When you have a child with a speech and language issue, they have their own way of communicating...their own way of pronouncing sounds...their own way of speaking...and you become very proficient in this new language. This blog is all about "THEIR words, THEIR way"...simple as that.
On her due date, for that matter.
All 6 lbs 8 oz of her.
With the biggest hazel eyes and eyelashes to die for!
My special girl.
With Childhood Apraxia of Speech.
Some cognitive delays.
Throw in some Sensory Issues here and there.
My little buddy.
The hardest worker you will ever meet.
A little lover and hugger.
And the sweetest girl you will EVER know.
My second born.
My little man.
Well, I don't think he was ever that little.
All 7 lbs 12 oz of him.
Born 2 two weeks early because he wanted to arrive early.
So he made me pre-eclamptic.
Oh, so sick.
But all is good now.
He has some special needs of his own.
Guess he didn't want to be "different" than his big sister.
So he chose to get my attention.
He chose to have ear infections.
A total of nine in all, over a six-month period.
Throw in a little hearing loss, which he has since regained.
And is now about 9-12 months delayed in speech.
He is my little man.
A little lover.
With a little temper to match.
He's my boy!
Well, we had our IFSP Meeting today for Andrew. In attendance were the EI Coordinator, the SLP Evaluator, and the DT Evaluator. Of course, I was there, too. And so was Andrew, although he was busy eating and watching a Baby Einstein video.
As I assumed, Andrew DID qualify for EI services as he does have a >30% delay in expressive speech. This, of course, is due to the chronic ear infections that he suffered from for the last 6 months. Now that tubes are in, he is babbling and imitating so much more. I don't think we will be in the EI program all that long, but it is nice to know that things are moving along.
So, it looks as though we will be starting speech therapy with Andrew in the next couple of weeks. It is a huge BONUS that the SLP that is treating big sis Kaitlyn will also be treating Andrew. WHEW! He likes her, so that is a plus. He will only be seen once a week for about one hour, but that should be enough for him (and his tolerance). We don't call Andrew "The Boss" just for the heck of it!
So, all in all, the state of Illinois is a pretty good place to be (if you can overlook the Blago political scandal as of late....). Let's see where this ride is going to take us..........
and thought that Andrew had something brewing in his ears. For the last few nights, he has been waking up and crying (typical symptom of an ear infection for him), crying for no reason (like any man needs one?), and was V-E-R-Y clingy. No fever, no drainage. So, I called the surgeon and they said that the pediatrician needed to follow the infections as they would only follow a dysfunctional tube. HMMM? What if it's dysfunctional? How do we know it's not dysfunctional? Does that mean I have to go to the pediatrician who will then tell me to go back to the surgeon? I can picture the hamster in the wheel already!
So we sat. And sat. And sat at the office this morning, waiting oh-so-patiently for the doc to give me the news: EARS ARE CLEAR! Hee-haw! (Um, did I just say that? How embarrassing!) Looks like the little man is going to be following in Daddy's and big sister's footsteps with allergies.
After 6 months of spotting an ear infection in the making, I now need to learn what an ear infection presents like in a child with tubes. I need to Google this one for sure! Maybe with a glass of wine.
For now, we are in the clear; 11 days and counting................
Within a matter of days of Andrew's tubes being placed by the ever-so-talented-God-like Dr. Hotaling 9 days ago, Andrew is a new man (um, baby boy!). His balance is amazing, and he picks up on the slightest sounds. But the most amazing thing is the variety of sounds and WORDS that are spilling from that precious little mouth of his! We are going from "ugh!" and "daaa" to "Go-Go" (for Galileo) and "Ga-ger" (for tiger). Yes, my son is adding complex words to his word bank! LOVE IT, LOVE IT, LOVE IT!!!! I was told that his language would take off, but this is amazing!
Andrew also had his final evaluation for Early Intervention from the Developmental Therapist. She said that he is in the 24+ month age range for everything with the exception of expressive speech. This, we know. She placed him at the 13 month age range for expressive language and is highly recommending speech therapy for him, too. We will be having our IFSP Meeting on Monday, April 27th to determine eligibility, but I am assuming that it is a go.
So, in the meantime, I will continue to talk with him and have him imitate sounds and words.
So, today we had our Transition Meeting for Kaitlyn prior to entering Kindergarten. It actually went well, lasting only 50 minutes as compared to the Jan 2009 meeting which lasted 3 1/2 hours. Mark and I were pleased with what the PACE Program had to offer Kaitlyn in light of the deficits she has at the present time. This program allows for HUGE progress and is set in an environment that I am sure Kaitlyn will flourish in.
However, I have one (make that two) gripes. First, her current classroom teacher is 100% phony. So transparent you can read right through her. Flip-flops all the time. Granted, my daughter has some cognitive issues, but she is NOT an idiot! Hear that???? NOT AN IDIOT! The teacher actually had the balls to complain that my daughter was not using the correct word the she wanted her to use. The example she gave was this: "Kaitlyn will bring her Ziplock bag with her snack in it and instead of saying 'I have this" she says 'I want this'. So? And your point is.....what? The fact that she is even saying that is HUGE for her! Six months ago (and maybe even less than that) she wasn't doing that. That is progress! And that is all you have to complain about? If you ask me, it seems like someone is grasping here!
Secondly, the SLP. In this case the "S" in SLP stands for "snake"! Back in our January 2009 IEP Meeting (in a previous blog entry titled "A Few Words About IEPs"), I fought this exact SLP (and won) for additional minutes, climbing from 90 to 120 per week. Today, this girl has the nerve to say that she is "recommending 90 minutes per week". Wait, let me get this straight....you are recommending 90 minutes per week, even though Kaitlyn is going from a 2 1/2 hour program five days per week to an all-day Kindergarten program five days per week? Didn't you just say that Kaitlyn was doing so well and that it was exciting to see the progress she is making and that her best performance is on a one-to-one basis? Are you nuts? Really, because if you don't have a certifiable diagnosis, I can refer you to a great physician! I could feel my blood start to percolate and, with one deep breath, all but launched myself across the table at her jugular vein. And once again, she does not have the data to support her statement! So, after a ten minute litany by me, I got the 120 minutes back that Kaitlyn so rightly deserves!
Why do they have to fight me? Don't they know who MaMa Bear is by now?
Nope! Not anymore! Please take note of the large tear under his right eye. Very nice. Adds a bit of emotion to the current drama taking place in the tub, doesn't it?
So we tried just using the Pro-Plug earplugs that were given to us by our audiologist. Needless to say, this nervous-nelly of a mother didn't think that they were going to provide to optimal amount of water resistance to my fidgety son's ears. So this is the headband that I got from the ENT's office. It's almost a shade of blue, so it will do. It is reversible, so Andrew can wear black when he is in a "mood".
This little guy used to love to take a bath. We nicknamed him "Hurricane Andrew" (not to offend any of my Florida followers...I know that is a sore spot with you!) since the water that was intended to stay IN the tub seemed to find its way OUT of the tub with Tsunami-like force! Hence, the nickname. But since we introduced the ear plugs, it is nothing but drama and tears. I wonder if I could conserve water this way and let him bathe in tear-water next time? HMMM? Gotta give that one some thought........
I thought that if we combined the plugs AND the headband, we would be safer. Much to my amazement, it worked! Yes, there were plenty of tears when those awful plugs went in, but as soon as the headband went on, the tears stopped! Another HMMMM. Maybe this headband is giving him a different sense of security and he isn't feeling those plugs in his ears. Crying stopped. And he actually seemed to enjoy himself a bit again.
I might be on to something. Splash away, Hurricane Andrew!
So this morning, Andrew and I drive over to the ENT's office to pick up a head band that he can wear in the tub or pool (in addition to the ear plugs) to prevent water from entering his delicate ears. I also brought along a dozen Dunkin Donuts for the wonderful office staff that had to deal with me and my tears for 11 days prior to the surgery.
Got an impromtu post-op check out of the visit!
Andrew's ears look great! Tube placement looked great, and the doc said that he looked good. Asked a bunch of questions (Have you noticed any changes in him since surgery? Sound sensitivity? Balance issues? New speech sounds?). Andrew has become so acustomed to people poking and prodding his ears that he just sits there and no longer fights. So, that meant that I (yes, me!) got to look in his ears, too! Yes, the surgeon held the otoscope in place and I was able to take a peak at the little Cherrio-like object that will hopefully be the answer to all of our ear infection problems. How cool is that? Yeah, this doctor rocks!
Went back for an impromtu OAE and tympanogram, too. Beautiful results! Need to come back in eight weeks for another post-op hearing exam (OAE, Booth and tympanogram). The doc said that he is not worried about anything right now and wanted to make sure that I was fine with everything. You really have got to appreciate a surgeon who takes care of the Mom as much as he is taking care of the child. Then he sent us away with these orders: "Go and let him splash and play in the water. Don't worry if some water gets in the ears. If they get infected, we will just treat it. He's at that age where he wants to splash!"
Surgery went well. Andrew was a champ. Mom, on the other hand, was a mess! I was fine until the surgeon walked in. Then I cried. Before you knew it, it was 755am and they took him away to the surgical suite. What a feeling of helplessness I had at that point. My son's life (and vital signs) were in the hands of the surgeon and anesthesiologist.
I awoke at 3:15am. After showering and trying hard to wake up, I woke up Andrew at 4:55am. We needed to leave at 5:00am for the 20+ mile drive, so I thought that a quick diaper change and he should stay asleep in the car. Wrong. He was awake now. Quiet, but awake.
We stopped at Dunkin Donuts for some much needed coffee for the ride in. I really felt bad drinking in front of him knowing full well that he could not have anything to eat or drink. However, me without coffee is NOT a good combination. I tried to disguise my coffee consumption in the front seat as much as I could.
After about 15 minutes in the car, Andrew made a peep. I think he realized "Um, where are we going at this horrible time of the morning and why am I the last to know???" A Baby Galileo video by Baby Einstein quieted him down.
We arrived at the hospital at 6:00am and went to check in. By this time, Andrew is fully awake and is now getting mad. He wants something to eat or drink, and he wants it now! He tries to rummage through my purse and doesn't find anything to his liking. Then, he spots the diaper bag. You know, the one that has EVERYTHING imaginable in it! Obviously, he doesn't understand reason at this young age because nothing I said or did made him happy. He was pissed that he couldn't have what was in the bag.
At 7:00am, we were called back into the pre-op area. Once in a room, the nurse asked more questions and we dressed the little guy in a gown. Didn't know they made 'em that small! Anesthesia came in...more questions/answers/risks explained. Resident came in...ditto. ANother nurse came in and gave Andrew an oral sedative to *relax* him. I shouldn't laugh, but the kid looked drunk. By this time, there were two surgical RNs there, waiting for our surgeon to come in so they could take him in. By this time, Andrew was done being afraid of everyone or crying at the mere thought of someone touching him. He was like the WalMart greeter. "HI!, "HI!", "HI!" to anyone and everyone that would listen. It was nice to know that he was now comfortable with the staff, even though he was under the influence of the drug that I needed so badly at that time. I did ask, and they laughed. Little did they know I was serious!
The surgeon came in. I cried. Poor guy had to hug and console me, ignoring the littlest patient in the room. I gave Andrew at least 12 more kisses, and told him that I loved him so much and that this is going to help those nasty *bugs* in his ears. I refused to say "Good Bye" because to me, good bye means forever and I was going to see him again very soon. Off they went. My heart sank to the floor.
At 815am, they called us back so the surgeon could talk with us. WOW! Less than 20 minutes! Then, we were taken down the hall to the Recovery Room where I immediately heard that wonderful sound: my son's cry! We sat in recovery for a while as he fought off the effects of the anesthesia. After finally drinking some apple juice and soothing himself on my fuzzy jacket that I was wearing (not to mention his one of MANY pacifiers that we brought), we were allowed to go home. It was 9:00am.
The ride home was quiet. We were told that he might be sound sensitive for awhile, so the DVD that was playing was on low volume. Once home, he started looking for food. Poor guy was starving! He ate some oyster crackers and more apple juice, then moved onto lemonade. By 1130am, I could tell he was beat. I made him some bland oatmeal with applesauce and he devoured that! More apple juice and a couple of bites of real apple and he was done. Upstairs we went for a last diaper change and some Tylenol...just in case he was in any discomfort. Within 5 minutes of lying down, he was asleep.
Rest, my little man. You've had one hell of a day!
and, yes, I am scared. I hope that all goes well and we don't have any problems with anesthesia or the like. I have faith in the surgeon. I just need to put this in God's hands that Andrew will be taken care of.
Just got a call from the Surgical Scheduling Center and Andrew's ear tube surgery is set for Monday, April 13th at 8:00am. We have to be there at 6:00am for paperwork and so on. UGH! That means waking up at 3:00am to get ready, eat, and get the little guy up and ready to leave by 5:00am.
Hopefully, this procedure will finally put and end to the countless ear infections (by the way, I took him to the pediatrician this morning and he has another bilateral infection!), impairment of hearing, and lack of expressive language.
Wish us luck and say an extra prayer that all goes well. I will update again on Monday after we get home.
In the meantime, have a wonderful weekend and a blessed Easter Holiday!
Just when I thought that our path down the road of Early Intervention was behind us, it looks like I need to get the trusty road map out once again. Because of the chronic ear infections that have decided the aggravate both my son and myself, it has become imperative that tubes be placed in his ears. Because of the chronic infections and fluid, he has some problems with his hearing. Because of the hearing problems, he has a speech delay. Because of the speech delay, we are opening a new case within the state of Illinois Department of Early Intervention. *sigh*
So, phone calls have been made today to EI and now I sit and wait for a Service Coordinator to call me. Then it's back to intake meetings, interviews, evaluations, assessments, reports, and those oh-so-fun IFSP Meetings!
On a positive note, I did speak with our primary SLP for Kaitlyn and she is EI Certified! YIPPEE! At least she is our bright spot in this mess. It would be so nice if we could get her on board since Andrew knows her and would be willing to work with her.
Well, our ENT appointment has come and gone and I have good news and bad news. The good news is: Kaitlyn has BEAUTIFUL hearing abilities. If you recall, she has been complaining of a "beeping" in her right ear for about one week. After a trip to the pediatrician and a new round of antibiotics and decongestants, her ear infection and fluid issues have resolved. She had a variety of hearing exams done and was a champ! Her OAE's (Otoacoustic emmissions) were normal as was her tympanogram. They even did some sort of behavioral testing with dropping objects into a bucket when she heard a specific sound and excelled!
The bad news: our little guy, Andrew, is in dire need of tubes in his ears due to eight ear infections within a 5 month period. This is going to take place on Monday, April 13th. He didn't do so well on his hearing tests, indicative of some sort of problem related to the multitude of infections. I don't know who cried more, him or me! I knew that this was a possibility (OK, a probability!) but I didn't think it would happen so soon. Deep breath............
So we will just have to add tubes to our list of things to do!