Wednesday, April 29, 2009

In Indiana....

Quick update to let you all know that I am in Indiana with Adalynn. My dad had a heart attack last week and after a routine heart cath for stints, there have been some complications. He is currently sedated and on a ventilator and will be until at least Friday. I will update with more information later, but I am asking for prayers for everyone right now. Obvioiusly for my dad, for all of us kids (I have 3 siblings), for his girlfriend (who is also very sick), for John's dad (who is also still having heart complications), and for John (who is at home with the boys). And did I forget?????....Adalynn (who has been a very patient girl who has been at the hospital with Papa Hair Face everyday since Saturday, up to 10 hours a day! Crazy!!!

Thanks and may God bless you all!

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!

Sunday, April 5, 2009

Las Vegas Recap

Wow! We have been back a week already and I am just now getting a free moment to post. It has been a busy week!!!!

We got back late Saturday night after a very long day of flying and layovers but boy did we have fun. John had an AAG conference and had to go to several presentations. He even had to present, but I enjoyed the uninterrupted homework time while we was gone. Statistics is really kicking my butt! We really didn't gamble, unless you count losing $20 in slots, but we spent some time in the casino-just to say we did. We had an amazing hotel room at the MGM Signature! It is attached to the MGM Grand which has 5,044 rooms in four 30-story towers. The Signature only has about 1700 rooms (576 in each of its 3 towers). We were in a non-gaming and non-smoking hotel which we loved!

Just being in Vegas was an experience in and of itself. It was weird being alone with my husband...walking at the pace we wanted to without carrying or pushing a kid in a stroller....eating what and when we wanted to....sleeping ALL night long....It was terrific and I really think we really needed it! We didn't have a lot of time since it was a short trip, but we did make it to a Cirque show, ate at Emeril's, went to the 4-story M&M's store, and watched the fountain outside of the Bellagio. Before we knew it, it was time to come home.

the lion outside of the MGM. To give you an idea of how massive this lion is--100,000-pounds, 45-feet-tall and perched atop a 25-foot pedestal---everything is Vegas is HUGE!

our "penthouse junior suite" at the MGM Signature...complete with a TV in the bathroom!

the view from our balcony during the day

and the view at night. Amazing, huh?

staying at the MGM had its perks...including being able to see lions (and they weren't sleeping)

the fountain outside of the Bellagio Hotel

outside the Bellagio waiting for the fountain show to begin

4-story M&M's store

the wall of M&M's was impressive-and here you are only seeing about half!

me taking a break...we had to stop at CVS to get blister bandages, and even then I ended up still buying new shoes. Who knew that we would be walking as much as we did? When we calculated it, it was almost 6/10 of a mile just to get from our room to the outside (on the strip side). Once we added everything together, we logged almost 25 miles over the course of 2 days.

Paris Las Vegas

the strip at night from the walkway between the MGM and New York, New York

us before dinner at Emeril's...notice John politely covering up my broken finger :)

another of just us....both of these were taken in our hotel room with the camera on automatic.

My mom had fun with the kids while we were gone and didn't spoil them too badly! Broderick ended up getting sick and she had to take him to the doctor (thank goodness for the permission to seek medical attention I left her). He had another ear infection-I think that is #3 or 4 over the past few months. Will he ever grow out of it? Both he and Adalynn have ENT appointments this week. I am anxious to see what they decide to do.

excited for mommy and daddy to be home

the best in our attempt to get a picture of the three kids with Mamaw. Camden bumped his head right before this and Adalynn did not want to get her picture taken. Oh well, at least I got individual's with her---mom, I am mailing those to you :)

On Sunday night when we got home we had a horrible storm---lots of hail, lots of wind, lots of lightning, and lots of praying :) Broderick flipped out!!! He was scared to death. There was some rotation in the clouds and John (being the meteorologist/climatologist that he is) knew that we were close to having a tornado. At one point as John and I are trying to explain to Broderick that we will be fine and that we have a basement to go down to, he told us to "be quiet" so he could pray. I have never seen him so scared. It brought tears to my eyes as I listened to him plead to God to not let the tornado hit our house.

I was also supposed to get all four of my wisdom teeth pulled on Tuesday of this week, but Adalynn woke up running a fever. I wasn't sad to have to call and cancel it. Believe me!!! Especially since John was not going to be able to stay at home with me and help after the surgery. I have rescheduled it for May when John can be home. Yes, I know....and my dentist already let me know....this would have been a lot easier when I was 17. Too bad no one told me this earlier. Please let me know what your experience was like...I really want to be prepared!

Camden had kindergarten registration this week as well. I can not believe my baby boy is going to be in kindergarten. He was nervous, but warmed up quickly and did great with the registration process. He only missed the letter V and the number 9. Other than that, he did awesome. Now, we just have to wait and see if he gets AM or PM kindergarten.

The boys also had their first soccer practices/games today. I will post pictures of that sometime soon. We got some great shots.

Thanks for checking on us!