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Monday:

*Audrey had a great Monday start. Tons of standing without any complaining! Using both hands to help pull herself up from a squat or sitting position. And she attempted to crawl up 3 stairs (multiple times)  

*She wore orthotics for almost 2 hours! 

*theratogs for almost all session 

Daddy even got to see her in action and he was impressed! 

*she made it to 3 sets of 30 reps for her reciprocal leg presses 

Day 2: 

Got to work on the platform swing standing today! Reaching and holding on practice as well as balance coordination and control. 

Day3: 

3 sets of 30 reciprocal with 1.5 weight instead of 1lb! Kept orthodoics on 2.5 hours! Lots of squats to stand today .Was not a fan of the gait trainer (walker). Needs to build a little more strength with standing! 

Last day: 

Finished the week off with a post assessment, reciprocal cage work and the bike. She even got a certificate of completion and a star fish shirt 😊

Next steps:

Next month is going to be big! We have assessments with our insurance provider to hopefully qualify for more therapy time, also applying for CCS for Audrey (California Childrens Services) to hopefully get more services as well, and I also have the school district transition meeting to see about placement for this coming year! 

Looking into another intensive program to do that is more local this January as well! 

 Lots of Changes will be happening come this fall/winter for us. Exciting but a bit overwhelming. Starfish therapies helped her build strength and endurance. So now, practice practice practice at home! 

I will focus on working with Audrey on the following:

*Squat to stand positions

*Wearing orthotics for at least 1 hour each day

*Getting her to pedal a bike we have at home

*working in her gait trainer walker more 

We will continue to #kickcask every single day! 

Audrey is increasing time and reps this week. She is building strength and tolerance each day. Here is a recap of week 2 with Starfish therapies:
Day1: was pretty routine but wasn’t much different than week 1. Got to do her bike workout during the eclipse! 

Day 2: we had a rough start (very fussy and non compliant) just an off day but she added 15 more sets of the reciprocal legs in cage all the way to 45 reps! 

Day 3: worked up to 60 on each leg in cage work for a 120 total, such a workout! Tried a new platform swing to work on core control, balance and reflexes. She loved this activity! Got to have visitors too! My aunt and uncle got to see her in action a bit and visit with us after. AFO orthotics on for 1 hr 30 minutes today which is the most she has ever worn them. 

Day 4: Lots of standing activities, tolerated them much better today.  She even learned how to push down on a ball drop toy! She is starting to kick her foot without as much prompting in the reciprocal cage work! The goal next week is to do 3 sets of 30 On each leg. She only had 15 more to go from today’s therapy!

Standing activities seem to be the most challenging for Audrey which is something I’m really going to have to practice on with her at home.  Her crawling is improving and the goal is to get 7 consecutive crawls (she’s up to about 5) without her sitting up or extending at all. The hope with this is that she gets that repetitive motion needed for walking in the future.  

I know the cage work and bike are helping her build that strength up which will be very helpful with standing and walking. It’s amazing to see how hard Audrey works. Sometimes it’s frustrating to not see immediate results but I know these skills will all come with more time and strength.  

She is a warrior. What other 2 year old gets an almost 3 hour workout each day with no breaks?! #kickingcask 

These last 4 days have been full of hard work! Audrey increased her time and duration on most of the PT activities each day.  Here is a recap of some things they worked on:

Day 2: 

*Adaptive bike for about 20 minutes. 

*Muscle isolation bungee cords (she was not a fan of) 

*sit to standing activities with orthotics on for 40 min total (most she has ever worn them) 

*Cried in cage work today which is never easy to see but I know how much it will help her in the long run. 

Day 3: 

she tolerated 25 leg rotations compared to 20 from the day before 

Orthotics on for 1 whole hour 🙂 

Was amazing in cage no crying!! 

Day 4:

Increased her cage time and did 30 reps of the leg rotations (reciprocal pattern)

Rode bike for 30 minutes outside today! Quite the workout! 

Used theratog body suit while crawling to give her body more input. 

It’s been hard work but so amazing to see them push her limits.  Lots of tears and 2 year old moments but my little warrior is such a fighter.  Audrey’s favorite activity was doing ab workouts on the medicine ball and nursery rhymes almost always stopped her fussiness.  Excited for next week but happy to be home for the weekend.  

Next week we will get to work with a few different therapists.  It’s great to see how she reacts to other professionals.  Audrey scarfs down her lunch and quickly takes her nap after therapy because she works hard the entire time we are there.  

Today we started Starfish therapies intensive program for Audrey.  I was a bit nervous that it wouldn’t live up to the hype of our last intensive (Virginia trip) but am so glad to report how great day 1 was! It’s amazing to see what Audrey can do when given the time with these amazing therapists. 

Today she was assessed, then they jumped right into working with her. For the next 3 weeks, they will focus on:

*increasing crawling distance/consistency

*work on transition to standing 

*gain stability for standing activities

*continue to strengthen the use of her right hand.

So excited to be here and feel extremely blessed that we have a place to stay only 2 miles away from the clinic! Very thankful to have such a huge support system, especially my mom. We wouldn’t be able to do this without her help! 

It’s never easy for me to be out of routine but Audrey is being a trooper and adjusting like a champ. I’m so proud of her and can’t wait to see how far she comes. #kickingcask

Today especially, I was reminded of how hard it is to have a non-verbal child. All morning, even at music therapy which is usually her favorite, Audrey was fussy and a bit off. I have no idea why. No fever, no cough or runny nose. But something was bothering her. She cried the entire 35 minute drive home for no reason that was obvious to me. As a parent, this is awful to experience. Not knowing what is wrong with your child is heartbreaking and causes so many tears (for mom and child). Going through the list of things that might be wrong is beyond frustrating, especially when you never reach an answer. I have given medicine when I probably didn’t need to, or let her watch tv when it wasn’t necessary because I was out of ideas on what could be wrong and do anything to pacify her. I know all parents do this to some extent but I often hear parents complaining about “their kid that never stops talking.” Although I can understand why this may seem frustrating to parents who don’t no any different, it is without a doubt one of the hardest things for me to hear. What I would give for my kid to talk my ear off in the car, or heck even throw a tantrum and tell me they don’t want something.  

I don’t get to hear “mama” or “I love you” to make up for those frustrating terrible 2 days. 

It is isolating, depressing and heart wrenching to not know what is wrong with your child.  

So please, next time you are complaining about your child’s endless story of their day, them saying a bad word in front of an elderly person or telling their teacher an embarrassing story, remember that some moms (including me) would give up everything to hear their child speak. 

The positive of this however is that I don’t take communication for granted. Every time Audrey attempts communication and is successful, we are truly grateful. 

I don’t expect for others with typical children to fully understand this nor would I wish it upon anyone. I am not wanting pity or sympathy from this post only sharing a perspective. One of the reasons I started this blog was to educate others on my daughter’s diagnosis and shed some light on my parenting journey as a special needs mom. Think before you speak and soak up those words! The next time the grocery store clerk asks your child their name and they answer, smile and remember how lucky you are ❤️

For the past week, we have been working with a specialist to try to figure out Audrey’s sleep situation. One of the things we did find out is that her iron (ferritin) levels are very low which could be contributing to her restless legs throughout the night. So they put her on an iron supplement and we will re test her blood in a few months to check on those levels. Another thing I have been instructed to do is something I have been attempting for the past year: getting Audrey to fall asleep on her own. 

I have constant guilt because I still rock her to sleep. Now, I do enjoy the cuddles, but it has simply been the easiest way to get her to sleep. I realize sleep training isn’t easy but nothing with Audrey ever Is…so therefore we have been rocking her.  

Although I would love to not kill my back and make bed routine shorter, knowing that I get her to sleep gives me a sense of accomplishment. This may sound silly but sleep has never been easy for Audrey. 

As a newborn, even before we had a diagnosis, she was always the baby who was awake. Never slept in the stroller, or the car, or out and about. I use to look at couples out to dinner with their newborn peacefully asleep in their carrier and think “wow Audrey never does that”

We use to joke when she was an infant that she just didn’t want to miss anything and wanted to be the life of the party. But deep down I knew this was odd for her to always be awake. It was as if the stimulation around her wouldn’t let her body rest until we were alone, at home and I was rocking her. 

Needless to say, this sleep training week has been awful. Filled with tears from the both of us. A constant battle of letting her cry and letting my mom intuition take over.  Giving in before she becomes hysterical has been the goal… which hasn’t worked each night. It’s definitely a work in progress and we are always trying something new. One day, MAYBE, we will all get the sleep we need! 

Signed-one exhausted and drained special needs mom 😜

Today I had a meeting with Audrey’s case worker regarding her transitioning into the school district at age 3. Infant development programs are no longer funded through the regional center once a child hits their 3rd birthday. So we will go from having all therapies in home to getting (hopefully) all therapies within the school district. Having a background in education you think I would know about this process… nope. Not. A. Clue. It’s complicated, frustrating and if you don’t stay on top of it all, nobody else will. Although I am ready and willing to advocate like crazy for Audrey’s needs, I was reminded today about what a process this will be. My future is filled with IEP meetings, case managers and resource specialists. And once again I will take on that teaching roll but this time it won’t be teaching students, it will be teaching the professionals about Audrey’s specific needs.  

The mobility progress we have seen over the past month with Audrey has been great but I am often snapped back into reality of this different life we lead. Worrying about the program she will be placed in, getting referrals for potential wheelchairs and other adaptive equipment and finding outside resources that will fund special programs are just a few of the things I will need to do this coming year. Nobody can prepare you for this… especially when so much of it is unknown. I hope every single day that we find a program that reaches all of her needs but pushes her to do more. One day at a time is often what people say but how can you take it day by day when I have to plan for her future?  

Still figuring it all out. I am thankful to have a supportive team that helps to guide me in the right direction for Audrey and am so very grateful for my friends and family in the education system. We will start our transition process this fall… hoping to blog more about it in hopes of helping other families navigate their way through this difficult special needs school district journey. 

This week I have cried lots of happy tears! Happy tears haven’t happened in awhile around here…so it is pretty exciting! Since we have been back from Virginia, I have been searching for more. More therapy, more hours with professionals, more tools, more exposure for Audrey. Well I found it! There is an intensive physical therapy program that she will do this August in San Mateo, CA. 

The clock is ticking for her to get moving because it is a personal goal of mine to have her walking by the time she starts preschool at 3 years old. It is also a known fact that early intervention is the way to give your child the best possible outcome. This past year I have been feeling that goal may be a bit out of reach…until this week! 

We started fundraising for the therapy program and in a matter of days have sold lots of tickets and had tons of donations from people. It is truly heartwarming to see your community come together. We are so lucky to have family and friends to love us and spread awareness. A huge thank you again for all those who have reached out to us and contributed to this. We are over the moon for this therapy and it couldn’t have come at a better time because Audrey has officially started to crawl this week! Something I have wished for and watched her struggle with for over a year. Such an amazing thing to see. It needs a lot more practice and fine tuning but we can officially say we have a crawler! She is #kickingcask every single day and I am so very proud of her. Most days I feel like I don’t do enough for her and wish for so much more. But today I’m just smiling. Things are so hard and always just out of reach for my precious girl and as a mom I struggle to see this. Knowing she can, just on her own timeline, makes my heart burst with joy. My sweet, dedicated, strong warrior baby. She amazes me every day! Can’t wait to update you all this August with her therapy progress! Stay tuned for many more blog posts 😘

It’s 10:38 pm and I have been asleep for maybe 1 hour. I awake to a sound coming from our monitor and see that Audrey is tossing and turning in bed. I get up and go pee because I know it will be my last chance until I have to go in her room to try and get her back to sleep. As I struggle with her, tossing and turning, I feel helpless and tired. I can’t help but wonder why I can’t calm my baby. Why is something as simple as night time sleep so hard for my girl? Audrey has to work hard for everything she does. And she does it all with a smile on her face 95 percent of the time. She truly is my little warrior. But gosh, I wish things weren’t so hard for her. Now it’s 3:28 a.m. And her melatonin that I gave her at 2:45 has finally kicked in. She’s asleep… for now. This is when I should be asleep but my mind can’t shut down. Guess I will try and close my eyes a bit before she needs me again.  

Ever since I was a child, I have always worried about way more than I should.  I worried about school, worried about my weight, worried about my future etc…but then I became a parent. Not only a parent but a special needs parent on top of that. My worrying gets the best of me and it’s something I’m always trying to do less of. Because worrying isn’t going to change anything about our situation. Worrying isn’t going to make Audrey walk or talk. Worrying definitely isn’t going to help her gain weight or help her sleep better. Worrying isn’t going to change what school program she gets put in or whether or not she will need life long services and aide. 

So although my worrying will never disappear, I’m trying to be more proactive. Over the past week I have been making endless phone calls, writing emails and looking up information on the web for more. More services, more hours for Audrey to learn and grow. 

Today I took Audrey to her pediatrician for a weight check. We do this every 2-3 months. She gained a few more ounces but we can’t seem to get her past 18 lbs! She weighed in at 18 lbs 8 oz today. Another worry right? 

Along with referring us to a dietician and putting in a request for a hip and back X-ray (on going things we have to check up on with Audrey), we discussed other possible services today. I think it was a successful appointment and hope that it will begin my newest journey of me fighting for more. Although the system is hard especially for “rare cases” such as Audrey, I’m thankful for a select few doctors who listen to my wants and needs.  Let’s hope this is one less thing I have to worry about!