Occupational Therapy

We have started Occupational Therapy for Max.  The original goal we had talked about working on was to be his sensory needs surrounding food/eating.  He's always displayed hyperactivity and lack of being able to focus, jumping from one thing to the next.  But the past little while its as if someone put the spin cycle on high in his brain!  haha. He can walk in to a room and you can see he is overwhelmed by everything and he doesn't know where to begin.  It's like he is trying to beat the clock and get through everything before time runs out.  He will grab an item, dump it out, look at it for a second and move on to the next.  He can clutter a room faster than you can say clutter!  haha

So, upon walking in to the room with the Therapist, she quickly noticed how Max moved about the room trying to make sure he experienced everything in it, in under 5 seconds.  So we changed his goals to work on his attention and get him to focus on something for a certain time frame.

She gave me this great tool to use at home.  Each day I have him pick out 3 or 4 different toys/activity and we put them in the order he wants to play with them.  The goal is to get him to focus on said toy/activity for at least 5 min or 5 turns.  At the end of each min/turn, he moves down one star until he has moved all 5.  Then we can either continue playing with that toy/activity, or move on to the next thing he has chosen and start again.

We've only been at this for a short time now and I have to keep bringing him back to the current toy/activity but it's a baby step in the right direction.. :)

Here's a good website to read more about what Occupational Therapy is and how it can help.  http://kidshealth.org/parent/system/ill/occupational_therapy.html#

Sleep Study

Max completed his sleep study recently.  My husband stayed overnight with him and said he struggled a little bit falling asleep with everything he was hooked up to.  Who wouldn't?!  Once he fell asleep, took him a couple hours to really settle in to sleep.

We received some initial findings and it showed mild obstruction sleep apnea (OSA)  So I of course hopped online to read about it:



What is Obstructive sleep apnea? (OSA) -- occurs when there are repeated episodes of complete or partial blockage of the upper airway during sleep. During an onstructive sleep apnea episode, the diaphragm and chest muscles work harder to open the obstructed airway and pull air into the lungs. Breathing usually resumes with a loud gasp, snort, or body jerk. These episodes can interfere with sound sleep. They can also reduce the flow of oxygen to vital organs and cause irregular heart rhythms.

Symptoms are:
Bedwetting
Choking or drooling
Excessive sweating at night
Inward movement of the ribcage when inhaling
Learning and behavioral disorders
Poor school performance
Sluggishness or sleepiness (often misinterpreted as laziness in the classroom)
Snoring
Teeth grinding
Restlessness in bed
Pauses or absence of breathing
Unusual sleeping positions, such as sleeping on the hands and knees, or with the neck hyperextended

We definately see these symptoms in him.  His Pediatrician has referred us to a Ear, Nose, and Throat Dr.  We will meet with the sleep clinic Dr. this week to go over everything and see where we go from here.

More on this as things develop.....

Thanksgiving

I LOVE Thanksgiving, one of my favorites!  I hosted this year.  I enjoy putting on Thanksgiving and having family over.  This year was a little overwhelming though with the kids.

My kids need A LOT of structure and supervision.  I'm still trying to figure out the day to day structure and get it implemented so we can lower the chaos that ensues on a daily basis.  And this Thanksgiving experience just reminded me how important this is.
Paige woke up and asked if it was a school day and I told her that she would have four whole days without school, beginning today.  She was not so thrilled about this.  Then she proceeded to have a 30 minute meltdown over what was for breakfast.  Things just went down hill from there.  She was so moody all day long with such attitude.  Mood and tude I like to call it.
The second that doorbell rang and my parents arrived, her and Max became overstimulated faster than you can say stimulated!  They literally ran through the house screaming, all excited, getting in everyones face, wanting to be silly and center of attention.   Getting them to sit down with us and eat was beyond difficult.  Everyone and everything caused Paige to give attitude and be moody.  At one point she ran off with the salt grinder and thought it would be a fun game to let me chase her around the kitchen island to get it back.  As I refused to chase her down and asked her to put it on the counter, she just threw it on the ground, breaking it spilling salt all over.  By this point, I was done! This was now the second salt shaker that had ended on the floor.  Earlier Max picked one up and ran around the kitchen shaking and sprinkling salt all about.   By this point, I was done!  Paige and I spent the next little while in my bed watching TV trying to get her to settle down.  As people came in to say their goodbyes, she would start kicking her legs and groaning at them to get out of the room.
Max has also started vomiting off and on over the weekend and hasn't been sleeping well.  So that's been fun.
This is pretty much how the holiday weekend went at my house.  Paige LOVES school and not being able to go for four whole days in a row made for a looong difficult weekend.  When she woke up this morning and asked if it was a school day and I told her yes, she and I, were more than thrilled to get her back on that bus!  :)

I was able still, to stop for a minute and reflect on all I have, and am thankful for it all!  I hope you all had a good Thanksgiving.

The Children's Center

The Children's Center has been such a great resource for us!  We have a really great Therapist there who we see twice a month.  This is where Paige attends Preschool.  It is a Therapeutic Preschool and she absolutely LOVES going.  It's an intense program that children attend 5 days a week.  Paige has made great progress there and we have been able to see some healthy changes at home because of it.
They keep the kids busy at school and individually recognize each child, making them feel welcome and safe.  It's a very structured setting with some activities such as:
12:15 - 12:45 Welcome and lunch
12:45 - 1:15 Toys
1:15 - 1:20 Yoga
1:20 - 1:35 Art
1:35 - 1:50 Circle time
1:50 - 2:25 Recess
It's difficult as parents to admit that there are problems at home and that you may need some extra help.  The Children's Center has helped us to better understand Paige and has given us many tools to help better approach and respond to her. It's all about the approach and response!

We have already put Max on the wait list for the Therapeutic Preschool program and he will begin services next month..

They truly have made me feel that it's ok to feel overwhelmed by my children and that they are there to help.  If you think there may be some behavioral concerns, your child has experienced trauma, suffers from Autism, hyperactivty, or you are just overwhelmed by being a parent.  I HIGHLY recommend The Children's Center!!


For more information you can check out their website http://www.tccslc.org

History and Mission of The Children's Center

Our Beginning

Founded in 1962 by Agnes M. Plenk Ph.D., The Children's Center began as a preschool in a community church. Some of the children attending the preschool struggled with severe behavior problems. At times, Dr. Plenk (fondly known as Agi) had to explain to parents that their child was too disruptive and could not return.

The response of one mother changed Agi's approach to these children forever. "You are the one person in the community who can help," the mother said, "and you're turning us away."

Under Agi's inspiring leadership, The Children's Center committed to its mission, which is to provide comprehensive mental health care to enhance the emotional well-being of infants, toddlers, preschoolers and their families.

How We've Grown

Over the decades, The Children's Center has grown into a complex agency. We not only provide a number of treatment services, but we're also involved with research and teaching in a variety of fields and in partnership with local universities. To keep pace with burgeoning community needs, we now have two locations, one in Salt Lake City and the other in Kearns. Between the two sites, we see families and children from every zip code in Salt Lake County.

Each year more than 2,000 families come to The Children's Center seeking help with a variety of problems. We work with families who are experiencing a divorce or separation and need help learning how to manage two households. We work with the child who is being expelled from preschool because of severe bouts of aggression. We help the child diagnosed with Autism Spectrum Disorder. We help families learn to effectively manage their child's complex developmental needs.

Children Come First

It can be very stressful for parents or caregivers to realize their family needs help. Some parents and caregivers worry that their parenting skills are the source of their child's problem. Others worry that their child might receive a serious mental health diagnosis.

When families come to The Children's Center, they are met with a compassionate team of psychiatrists, psychologists, social workers and counselors who have unparalleled training. Our team members understand the challenges of raising children with behavioral and emotional problems, and they have a history of proven success treating children from birth to age eight.

As a pioneer in the area of early childhood mental health, Agi taught us to always consider the child first and foremost in our work. This has remained a guiding principle throughout the transformation from The Children's Center's humble beginnings into a nationally recognized institution.

Cystic Fibrosis

I've taken this from the Cystic Fibrosis Foundation website.  This is an overview.  To read more about CF and what is being done to help find a cure, you can visit  http://www.cff.org

What Is Cystic Fibrosis? 

Cystic fibrosis (CF) is a life-threatening genetic disease that primarily affects the lungs and digestive system. An estimated 30,000 children and adults in the United States (70,000 worldwide) have CF.

In people with CF, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

• Clogs the lungs and leads to life-threatening lung infections.

• Obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients.

In the 1950s, few children with CF lived to attend elementary school. Since then, tremendous progress in understanding and treating CF has led to dramatic improvements in the length and quality of life for those with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Symptoms of CF

People with CF can have a variety of symptoms, including:

• Very salty-tasting skin
• Persistent coughing, at times with phlegm
• Frequent lung infections
• Wheezing or shortness of breath
• Poor growth and slow weight gain, in spite of a good appetite
• Frequent greasy, bulky stools or difficulty in bowel movements

CF is a progressive disease and I'm so grateful for the progress being made everyday to help extend the lives of those living with CF.  So far Max's lungs have always been healthy and clear.  He rarely coughs and even when we do his daily treatments, he coughs very little, if at all.  We seem to deal more with pancreas/digestive issues.   

Completing his daily treatments

Max is a typical 3yr old.  Just by looking at him, you wouldn't think there was anything different about him.  We do normal activites and are around people all the time. But, we do have to be careful about the germs he is exposed to.  So, this means that sometimes we miss out on activities, school, church, etc.  Whenever he isn't feeling well or catches even a simple cold it tends to linger longer than with most people - especially a cough.  He has a pretty weak stomach and a bad gag reflex. I've cleaned up more vomit over the past 3 years than I've seen in my 36yrs. of life!

When he is sick we also have to up the amount of times he gets his daily treatments. It can be tricky to juggle additional breathing/airway clearance treatments and enough feedings to make sure he gets what he needs each day. Sometimes these sick days can be really rough and require a lot of extra work on our part as we need to be more creative on how to help him release all his energy. Especially since he feels like he's just sitting around all day being hooked up to one machine or another.

Due to the fact that it's always been difficult for him to eat enough food or take in enough calories each day to gain weight, we had to make the decision to have a G-tube (feeding tube) placed. And because of his weak stomach and gag reflex, at times, we have to run his feeding tube with smaller amounts more slowly. Right now he needs to take in about 1800 calories a day to gain weight. 

There are many side effects to CF that many are not aware of.  One side effect we've seen is pruney skin. This boy loves the water, but not even 5 minutes in it, and this is what happens to his skin. Which can make for some very quick baths. 

Another side effect that he has are sinus infections. He tends to get a sinus infection every couple of months.

CF is intense and takes a lot of time and energy. Every 3 months we meet with a team that consists of a Pulmonologist, Dietician, GI Doctor, social worker, and a Respitory Therapist when needed.  Between daily feedings, breathing/airway clearance treatments, doctor visits and getting his energy out, we are constantly on the go. 

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The past week

These past few days have been a little overwhelming.  It's been one thing after another.  The kids need constant supervision to avoid/minimize meltdowns, tantrums, and aggression towards each other.  They play well for a few minutes together and then they don't know how to destinguish play, and getting to rough.

They've been set off by the littliest things.  Meltdowns for no reason, completely unreasonable things.  Yet completely reasonable to them.  Trying not to get worked up and jump into their brains for a minute is quite draining at times.

We've had 45 minute meltdowns because "I'm hungry and you're not driving home fast enough" then when we get home, refusing to get out of the car, therefore fueling the meltdown because mom is walking inside, all the way to being hit with toys, not sharing,  a glass of milk, purposely, getting thrown in the face.
This week has been things like this....everyday.....all day, one thing after another. You name it, we've experienced it this week.

Max has also picked up a nasty cold.  With his sick voice he sounds like Mickey Mouse.  It's sooo cute!!  But this of course means extra daily treatments and slowing down his feedings.  I'm ready for a new week to begin because this mom is ready for the men in white coats to come and get her!

And on top of all the day to day chaos, Max is not doing so well in school.  I think he needs a more structured setting and we've made the decision to pull him out.  We are beginning his Occupational Therapy services this coming week.  We're getting ready to complete his sleep study in a couple of days.  We are also taking him to where we take Paige, The Children's Center, we've got him on the wait list for their Therapeutic Preschool.  He may be a little developmentally delayed and expresses ADHD signs.

On a good note, got a progress report and Paige is doing really well at school.  Yay!

Meet Max

5 days old

Max was a surprise for us.  At the time he arrived, we had Paige and were also fostering a 1yr old boy.  Me and the kids were visiting family out of state when I got the message about Max's birth.  I was getting ready to head back home that next day.  The message stated that Paige's birth mom had delivered a baby boy and CPS was wondering if we'd like to take him in.  Uh, yes please!!  So for a second time, I called my husband to let him know that another baby, Paige's half sibling, was coming to our home the following day.  I spun myself into a whirwind of preperation; informing family & friends, setting things up between CPS and our foster agency, making sure we were packed and ready to travel back home, and making sure my husband was ready take care of this baby on his own until I could get there.  Needless to say  I was overly anxious to get back home quickly.  Major car problems changed that plan and that was the longest adventure back home of my life!! (a story for another time)   All I wanted was to get home to meet this baby!
We knew right off the bat that we would most likely get to adopt Max.  And all worked out just so.  We finalized his adoption shortly after he turned 1.

1yr old

Max was born drug exposed but not to the degree Paige was.  He came home at 2 days old happy and healthy.  He was a sweet, happy baby.   He was happy to be cuddled, not very fussy, a very content baby.  When we received the results of his newborn screening, my life was turned UPSIDEDOWN.  He tested positive for Cystic Fibrosis.  I had never heard of CF before.  Not only was I back home and having to wrap up and deal with all the car issues, figuring how I was going to be a mom to 3 kids under the age of 2, I was now thrown into a medical world I had never imagined I'd ever be a part of.  CF is a life-threatening genetic disease that primarily affects the lungs and digestive system.  I'll talk more about CF in another post.

Max was such an easy baby, except when it came to eating.  He would rather do anything else than eat.  From day one it was a struggle to get him to drink the bottle.  He did not enjoy solids.  He was a very, very particular eater. From very early on, we had to start giving him digestive enzymes with every meal, along with daily airway clearence treatments.  These are completed every day by a hypertonic saline via nebulizer (thins out the mucus) and CPT (chest physical therapy) to break up the mucus.

2yrs old

We also had him assessed for sensory issues and completed a round of feeding therapy.  This helped some but he continued to be diagnosed with failure to thrive and in June of 2012, he had a G-Tube placed. This was a killer decision for me.  He does eat orally but continues to struggle with eating enough each day, but with the tube, he has been able to make progress and slowly gain weight.  I'll talk more in depth about all things feeding tubes, in another post.

Max is now 3 and attending preschool.  This structured setting is helping him learn social skills and how to appropriately participate in social settings.  We are also starting Occupational Therepy to help with his sensory needs, hyperactivity, and improve his ability to focus and follow direction.   This kid has so much energy it's crazy!  He has a hard time focusing, very easily distracted and an EXTREMELY curious kid, and will have outbursts over the littlest things.  We will also be completing a sleep study in the next couple of weeks to determine if there is a sleep disorder.  He does not sleep at night.  He will be tired but it takes him a while to calm down and fall asleep and stay asleep.  He is up and down all throughout the night.

3yrs old

He truely is a sweet boy with such a funny personality.  He has a crazy obsession with vacuums and pumpkins.  And when you're having one on one time with him, he is so fun and helpful, and has such manners.  When he is with his sister, they feed off each other making for some rather stressful days.  But even on those "bad" days, he always offers me something to smile and laugh about.

Not a day goes by that I don't stress over this kid and think about how he may not have as long a life as others.  But he is here and he's mine and I take things a day at time and hope and pray that I'm doing what's best for him and his needs are being met.

Meet Paige

1 week old

I’ll never forget that moment I learned of Paige’s existence. I was sitting at work when I got the call from our Foster Care Agency. A newborn baby girl was being discharged the next day from the hospital and was in need of a foster home. I was given little information on this baby and that was that. I called my husband to let him know. Then I called my good friend who was already a stay at home mom and had my freak out moment. “Help, what do I do, what do I need?!” She came to the store with me later that evening and I picked up a few essentials. Most moms get 9 months to prepare for their baby. I had less than 24 hours. The next day, early afternoon, Paige was brought to our home. A brand new baby girl, our first foster child experience, and another moment I will never forget. She was the tiniest, sweetest little baby I’d ever seen! We didn’t know how long she would be with us, but I knew I was going to enjoy every minute with this girl. When Paige was one, we finalized the adoption. Little did I know then how she would forever change my life and everything I thought I knew about parenting.

1yrs old

Paige was born drug addicted. She spent the first 8 days of her life in the NICU with secretion in her airways and multiple experiences of respiratory failure. It took us nearly a week to get the tape residue washed off that was all over her body. During her first month with us she was so ridgid, always clenching her fists till she was white knuckled, holding her knees up to her chest, fussy, had to be held in a certain position. That first month was rough as we watched her go through withdrawals. Early on I began taking her to get zoned (similar to reflexology) what a blessing that was! The color came back into her and she started stretching out more, becoming more relaxed, and wasn't as twitchy. Getting past the withdrawal stage was rough.  For a while, every two months, she would get really congested and get this horrible barking cough. It was like clockwork. It would last a couple weeks, with that lingering cough. She wasn't sick or contagious, but she would always get it. She spent many nights sleeping upright in a swing next to our bed.  To this day she still gets this congestion and that barking cough,but the time in between episodes is not as frequent.

Just before turning 3yrs old

Paige has always been an anxious child and very easily over stimulated. Coming down from that stimulation is rough. I remember so clearly the first time I noticed this - she was about 6mos old and my sister was in town visiting. We had some friends over for an evening of dinner and games. That was too much for Paige's little body. She became very agitated and fussy that evening and woke up crying about every 20 min.throughout the night. She just could not settle down. Busy social settings were hard for her. When she was 3yrs old, we started noticing the behavior issues that we were warned about that drug addicted children may start to develop. She also suffers from night terrors which I will talk about in a later post.

4yrs old

Early this year we got her in to The Children's Center to have her assessed.  She was diagnosed with anxiety disorder. We were told "this is the way she is wired, everything she feels in on such an intense level" and oh boy, is this ever true! She has it in her head the way something should be, and if that expectation is not immediately met, things turn ugly VERY quickly! Her world is turned upside down when she is not in control. When she is happy, she is HAPPY. And when she is upset, she is UPSET! she is like an erupting volcano, with no warning. She is either at a zero, nice and calm, and in under a split second, she has erupted to a 10. We put her in preschool as early as we could to get her socializing and to help learn how to socialize appropriately. We currently see her therapist twice a month and she attends a Therapeutic Preschool 5 days a week. She does really well when she is in a very structered setting. some days go well and other days can get rather overwhelming trying to keep up with her mood swings. I'm so thankful for her therapist and the tools we've been given to help her better express her needs and emotions. It is hard work every day keeping up with her emotions. she is such a sweet little girl with so much personality. I love when she shows us that sweet, loving, caring side of her.

A little background

My husband and I had been married for 6 years before kids became part of our family. We'd struggled having kids of our own and decided to become Foster Parents. Through this process we fostered three young children and were given the opportunity to adopt two. They are half siblings and both came to our home straight from the hospital after birth.

These kids come with challenges as all kids do.  This blog is about those challenges, how we take them on and get through the day.  The good, the bad, and the ugly.

No mom wants to see their kids struggle and having two children with such needs is hard to wrap my brain around some days.  Not a day goes by that I don't doubt my abilities as their mom. But even though these children are not mine biologically, I have no doubt in my mind that they are mine, they were meant for me.  They were entrusted to me and together we will ride this journey and learn from each other.  I love my kids more than words can say!!!

I welcome your positive feedback and comments.  Please share your tips, tricks, and advice.  This parenting thing is tough, let's help each other out.  I'd love to learn from you!