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?

Conscious Sedation - A New Experience for Our Brave Girl

I am so very proud of both Rob and Faith. I only wish I could have been there with them. Today was a new experience as Faith's medical providers used conscious sedation while administering her botox shots.

I was pretty bummed that I couldn't be there. January marks our busiest month at work so taking time off is limited. I already have to take time off on Monday for an appointment. So there I was this morning at work wanting to be with Faith and praying that all would go well.

Rob and Faith had to be at the hospital at 8:30. Faith's pediatrician was there, along with a few other of Faith's favorite medical providers. She was especially happy to see PBS playing on the television. Seeing something familiar helped to keep her calm.

Rob and I have struggled in the past wondering if conscious sedation was the right thing to do for Faith. It just didn't seem like giving her sedation drugs every time she got botox was very good for her. In the past during her botox injections, I would have to hold her down while they gave her the five shots in the back of her legs. It seemed to take forever and she screamed through the whole ordeal but when it was over she was fine.

For this round, Faith's doctors talked us into using conscious sedation. They said it was better for her, not just because it was painless but because Faith wouldn't have as vivid of a memory of the event.They also told us, she would not be completely put under like she had been with her feeding tube surgery and her phenol block.She had a really tough time after those procedures because the anesthetics really upset her tummy and we ended up having to stay at the hospital longer than anticipated.

Needless to say, today's event went much better than we could have possibly imagined. Faith didn't cry once - not even when they tried to put the iv in one hand then when that didn't work put it in the other. After giving her the sedation medication, Faith was very relaxed but not completely asleep. Rob was right there by her side praying for her the whole time. And before they knew it, they were back home.

I was a little stunned when I checked my e-mail on my lunch break and Rob said everything went really well and that Faith didn't even cry. I had to call on my 2:00 break just to make sure everything was still okay. Faith was happy and excited for me to come home so she could tell me about her adventure at the hospital. When I did get home, she said, "Mommy I was a really big girl at the hospital today." She has lots of stickers to prove it!

Here are some miscellaneous pics of our brave girl:

New jammies!

Look how tall she is!

Faith getting ready for bed

Saying Goodbye...Again

Last month, we had a sad surprise - that Brittnee, a respite care worker who has been with us for a year and a half, was leaving. Once again, it was time to say goodbye to someone who had become like a part of the family. It's hard when these respite care girls leave, although it is completely understandable. More often than not, they are college-aged and in serious relationships which lead to engagement then marriage.

There have been three wonderful girls we have gotten the privilege of knowing through respite care services. And I am continually impressed with their maturity, professionalism and most of all, their great care-taking skills with Faith.

While it is hard for us to see them go, it is great that there is e-mail, Facebook and even Skype so we can keep in touch. With all of today's technology it makes the goodbye seem not so final. So to Kimberly, Lindsey and Brittnee - three amazing young ladies who we are blessed to know through respite care - we wish you the best in all you do, wherever your journeys take you.

Faith and Brittnee

2011 Christmas Moments

Though it wasn't a white Christmas - not too many people minded considering the astronomical amounts of snow we have received the last three winters - it was definitely a Merry one! Following are some photos of some of our special moments this Christmas.

Our Happy Birthday Jesus cupcakes that Rob and Faith delivered to
Faith's teachers and therapists at school. 

Our little family

Our friend Joann delivers a wonderful Christmas present to Faith -
a porcelain tea set

Faith enjoying a special visit from Auntie Barbara and Uncle Todd

Faith's new hat!

Faith finally reaches December 24th on her
Lego Advent Calendar!

"Cookies for the Bousfield Family - Rob Cari Faith" cookie jar that my parents got us for
Christmas. It's perfect because Faith has been eating a lot of cookies lately!

Faith's personalized cupcake painting to match her cupcake room!

Riding along with Todd and Barbara on the way to Watford City

The Lawlar family on Christmas Day

Happy to have Barbara and Amber join us as sisters!

Funny boys - Donnie trying to take a picture of the inside of Preston's mouth!

Me and Dad - 2 NDSU Alumni who will cheering for the Bison
to win a national championship in January!

A beautiful Western North Dakota sunset -
the perfect ending to a wonderful Christmas Day!

We truly hope everyone had a safe, wonderful, joyous, peaceful Christmas this year and will have a very blessed New Year!

I Heart My Mayo Cardiologists

Recently on Facebook, I saw that someone had written to one of her  friends, "I heart you." I thought it was cute and quite appropriate to say to my Mayo doctors, especially since they are cardiologists!

The first time I ever met a doctor from the Mayo clinic was shortly after my cardiologist in Fargo told me I might need to start taking a blood thinner called coumadin because my right atrium was grossly enlarged and then neglected to call me back to let me know for sure.  I ended up having to call them and he told me to just stick with an aspirin a day. Well, there is a big difference between using a baby aspirin a day and coumadin! Of all people, my cardiologist's nurse told me about the Mayo doctors who come to Bismarck, North Dakota.

After some pushing from my mom (who was really worried about me because I was not well at all but was still trying to work full time) I finally called and set up an appointment. I met Dr. Hagler and Dr. Ackerman in April of 1999 and they gave me the shocking news that it would be in my best interest to undergo another open surgery. (My first three surgeries were all done at the University of Minnesota).

My first trip to the Mayo Clinic was in May of 1999 when I had my fourth open heart surgery at St. Mary's Hospital. Four years later, Faith stayed at St. Mary's while in the NICU for two weeks.

Fast forward to 2003 when I ended up having Faith at the Mayo Clinic. There was a whole team of cardiac specialists on hand to make sure my heart remained stable during my emergency c-section. Although my cardiologist gave me a little grief for making him come in on a Saturday, I was so thankful he was there!

My great experiences with my Mayo doctors are the main reason I have gone back to Rochester when my pacemaker needed a battery change. Just recently though, I decided to have it done here in Bismarck. Although everything went well with the procedure, a couple of days later I noticed some erratic palpitations and I was very tired.  The surgeon who had done the procedure recommended a 48-hour holter monitor.

I took the holter monitor off on a Friday and the following Thursday I went in for a follow-up appointment and was dismayed to find that no one had even looked at the results. The physician's assistant I saw pulled up my report while I was in the office with her and said, "No wonder you've been feeling like crap, look at all these SVT's!"

She went on to say if I kept having supra ventricular tachycardia (SVT) I might have to go on a beta blocker to help control the arrhythmias. She said she would forward the results to my cardiologist at Mayo.

Two out of three of my battery changes were done at the Mayo Clinic.

On Friday I  e-mailed Dr. Cetta and asked if he had seen the test results and on Saturday morning at 6:30 a.m, he e-mailed to let me know he had forwarded the results on to the pacemaker specialist at Mayo (Dr. Cannon). Dr. Cannon e-mailed me as soon as he saw the results and assured me that I was not having SVT and that I would not have to go on a beta blocker. While this made me feel better about what was going on with my heart, it caused me to feel extreme frustration towards the cardiology department at Medcenter.

Today I e-mailed the pacemaker specialist one more time and he e-mailed me back telling me he could understand why I was still feeling the palpitations. He tried to explain that as my underlying heart rate gets faster, it's competing with my pacemaker which makes it look to the average cardiologist that I'm having SVT. He said if it continues to be a problem they can try to reset my pacemaker again.

Some of the palpitations are because when they changed my battery, it irritated some of my nerves which will resolve as the skin heals. It's possible that I'm having these reactions to this third battery because my lead is getting old. This battery is only supposed to last about three years and I'm guessing the next time I go through this, the leads will be changed along with the battery. It is a fact I will be going Rochester for that one!

I truly do heart my Mayo cardiologists and am so glad they are just an e-mail away!

Post Pacemaker Update

Since my last post regarding my pacemaker battery change, I unfortunately have not been doing as well as I would have hoped. My hopes for higher energy levels have been dashed as I have been even more tired than usual.

On Monday night, I began feeling weird palpitations and sometimes my heart would beat so hard that I could see my chest pounding. I thought maybe my body just needed to adjust to the new battery.

The next day at work though, I noticed the same symptoms. On my afternoon break I tried to call the pacemaker clinic but of course I couldn't get through. When I got home in the evening, I tried to call again. This time, the surgeon who performed the battery change was on call so I was able to speak with him. At first he wanted me to come to the ER and get an electrocardiogram done but I told him it wasn't doing it all the time so then he told me to come in and get hooked up to a holter monitor.

On Wednesday during my lunch break I got hooked up. I had to wear it for 48-hours, which I thought was a long time until I realized there were actually times when people had to wear them for up to three weeks. On Friday during my lunch break I was able to take it off. Rob and Faith came to work to see me and to pick it up so they could take it to the clinic. It was fun having them there and my new co-workers really enjoyed meeting Faith since I talk about her so much.

Faith wasn't in school that day because we are going through a slight transition with her as well. She started taking a new medication to help decrease her drooling. It is very distracting at school when her aides are constantly having to wipe her face. We think it might be attributed to that last molar coming in but there are times she also forgets to swallow which is common with kids who have CP.

Anyway, one of the side effects of this medicine is constipation. She had been up a lot on Thursday evening with an upset tummy and trying to have a bm. Needless to say she overslept on Friday and was very tired, so Rob kept her home. We have increased her Miralax intake and so far this weekend that seems to be helping.

I still haven't heard anything about my monitor results. Hopefully on Monday I will know something. I am also scheduled to come in on the 8th to get my scar checked and make sure the pacemaker is working ok - hopefully they will just have to reset my pacemaker settings and that will fix it.

In the meantime, I have been receiving a lot of encouragement from family and friends and I know their prayers are making a difference. Our respite care ladies have been very helpful coming over to make sure Faith gets her bath and her hair washed and also that I can get some extra rest. Today while I took a long nap, Faith had fun with Michelle making a gingerbread house. We are truly blessed to have so many wonderful people in our lives.

No Black Friday Specials at Medcenter

Though Medcenter wasn't having any Black Friday specials, Faith and I both found out that it was the best day to have an appointment. Everyone in Bismarck was either gone, shopping or sleeping, so we got into our appointments right away and were in and out very quickly.

For my appointment, I arrived at 9:30 to get my pacemaker battery replaced. A pacemaker check on November 11 via telephone showed that my battery was in ERI - the stage at which the battery begins to conserve energy because it's getting low. Apparently, it had been at that stage as of October 23rd - which is the day before I started my new job and also the day before I once again had health insurance. When a pacemaker is at ERI, it usually has about three months of battery life but because my heart sucks the juice out of my battery at a faster rate than normal, they advised me to get it changed as soon as I could. It worked out that I could get in the day after Thanksgiving - a holiday for us at work.

At first I was a little apprehensive about getting the procedure done in Bismarck as opposed to Mayo. In the end though, I am so glad I was able to do it here. The whole thing only took about 2 hours. The worst side effect I had afterwards was the shakiness that I felt. I was able to eat something though and since I was awake and alert, they let me go home. Of course I couldn't drive - Rob had been there the whole time so he took me home. I was pretty impressed with Rob - he stayed in the room while they were drawing blood and hooking up my iv. The only time he left was when I made a request for a caramel mocha while waiting to get discharged.

I am so thankful that I have the whole weekend to recover - I have been sleeping a lot. I am also a little sore and it's really black and blue. Faith constantly asks to see my owie. I was a little disappointed they didn't just go over my old scar - instead they created another one.

I really wanted to accompany Faith to her appointment later that afternoon with Dr. Ocejo. I had a lot of questions for him but due to my exhaustion I stayed home and slept  while Rob took her instead. At 46 pounds, Dr. Ocejo is happy with her weight and we are to continue doing what we are doing with her diet. She has actually been asking to eat more solids so that has been a good thing.

As far as the baclofen pump is concerned, he is fine with our decision to wait until she gains a little more weight. In the meantime, we will be getting another round of botox to help relieve the high tone in her legs. This time though, we will be getting her partially sedated (like I was for my procedure) so it's not so traumatic for her. 

After the appointment, Faith started to cry because she was having so much fun with Dr. Ocejo and was sad to see him go. She had been asking him all sorts of silly questions like "Does everyone on Sesame Street brush their teeth?" and "Do you know what a quest is?" They get quite a kick out of each other!

Over the Thanksgiving weekend, our appointments were both something to be thankful for and since we didn't get any Black Friday specials, it is good that we have great health insurance!