Showing posts with label physical therapy. Show all posts
Showing posts with label physical therapy. 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!

Monday, August 1, 2022

3 Big Events All In One Week

Here it is the first day of August and one thing is certain: last month was a busy one! Both Faith and I had some important appointments, plus she had her 6-month evaluation for her day program. It's so hard to believe she's been there for half a year already.

Faith at the Sock Hop at her day program
 

The Day Program is one of her favorite things in the world. She loves going and I'm so glad they love having her there. She is a bright light and full of joy wherever she goes. She is also full of encouragement, which I believe is one of her God-given gifts! But besides going to her day program and therapy, Faith had some other major events - all of which take place the last week in July!

Big Event #1: Our First Baseball Game

The first was attending our first-ever Bismarck Larks baseball game. We didn't just attend, though. We both got to go on the field where she placed the ball on the mound and then announced into a microphone, "Play Ball!" This opportunity came about through Kids in Motion, where Faith goes to therapy twice a week. They had asked if she wanted to take part and she exclaimed, "Yes!" 

My contact person from the Larks told me I would get 4 free tickets in accessible seating. It ended up working out so that my sister, her husband, and one of their sons (who plays baseball) were going to be coming up from Nebraska so they were able go to the game with us! 

At the ballpark, while making our way to the entrance, I was totally surprised when a Larks fan saw Faith and took off his jersey and gave it to her! I couldn't believe his kindness and generosity! We then found our contact guy, found my sister and her family, and then went onto the field near third base by the team's dugout to get our directions on what to do. 

Faith had to go to the pitcher's mound, deliver the baseball, and then go back to our spot by the dugout while they sang the National Anthem and made team introductions. After that, I had to wheel her back to field. The guy with the microphone explained to her that he was going to count down from 3 and then she was could yell, "Play Ball." She was so excited though, that she didn't wait until the countdown was done! 

Hanging out with the Graffs on the field before the game.

Faith got to put the ball on the mound!

Afterwards, we made our way to our seats. We had never gone to a baseball game together and I honestly didn't think she'd make it through all 9 innings. She totally surprised me by maintaining her enthusiasm until the very end! It helped that the Larks were winning and there was a lot of music, dancing, and cheering. Plus, the Larks mascots came by quite often, giving her a high-five every time.

I have to say I was totally impressed with every aspect of the Larks organization. Not only was the accessible seating in a good spot, but everything was completely accessible. Even the little gift shop had a temporary ramp placed over the door's threshold so I could roll Faith in there. Besides Faith, there was another little girl with special needs who, with the help of her sister, got to make her way around the entire baseball diamond in between innings. I really liked their show of support for the special needs community. 

Having a ball!

Faith loved Merrifeather Lewis!

Faith and Preston in their "22" Larks Jerseys.

Preston getting an autograph.

After the game the entire team stuck around to give autographs. Faith got one autograph while her cousin went all out and had every player autograph the jersey he had tried so hard to win! It was a really fun evening and the weather was perfect at just 78 degrees. Right after the game, we headed home and got ready for the next day.

Big Event #2: Botox Injections at the Hospital 

Despite needing to be at the hospital at 8:30 a.m., Faith wasn't actually in the operating room until 10:30. One part of the delay was getting the right size sling for the lift to transfer her from her chair to the hospital bed. As they were getting her into the sling and then getting her hospital gown on, it was all I could do to jump in and do it for them. I had to remind myself that this was their job! 

Faith has had Botox in the past but it didn't seem to last very long for her. Also, at that time, she wasn't put under for it, so it ended up being a very traumatic experience every time she did it. I just wasn't sure it was worth putting her through all that trauma and then not gaining very much from it. 

Her physical therapist, however, strongly recommended that we try it again to see how she responded. It was her hope that she would be able to tolerate her foot orthotics for longer periods of time. Plus, it would allow them to work more with her legs in order to increase strength and range of motion. I was hoping it would also help her be more comfortable in general.

Faith at Kids In Motion with some of her OT/PT team

Faith with her favorite nurses for her History and Physical the week before her procedure

 The procedure itself took just over an hour. When I went to the recovery I could tell she didn't feel well and asked the nurse if she had thrown up. She said she did a little bit but they were able to suction it out of her mouth. I was a little surprised she got sick, especially considering how well she had done last summer when she went under for her dental work. But I also knew that considering where she was in her monthly cycle, it was normal for her to experience some nausea around this time of the month. 

It took her a while to fully wake up. They kept her there a little longer just because of her nausea plus her blood pressure was a little low. Finally, though she was able to go back to her room. Things looked promising when she ate some graham crackers and drank some juice. After checking her vitals three more times, they said she could get discharged. This time there was just one nurse and she was pretty busy so I said I could get her dressed. 

We got home around 2 in the afternoon. I tried to do a very watered down feeding at a slow rate to see how she did. She immediately became nauseous again. She told me she wanted to get out of her chair and sit with me on her bed. 

I think part of the issue was that she was feeling sore where they had done the four injections. I tried to talk her into laying down with me, but she refused, most likely because her tummy was upset. So we sat on the bed together for over an hour. I just sat in the most comfortable position I could and rocked her in my arms. She even fell asleep for about 10 minutes. 

She eventually seemed better and wanted to sit back in her chair. I gave her water through her tube and had her drink some juice from a straw. Later that evening, she asked for a feeding and I knew she was past the worst of it. Before going to bed, she asked if she was going to her day program tomorrow, and I told her she could. The doctor had told her she could back into her normal routine the next day. 

After sleeping for 10 hours, I was surprised when she woke up and didn't want to go to her day program. She said, "I just don't want to chance it." I knew she was afraid she was going to throw up again so I told her if she's not up to it then she could stay home. We just laid low all day and didn't do too much because the next day we had a very special dinner to attend.

Big Event #3: Grandpa and Grandma's Belated Anniversary Dinner 

My parent's 50th Wedding Anniversary was actually on June 3rd, which was just 2 days after my dad had partial knee replacement surgery.  Thankfully, he did very well with the surgery but it meant he would need to spend a majority of the summer doing physical therapy and recovering. 

My sisters and I thought maybe we could do something at the end of summer or in the fall. But it turned out that most of the family would be here the last weekend in July so we figured we should try to do something then. We kept it a secret until just a few days prior. They were both very surprised and appreciated the effort we had put forth. 


Grandma and Grandpa celebrating 50 years of marriage!

 
Many family members were able to celebrate with them.

Faith with Grandma, Grandpa, and some of her cousins.

Both of us had such a nice time!

Some of Faith's favorite girls in the world!

And her uncle, too, of course!

Faith and Grace (our amazing waitress who is also Grandma's favorite barista!

Faith's goals for the evening were to deliver Grandma and Grandpa's gift and get as many hugs from her cousins, aunts, and uncles as possible (see video below). As an added bonus, her Auntie Dawn gave her some monster cookies she had made just for her.

After all of that activity, she was still ready for church the next day. Shortly after getting home from her church, her aunt and cousins stopped over to say goodbye on their way back to South Dakota. And finally, our busy week had come to a close. I think we're both ready to get back to our regular routine and not have anymore major events for a while!

We hope everyone has a great rest of the summer!


Friday, September 9, 2016

Walking by Faith Not by Sight

Ever since I began this blog (back in 2009), I've always had the faith verse from Hebrews 11:1 on the header. But as of late, I feel the passage from 2 Corinthians 5:7 better reflects our current season of life.

This past year has been one of the more challenging ones we've had in light of caring for our daughter. As she has gotten heavier, I found lifting her has presented opportunities for straining my back. Thankfully, I’ve been able to receive healing through both prayer and the hands of a wonderful friend who is also a massage therapist. At the same time, I know I can no longer lift Faith as I once used to.

Faith hanging out at the eye doctor. She received a good report and still does not need glasses!

 Another huge change is that this past spring, Faith officially became a woman. While this is usually something for girls to celebrate, for us it provided a new set of challenges, including major PMS symptoms. Her sensitivity to loud noises heightens during this time and her already high tone kicks into overdrive, causing her to be very uncomfortable in her chair.

Because of her discomfort, we have spent a lot of time sitting on the couch together and the benefit for me is I have been getting a ton of reading done. A benefit for her is that my body serves as a dynamic seating system so that she’s not stuck in the same position for long periods of time. (Unfortunately, I have to turn down my husband’s suggestions that I submit myself to cloning.) On the upside regarding her cycle, she has been pretty regular so we can prepare for when she's going to be overly emotional and having physical symptoms.

Faith with me and two of her aunties  - look how big she's getting!

At one time Faith did occupational therapy but after a while it was advised Faith get physical therapy instead. Her OT made a recommendation and after being on a waiting list for months due to the fact they had to hire more pediatric physical therapists, we were finally able to get in. The PT has helped somewhat, and along with that, she also continues to see a chiropractor. We are glad to have made the switch to a wonderful lady chiropractor who can help us with some of Faith's hormonal issues.

Besides everything going on with Faith, we have had the most humid summer I can recall in all my years of living in North Dakota. We have had our wall air conditioner running almost nonstop all summer. Faith has a portable air conditioner (thanks to her uncle Todd) in her room that I don't know what we would do without.

Just as I have been feeling the intense heat in the physical realm, I have been feeling it in a spiritual sense as well. There have been days I have felt as though I had reached my limit and hit my breaking point. I have literally felt like I was walking through the fire. As I thought and prayed about it, I realized that it was my own fault. I mean, I had picked the word "RENEW" for my word of the year. How can God make things new without getting rid of the some of the old stuff first?

Many times I have had the thought I am going through the "Refiner's fire." While this was not always a good feeling, it did give me hope that I was going to come out stronger and that it would deepen my trust in God.

Staying nice and cool at Grandma's - Faith and most of her cousins, including the newest addition to our family.

It has certainly been a time of dying to self and I know that although it doesn't feel very good, it will end up being a good thing. It is also somewhat comforting to know that there are many other believers who are going through some very difficult situations. It has been wonderful to lift one another up in prayer.

Recent double rainbow
All of these challenges have caused us to keep our eyes on Jesus more than ever, and to depend on Him for our strength. And as we do, we continue to walk by faith, not by sight and know that whatever has already taken place in the physical realm will one day manifest in the physical.

As for right now I am really looking forward to the next season. I can't wait to feel the cool, refreshing breeze and see the beautiful transition of the leaves that always comes along with autumn.

This video of the song "King of My Heart" has been very encouraging to me during this difficult season. It's a reminder of God's goodness and that He will never let me down!





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!

Saturday, February 18, 2012

Time Flies in February

It seems that the month of February always goes by so quickly. Maybe it is because January is usually the coldest month of the year and the month just crawls; then when February finally comes, spring doesn't seem so far away. This year, with the milder weather, January wasn't so bad and February is going by even faster than usual. Another factor to a fast-flying February, at least for our family, is that both mine and Rob's birthdays are in February and it is also the month Faith gets to celebrate one of her favorite holidays - Valentines Day.

Another fun time for Faith this month was having her 2nd grade program at school. She had so much fun singing along to all the songs and jingling her bell (all the kids got to take turns playing an instrument and hers was the bell) that she wanted to have another program! It was so good to see her truly relaxed and not even having a tough time with startling when people clapped. And although she herself didn't have any lines, she was saying the lines along with the other kids when it was their turn to say their lines.
Faith jingling her bell
Faith joins in the singing with some of the other 2nd graders
This month we also had a parent-teacher conference which was turned into a mini-IEP meeting with Faith's teacher, her special education teacher, her therapists and the school principal. There are still some concerns with her having the ability to read from left to right but there are more ideas to try. Some really good news we got was that before Christmas, Faith was only getting between 40 and 60 percent on her trials with sight words and numbers 1-20. During the first three weeks of January though, she was getting between 80-100 percent on the same words and numbers. She continues to do well driving her power chair and is also getting good at using her buttons for her laptop at school.

Another area she is making progress is physical therapy. In January she received botox and that, along with much prayer, has enabled Faith to take 130 steps in her gait trainer. At home, she is asking me and Rob to help her take steps. We hold her up and support her while she "walks" from the living room into the bathroom or the living room to the kitchen. She is very good at using her right leg then her left and repeating the process until she gets to where she wants to go. Although it's tough on mommy's back, it's great for Faith!

This afternoon we will be meeting two students from the University of Mary who are studying nursing/physical therapy. Faith seems excited to meet them and if she's up to it, we are going to take her curling. She was up at 6:30 this morning so we'll see what her energy level is like.

Next week, she has hip x-rays and an appointment with her physiotherapist. I'm sure the words baclofen pump will come up again but hopefully (we are praying very hard) her x-rays show her hips are stable. We will also be celebrating Daddy's birthday next week and before we know it, February will be over and a very busy Spring will be upon us!
Another one of Faith's favorite activities is doing SKYPE with our friend, Kimberly

Saturday, January 21, 2012

What About the Boy - A Father's Pledge to His Disabled Son

What About the Boy? is written by Stephen Gallup, the father who made a pledge to his disabled son to help him find wellness no matter what it took.

Joseph's parents were convinced that something was wrong him. He spent much of his time crying and while lying on the floor he would shake his head from side to side. Doctors and specialists told them that Joseph had a brain injury but that nothing could be done for him. 

Believing that it was Joseph's birthright to be well, Joseph's parents took matters into their own hands, rising to the challenge of enabling Joseph to live a life of wholeness.

For my complete review of What About the Boy click here. Read Stephen Gallup's guest post on my blog, Who Needs Sympathy?

Tuesday, August 30, 2011

Tuesday Tidbits - Challenging Mornings and Back to Praying

Oh boy! These last two mornings have been tough ones as far as Faith getting ready for school. Everyone seems sort of perplexed by her behavior. She cries and screams and throws a fit as soon as I start getting her dressed for school. She tells me repeatedly to "Stop it!" I seriously wonder what the neighbors think during all of this. At some point she does calm down but why does she even do it in the first place? Does she seriously think that by throwing a fit we're not going to send her to school?

Both her morning and afternoon aides say that when she is in the classroom she is a little tense and her arms are bent up stiff like she can't totally relax. I'm hoping this will get better as she gets more used to her new classroom. Despite her bits of anxiety, her feedings are going well at school for which I am very grateful. Last year we kept having episodes of gagging and throwing up and we ended up seeing a nutritionist to see if we needed to make any adjustments to her food. We also switched her over from the liquid Senna to Miralax which is working well for her.

Today she got to be the helper of the day or as her teacher calls it, "Top Banana." I mistakenly thought this meant she had to bring snacks for everyone but turns out all the kids bring their own snack, which is different than in kindergarten and first grade. The kids didn't mind having an extra snack! Also she got to bring show and tell. She brought her favorite book, "We're Going on a Bear Hunt" and with the help of her teacher even said the words to the book aloud to her classmates!

Anyway, after a couple of such rough mornings getting Faith ready for school, I was so thankful to get back to Moms in Touch and start praying for the kids in school again. I found out that these prayers are needed at Centennial as some of the rooms are nearly over-flowing with new students and there are a shortage of aides. There are also a couple of new students who have special needs. I have been praying for Faith about school but it feels good knowing there is another mom who is praying for her too about the same issues.

During these past few days that Faith has been in school I am discovering just how wonderful it is to have a vehicle at home just waiting for me to drive to Wal-mart to pick up needed supplies or food. Since we got the corroded wire fixed, the van has been running great.

Today was Faith's last physical therapy session at Medcenter for the summer. She has done great in her gait trainer this summer and we'll be getting one at home so we can continue working on that with her here. It would be great to have Faith walk down the hall with me to grab a pop! She'll be getting a new, much more modernized stander as well as she is outgrowing her old one. For some reason, she just won't stop growing - hard to believe she will be eight years old in two months!

Thursday, August 11, 2011

Some Magical Moments at the Park

All week long, Medcenter One has been holding their pediatric therapy sessions a handicapped-accessible park called Magical Moments. Of course when this was being planned, the weather was going to be a key factor. It turned out to be a beautiful week - perfect for playing in the park

Yesterday, Faith got in her gait trainer like any normal physical therapy session but this time instead of walking down a hallway, she got to walk up some ramps that eventually led to some slides. It was harder than normal because these ramps were at a slight incline and she has never walked uphill before. She worked so hard and as a reward she got to go down the green slide with her physical therapist. She was all smiles!

Faith giving it all she's got



Keep going Faith!
Faith made it to the slide!
Going down the slide!
When Rob and I lived on 7th street, we used to take Faith to this park quite a bit because of the special wheelchair swing it had. The swing is now new and improved and Faith loved it just as much if not more than she used to.

Having so much fun on the swing!
After she was finally done swinging we went home for a feeding and for me to get my bean salad out of the crock pot for our picnic back at the park. The potluck picnic was sponsored by the CP Support Group and it was a great chance to visit with other families and chat with the pediatric therapists - about something else besides therapy!

Time to socialize and eat lots of yummy food!
It was a great day at the park and I know Faith was totally tuckered out because she slept in past 9:00 this morning!

Wednesday, June 22, 2011

An Afternoon at Hydro and Physical Therapy

A typical Wednesday afternoon for Faith...

Faith getting her stretches in the pool
Faith uses a wet noodle to help kick her legs behind her while working to keep her head up
After all that work, it's time to relax a little
Faith has come a long way since her first day in the pool when she screamed during the whole half-hour session. Rob had to get in there with her the next time then after that she was fine and started to have fun in the pool.

After we get out of the pool, I hurry and get her dressed so she's ready for her physical therapy session. One of the reasons she has hydro first is so that her muscles are more relaxed enabling her to use them more effectively in physical therapy.

Look how tall Faith is standing in her gait trainer! And notice her new tennis shoes!

Faith in her gait trainer taking some steps

Even though it is hard work, Faith really does enjoy her physical therapy sessions - as you can tell in this picture! I know one reason she enjoys it is because she has such great people who work with her.
Now after such a busy, active day, Faith will hopefully get a great night's sleep!

Wednesday, June 15, 2011

Wild Wednesday

Ever since Faith stopped going to therapy at Medcenter last fall, I felt like we haven't been running around so much. It's actually been kind of nice. But now today I was reminded of how our days of running used to be and how we managed with only one vehicle.

This morning we had to get Rob to work then Faith had an appointment at Medcenter. We had about an hour before her appointment so Faith and I hung out at the library for a little bit. She picked out a Curious George book and I found a Roxanne Henke book I haven't read yet. Then we checked out The Red Rooster cafe which is located right in the library. I enjoyed a  delicious iced mocha and Faith had what else? Ice cream!

Then it was time for Faith's appointment. She had a mild meltdown in the waiting room and continued to cry when the nurse came in to get her temp.  She was nervous because she knew someone was going to be looking at her Mic-key button, which was the reason for the appointment. By the time the physician's assistant came in, however she had calmed down. The PA checked Faith's button and sure enough it was looser than normal because there wasn't very much water left in the little balloon that holds the button in her tummy.

The PA said there may have been a microscopic hole in the balloon part which allowed the water to leak out. I am so thankful we went in to have it checked. We would have been able to deal with it if it popped out at home, but it is scarier if it happens at school or with a respite care provider.

Afterwards, we made a trip home so Faith could have a feeding and a chance to relax a little before heading off to hydrotherapy. She had a blast swimming in the pool today. Unfortunately, I didn't get any pictures because in the midst of making sure I had packed her swimsuit, swimming diaper, extra briefs, plastic bags, Faith's hand splints, orthotics and her tennis shoes, I forgot I had left the SD card in my computer. For some reason, I can't store any photos on my camera itself. Hopefully next time, I'll get pictures - she looks so happy and relaxed when she's swimming in the pool

After hydro, she had physical therapy where she got in the gait trainer and did great! She took about 30 steps. Afterwards, she was pretty tuckered out. As soon as we got home, we had to start another feeding.

And now after respite care gets her, Rob will be home then I'll be off to hear Abby Johnson and some other pro-life speakers at a public forum at the Doublewood. It should be really interesting. While I'm doing that, Rob is going to be cheering hard for the Canucks to win the Stanley Cup tonight. They play in Vancouver and haven't lost a game in this series yet at home.

All in all it has been kind of a wild day and I'm looking forward to getting back to our somewhat normal routine tomorrow!

Monday, June 6, 2011

Summer School

Daddy got to take Faith to her first day of summer school
Faith was full of questions this morning getting ready for summer school, or Camp Edventure. Many of them she already knew the answer to since we had been talking about it for a while. I think she wanted to be reassured of who her teachers were going to be, who was going to be her aide, when I was coming to get her etc. One of the questions she asked was, "How many days of summer school do I have left?"

She hadn't even begun and she already wanted to know when it would end! Seriously though, towards the end of the regular school year, she fought in the mornings about going to school. I think she was just getting tired and wanted a much-needed break.

She expends so much energy at school that she is exhausted at the end of the day. A nurse told me recently that kids with CP put out three times more energy than the average child because it takes so much work for some of them just to keep their heads up and try to have some control of their muscles.

I know she has enjoyed her week off from school but I think once she gets into the routine of going to school for four hours a day she'll really enjoy that time.

This morning, since Faith starts school at 8 a.m., Rob and I both got to walk her to school because Rob doesn't need to be to work until 8:30. Originally, we had Faith scheduled to take the bus to school but we figured since there was no snow to worry about anymore, we could just walk her down there and back home. Also, the bus wasn't able to get her until 8:05 and I didn't want her there later than the other kids. I think she's a little disappointed to not take the bus though.

When we got to school, Faith was especially happy when her friend, Chloe, came over to her and asked if she could push Faith inside. And when she saw her aide, she yelled out, "Hi Julie!" There was a little bit of confusion with some kids there from other schools not sure where to go. Due to the flood situation, many kids had to attend summer school at a different one than was originally intended for them.

During summer school she'll still be getting speech, occupational therapy and physical therapy once a week at school along with specialized academics twice a week. She'll also be getting physical therapy and hydrotherapy at Medcenter once a week as well.

I'm sure these 27 days of summer school that are left will go by extremely fast!

Friday, April 1, 2011

Lights, Camera, ACTION!

Yesterday was a big day for Faith - there were a little bit of lights, a few cameras and lots of ACTION!

At the beginning of the day about four people met with Faith so that she could FINALLY get the right part installed on her chair that would enable her to use the same buttons she uses to drive her chair to work with her computer. Technology is wonderful but it can require lots of patience!

Faith working on her computer with help from Ms. Hall
That afternoon, the KFYR TV crew came in to record Faith doing some of her daily activities at school. They recorded her doing some work on her computer with her buttons and also driving her power chair.

I haven't seen her drive her chair for a long time and I was very impressed by how well she's driving! She is even able to drive herself into the elevator and turn around because she doesn't like her back to the door. The cameraman got in there with her and I think he was a little nervous she was going to run him over!

The reporter asked Faith a few questions about GABR and then interviewed Faith's physical therapist at school and also her special education teacher. All three of them did a great job!

Faith being interviewed by KFYR reporter, Julie McDonald
And after all that, you would think Faith could have taken a break but she had to go to the gym to practice with all of the first-graders for their upcoming program. I was able to look in on her and see her singing along to the songs!

Seeing her doing all of these activities today reminds me of how far she has come since her first days at preschool. I am so proud of her and I know that she will continue to work hard and with the help of others she will be able to overcome her obstacles and meet all of her goals. What more could a parent ask for?

By the way, this week her TV interview on the KXMB noon show aired. To watch the video go here.