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

Tuesday Tidbits - Paperwork, Cupcake Sheets and an Upcoming Appointment

-
Lately I've been inundated with paperwork so that Faith can continue to receive SSI and Medicaid. Just recently I had to fill out forms to prove to the good  people at Social Security that Faith still has a disability and is still eligible to receive funds.

It was a lot of paperwork considering I had to verify all of her doctor's appointments within the last 12 months and also to prove she had been seeing a physical therapist, occupational therapist and speech therapist. 

Faith went to the SSI office with me on Monday since she didn't have school. The little waiting room was packed but we thankfully didn't have to wait long. When we left Faith yelled out, "Bye guys!" She was pretty happy to get out of there.

Most people who know Faith knows she has a slight obsession with cupcakes. She always wants cupcakes for her birthday and for Christmas we make and give out Happy Birthday Jesus Cupcakes. She has had a pair of pink cupcake pajamas and now has green ones. She even has a stuffed cupcake that was made for her by one of her aides at school. Then her auntie Barbara came over one day and gave her a decoration to hang on her wall - a picture of a cupcake.

I have been thinking for a while how cute it would be for Faith's room to have a cupcake theme. So, imagine my excitement when I actually found pink sheets with cupcakes on them! I found them at Kohl's and not only did I have a $10 off coupon but they were also 60 percent off. They are perfect for Faith's new bed that we got her this past summer. 

Faith seems to like her new cupcake sheets!

This Friday Faith sees her specialist who keeps tabs on how all of her therapy is going and measures her range of motion in her arms and legs. We'll also be getting hip x-rays done so we'll be able to see how her left hip is doing. It is slightly displaced which causes her left leg to be slightly shorter than her right one. 

I'm praying there is no change, but I am expecting a round of upcoming Botox injections. Her leg muscles seem tighter, and I think her not sleeping well lately might be a result of that. I am a bit relieved she'll be seeing her specialist as I am concerned about her hips but as always with this appointment, I am feeling a little anxious as well.

Lots of things going on, I'll be updating about Faith's appointment later this week. Please pray with us that all goes well, and that Faith continues to progress as well as she has been.

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