Showing posts with label baclofen pump. Show all posts
Showing posts with label baclofen pump. Show all posts

Saturday, January 19, 2013

Faith's Mom's Blog Top 12 of 2012

I thought it would be interesting to see what blog posts in 2012 had the most views. I was a little surprised by the post that was visited the most. I was also very proud that the guest post written by my father-in-law made the top 12, in fact it almost made number one!

I had a big surge of views during the month of December. In fact, four of the posts I put up that month ended up getting more page views than the posts I had written at the beginning and middle of 2012. I wrote 42 posts during 2012 and here are Faith's Mom's Blog top 12 of 2012:

Number 12 - Good News About Faith's Hips publish date: 2-25-12
It's Saturday morning and after a busy, somewhat stressful work week, I can finally take a moment to enjoy a nice cup of coffee while doing some writing. Sitting here, I am reflecting on the wonderful news we received on Wednesday. Faith's left hip has not pulled out any further from its socket! Read More

Number 11 - Conscious Sedation - A New Experience for Our Brave Girl publish date: 1-6-12
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. Read More

Number 10 - A 40th Wedding Anniversary publish date 6-17-12
On June 3rd of this year, my parents celebrated their 40th wedding anniversary. It wasn't until this past weekend, however, that they were able to celebrate the momentous occasion with their five kids, eight grandchildren and a few of their siblings as well. Read More

Number 9 - My Ten Favorite Christmas Songs publish date 12-23-12 
Christmas music has been playing now for about a month or so but honestly, I think it could play all year long as far as I'm concerned. I love the beautiful lyrics about the baby born in a manger; some of them written hundreds of years ago. While the traditional ones about Jesus are my favorite, there are a few Christmas songs that I really have fun listening to - and singing along with! Read More

Number 8 - Faith's Fun Week at School publish date 11-30-12
At least once a year, Faith's school has a fun week where there is a theme each day on how to dress. When Rob was getting Faith ready in the mornings, he really didn't put too much effort into making sure Faith was dressed according to the theme of the day. I used to love having these fun weeks at school and I loved getting Faith ready each day this week. Read More

Number 7 - Merry Christmas from Faith's Mom's Blog publish date 12-25-12
This is a slideshow I put together using Smilebox. It includes several photos I took throughout the month of December, of our family and around Bismarck. View the Slideshow

Number 6 - Christmas Festivities Galore publish date 12-10-12
This season is known as the most wonderful time of the year and probably the busiest time of the year as well. Along with starting Christmas shopping, putting up our tree and thinking about getting our Christmas cards ready, we have taken part in some great Christmas events. Read More

Number 5 - Give the Gift of a Wheelchair publish date 12-16-12
As with most kids in this country who have a physical impairment, our daughter has access to one of the most basic necessities of a handicapped child - a wheelchair. But for those disabled children in third-world or communist countries, many children with cerebral palsy or similar disabilities cannot so easily attain a a much-needed chair that offers the simple gift of mobility. Read More

Number 4 - The Baclofen Pump Decision publish date 7-13-12
Even though Faith's x-rays have shown that her hips are stable and have not come any further out of her sockets (especially her left hip), we decided to move forward with getting the baclofen pump. We felt this was the right ecision and that Faith would benefit if the pump helped to decrease her tone. Read More

Number 3 - Having A Blast Playing Wheelchair Soccer publish date 3-25-12
I guess after Saturday's wheelchair soccer game in which Faith took part, I could easily see myself as a wheelchair soccer mom. She had such a blast and with the help of a soccer player from the University of Mary, she made some great plays and even scored some goals! Read More

Number 2 - Grandparents From a Distance publish date 8-2-12
Cari, our daughter-in-law, has asked me to write up an article for her blog. Not being a blog-writer myself, this has been something of a new experience for me. I do trust that your reading of this will be worth your while. Read More

Number 1 - Goodbye to Our Special Tomato publish date 6-1-12
Today we said goodbye to our Special Tomato adaptive car seat. And special it was. It helped Faith stay safe and secure in our Hyundai driving her back and forth to therapy appointments, shopping excursions and many other activities. It also helped us through our time of not being able to afford an accessible van. Read More

Friday, July 13, 2012

The Baclofen Pump Decision

Even though Faith's x-rays have shown that her hips are stable and have not come any further out of her sockets (especially her left hip), we decided to move forward with getting the baclofen pump. We felt this was the right decision and that Faith would benefit if the pump helped to decrease her tone.

After making the decision, Rob sat down with Faith and explained to her that she was going to be getting something called a baclofen pump and that she was going to have to be in the hospital. She of course, was not too happy about this news and every now and then she would let us know it by yelling, "I'm not going to get a baclofen pump and I'm not going to the hospital."

Rob called the clinic to get the ball rolling and ended up leaving a message. We were surprised when no one returned our phone call right away. Then when we finally did hear from them, they gave us the surprising news. They had made a managerial decision at the clinic to stop putting baclofen pumps in children because there is not enough staff on hand to look after them.

It is my understanding that once a person gets a baclofen pump, the person has to be monitored very closely at first in order to get the proper dosage. The dosage can be tricky as too much can cause decreased tone in areas that already have low tone. For Faith that is in her neck and trunk. There needs to be just enough administered so that the high tone will decrease and it will help her with her functionality. Too much baclofen can cause harm and even death.

When we first began to explore the idea of Faith getting her baclofen pump, I talked to a mom whose child had one. While she said it had helped her son immensely with decreasing his tone, she also had concerns because there weren't enough people to look after the baclofen pump especially in cases of emergency. This caused Rob and I to continue to pray about it and now in the end, it is for that very reason we can't get the pump for Faith.

We are relieved that we did not go forward with the decision of Faith getting her baclofen pump - especially if she started having problems with it and there was no one who could get her the medical care she would need. There is still concern about her left hip so we will continue praying that it remains stable. As for Faith, I guess she was right, she's not getting a baclofen pump and she's not going to the hospital!

Saturday, February 25, 2012

Great News About Faith's Hips

It's Saturday morning and after a busy, somewhat stressful work week, I can finally take a moment to enjoy a nice cup of coffee while doing some writing. Sitting here, I am reflecting on the wonderful news we received on Wednesday. Faith's left hip has not pulled out any further from its socket!

On Tuesday, Rob took Faith to get her x-rays and then on Wednesday he took her to see the physiotherapist. Upon reviewing Faith's x-rays of her hips, the doctor could not quite believe what he was seeing. The hip looked like it was in the same position as it was five months ago. He was in such disbelief that he sent Rob and Faith back downstairs for another round of x-rays. Faith had to stay on the table in case the doctor wanted more shots taken. She laid there as patiently as she could for about 30 minutes before the doctor finally called them back upstairs.

The doctor may have been befuddled but we know that God is working in Faith's body and we give Him all the praise!

Even though her hips have remained stable, the doctor pointed out that getting the baclofen pump could still help Faith. Now that she is eating more and gaining weight, we feel better about going ahead with the decision. We will keep you posted!

Saturday, November 26, 2011

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!

Saturday, November 5, 2011

No Decision Yet Regarding the Baclofen Pump

Faith recently went to see a surgeon regarding the placement of a baclofen pump. At our last appointment with her specialist who oversees all of her therapy we were shown x-rays that proved her left hip was about 40% out of its socket. For this reason, we set up a consult with a surgeon and were looking at getting the baclofen pump sooner rather than later.

I was surprised to find out that the surgeon has some reservations about inserting the baclofen pump. The main reason for his reluctance is that Faith is still pretty small. They normally won't put the hockey-puck-sized pump in a child that is less than 45 pounds, which is pretty much what Faith weighs. There is extra concern with Faith because there is even less room in and around her abdomen due to her having a mic-key button. When Rob mentioned maybe waiting a year until Faith grew more, the surgeon said that was probably wise.

But still, there is her hip to think about. I really don't think her other doctor is going to be very happy that she's not getting a baclofen pump like right now. We could still go ahead with the surgery but it might cause complications because it would be sort of squished in there and too close to her pelvis bone and be very uncomfortable for her.  The pump then might cause more harm then good.

I feel like we are stuck between two doctor's opinions. One is very concerned about her hip, the other more concerned about her size. We are going to have Faith see her pediatrician soon. I was a little surprised she only weighed 45 pounds because at one time she weighed closer to 50. Last year we had decreased her feedings because her pediatrician thought she was getting too much Pediasure which was causing some stomach problems. So now we want to make sure she is getting enough Pediasure during her feedings and want to know what her ideal weight should be. We will also ask him what his opinion is regarding getting the baclofen pump.

In the end, though, it is still our decision. We truly pray for God's wisdom and continue to also pray for supernatural healing for Faith's hip.

Saturday, October 1, 2011

The Appointment

Faith did great yesterday getting her x-rays taken. She stayed nice and still so that the technicians could get three good pictures of her hips. Shortly afterwards we headed upstairs to talk to the doctor and to see the pictures we had just taken. When the doctor pulled them up on the computer, even I could tell it wasn't good news.

Faith's left hip has proceeded to come out of its socket. We had been hoping and praying for no changes, as the last two x-rays have shown. This time, though we could clearly see this was no longer the case. Her hip is about 40% out of its socket. At this point, we know we have to take action. If not, Faith's hip will, over time, become completely displaced.

We set up a consult with a surgeon for November 1. From there we will set up another date for Faith's surgery to get her baclofen pump. This will be the first procedure for Faith where she will have an extended hospital stay - most likely 3-5 days. Thankfully, this can all be done here in Bismarck. We are also thankful that we are not alone - we know we can turn to other parents of kids with baclofen pumps for questions and support.

Though we are facing the reality of Faith getting a baclofen pump, we continue to pray that God will heal her hip. We know we must continue to step forward in faith while stepping forward medically as well. We welcome your prayers as we head into yet another area of uncharted territory with Faith.

Tuesday, February 22, 2011

Two 'B' Words that are Causing Me Emotional Strain

There are two 'B' words that are constantly on my mind and are causing me some serious emotional strain. Briefs and Baclofen. You may wonder what's the big deal about briefs. Well, it is a big deal when your child is 7 years old and has to wear these large plastic diaper like products that resemble a small garbage bag and seem very uncomfortable. Since Faith has been growing (I know that's a good thing) she has finally outgrown her size six diapers which is the largest size they make.

She really doesn't seem to mind them but it pains me each time I put her in one. Briefs seem so much more final than diapers - like she will be wearing them forever and I don't know if I'll ever be able to accept that.

We haven't ever really worked on potty training. We don't even know if it is a reality because she may not be able to control her bladder. But now because of these briefs and my dislike for them, that is something I really want to start working on with her this summer. There is a catch though - it's hard to hold her up there on the toilet so we would need to get an adaptive positioning seat that goes over the toilet so that she would have support while sitting up going to the bathroom.

I think if she was able to do it, she would feel like such a big girl and would be so proud of herself. And if not, I will have to accept that fact just get used to the briefs. I have hope though because I know of other kids with cp who haven't been potty trained until they were 8 years and older.

Now, about baclofen. This is something we have known for some time that is coming. Because of Faith's high tone, it has been recommended that she get a baclofen pump. This is no easy decision. It is a full-blown surgery and she would be in the hospital for more than a couple of days. Her doctors are hoping that with this pump inserted into her body, it would help decrease her tone and help her be more functional. It might make it easier for her to walk in her gait trainer and possibly make it easier for her to feed herself.

The pump itself would be inserted just under her skin near her abdomen. It would kind of be like my pacemaker except larger. The pump would then administer baclofen to her spine to help relax her muscles. It may ease her discomfort and allow her to sleep better at night.

It all sounds good but scary as well. There's the thought of getting the medicine refilled and constantly monitoring her baclofen levels. There is also not a lot of trained professionals in this area who deal with these pumps. Of course the doctors and therapists are all totally on board but it is hard when it is your own daughter. What if something goes wrong? What if she gets an infection from it? What if, what if...

We do have the opportunity to get a test dose administered so we can see how the baclofen affects her. If it seems like it would be a good thing for her, we would then set things up for her surgery. With the test dose, they would have to inject it directly into her spine and it would be good for 24 hours.

What a huge decision! We have known some kids with the pump who got theirs later in life and think it is one of the best things that have ever happened to them and wish they would have done it sooner. But we also know of parents who have had concerns after their child got the pump inserted and also know parents who hesitate for their kids to get the baclofen pump inserted.

So there you have it - two 'B' words that are weighing heavily on my mind these days. I'm thankful to have other parents to talk to and know of other children who have gone some of these same issues. I'm also thankful that I know the all-knowing Lord will help us make the right decisions.

Tuesday, November 16, 2010

Tuesday Tidbits

I must say, after the long weekend, I am feeling a bit guilty. We didn't have too much going on so we mainly stayed indoors and I let Faith watch way too many videos. When Sunday finally rolled around, she was bored and a bit cranky. Before having kids, I always told myself I would not be one of those moms who lets the TV babysit their kids. Things sure turn out differently when you actually have kids!

When Faith comes home from school, that is all she feels like doing. She is so tired from her long day, which not only includes classroom time but also working hard with her special education teacher, driving her power chair and any other therapies she might have for the day. By the time she gets home, she is spent. I don' feel as guilty letting her watch so many videos after school but over the Thanksgiving long weekend, I am going to try hard to limit her video-watching time and find other things for us to do.

Last Friday I took her to the doctor because her nose had been sort of stuffy for the last two weeks. Personally, I think its because all four of her molars coming in at the same time. But I've never known a pediatrician to say that teeth issues are the cause of anything but a little bit of discomfort. She ended up getting the flu mist and now she has a full blown cold. So now I'm wondering if she's reacting to the flue mist or if she caught a bug at the doctor's office or what. He did give us a prescription when we were there for some antibiotics in case her cold symptoms worsened into a fever, coughing, etc. Hopefully though, she'll be just fine and we won't need to fill it. Thankfully, she slept well last night despite her cold.

Before her appointment, we had time to go to pediatric therapy to visit one of the receptionists and we also saw her physical therapist, Jackie. She was so excited to hear how well Faith is driving her power chair at school! It was great to see her but she agreed we had made the right decision by taking Faith out of therapy at Medcenter to focus on things at school.

Tomorrow we're going to be getting Faith's hips x-rayed. We are really praying there hasn't been a lot of change in her left hip, which is starting to come out of its socket due to her high muscle tone pulling it out of place. If her hip looks worse than what her last x-ray showed, we will probably have to consider getting the baclofen pump sooner rather than later. I'm really nervous about getting the pump which is a device that allows medicine to be injected into her spine to help relax her muscles.


Until The Whole World HearsOther than all of that, I just listened to the newest Casting Crowns CD, Until the Whole World Hears. If you like worship music, I highly recommend getting this one!

Have a blessed week and please continue to keep Faith in your prayers.