybe she's just the brilliant exception!), then you haven't missed much for a cleft team to even review. I guess physically it might be good for someone to check her cleft out to see if everything's as it should be. But I wouldn't beat yourself up about not having done it sooner. Too much guilt in a Mommy's life already! I'm always the type who goes with the doctor who actually calls back, so if you haven't gotten a response, move on and find somewhere else.

    And I'm so sorry about all the ear troubles!! Why did they end up saying not to the BAER test? Seems like maybe she should have that one, but the way that want Adalynn (sleepy, hungry, etc.) is kind of ridiculous... so I'm not sure how you'd manage.

    Anyway, I'm not much help... but I'm glad you all had a great Easter! Love the buckets on the mantle - too cute. And the white knee high socks have to be my FAVORITE!!!

  3. Hey Shannon! Can you believe it's tax day and I'm commenting on your blog?!?! I'm actually caught up at the moment (and hope today continues this way!!).

    Anyway, that is great about Adalynn's speech! Drew is still having problems w/most sounds so he is having speech therapy twice a week. I think stopping would be fine b/c I am sure that you will be able to notice if she starts developing problems and then you could always start again if she needed it.

    As for the cleft team, is Boston where that one doc is that people that aren't even from Boston travel to see? Like the Flynn's?

  4. Love all the pictures! Especially the sweet b&w one above your mantle! I don't have much advice, as I'm not quite there yet, but you know we're going to Boston for Riley. I've heard nothing but great things about their team. I have Dr Mulliken's email if you want it. Just let me know. I'll be posting soon with pictures of Riley!!