Showing posts with label crying. Show all posts
Showing posts with label crying. Show all posts

Friday, May 30, 2014

Forget Spring, It's Summer!

I think North Dakota forgot all about spring this year and just went right into summer. As our pastor said in church last week, "I guess North Dakota likes quick transitions!" It seriously seemed like one day the ground was still brown, the trees still bare and there wasn't a robin in sight then the next it was like the exact opposite. While everyone was certainly getting tired of old man winter, we sure weren't ready for 90 degrees!
Faith enjoying being outside at Michelle's with her ducks!
Besides it feeling like summer, I am thankful that it really is summer vacation and that Faith is done with school this year! She did so well the first half of fourth grade and somewhere along the way around Christmas vacation she seemed to really be struggling. We chalked it up to her high muscle tone protesting the frigid temperatures.

When it started warming up a little, though there were days she still struggled to get to school. In February she came down with a sinus infection then in May the kids were getting a little more rambunctious than usual so it was harder for her to be around them.
Fun in the sun!
Her last day of school was supposed to be Thursday, May 22nd but due to a snow day in April, the year got extended one more day. On Thursday, she didn't seem to feel well and was protesting going to school but we sent her anyway. That night she came down with a fever of 100.7 degrees and had a very sleepless night. She wanted to go to school on her last day because they were going to the park. Right after watching Wheel of Fortune she said, "Maybe if I go to bed early, I'll wake up and feel all better."

The next morning she still had a pretty high temperature but she still wanted to go to school. When we told her she couldn't go, she started crying. It was pretty sad. I felt bad all day about her missing her last day. We have since gotten over it though and she is very much enjoying her first week of summer vacation!

Friday, November 29, 2013

What Faith is Thankful For

As a child who has a feeding tube, Faith doesn't really have reason to look forward to a big Thanksgiving dinner. Throw in the fact that she has not been feeling well this past week and woke up yesterday morning crying and gagging on mucous, she didn't have much of a Thanksgiving.

So for her Thanksgiving celebration,  I told her that we could make a list of things she is thankful for and she was happy doing just that. She also had me help her write little letters to her friends and family saying things like, "Thank you for coming to church" or "Thank you for letting me come visit you."

It was really sweet and she came up with about 20 people she wanted to write letters for. I think this says a lot - that she is simply thankful for the people in her life.

Thankfully, she feels much better today.

Here is her list for things she is thankful for: 


Faith doesn't miss Wheel even
when we'ere on vacation!
  • Mommy and Daddy
  • Wheel of Fortune
  • Big hugs and kisses
  • Having a sleepover with her grandma (we haven't actually done this yet but she is obviously looking forward to it!) 
  • Baby Allie - her doll she's had since she was a baby
  • Yogurt and chocolate
  • Bedtime with Elmo DVD
  • Going to church
  • Watching her PBS shows
  • Her bed with her pink cupcake sheets

I think making her list is going to be the start of a great Thanksgiving tradition! To see my list of things I have been especially thankful for this year, click HERE.

Sunday, September 22, 2013

How Chiropractic Care has Benefited Faith

One of the main reasons we sought chiropractic care for Faith was to help her with her startle reflex. Most people startle when they hear a loud, sudden noise but for Faith her startle can be debilitating. When she was younger if she startled often in a short amount of time, she would break down in tears.

Her startle made it difficult to do things like being in a school program and something like going to the movies was totally out for her. It was hard to watch her startling constantly during a church service when someone spoke into a microphone. Her whole body would tense up making it impossible for her muscles to relax.

Besides her startle, we were also having a tough time dealing with her emotions and behavior. She would have screaming fits that left me and Rob feeling helpless, not knowing what to do to help her. We thought as she got older, things would get better. But last year during school, her tantrums escalated and we chalked it up to pure exhaustion.

Her pediatrician even agreed she was just too fatigued and so he told us to try to do a couple of half-days of school instead of five full days. This seemed to work for a while. But then, there were mornings she was back to her old self, screaming and crying that she didn't want to go to school. It took all of our energy just to get her there. We tried everything we could to help her - from disciplining her to trying to talk to her and praying for her. Last January, those prayers were on their way to being answered.

We had connected with a mom whose little boy also had cerebral palsy at the Healing Rooms. Through her, we found out that ABM, an alternative type of therapy was coming to Bismarck. Also through her, we got the name of a chiropractor who she thought might be able to help Faith.
Faith and Dr. Steve
In researching what could be going on with Faith, I realized some of what I was reading about neuro-developmental challenges which includes sensory processing. She simply wasn't able to process all of the information and stimulation going through her nervous system. This left her feeling like a complete wreck and was also partially responsible for her severe startle.


Something intriguing I saw on Dr. Steve's website was two goals they had in dealing with children with neuro-developmental issues: "First, we seek to calm and balance the central nervous system.  Secondly, our program uses multiple approaches to 're-program' and 're-integrate' their disorganized nervous system."

Faith managed to make it through the rest of school last year and during the summer, we had a consult with Dr. Steve. She then began getting adjustments about three times a week. Rob and I also started going to his informational seminars and learned about sublaxation and how it affected our daughter.
Faith getting adjusted during one of her appointments
After receiving adjustments all summer long, Faith entered the fourth grade a new girl. There are no more morning tantrums, she looks forward to doing things out of the norm like going on field trips and she is able to go to school six hours a day, five days a week. The transformation has been nothing short of amazing. There is sign in Dr. Steve's office that says, "Expect Miracles" - we are true believers that miracles do happen!

We are so convinced that chiropractic care has benefited our daughter that we highly recommend any parent whose child has been labeled with ADHD, anxiety, sensory processing disorder, mood and behavior disorders, developmental delays and whose child even has special needs such as cerebral palsy.

I mentioned sublaxation earlier which can be a result of physical trauma like being born via c-section. Many kids with cerebral palsy are born prematurely and their birth often involves an emergency c-section. Click here to see a video of a baby being born via section. WARNING: if you are squeamish like my husband, you probably won't want to watch this! But it is interesting to see how they have to pull the baby out by the head and the negative effects that can have on the spine which in turn can affect the whole nervous system. 
chiropractic care has benefited Faith immensely
Just recently, we had a reexamination with Dr. Steve and I was able to check off the following:
  • Less temper tantrums
  • Less/no anxiety
  • Improved sleeping
  • Better able to handle stress
  • Better emotional control
  • Stronger immunity
  • More energy/vitality
  • Increased concentration
We still have a ways to go. Her startle has not disappeared but we notice she startles less often and when she does startle, it's only for a moment and she is able to relax soon after. We are hoping that one day she will have a normal startle reflex and that we will eventually be able to check off:
  • Improved digestion
  • Improved posture
  • Improved learning ability
  • Improved bowel function
We are very excited about all the gains Faith has made these past four months. Our only regret is that we didn't know about the benefits of chiropractic care sooner!

Saturday, February 23, 2013

Feeling Worn and Weary?

Have you every felt this way? 

I know I need to lift my eyes up
But I'm too weak
Life just won't let up
And I know that You can give me rest
So I cry out with all that I have left

My prayers are wearing thin
And I'm worn 
Even before the day begins
I'm worn
I've lost my will to fight

I bet there are a lot of special needs parents or parents with very young children who can relate to these words. I know I can. Whenever I hear the song, Worn which contains the above lyrics, I am transported back in time when Faith was a little baby. I was working full time during the day and trying to look after her at night. She did not sleep well, which meant neither Rob nor I sleep well either. To make things even harder, Rob worked overnights on the weekends.

I was in a major state of sleep deprivation. I started drinking caffeine and eating sugar everyday at work to help me stay awake. It didn't help that my thyroid was out of whack. Eventually I was diagnosed with clinical depression and put on an antidepressant. It seemed that every day for years I was exhausted, I was completely worn.
Faith's post-NICU days were filled with sleepless nights that lasted throughout her early school years
I tried my hardest to pray during these difficult times but all I could think to pray for was sleep. Thankfully, our family had a lot of prayer support from volunteers at the Healing Rooms and from friends and family as well. Through the years, Faith continued having trouble sleeping but it has gotten better. There was a light at the end of the tunnel. Currently, I am off my antidepressants and no longer even drink caffeine. God is good!

So for all of you special needs moms or moms of young children who are struggling just to get through the day, I would like to offer you encouragement and hope. There is a light at the end of the tunnel for you as well. Just don't be afraid or ashamed to ask others to pray for you and keep trusting that He will bring you through this difficult time.

Some Scriptures for the worn and weary:

Come to Me, all you who labor and are heavy laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and lowly in heart and you will find rest for your souls. For My yoke is easy and My burden is light. Matthew 11:28-30

When you lie down, you will not be afraid; Yes, you will lie down and your sleep will be sweet. Proverbs 3:24

But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31


By the way this song was written by the lead singer of Tenth Avenue North, Mike Donehey. He and his wife had two young girls and one night as they lay down in bed, his wife reached over and told him how worn out she was feeling. He knew he needed to write a song called "Worn." 

Feel free to check out my website www.carijean.com and my other blog Having Faith 

Thursday, January 24, 2013

Life Without an Elevator

We are currently on day four with no working elevator in our apartment building, one that it is supposed to be handicapped-accessible. It has been a little frustrating to say the least. It was supposed to be fixed on Wednesday afternoon but we are still waiting.
No working elevator in this apartment building
It has been going out off and on recently but just once was it a major inconvenience when we were getting Faith ready to go to school and realized the elevator was not working. Needless to say, she was late for school that day.

This time we discovered the elevator was out on Monday after we called the Healing Rooms and realized they were open. We gleefully got bundled up in our winter attire - even the below-zero temperature was not going to stop us.

We ran into a major disappointment though when we got to the elevator and realized it wasn't working. We went back to our apartment and figured out what to do next. We thought about having the Healing Rooms come to us because Faith really wanted prayer but that wasn't going to cut it for Faith. She said that would be "boring."

Rob got her chair downstairs then carried Faith down and put her in it. Getting her and her chair downstairs is the relatively easy part, it's more of a challenge getting everything back up. We had a fun time at the Healing Rooms and were very blessed by their prayers and scriptures they shared with us. We were glad we made the effort to go. Upon getting back home, we decided to leave Faith's chair in the van and just bring her up.
Faith's chair has made many trips up and down the stairs this week
That evening, Faith was not a happy camper that she did not have her chair to sit in during her last feeding of the day. We tried to put her in her sit-to-stand apparatus in a sitting position but she didn't like that. I ended up sitting with her on the couch during her feeding. She was still crying for her chair when she went to bed.

The next day, we got Faith downstairs then she and her dad took me to work and they went to the clinic to get her mic-key button changed. (It had come out at school last week, thankfully her school has a full-time nurse who put it right back in).

The elevator still wasn't working when they got back home. Rob managed to get Faith and her chair upstairs by himself. Thankfully, I was able to get a ride home from work that evening so he wouldn't have to take her and her chair up and down the stairs again. One good thing in all of this is that Faith has a manual base on her chair which makes it possible to get it up and down the stairs. If she just had a power base, there would be no way we could do it.

On Wednesday, we made it to school even though we were a little late. After school, the elevator still wasn't working (the building managers had assured us it would be fixed Wednesday sometime). This morning Faith woke up with a low-grade fever and because of that combined with the freezing cold weather and no working elevator, we decided to just keep Faith home. When I got home from work, I was very dismayed to find it had still not been fixed.

There are other people in our building with whom this has been a major inconvenience for - especially those elderly and wheel-chair bound tenants on the third floor.  Many of the caretakers and those who come here from community support organizations are all very frustrated.

This really, really makes me want to live on the first floor or a different building altogether! We are really hoping and praying that when they do finally get the elevator going again it will be fixed for good this time! And I'll remember to never take a working elevator for granted!

Friday, September 21, 2012

Concerns for Faith

This week has definitely been interesting for our family. I started my new work schedule on Monday and it was so wonderful crawling into bed with Faith in the morning and gently waking her up. When she realized I was in bed with her, she said, "Mommy are you getting me ready for school today?" I pretended not to know how to get her ready for school so she proceeded telling me what to do and in what order. When I gave her a kiss goodbye she had the sweetest smile on her face.
Me and my sweet little girl
Rob was able to drive me to work since he needed the van that day. It all worked out perfectly and I was so happy to have spent the first part of the morning with Faith. Now fast forward to Thursday. Faith woke up saying she didn't want me to get her ready for school and when I tried to start the routine she became quite upset and demanded me to call the school to cancel. Where oh where was my sweet little girl?

Her fit escalated to screaming and yelling for over an hour. It was impossible to bend her into her chair as all of the high tone in her body was operating at full force. I felt really bad when I left Rob to deal with her on his own but there wasn't much more I could do.

Friday morning went better and she only went to school for half the day. In the afternoon she had an appointment with her pediatrician and then after that she was fitted for new foot orthotics. At her doctor's appointment, Rob discussed our concerns about her fatigue from a full week of school, her extreme gassiness and some feeding issues. He gave us a prescription to deal with her overly gassy tummy and suggested giving Faith a few afternoons off from school during the week.

Because she is constantly fighting her tone all day long trying to do things like drive her chair, work on her computer and keeping her head up, she uses much more energy than her classmates. She burns her calories faster than they are given to her. No wonder she runs out of steam at the end of the week!
This photo was from a few years ago when Faith was fitted for her last pair of orthotics.
I am really concerned about her fatigue and I'm worried about her weight as well. The sensible solution would be to try and get more calories into her but this usually results in negative digestive consequences. Her body can so easily get thrown off and out of balance. Soon, we're going to be starting another kind of pediasure with added protein and I really hope that helps.

After her doctor's appointment, Rob took her to get new foot orthotics. She may not be getting bigger around the waistline but she is getting bigger feet! It is sort of a long process that involves cold, gooey paste-like stuff getting wrapped around her feet and just above her ankles. She was very patient and was glad to see everyone at pediatric rehab again. Since starting her therapies at school, she doesn't go over there as much anymore. Afterwards, she had to go home for a quick feeding, then they came to get me after work. We made it home just in time to watch Wheel of Fortune.

I'm thankful it is the weekend so Faith can get some rest. For me, I'm going to be spending a lot of time praying for wisdom on how we can best help our daughter at this stage in her life.

Tuesday, August 31, 2010

Pajama Wars

Faith in her favorite pajamas
 I can definitely tell that Faith is back in school. Last night we were putting a puzzle together and she began telling me a story. I glanced away for just a second and she said, "Mommy, are you being an active listener?"

She seems to be taking in a lot at school and everyday she comes homes with lots of stories including learning to play "Simon Says" and the new friends she is making. She really seems to like her teacher. She has had trouble with some of her feedings at school for which we are making adjustments. The only really tough part about her and school is getting her there.

Every morning we have a major battle getting her out of her pajamas and getting her dressed. She loves to wear her jammies! And she must like me to wear mine as well because as soon as she notices I've changed from my pajamas to my clothes, the battle begins. She knows it's soon time for her to get out of her pajamas and into her clothes. She cries and screams, "I want to wear my pajamas! I don't want to get dressed!"

This morning, because we actually had extra time, I gave her a five minute time out for her antics. It didn't help. I tried sitting with her and explained that none of the other kids wear their pajamas to school. She continued to cry and scream about wanting her pajamas back on so as a last resort, I turned the TV on to Super Why and that did the trick. The music instantly distracted her and she stopped crying and even smiled.

She looked at me and asked, "Mommy what are you wearing?" She likes it when I describe what I'm wearing and then describe what she's wearing. I told her we both had two white stripes down the sides of our pants and she said excitedly, "Mommy, we match!" It was as if I turned on a switch that made Faith instantly forget all about her pajamas. When I told Rob about this, he said it sounded like she is just trying to give me a hard time. But why, why, why EVERY morning?

Hopefully she will get tired of fighting her pajama war and surrender each morning to getting dressed for school. And hopefully I will retain lots of patience and my sanity until that day comes!

Wednesday, May 12, 2010

Timeout!

I honestly don't think people believe me when I tell them, yes Faith does get mad and yes, she does throw tantrums. They look at Faith and see a sweet, well-behaved little girl who can do no wrong. HA! Yesterday, though, Faith herself told everyone in the therapy waiting room that she had to have a timeout. Of course they had to believe her, because Faith is too good of a girl to lie about something. (Or so they think!)

It all began when I told Faith we had to get ready to go to therapy. She was really into her DVD she was watching and didn't want to leave. "I'm not going to go, I'm not going to go," she yelled at the top of her lungs. I struggled to get her out of her chair because she needed to be changed before we left. She cried the whole time I was changing her. Then I attempted to get her back into her chair. She recently learned this new little trick that if she kicks her tone in as hard as she can, she becomes stronger than her mom. It is impossible for me to bend her or even move her when she's like this so I had no other alternative than to lie her on her blue foam mats in her bathroom, shut the door and give her a timeout.

When I went in to get her, she still hadn't completely calmed down. It took everything I had to lift all 45 pounds of her, fight her tone and get her in her chair. This time I learned my own little trick. I locked the wheels in, sat her somewhat in her chair and squeezed her lap belt around her. I couldn't get her feet buckled in but at least she was in her chair - her positioning was probably not therapist-approved but at this point I really didn't care. I couldn't get her coat on so we left that off and away we went.

She cried all the way down the hall, down the elevator and even in the car. When we got to therapy she was so excited to see everyone that she forgot she was mad about not wanting coming in the first place. She told one receptionist that she got a timeout, then went on to tell the other two receptionists all about it. I think she was trying to get sympathy, but they were in more disbelief than anything. When her occupational therapist came out to get her, she had to relate her sad tale all over again.

As soon as Faith left the room, I sank down in a chair, had a much-needed drink of water and thanked the Lord we got through that one.

Friday, April 30, 2010

A Rough Week

I don't usually use the old cliche, Thank God Its Friday or TGIF but today I really am thanking the Lord it is Friday. This week has been a bit of a rough one for the whole Bousfield family.

Monday - Faith had the day off from school for an unused snow day or something and thank goodness she did because she woke up at 6:30 a.m. throwing up. After getting her changed, me changed and her bed cleaned up, she did a repeat about 30 minutes later. She continued to do so until mid-afternoon until there was absolutely nothing left in her poor little tummy. Later that afternoon, she seemed to be feeling better so a gave her a mixture of pediasure/water and she kept it down.

Tuesday
- Faith and I woke up to find Rob at home on the couch. Now he was throwing up and had called in sick. I kept Faith home from school to make sure her feedings were going to continue going okay. Although tired, she did make it to occupational and speech therapy in the afternoon but ended up having a diarrhea-like diaper that her poor OT had to change because I stepped out to run an errand. (Thanks, Nicole!)

Wednesday - I had to wake a sound-sleeping girl to go to school. She was not a happy camper. I knew she was going to go into one of those crying fits that lasted all the way to school so I tried to ease her into getting dressed. I sat with her and gave her lots of kisses and hugs. But we were quickly running out of time and I had to get her dressed and ready. Sure enough, her crying fit started and lasted all the way through me combing her hair, brushing her teeth, putting her orthotics on and getting her feeding ready. It it had not been for a sweet little boy in the hallway, she would have continued crying. But her curiosity had been piqued by the little boy and his mom and baby sister so we made it down the elevator in peace.

Thursday - Faith decided it was time to get up at 4:30 a.m. and stayed wide awake until 7:00 a.m. at which time she finally went back to sleep. I decided to let her sleep and didn't send her to school. That afternoon, I felt a migraine trying to sneak its way inside my head. I popped two advil and drank some strong coffee. After my vision cleared, I was able to get Faith to therapy where she went swimming and had physical therapy. She had sort of a tough time in PT because she was tired and Jackie had her practicing going through doorways in her power chair, which is not her favorite PT activity. By some miracle, my migraine never came completely into fruition that afternoon.

That night, I arrived home from my small group Bible Study to find Faith and Michelle in the bathroom, where Faith had thrown up. This time though, I think it was due to the fact that she was trying to have a bowel movement during one of her feedings, which sometimes happens.

Friday - 2:00 a.m. Faith is awake. I am confident I can get her back to sleep but to no avail. I begin to feel sharp migraine-like pains in my head. To my dismay, Faith began talking and wanted to get up, which woke Rob up. While we struggled to get back to sleep, Rob stayed up to watch TV. Finally, at 5:00 a.m. Faith fell asleep and didn't wake up until 10:30 a.m. Another day of missed school.

There are many theories by me, my friends, Faith's therapists and her pediatrician as to why Faith isn't sleeping well. One of which is that the tightness in her muscles is making it uncomfortable for her, which means her botox is wearing off (she gets injections in her legs every six months to help those muscles to relax). More frequent botox may be the answer. She may also need another phenol block, which is a procedure done where they block off some nerves in her legs. The nerves will regenerate, which is why another procedure may be needed. Other suggestions offered have been massage therapy, a visit to the sauna, see a chiropractor and/or stretch her legs more than twice a day.

Another theory is that her sinuses are bothering her. Last week she went to get another x-ray of her face and it showed there was still some congestion on one side of her nose. We continue to give her allergy medicine.

At this point, I'm not sure what the answer may be. What I do know is that this has been very challenging for our whole family and I continue to pray and seek God for his strength, grace and guidance on how to care for Faith and to help her sleep better.