Faith's Mom's Blog

This gift given to me Seven years ago... Not given swaddled in pink and laid close by my side. Instead placed in a see-through box helping to breathe breaths of life. A single touch lasting only seconds not to be seen for several hours. Seven days later, finally in my arms to hold. This gift given to me so undeservedly... Did God really know what He was doing Giving me this treasure for which to care? Thankful. Blessed. These words do not even begin to express what I feel, what I know, what I have. Tough times, yes Challenges, of course. But still joy And love...so much love. Seven years ago This gift, given to me... My heart, my soul forever changed. Happy 7th Birthday Faith. You are loved!

Faith was so excited to go to school today because she got to wear her pajamas!

This month has been crazy with appointments, meetings and unfortunately for me a bit of sickness as well. Here are some tidbits from the last week or so. Last week I went to the doctor and was diagnosed as having walking pneumonia. She prescribed some heavy-duty antibiotics so along with taking those, I took any opportunity I could to sleep and rest. Now that I have my energy back, I need to make up for lost time especially when it comes to cleaning and organizing! We had our first parent/teacher conference with Faith's teacher. Hard to believe she has been in school for nine weeks already! We met with her teacher along with her special education teacher, her speech therapist and occupational therapist. They all said she is such a joy! She is doing really well with knowing her letter sounds and learning some sight words. She's also doing great in her power chair at school. The only issue they have had is that she doesn't seem fully supported in her chair and they find h

The Healing Rooms is a Christ-centered prayer ministry Usually on Mondays, Faith and I head over to the Healing Rooms of the Northern Plains for prayer. Every once in a while it works out for us to go as a family. We have been going there ever since Faith was a baby before we even lived in Bismarck. We have become good friends with the directors as well as many other prayer team members. It is a wonderful place of peace and we feel so blessed to be able to go there for prayer. Just yesterday, Faith and I went and were very blessed. In the little "waiting room" we filled out our prayer requests and then the receptionist took them back to a prayer team. I had requested prayer for Faith's left hip. Because of the high tone in her legs, her left hip is slowly being pulled out of its socket. One of our options to help this is to get a baclofen pump inserted that would administer medicine to her spine to help loosen her muscles. It is a huge decision and I am fearful to d

As I sat there, listening to the four of them talk, I asked myself, "How many professionals does it take to figure out what's going on with my pacemaker?" I was thankful for the comfy chair I was sitting in because it looked like this was going to take a while. All I could do was sit there and listen to them talk about me. It's not like I could go anywhere since I was all attached with leads and a big magnet on my chest. I didn't fully understand the terms they were throwing out - P-waves, QSRs, farfield waves, etc. I did however understand the part where they were trying to figure out if my heart was going into atrial fibrillation. This whole mystery had begun in early September when I went to the pacemaker clinic for a routine checkup. A few days later my cardiologist from Mayo called and asked how I was feeling. It appeared I was having some arrhythmia. He wanted me to wear a 24-hour holter monitor to try to figure out what was happening. Because of a few

There's a blog I read called Caleigh's Corner about a little girl with CP. Her symptoms are similar to Faith's except that Caleigh is nonverbal. One of the posts discussed Caleigh having her own iPAD along with a special language app to enable her to "talk." I saw the photos of Caleigh with her iPAD and thought how awesome that would be for Faith to have her own. Then, a couple of months ago, during a visit with friends, Faith discovered the Apple iPAD for herself. I saw her with an app called Pocket Pond and how she could press the screen to make a splashing noise and the water ripple. She loved it! She also checked out a piano app where there are the actual keys of the piano. After she was done looking at it, she looked at me and said in the sweetest voice, "mommy can we please take that little screen home with us?" I discussed the prospect of Faith having her own iPAD with her speech and physical therapists and they both agreed it would a great

Okay, so I've officially given up on trying to get some sleep. Actually, I did manage to get about 20 minutes of shut-eye while Faith was being mesmerized by Caillou. Faith and I have been up since 5:00 this morning. To make matters worse she didn't fall asleep until 11:00 last night. She has a cold and when she has a cold she just doesn't get much sleep. Unless, I found out today, she is at school. I took her to school this morning because she was laughing her head off at Bert and Ernie on one of her DVDs and she seemed pretty chipper, despite her plugged up nose. So then about an hour after bringing her to school, I get a phone call from her aide saying her teacher suggested that Faith come home because she was dozing off in her chair. Faith? Falling asleep in her chair? What? It was hard to believe. When I got her home, I tried twice to get her to take a nap but to no avail and now, at 3:00 p.m. she is still wide awake, just as happy as can be. Sometimes my daughter

Today I find myself struggling. I have been on the verge of tears all day. No, it's nothing to do with Faith. I'm going through a little 'blip' with my own health. Strange, even though I know I have a heart condition, I don't really think about it much. I take my daily meds and that's about the extent of it. I'm more concerned about Faith and how she's doing in school, at therapy, with her digestion, with her stretches, with her learning, the list goes on and on. There is little room to think about me. As is the norm, I think, not just for moms of special needs children but all moms. It all started last week when I went in for a routine pacemaker check to see how much life was left on my battery. It was good news - still about 16 months left to go, which means no trip to Rochester anytime soon for a battery replacement. Then early this week, my cardiologist from Mayo calls and asks how I've been feeling lately. Apparently there was an arrhythmia ca

It was a little cool this morning, with the temp barely above the 50 degree mark and the sky was threatening rain, but that did not deter these Centennial first-graders from having fun at the Pumpkin Patch! Mrs. Reim's first grade class  Sittin' on some big square bales  The horses were so beautiful and gentle  Who is that peekin' through the window? Going on a bear hunt... Hay Girls!

Faith loves chocolate cake! What a crazy week this has been. We have had many appointments and meetings this week but I'm only going to mention a few of the more important ones. We had Faith's IEP Meeting (Individual Education Plan) which is a huge meeting involving all who work with Faith at school to ensure we are setting up proper goals for her and working with her to attain those goals. If I count correctly, there were a dozen people seated around the conference table - all who thankfully have Faith's best interests in mind. Rob could only be there on his lunch break so I was a little nervous at first when he wasn't there because I was worried I was going to say the wrong thing or answer a question wrong or something. But thankfully when Rob showed up, my nerves settled. They all talked about standardized testing and how that really wouldn't be fair to Faith considering her physical limitations. In the end we as a team decided to for-go any type of testi

Move over Denise Austin! About three years ago, on New Year's Day I decided 2007 was the year I was going to start exercising on a regular basis. So, like many others who had made the same resolution, I ran to Wal-Mart and bought the latest exercise DVD. It was a dance/exercise video with Denise Austin. I later purchased her Boot Camp one as well. I had no idea at the time I began the exercises that Faith would want to watch the DVDs for entertainment. And really, if you think about, it makes sense. Lot of repetition with lots of counting - just right for kids! Because Faith has watched them so many times, she pretty much has them memorized. This can be sort of comical like the time she went to preschool and told her speech therapist to squeeze her buttocks. Or like when I took Faith to physical therapy and she told Jackie she was ready to do her active isolated stretches. Jackie was pretty impressed! When Faith isn't in the mood to do her stretches at home, she gets mot

Soon Faith will be going along with her first-grade class on a field trip to Papa's Pumpkin Patch. I'm sure there will be a few more trips to the Patch as a family. Isn't Fall a great time of the year?  

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

Faith and I started the school week on Monday by attending a meeting with her special education teacher, both of her instructional aides, her teacher and a nurse. The objective of the meeting was to set up a feeding plan for Faith. Since she will be in school full days, she will need to receive two feedings at school plus I want her to take part in snack time and be with the other kids in the lunch room. Considering Faith's hefty schedule, it took a lot of thinking to include all of this in her day. We came up with a plan and if needed, we'll make adjustments as time goes on. I love that everyone who works with Faith puts her needs first above all else. Wednesday, Faith and I went down to the school for their open house. Faith brought all of her supplies to school and got to see her teacher and her classroom for the second time. She was excited to see her custom-made desk again. We even went to visit her Kindergarten teacher, Mrs. Steckler and her summer school teacher, Mrs.

It's that time of year again - time to make major decisions regarding Faith's school year. Last year we had to make the huge decision of Faith attending Kindergarten for half days or full days. We decided half days would be enough for her, considering she still had therapy sessions at MedCenter in the afternoons. Looking back, I think we definitely made the right decision. This year, we are looking at Faith attending school full days. With that decision made, it opens the door for many other decisions to be ironed out. Some of those have been very difficult decisions and as we make them, I find myself wondering if we're doing the right thing. For instance, Faith has been seeing her physical therapist at least once a week since she was six months old. I have always dreaded the day that we would not have Faith see her anymore. Well, that day is coming. We decided to for-go physical therapy at MedCenter, until January anyway. We hope that by cutting PT from her schedule at

The Importance of an Individual Education Plan for Your Special Needs Child

Look at those long legs! Every where we go, people who know Faith comment, "I can't believe how much she's grown this summer." We can't believe it either! We just weighed her the other day and she weighs 48 pounds. 48 pounds!! That's so unbelievable to me as her weight has been an issue for so long but finally she is starting to fill out more and she even has a roll in her tummy! I also tried to measure her while she was lying down and as far as I could tell, she's about 47 inches tall - almost four feet! Rob and I have had to make adjustments in the way that we carry her and bring her from room to room. We have to remember her legs are longer so we have to sort of turn sideways when we carry her into the bathroom or into her room. Every once in a while we forget how long she is and bump her feet on the wall or the doorway. This summer we have had to adjust her chair and need to adjust her stander as well. Just out of curiosity I looked in my baby b

Faith loves Sesame Street and has gone to Sesame Street Live for the past two years. Both times she was a little tense during the whole show and startled during the loud, sudden noises. Even through the tension and startling, she still seemed to have fun. But because of her startling, I wasn't sure if I was going to take her again. But then when I asked her if she wanted to go, she became very excited so I purchased the tickets. All day Sunday she was ready to go to "the big building," (her name for the Civic Center), for Sesame Street Live. The show wasn't until 4:30 so she had kind of a long wait. Finally, the moment arrived and we drove down to 5th Street for the big event. When we got into the auditorium, Faith got very nervous and became very tense. Our seats were on the floor about seven rows from the stage. An events coordinator tried to get us closer to the stage so Faith could see better and while I appreciated his consideration, I said it would be bette

Today was the dreaded day. Faith's botox appointment was at 12:30 and now, thank goodness it is over. She is happily at home watching one of her favorite Elmo DVDs. While we were getting ready to go, she asked who we were going to go see. Usually I volunteer this information but I wasn't sure what to say to her. I told her we were going to see Danielle (who helps Dr. Eggert, the one who injects the botox). Faith loves Danielle and I think the feeling is mutual. She asked what we were going to do with Danielle and I told her we were going to talk to her. Then Faith asked, "Mommy are you going to be there with me the whole time?" She knew something was up. Danielle met us out in the waiting room and we went back to her office. She applied some topical ointment to Faith's skin that would help lessen the pain of the needles. Faith was totally fine with that. We had to wait about fifteen minutes and during that time I tried to explain to her that Dr. Eggert was goi

The nice summer weather makes it easy to take Faith out and about and being the little social butterfly that she is, she loves to go visit people. The month of July proved to be quite the month for socializing, as you can see by the photos below. We enjoyed seeing Faith's aunties Tesa and Dawn and also Faith's cousins, Donnie and Preston. Also, uncle Robert who is taking the photo! Faith really likes to visit with Dave and his wife Lisa but she might like their dog Ginger even more! Faith enjoys visiting with Kimberly and her sister, Melanie Faith says good-bye to Kimberly and Matt before they move to Kansas Faith enjoys her first campfire with some friends Faith loves seeing her Grandma and Grandpa!

Yesterday, Faith cut her little toe. Rob was in the back room with Faith and I was in the adjoining bathroom taking a shower. Rob had put Faith on the floor beside the door so she could talk to me while I was in the shower. Faith was yelling, "Mommy can you hear me?" I yelled back, "YES!" Then when I got out, I put on my robe and opened the door. Faith got so excited and starting giggling. "Did you have a nice shower?" She asked. She was acting like her normal cheery self so I was surprised to look over and see bright red blood on the floor. Immediately, I bent down towards her to find out where she hurt herself. I saw blood on her toes on her left foot. I called Rob over and we tried to wipe the blood away so we could figure out where she cut herself. It wasn't until Rob and I started fussing over her that she realized she had hurt herself. While Rob picked her up and held her, I went to get bandages and other first-aid supplies. The blood

Faith loves to bake. And as she informed her respite care provider the other day, "I'm really good at mixing!" She likes to watch all of the ingredients go into the bowl, and then I help her stir it all together. She watches intently as I put the baked goods - usually muffins or cookies - into the oven. I turn on the timer and she knows our creation is ready when the bell goes, "DING!" I'm not sure if it's a good thing or not that I don't really bake all that much. Probably better for weight control but those baked goods sure are yummy with a cup of coffee. Faith still gets her baking time in though as all of her respite care providers have baked with her at one time or another. One of her providers even bought her the cutest little apron. Yesterday, while Kimberly was watching Faith, she informed Kimberly that she wanted to make something in the kitchen. So she and Kimberly searched in the pantry for something they could make. Aha! A little bo

Growing up, I really never thought about having children. The fact was, my cardiologists always told me I would never be able to have a baby. It never really bothered me. Instead of having children, I figured I would just have cats and dogs. Seriously, I loved animals and the pets I had while growing up gave me great comfort and lots of joy. Then one day, as a twenty-four year old, I went to visit a co-worker who had just had a baby. When I left after seeing my friend and her tiny little girl, I felt sad that I would never be able to have that experience. Fast forward two years. Due to the heart surgery I had when I was 25, I was doing very well, healthwise. I was also seeing different doctors - those from the Mayo Clinic in Rochester instead of those in Minneapolis. These cardiologists told me they had success with women who have had the fontan surgery having babies. So, after getting married in 2002, my husband and I decided to go for it. When I did find out I was pregnant. I w

We do not travel with Faith very often. Once had to take her to Minneapolis because Rob had an interview with the INS and his wife and child were required to be there. She was only about 10 months old at the time. We also flew to Toronto for Christmas when she was fourteen months old. Both of these trips took place pre -wheelchair and pre -feeding tube so it wasn't so bad. As she got older, however, she attained more equipment and it became more and more difficult to travel with her.   There was one trip where I had to go to Rochester for possible gallbladder surgery and we actually rented a jeep in which to fit all of our stuff. The only vehicle we had was a 2001 Hyundai Elantra . It was January and very cold. We took Faith to the Mall of America (where she is shown to the right getting a feeding) so we could try to warm our spirits on such a freezing cold trip. Two years ago, we flew once again to Toronto. It was a nightmare and we vowed never to do this again. Faith had her K

It's one of the most anticipated events of the summer. We wait and wait and try to be patient. We moms question each other why it hasn't happened yet. We begin to stalk the school, driving and walking by even when it's well out of our way.  Then, finally, it's there. We see it! The white paper with typed names posted on the school door. The class list is out! Moms, dads and kids alike rush to read the list. And then everyone walks away, some with smiles on their faces while others with tears in their eyes. I was one of those with tears in my eyes as I looked at the class list. Faith did not get the first grade teacher I was hoping she would get. She did not get into the same classroom as one of her best friends. And she will only know a few little girls in her class. BUMMER! I felt a little better after talking to one of my good friends. Her son had the teacher that Faith will have this fall. She said she believes Faith will do well with her. I had been hoping Fai