As we head into the month of April, my friends and I are back into "What about next year?" mode. This time last year, the discussion was about our 5 year olds. Jon couldn't believe how much I could talk about where to send Brynn for kindergarten, and it astounded me how many friends I could have this conversations with! Local friends and ones far away, in both TN and FL, were going through the same process. What was best for our 5 year olds?
For us, our choices were half day Kindergarten at public school, full day K at our only Christian private school (CWCS), or homeschool. We live in an area where homeschooling is very popular, and so there is a huge community of families for support and friends for Brynn. Then again, everything I've ever heard about CWCS has been positive, even the fact that the K teacher isn't a 'normal' K teacher. The kids sit at desks all day, with no circle time or stations. But, the teacher has all the kids reading at a 1st grade level, and many much higher.
Would Brynn do OK sitting at a desk all day? Would he be OK at home with no friends around all day? Both Jon and I felt strongly that public school wasn't the route for Brynn.
By the middle of April, or close to that time, we had decided to homeshool Brynn. I started the search for homeschool curriculum and bought everything that I'd need to homeschool him for K. We were set and Brynn was excited about staying home.
And then we started to realise how serious Iann's needs were. How often we would be having therapists in the house. How often I would driving Iann to therapy. Brynn is such a social creature that he wants to 'help' Iann's therapist. In other words, he wants to play with the toys they bring! Was having Brynn home the best for Iann? And, was me putting Brynn in front of the TV when therapists come over best for Brynn?
So, I filled in an application for CWCS, we had our interview, where we explained that we were applying late because of Iann's increasing needs, he was accepted, and put on the wait list. The wait was on, but Jon and I felt good about this decision. A place opened for Brynn in June, we were given the tuition assistance that we needed, and I was hired as the music teacher!
Yes, Brynn does sit at a desk all day long - apart from recess, chapel, music, PE and library. Yes, his teacher is not your normal K teacher - for one thing she has 2 Ph D's under her belt! However, she is a great teacher, and all the kids love her. Not just her current kids, but those she has taught in the past. It seems like she can't go anywhere on campus without an older kid running up to her, wanting a hug!
And his reading? He is almost done with the first 3rd Grade book on his reading list!! My son who was barely reading three letter words last summer, is fluently reading a 3rd Grade book. He reads right through words that I think will trip him up, but then stumbles on shorter ones! He just ran downstairs to tell Jon and I that he read 3 books tonight, and one of them has 4 chapters!!! He loves reading. What more could I want for Brynn's first year of school? Oh, and did I mention he is writing in cursive?? And doing it beautifully too!This was truly the right decision for him.
Now, a year later, some friends and I are going through the process again. What will we do with our preschoolers next year? I have 2 friends with kiddos who'll turn 3 this summer, and 1 with slightly older twins who aren't quite ready for K. They have been diligently making the rounds of our local preschools, asking good questions and making decisions as to where to enroll their little ones in the Fall.
We don't really have to worry about where to send Iann next year: he will be going to the county preschool, where he'll continue getting speech and occupational therapy from the school district. The question that we are currently dealing with is how many mornings a week will he go? The school is also open for underprivileged kids who go 4 mornings a week, and well as some paying kids. We don't have to send Iann all four mornings since he has special needs, so we know he'll not be going that often.
On the other hand, a friend who teaches SN in FL pointed out that two mornings a week might be hard for Iann - having to get used to new place, new people and a new routine might be easier if he is there more often. So, at this point we are thinking that he'll go three mornings a week, getting the necessary therapy on those days. Iann needs to be evaluated by the school district, and then we'll meet with them to decide what is best for him. This process will start in May.
Brynn went to preschool two mornings a week when he was 3, and he was spot on in all areas. This was enough for a first school experience. Based on that, I am a little worried about sending Iann, my son who is really delayed, to school three mornings a week. Will he actually learn? Will he interact with the other kids or will he wonder around aimlessly, hitting two blocks together? Jon, who wasn't ovelry excited about Brynn going to preschool at all, had a very wise thought on this:
"Iann has special needs: we need to give him what he requires. We wouldn't normally put a 3 year old in school three mornings a week, but he needs to catch up. He needs all the help he can get, as early as we can give it to him."
Wow, what a smart, sensitive man I married.
Tuesday, March 29, 2011
Sunday, March 27, 2011
Blossoming Baby
Iann had speech therapy on Friday with his Lionel (go see the King's Speech if you have no idea what I am talking about!) and, after about 4 sessions with him, my little scamp has realized that BM will make him work. So, instead of being compliant and doing most of what BM wanted, Iann tried the "I am so cute, don't make me work" tactic. Didn't get him far. BM isn't here to be Iann's friend, he is here to help him find his voice. Quite a few times BM told Iann "You may not like me, but you will (eventually) do what I want." Go for it man!
I was happy to report to BM that I have been working with Iann every day, teaching him new words (signs) and working on PECS. PECS stands for Picture Exchange Communication System, in which we are teaching Iann to use pictures to ask for things. For example, I have a picture of bubbles. I'll get it out, show Iann the bubbles, and wait for him to pick the picture up and hand it to me. Then I say "Bubbles" and blow some. I then put the picture back, and don't blow more bubbles until Iann gives me the picture again, and looks me in the eye. The eye contact part is really important. Repeat as many times as Iann is interested in bubbles.
As BM pointed out, my work is paying off. Iann is now talking ... not with words as most of us do, but with sign language. He can now say about 20 words and learns at least one new word each day. My biggest challenge right now is learning the signs myself so I can teach them to him! BM reckons that Iann is now solidly at an 18 month old communication level, but still doesn't know why he isn't trying to babble more varied noises.
"Ma-ma-ma-ma-ma-ma-ma" is Iann's main babble, with the occasional "ba-ba-ba" or "fa-fa-fa" thrown in for a change. This is a little worrying to BM so he suggested that we take Iann to an audiologist in Grand Junction for a thorough hearing check. Iann is certainly able to hear, but to what degree? Does he hear all sounds or just some? These are the questions BM wants answered. So, off to another specialist appointment we go.
Another area where Iann is blossoming is in his awareness of other kiddos. On Thursday night we went over to eat with a family we get together with about once a week. We've been doing this for almost a year so Iann knows these people really well. They have a girl who will be 3 in May (3 months older than Iann) and a boy who will be 1 at the end of the month. Usually their daughter follows Brynn around, and Iann plays by himself. Not this time. Iann was following them around too.
Iann still gets strapped into a booster seat so he'll focus on eating, and has always been happy to sit with the adults and eat, until his food is finished. Thursday night, we lost his attention as soon as he saw the trampoline outside the window. He started signing "jump" and was so emphatic with it, I thought he would tip over his chair. We let him down and he was gone, jumping with the other 2 kids. On the tramp, off the tramp, around the corner to the slide and back. Repeat a hundred times. He was right there with Brynn and his little 2 yr old buddy.
At one point, their daughter was put in timeout on the piano bench, and my boys wandered over to see what she was doing. The timeout didn't last too long but all 4 kids had a blast:
Iann and I went back to this friend's house on Friday morning and our two year olds played together. I was almost in tears - it was so great to see Iann playing with another child. Now, don't get me wrong, they didn't sit down and play lego's, they wandered about outside for most of the morning. But if one got on the tramp, the other followed. If one went to the slide, the other was right behind. When one came in to warm up, they were both inside. They wanted to be together, that much was obvious.
My little one is growing up. Sure, he is still way behind in both communication and cognitive skills, but he is moving forward in leaps and bounds now.
I was happy to report to BM that I have been working with Iann every day, teaching him new words (signs) and working on PECS. PECS stands for Picture Exchange Communication System, in which we are teaching Iann to use pictures to ask for things. For example, I have a picture of bubbles. I'll get it out, show Iann the bubbles, and wait for him to pick the picture up and hand it to me. Then I say "Bubbles" and blow some. I then put the picture back, and don't blow more bubbles until Iann gives me the picture again, and looks me in the eye. The eye contact part is really important. Repeat as many times as Iann is interested in bubbles.
As BM pointed out, my work is paying off. Iann is now talking ... not with words as most of us do, but with sign language. He can now say about 20 words and learns at least one new word each day. My biggest challenge right now is learning the signs myself so I can teach them to him! BM reckons that Iann is now solidly at an 18 month old communication level, but still doesn't know why he isn't trying to babble more varied noises.
"Ma-ma-ma-ma-ma-ma-ma" is Iann's main babble, with the occasional "ba-ba-ba" or "fa-fa-fa" thrown in for a change. This is a little worrying to BM so he suggested that we take Iann to an audiologist in Grand Junction for a thorough hearing check. Iann is certainly able to hear, but to what degree? Does he hear all sounds or just some? These are the questions BM wants answered. So, off to another specialist appointment we go.
Another area where Iann is blossoming is in his awareness of other kiddos. On Thursday night we went over to eat with a family we get together with about once a week. We've been doing this for almost a year so Iann knows these people really well. They have a girl who will be 3 in May (3 months older than Iann) and a boy who will be 1 at the end of the month. Usually their daughter follows Brynn around, and Iann plays by himself. Not this time. Iann was following them around too.
Iann still gets strapped into a booster seat so he'll focus on eating, and has always been happy to sit with the adults and eat, until his food is finished. Thursday night, we lost his attention as soon as he saw the trampoline outside the window. He started signing "jump" and was so emphatic with it, I thought he would tip over his chair. We let him down and he was gone, jumping with the other 2 kids. On the tramp, off the tramp, around the corner to the slide and back. Repeat a hundred times. He was right there with Brynn and his little 2 yr old buddy.
At one point, their daughter was put in timeout on the piano bench, and my boys wandered over to see what she was doing. The timeout didn't last too long but all 4 kids had a blast:
Iann and I went back to this friend's house on Friday morning and our two year olds played together. I was almost in tears - it was so great to see Iann playing with another child. Now, don't get me wrong, they didn't sit down and play lego's, they wandered about outside for most of the morning. But if one got on the tramp, the other followed. If one went to the slide, the other was right behind. When one came in to warm up, they were both inside. They wanted to be together, that much was obvious.
My little one is growing up. Sure, he is still way behind in both communication and cognitive skills, but he is moving forward in leaps and bounds now.
Wednesday, March 23, 2011
Tuesday, March 22, 2011
Baby Bath Time
Brynn was very excited to have a little brother to share bath-time with, even though Alex was in his little bath tub.
Of course, Brynn sometimes wanted to be a baby again too!
I actually clearly remember this day; looking at my sweet baby in the little bath, thinking about how huge that scar was on his little belly. Jon reassured me that it wouldn't always be so big, that it would shrink in relation to the size of his belly as he grew older.
I saw it as proof of the power of modern medicine, showing how much could be accomplished these days. And truly, Alex's surgery did give Alex six months with us.
Of course, Brynn sometimes wanted to be a baby again too!
I actually clearly remember this day; looking at my sweet baby in the little bath, thinking about how huge that scar was on his little belly. Jon reassured me that it wouldn't always be so big, that it would shrink in relation to the size of his belly as he grew older.I saw it as proof of the power of modern medicine, showing how much could be accomplished these days. And truly, Alex's surgery did give Alex six months with us.
Which is which????
Can you guess which is Brynn and which is Alex? They are about the same age in these pictures.
Alex is the first one, Brynn the redhead on the bottom.
How about these two???
Tee hee hee :)
Alex is the first one, Brynn the redhead on the bottom.
How about these two???
Tee hee hee :)
Monday, March 21, 2011
Specific memories
It is 3:53 am, and this is my second post of the morning: Iann is awake. After about 2 weeks of sleeping all night, he is up this morning. He woke up at around 2:30am, same time as always. After lying in bed for ten minutes, I got up, grabbed the computer and came upstairs.
As I was walking up, our dog ran to the back door. A little odd, but oh well. He may have been attempting to escape my wrath at the present he left me on the couch. In the 3 years we've had him I believe this is the first time he has even had an accident in the house, let alone on my couch!!!! Isn't changing dirty diapers enough?
I didn't hear Iann at all as I cleaned up the mess and put the dog in his crate, so I returned to bed. Just as I was about to drift off I heard Iann doing what Jon and I call 'crib gymnastics.' (We came up with this phrase over a year ago, so Iann has obviously had sleeping issues for a while now!) 'Crib gymnastics' involves Iann banging about in his crib, with little to no crying involved. So, I turned on the humidifier in our room to block out the noise for sleeping hubby, and came back up. Iann got a dose of Benedryl a little while ago and I am waiting for it to take effect, for him to go back to sleep. While I sit out in the living room listening to him, I figured I may as well move forward with my Alex project.
I have so very many pictures of him, all stored on my hard drive, backed up on disks. But what good are they doing there? I don't ever look at them; I don't think anyone does. The goal for my posts on Alex is to print them all, binding them into a book. That way I won't feel like he is living on only in my computer.
Adjusting to life with two kids was hard for me, there are so many things I feel like I did wrong. I worried about how much TV Brynn was watching. I found myself yelling at Brynn as we were getting ready to go somewhere, because Alex would be crying in his car seat. Bedtime was a nightmare: Jon worked swing shift, 2:45 - 11pm, so I was doing it alone. It seemed like whenever I worked out which one to put to bed first, something changed and Alex would end up crying while I was reading Brynn a book, or screaming in his crib.
We had some great times though. Alex was sent home from the NICU with a clean bill of health. It was predicted that he would make a full recovery and grow to be just like any other little boy. I am so grateful for this because I don't feel like I wasted any of our short time with him worrying about the future. Not knowing what was to come allowed us to enjoy him while we could.
Here are some memories from our first month together:
The name of the restaurant in Ridgeway where we were eating escapes me at this time of day (4:30am, Iann still moaning), however mum had something in her purse to amuse Brynn. He wanted them fashioned into glasses, wearing them with his cape for the rest of the meal.
Jon's parents came out to visit us in late August. His mum had met Alex at the hospital, however it was the first time his dad had had the pleasure. Their hotel had a pool so we spent some time there, as well as fishing and general lounging around in our front garden.
I feel like I have been given a second chance at mothering two boys with Iann now. Things certainly aren't perfect around here, but I do try to keep my frustration at life with two kids in check, not taking it out on Brynn. He riles me up enough on his own, he doesn't deserve to be my scapegoat.
On that note, I am heading back to bed. Iann is still moaning every once in a while, so I guess Benedryl has lost it's power over him. Sigh. Or maybe he spat too much out when I was wrestling it into him. I need to be up in 2 hrs, and having lost 2 hours of sleep this morning it may be a rough day. One where I will fight to keep 'crazy mama' dormant!
I feel mostly for Jon, although he has slept through this: I work today and he watches Iann, taking him to a gymnastics class. It's hard enough getting Iann to do what Coach is asking of the class on a normal day, and near impossible when he's tired from being up for so long.
Homecoming
Alex was released from Children's Hospital, Thursday August 9, 2007, on a 'whiff' of oxygen. He was breathing fine without it, but we had to go over one particularly high mountain pass to get home and I was worried about him. Thankfully the drive home was mostly uneventful.We stopped once to grab something to eat and give him a bottle, and once again a little over an hour from home. I have a vague recollection of contacting the Dr on call at the Pediatric Clinic, but I can't remember why. Mustn't have been a big deal, with no need for follow up! I guess I was just super worried about my little guy.
Brynn was very excited to see his little brother ... or was it the fact that I was home? Alex was in the NICU for 16 days, and I had seen Brynn for only 2 of those days.
The following morning we had a Dr's appointment for Alex, where they checked his oxygen levels. Once again he was breathing so well that he was removed from the oxygen. Before we took hi
m in, we got this first picture of the little guy on his changing table! He is so tiny. It's easy to forget how little he was.The whole time he was in the hospital I was giving him bottles of pumped milk. I had the option to try and nurse him, but was told that tended to take longer for NICU babies to learn, so decided to wait until we got home. The Dr's office weighed him that Friday, and told me to nurse him as much as possible over the weekend, giving him maybe one bottle on Saturday and none on Sunday, then go back in for a weight check on Monday. If he'd gained weight, I could switch to nursing only.
The squirt took to it like a duck to water, so I was able to stop pumping. I see this as a huge blessing: I'm not sure how long pumping would have lasted amidst the chaos of home. Alex was still pretty scrawny so he had to have a calorie adder once a day in a small bottle, but I had so much saved up, and sent home from the hospital with us, that I don't know that I ever pumped again! I truly detested doing it but will forever be grateful that I did.
Here are a few of the highlights of our first few days at home:
Getting a bottle from my mum, with Brynn's help
With Rosa
Ready for our first family walkFriday, March 18, 2011
Gardening Miller Style
Two years ago Jon dug up a section of our backyard and grew a garden full of tomato's, squash and zucchini. Nothing was planted last year since we were a little overwhelmed with everything that was going on with Iann, but Jon did spend some time building a raised garden. Over the past ten months he has been filling it with grass cuttings, leaves, food scraps and dirt.
Each time he throws something substantial in there, Brynn climbs in to tramp it down. This evening, Iann wanted to join in the fun.
It will be interesting to see what grows this summer!
On another note, I realize that I haven't given updates on my last few posts. Iann's appointment with the ENT a few weeks ago resulted in us being sent to get an x-ray taken of his adenoids. Sure enough, they are huge, blocking his airway. This is more apparent when he is relaxed and sleeping, so his brain is waking him up to move into a better position for breathing. Apparently this can happen up to seven times an hour, but it doesn't always fully wake him up. Regardless, the Dr's are quite sure that he isn't getting a restful night's sleep. Not restful at all.
Plan of action? A month of using Nasonex nasal spray once a day to see if that will shrink them. If not, he's headed for adenoid removal surgery. So, we are hoping and praying that the Nasonex works, because I'm not sure how I'll handle another surgery in the family!
As for Brynn's day at school yesterday, he wore his kilt all day, albeit with jeans on underneath. He says he was a little embarrassed because people kept asking him why he was wearing a skirt, but I don't think he suffered any lasting damage.
Each time he throws something substantial in there, Brynn climbs in to tramp it down. This evening, Iann wanted to join in the fun.
It will be interesting to see what grows this summer!
On another note, I realize that I haven't given updates on my last few posts. Iann's appointment with the ENT a few weeks ago resulted in us being sent to get an x-ray taken of his adenoids. Sure enough, they are huge, blocking his airway. This is more apparent when he is relaxed and sleeping, so his brain is waking him up to move into a better position for breathing. Apparently this can happen up to seven times an hour, but it doesn't always fully wake him up. Regardless, the Dr's are quite sure that he isn't getting a restful night's sleep. Not restful at all.
Plan of action? A month of using Nasonex nasal spray once a day to see if that will shrink them. If not, he's headed for adenoid removal surgery. So, we are hoping and praying that the Nasonex works, because I'm not sure how I'll handle another surgery in the family!
As for Brynn's day at school yesterday, he wore his kilt all day, albeit with jeans on underneath. He says he was a little embarrassed because people kept asking him why he was wearing a skirt, but I don't think he suffered any lasting damage.
Thursday, March 17, 2011
The Innocence of Youth
Almost 3 years ago Brynn was the ring bearer in one of my best friends weddings. This lovely lady was marrying an Irish man. My parents were both born in Norther Ireland, Dad's family of Scotch-Irish descent, so we thought it would be cute for Brynn to wear a Davidson tartan kilt (my family name is Davidson.) So, my mum and dad ordered him up the whole outfit from a tailor in Hong Kong. Yes, there is a little irony in the fact that a Chinese tailor made Brynn's Scotch-Irish kilt!
Dad and Brynn wore their kilts to the wedding, and I think other than the beauty of the bride herself, Brynn stole the day:
Today is St. Patrick's Day and I was planning to send Brynn to school in his Irish rugby shirt and jeans. However during a conversation with his teacher, it was suggested that my Dad go into the classroom dressed in his kilt and talk to the kiddos.
"I can wear my kilt too," said Brynn.
I will admit that right away I was a little worried about what the other kids would say. Would they tease him? Would he feel embarrassed? But he really wanted to do it.
I walked him into his classroom this morning and the teachers loved it. But he was nervous; he ran into the bathroom to put jeans on under the kilt. Then we headed for the playground and sure enough, the first girl that saw him said "He's wearing a skirt." Brynn didn't hear her, and it was time for me to leave.
I did so with a bit of a heavy heart. My little baby was growing up, and his innocence was being tested. My prayer is that none of the bigger kids tease him today, that they are respectful enough to be interested, not rude.
Can you see my mother's heart of worry here?
Dad and Brynn wore their kilts to the wedding, and I think other than the beauty of the bride herself, Brynn stole the day:
Today is St. Patrick's Day and I was planning to send Brynn to school in his Irish rugby shirt and jeans. However during a conversation with his teacher, it was suggested that my Dad go into the classroom dressed in his kilt and talk to the kiddos.
"I can wear my kilt too," said Brynn.
I will admit that right away I was a little worried about what the other kids would say. Would they tease him? Would he feel embarrassed? But he really wanted to do it.
I walked him into his classroom this morning and the teachers loved it. But he was nervous; he ran into the bathroom to put jeans on under the kilt. Then we headed for the playground and sure enough, the first girl that saw him said "He's wearing a skirt." Brynn didn't hear her, and it was time for me to leave.
I did so with a bit of a heavy heart. My little baby was growing up, and his innocence was being tested. My prayer is that none of the bigger kids tease him today, that they are respectful enough to be interested, not rude.
Can you see my mother's heart of worry here?
Wednesday, March 16, 2011
Sunday, March 13, 2011
What Do You Get Excited About?
The above question was posed to us this morning at church, in the midst of a sermon on why we don't live our lives singularly for Jesus. The pastor asked us if we find following Christ to be boring, and then asked the question. It got me thinking; I grabbed a piece of paper and pencil and came up with the following list:
1. Hearing Brynn read to Iann after we put them in bed
2. Watching Iann learn new signs every day, increasing his ability to communicate
3. The peace of nap-time
4. Listening to the boys laugh when Jon tickles/wrestles with them
5. Hearing Brynn say "This dinner is yummy, mama."
6. Paying every bill, every month
7. Seeing the number on the scale go down ... albeit slowly
8. Sleeping all night
9. Long conversations with my friends
10. Realizing that I am blessed, even with all the heartache
So why do I focus on the heartache so much??
What do you get excited about? Write a list, it's quite an eye-opener.
1. Hearing Brynn read to Iann after we put them in bed
2. Watching Iann learn new signs every day, increasing his ability to communicate
3. The peace of nap-time
4. Listening to the boys laugh when Jon tickles/wrestles with them
5. Hearing Brynn say "This dinner is yummy, mama."
6. Paying every bill, every month
7. Seeing the number on the scale go down ... albeit slowly
8. Sleeping all night
9. Long conversations with my friends
10. Realizing that I am blessed, even with all the heartache
So why do I focus on the heartache so much??
What do you get excited about? Write a list, it's quite an eye-opener.
Saturday, March 12, 2011
A New View of Communication
Like most people in the world, I used to think that communication involved using words to let another person know what you wanted/needed, what you were thinking about, etc. Since starting this journey with Iann, I have discovered that is 100% false.
We first started to realize that Iann was delayed when my mother-in-law pointed out that he wasn't progressing in how he played with toys. When I asked Jon's sister, and ER Dr, what she thought, she said, "Yes, I can see what mum is talking about, but it worries me more that he isn't babbling."
Iann's only way of letting us know his needs was to cry or whine. At this stage, 15 months, he didn't point at things he wanted and it was clear that he didn't understand what I was saying to him. He didn't follow simple directions, such as 'Bring me your snack cup.' He just looked at me blankly.
A year, and many hours of therapy, later Iann is still classified as 'non-verbal' but he is definitely communicating. It is fascinating for me to learn how many skills a little boy needs to master in order to speak: his central nervous system must be aware of where his mouth and tongue are (Iann's is getting there); the lower portion of his face, including jaw, lips and tongue, must all have enough muscle tone to move together correctly (Iann's doesn't); he has to learn how to 'turn his voice on' when he wants to say something (slowly becoming one of Iann's strong points). With a normally developing child, all this happens without parents realizing. Not so with Iann.
However, one of the most important foundations for speech is the understanding of how powerful communication is. How empowering it can be to make oneself understood. This is where Iann is blasting forward every day. An example:
On weekdays we follow a pretty normal routine in order to get Brynn to school in time. The boys wake up, we eat breakfast, Brynn gets dressed (Iann too if he's had a 'blow-out'), the dog gets fed, I make Brynn's lunch, we get in the car and off we go. A normal weekday routine. On the weekends, it all slows down a little. Brynn watches Saturday morning cartoons, Iann paddles about, and I drink my coffee with a good book. This morning was no different.
Until Iann came up to me, patting his mouth, it. At first I thought he was blowing kisses, so I said "I love you too honey." But he kept doing it. I payed a little more attention to him (keeping it honest here), and thought about what he was trying to tell me.
"Do you want to eat, love?" I asked, thinking he was trying to sign 'eat.' He nodded his head, smiling from ear to ear. We ate dinner at some friends house last night, and I distinctly remember their 2 yr old saying "I'm hungry." The exact same thing Iann was now telling me.
He felt his hunger, and came to me (initiation), told me what he wanted (communication), and kept on when I misunderstood him (persistence). Three very powerful, and important, tools.
Iann is communicating.. He doesn't use words, he uses a mixture of sign language and pointing, with a fair ammount of whining thrown in for good measure. While he does sometimes babble 'ma-ma-ma-ma' when looking at me, he has never really said 'Mama.' He has certainly never said 'Dada' but has a sign approximation for him.
What's that, you ask? Well you know how kids come up with their own version of words when learning to talk? The same is true with sign language. There is only so much you can do with your hands, and it is hard for little ones to get the nuances of finger movement down. The placement of your thumb on your head on one side says 'dada' while on the other can say 'cow.'
Bottom line, Iann may be at a 6-9 month level in terms of verbal ability, but he is way ahead of that in overall communication. And, any good Speech Therapist worth his or her salt, will tell you that is most important. Sure, he's not signing or comprehending at a 2 1/2 yr old level yet, but he's catching up everyday.
Will Iann ever talk? We sure as heck hope so, although according to the Fragile X literature I've read, he may not do so until he is 5,6 or even 7. Gulp. Then again, he may surprise us all and start talking by the end of the summer. Either way, 99% of boys with FX do learn to talk.
In the meantime, I am going to start teaching the people who are around him most - who aren't therapists - what he is saying with his hands. I am sure there is nothing more frustrating for him then to be saying something and the person he is talking to, not understand him.
We first started to realize that Iann was delayed when my mother-in-law pointed out that he wasn't progressing in how he played with toys. When I asked Jon's sister, and ER Dr, what she thought, she said, "Yes, I can see what mum is talking about, but it worries me more that he isn't babbling."
Iann's only way of letting us know his needs was to cry or whine. At this stage, 15 months, he didn't point at things he wanted and it was clear that he didn't understand what I was saying to him. He didn't follow simple directions, such as 'Bring me your snack cup.' He just looked at me blankly.
A year, and many hours of therapy, later Iann is still classified as 'non-verbal' but he is definitely communicating. It is fascinating for me to learn how many skills a little boy needs to master in order to speak: his central nervous system must be aware of where his mouth and tongue are (Iann's is getting there); the lower portion of his face, including jaw, lips and tongue, must all have enough muscle tone to move together correctly (Iann's doesn't); he has to learn how to 'turn his voice on' when he wants to say something (slowly becoming one of Iann's strong points). With a normally developing child, all this happens without parents realizing. Not so with Iann.
However, one of the most important foundations for speech is the understanding of how powerful communication is. How empowering it can be to make oneself understood. This is where Iann is blasting forward every day. An example:
On weekdays we follow a pretty normal routine in order to get Brynn to school in time. The boys wake up, we eat breakfast, Brynn gets dressed (Iann too if he's had a 'blow-out'), the dog gets fed, I make Brynn's lunch, we get in the car and off we go. A normal weekday routine. On the weekends, it all slows down a little. Brynn watches Saturday morning cartoons, Iann paddles about, and I drink my coffee with a good book. This morning was no different.
Until Iann came up to me, patting his mouth, it. At first I thought he was blowing kisses, so I said "I love you too honey." But he kept doing it. I payed a little more attention to him (keeping it honest here), and thought about what he was trying to tell me.
"Do you want to eat, love?" I asked, thinking he was trying to sign 'eat.' He nodded his head, smiling from ear to ear. We ate dinner at some friends house last night, and I distinctly remember their 2 yr old saying "I'm hungry." The exact same thing Iann was now telling me.
He felt his hunger, and came to me (initiation), told me what he wanted (communication), and kept on when I misunderstood him (persistence). Three very powerful, and important, tools.
Iann is communicating.. He doesn't use words, he uses a mixture of sign language and pointing, with a fair ammount of whining thrown in for good measure. While he does sometimes babble 'ma-ma-ma-ma' when looking at me, he has never really said 'Mama.' He has certainly never said 'Dada' but has a sign approximation for him.
What's that, you ask? Well you know how kids come up with their own version of words when learning to talk? The same is true with sign language. There is only so much you can do with your hands, and it is hard for little ones to get the nuances of finger movement down. The placement of your thumb on your head on one side says 'dada' while on the other can say 'cow.'
Bottom line, Iann may be at a 6-9 month level in terms of verbal ability, but he is way ahead of that in overall communication. And, any good Speech Therapist worth his or her salt, will tell you that is most important. Sure, he's not signing or comprehending at a 2 1/2 yr old level yet, but he's catching up everyday.
Will Iann ever talk? We sure as heck hope so, although according to the Fragile X literature I've read, he may not do so until he is 5,6 or even 7. Gulp. Then again, he may surprise us all and start talking by the end of the summer. Either way, 99% of boys with FX do learn to talk.
In the meantime, I am going to start teaching the people who are around him most - who aren't therapists - what he is saying with his hands. I am sure there is nothing more frustrating for him then to be saying something and the person he is talking to, not understand him.
Friday, March 11, 2011
The NICU stay
Here are the highlights of those first few weeks:
Holding Alex was quite difficult those first few days after the surgery, since he w
as hooked up to all sorts of things. Initially, I would ask a nurse to help me lift him out of this warmer, to make sure that I didn't disconnect something. Then, when I felt comfortable, I began lifting him out myself. Yes, they were the professionals, but he was my son.
Both Grandmas' were very supportive, and took turns sitting with him so I could go and eat:
3 days after surgery, the Dr's took Alex off the ventilator, and it was deemed that his oxygen levels were so high, he didn't even need to be on oxygen. That same day, he pooped for the first time, so the NG tube was also removed. Here is a cute pic of Alex with no tubes around his face, shortly before they inserted a feeding tube into his nose:
Now we come to another very vague memory. At least the timing of it is vague! A few days after the surgery, my dad and Jon got Samaritan Aviation to fly them back to Montrose. While Rosa was doing a great job with Brynn, we wanted a family member with him too, and Jon needed to get back to work. Then, a day later Dad drove back up with a car - we'd been renting one. I think. Then a few days after that Jon drove Brynn up to meet his brother. Like I said, none of us can remember exactly how that all went, but Brynn did get to meet Alex in the hospital. Jon's mum had left by this point, so my parents took Brynn to see all the sights of Denver: the zoo, the aquarium, etc. Jon said the drive back to Montrose was great because Brynn was so worn out! This is our first family picture (Brynn was such a cute 2 yr old, wasn't he????):
Alex was moved out of the NICU to the 'Step Down' nursery once he started eating enough to remove the NG tube. There was a certain amount of mil
k that he had to eat for 3 straight feedings before they would release him. I made sure that I was the one to give him his bottle at every feeding during the day, but let the nurses deal with night feedings. We stayed for a few days in a local hotel, until there was room at the Ronald McDonald house.Jon was back at work, so mum and I were holding down the fort at the hospital.
Finally, we were told that he could go home the next day. Jon drove down that evening, and mum drove her car home. She was such a huge support throughout that whole ordeal, couldn't have done it without her. Thanks, mum. You are the best. My sister's baby was admitted to hospital in England at the same time, with RSV, and poor mum was torn between the two of us,however ultimately decided to stay in CO.
We had to show the nurses that we had a car seat, and knew how to strap Alex into it before we could leave:
We were on our way home!!!!!
Holding Alex was quite difficult those first few days after the surgery, since he w
as hooked up to all sorts of things. Initially, I would ask a nurse to help me lift him out of this warmer, to make sure that I didn't disconnect something. Then, when I felt comfortable, I began lifting him out myself. Yes, they were the professionals, but he was my son.Both Grandmas' were very supportive, and took turns sitting with him so I could go and eat:
3 days after surgery, the Dr's took Alex off the ventilator, and it was deemed that his oxygen levels were so high, he didn't even need to be on oxygen. That same day, he pooped for the first time, so the NG tube was also removed. Here is a cute pic of Alex with no tubes around his face, shortly before they inserted a feeding tube into his nose:
Now we come to another very vague memory. At least the timing of it is vague! A few days after the surgery, my dad and Jon got Samaritan Aviation to fly them back to Montrose. While Rosa was doing a great job with Brynn, we wanted a family member with him too, and Jon needed to get back to work. Then, a day later Dad drove back up with a car - we'd been renting one. I think. Then a few days after that Jon drove Brynn up to meet his brother. Like I said, none of us can remember exactly how that all went, but Brynn did get to meet Alex in the hospital. Jon's mum had left by this point, so my parents took Brynn to see all the sights of Denver: the zoo, the aquarium, etc. Jon said the drive back to Montrose was great because Brynn was so worn out! This is our first family picture (Brynn was such a cute 2 yr old, wasn't he????):
Alex was moved out of the NICU to the 'Step Down' nursery once he started eating enough to remove the NG tube. There was a certain amount of mil
k that he had to eat for 3 straight feedings before they would release him. I made sure that I was the one to give him his bottle at every feeding during the day, but let the nurses deal with night feedings. We stayed for a few days in a local hotel, until there was room at the Ronald McDonald house.Jon was back at work, so mum and I were holding down the fort at the hospital.Finally, we were told that he could go home the next day. Jon drove down that evening, and mum drove her car home. She was such a huge support throughout that whole ordeal, couldn't have done it without her. Thanks, mum. You are the best. My sister's baby was admitted to hospital in England at the same time, with RSV, and poor mum was torn between the two of us,however ultimately decided to stay in CO.
We had to show the nurses that we had a car seat, and knew how to strap Alex into it before we could leave:
We were on our way home!!!!!
Mama's Little Fish
Yesterday was the last day of Brynn's American Red Cross Level 3 swim lessons. He has had the same wonderful teacher all year long, and she and I have worked up quite a rapport.
Before Level 3 started, 4 weeks ago, I told Brynn that he could start Karate lessons after he passes Level 3, because I want him to be completely safe in the pool this summer. Unfortunately, I wasn't sure that Brynn would pass last night, and so was looking at another month of sitting at the pool, two nights a week.
On Tuesday night the kids did most of the test - they floated, they glided, they jumped into the deep end and swam a little. It looked to me like Brynn did pretty well, but I knew that last night was the biggie: the distance swim. About a week ago his teacher told me that he has all the necessary elements together to pass, but she wasn't sure that he had the stamina for the distance swim. She pointed out that he was the littlest one in the class, at least a year younger than all the other kiddos, many of whom also couldn't do the distance swim.
When we arrived at the pool last night, his teacher again reminded me that he needed to do that swim to pass. I told her about the karate deal, and we decided to tell him that he was too young to pass Level 3 this time around, and so to start karate now, coming back to Level 3 when he was older.
Before he got into the pool, I took him aside and said, "Sweetie, your teacher thinks you might be too young to do this distance swim today, and that's ok. But I want you to do your best. Daddy and I will be super proud of you whatever happens, if we know you did your best."
"Ok, mummy. I'll do my best," he replied, running off to join his class.
I settled into a fun game of Sequences for Kids with a friend and her young ones while the big kids swam. It was very engrossing; I was keeping an eye on the swimmers, but somehow missed seeing Brynn swim.
While the teacher was writing their pass/fail cards, she let them have 2 turns each on the big, purple slide. So far this year, Brynn had refused to go on it, saying he was a little scared. Not yesterday.
I watched as he slowly climbed to the top and sat down in the mouth of the enclosed smile. I held my breath to see if he would push off.
Ten seconds later he was climbing out of the pool yelling, "Mum, did you see me???" Standing in front of the slide, dripping wet with blue goggles on he continued yelling, "Mum, that slide is totally awesome." My friend and I started laughing, it was the cutest thing.
Then the teacher came over, "Did you see him swim?" she asked. Um, no. "He did it!! I have to pass him."
What? My little just-turned six year old just swam half the length of the pool doing elementary front crawl, floated on his back for 60 seconds, then swam back doing elementary back stroke??? Well, mostly. His teacher did spot him once or twice during the back float because he is so stinking little, and doesn't have an ounce of fat on his body to add buoyancy, but she overlooked that!
You should have heard his whoops when we told him!! "Mama," he said, "I tried my best and it worked!"
Can you tell how proud I am of him?
It is so rewarding to see your kids work hard at something, and for them to see the benefits of their work.
So for now, we are taking a few weeks off to relax: swimming and ski school are both over for the year. However, the craziness will start again in April , when he begins taking karate, twice a week.
I think it's dad's turn to take him to this one ...
Before Level 3 started, 4 weeks ago, I told Brynn that he could start Karate lessons after he passes Level 3, because I want him to be completely safe in the pool this summer. Unfortunately, I wasn't sure that Brynn would pass last night, and so was looking at another month of sitting at the pool, two nights a week.
On Tuesday night the kids did most of the test - they floated, they glided, they jumped into the deep end and swam a little. It looked to me like Brynn did pretty well, but I knew that last night was the biggie: the distance swim. About a week ago his teacher told me that he has all the necessary elements together to pass, but she wasn't sure that he had the stamina for the distance swim. She pointed out that he was the littlest one in the class, at least a year younger than all the other kiddos, many of whom also couldn't do the distance swim.
When we arrived at the pool last night, his teacher again reminded me that he needed to do that swim to pass. I told her about the karate deal, and we decided to tell him that he was too young to pass Level 3 this time around, and so to start karate now, coming back to Level 3 when he was older.
Before he got into the pool, I took him aside and said, "Sweetie, your teacher thinks you might be too young to do this distance swim today, and that's ok. But I want you to do your best. Daddy and I will be super proud of you whatever happens, if we know you did your best."
"Ok, mummy. I'll do my best," he replied, running off to join his class.
I settled into a fun game of Sequences for Kids with a friend and her young ones while the big kids swam. It was very engrossing; I was keeping an eye on the swimmers, but somehow missed seeing Brynn swim.
While the teacher was writing their pass/fail cards, she let them have 2 turns each on the big, purple slide. So far this year, Brynn had refused to go on it, saying he was a little scared. Not yesterday.
I watched as he slowly climbed to the top and sat down in the mouth of the enclosed smile. I held my breath to see if he would push off.
Ten seconds later he was climbing out of the pool yelling, "Mum, did you see me???" Standing in front of the slide, dripping wet with blue goggles on he continued yelling, "Mum, that slide is totally awesome." My friend and I started laughing, it was the cutest thing.
Then the teacher came over, "Did you see him swim?" she asked. Um, no. "He did it!! I have to pass him."
What? My little just-turned six year old just swam half the length of the pool doing elementary front crawl, floated on his back for 60 seconds, then swam back doing elementary back stroke??? Well, mostly. His teacher did spot him once or twice during the back float because he is so stinking little, and doesn't have an ounce of fat on his body to add buoyancy, but she overlooked that!
You should have heard his whoops when we told him!! "Mama," he said, "I tried my best and it worked!"
Can you tell how proud I am of him?
It is so rewarding to see your kids work hard at something, and for them to see the benefits of their work.
So for now, we are taking a few weeks off to relax: swimming and ski school are both over for the year. However, the craziness will start again in April , when he begins taking karate, twice a week.
I think it's dad's turn to take him to this one ...
Thursday, March 10, 2011
Brynn's 6th Birthday Party
We didn't want to do anything to huge for Brynn's birthday, so we decided to let him invite 2 friends to Chucky Cheese in GJ. This was a hard decision to make: the last 'family adventure' we took with Brynn and Alex was to Chucky Cheese. We hadn't been back since then. Life has to do on though and we have limited things availble to do in small town world.
Brynn chose his two friends and off we went. We also invited our good friends L & K Master's to come, with their 2 kiddos - almost 3 and almost 1. I was somewhat apprehensive about how Iann would handle the lights and noise, but he took off running as soon as we got there. He didn't do any actual games, but enjoyed watching the older boys and being with Miss Master's ...
"Mommy, he's not listening to me ..."Overall, the day was a great success - while I kept looking over to where we sat with Alex, remembering him snuggling into his sling, I was able to separate that experience to the one at hand. Brynn deserves a mum who is present with him for his big events, not one who is living in the past.
I told the other mum's that we'd have thier sons home by 6pm - it was a school night after all. The boys were still picking out their prizes a little after 6pm ... and it's over an hours drive for home! Opps. I hope they trust me their boys again!
Three happy, sugar-filled boys.Tuesday, March 8, 2011
Pulled in so many directions
Before Jon and I married, we were driving over a hill in Northern CA, talking about what life would be like when we were married. We joked about how we would both be working two jobs, just to pay the bills, and how we wouldn't see each other during the day, but would drop into bed tired but together.
And so here we are.
Jon works 6:45am - 3pm, Wed - Sat, as a Corrections Officer at a State prison. And he cleans my dad's office on Sun evenings. He is also a very dedicated, involved and available dad.
I have been working with my father-in-law, proof-reading and editing his books, for the last 5 years. At some point's I've worked up to 24 hrs a month, all in the evening after the boys are in bed. We are near the end of our latest book, and I have only worked a few hrs a month recently. Starting last September, I began teaching music two afternoons a week at Brynn's school. While I have never taught before, I enjoy singing and took the chance for both a paycheck and tuition discount when it presented itself.
What have I learned from this? Bottom line: God did not place me on this earth to be a teacher. Now, don't get me wrong, I will finish out this commitment and give those kids my best effort. Next year? Not so much.
And, for my third job ... Dad recently opened an insurance agency in town and I am his office manager/accountant, in the process of muddling though Quick Books. Not to bad in and of itself, however Dad just can't get his mind around the fact that I need to know when he spends money. He can't just write a check and not let me know!!! I work two morning a weeks at the office.
Jon's weekend is on Monday and Tuesday, the days that I work. So, sweet little Iann gets special time with daddy. Jon makes sure that Iann gets to two hours of therapy on each of those days, and then snoozes on the couch while Iann naps. While I work.
Of course, I get to snooze while he is working the other days so I don't begrudge him. Well, not too much!
It is Tuesday night and I worked my 2 jobs yesterday and today. Came home and made dinner both nights, and took Brynn to swim lessons this evening. I am tired. Exhausted even. I look forward to Wednesdays when I have time to recoup, with only one therapy in the morning.
When Jon and I imagined our lives would be like this, we didn't take into account the kids. Their needs for time, love, listening ears, willing feet. Healthy & tasty meals, clean clothes, (relatively) clean home. Time to learn and time to play. Time to rest and time to engage . Did I mention time????
Add into the mix Iann's additional needs. I have a huge guilty weight that I carry around: there is so much more I could, and should, do for him. He is out of therapy so many more hours a week than in it, and what do I do with those hours? I pay bills, clean the house, go to the store, do laundry, spend a little time with my friends, which gives Iann social outlets. All the things that I need to do to keep our household rolling along. I try to do his mouth exercises 3 times a day, and I read him many books - or the same one over and over! And yet I feel like I could do more.
And so I feel pulled. After my 2 recent surgeries and Jon's ongoing back issues, I need to work as much as I do right now. My paycheck's pay the medical bills. And Iann always seems to need something more, something else.
I know God calls me to do my best in everything I do, as unto him. And so I give the kiddos at school the best that I can to instill some music theory into their education. I give the office my full attention and work my 3 hours straight with as few breaks as possible. I do the laundry in the evenings, and clean the house a little every day. I buy the groceries, play with the kids and make the meals with the image of doing all these things with Jesus beside me.
Sure, I whine about it sometimes, and feel that no area really gets what it deserves, but this is the place God has put me for this time. As Jon said today, "Honey, this is how things are right now. They won't always be this way."
But they are for now, and I do what I can to keep my head above water, and I 'just keep swimming.'
And so here we are.
Jon works 6:45am - 3pm, Wed - Sat, as a Corrections Officer at a State prison. And he cleans my dad's office on Sun evenings. He is also a very dedicated, involved and available dad.
I have been working with my father-in-law, proof-reading and editing his books, for the last 5 years. At some point's I've worked up to 24 hrs a month, all in the evening after the boys are in bed. We are near the end of our latest book, and I have only worked a few hrs a month recently. Starting last September, I began teaching music two afternoons a week at Brynn's school. While I have never taught before, I enjoy singing and took the chance for both a paycheck and tuition discount when it presented itself.
What have I learned from this? Bottom line: God did not place me on this earth to be a teacher. Now, don't get me wrong, I will finish out this commitment and give those kids my best effort. Next year? Not so much.
And, for my third job ... Dad recently opened an insurance agency in town and I am his office manager/accountant, in the process of muddling though Quick Books. Not to bad in and of itself, however Dad just can't get his mind around the fact that I need to know when he spends money. He can't just write a check and not let me know!!! I work two morning a weeks at the office.
Jon's weekend is on Monday and Tuesday, the days that I work. So, sweet little Iann gets special time with daddy. Jon makes sure that Iann gets to two hours of therapy on each of those days, and then snoozes on the couch while Iann naps. While I work.
Of course, I get to snooze while he is working the other days so I don't begrudge him. Well, not too much!
It is Tuesday night and I worked my 2 jobs yesterday and today. Came home and made dinner both nights, and took Brynn to swim lessons this evening. I am tired. Exhausted even. I look forward to Wednesdays when I have time to recoup, with only one therapy in the morning.
When Jon and I imagined our lives would be like this, we didn't take into account the kids. Their needs for time, love, listening ears, willing feet. Healthy & tasty meals, clean clothes, (relatively) clean home. Time to learn and time to play. Time to rest and time to engage . Did I mention time????
Add into the mix Iann's additional needs. I have a huge guilty weight that I carry around: there is so much more I could, and should, do for him. He is out of therapy so many more hours a week than in it, and what do I do with those hours? I pay bills, clean the house, go to the store, do laundry, spend a little time with my friends, which gives Iann social outlets. All the things that I need to do to keep our household rolling along. I try to do his mouth exercises 3 times a day, and I read him many books - or the same one over and over! And yet I feel like I could do more.
And so I feel pulled. After my 2 recent surgeries and Jon's ongoing back issues, I need to work as much as I do right now. My paycheck's pay the medical bills. And Iann always seems to need something more, something else.
I know God calls me to do my best in everything I do, as unto him. And so I give the kiddos at school the best that I can to instill some music theory into their education. I give the office my full attention and work my 3 hours straight with as few breaks as possible. I do the laundry in the evenings, and clean the house a little every day. I buy the groceries, play with the kids and make the meals with the image of doing all these things with Jesus beside me.
Sure, I whine about it sometimes, and feel that no area really gets what it deserves, but this is the place God has put me for this time. As Jon said today, "Honey, this is how things are right now. They won't always be this way."
But they are for now, and I do what I can to keep my head above water, and I 'just keep swimming.'
Thursday, March 3, 2011
My tender-hearted, ALL boy, Brynn is six today
It is hard to believe that my little bundle of energy is six today. Talking of energy, we just got home from swim lessons where a friend whose 2 daughters are in Brynn's class said to me "Wow, he is still wound up. Does he ever calm down or sit still?" Um, not so much.
I will post some pic's of his little b'day party up at Chuckee Cheese's soon, however I just want to share what a sweet-hearted boy this bundle of energy really is.
A few days ago I was wasting time driving around town and decided to drive past our old house. I was excited to see a little boy playing outside in the front yard, and told Brynn that he used to spend hours in that little yard.
"I miss that house," he said. "Why did we move?"
"Well honey, we moved because that house made mummy sad." I replied. "That's where we lived when Alex was alive and it made me too sad to live there after he died."
I was expecting him just to accept this and move on to the next question, as he always has in the past. Instead, I heard him sniffling. I looked in the rearview mirror and huge tears were falling down his cheeks.
"What's wrong honey?"
"I'm sad because my brother died."
That's the first time he as really connected with the whole thing.
As mentioned in an earlier post, Jon and/or I have to pin Iann down and straddle him in order to get med's into his mouth. A few nights ago we were having a really hard time and I muttered something about how I felt like a mean mummy, doing this to him. Next thing we knew Brynn was crying b/c we were being mean to his brother. I quickly told him that we really weren't, we were just following Dr's orders.
The next night, he started crying again, thinking that I was hurting Iann. Again, I quickly told him that I wasn't, but that Iann is very stubborn about taking medicine. Jon also took Brynn on his knee on the couch and told him the same thing.
What a sweet, little thing he is. I love him so deeply, more that I ever imagined I could love someone. Sure, he drives me to distraction sometimes with his constant chatter, and unswerving belief that I am a jungle gym, but life without my Brynn - Brynn would be dull, boring and lonely.
I will post some pic's of his little b'day party up at Chuckee Cheese's soon, however I just want to share what a sweet-hearted boy this bundle of energy really is.
A few days ago I was wasting time driving around town and decided to drive past our old house. I was excited to see a little boy playing outside in the front yard, and told Brynn that he used to spend hours in that little yard.
"I miss that house," he said. "Why did we move?"
"Well honey, we moved because that house made mummy sad." I replied. "That's where we lived when Alex was alive and it made me too sad to live there after he died."
I was expecting him just to accept this and move on to the next question, as he always has in the past. Instead, I heard him sniffling. I looked in the rearview mirror and huge tears were falling down his cheeks.
"What's wrong honey?"
"I'm sad because my brother died."
That's the first time he as really connected with the whole thing.
As mentioned in an earlier post, Jon and/or I have to pin Iann down and straddle him in order to get med's into his mouth. A few nights ago we were having a really hard time and I muttered something about how I felt like a mean mummy, doing this to him. Next thing we knew Brynn was crying b/c we were being mean to his brother. I quickly told him that we really weren't, we were just following Dr's orders.
The next night, he started crying again, thinking that I was hurting Iann. Again, I quickly told him that I wasn't, but that Iann is very stubborn about taking medicine. Jon also took Brynn on his knee on the couch and told him the same thing.
What a sweet, little thing he is. I love him so deeply, more that I ever imagined I could love someone. Sure, he drives me to distraction sometimes with his constant chatter, and unswerving belief that I am a jungle gym, but life without my Brynn - Brynn would be dull, boring and lonely.
Tomorrow's Appointment's ...
I am working on another Alex article, but those are harder to write, and take lots out of me emotionally. Sometimes too much. Instead, I will focus this post on what we have going tomorrow.
As you may notice from the "Iann's latest accomplishments" sidebar, he isn't the world's best sleeper. To say the least! Since he came home a year and a half ago there have been many, many nights when he wakes up, and has a really hard time going back to sleep.
We have established a very solid bedtime routine, which we rarely stray from:
Bath time: Sometimes both boys are in there, other times Brynn showers the next morning before school.
Books: Either Jon or I read a few books to the boys while they drink their milk.
Bedtime: Brynn brushes his teeth, we attempt to brush Iann's teeth, and then both boys get into their beds: Brynn climbs up to the top bunk and Iann is put into his crib. Brynn usually falls asleep within minutes of turning his light of, while Iann takes up to 30 mins to settle. He babbles to himself, eventually falling asleep between 7:45 and 8:15.
Then, every night between 10pm and 10:30pm Iann stirs. He lets out a few cries, sometimes a babble or two, and then resettles himself ... most of the time. It is quite rare for him to wake up at this point, but it has been known to happen. I can almost set my watch against this stirring.
His next time of restless sleep occurs between 2am and 2:30am. If I am woken up by his crying, or him doing what Jon and I call 'crib gymnastics,' I know it is between 2 and 2:30am before I even open my eyes. And then he is awake. If left to his own devices he will be awake until about 4:30, when he eventually goes back to sleep. I will then have to wake him up around 7:30 the next morning, so he has time to eat before we take Brynn to school. I usually allow this to happen for one night. If he wakes up again the following night, I go in and give him 1tsp of Benedryl, which will knock him out within 30 mins.
There have been times over the last six months when his sleeping patterns have been awful. I think I am more aware of how bad things get since we got his diagnoses of FX and autism due to my reading that poor sleeping habits are common with these kiddos. His developmental pediatrician at Children's Hospital in Denver has told me that she is willing to prescribe sleeping meds to kids that need it. However, I have yet to convince her to prescribe for Iann. And there have been days when I have practically begged her to do so!
Which brings us to tomorrow's appointment. In my most recent conversation with the Denver Dr she asked if Iann snores. I told her that he is a very loud snorer! She then asked if I had ever noticed him holding his breath while sleeping.
I was bummed, knowing that this might lead in a direction I would prefer to avoid (ignore??). But since honesty is the best policy, I told her that I used to notice that he occasionally held his breath when his crib was in our room. And, that I still notice it if he is sleeping in my bed, when he's sick or has been awake for hours and even Benedryl isn't working.
Of course, she brought up the dreaded snoring induced, childhood sleep apnea. Shudder. At the least, she thinks the snoring might be either waking him up, or the low muscle tone of his tongue is causing it to bunch up, thus blocking his airway, causing him to wake up. All of this is based on the fact that when he does wake up, it is at the same time in his sleep cycle. Sigh.
Our first line of attack is a visit with our one and only Ear, Nose and Throat (ENT) Dr. The same man who just put tubes in Iann's ears about four weeks ago due to chronic ear infections. So, tomorrow's first appointment is to discuss the snoring, and try to determine the size of Iann's adenoids. Which, by the way, you can't see just by looking down a person's throat - even if Iann would cooperate and let him look down his throat!!! Oh no, this might take an x-ray. If they are deemed to be very large, it is out with the adenoids. I truly wish we had known this at the time of the ear tubes insertion b/c the ENT could have done both things at one time. But no, that would be too simple for the CO Millers. Things just don't come that easy for us.
On the bright side, Iann's autism therapist told me a story today about a boy she once worked with. It was determined that his adenoids were large and affecting his sleep, so they were removed. Within a few months, this non-verbal child was talking. She said it wasn't directly linked to the adenoid removal, but more to the increased quality of the child's sleep. Being better rested, he was that able to focus better, and his brain to work more efficiently, thus allowing him to pull all the necessary pieces together to facilitate speech.
Of course, there is no guarantee such a thing would happen with Iann, but a glimmer of hope is always welcome. And, I would prefer another surgery to remove Iann's adenoids, than for him to have sleep apnea, needing to sleep in a CPAP bubble.
The second appointment Iann has tomorrow is with his general pediatrician to discuss the abundant flow of bright green goo from his little nose! It's been going on for about 3 weeks now, so maybe it's time to get it looked at??? I was hoping the ear tubes would stop the constant use of antibiotics, but again, that would be too easy!!!!
And so we are off on the trail to solve another Iann Miller mystery. Wish me luck :)
As you may notice from the "Iann's latest accomplishments" sidebar, he isn't the world's best sleeper. To say the least! Since he came home a year and a half ago there have been many, many nights when he wakes up, and has a really hard time going back to sleep.
We have established a very solid bedtime routine, which we rarely stray from:
Bath time: Sometimes both boys are in there, other times Brynn showers the next morning before school.
Books: Either Jon or I read a few books to the boys while they drink their milk.
Bedtime: Brynn brushes his teeth, we attempt to brush Iann's teeth, and then both boys get into their beds: Brynn climbs up to the top bunk and Iann is put into his crib. Brynn usually falls asleep within minutes of turning his light of, while Iann takes up to 30 mins to settle. He babbles to himself, eventually falling asleep between 7:45 and 8:15.
Then, every night between 10pm and 10:30pm Iann stirs. He lets out a few cries, sometimes a babble or two, and then resettles himself ... most of the time. It is quite rare for him to wake up at this point, but it has been known to happen. I can almost set my watch against this stirring.
His next time of restless sleep occurs between 2am and 2:30am. If I am woken up by his crying, or him doing what Jon and I call 'crib gymnastics,' I know it is between 2 and 2:30am before I even open my eyes. And then he is awake. If left to his own devices he will be awake until about 4:30, when he eventually goes back to sleep. I will then have to wake him up around 7:30 the next morning, so he has time to eat before we take Brynn to school. I usually allow this to happen for one night. If he wakes up again the following night, I go in and give him 1tsp of Benedryl, which will knock him out within 30 mins.
There have been times over the last six months when his sleeping patterns have been awful. I think I am more aware of how bad things get since we got his diagnoses of FX and autism due to my reading that poor sleeping habits are common with these kiddos. His developmental pediatrician at Children's Hospital in Denver has told me that she is willing to prescribe sleeping meds to kids that need it. However, I have yet to convince her to prescribe for Iann. And there have been days when I have practically begged her to do so!
Which brings us to tomorrow's appointment. In my most recent conversation with the Denver Dr she asked if Iann snores. I told her that he is a very loud snorer! She then asked if I had ever noticed him holding his breath while sleeping.
I was bummed, knowing that this might lead in a direction I would prefer to avoid (ignore??). But since honesty is the best policy, I told her that I used to notice that he occasionally held his breath when his crib was in our room. And, that I still notice it if he is sleeping in my bed, when he's sick or has been awake for hours and even Benedryl isn't working.
Of course, she brought up the dreaded snoring induced, childhood sleep apnea. Shudder. At the least, she thinks the snoring might be either waking him up, or the low muscle tone of his tongue is causing it to bunch up, thus blocking his airway, causing him to wake up. All of this is based on the fact that when he does wake up, it is at the same time in his sleep cycle. Sigh.
Our first line of attack is a visit with our one and only Ear, Nose and Throat (ENT) Dr. The same man who just put tubes in Iann's ears about four weeks ago due to chronic ear infections. So, tomorrow's first appointment is to discuss the snoring, and try to determine the size of Iann's adenoids. Which, by the way, you can't see just by looking down a person's throat - even if Iann would cooperate and let him look down his throat!!! Oh no, this might take an x-ray. If they are deemed to be very large, it is out with the adenoids. I truly wish we had known this at the time of the ear tubes insertion b/c the ENT could have done both things at one time. But no, that would be too simple for the CO Millers. Things just don't come that easy for us.
On the bright side, Iann's autism therapist told me a story today about a boy she once worked with. It was determined that his adenoids were large and affecting his sleep, so they were removed. Within a few months, this non-verbal child was talking. She said it wasn't directly linked to the adenoid removal, but more to the increased quality of the child's sleep. Being better rested, he was that able to focus better, and his brain to work more efficiently, thus allowing him to pull all the necessary pieces together to facilitate speech.
Of course, there is no guarantee such a thing would happen with Iann, but a glimmer of hope is always welcome. And, I would prefer another surgery to remove Iann's adenoids, than for him to have sleep apnea, needing to sleep in a CPAP bubble.
The second appointment Iann has tomorrow is with his general pediatrician to discuss the abundant flow of bright green goo from his little nose! It's been going on for about 3 weeks now, so maybe it's time to get it looked at??? I was hoping the ear tubes would stop the constant use of antibiotics, but again, that would be too easy!!!!
And so we are off on the trail to solve another Iann Miller mystery. Wish me luck :)
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