Fighting the Old Demons

Where has the past week gone?

It started last week on Wednesday when I put a "well" Jaycee to bed. An hour later, she was up crying and turning blue. When the home interventions were obviously not helping we rushed her to the emergency room. I rang in Thanksgiving in the emergency room with my husband and hospital staff. After tests and monitoring, Jaycee was determined to have pneumonia which always is hard on her little body due to her asthma, lung cyst, obstructive sleep apnea, and history of atelectasis. By this time, Jaycee was on oxygen and waiting for the Children's hospital to send their ambulance.

Fast forward... Jaycee landed in the Pediatric Intensive Care Unit because her oxygen requirement was so great. Her blood pressure was very low and a couple of liters of fluid were pushed in an attempt to keep it up.  Her vitals were all low or high and there was some real concern she was in shock.

I hate the ICU. I mean no one loves it, but it does a number on me emotionally. But I know that Jaycee hates it much more than me. I have a short health history I keep of Jaycee in my purse for emergencies like this, but it is lacking some details. I can say that this illness makes at least 8 admissions into the ICU for some sort of respiratory problem.

The positives about being there a few times is that you learn the ropes. You know what alarms and beeps to be worried about and when they are nothing to be concerned about. You learn your child's vital signs and know when to be worried and when to be very very worried. You know what the parameters are for needing more support with breathing and less. This knowledge makes some things easier because the first time Jaycee was in ICU back in 2011 for pneumonia, I was completely freaked out just because she was in there. I sat and cried and worried and she recovered just fine. Now, I know when it is truly a time to freak out.

Since 2011, she has been on a ventilator twice, spent both weeks and days in ICU, been on bi-pap support continuously, and been near death once while battling septic shock.  I have seen my daughter with art lines, central lines, picc lines, feeding tubes, cathed, suctioned, and medically drugged. I have felt fear like never before in that place.

Every time we leave ICU, there is a part of me that goes on with life. There is a small part of me that wants to never think about or deal with those demons we faced in that beautiful and terrifying place.

It is a place of miracles and victories and relief for families. It is also a place where some spend their   final moments. These souls shake the nerves of everyone around because you want to believe that no child ever dies and everyone has a happy ending. But some don't... And after seeing that play out for other families that scenario is trapped in a far corner of my mind that tries to come forward during Jaycee's distresses. I am aware of that possibility but I spend most of her illnesses thinking my daughter is invincible. I fear that fate that some have met because I know my child's health isn't perfect.

When Jaycee is in ICU, old demons resurface. When I walk past certain rooms that Jaycee once occupied and old memories flood back. The ones I try to forget. The ones that involve rapid responses and machines and fast paced intervention. I see doctors who broke bad news to me and prepared me for the worst. They spark memories too.

The times in the ICU have shaped me into the mother and person that I am. I have seen and heard things no one wants to be part of. I try to forget all the bad and focus on the good....that Jaycee made it. That she lived through it. That she got her miracle and healing. And I TRY not to let those ICU experiences affect our life once we leave. Sometimes they resurface in nightmares or in body tension on routine appointments in the hospital. They are there even if I don't want to admit it.

But then it all comes back. As we stepped into that all familiar unit last week, I wondered what hell Jaycee was in store for this admission. I worked hard to ignore the chaos around us, the memories trying to torment me with worry, and the fear this place brings. I fought a different battle than my daughter. Pneumonia was her enemy. Fear was mine. Hers will have a beginning and ending, but I fear mine never really ends, just hiding below out of my mind's forefront.

Tonight, I am more relaxed though. Her miracle came again. We left ICU today and moved down the hall to the pulmonary wing. Her recovery will continue for awhile but the danger is behind us. Her weak lungs found strength another time. Hopefully forever....

From Thanksgiving Past....

Looking for some reads to get in the Thanksgiving mood?

Here are some posts of mine on the topic of Thanksgiving. Take a read if you would, and have a Happy Thanksgiving!



When Trials Make You Feel Ungrateful


What My Daughter with Down syndrome is Thankful For


Irritating Things I'm Grateful For


Finding Thanks

Thankful, Grateful: The People who Help Us

I'm not completely independent. I can't raise my children all on my own all the time. I wish I could, but life is complicated and messy sometimes.

I don't need a house keeper, though that would be nice. I don't need a babysitter for date nights, since those are virtually nonexistent. No, no- the help I need is out of the ordinary due to my daughter's medical and special needs. There are many people in our lives that fill holes and jobs that I simply cannot do all the time.

I'm certainly grateful this Thanksgiving for:

Jaycee's Grandparents
Jaycee's grandpas and grandma are always quick to jump in and help our family. My mom has rode along on numerous doctors' appointments with Jaycee and I, so I would have company for the hours of driving. My mom has watched my daughter when she was home sick so I could work which has required her to learn how to do her vest therapy, use her monitor, and administer different medications. She has been the only brave soul who has kept Jaycee overnight so I could have a break.

Countless times over the past 11 years, Jaycee has gotten sick in the middle of the night or had an urgent need. Countless times, we have called Jaycee's grandparents with this upsetting news in order to have them meet us at the hospital or take our son while we transport Jaycee to the hospital. They have adjusted schedules, work, and their lives to help us during those crazy times. They have ran to the pharmacy to get medicines when I couldn't leave the house with Jaycee. They have brought us meals when Jaycee was sick requiring medications round-the-clock. They have helped us a dozen different ways over the years and for that, we're grateful.

Uncle Grumpy and Aunt Steph
My sister-in-law, Stephanie, and my brother Josh (AKA Uncle Grumpy...Jaycee called him this a few years ago and I still refer to him as that) have also helped us multiple times over the years. They have helped with my son's care while Jaycee was in the hospital or at a doctor's appointment. They have picked Elijah up from school, finished his homework with him, kept him overnight, and taken care of him when needed- sometimes with little notice. We're grateful to have people we can trust to take care of our son when we're not able to do it.

Jaycee's Individual Aide
I can count the number of non-family members who have watched Jaycee over her lifetime on one hand. Her needs are great, and only a responsible, patient person can be trusted to care for Jaycee the way she needs cared for. As you can imagine, it's a really bizarre feeling as a parent for their child to need an individual aide at school but you have no say in who that person is. When Jaycee was going to get a new school aide about 5 years ago, I was a little worried. I wouldn't know this person, who would suddenly be spending hours a day with my child.

Fortunately, Ms. Shannon and Jaycee have gotten along just fine over the past few years. I have seen and heard many horror stories when it comes to aides. I feel very blessed that I can send Jaycee to school each day knowing that she is in good hands with her aide. I know she cares about Jaycee, and I have no fears sending her off to school. I'm so thankful we have a great aide for Jaycee. 

Jaycee's Teachers
Jaycee has been in the same classroom from Kindergarten to 5th grade presently. When your child spends years with the same teacher, you pray you'll like them. Otherwise, it will be miserable for everyone involved. Like your child's individual aide, you hope the teacher is patient and understanding with your child with limited verbal skills and many, many needs. We have gotten to know her classroom teacher and aide well over the years. Ms. Amy and Mrs. Tolley have been wonderful with Jaycee. I believe they treat her like she was one of their own children. They know when to be stern and when Jaycee needs a break. Her teachers have sought my input when things aren't going right and listen to me when I have something to share. Teachers like this are a blessing, and I'm thankful she has caring people who treat her well at school.

Cousin Gabby

Jaycee has 7 wonderful cousins, but there is one that is her definite favorite. A few years ago, cousin Gabby became Jaycee's delight. Gabby has accepted the fact that Jaycee is going to want to hug her, kiss her, mess with her hair, go in her bedroom, and take a few dozen pictures with her every time they are together. Gabby has learned Jaycee's gestures, signs, and words so she can communicate with her. When Jaycee calls Gabby on FaceTime, Gabby knows how to entertain Jaycee. Jaycee just loves her cousin's attention. She asks for Gabby's whereabouts multiple times a week. Cousin Gabby makes Jaycee happy and that makes me happy. 

This Thanksgiving, I'm grateful for all the people who play an important role in caring for my children and supporting our family. They make our lives work, and I'm thankful for all of them. I hope all of you have people like that in your lives. 

Therapy Tip: A New Use for Bath Foam Toys

It's Therapy Thursday! This is the day that I share a tip based upon my experience as a pediatric speech-language pathologist and a mother of a child with special needs. Today's tip is quick and simple:

Using Bath Foam Toys for Language Building

Bath foam toys are often used with young children to make bath time more fun. These foam toys, like the 16 pack pictured above available in stores or online, are relatively inexpensive and easy to find. 

So here's what to do. Take the bath foams you have around the house (or purchase them). Grab a little water spray bottle like this one: 

Then head to your nearest glass door.

Use the spray bottle to wet a small area on the glass door, then place one of the foam pieces in wetted area. Tada! They stick! The young kids I have tried this with have really enjoyed it.

While you are playing with your child, here are some words and concepts that are targeted:
-Vocabulary Simply name the picture on the foam.
-Wet/dry Have the child touch the wet spot to really feel what wet means. Use a towel to make the glass dry again.
-My turn/your turn Take turns wetting the door to work on turn taking and saying 'my turn.'
-Up/high/low/down Use the child's shortness to your advantage! Have them say "up" before picking them up and helping them reach the top of the glass door to place a foam. Only do one foam at a time like this so you have many opportunities for them to say "up" (or whatever word or phrase your child needs to work on). Talk about the placement of the foams on the door using the words high or low.
-If you only have alphabet letters, you can work on:
      *individual speech sound imitation if your child has a speech sound disorder. (Example- Show the child the letter b, and model /b/. Have them repeat it.)
      *saying the child's name by spelling out the name with the letters.
      *naming letters of the alphabet for preschool age children.


Simple, easy, and fun! This is a great way to use a familiar item in a new way to build language. Give it a try!

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.

Love is...Consenting to a Surgery

The monitor beeps as numbers are displayed. 

There's constant scurrying outside the doors of the room.

My eyes strain to stay open after a grueling night. 

A whimper comes from my daughter's mouth. 

I take her hand, kiss her forehead, and say, "I love you, Jaycee." 

She says immediately, "Uh-uh!" (As in No!)

"Yes, I do. Mama loves you," I say with conviction. 

"Uh-uh," she retorts. 

I felt broken. 

She's miserable, and she blames me. 

She's partially correct. I consented to all this madness. My husband and I both did. 

Like many people with Down syndrome, obstructive sleep apnea (OSA) has been an issue for Jaycee since she was 3 years old. Having her tonsils and adenoids removed shortly after her OSA was diagnosed did not "fix" her apnea. Thus, treatment with c-pap started on my skinny, little 3 year old child. 

Over the years, her OSA has gotten worse. Some of it can be blamed on her weight gain (which has definitely been impacted by her health issues, hospital admissions, and prednisone use several times a year), but not all of it can. 

The first few years Jaycee had sleep studies, I prayed we would see improvements, and I prayed with confidence. Every time in the past 8 years of studies, it showed she was getting worse and needed higher pressures to force air in to keep her airway open as she slept. Eventually, she was switched to a bi-pap and on high levels of pressure. (19/15 with a rate of 15) I was told her pressures were so high that it was like driving down the highway and sticking your head out the window. More than one medical professional remarked how incredibly high her pressures were and wondered how she tolerated it. That fact is that she didn't tolerate the high pressures. She wasn't keeping her mask on at night. She was also beyond tired and ready for bed by 8 pm each night. 

In the last couple of years, several tests were conducted. Opinions were sought out. Options were made available. 

One professional nonchalantly suggested the best course of action would be to do a tracheotomy, which would bypass all the possible obstructions in the nose and the mouth. When I told this well-respected professional how I shocked I was by this option, he responded, "I don't see why you are so surprised. Your child is severely disabled. She doesn't even talk." 

As if that was a reason to do it? I never saw that "professional" again. A tracheotomy may have solved one problem, but it would have caused many new ones. It wasn't an option for us. 

And so we found ourselves going back to something offered 2 years prior, a multi-level surgery to address her obstructions. The first time the surgical option was offered, I said I would never do the surgery on my child. Things changed though, something needed to be done since Jaycee was no longer able to tolerate her pressures. Never say never! After a sleep endoscopy test which absolutely showed what was collapsing in her mouth and throat causing the obstructions, a plan was developed. 

We knew going in to this surgery that it was going to be hard as there were 5 places in her nose, mouth, and throat area that would be operated on. Jaycee's recovery was gruesome after her tonsil and adenoidectomy when she was 3. But, she was 11 now...older, stronger, and a much better eater. I was cautiously optimistic about her recovery. 

The surgery was absolutely worse than her tonsillectomy. Jaycee was older, but her response to pain was similar. As long as she felt pain, she refused to eat and drink. One night in the hospital was expected, but Jaycee needed a couple more. When we came home from the hospital, I tracked every ounce and she was barely meeting the daily goal to stay hydrated. Then she developed thrush- most likely due to the medications she was on post surgery coupled with the fact that she wasn't eating or drinking well. The thrush added to her pain and discomfort. The word stressful doesn't begin to describe the situation but it's the best word I have. (Other than horrible and terrible) She was in a lot of pain and had to be encouraged (often forced) to take anything by mouth including her pain medications. 

Then it got worse. Through the baby monitor one night, I heard Jaycee coughing. I went to her room to check on her and found she was coughing on blood coming from somewhere in her mouth. This is a long story, but I'll skip ahead to the part where Jaycee ended up back in the hospital for observation. 

About a week later, we awoke to Jaycee covered in blood again. A second bleed! Ugh! This time, the bleed had stopped by the time we discovered it. (Jaycee apparently woke up, took off her blood covered nightgown, changed into a new nightgown, and put herself back to bed!!!) Again...long story that picks up where this blog post began....

...in the emergency room with Jaycee arguing with me when I told her I loved her. 

I'm sure the surgery was confusing. I'm sure she didn't understand her pain. I'm sure it was all mentally and physically exhausting for her. It certainly was for my husband and I, and we didn't experience the pain of the surgery. I'm sure at that moment Jaycee wondered why her mother and father had allowed this to be done to her. 

Parenting is hard. Deciding what to do for your child with health problems is extremely complex as you must weigh risks and benefits. The decision to do the surgery was done with prayer, research, thoughts, worries, and hope for a better future. 

That surgery was 4 1/2 months ago. I still hate the thoughts of Jaycee's recovery and could talk to you for an hour about everything that didn't go as planned. I'll just say this. A sleep study just 6 weeks post surgery (which was only conducted so she could safely restart her bi-pap as we were using oxygen only after surgery) showed improvements already! The full effect isn't seen until 6 months post, but just 6 weeks later, Jaycee's pressures were dropped to a more tolerable level. We knew this surgery wouldn't get rid of her bi-pap machine. We were hoping for the result that occurred just 6 weeks later. Plus, Jaycee can now cough up mucus. She's never been able to do that! 

And so...

I sat in that emergency room feeling crushed from Jaycee's complications and her doubting my love. I wished for a time machine. I wanted to go back before the surgery and opt out of it to spare her of this pain. At the same time, I knew it would be better in the future after she was completely healed up. I had to simply give it time.

When I tell my daughter that I love her now, she says it back to me. 💓

Therapy Tip: Thanksgiving Ideas for Language

It's Thursday, which means it's Therapy Thursday here on the blog. Last month, all my posts were dedicated to Down syndrome awareness month, but the Therapy Thursday is up and running again. Like always, this is the day I share a tip based upon my experience as a pediatric speech-language pathologist and the mother of the child with special needs. Today's tip is:

Building Language During Thanksgiving

Thanksgiving will soon be here. I love using holidays to work on vocabulary and language skills. It gives me a chance to change up some of the things I do in therapy, which breaks up the routine for me and the child.

So, here's a few ways you can address some language skills using Thanksgiving themed items:

1. Make a turkey craft: 
There are many different patterns and ideas online on how to make a turkey for a simple craft. (Here's a link to some examples on a great website.) I have made turkeys out of brown construction paper with fake feathers. I have also traced the child's foot for the body of the turkey and traced the hands for the feathers. There's lots of different options out there. You can choose which type of turkey craft to use based upon the child's abilities.
I work with toddlers, so I typically do the simple crafts. Prior to seeing the child, I will have all the materials cut and ready to go. When you make a turkey craft in therapy, you can work on:
-Body parts: Name the parts of the turkey (feet, eyes). You can also have the child point out the parts on their body as they go along. If you do the craft that requires you to trace the child's foot and hand, you can reinforce foot, hands, and fingers as you do the tracing.
-Following directions: Making a turkey gives many opportunities for the child to follow directions. Think about combining directions to make them have 2-3 steps, so it will be harder for the child. Examples: Pick up the feather, and put it here. Get the glue, and put it on this.
-Attention span: Whenever you are doing something that involves multiple steps, you are helping the child stay focused and learn task completion. Don't let them stop until you're done!


2. Make a Thanksgiving card or collage:
Using clip art or free pictures online, you can easily print Thanksgiving related pictures. I typically use pictures of a pumpkin, leaf, turkey, boat, and a few different foods that are common on Thanksgiving. Sometimes, I'll print out a Pilgrim man and woman but call them 'mom' and 'dad' because those are common words I'm addressing with toddlers. I like doing these simple paste and picture projects because I can teach vocabulary as the child glues them on one at a time. Plus, they can look at this creation at home with their parents to reinforce the words.


3. Sort Turkeys:
If you search online, you can find turkey coloring pages (like these) to give you multiple options for some sorting activities. You can:
-Color sort: Color the turkey just 1 color but make 3 or 4 turkeys in this same color. Choose another color and make the same number of turkeys. Now, you can have the child sort through the colors (purple turkeys versus red turkeys). I have the child sort them into different baskets. I work with delayed 2 year olds, so sorting 2 colors is enough. But, you can do multiple colors if you want. Or, you can do 2 turkeys in 8 different colors and just look for matches.
-Big/little: Print out different sized turkeys and cut to size. Provide a basket for each size you are using. I usually just do big and little. Have the child sort through if the turkey is big or little. With toddlers, I make a clear distinction between the two sizes so it is not confusing.

Hope you can use some of these activities or adapt them for older children. Most of these take minimal advanced preparation and materials. Happy Thanksgiving!

Therapy Thursday is for educational purposes only and not intended as therapeutic advice. 

Diagnosed: Birth -VS- Childhood

I have been doing some thinking (too much probably) about my children and their paths to diagnosis. If you have ever read this blog, then you'll know that my daughter Jaycee was diagnosed with Down syndrome at birth 11 years ago. Just a few months ago, my son was diagnosed with Ehlers-Danlos syndrome at age 7. (If you missed the post on his diagnosis, you can read it here.)

Photo Credit: Short Photography

I responded much differently to each of their diagnoses. After Jaycee was born, I was in complete shock. For 9 months, I thought I was going to have a healthy baby girl. Learning at birth, she had Down syndrome, an AV canal heart defect, and would need an open heart surgery...it was too much! I had a very hard time adjusting to the diagnosis.

With Elijah, the news of a diagnosis was sort of a blessing. I began having some small concerns with him around age 2 when he couldn't run without falling. He ended up in physical therapy and occupational therapy for his low muscle tone for years. There were times when I would be very confused about some of his problems. Why did he have low muscle tone? Why is he "uncomfortable" sitting? Why did his toes bend in funny ways?

I researched some of his problems and ended up with no answers. There were times I was really fixed on finding an answer. There were other times when I would tell myself that whatever was wrong with him must not be too bad. After all, he was age level in academics.

I took him to a few specialists looking to see if there was an underlying reason for his motor delays and muscle issues. The first orthopedic doctor completely blew me off. I mean completely. I was treated like an over-reacting parent. I was told his problems were minor and weren't really impacting him. I disagreed in some respect because he did need both physical and occupational therapy after standardized testing showed severe delays in his motor skills.

The second orthopedic person I took him to a couple years later examined Elijah for less than 2 minutes. He told me he was fine. His gait (the way he walked) was strange, but nothing to worry about.

I was done.

Let me tell you something. There's nothing worse than having some legitimate concerns about your child, and a doctor can't even spend 5 minutes checking into things before he determines there's nothing wrong.

By the time I took Elijah to a podiatrist to look into some shoe inserts, I was not expecting anything earth shattering. This man took an interest in my son. He wanted to hear about some of his problems because he noticed something with him immediately. In less than 5 minutes of watching him walk, run, jump, and move his body, he told me he suspected Ehlers-Danlos syndrome. (We later saw a genetics doctor who confirmed the diagnosis.)

So you see, my son's diagnosis was different. It came after years of questions and second-guessing myself. After knowing what the problem was, so many things made sense. The information was helpful, and it let me finally understand my son.

The future of chronic pain and joint problems in store for Elijah was depressing. That part of the post-diagnosis reaction was similar to learning about Jaycee's Down syndrome and associated intellectual disability. The parts of the diagnosis that are predictive in nature were tough for me for both kids. There are some things about each diagnosis that sounded scary. Unfortunately, time is the only thing that reveals how a diagnosis will manifest in an individual...not information in a book.

I handled Elijah's diagnosis easier in some ways. I had 7 years with my son before he was given a life-long diagnosis. I had time to see my son's personality and strengths. This kid was memorizing sight words at age 3 and begging to sit in his sister's home therapy time with me. He's the kid with a love for presidents, state capitals, and state capital buildings. He loves playing guitar and beating on his drum. Before Ehlers-Danlos syndrome, there was Elijah. I knew that sweet boy well. After his diagnosis, he was the same kid with a different possible future.

It was different for Jaycee. She was born and Down syndrome was there immediately. I had no time to get to know her. Down syndrome was a dark shadow cast over her for so long. I couldn't see past it. Maybe it was because the NICU doctor literally pointing out everything on her body that indicated Down syndrome. I looked at her, and I saw only Down syndrome initially. She was also a baby with a heart defect. She slept and slept and slept those first few months. Her personality, preferences, and opinions became known over time. Jaycee was in there all along, but I knew Down syndrome more than I "knew" Jaycee at first.

Getting a diagnosis for your child at any time is hard. It's an emotional roller coaster, and it changes the life course for the parent and child. But, a diagnosis isn't the totality of a person. There's an individual person with a diagnosis. That person has a personality, attitude, opinion, and my love. That love and bond is stronger than any diagnostic term. I knew after Jaycee that we could get through any present and future diagnoses, because our love was great. By the time Elijah's diagnosis came around, I knew this well. I knew I could face that future with my son, because love has a power to want to conquer all obstacles.