Faith's Monumental Visit to South Dakota

-
Image
When I received my niece, Sydnee's graduation announcement in the mail, I thought it might be the perfect opportunity to visit my brother and his family for the first time at their home in Spearfish. I also thought it would be the perfect opportunity to see Mount Rushmore, which I had never seen before!  My nephew in Nebraska was graduating that same weekend, and my sister Dawn and I tried to put together a plan where we could go to both of their graduation receptions. I knew though, that Faith would feel left out and would want to go, too. I also knew it was going to be difficult to find someone to look after Faith over Memorial Day weekend.  Our finalized plan involved Dawn traveling to South Dakota with me and Faith and then her flying to Nebraska by herself. Faith and I would then drive back to Bismarck by ourselves.  3 adventurous travelers  I must admit, as the trip got closer, I started to get a little anxious about how Faith was going to do with so much drivi...
Post a Comment

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 showed 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 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 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 than 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.

Comments

Post a Comment

Most Popular Posts

Guest Post: Who Needs Sympathy?

-
Image
Guest Post by Stephen Gallup Last week, a columnist for the local newspaper interviewed me in connection with a memoir I wrote that’s being published this year. It was a comfortable, low-key discussion in which he asked about the basic facts regarding my disabled son Joseph and what I’ve learned that might be of value to other families. It was the sort of dialog that required no special preparation in advance. I just sat down with him and talked about the subject closest to my heart. But looking back on it now, one thing bothers me. In concluding the interview, the reporter expressed heartfelt sympathy for everything I’ve endured. He was being more than polite. I mean, he laid the compassion on with a spatula. Startled, and already thinking ahead to what I had to do next that day, I just thanked him and said goodbye. But now that final note troubles me. I don’t want sympathy! First of all, from the point of view of a new author hoping to promote his book, sympathy...
Read more

Cerebral Palsy Awareness Month: Reflecting On Our Journey So Far

-
Image
Did you know there are 1 million people in the United States who have cerebral palsy? I guess that means Faith truly is one in a million!  Faith was diagnosed with cerebral palsy when she was six months old. Prior to that, she had been given the diagnosis of Periventricular Leukomalacia  (PVL). During her premature birth, there was a lack of oxygen to her brain, which resulted in damage to the white matter, or inner part of her brain.  I will never forget receiving that news. Faith's Dad and I were told that nobody knew what the long-term effects of PVL would look like for her. All I could do was stare at my tiny daughter lying in her isolette, hooked up to all kinds of tubes and lines, and choose to believe she would be okay.  Faith in the NICU a few days after she was born. After over 70 days in the NICU, we finally took her home to Watford City. There, she would receive regular visits from an Early Intervention team who would assess her and ensure that she met al...
Read more

Faith's Monumental Visit to South Dakota

-
Image
When I received my niece, Sydnee's graduation announcement in the mail, I thought it might be the perfect opportunity to visit my brother and his family for the first time at their home in Spearfish. I also thought it would be the perfect opportunity to see Mount Rushmore, which I had never seen before!  My nephew in Nebraska was graduating that same weekend, and my sister Dawn and I tried to put together a plan where we could go to both of their graduation receptions. I knew though, that Faith would feel left out and would want to go, too. I also knew it was going to be difficult to find someone to look after Faith over Memorial Day weekend.  Our finalized plan involved Dawn traveling to South Dakota with me and Faith and then her flying to Nebraska by herself. Faith and I would then drive back to Bismarck by ourselves.  3 adventurous travelers  I must admit, as the trip got closer, I started to get a little anxious about how Faith was going to do with so much drivi...
Read more

Our Review of Wheel of Fortune: The New Era

-
Image
This page contains affiliate links and Faith's Mom may earn a commission if you use them. As an Amazon Associate, Faith's Mom earns from qualifying purchases.  Learn more.   Last year, when I heard the news that Pat Sajak was retiring from Wheel of Fortune , I knew I better prepare Faith. When season 41 began, I told her, "This is Pat's last season. Next year, there will be a new host."  Faith likes Vanna but loves Pat!  Faith and I have faithfully watched Wheel of Fortune every night since she was about 5 years old. It's how she learned that AEIOU were vowels. The show was also a great way to reinforce the rest of the alphabet. Counting was reinforced, too. When Vanna turned the letters, she counted how many T's, N's, or other letters there were.  She also learned some geography skills with the different trips they gave away. Upon winning a trip to Aruba, she would ask, "Where's that?" Sometimes I honestly didn't know and had to loo...
Read more