Thursday, September 6, 2012

We planted a seed and now we watch her Blossom

*Note: This is going to be a long one, but really full of lots of things on our journey with Kylie...enjoy :)

I feel like I have shared lots of fun new things Kylie has been doing on my FB page, and now I think it is time to try and put as much of that together here as I can.

So, I remember being just devastated when we met with our developmental was following several emails to our Developmental and Behavioral doc about how Kylie was just having some extra tough times with some social situations and I just didn't know what was going on.  I know often times when kids are developing and hitting milestones, there is often a hiccup of sorts in the sensory system and things can be tough for a week or so and then we get back on track with things or we have a new normal to adjust to.  Evidently that was not so much the case this time.

Back to the apptmt with the developmental ped...the first thing out of her mouth was to discuss medication options.  I don't know what I really expected to happen out of that visit, but meds was definitely not on my mind.  Me being the emotional one just started to cry...nonstop for a bit too.  The doc just stared at me like something was wrong with me for crying...sorry lady, but so much of this was not in the picture I had for our family, and meds wasn't in that picture just let me cry and deal with it.  Good thing Matt was there, he was able to talk to the doc for a bit, and then once I regained my composure, I was able to chat with her about some stuff too.  We told her she gets OT at school for her sensory issues...also triggers for some of her anxiety.  She said that 30 min once a week wasn't nearly enough to make an impact on Kylie, and she suggested additional OT. 

We left with a plan to try some OT through them, and let's just say that I wasn't impressed with the OT there, and the fact that each apptmt was a month apart...huh, so I would say the 30 min she was getting once a week at her school was looking much better than what was available through them.  We nixed that pretty quick.

I just felt like what we were doing with her and what she was getting from school was leaving us all at a standstill with things.  Lots of repeat exposure in small doses definitely helps, but you can only drive to the doctor's offices and all the things I do with her in the community so many times, before it just wears on you...especially if there is no progress, or very minimal.  It was hard on my heart for sure, just broke me to see things so difficult for Kylie.  It wasn't the Kylie we knew, and we wanted everyone to know our Kylie.

I had contacted her Developmental and Behavioral doc and he gave me the name of the only doc in KC that he would recommend to treat Kylie.  Let me tell you, coming to terms of accepting that this was something we needed to do was not easy.  I felt like I was giving up, or that I wasn't doing enough for my girl.  She needed it more than anything.  The apptmt itself just reinforced why we were there.  Here is the email I sent to her Developmental and Behavioral doc to let him know how the apptmt went.  It was on May 15th.

Anyhow, things were going well, and then Dr. Kruger took out some things to check Kylie with and then it went down hill from there.  I did not prepare Kylie for that, but at the same time, she needs to be able to allow those things to be done.  Maybe be a bit anxious, but not have the meltdown and just loose it the way she did.  Dr. Kruger got the nurses to come and try the height and weight first, and that did not go over so well with Kylie when they came by.  I told her that I could stay in the room or go with her and she was able to tell me to come with her.  Once we got to the room they asked her to take her shoes off, and I think that scared her and she was wondering what more would happen.  She was attached to me, and would not stand up and just screamed so much.  I was getting a bit annoyed with the nurses because they kept saying they didn't do any pokes or owies back there.  I told them that is not the reason at all, she hasn't had shots since she was a baby.  One of them said, oh so she just never goes to the doctor...umm, not even close lady.  Anyway, it's not so fun going through that with Kylie and more so when you have people that are just ignorant and need to keep their mouth sealed.  They tried to get a head measurement first, and I forgot how that has always bothered Kylie...I think she is extra sensitive on her head from all the EEGs and things.  It was during that time while I had her hands held down through all the screaming when she let out a cry/scream that I had never heard from her before and it will stay with me for a long time.  Then we had to do the weight, and she was just attached to me so much, because of how badly the head measurement upset her.  They weighed us together and then they had to get just my weight, so they took her from me...okay, so they had to pry her from me and once again a scream that I have never heard from her before.  I know this all had to be done for the meds and all, but that will last with her and I for quite a while.  Each time she let out those horrid sounds I started to cry, I tried to be sure it was never when she was facing me, because I know that doesn't help her, but my goodness it was a hard time for me.

Having gone through that apptmt the way it went just reinforced why we were there, why we needed to be there to help Kylie.  I am just in tears now, as reading that has given me flashbacks from that apptmt and how heart breaking it was to be there, and hear those screams from my sweet girl.  No child should ever feel that afraid of so many things in their environment.  So yeah, I held Kylie close to me to help calm her and I silently cried right along with her as we were back in the room with the doc.  Needless to say we left with a script for meds to help with Kylie's anxiety. 

It was a day or two before I filled the script, and that first day of giving her the meds made me absolutely sick.  We never buy juice for her to drink, just milk and water for her.  So I thought to put it in juice and give it to her in the morning...a perfect treat to wake up to...a treat spiked with some medicine.  I can tell you that I had to leave the room after I gave her the juice..I just couldn't even watch her drink it and I felt sick knowing that she had no idea that she was getting some medicine.  Ha, then day two came, and I accidentally knocked the cup over...great, now the evidence and my guilt of giving it to her was all over the kitchen floor...not so fun.

She has done extremely well taking is quite potent and smells like mouth wash, so we had some flavoring added to it...bubblegum, so now it is bubblegum mouth wash :)  So are we glad we made that leap? 100%.  Kylie made improvements within a couple days from taking the medicine.  I emailed her doc every time she did something that she wasn't doing before, and here are some of the messages I sent him.

May 21
I wanted to let you know that today at school, Kylie talked to one of her classmates in the lobby area before the teachers came to get the kids.  She has never done this before!  Also, it was her special day, so I got to be there.  I am glad, because even in my presence Kylie did much better than I have seen her do all year when I have gone to school with her.  She was still anxious and uneasy at times, but definitely improved.  At snack time, the child that has the special day has to ask each classmate, one by one, what they would like to have and then the receiving child says thank you, and then the other says your welcome.  Kylie stood tall and spoke clearly and loud enough to be heard!!!  This was huge, because she often is all cowered down and you can barely hear her speak or even understand what she is staying.  She has only been on the meds 5 days and I was able to see an improvement...hooray!

June 13
We met with a family from our church group last Saturday and served dinner at the Ronald McDonald House in Children's Mercy. They have two girls, 12 and 8, and Kylie has been doing pretty well with them whenever we meet. Anyhow, it was a great feeling to not have to worry how Kylie was doing, or even wonder where she was at, because she was having a great time with both girls. I even saw her initiate a hug to each girl when we were cleaning things up. It was truly wonderful to see that! She can do all the things needed, it just needs in a smaller group. Whenever we go to the park, and this was even prior to trying the medication, she would go up to kids and ask them their name and if they wanted to play with her. Before long she would be running around with new kids, and even holding hands. I attached a pic of the younger girl from our church group holding her. Kylie was really smiling too! 

June 26 (Dr Ghosh at the Cleveland Clinic)
Kylie did Extremely well at the doctor visit today!  We were running late, so we did not have all the acclimating time in the waiting area...just in the car.  She hopped on the scale and did the height...both with minimal hesitation :)  She was definitely uncomfortable as soon as we were called back, but she held back the tears and stayed strong.  She tried to go to the floor when we went in the room, but we told her to choose to sit in the chair closest to the doctor by herself or on a lap.  She opted for the lap.  She was calm on my lap while the doctor did the physical evaluation...rockstar! We brought her doctor kit with us...just like last year.  She also brought in her new doll that Papa Joe got her...she used the doll as her patient.  She then listened to the resident doctor's heart (female), and then Matt, the doctor, and mine.  It was so great to see this!  What did the trick was talking to the doctor about the animals we saw at the Cleveland Zoo earlier in the afternoon.  That was the key to getting her to open up, and we didn't have to prod too terribly hard for that to happen :)  She even left the room with the resident to go get some stickers and a sucker..he said that was just a test, and she passed!  It also gave us a chance to talk to him about how she does with things, without her being present and not having to spell everything out.  He did note the shyness/anxiety in her report.  He said that he was "pleasantly surprised" with how well she was doing in regards to her social development in comparison to last year's visit.  He said that is due to all of our hard work...Matt pointed to me and I nodded :)  Kylie gave high fives and knuckles on the way the doctor too! 

I wanted to let you know that Kylie is doing really well.  She actually waved and said hello to the bakery guy at HyVee, and Matt got her a hot wheels car as a reward.  He said the woman at the checkout handed it to Kylie after she scanned it and she took it with no hesitation!

She will now tell people when we are out to eat what she wants...still quiet, but they can hear and understand her. Or if we are at the checkout and the cashier scans a toy or something, she will say "yes" if they ask if she wants to hold onto it.

She now jumps at us to hug us...something we never thought would happen. She even did this to a friend that came over...this is someone she has only met once before at a park, and the lady will be watching Kylie tomorrow evening (Kylie is very excited for her to come too!).

Here are some moments captured in pics of how great she has been doing!

Kylie loves, loves the Royals...all thanks to her dadda!  It just so happens that the Royals donate tickets to families that have children that attend the Lee Ann Britain Infant Development Center, where Kylie attends school.  We signed up for some tickets the beginning of June or so, and we got to see some of Kylie's classmates and teachers there, and yay...they got a chance to really see Kylie!  The Royals mascot Slugger even came right up to her to give her a five and she did it!  Oh my gosh it was incredible to see her make that contact and smile so big after she did it!  Her peers, and director of the score were in amazement as they watched her do it...oh, the happy tears!


One day while Matt was working, Kylie and I went to a local store where Billy Butler was signing autographs.  I can tell you sitting in line with a 3 yr old for 3hrs is not so time, I will take back up and pack more snacks, because she ate them all within the first 30 minutes or so.

While she waited, she also colored a picture for Billy to have, because she knew he would like it :)  She actually walked up and handed it to him, and then she did go to the floor, but she got right back up when I asked her to (In the past, she would instantly go to the floor, even when there was yet to be any social contact, because of her anxiety. Now if it ever happens she can get back up when prompted to).    She did a great job, and Billy told her he would hang her picture in his locker along with all the ones from his 3 yr old :)


Here she is with the ball that she had Billy sign for her...she was so proud and told everyone she saw that she met Billy Butler!
There is this sweet teenager at our church, and Kylie just loves her to death.  We went to lots of her soccer games, to watch her amazing skills and give Kylie some more social exposure to friends from our church.  It was great because she ran around a lot...she feels safer and more in control of things with her anxiety if she is outdoors...easier to escape from things I suppose.  Anyhow, it was many, many games later when Kylie finally hugged her, and that was incredible!  We went to celebrate this wonderful girl's birthday, and here you will see Kylie walking hand and hand with her as we were heading to leave.  This holding hands with someone else is also another HUGE step!
This was the first year that Kylie was able to do VBS at our church, and here she is at the carnival to kick off the event.  OMG, she is letting someone paint on her hand!
She is on the floor in the back row with the pink bow at VBS.
She took 2 sets of swimming lessons and passed them both!  I took her to the pool every day for about a month and practiced with her, and she was amazing!  She went from getting so upset to get her head or face wet, to going under all by herself!
Kylie was even in a wedding and she looked so beautiful in her dress...our little princess!  The kids rehearsed holding hands together down the aisle, but the wedding coordinator at the church tried to push the little guy up and that was it for him.  The older girl just started to go down by herself, and then Kylie followed, way to just do it on her own! 
Kylie was happy when the wedding party stopped to get pics at one of her favorite parks.
Kylie loves, love to dance, and she was on the dance floor pretty quick, and look at this...she found an older boy to dance with!  Need I mention that she danced with him for like 5 songs straight or so.  He pulled his hands back and wiped them on his pants, and before he could even react, she grabbed his hands for another
Kylie holding hands with a friend...this girl always tried to hold Kylie's hand, and now she was ready to do it!
I took Kylie skating for the first time, and she loved it and listened so well to the instruction they gave the kiddos.  In the past, trying new things was almost a nightmare...she was so anxious and stressed and just instantly melted down...but that was the past :)

This I love more than anything!  Usually at bedtime Kylie will sit on the couch with us for a few minutes before Matt puts her to bed.  She has not only gotten comfortable with laying next to us and cuddling, but now she is trying to use it to her advantage...she says she can't go to bed because she needs to stay down stairs and cuddle with  I have waited all too long for this to happen, so I totally give in and let her!

In addition to all of that, while we were in Ohio Kylie was a lot more affectionate with my family and I know they just loved that! (Yes, I know I still have lots to post from that trip...a work in progress, right?)  She would just go up to them and give them hugs, and sat right next to them while they read her books.  We both loved watching her just blossom right in front of us and we are so glad they got to really see Kylie!  My dad even said she was like a different kid from the last time they saw her...well, that would be because of the bubblegum mouthwash flavored stuff we put in her juice :)

Matt's mom and grandma have both noticed a difference almost instantly.  Kylie and Matt visited his grandma and I guess Kylie ran up to her and just hugged her with no prompting...she looked to Matt and said she has never done that before.

She is just doing so many new things, and trying new foods too...she has some issues with feedings and I was surprised to see that now if we ask her to try something she will not meltdown, and she may say no, but once prompted to try just a bite, she will do it!  She now eats salsa with chips, peanut butter, yogurt, toast, string cheese, grilled cheese, jelly.  It is incredible! 

I know there is so much I am probably forgetting, but was the toughest decision we had to make, but it was the right one for Kylie.  She is on the lowest dose she can be on for her age and weight, and we discussed that it would be temporary to give her the added exposure and experiences to build that confidence and lessen the anxiety.  Ha, I won't say that it has come with no hitches, because her doc warned us that once she started having less anxiety we would ask if we could have the child back with all the  We have dealt with her not listening, and being more oppositional and refusing to do things...she has found her inner voice and is sure using it!  We have found that she is getting into more things and doing things that she knows she is not supposed to be using her markers on her toys and the wall :)  So even though having an almost 4 yr old sometimes behaving like a 2 yr old is not fun, we are so grateful for all the progress she has made and the great docs that are working with us.

1 comment:

Rochelle said...

Love watching her blossom! Such great news!


Miniature Stump Copyright 2008 All Rights Reserved Baby Blog Designed by Ipiet | All Image Presented by Tadpole's Notez