Faith's Mom's Blog

I think North Dakota forgot all about spring this year and just went right into summer. It seriously seemed like one day the ground was still brown, the trees still bare and there wasn't a robin in sight and the next day was the exact opposite. While everyone was certainly getting tired of old man winter, we weren't ready for 90 degrees! Faith enjoying being outside at Michelle's with her ducks! Besides 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 began to struggle. 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 and then in May the kids were getting a little more rambunctious than usual, so it was harder for her to be ar

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. Faith is thankful for: Mommy and Daddy Wheel of Fortune Big hugs and kisses Having a sleepover with her grandma (we haven't actually done this yet,

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 or going to the movies. 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 a

Have you ever 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 every day at work to help me stay awake. It didn't help that my thyroid was out of whack. Eventually I

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, it was a major inconvenience. 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 becau

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

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 every day she comes home 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 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 crie

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 super rough week for Faith and her parents. 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 and water and she kept it down. Tuesday - Faith and I woke up to find her dad 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 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 p