Tuesday, June 30, 2009

Sedated hearing test results

Our trip to Kansas City was short and sweet. No complications - just the way I like it.

Our family has been having bad luck (though I don't really believe in luck) with vehicles lately. I thought it would be wise to rent a car for the trip and not take any chances! Ralph, Ruby, Chipper and I left Thursday morning to get there in time for his physical and pre-admission testing at 12:45pm.

Ruby was a good girl on the drive up but Ralph had a hard time. He kept signing for a drink and then screeching when he couldn't have another one. Three hours of this.

Funny thing, when the pre-admission testing nurse was trying to pull up his record for the sedated hearing test there seemed to be a duplicate record...dated 6/26/08 and not 2009. Then I remembered. We WERE here exactly one year ago for Ralph's ASD repair! Wow!

We had to be at the same-day surgery department at 7am. I was not feeling well the whole night before. Even when we checked in I was a little shaky. As the receptionist asked me some questions I let out a little sigh and had to hold on to the desk. She gave me a funny look and then I realized that she thought I was aggravated with HER! I quickly apologized and told her that I was just feeling a bit ill.

Chipper came with me this time to help out with the two little ones. It is so good to have an extra pair of hands when you are spending so much time in waiting rooms. He even sang Sunday School and Signing Time songs to try to keep Ralph occupied. The waiting truly is the hardest part.

Ralph is so funny with the docs and nurses. He likes to swipe their stethoscopes, hang them around his own neck and pretend to listen to himself! When the nurses finally arrived to take him to the procedure room he proceeded to swipe the paper head covering off of one of them...three times! We said our so-longs in the hallway and went downstairs to the waiting room.

I nursed Ruby and Chipper got some snacks while we waited. The waiting room was pretty packed. Not too long after we sat down a code-blue was announced over the P.A. You could just feel all the air being sucked out of the room. The code was for another area so I was certain it was not Ralph. All the same, I was forced to consider what I would do if it were him. The code announcement was repeated a minute later and then an announcement for a certain family to return to their child's room.

Then I saw them through the window. Walking very quickly down the hall. Dad in front with mom in tears and trying to catch up with him. My heart sank.

Ralph's procedure took too long. I was starting to worry. We waited for two hours before the audiologist came to speak to us. We had the opportunity to review all the results right away. How nice! Here is the deal...Ralph most likely has a mild permanent hearing loss. He definitely had a conductive hearing loss on the day of the test.

A conductive hearing loss can be caused by fluid in the ears. He has never had an ear infection so this surprised me. Also, the fluid in the ears can throw off the results of the whole test. So...we are really back to square one.

Tomorrow Ralph goes to his new family doc. I hope that he can get a good look at his ears and see if there is any infection. We will go back to Kansas City next month to see and ENT and the audiologist. Perhaps he needs tubes in his ears? I opted to go back to KC because the ENT and speech and hearing clinic work together. It is worth it to have some continuity and familiarity.

A side note...Ralph came out of the procedure with a scrape on his forehead from one of the probes that were used. Now, four days later, he has a nasty, dime sized scab on his head. I bet it leaves a scar. Why? Have any of you DS moms experienced this?

Monday, June 22, 2009


Here I am. It's nearly midnight. As soon as I give Ralph his medicine I'll be off to bed.

I spent the whole day trying to keep Ruby happy. It's so hard to tell if she is hungry or has a tummy ache. I've got a ton of paperwork that needs to get done, but it's impossible with a baby in my arms. All. Day. Long.

June is nearly done. It's slipping away fast! I have July birthdays sneaking up on me. My oldest sons will both be 17 for eight days. Then my oldest minor will become a major! I must think of the most wonderful, unexpected, affordable birthday gift. *sigh* I meant to make something. For Christmas, for sure. Why can't I get anything done on time?

Anyone heard of Manager's of their Homes? I heard the Maxwell's speak at a home school convention many years ago and picked up several of their books. (All of their books are great but I HIGHLY recommend their "Preparing Sons" book.) Their theory is that a prayerfully designed schedule for each member of the family will make life easier and more productive. And, THEN if things are not getting done, perhaps you are doing things that God does not want you to be doing right now. Ouch!

Confession: I'm a time slob. I'm not naturally bent toward time management. And it shows. I've gotten away with it for a long time simply because I had so many little typically developing (gifted even!) kids. My hubby is extremely relaxed about it and I get a pass from just about everyone else, too. Just the fact that I'm still writing this when I should be in bed proves the point.

So I'm working on creating more structure in my household. Ralph needs it. Everyone will be better off. I'm sure they will be so much more secure know what to expect and when to expect it, what to do and when to do it, what to put away and where to put it, and so on.

I'll be sharing my progress, or lack thereof. If only Ruby would cooperate. If I could only find that MOTH book...

Wednesday, June 17, 2009

Ralph on the Range

Ralph at the shooting range with daddy.

He was very content to leave the earplugs in.

Doctor stuff

I'm switching doctors for Ralph. Ruby, too.

The part of me that HATES confrontation and the part of me that can't stand to hurt someones feelings is a bit annoyed. It's not that I'm unhappy with their pediatrician. I'm not. I love her! But, we never get to see her.

Ralph needs a physical and history for his sedated hearing test next week. She's completely booked until September! Wha? I'm tired of seeing her PA or one of the other docs in the office. I didn't interview and choose them - I interviewed and chose her.

So, I've been thinking about switching doctors for awhile. I LOVE our family doc and I trust him. We decided to go with a pediatrician for Ralph after he was sprung from the NICU and was quite fragile medically. Now he's more stable. Lord please let it continue to be so! And I need this physical done in the next two weeks!

So, I called this morning to have his records sent over to the new office not really knowing what would be involved. Apparently, I just have to sign a form and everything is sent electronically. So. I called the new doc to make an appointment. Ha! Tomorrow at 9:40.

Oops! Not!

I just got a call. It seems that Ralph's records are extensive (umm...no kidding!). There is massive photocopying involved. It will take a week.

OMG I just got another call...this is killing me! The pediatrician's nurse just called to tell me that Ralph needs a physical for his hearing test next week. NO DUH! She offered to make an appointment. I explained to her that the appointment desk said there were no appointments until September. She offered to get me in to see one of the other docs. *sigh*

"That's really not what I want", I said. I explained to her that I am making arrangements to change doctors. There was an awkward change of tone as we said our goodbyes. Irritation? Too bad. He's my son and I still get to decide who he sees.

Oh, funny. I just got a call! It was the hospital where Ralph is having his hearing test. The lady there knew I was having a hard time getting his physical scheduled. So she made an appointment for a physical for Ralph at the hospital clinic on the afternoon before his test. Uggh! I know she worked hard to get us this appointment, maybe even pulled some strings. What do I do now?

I guess I do this to myself. I started the ball rolling to change docs because I want him seen by someone that I know. Now I'm stuck with gratefully accepting a hard-won appointment with a doc that I don't know. Should I cancel the appointment with Ralph's new doc or what?

Sunday, June 14, 2009

Will he ever?

Ralph is so sharp. I mean smart as a whip! He knows all the baby signs on the three Signing Time DVD's that we have borrowed. I got a smokin' hot deal on four new ST DVD's thanks to my friend Rita from Reece's Rainbow.

Wow! It is so fun to watch him experience something new. I can't capture it in a photo and that drives me nuts. He is actively listening and watching Rachel and imitating the signs. If you have never seen or heard of Signing Time you MUST check it out!

Funny...Ralph just crawled over to see me. When he noticed Rachel's picture here on the screen he started vocalizing "da! da!" which is really his only vocalization. *sigh* He also started signing "time." This is his way of asking to watch Signing Time! Cool, huh?

It's great that a non-verbal kiddo can communicate with others. It can be difficult sometimes, but I'm grateful that we are not ALWAYS dealing with screaming and grunting. The purposeful signing always amazes me and warms my heart.

But...will he ever speak? Will he ever say mama?

Next week is Ralph's sedated hearing test. Even a mild hearing loss can affect speech. I guess I'll know more soon.

Friday, June 12, 2009


Thomas and Jordan are great friends. They are just a bit less than two years apart. They even have identical shorts on!

Thursday, June 11, 2009

I'm back! They're here!

I'm back. Summer vacation is...well...you'd think things would be running smoothly around here since I have so many helpers around. But things have not been running smoothly.

I'll be consulting my Manager's of their Homes book. More on that later.
At last! They are here! The SureSteps!!!

Pretty, expensive. Pretty expensive. LOL

Ralph's not too impressed. He enjoys putting them on and tries to do it himself. But...he doesn't want to walk in them much. Yet.

I'm reserving my judgement on these pricely little plastic doo-dads. I can certainly see an improvement in position. I see Ralph bending his knees more...sort of marching like a baby that is learning to walk.

Video soon.

Wednesday, June 3, 2009

Special Exposure Wednesday

5 Minutes for Special Needs

Holding up the line at the pirate ship slide...that's my boy!!!

Tuesday, June 2, 2009

Summer food

I hate cooking in the summer time. Sandwiches get old FAST, but I don't like to heat up the house by using the oven. So...I'm always on the lookout for things that the kids will eat that are easy and COOL.

Here's one brand new favorite around here. I use a big can of fruit cocktail, a regular can of pineapple tidbits, little can of mandarin oranges, sliced banana, and a big box of instant vanilla pudding. Just dump it all together and mix...how easy!

If you are cheap like me or you just think it is too sweet you can add some plain cooked rice or pasta bits. I add quite a bit of cooked rice to make this last more than 10 minutes. I add some little marshmallows just for fun.

How about you? What are your favorite cool, kid-friendly summer dishes?

Imagine this scene.

My mom's group met at the zoo this morning. We drive to the zoo in the old suburban, since my van is in the shop. Ruby, who hates to ride in her car seat, screams the whole time. I cannot open the tailgate to get the stroller out. I tug and pull. She screams.

I give up. We go home. :(

Monday, June 1, 2009

My gut.

My gut tells me things on occasion. On occasion I listen.

Ralph has a sedated hearing test scheduled for next Monday at a local hospital. I called a few months ago...they gave me a date and time to be there...no big deal. He has never passed a hearing test, so this is really long overdue.

My gut told me that something was not right. Couldn't put my finger on it. Maybe it was that I had concerns about the sedation drugs that would be used. I was given the phone number to the sedation department at the hospital...no answer.

When I took Ralph to Kansas City for the DS clinic in May I had a bright idea. Why don't I take him to Children's Mercy for the test? The audiologist at the clinic even assumed that I would have the test done there. But, it's not the most convenient place, so I filed the thought away.

Ralph's EI teacher was over this morning and we discussed the hearing test and his speech development. I've always said that one I my wishes for him is clear intelligible speech. I know that won't happen without clear hearing. She encouraged me to look into the possibility of having the test done in Kansas City.

Later this morning I called the audiologist from the clinic. She was so helpful and kind! She explained that his test would need to be done in a procedure room due to his medical history. Reeeeeally? After being transferred to the appointment desk I was educated even more.

I was asked a whole host of questions about his medications and medical history. I was instructed to have a physical exam done and faxed to them in the next couple of weeks. I was also asked to bring him up for pre-op testing sometime in the next couple of weeks. Wow, long drive for that!

Well, the test is scheduled for the end of this month! I talked them into doing the pre-op stuff the day before so I don't have to make two trips. This feels so right. I'm so relieved.

Why didn't my local hospital ask me anything about Ralph when I called to make an appointment here? No questions about medical history, allergies, medications, nothing. Do they care that he is sensitive to a certain common sedative and that one time it made his heart stop? Uggh!!!

My heart can barely take this sometimes. It's not like we live in a dinky, remote little town. We have several large hospitals here. Why do I feel lucky to get in and out of these places alive and well? Sorry, I have a very bad attitude when it comes to medical stuff. It is just a good thing that I still have the freedom to ask questions and shop around for the best care for my son. Can I get an amen?

I'm glad that I listened to my gut today.