It's Been a Weird Week

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Last weekend, Faith seemed to be struggling with a cold. On Sunday morning, I thought she had slept it off, but unfortunately, it hit full force that evening. Because she was so stuffed up, and had a lot of drainage, she did not sleep well that night. I tried to put her adjustable bed up as much as I could, but it still wasn't enough. Around 3 in the morning I put her in her chair where she slept for a few hours. After I put her back into bed, her sleep was still pretty disruptive. Finally, around 8:30 she had had enough and just wanted to get up for the day.  On Monday, we called to cancel her Tuesday therapy sessions. She was bummed about having to miss aquatic therapy and occupational therapy but took it well. I was trying my best to help her feel better by giving her nose spray (which she was actually asking for), keeping her humidifier going, and also doing this face mask thing that makes steam so that she can breathe it in. She calls it her inhaler.  On Wednesday, she ...
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Tuesday Tidbits - Paperwork, Cupcake Sheets and an Upcoming Appointment

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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.

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It's Been a Weird Week

-
Image
Last weekend, Faith seemed to be struggling with a cold. On Sunday morning, I thought she had slept it off, but unfortunately, it hit full force that evening. Because she was so stuffed up, and had a lot of drainage, she did not sleep well that night. I tried to put her adjustable bed up as much as I could, but it still wasn't enough. Around 3 in the morning I put her in her chair where she slept for a few hours. After I put her back into bed, her sleep was still pretty disruptive. Finally, around 8:30 she had had enough and just wanted to get up for the day.  On Monday, we called to cancel her Tuesday therapy sessions. She was bummed about having to miss aquatic therapy and occupational therapy but took it well. I was trying my best to help her feel better by giving her nose spray (which she was actually asking for), keeping her humidifier going, and also doing this face mask thing that makes steam so that she can breathe it in. She calls it her inhaler.  On Wednesday, she ...
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Guest Post: Who Needs Sympathy?

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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...
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Every year, the one thing Faith wants to do for the 4th of July is go to the parade in Mandan. It surprises me how much she loves parades, considering the noise and crowds of people. About 20,000 people attend the annual 4th of July parade, and it's filled with very loud firetrucks, big machinery, trucks, and other kinds of loud noises. This year, there was also the concern that it would be more crowded than usual. This was due to the fact that part of the normal parade route was under construction.  Besides all that, the Parade starts at 10:00, which means Faith needs to wake up pretty early so that we can arrive in time. Neither of us had slept well the night before, so I was already concerned that she didn't get enough sleep to get through the long, busy day. I let her sleep as late as possible and prayed for us both to have enough energy to make it through the day. It helped that we could do her morning feeding enroute and also during the parade. She normally doesn'...
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Faith's Blended Diet and Other Things that Help with Her Digestion

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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.   Ever since Faith was born, she has struggled with her digestion. When she was in the NICU, she would spit up after eating even the tiniest amount of formula. Her dad and I were convinced her tummy was too small to handle large volumes of food. Sometimes when she ate, her heart rate would drop really low, which is why she needed to be in the NICU for longer. She just could not get the hang of eating and breathing at the same time!  Faith receiving food through an NG tube in the NICU.  Grandma giving Faith a bottle when she was 2 months old.  After finally bringing her home, eating continued to be an issue as she struggled with severe reflux and constipation. We tried various formulas, but she was never able to drink enough formula to gain a lot of weight. She also had trouble burping, and she...
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