Showing posts with label special needs. Show all posts
Showing posts with label special needs. Show all posts

Sunday, October 30, 2022

Faith's Fun Birthday Week

Yes, it's true that Faith has been celebrating her birthday ever since last week! I mean, a girl only turns 19 once, right? And this is the last official year of her being a teenager! Last Tuesday when she woke up she said, "I can't believe I'm 19 already!" She was super excited because not only was it her birthday but it was Tie-Dye Tuesday at her day program and she was bringing cupcakes to all her friends there! 

During the drive to Mandan, she asked if she was going to get any flowers for her birthday. I kept telling her I really didn't know. (She is still upset with me for throwing out the flowers that her cousins had gotten her in May for her graduation.) 

I wasn't planning on getting her flowers, but I was pretty sure she would get at least one bouquet. She had a blast at her day program and on the way home she said she couldn't wait to see the apartment (she knew I was going to put up decorations for her.) 

She was so excited to come through the door and not only see birthday decorations but one beautiful bouquet of flowers from her respite care provider. (Plus her grandparents had brought another bouquet!) As we waited for our birthday party guests to arrive, she had fun watching and listening to birthday messages that friends and family had made for her. During her party, we opened gifts, ate some chili, and had cupcakes and ice cream.  

Me and the birthday girl!

Faith with Grandpa and Grandma

Dawn barely made it in the group shot!

The perfect shirt for T-Rex Thursday!

One of Faith's staff at her day program even did her hair for her!

Faith with her gifts and cards.
As you can see in the pictures, one of her gifts was a t-shirt with a Tyrannosaurus Rex on it.  On Thursday at her day program, they have T-Rex Thursday where the staff and participants can wear things with this kind of dinosaur on it. She only has one T-Rex shirt, so I found a few more for her on Amazon. When I explained to everyone why she needed more T-Rex shirts, my sister got so excited. She had helped to come up with that day when she worked there years ago! She was so happy to know they were still doing it!

The next day we went to therapy, where she has 3 sessions two days a week. She has occupational therapy, physical therapy, and we just started speech therapy. There is also a day where she has physical therapy before she goes to her day program. Not only did we deliver cupcakes to all the therapists at Kids in Motion, but she also got to get in on their wacky Wednesday by taking a group shot with them. Even though she only works with three of them, she loves seeing all the therapists (and admin assistants) and getting to socialize with them. 

They may be wacky but they are pretty amazing!! 

 Earlier in the week I had asked Faith if she wanted to go on a trip for her birthday. She had been asking to go on a trip over the summer but it just didn't work out. She was excited and asked where we were going. I told her we could go to Fargo and go to a Bison game! The only thing is at that time I didn't actually have tickets, because as I learned that reserved accessible seats were kind of hard to get. Thankfully, I was able to call the day before the game when they said more seats would be opening up. I got 2 tickets for us and 2 more for our helpers - my sister and great niece! 

Despite having a moment of high anxiety about the trip the evening before, she was raring to go the morning of the trip! We managed to get the van loaded up and then just cruised over to my sister's to pick her and Gracie. We made it to Valley City before stopping and still had plenty of time to get to the game, or so I thought. 

We arrived around 1:30 - just 30 minutes after the doors had opened and all the accessible parking spots were already filled! We managed to find a spot that wasn't too far away. I sort of parked in the middle of two spots so that we still had room to let the ramp down. I figured someone would be mad for taking up an extra parking spot, but there wasn't much I could do. Like my sister said, they need way more accessible spots! 

After unloading, we made our way to the FARGODOME but I had to run back and get Faith's food, which I had put in the back so it would stay cold. After we got inside, we needed to go upstairs where the family rooms were so I could get Faith changed and her feeding going. (Way to go FARGODOME for having 3 private bathrooms with adult-size changing tables!) 

After all of that, we ended up missing the very beginning of the game where the players come onto the field. It's probably good that we missed it though, cause it was super loud! They play "Thunderstruck" by AC/DC, plus they turn off the lights, have flashing green and gold lights, and several loud booms. I think that might have been too much for Faith! 

We found our seats just after the first quarter started. It's funny because when I watch football on TV, Faith could care less, but she really liked the whole live experience! We were sitting near some of the opposing team's fans (Illinois State Redbirds) so when they cheered, she would cheer. I had to try to help her know when to cheer. She got the hang of yelling "first down," and loved the frenzy of when we scored. (She could have done without the two loud booms after each touchdown). 

We had great seats!!

Right behind us!

These 3 had never been to a Bison game before!

So much fun!

 

We ended up leaving right before the end of the 4th quarter because I knew she was getting tired. Plus, I kinda wanted to get ahead of all the traffic. (NDSU won by the way!) On our way to the hotel, the directions on my phone took us this really weird route where we were going through all these neighborhoods and side streets, but we eventually found our way to our hotel. (I wanted connecting rooms and the only hotel that had them available when I called was one in way southwest Fargo). 

I was thankful my sister could come along because I needed her to help me lift Faith in and out of her chair. I would never be able to travel alone with Faith on a long trip or do an overnight by myself because I simply can't lift her.

On Sunday after getting lost again, my sister was able to get the Popeye's chicken sandwich she was craving (she got me one too and it was really good!) All in all it was a great trip and I'm glad to know it's totally doable.  Also, Faith had so much fun she wants to go again sometime! I'm proud of Faith for being such a great traveler and for doing so well with her 5-year old second cousin.

And now that her birthday is over, I think we are both looking forward to having a routine week!

Sunday, November 1, 2020

October: A Memorable Month and Birthday

Oh. My. Goodness. What a month! It's certainly been challenging, but thankfully there were a few bright spots to help us through. At the very end of September, both Faith and I came down with colds. They would not go away! Faith was really stuffed up and seemed pretty miserable. I thought she might have a sinus infection so I took her to the walk-in clinic. Although I didn't think we had COVID, I asked to be tested just to help give me a peace of mind. 

They only had the nose swab available. I was nervous about it being traumatizing for Faith. As we waited for the nurse to come back in the examination room with the test, I prayed for Faith that she wouldn't have a tough time. I should have remembered to pray for myself! 

I told Faith I would go first so she would know what to expect. When they stuck the swab way up my nose, I nearly started crying. It gave me flashbacks to when the breathing tubes got pulled out of my nose following open heart surgery. It was sort of the same icky, awful feeling.

Next, it was Faith's turn. The nurse was fully expecting Faith to fight the swab going up her nose. She held Faith's hands while I held her head in place. The lab technician put the swab up Faith's first nostril and I counted to 10. The lab technician did the other nostril, and I counted to 10 again. She didn't try to fight it or anything. She was so brave and didn't even cry! I was very proud of her! I told everyone afterward that she had done better than me. 

My brave girl!

It took four days for the test results to come back, both of which were negative. Faith did have a sinus infection so she began a round of antibiotics. It took her about six days of being on the meds before she finally started feeling better. 

A couple of weeks after she was finally better, I had to take her in to get the Mic-key button for her feeding tube replaced. When we had tried to put in a new button at home, we found out it was defective. Thankfully we had a second one, but that one was defective as well! We ended up having to put her old one back in. Because of this, the skin around her stoma became very red and sore. When I took her to the surgeon, she told me it wasn't infected, but there was granulation tissue that was beginning to form. She replaced it without any problem and prescribed an ointment for her skin.

During all of this, I was busy trying to finish raising funds for our new van. I really wanted to raise enough so we could get it for Faith's birthday. Amazingly, we ended up raising about $25,000!!! I am also applying for funds to help cover the conversion cost of the van. I will do a separate post about the van, but long story short, my brother Todd found one for us at Cummings Mobility and had it delivered to our front door 2 days before Faith's birthday!

Thanks to all the donations, New Wheels for Faith became a reality!

While preparing for the van delivery and Faith's birthday, I found out Bismarck was supposed to get our first major snow storm. I was concerned the snow was going to deter our birthday plans. Thank goodness we only ended up getting about an inch of snow but it did dip down to about 14 degrees F.

Even though the weather cooperated, the elevator in our building did not. Two days after I had taken Faith to get her button replaced, the elevator went out. Needless to say, I was pretty devastated. Without a working elevator we would not be able to get Faith downstairs to see her new van when it arrived. We also wouldn't be driving around to see her family and friends on her birthday. (A pandemic-friendly birthday plan I had come up with).

The van was still delivered, but instead of being able to get inside, Faith could only watch out the window when it arrived in the parking lot. We tried to make the best of things and had a tiny party in our apartment with cake and ice cream. For her birthday weekend, she did video chats and phone calls with some of her best friends and other family members. 

Happy 17th Birthday!

Faith with Grandma and Grandpa 



Faith's cousin and favorite dog even came to the party!


Faith's beautiful birthday flowers!

We went through the rest of the week with no elevator, and it is not supposed to be fixed until Monday or Tuesday. I have been in contact with our building manager and even the regional property manager. I think they are finally beginning to realize that we are in need of a new elevator! 

Despite some of the challenges and disappointments, my heart is filled with gratitude. I am so thankful for our van. I promise to do another blog post as soon as Faith is able to get downstairs and we go for a spin! I'm also thankful to the friends and family who have supported us during this challenging month and also for the many prayers. 

If nothing else, Faith's 17th birthday was definitely a very memorable one!

Saturday, September 12, 2020

New Wheels For Faith


Faith in her "new" van in 2011
It was back in August of 2011 that we got our first accessible van. Before that, we had a purple special needs car seat called the "Special Tomato." Eventually she got too big for her special tomato and we needed to graduate to an accessible van. We were thankful to have found one in Bismarck for a decent price. While it suited our needs, there were still some concerns. For one, the electrical system was really wonky, which affected the ramp. 

 Even with the weird electrical system, it got us to where we needed to go. We even had some fun family adventures like driving all the way to Toronto and back, and also to Winnipeg. The van also got us to some of Faith's medical appointments in Minneapolis and Fargo.

Despite its quirks, the 2006 Dodge Caravan was a good van. Except for when it rained. It seemed the electrical system went super berserk when it rained. One day we were on our way home from a physical therapy appointment in the pouring rain. We were driving down Century Avenue (one of the busiest streets in town) when the van stalled at the light. The van refused to start. Thankfully, a guy in a pick up truck who pushed heavy equipment around for a living, was right behind us. He managed to push our vehicle with his to our apartment. 

Faith on a trip to Fargo a couple of summers ago.

We put thousands of dollars into getting the electrical system fixed, but the only thing that seemed to help was to disconnect the ramp. This made transporting Faith very inconvenient, to say the least. While Faith's dad could still push her chair up into the van, I could not. We muddled through, however. It just meant that I could not really take Faith anywhere by myself. 

Eventually our air conditioning also went out. I thought it might simply need to be recharged but this was not the case. It was going to cost several hundred dollars to fix, so we just went without. When we had a choice, we chose not to take Faith anywhere on really hot days. Then there is the issue with the battery and not starting well in the winter. There are other issues, but I think you get the gist of it. 

I don't know if Faith's van will make it through another winter!
 

"Thanks everyone!"

As you can see, we have needed a new van for a while now. When I discussed our van issues with my brother Todd a while back, he suggested doing an online fundraiser. I honestly didn't know how I felt about asking other people for help to fund a new van for us, especially with the whole COVID mess going on and it being a hard time financially for many. After thinking about it for a long time, and praying about it, too, I felt we didn't have any other choice. Todd told me to write something up for a GoFundMe and he would take care of the funds, etc.

When we set our goal of $29,000, Todd was very optimistic about reaching it. I knew my brother was an optimist. I tend to be the opposite (sometimes). I thought it would be nice to reach $10,000. Needless to say, our efforts thus far have far surpassed my hopes and expectations!



I know there are many people in need of things right now, which is just one reason I'm so blown away by everyone's generosity! All I can say is THANK YOU!!! 

 

For those who have given, shared, or said a prayer, may this proverb ring true in your life: Whoever brings blessing will be enriched, and one who waters will himself be watered. Proverbs 11:25 (ESV) 

By the way, at the time of this writing, we are at $16,001 between on and offline donations, as well as 500 shares! We are well on our way to meeting our goal. Also, it would be a dream come true for Faith to have a new van for her 17th birthday, which is at the end of October!

Click here to donate to #NewWheelsForFaith or to share this fundraiser.

 


Thursday, April 28, 2016

I Believe in Miracles

Twelve years ago in late April, we were given the dreaded news that our daughter had spastic quadriplegia - the most debilitating form of cerebral palsy. 

I will never forget looking down at my six-month old baby, fast asleep in my arms, while her doctor talked about the possibility of her being in a wheelchair as she became older. 

At the time, it was not like me to show such public displays of emotion but on that day I couldn't hold back the tears. In the days that followed I had so many questions. 

Of all the questions though, there was one that I asked more often than others. "Can God heal my daughter?" I came to believe that He could, even though I knew it would take a miracle. 

Faith shortly after we brought her home from the NICU where she had a 73-day stay
By definition a miracle is, "an unusual or wonderful event that is believed to be caused by the power of God." When a true miracle occurs, there is usually no scientific explanation for it. I love these phenomenons as they are a way of proving not only God's existence but his awesomeness! 

While miracles can take many forms, one of the most exciting is His miraculous healing power. I have heard many testimonies of God healing someone of an incurable disease. I have seen people receive prayer and they were instantly healed. For some, healing isn't always instantaneous but rather a process. It's really however God chooses to do it! 

 Not too long ago I was preparing a message for New Life's Redefinition Cafe service entitled, "Three Things that Can Help Us to Truly Believe 'All Things are Possible with God.'" My second point was that it's not up to us to figure out how God is going to do the impossible. 

As I searched the Internet, I came across an article about a girl who had been diagnosed with an incurable gastrointestinal disorder. She had been in and out of the hospital several times and had to take all kinds of medications. Even though she normally didn't have a lot of energy, her oldest sister had convinced her to come outside and play. After falling into a hollow tree, she went to heaven and returned to earth completely healed. Last week I finally was able to see Annabel Beam's amazing story turned into the movie - Miracles From Heaven. 

Most of the scenes in the movie that caused me to cry were the ones where the mom was doing the best she could to care for her sick child. She had given up hope and even quit praying because she didn't think God heard them anyway. She alluded to the fact that another reason she didn't want to pray is because she didn't want to be disappointed if her prayers were not answered. I felt as though I could totally relate. 

There was a time in my life where I didn't think I'd be able to bear the disappointment of God not answering my prayers for my daughter. When I did pray for Faith, I wasn't praying with belief. I can't pinpoint what changed in me, but somewhere along the way I decided that I was going to believe for Faith's healing and believe wholeheartedly for it.

Faith and I at home after attending a friend's wedding
Admittedly, there are some days I wonder if I should just give up on believing for Faith's healing. But as soon as I get to that level of discouragement, God shows me something amazing. 

One particular evening not all that long ago, I was having one of those discouraging days. A friend of mine had given me the link to a video to watch and after taking a look at it, I began searching the Internet. I really didn't even know what I was looking for until I found it. 

It was a video of a lady who had been healed of cerebral palsy 25 years ago when she was 19 years old. The lady's name is Marlene Klepees and she now goes around the country giving her testimony. WOW did seeing her story fill my heart with hope!


A few people have told me they have had a vision or a dream of Faith either walking or dancing. I truly believe it's possible, and that what He did for Anabel or Marlene, He can do for Faith. Call me crazy but isn't that what faith is truly all about? (Believing first and then seeing). Even though Faith being healed would require a miracle, I truly do BELIEVE.

How about you? Have you ever received a miraculous healing in your body? Do you believe in miracles? I would love to hear about it!

Sunday, February 15, 2015

Faith the Soccer Star

Faith was so excited last weekend when I told her they were having wheelchair soccer again. Her first question was, "Can Adam push me again?" I told her I had no idea if he even went to school at the University of Mary anymore. When we got out there, she was disappointed to learn he had another obligation that day. Everyone assured us Adam would be there next time. She still had fun with a few other guys from the college soccer team who pushed her around to help her play.

In wheelchair soccer, they don't use a normal soccer ball, instead it's more like a beach ball. Normally, the soccer players who are pushing the kids around throw the ball to each other then help the kid they are pushing hold onto it as they try to get into the net. She had so much fun and the faster they pushed her, the bigger the smile on her face.

Ramsey helps Faith with the ball
Faith making friends
Faith having fun with Garrett the goalie
This weekend, despite the fact she was suffering with a terrible cold and hadn't gotten a lot of sleep, she still wanted to play. She was thrilled to be reunited with Adam, who I found out was a junior in college and had come to Bismarck all the way from Ireland.

Although the organization, Dreams in Motion, has other adaptive sports throughout the year for those in wheelchairs and other mobility challenges, I can't convince Faith to try them. (Although, she did try curling once.) They also have basketball, tennis, skiing, sled hockey and dance. Soccer is her favorite and unfortunately they only have it a couple of Saturdays a year, although they might try to get an outdoor game going in the Spring. We also told Adam we would love to see him play when his soccer season starts at school in late summer.

Faith taking a break
Faith and her all-time favorite soccer player
Everyone's a winner!
Dreams in Motion is a great organization for planning these events. I was also impressed with the dedication of the soccer players from the University of Mary who took time out of their Saturdays to help out and spend time with the kids. You can click on the video below to see everyone in action!




Sunday, June 8, 2014

Alternative Therapies for Faith

For most of Faith's life, we have focused on doing some of the more traditional therapies such as occupational and physical therapy in order to help her reach her fullest potential. More recently, though we have been trying some alternative forms of therapy such as chiropractic care and music integration sessions. Honestly, we have seen more progress this past year in trying these different therapies than we had been seeing with years of following traditional methods. You can read HERE to see how Chiropractic Care has benefited Faith and HERE for music therapy. 
Chiropractic care has benefitted Faith immensely
Unfortunately, most insurance companies, including Medicaid does not cover these different types of therapies as they are still considered experimental. One of the local fundraisers does not allocate funds for these alternative therapies for the same reasons. This means we have been paying out of our pockets and it is now getting to the point that we have to decide to quit doing the therapy or keep going with it.

So it is with a humble heart that I am asking for help from the readers of this blog and from those family and friends of Faith to help us in continuing these types of therapy for Faith. If you don't have the funds at this time, can I ask you to pray for us and that God would continue to guide us and give us wisdom on which types of therapies to try, which types might be beneficial and which ones we may need to discontinue? 
Integrative music sessions has helped with Faith's fine motor skills and other areas
Any help you can give in either of these areas would be greatly appreciated. If you do want to help us in our efforts to raise funds for Faith and you would like to do so online please click on the PayPal link on the top right. You will also be able to donate using a credit card. If you don't want to donate online, please feel free to e-mail me. You can find my e-mail address by clicking on 'view my complete profile' and it is listed under my contact into. Thank you so much for any help you can provide and I pray that God blesses you abundantly in return!

Sunday, November 17, 2013

Some Thoughts on World Prematurity Day

November 17 marks World Prematurity Day. One might wonder why awareness needs to be raised about premature births. Well, I can tell you you firsthand that it is a really good thing when more people are aware of the risks and complications, not to mention the emotional toll, of having a baby born too early.

Faith and Daddy
Having a baby born prematurely is not something most expectant parents think about until it happens to them. Most moms-to-be who first learn they are pregnant automatically think they have seven or eight months to prepare for one of the biggest days of their life.

Expectant parents usually have one response when asked if they are hoping for a boy or a girl - "As long as the baby's healthy." But sadly, sometimes that's not always the case - especially if the baby is born too early.

I will never forget the book I was reading shortly after finding out I was pregnant with Faith - "What to Expect When You're Expecting." It was a great resource that outlined what was happening inside an expectant mother's womb week by week for the entire 40 weeks of pregnancy. Some moms, like me, however never made it to the end of that book.

When having a baby born too early, I think it's natural that mom's first emotion is guilt and asks herself over and over again, "What did I do wrong?"

While there are things that mom may or may not have done during the pregnancy, the answer is usually nothing. A mom can do everything right during pregnancy and still somehow end up having her baby too early.  There are also moms-to-be, like me, who know going into pregnancy it is going to be high risk. They are still hopeful and do whatever is necessary for the baby to be born full term.
me and Faith after her her very first "real" bath
We know that full term babies have the best chance at starting life because they have had time to develop completely inside their mother's womb. Babies born prematurely (before 37 weeks gestation) often suffer several consequences including:
  • Underdeveloped lungs which can induce respiratory distress
  • Heart problems like a slow heart rate or even heart failure
  • An eye condition called retinopathy of prematurity (ROP)
  • Bleeding in the brain 
  • Apnea - short or long pauses between breaths 
  • Intestinal disorders such as necrotizing enterocolitis
  • Loss of oxygen shortly before, during or after birth 
  • Longer hospital stays 
  • Severely underweight and failure to thrive
  • Premature birth is the most common cause of death in newborns
It is easy to see why a mom and dad who have just had a preemie feel completely overwhelmed and anxious. But it is also wonderful to look back on your premature baby's first days of life and know how much has been overcome. During Faith's 74-day stay in the NICU, we battled many of the above complications but she came out an overcomer in many areas!
Faith with her doll, Baby Allie, who wears her preemie clothes
There is also another thought I would like to share today on World Prematurity Day. One of the most common arguments for abortion is that if a human being is not viable outside of the womb, all the more reason it should be legal to deny the baby a chance at life. In fact, when the Supreme Court ruled in favor 7 to 2 to overturn a Texas court's ruling on a case called Roe v. Wade, it was stated that "a woman has the right to terminate a pregnancy for any reason before the fetus becomes viable" At this time in 1973, that age of viability outside of the womb was 28 weeks.

But look at what is happening - because of research and awareness even the tiniest of tiny premature babies are able to survive and even thrive! The youngest of pre-term babies are born at 22 weeks and don't even weigh a pound when they are born. Thanks to medical research, we have found a way to keep these micro-preemies alive outside of the womb! This to me is just one more reason to stand for life during all stages of life - from conception to birth!

One of my friends has a cousin in Fargo whose baby was born at 25 weeks and weighed just 10.9 ounces. He was even smaller than most micro-preemies and is known as the world's smallest baby boy. At four years old, he is doing great! I thought today would be a great day to share their story: 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!

Thursday, August 29, 2013

Getting Used to Our New School Schedule

Today marks Faith's 8th day of school and we are all adjusting to a new schedule. Faith has made huge strides this past summer in sleeping better and having more energy so we decided to have her go to school from 9:00 a.m. to 3:00 p.m. 5 days a week. This is a change as last year she did not go Tuesday and Thursday afternoons due to how tired and worn out she would get.
Faith's first day of 4th grade
School starts at 8:30 a.m. but we asked if it would be okay for us to get her there at 9:00 instead. This allows us to more time to get her first feeding into her before she even gets to school. Her aides noticed last year that when we brought her to school without any food in her tummy, she was pretty sluggish and tired upon arrival. Sometimes, after getting her to school she wouldn't start getting her feeding until after 9:00 a.m. which meant, that because she gets a feeding every 3 hours, her last feeding of the day didn't end until 10:00 p.m.

Another advantage to the new school schedule is she has more time to wake up and not have to rush to get out the door. Our mornings are much more relaxed and stress-free than they used to be. It also gives us a chance to change her diaper right before she gets to school. Last year, they had to wait until after her feeding to get her changed and there were times her diaper would be so wet it would soak through onto her chair. This of course was pretty embarrassing for her and she didn't even want to go back to school the next day after having one of these unfortunate episodes.
Me and Faith right before taking her inside for her first day of school
There are a few things we are attributing to Faith sleeping better and having more energy to get through the day. One is the ABM we have been doing with her and another is her chiropractic care and the adjustments she has been receiving all summer long.  Because of both of these new types of treatment, we are noticing her behavior has improved as well.

In the past, when getting ready for school and not wanting to go, she would scream and cry (at the top of her lungs) for at least half an hour sometimes. It took both me and Rob and all of our energy just to get her dressed, put in her chair and out the door.

She still has some mornings where she's not too thrilled about having to get her feeding done before going to school (it's probably because she doesn't get to spend as much time with one of her favorite people - the school nurse who sets up her feedings). Her crying episodes are now usually less than 10 minutes long (sometimes even only a few minutes) before she is able to settle down. And even better is the fact that she no longer screams at the top of her longs - which I'm sure the neighbors are glad about!
Daddy rolls Faith into her new classroom
Besides a new morning schedule, we're also getting used to a new evening schedule. After Faith comes home from school, she is due for a feeding. When I come home from work, I get supper going, we watch Wheel of Fortune and then it is off to her bath. She starts her last feeding between 7:30-8:00 which is a huge improvement from starting at 9:00 p.m.

She's usually in her bed at 9:00 and after reading a bedtime story, she tries to fall asleep. Sometimes this takes a while for her. We often hear her in her room laughing or talking to herself or kicking her legs around. This can last up to 30 minutes before she finally falls asleep. She usually wakes up only once at night and Rob will go in and turn her on her side but again, a huge improvement from waking up several times during the night.
Faith at her desk
We put a lot of prayer into her school schedule for the year and it seems it is working very well for us. It's definitely been a nice and somewhat surprising stress-free transition from summer to school!

Sunday, June 2, 2013

Full of Life

Not too long ago, someone at church commented to me, "Your daughter is so full of life." I have heard lots of positive comments about Faith throughout the years, but this one brought tears to my eyes. To think that my daughter - a nine-year-old girl bound to a wheelchair was full of life - meant the world to me.

Faith's disability causes her to be different from her peers and others around her. She understands this and although she can get frustrated, she doesn't let it get her down. She has a very positive attitude about life. I give a lot of the credit to those who pray without ceasing for her and to Jesus who helps her on her journey each and every day. I truly praise God that someone who sees my daughter sees that she has a joyful life despite her special needs.
Full of joy
I know too well this isn't always the case. Usually, when someone pictures in their mind a nine-year-old who needs to use a wheelchair for mobility, gets her nutrition from a feeding tube, doesn't know how to read and still wears diapers, they would most likely classify that as having a "poor quality of life."

Unfortunately, this is exactly how our culture describes those who do not seem to contribute anything to society. This is where eugenicists have a hay day. And this is precisely why babies in the womb with known abnormalities are aborted.

I'm thankful there are those who see Faith in a different light. It seems wherever we go, we always find someone with whom to interact. Last weekend it was the mom of a little 14-month old boy who seemed very interested in Faith while waiting in the check-out line. Today at Target as Faith and I walked down an aisle, a lady asked me how old she was. Faith was the one who responded, "Nine!" She then told Faith she was just beautiful. Friends of mine who know Faith well tell me they don't see Faith as someone with a disability, instead they see someone with lots of ability.

Supergirls!
I'm curious. How do you view a child when you see him or her in a wheelchair? Do you wonder what happened to cause them to be that way? Do you feel sorry for the child. If so, I know those feelings are automatic. I was the same way before I had Faith. I was even uncomfortable around people with disabilities.

I know it may be normal to automatically think the child must have a poor quality of life. But  please, I'm asking you to try not to make those assumptions. Instead, maybe try to engage with the parent of the child with obvious special needs. There is fear in the unknown but once you know more and gain understanding, I bet you will no longer have such assumptions. And I can assure you, that the parent of the child you just interacted with will be glad you did.  
Faith scooting through the tunnel

Sunday, April 14, 2013

The Perfect Church Service for Faith

Our church service (along with many other services throughout the area) was canceled today because of our spring blizzard. So while I didn't get to go to church, I was still thinking about it! The photos from this post were actually taken from last week's church service. 

Finding “the perfect” church is not an easy thing to do. Especially when you are trying to find one that works well for each member of the family, one of which has special needs. For me the perfect service consists of charismatic praise and worship, an inspiring, truthful message followed by fellowship with other church attendees. For Rob it is different though. He could give or take the praise and worship and get right down to the sermon – the more intellectual the better. Rob likes to take a message he hears and chew on it for days thinking, pondering and mulling it over.

And then there is Faith. She does not like loud and she does not like microphones, sudden clapping or spontaneous "Amens". It has been because of Faith’s special needs and hypersensitivity to loudness that we have searched and searched for a church service that she would be able to tolerate and feel comfortable. 
Faith with Pastor Marc at New Life's Redefinition Cafe Service
In our search for a church, we have gone to many wonderful services in Bismarck and Mandan – including all different denominations such as Lutheran, Catholic, Four Square Gospel, Methodist, and several nondenominational churches. We experienced something positive in each church but none of them seemed like the perfect fit for all three of us. And more times than not, attending church at these services often required sitting way in the back, where it wasn’t so loud and sometimes even sitting in the fellowship hall while watching the service on a big-screen TV. It wasn’t exactly the type of fellowship I personally was looking for.

Finally, last spring some friends of ours invited us to NewLife’s redefinition café service which took place in their office building not far from our home. They assured us the worship music was not very loud and that it was a quiet little service that might work well for Faith. 
New Life's redefinition service - praise and worship
They were right. It is not loud at all. It is perfect. The praise and worship team is often a one-man band with either someone on the piano or someone playing the guitar leading the worship. Instead of being tense, Faith is more relaxed and comfortable with the quieter music and she can now actually enjoy it. Another bonus for her is that there is no microphone required for the little group of people that come to this service. The pastor’s message is conversational and even invites participation. Sometimes there are guest speakers who share their knowledge and gifts on evangelism, healing, art and other topics.

In going to the redefinition service, we have reconnected with some friends from our past and have made new friends as well. At one time, they had a children's service which Faith started going to along with the three or four other kids who came to the service. What makes redefinition cafe at New Life even more perfect – especially for Rob – is they offer coffee (with creamer) and baked goods. What more could we ask for?
Faith makes friends wherever she goes
Since first attending the redefinition service, it has evolved and changed somewhat. The time has changed to take place earlier in the morning and it has even more of a “café” feel to it as we sit at tables instead of rows of chairs. (This makes it easier to enjoy our coffee and goodies!) The worship is the same – just one or two people leading worship – no sound system, just a guitar and amazing music. Unfortunately they don't have the children's service anymore but Faith is just as content to stay with her mom and dad and listen to the message. 

Besides the redefinition cafe service, there is a celebration service later in the morning up north in a larger building. This service includes all of the excitement of a charismatic church service – which I totally love but is a little too much for Faith. It is my hope and desire for all three of us to attend both church services but until that day, we are happy with the redefinition service and feel it is the perfect fit for our little family.
Faith and her dad looking over some church notes