Showing posts with label appointments. Show all posts
Showing posts with label appointments. Show all posts

Saturday, January 28, 2023

Faith's First Extended Hospital Stay

It's hard to believe that Faith is 19 years old and has never had a major illness or extended hospital stay since she was in the NICU. The only other time she had to stay in the hospital was when she had her g-tube placed when she was two years old. That is, until now. And to think it all started with her having a simple outpatient procedure that had nothing to do with the reason she was hospitalized. 

Day 1: Thursday - the Procedure 

Faith and I got up extremely early as she had to be at the clinic for her outpatient procedure. The procedure was a lumbar puncture in order to do a test dose of medication called baclofen, which would help reduce high muscle tone and spasticity. If the results were good, and it helped her muscles relax, we would have the option (in the future) of inserting a baclofen pump so that she could receive the medication continuously via a catheter in her spine. 

I stressed the importance of giving her anti-nausea medication before the procedure because I know how anesthesia affects her. The procedure was very quick and after she woke up, she was happy and relaxed. Her physical therapist came to see her and seemed impressed with the results. The physician who ordered the test also came to check on her, and he was happy with the results, too. I was relieved, because she seemed to have sailed through this without any major complications. She had to lie on her back for about 6 hours before she could sit up. For Faith, this is not an easy thing to do as she much prefers to sit up in her chair. However, they were able to sit her up in bed a bit to help her drink some water, juice, and eat some belvita bites. 

Faith sits up about 6 hours after her procedure and seems totally fine. 

Finally, she was able to sit up in her chair and looked happy and relaxed. About 45 minutes later, though she began to doze off and looked a little pale. She began to retch and try to throw up. After a little bit, she said she wanted to lay back down. The nurse and I were both confused by this because she couldn't lay down while throwing up, plus, she never asks to lay down. Even in the past when her tummy was upset, she wanted to be sitting up. She also began crying that she wanted to go home. I told the nurse we would be okay to go home because I figured the anesthesia was upsetting her tummy. She gave her a dose of anti-nausea medicine, which seemed to help. 

At home that evening, she wanted to go to bed right away, which isn't like her at all. I sat with her on the edge of the bed and all she could say was, "Mom could you please pray for me." Eventually she began to fall asleep, but then was up every couple of hours throwing up. 

Day 2: Friday - First Trip to the ER 

After not sleeping well, Faith wanted to try to sit up in her chair, so I put her in it, but it seemed to make her feel worse. I asked if her head hurt, but she didn't really say. I called the department where she had the procedure and told them Faith had a rough night with lots of nausea and vomiting and that she seemed worse sitting up in her chair. The nurse practitioner said she might be having a reaction to the baclofen and told me to call the doctor who had ordered the test. 

I called him and he said he doubted it was the baclofen because it shouldn't be in her system anymore. I told him I was concerned about dehydration, and he confirmed that I should take her to the ER. She managed to be able to sit in her chair for the drive there. At that point, she was throwing up bile. As I drove, I felt completely helpless as she continued to throw up all over herself in the van. 

Finally at the ER, I checked her in, and we had to wait about an hour before going back. In the waiting room, I felt so bad for her, it was all I could do to keep from crying. She looked so pale. They eventually called us back and took her vitals. Since her vitals were fine, we had to go back to the waiting room and wait for something to open up. We sat there with 3 other families and a guy who was groaning in pain from a kidney stone. It was miserable. I just prayed silently that a room would open and also prayed for all the other people in the waiting room that they would get the help they needed.  

When they called Faith's name, I felt a little guilty for taking her back before kidney stone guy. He had resorted to yelling at the receptionist that he was in pain and needed to be seen NOW! But my Mama Bear instincts were in high gear, and I quickly wheeled her back. They put in an IV and started her on fluids and anti-nausea medication. After a couple of hours, she seemed to be feeling better. They took some labs as well. They also said if she continued to vomit, they could do a CT scan to make sure nothing was going on in her digestive tract. 

After a while she began asking for juice. She also ate a few small bites of a cracker. We had been there for about 5 hours, and she began crying because she just wanted to go back home. I didn't think we would need the CT scan, so we went back home. I realized that we didn't have any apple juice at home and I really didn't want to stop to get any. As soon as we got home, I texted my mom and asked if she could bring over some juice and also some food for me. All I had eaten since Thursday morning was 2 bowls of cereal and a bowl of oatmeal. 

Thank goodness for the apple juice because that is the only thing Faith wanted to eat or drink. All through the night she kept waking up asking for more juice. I really thought the worst was behind us. 

Day 3: Saturday - Ambulance Ride to the ER 

Faith woke up happy and said, "I feel so much better!" Her face had more color to it, and she was actually smiling. I felt so relieved. I asked if she wanted to get in her chair and go watch TV, which is something she hadn't really done since Thursday. She was excited to do that, so I got her in her chair and wheeled her to the living room. 

Right after I turned on the light she said, I think I need to go back to bed. I thought maybe she was just feeling too weak to sit up. She hadn't eaten anything since Wednesday before the procedure. I put her back in bed and asked if she wanted to try some food in her tummy. I diluted some of her blended food and put it in her tummy. She kept it down. I also gave her water, plus she kept asking for sips of juice. 

Late that morning respite care arrived so I could take a much-needed nap. I filled her in on everything that had been going on and we talked about the possibility of Faith having a spinal headache or a migraine. Before laying down, I gave Faith a little bit more diluted food. Faith then asked to sit up, so her respite care provider sat up with her on the edge of the bed, and she began throwing up all over again. 

I knew Faith would be OK with Chris, so I went to lay down for a bit but didn't really sleep as I kept wondering what could be going on. After Chris left, Faith still didn't feel the best, so I called the doctor who had ordered the initial test (he had given me his cell phone number and told him to call if she wasn't getting better). I told him she seemed to get worse when she sat up. He said she may have had a little bit of spinal fluid leak and told me to just keep her laying down for a couple of days and that the fluid should build back up on its own. He asked if the injection site was swollen or red or anything, and I told him it looked good. He just said to keep any eye on her. 

Faith had fallen asleep and I went into the living room and just began to cry. I felt so awful for what she was going through. I was also getting very scared for her because she was so sick. I really didn't know what to do. I didn't think I should keep her home, but I didn't how to get her back to the ER if she was having trouble sitting in her chair. All I could do was pray and ask for guidance. I also sent out some texts and asked members of our church family to pray for her. 

My sister-in-law sent me this scripture, right when I needed it the most! 

When I went in to check on Faith, I thought she felt really warm and took her temperature. It was 101.3! She woke up and I told her I needed to take her back to the ER. I asked her if she could try to sit in her chair just one more time. She agreed to try it but as soon as she sat down, she wanted to get back out. I had no choice but to call 911. I told her she was going to go for a ride in the ambulance. I reminded her about the episode where Mr. Rogers showed his television friends the ambulance and what a paramedic was like. 

As we waited, I scurried through the apartment trying to pack up what I thought I might need. The ambulance guys arrived and Faith asked them for high-fives. They were great with her! After about a 10-minute ride, we arrived at the hospital and this time, she received immediate care. The doctor was in the room right away ordering every lab under the sun. 

They put in another IV (Faith's 3rd in three days) and got her going on fluids and anti-nausea medication. Her vitals were not so great as her blood pressure was really low and heart rate unusually high. They drew lots of blood for the lab work, like 7 vials of it. The other test they wanted to do was a urine sample, which Faith had never had before. It took three tries to get a catheter in her to draw out some urine. Thank goodness for the music of Michael W. Smith, which I played for Faith on my phone to distract her. 

They also wanted her to do the CT scan, which she handled like a pro. When we got back to the room, she was feeling better and kept asking for juice. They couldn't give her anything, though, until after the results of the CT scan. Finally, the test results began coming back and the urine sample showed a uterine tract infection (UTI). There were no abnormalities on the CT scan. The doctor said they would begin treating her for the UTI but he also wanted to do an MRI to ensure there was no complications from the lumbar puncture. He also wanted to admit her to the hospital. Thankfully, her vitals had stabilized, and they had a room open on the peds unit. 

Day 4: Sunday - Admitted to Hospital 

It was about 2:30 in the morning when we finally got up to a room. Thankfully I had grabbed my glasses and contact lens case, so I could at least take them out and still see! Faith was super tired but could not sleep. I tried my best to get comfortable in the reclining chair and as soon as I would get somewhat comfortable, Faith needed me for something. That first night I didn't really ask for help getting her changed or trying to get her in a more comfortable position. There were a few times she asked to sit up in bed, so I sat her on the edge with me but then she wanted to lay right back down. I was just so used to looking after her that it didn't really register I could get the nurse to do these things for me! Faith really wanted me to lie right next to her in bed, which is the only time both of us got a few hours of sleep. Of course, the nurse was in early to draw labs so we didn't sleep for long. 

That morning I thought about how crazy it was that they found she had a UTI. At home, there were no symptoms of that at all. The only thing that may have indicated she had one was the night before she kept asking to be changed even though she wasn't going to the bathroom because she was so dehydrated. I thought maybe she was sore in her back where they did the procedure, and she didn't know how to verbalize that. I wondered if she had never had the lumbar puncture if the UTI wouldn't have been caught until it had gotten much worse. 

All that day Faith was very quiet and not feeling well at all. We did have some visitors and even though she didn't feel like talking, Faith was still happy for the company. She also wanted to make some phone calls. She wasn't very talkative, but she just wanted to do something to pass the time. She didn't want to watch TV or her tablet. She was also very restless and kept trying to move around to get comfortable. I knew her back was sore from laying so much, and I asked if they could give her something for that, which they did. 

That night, Mom came to stay with Faith while I went home to get some much-needed sleep. Faith wasn't too happy about this, but I knew she would be okay with Mom getting the nurses if she needed them. On the way out, I explained to the overnight nurse that I was leaving for the night. I asked if she would be okay doing Faith's meds without me through her g-tube and about changing Faith and repositioning her. She just looked at me like, "Uh yeah, that is my job!" 

It felt so weird being in the apartment at night without Faith. I went into her room and realized she had thrown up all over her sheets and they were in the wash, so I did some laundry and made her bed. I sat in the living room and prayed and read Psalm 139. I knew that God had made Faith and that He knew exactly what was going on with her. I simply needed to trust in His plan. 

Day 5: Monday - One More Test 

On Monday I woke up and got back to the hospital as quickly as I could. It's a good thing, too because they were just getting Faith ready for her MRI. I found out I could not go into the room with her because of my pacemaker. Since Mom was still there, she said she could go in. They gave Faith some Ativan to keep her relaxed and she got to listen to music during the test. Faith stayed calm and did great! 

After Mom left to get some much-needed sleep (and a visit with the chiropractor after sleeping in that chair), I sat with Faith and just waited around for the test results. I noticed she wasn't at restless and she actually took a nice long nap. I was trying to keep friends and family updated so I spent that time texting and sending messages. I also put out a message on the parents of kids with special needs Facebook group asking if anyone's wheelchair-bound daughter ever felt pain sitting up because of a UTI. I received a few responses. One mom said her daughter needs to be in a tilted position if she has a UTI as she is uncomfortable when sitting upright. Later that evening we talked to some of our Inspire friends over the phone and it was the first tiny smile I had seen from Faith in a couple of days. 

The doctor came in and told me the MRI showed no abnormalities. I asked about a spinal headache, and she said if Faith had one, she would have a severe headache. I told her we don't know that she doesn't. I explained that Faith isn't really able to verbalize where she is feeling pain or what kind of pain she is in. The doctor just said that we know she has a UTI so let's treat her for that, first. 

That day they also wanted to get some liquids into her. Part of the reason she was nauseous was that her tummy was completely empty. First, they put some clear Ensure through her tube to make sure she could keep that down. They then wanted to proceed with some commercial formula. They knew I did a blenderized diet at home for Faith, but they said it was against hospital policy to bring any blended food in for her as they didn't know the exact content of the food. I was like, well I could tell you exactly what I put in there and how much, but they still wouldn't go for it. I decided it was one battle I didn't want to fight. I figured it's not like it would be very much and for very long (hopefully!) 

That evening they gave her one ounce of Jevity. It is super rich, and her tummy was rumbling after they gave it to her. They were also checking her blood sugar and after getting just one ounce of the commercial formula her blood sugar was 196! Faith had seen the color of the formula in the bag (it was cream-colored as opposed to the green stuff at home). After it finished, she said, "Now I know what a milkshake tastes like!" 

I told them they needed to dilute it quite a bit or else she wasn't going to tolerate it. Thankfully, though she kept it down. She was also able to get off the anti-nausea medication. Later that day, they gave her a diluted feeding, and another one overnight. 

Day 6: Tuesday - Finally Feeling Better 

Faith and I woke up around 7 after getting a pretty good night of sleep. One thing I needed to do that day was go over to the Heart and Lung Clinic for my pacemaker appointment. Faith said she would be okay with the nurses for a couple of hours. She knew to call for them if she needed help. But I also knew she would call for them just to have something to do! Sure enough, the second I walked out the door, I heard her call, "Nurse! Nuuuuurse!" 

My appointment went okay. I have about 18 months before I need to get my pacemaker battery replaced. I just got it replaced in June 2021, so it didn't last that long, even with the new lead they put in. I saw my pacemaker doctor from Mayo and he said when I get it replaced, there might be some more options available with different features to help make the next one last a little bit longer. I hope so!

Back to Faith...she was fine when I got back. Unfortunately, the nurse didn't know how to find Truth Fellowship Live on her tablet (which is the only thing she wanted to watch during most of her stay). The only other little hiccup was that they hadn't secured the extension to her Mic-key button, so the feeding leaked onto her shirt. When they went to change her clothes, she asked, "Do you have any tie-dye shirts here?" 

I could tell she was feeling so much better. Even the nurses were commenting on how much better she looked than yesterday. They thought sleep and some calories helped to perk her up. I also attributed the sudden turnaround to the hundreds of people who were praying for her. I was still nervous though about how she would do sitting in her chair. 

That evening, the nurses transferred her from her bed to her chair. She sat there for a few seconds and then got a big smile on her face. "Finally!" she said. I had her chair tilted back and after about 20 minutes I put it upright. I asked how she felt and she said, "It's a miracle!"

Faith is finally able to comfortably sit up in her chair! 

She ended up sitting in her chair for 3 hours! An anesthesiologist had come in to talk to me about the possibility of her having a spinal headache and he said she might have had one, but they sometimes resolve on their own. He said he would not have recommended the blood patch procedure on her, considering all that she had just gone through. He said he would only do it as an absolute last resort if she continued to have trouble. 

After that Faith kept asking when she could go home. We all told her that if things continued to go well, she could go home the next day! 

Day 7: Wednesday - HOME! 

Faith and I both ended up sleeping until 10:00 a.m.! They no longer did morning labs because her potassium levels had gone up to normal. The only things she was getting was feedings and antibiotics for the UTI. Unfortunately, she lost her IV twice during her time in the hospital and the night before it had started to come out, so they had to put it in her leg. She had one more dose of antibiotics to get through the IV before they could take it out. 

They also wanted to do 2 full-strength Jevity feedings and see the doctor.  Faith was pretty impatient for the doctor to arrive...she was so ready to get out! The first thing she asked when she saw him was, "When can I go back to work?" He didn't realize that "work" was her day program. He told her she should probably stay home and rest for a couple of days. 

After all that, we started getting ready to go home. Just as we are packing up, we got a surprise visitor - Uncle Todd! She was soooooo happy to see him. A little while later Mom came in as I had asked for her and Dad's help to get Faith home. Somehow, we had accumulated several bags full of stuff that we had to get back home. 

Faith is ready to bust outta here, with help from her uncle! 

My dad went with Faith and I to the pharmacy so she could stay in the van while I went to pick up her antibiotic, which she would need to take for the next 3 days. Then it was homeward bound. She was so happy to see Albert (her fish) and her room. It had all been quite the ordeal and we were both happy and relieved to be home. 

We are so thankful for the wonderful care she received while in the hospital at St. Alexius. The nurses were amazing - from the ones in the ER (like Emma who Faith said reminded her of Auntie Amber), to the ones on the pediatric floor - Brittany, Jessica, Janelle, Pam, Cheryl, and Melissa. They were all angels and I never want to forget them. I am also thankful for all the prayers and help from my parents, especially my mom for staying over one night and for being willing to help wherever needed. It also helped to get visitors to pass the time. 

One final thought is that I'm pretty sure the baclofen did not cause anything. When I talked to the health coach from the hospital over the phone, she said she had a UTI once and didn't feel well at all and just wanted to stay home in bed. She said the anesthesia probably exacerbated the nausea and vomiting since it went through the kidneys. I think everything just happened at the same time, so it was hard at first to pinpoint the exact problem. I'm not in a hurry though to do anything medical related for a while, and I don't think Faith is either! 

Some of the gifts Faith received. 




Monday, August 1, 2022

3 Big Events All In One Week

Here it is the first day of August and one thing is certain: last month was a busy one! Both Faith and I had some important appointments, plus she had her 6-month evaluation for her day program. It's so hard to believe she's been there for half a year already.

Faith at the Sock Hop at her day program
 

The Day Program is one of her favorite things in the world. She loves going and I'm so glad they love having her there. She is a bright light and full of joy wherever she goes. She is also full of encouragement, which I believe is one of her God-given gifts! But besides going to her day program and therapy, Faith had some other major events - all of which take place the last week in July!

Big Event #1: Our First Baseball Game

The first was attending our first-ever Bismarck Larks baseball game. We didn't just attend, though. We both got to go on the field where she placed the ball on the mound and then announced into a microphone, "Play Ball!" This opportunity came about through Kids in Motion, where Faith goes to therapy twice a week. They had asked if she wanted to take part and she exclaimed, "Yes!" 

My contact person from the Larks told me I would get 4 free tickets in accessible seating. It ended up working out so that my sister, her husband, and one of their sons (who plays baseball) were going to be coming up from Nebraska so they were able go to the game with us! 

At the ballpark, while making our way to the entrance, I was totally surprised when a Larks fan saw Faith and took off his jersey and gave it to her! I couldn't believe his kindness and generosity! We then found our contact guy, found my sister and her family, and then went onto the field near third base by the team's dugout to get our directions on what to do. 

Faith had to go to the pitcher's mound, deliver the baseball, and then go back to our spot by the dugout while they sang the National Anthem and made team introductions. After that, I had to wheel her back to field. The guy with the microphone explained to her that he was going to count down from 3 and then she was could yell, "Play Ball." She was so excited though, that she didn't wait until the countdown was done! 

Hanging out with the Graffs on the field before the game.

Faith got to put the ball on the mound!

Afterwards, we made our way to our seats. We had never gone to a baseball game together and I honestly didn't think she'd make it through all 9 innings. She totally surprised me by maintaining her enthusiasm until the very end! It helped that the Larks were winning and there was a lot of music, dancing, and cheering. Plus, the Larks mascots came by quite often, giving her a high-five every time.

I have to say I was totally impressed with every aspect of the Larks organization. Not only was the accessible seating in a good spot, but everything was completely accessible. Even the little gift shop had a temporary ramp placed over the door's threshold so I could roll Faith in there. Besides Faith, there was another little girl with special needs who, with the help of her sister, got to make her way around the entire baseball diamond in between innings. I really liked their show of support for the special needs community. 

Having a ball!

Faith loved Merrifeather Lewis!

Faith and Preston in their "22" Larks Jerseys.

Preston getting an autograph.

After the game the entire team stuck around to give autographs. Faith got one autograph while her cousin went all out and had every player autograph the jersey he had tried so hard to win! It was a really fun evening and the weather was perfect at just 78 degrees. Right after the game, we headed home and got ready for the next day.

Big Event #2: Botox Injections at the Hospital 

Despite needing to be at the hospital at 8:30 a.m., Faith wasn't actually in the operating room until 10:30. One part of the delay was getting the right size sling for the lift to transfer her from her chair to the hospital bed. As they were getting her into the sling and then getting her hospital gown on, it was all I could do to jump in and do it for them. I had to remind myself that this was their job! 

Faith has had Botox in the past but it didn't seem to last very long for her. Also, at that time, she wasn't put under for it, so it ended up being a very traumatic experience every time she did it. I just wasn't sure it was worth putting her through all that trauma and then not gaining very much from it. 

Her physical therapist, however, strongly recommended that we try it again to see how she responded. It was her hope that she would be able to tolerate her foot orthotics for longer periods of time. Plus, it would allow them to work more with her legs in order to increase strength and range of motion. I was hoping it would also help her be more comfortable in general.

Faith at Kids In Motion with some of her OT/PT team

Faith with her favorite nurses for her History and Physical the week before her procedure

 The procedure itself took just over an hour. When I went to the recovery I could tell she didn't feel well and asked the nurse if she had thrown up. She said she did a little bit but they were able to suction it out of her mouth. I was a little surprised she got sick, especially considering how well she had done last summer when she went under for her dental work. But I also knew that considering where she was in her monthly cycle, it was normal for her to experience some nausea around this time of the month. 

It took her a while to fully wake up. They kept her there a little longer just because of her nausea plus her blood pressure was a little low. Finally, though she was able to go back to her room. Things looked promising when she ate some graham crackers and drank some juice. After checking her vitals three more times, they said she could get discharged. This time there was just one nurse and she was pretty busy so I said I could get her dressed. 

We got home around 2 in the afternoon. I tried to do a very watered down feeding at a slow rate to see how she did. She immediately became nauseous again. She told me she wanted to get out of her chair and sit with me on her bed. 

I think part of the issue was that she was feeling sore where they had done the four injections. I tried to talk her into laying down with me, but she refused, most likely because her tummy was upset. So we sat on the bed together for over an hour. I just sat in the most comfortable position I could and rocked her in my arms. She even fell asleep for about 10 minutes. 

She eventually seemed better and wanted to sit back in her chair. I gave her water through her tube and had her drink some juice from a straw. Later that evening, she asked for a feeding and I knew she was past the worst of it. Before going to bed, she asked if she was going to her day program tomorrow, and I told her she could. The doctor had told her she could back into her normal routine the next day. 

After sleeping for 10 hours, I was surprised when she woke up and didn't want to go to her day program. She said, "I just don't want to chance it." I knew she was afraid she was going to throw up again so I told her if she's not up to it then she could stay home. We just laid low all day and didn't do too much because the next day we had a very special dinner to attend.

Big Event #3: Grandpa and Grandma's Belated Anniversary Dinner 

My parent's 50th Wedding Anniversary was actually on June 3rd, which was just 2 days after my dad had partial knee replacement surgery.  Thankfully, he did very well with the surgery but it meant he would need to spend a majority of the summer doing physical therapy and recovering. 

My sisters and I thought maybe we could do something at the end of summer or in the fall. But it turned out that most of the family would be here the last weekend in July so we figured we should try to do something then. We kept it a secret until just a few days prior. They were both very surprised and appreciated the effort we had put forth. 


Grandma and Grandpa celebrating 50 years of marriage!

 
Many family members were able to celebrate with them.

Faith with Grandma, Grandpa, and some of her cousins.

Both of us had such a nice time!

Some of Faith's favorite girls in the world!

And her uncle, too, of course!

Faith and Grace (our amazing waitress who is also Grandma's favorite barista!

Faith's goals for the evening were to deliver Grandma and Grandpa's gift and get as many hugs from her cousins, aunts, and uncles as possible (see video below). As an added bonus, her Auntie Dawn gave her some monster cookies she had made just for her.

After all of that activity, she was still ready for church the next day. Shortly after getting home from her church, her aunt and cousins stopped over to say goodbye on their way back to South Dakota. And finally, our busy week had come to a close. I think we're both ready to get back to our regular routine and not have anymore major events for a while!

We hope everyone has a great rest of the summer!


Thursday, June 30, 2022

One Year Ago: My Trip to Mayo

Today I thought it was quite fitting that on my one year anniversary of my new pacemaker, I was wearing a 24-hour Holter monitor! It's not because I'm having any issues with my pacemaker. Instead, I'm just preparing for my upcoming cardiology appointment next month. 

Thankfully, my cardiologist from Mayo comes here to Bismarck, so I don't have to make the 1,000-mile round trip again! By the way, isn't amazing how small these Holter monitors are nowadays? I remember having to wear much larger ones that could not be hidden very easily, plus it was hard to sleep being attached to a big clunky machine. Last night, I hardly even knew this little one was there!

I got my original pacemaker in August of 1999 but because the lead was getting old, my cardiology team wanted me to get a new one. It was last year on this day that I was recovering from the procedure. It still bends my mind how God took care of every single detail and that I had found enough people to look after Faith for the five days (and four nights) that I was gone.

I am still incredibly grateful for all those who stepped up to look after her. I'm also thankful my sister was able to take me there. Faith still talks about it like it just recently happened. She often mentions that her aunt and little cousin stayed with her a couple of nights and how patient she had to be. 

She also talks about how our friend Mandi looked after her, and she even had her kids and husband come over to visit. I don't know what I would have done without her as she came every morning to relieve the overnight staff and get Faith out of bed. She even sent me a picture of Faith every day!

Faith had loads of fun while I was gone!

Faith told me when Grandma and Grandpa were here, Grandpa did his crossword puzzle and then took a nap. (It's just funny which details she remembers!) There was also the respite care staff who stayed over a couple of nights and also a few other friends who helped out. She will truly never forget it. Most of all though, I think she is proud of herself for getting through that time and being so mature. It helped that I got to talk to Faith every day and even did a couple of video chats with her, which she loved.

Even though it was for a medical procedure, my sister and I made the best of it and had plenty of laughs along the way. Especially when on the way home our sister was heading back from a work trip and we managed to catch up to her on the Interstate, which you can see in the video below!

The double rainbow we spotted just as we crossed into Minnesota

After driving in the dark (and rain) through the Cities, we were very thankful to reach our comfy hotel room.

Our hotel was conveniently located just across the street from where I would be having my procedure. This is also where I had my last open heart surgery in 1999 and my original pacemaker implantation.

Taking the shuttle from our hotel to the downtown campus for a day of medical tests.

Hanging around waiting for the last appointment of the day.

My sister even was able to get some work done!

After a long day, we were able to eat at our favorite restaurant in Rochester!

Me after my procedure...I was just a tad groggy!

Grateful that things went so well!

After a night in the hospital and an extra day recovering, we were ready to hit the road again!











Who is that ahead of us on the Interstate? Let's find out!     


Tired but happy sisters reunited in Bismarck!

Grandma is there too, and Faith is super excited to have us all there!

Hopefully it will be awhile before I need to go to Mayo again for a medical procedure. If I do though, I know God will provide and Faith will be well looked after!

Sunday, May 16, 2021

Ready for Summer (And Some Rain)


Every year in May, Faith and I run into the same problem. It's hard to focus on school this time of the year! I know most families are probably in the same boat. What makes it extra hard for us is that Faith's homeschooling group, Inspire Collective, ends the last week in April.  In her mind, Faith is already done with school! This beautiful weather does not make doing school any easier. However, it is great for doing some fun activities, like the things we have done this weekend.

On Fridays, Faith and I usually take a trip to the library. It was during this past Friday that I realized in the evening the Band Day Parade would pass close by the library. 

We have gone in the past and Faith loved the marching bands! This might sound strange considering she gets startled by loud noises, but for some reason, she just loves them! She also really likes parades. It was the perfect evening for one. 

Faith and I enjoyed "dog watching" and seeing all the different kinds of dogs people brought to the parade. I fell a little bit in love by an orange puffball of a Pomeranian that came over to say hi to us. The parade itself was fun, and the marching bands were great. (Like this band in the video, that represented several schools from the southwest corner of the state. Can you guess what song they are playing?)

Besides taking in the parade, we also took in the kindness of others. One lady in front of us made a point to move so Faith could see better. Another lady offered Faith some of the candy that had been thrown her way. One lady that was in the parade came running over to us, said "Hi" to Faith and gave me a hug saying, "God bless you." Faith just looked at me and said, "Why did she say God bless you, it's not even Sunday!" I honestly don't know why she did that, but it did bless me! There was also a five-year-old boy who made friends with Faith and introduced us to his older brother and younger sister.  

The next day, Faith was super excited to finally go to the Northern Plains Dance production, "Sleeping Beauty." This has become a tradition for us ever since the mom of Faith's friends gave us complimentary tickets one year to "The Nutcracker." We have gone to that production every year since then and also their spring productions.

Me with Faith and my great niece
Last year, the spring production was canceled and we also had to watch "The Nutcracker" via livestream. That was fine, but it's just not the same as being at the Belle Mehus in person! This year, Faith's grandma and cousin came along. It's always special to share these wonderful experiences with others. (When Faith asked where grandpa was, grandma said he was home watering trees). Faith also saw a few of her Inspire friends after the program. 

Honestly, we don't usually do so much in one weekend, so I wasn't sure if Faith would be up to going to church the next day. She said she wanted to go, however. I'm so glad we did! We went to a church we had visited last week. When we pulled into the parking lot, where they actually had an open handicap parking spot, there was another van just like ours! Same make, model, and color.  (Note to churches: those handicap spots fill up fast, maybe think about adding more!) 

When we rolled into the sanctuary, I was trying to find a place in the back and a lady came over and asked if we wanted to sit with her family. She grabbed me a chair and Faith sat next to her son, who was also in a wheelchair. Turns out, they got their van in the same way we got ours, through a fundraising effort. It was nice to share stories about how God provided for every one of our children's needs! 

Still thankful to my brother for helping us get our van (and the paperwork taken care of!)

 We truly had a blessed weekend. Tomorrow is Monday and Faith heads to occupational therapy (OT), which she does twice a week. I will have to write a separate post about that, because it's been really interesting and helpful for her. We will also try hard to finish our last 10 days of school!

It's supposed to be nice all week in our neck of the woods, so hopefully everyone can get out and enjoy the nice weather. Although, if it rains, nobody will complain, as we desperately need it.


Saturday, June 24, 2017

Faith's Summer So Far

Despite the fact summer officially began only a few days ago, for us, it feels like it actually began in May. Since we've begun to have such wonderful weather, Faith has been wanting to get out and about, which has been fun for the whole family. In early May, the three of us ventured to the river where the boats, dandelions, and motorcylists were all out in full force.

Enjoying the great outdoors!
The banks of the Missouri River - one of Faith's favorite places!
Besides going to the river, the library, and elsewhere, Faith has also enjoyed spending some quality family time at her Grandma and Grandpa's. On Mother's Day we enjoyed our first official barbecue of the year. Faith enjoyed getting to know my sister's dog, Snickerdoodle, aka Snickers, a little better. He is such a good dog and quiet too, which is why Faith likes him!

Happy Mother's Day to me!
My sister Dawn and I along with our mom!
Faith's new favorite dog is Snickers!
Toward the end of the month we made our way to our first ever visit at Gillette Children's Hospital in St. Paul, MN. Here we saw a doctor who told us (much to our relief) that since Faith is not in pain, there is no need to do surgery on her left hip at this time.

We were scheduled to go back at the end of this month for one of their specialty clinics where a team of pediatric specialists will be able to evaluate the amount of spasticity she is having and find some ways to decrease her tone. Since the referral process has been slower than we anticipated, however, we needed to reschedule for mid-August.
Faith cruising around in Minnesota!

Scenic view in Rogers, MN where we stayed
Sometimes I feel like my whole life revolves around making phone calls and getting paperwork in order, not just for her but me as well! Earlier this month, I saw my cardiologist who comes to Bismarck every three months from the Mayo Clinic. I am still retaining a bit of fluid so he tried to put me on a second diuretic, along with the one I'm already on.

During the 8 days I took it however, I came down with three migraine headaches and didn't feel well in general. I'm so glad I have a doctor who quickly answers my e-mails because after sending him a message regarding the new medication, he told me to stop taking it for a week to see how I feel. I'm hoping the medication was the culprit and I can discontinue taking it -- the fewer meds the better!

Of course June also means celebrating Father's Day and so we had an early celebration at Grandma and Grandpa's to honor my dad, my husband, and my sister who pulls double duty as a single mom. Two of my nephews, who are also dads, were there as well, and we got to meet to the newest addition to our family -- little GracieLynn. On the actual Father's Day, the three of us had a perfect day at home relaxing, watching movies, playing video games, and calling our dads.

Faith with her dad and grandpa
My dad and I
Faith with grandma and her two baby cousins - Marla and GracieLynn
Faith and I have also been getting back to another of her favorite summer activities -- spending time on the patio. No matter how windy or cool the weather is, she is still determined to sit down there. She has fun laughing at me when the wind causes something to blow away and I have to go chasing after it. We also have fun watching the birds, and every once in a while, we spot a bunny and a gopher or two.
One of the cooler days on the patio - and that's not a bug on her face, it's chocolate! She enjoys her snacks!
Unfortunately, it has been hot and windy and in early June, we nearly hit 100 degrees, which it usually doesn't do until July or August. The entire state is having drought conditions and in much need of rain. There was one day however where we did get a nice shower of rain and with it, a double rainbow! Faith had been asking when we were going to see a rainbow in the sky so she was very excited. I took this picture, but there were other photos on Facebook that showed it was a full double rainbow, which always gives me a renewed sense of hope that God will fulfill His every promise. 
Double rainbow - double blessing!
Our family has gone through some challenges, some related to my health, some related to raising a 13-year old girl and all of the hormone-related things that go along with it, and others regarding some personal things that have affected us. Through it all, I continue to cling to His faithfulness and this promise in God's Word: Understand, therefore, that the Lord your God is indeed God. He is the faithful God who keeps his covenant for a thousand generations and lavishes His unfailing love on those who love Him and obey His commands. Deuteronomy 7:9