Our Easter holidays were definitely eventful... Poor little Harrison got RSV coupled with a double ear infection and Hunter broke a bone in his foot while jumping during his Little Gym class. The on-call doctor and I got to know each other REAL well over Easter :/
But we are almost all nursed back to good health!
This easter bunny picture was right after Harrison coughed so much he threw up his bottle.... BEFORE we knew he had RSV.
And this Easter Day picture, well it wasn't exactly what I had in mind but that's what I get when I try and force a decent picture out of the two of them!
My little champ in his boot for the broken bone. He has already mastered running in it, although I giggle watching him do it.
This past Sunday, April 27th, 2014 we celebrated Hunter's 2nd hearing birthday. I posted the picture below to my instagram stating how surreal his hearing world is to us. His language, his personality, his energy... I attribute it all to that one tiny miracle we were able to provide for Hunter. Without his CIs, I do not believe Hunter would be the outgoing, funny and blossoming boy he is today. We are so thankful for the gift of hearing.
Good morning! It did take a while for me to get the assessment results for Hunter's transition from Early Steps to the school system, but it also took me a while to gather my thoughts and summarize the information into a post that normal people could understand!
Anyway, Hunter's "exceptionality" is listed as hearing impairment, which is probably the only reason he still qualifies for services because they have tightened the reigns on kids they can service, but because of his diagnosis he will always be eligible, whether his assessments says so or not.
The assessment consisted of a social worker, speech pathologist, educational diagnostician and an audiologist. Using my answers to various questions, the team selected toys and activities to incorporate in the play sessions. He was encouraged to engage in self-selected and adult-structured play. (Side note: He was just excited that they had 3 vacuums to play with!) Observations were made of Hunter playing alone, with one other child and with adults for 2 days.
So skipping over all the technical language, Hunter's adaptive behavior composite indicated that his behavior skills were within the adequate range of scores when compared to children of the same chronological age level. His communication, daily living skills, socialization and motor skills were all adequate.
The report indicates that Hunter is a delightful and talkative preschooler and particularly liked playing in the housekeeper center (we are about to put him on payroll at home!). He labeled many of the plastic food items and enjoyed stringing beads and successfully counted to 15, skipped 16 and went on to twenty.
He used common objects functionally, activated toys, nested cups, completed a three-piece foam board, remembered placement of objects removed from sight, sorted by size and color, and also matched other objects to their pictures. When speaking, he used personal pronouns and plurals, stated his age and name and indicated he was a boy when asked. He shared with the other child while playing, imposed actions on dolls and combined objects and sequenced actions in play. He pointed to pictures of common objects and actions, labeled pictures in books, verbally responded to yes/no questions and pointed in response to those questions about personal needs. He demonstrated an understanding of the quantitative concepts of one, two and all and the qualitative concepts of big and little.
When these skills were recorded on the Cognitive assessment of young children, Hunter obtained an age equivalent of 39 months which corresponds to a 75% rank, which is average for his age. (and we are so proud of that entire 75% considering he couldn't hear his entire first year of life, so he has really caught up quickly!)
Ok this report is 7 more pages, so I will try and summarize a little better!
Hunter's total language score falls at 104 which is .27 standard deviations above the mean for a child Hunter's age, indicating high average language abilities.
There was a word repetition task which yields age-appropriate cut off scores to determine whether further articulation testing is needed and Hunter correctly produced 18 out of 23 attempted phonemes indicating typical articulation skills for a child his age. His conversational speech was easily understood by both familiar and unfamiliar listeners.
In the area of Nonverbal Communication Skills, Hunter responds to and uses varying facial expressions, understands outreached arms to request a hug and uses varying tones of voice.
In the area of Conversational routines and skills, Hunter waves hello/goodbye, looks at the person whom he is speaking, joins play groups, and initiates and maintains conversations. He often maintains attention while another person speaks, and sometimes waits until the end of a person's sentence before speaking, says "excuse me" and stays quiet when expected to.
In the are of asking for, giving and responding to information, Hunter gives and accepts hugs, asks for help from others, asks questions and offers to help others. He sometimes stops a behavior when asked to. (haha)
Listed Strengths:
1. Displays high average communication skills
2. Displays average early learning abilities
3. Exhibits adequate motor abilities
4. Attentive, cooperative, friendly preschooler
5. Independent in self help skills
There was a summary at the end, which is what I probably should have just included in here, but it basically recaps the above information.
We could not be more pleased with the results of his assessment. 3 years ago, we only dreamed Hunter would be able to perform as other kids his age do. And today, he's right in line beside them performing up to par.
Thank you to everyone who has helped us and Hunter along our journey. We could not have done it without the love and support of everyone around us. Hunter is one lucky little boy, and we are even luckier to be his parents.
As another side note, we were so excited that our old AV Therapist "Aunt Shelley" came to Lafayette and we had breakfast with her Saturday morning. She is so sweet and refers to Hunter as Smarty McSmarty Pants!
And here is a picture and a few videos of Hunter today at his 3 year check up! He is in the 97% percentile for height and 88% for weight. Yes, he's big :) the first one was a series of questions to check his milestones, sorry about the quality, it didn't transfer well. The second was just the nurse checking his blood pressure
And me and my boys... I couldn't leave this one out! I count my blessings every.single.day.
I've been a little emotional lately. Hunter is turning 3 this week and as I recently posted this picture below to Instagram and it brought back so many memories of Hunter's first birthday.
The world was completely silent to him. I just can't imagine that feeling to anyone in the world, and the last person I wanted that for was my child. He was a happy baby and obviously never seemed very bothered by it because he didn't know he was supposed to be able to hear. But I knew. And as a mommy, you just want to give your babies the world, but sometimes God has other things in mind. His first birthday was such a big deal for us. It was bittersweet because it meant he was finally of age to get his CIs, but as our entire family gathered to sing Happy Birthday, he couldn't hear a single word of it. I remember being grateful at the time for a healthy baby boy who would soon receive the gift of hearing. But at the same time, a little piece of me wished he could hear the world around him and not be any different than any other 1 year old.
We had Hunter's 3rd birthday party at The Little Gym this past weekend and he had an absolute blast!
Here are a couple of short videos of everyone singing him Happy Birthday (one of the ten times!) and I'm not sure who loved it more, me or him :)
I apologize for not posting in a while... I've recently been called out so I promise I will be posting more in the future, ha!
I just caught up on a fellow CI mom's blog that I follow and finally got the update I have been looking for since before Harrison was born. This girl was pregnant for her 2nd child and (like me) had not had much time to post after the baby was born. Finally, the update I was looking for. It wasn't the outcome I was hoping to read, but it made me even more grateful to know that our sweet baby Harrison can hear. Her second child did in fact fail the newborn hearing test and the ABR test two weeks later. Wow. What a rush of memories that came over me from when Hunter was born. I can't imagine going through that again. It's a long hard road with a deaf child, but Usher Syndrome on top of that, the dark unknown future that lies ahead for Hunter, that's what would have killed us to have to face with Harrison. Knowing that another child's vision could be compromised would have been devastating. But we went into it knowing there was a 25% chance, so we would have welcomed him with loving arms, just as we did with Hunter. And the second round of CIs would have been a breeze compared to the first with Hunter. But again, we are forever grateful.
To say things have been busy lately is an understatement. Harrison had 2 cousins born within 3 weeks of him, so we have been visiting a lot, and everyone is getting baptized right now, including Harrison next weekend. Going back to work was not a huge adjustment for me. I work better on schedules and wasn't great at getting myself up and presentable when I was on maternity leave.
Here is a picture of Hunter and Harrison on their first day together at the sitter. Hunter was so proud to have Harrison at "work" with him! (He always says he's going to work at Nini's since Mama and Daddy have to go to work!)
Everyone wants to know how Hunter is adjusting to not being an only child anymore, and knock on wood, we couldn't ask for a better big brother! The first month or so he didn't pay Harrison much attention, and we were perfectly ok with that! We didn't force Harrison on him, and he warmed up in no time. He wanted to help feed and now every night when I ask Hunter if he's ready to bathe, his reply is always "I take a bath with Harrison?" So he has done really well. We still have our normal overly dramatic moments with him, but for the most part they are few and far between.
(Hunter loves playing with the phone at my mom's house and didn't want to leave Harrison out!)
Here are a few other recent pictures of the boys.
Hunter turns 3 in exactly 2 weeks. I can't even wrap my head around that! It is so true that some days seem to go by so slow yet the years seem to go by so fast!
Harrison will be baptized next weekend at St. Joseph's Catholic Church in Milton near our house. We have an heirloom outfit that my cousins and I wore for our baptisms, and now all of our children are wearing it too. Harrison is next and I'm so grateful for this tradition :)
The following is a video of Hunter showing Harrison how to sign the ABCs. And this video is the ultimate preview of a beautiful sibling relationship in the works. This is why we had another baby, this is what it's all about for us as parents.
I will continue to try and post to the blog more updates about Hunter's progress, but we haven't had any real news to share lately except that he is still soaring with his language and vocabulary skills. We are in the middle of trying to sell our house and closing on the construction loan of our future home in New Iberia, so we are keeping ourselves pretty busy these days!
Hunter did go for his evaluation to transition from Early Steps (which ends at Age 3) into the school system. He went to big boy school and played in a classroom for 2 days, an hour each day, while 3 different ladies evaluated him. He was ALL over the place because there were SO many toys all around him, but did pretty well for the most part. We have a meeting tomorrow to get the results from the speech therapist, so I will relay that information as well.
And my daddy, Hunter and Harrison's Pappy, turns 60 this weekend. My daddy is the perfect combination of patience and motivation. He has worked tirelessly for everything he has and always made time to support everything my brother and I pursued.
On Monday, December 9th we welcomed into the world our second baby boy, Harrison Charles. With his long blonde hair and big blue eyes, it was love at first sight. He resembles Hunter to the T when he has a hat on, but that long hair is what really sets him apart. Every nurse and visitor in the hospital commented on his hair, and I have to say I absolutely love it as well.
As most of you know, every child we have has a 25% chance of having Usher Type 1C. Being profoundly deaf at birth is the first sign of the syndrome. But the morning after Harrison was born, a sweet old man with white hair walked in our room around 7:30am to administer the newborn hearing test. It caught Blair and me completely off guard, but I think it was a good thing that we weren't waiting all day for the test. We informed the man that our first son did not pass his newborn hearing screen and how important this test was to us because it would pretty much tell us whether Harrison has Usher 1C like Hunter. Needless to say, he passed with flying colors :) Our baby boy Harrison can hear and will not have have the cloud of Usher Syndrome over him for the rest of his life. The decision to have another child was a huge one for us, but we put it in God's hands and were willing to accept another child with or without Usher Syndrome. But thankfully, for his sake, passing the newborn hearing screen is a pretty good indicator that he does not have it. We will most probably retest his hearing at 2 months, but we have definitely noticed differences in how he reacts to sound as compared to Hunter.
And big brother Hunter has been adjusting a little better than expected. He still has his 2.5 year old moments which are harder to deal with now with a new baby at home, but he has been ignoring Harrison for the most part. Which I'm ok with! I think once he gets a little older and is able to interact, Hunter will show more interest in his baby brother.
(Above photo by Nicole Bell Photography)
With a new baby at home it's hard to post when all I want to do is sleep, but I will try my best to keep up!
I have to say that the following pictures paint a perfect and beautiful picture of my family of 3. (A special thanks to Kent Fleming who is always so patient and does an amazing job!) The day we took these pictures, waking up from naptime was rough, but we got through it. After half an hour of asking him to smile and him responding in his "whiny ways" he finally came around.
We have a lot of rough moments with this age. It's not easy. And it's not because he's a child with special needs, it's because he's a child. He has good days and bad. Sometimes he wakes up on the wrong side of the bed, and the next morning you could swear he's a totally different child.
Blair and I are still learning what works and what doesn't. We are having to step out of what we know and explore other options. And what works one day doesn't always work the next. He keeps us on our toes in more ways than one all waking hours of the day.
But I wouldn't change a single thing.
The gift of being a mother is something that is immeasurable. The up side is that the good times outweigh the bad. And when he is in a good mood, you don't just have a good time with him, you have a great time. He loves an audience, loves to entertain, and loves attention!
He loves to talk, he loves to dance (well jumping is his form of dancing) and he loves anyone who is willing to do all of that with him!
Mama has had to lay low lately on the dancing, but only because I am about to experience again the joy of becoming a mother to another baby boy. And it makes me smile from ear to ear. I can't wait for my heart to be twice as big with love from another angel being born into our family.
Since Hunter has been attending AV therapy every 2 weeks for the past few months, it has taken a couple of months to issue and score his progress tests, but we finally got the results back last week and I wanted to share them.
Hunter was issued a general language test, an articulate language test, a receptive vocabulary test and an expressive language test.
For every language test, 100 is dead average. Anywhere between 85
and 115 is average. On the articulate language test (which is expressing oneself easily in clear and effective language), Hunter got a 93, which is in normal range. He got 28
errors which is perfectly normal for a 2.5 year old. And that's a normal hearing 2.5 year
old, not a 2.5 year old born deaf.
His vocabulary test, the receptive vocabulary (vocabulary
that he understands using pictures, and what he understands from what other people
are saying). 100 is average and he got a 108, which is 8 standard points above
average.
Then there is expressive vocabulary (show him a picture and say what is
this). 100 is normal, he got 121, 21 standard points above normal, so he did
exceptionally well on that.
Last test was overall language, it’s a little broader than
just vocabulary. It’s his ability to put words together, grammar, sentence
structure, just a more broad view of his whole language development. It involves auditory
comprehension and his expression, what he’s able to produce himself. His
understanding, expression and total all fell above the average line. He got 111,
11 standard points higher than normal so all of his scores are looking very
good.
Hunter's AV therapist tells us that he seems to be right on track.
There are certain letters that he would say at the beginning
of a word, like a w for an r, which is normal for a 2.5 year old. He says w for
L. But those don’t development until much later. At the end of the word he
would do a k for a g, which is normal as well. Nk for ng, sh for ch, and t for j at the
end of the word is appropriate for his age.
Even though we got the great new that Hunter has "graduated" from AV therapy at this time, we agreed to have a couple more sessions in order to
transition his therapy sessions to take home therapy ideas to keep up with
Hunter at home.
Shelley (our original AV therapist) called in to talk about Hunter’s progress, and she
said Hunter’s vocabulary scores are probably her highest ones yet. She
acknowledges our support system and all of the people in Hunter’s life who are
so involved in his progress. She complimented us getting on board right out of
the gate, not hesitating about the implants and the therapy, and making it a
part of our everyday lives. Almost every person in our family has joined in on these sessions
and they know what kind of conversations to have with Hunter and the questions
to ask him to constantly keep him moving forward. And even though Hunter’s
sitter wasn’t 100% on board with strictly AV therapy, she has really come
around and pushed Hunter further than any of us.
She did warn us that testing of a 3.5 year old varies
greatly from a 2.5 year old. A 2.5 year old should understand around 500 words,
and at 3.5 it more than doubles to around 1200+ words. She said not to get
comfortable that he is all caught up and to keep reading to him and keep
teaching him. She said a 2.5 year old and a 3.5 year old have totally different
expectations.
They want us to know what to expect and to know what to look
for when we are reading to Hunter every day so they will give us the tools to
know what to expect. She doesn’t expect him to move down from the normal range,
but if he does it may be because of how much they expect out of a 3.5 year old.
She just keep stressing not to stop doing what we are doing.
One thing going for Hunter is that he has a fantastic
memory. When we read him books, the following week he is reading bits and
pieces from the book back to us. We can tell he isn’t actually reading the
words because he's not even looking at the words, but he remembers bits and pieces from each page just from the repetitiveness
of hearing the book for a week straight every night.
I always get nervous when people ask me where Hunter will be
going to school and when he will start. #1, he’s my baby and I’m NOT ready for
him to start school. Or even a preschool at that. A lot is riding on Baby
Harrison and whether or not he is hearing. As most of you know, our 5 year plan
includes building a house in New Iberia near my parents and Blair’s. But if
Harrison needs implants like Hunter, we would like for him to stay at Nini’s
for at least 2 years so that she can help us get him where he needs to be. She
is irreplaceable and 100% worth staying in Youngsville for that period of time
if need be. Being near family is super important to Blair and myself, and we
know we will get there eventually, once we make sure our children are where
they need to be. If we do stay in Youngsville for another few years, I would
like to look into putting Hunter in a preschool starting possibly in the fall.
But these are all factors that will be decided after Harrison is born. Again,
he has a 25% chance of having Usher Syndrome like Hunter, and whether or not he
passes his newborn hearing screening in the hospital will tell us, obviously,
whether or not he is deaf, but will paint the bigger picture as well as to
whether or not he will have Usher Syndrome.
Shelley also mentioned an amplification system that a lot of
preschool teachers use when they have a hearing impaired child. It’s a very
little amplifier that makes a world of difference to bring the teacher’s voice above
everyone else’s in the classroom. It’s a little uneasy that we have to start
thinking about this, but it’s a part of the Cochlear implant process and just
comes with the territory. As amazing as this device is, it’s still a device.
It’s not a natural form of hearing or anything close to that. It’s Hunter’s way
of hearing, and a classroom setting is not something he has had to adapt to yet
so it’s going to be a way for Hunter to have to really concentrate on the
teacher to be able to hear what’s coming from her mouth with a lot of
background noise going on at the same time. He has always been in a smaller
setting (in-home sitter) with not a lot of children which was exactly what we
wanted when he was learning to hear and speak. The next step, is learning how
to hear in a crowded environment on an every day basis. He will have to learn to differentiate the
teacher’s voice from other children’s voices, as would any hearing child, it
just may take a little longer for Hunter to master this skill that seems second
nature to his hearing peers.
I will be posting more soon, including recent family pictures :)
Sorry it has taken me so long to post an update, but as always, thank you for being a part of our journey!
Today, September 12th, my baby boy turns 2 1/2 years old. It's crazy to say he's 2 1/2 when people ask how old he is... bitter sweet I guess. We got some good news recently from our AV Therapist that Hunter does not need to go to therapy in Breaux Bridge every week anymore. We will cut back to every other week and make sure Hunter is staying on track for a few months before possibly taking him out altogether. He really has been doing so well, but I am scared that when he turns 3 and isn't eligible for Early Steps speech therapy anymore that he may start to get behind. Therapy twice a week has been a part of our routine since for almost a year and a half now, so another bitter sweet thing to be able to graduate from weekly services, but a little anxiety as to how Hunter will keep up with others his age.
Here are a few fun facts about our big boy that some may not know:
Hunter's favorite food lately has been Donuts! We pass there on the way home every day and I have to remind him that Donuts are only for breakfast, and only once a week!
Same goes for Icees, he asks almost every time we pass a gas station, but we only get Icees on Fridays!
Hunter is a little OCD (if that's the right way to put it). He HAS to be the one to press the garage door button every time we leave the house and every time we get home. (And requests the same at every house we go to) If we accidentally forget we have to close it again and then let him press it to re-open it. In the mornings, he presses it near the door and we run to let him "push" it open and tell him how STRONG he is!
At night, when we tuck him in to bed (sans ears) he has to have his barney pillow pet, his mini pillow under his head, his santa in one arm, his bear in the other, and all of the other random stuffed animals on top of the two blankets he is tucked in with. Then he is still yelling for his bear, which we consistently point out is in his hands and he nods, but still yells every time we walk away. It only lasts 5 seconds, don't worry. Then in the mornings, if he is already awake when we go in there, he has to hand us every single stuffed animal and blanket and pillow and then expects us to have two hands left to get him out. I have started dropped most items to the floor when he's not looking. Weird cookie. ;)
Hunter LOVES swimming. He is quite the dare devil who isn't afraid to jump in when we aren't looking or flip into the baby pool all by himself. I don't know what we will do on the weekends when it gets too cold to swim!
He seems to understand (I think) that he will have a baby brother named Harrison. At night we bless Hunter, Mama, Daddy and Baby Harrison and occasionally he asks him to wake up and come out to play. He also points to my belly and says- Mama has baby! It will definitely be interesting to see how he reacts in December when Baby Harrison really does make his arrival!
Hunter is also just like any other 2 1/2 year old boy who can get pretty defiant when he doesn't get his way (or when he just decides to be). It's been a challenge, but this too will pass! As much I want him to grow up and move past this phase, this age can be really fun (again, when he wants to be!)
Have a great rest of the week and weekend, thank you for following!
As most of you know already, we are helping throw a fundraiser with the Eye on Jacob Foundation to raise money to support research to find a cure for the vision loss aspect of Usher Syndrome. This event will include a silent and a live auction with some things you won't want to pass up! Various trips to places such as Hawaii, Alaska, Las Vegas, Miami Beach and Gulf Shores will be auctioned off so you don't want to miss this! Please see below for the when and where. For tickets to the event, you can go to www.eyeonjacob.org and for the Little Gym event and the Raising Cane's event you can just show up!
Thank you all for your continued support for this great cause!
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