Today marks another huge milestone for my mom. We are celebrating 62 years of her life! My mom and her brother Jeff turn 62 today!! If you have not figured it out, yes, my mom is a twin! We have had a jam-packed day of visitors and presents. My mom feels so blessed and special. From the big smiles she has been throwing us….I know that she feels very honored!
It started yesterday when her friends Dori & Amy came over to plant flowers in our flower boxes. This was the best present ever…because it is hard for me to go and get flowers with my mom. They look great! Thank you Dori & Amy!
Dori & Amy
Today we had our bio-feedback session with Deanna, and then our visitors included Jane, Joey, Catey, Louann, Aunt Sam & Uncle Jeff, Amy, Megan & my sister Jenna. We were going non- stop all day. Of course we did our usual “cook-out” and ate in honor of my mom. We even had a little cake for her. I must say…we had nothing planned today, and it turned into the perfect day.
Mom, Jenna & Dad with birthday cake
Mom and I goofing around....I am unfortunately without makeup AGAIN!!
My uncle Jeff (mom's twin brother) reading my mom her birthday card
Amy gave mom a bright and fun new blanket. No more blah! They needed their shades it was so cool!
And now I am on what remains of my break time. Looks like I am getting about an hour tonight….so I am going to make this short. Thank you again to everybody for the birthday wishes to my mom! I have read her all the comments on Facebook, emails and cards. She has loved every one!!! xoxoxo to you all!
Prayer for Julie: pray for continued peace from mom’s anxiety. Things have continued going very well! YES!
Just a quick little update on the Eagle gals. My mom, Jenna and I have had a very boring weekend of TV watching and looking at the pouring rain through the window. Well, it was more my mom and I…..with Jenna coming and going to give me some breaks. My breaks were always during crazy times (like tornadoes in the twin cities), so I can’t say they were super relaxing. Thank you anyway Jenna! You know I appreciate it! Even when you are running around the house like a crazy person afraid of the “big bad storms”! haha. My dad was supposed to arrive home today, but the car managed to breakdown. haha. I just had a feeling that would happen! If you had read my previous blogs… you might remember that my dad took my Saturn that I had racked up 180,000 miles on & doesn’t get driven too often. I don’t even remember what my dad said needed to be replaced…but it took all day for the repair place to get the part. He has been stranded in Wausau, WI. It was a cheap repair though! Luckily my mom and I have been doing pretty well. The new season of the Bachelorette just started, so we are in good shape for the evening. My dad should arrive home tomorrow and give me a well deserved evening off . On a positive note, my mom and I did get out today to enjoy the beautiful day. We went for a very long drive and got some errands done. It felt wonderful being outside again!!!
That is it for now! Short but sweet!
Prayer for Julie: Pray for continued peace from anxiety! Things have been going very well lately!
My Aunt Mary, Cousin Shawna, Uncle John and Cousin Aaron
This morning my mom, sister and I got up extra early to do something special with our immediate family. About 2 years ago, my aunt Mary (my mom’s younger brother John’s wife) passed away from pancreatic cancer that took her life away from us tragically fast. Mary was the most caring and nurturing person. She was also a lot of fun and a wonderful mom. I remember when my mom was diagnosed with ALS, she organized a huge benefit for my mom to help with our medical costs. It is still hard for us to believe that she is no longer walking this Earth. Mary decided to donate her body to medical research, so after 2 years, we were able to bury her ashes today. It was sad re-opening the loss that we have all mourned, but it is nice having the closure and a place to go visit her. It also felt nice having another opportunity to honor and remember her. We love you Mary & you will always be missed! xoxoxo
Everything else has been going pretty well for us. My dad made it to Michigan in the Saturn. If you hadn’t read the previous blog, my Saturn has over 180,000 miles on it….and my dad decided it would be a fun challenge to take it to MI. It hasn’t been on a long journey in years, so we were a little skeptical. We are happy he made it there! Now we just have to worry about the way back. My dad said he was getting 38 miles to the gallon….so he is pretty excited.
Yesterday mom, Jenna & I did a little shopping. Actually, mom & I enjoyed watching Jenna spend her own money. It was fun!
Jenna putting her plastic to use
We hope that everybody has a wonderful weekend! It is pouring rain outside our window right now….so we might be stuck in the house a bit. Happy Friday!
Prayer for Julie: Pray for continued peace from her anxiety
We have had a nice busy week so far. Things have been running pretty smoothly on our end. I would say that changing my mom’s medications around has gone well so far. We have been dealing with a lot less anxiety & seeing a lot more smiles. It has made getting out of the house a much more pleasant experience. Hopefully we are only going up from here. My mom is still feeling “sensations” in her skin. She at different times feels the sensations of magnets, tacks, coins and worries about cutting a membrane. I am still not even sure what that means. She knows that it is not possible to have these things under her skin….and usually lets the topic go rather than getting upset. I think that we are just coming to accept that these feelings might be here to stay…but we will still pray that they go away!
Monday we went to see Bridesmaids with my mom’s bestie Amy. It was such a nice day out that we felt a little guilty seeing a movie, but heard it was really good. The reviews were right! I just loved seeing my mom laughing and smiling away. I think we would all highly recommend it!
Yesterday was full of visitors. From the moment we woke up (which wasn’t until 10:00 hehe) we had our nurse Veronica come over for her weekly visit. Then my Godmother Mary came over, followed by Catey (who helps us out), my cousin Lindsay & her baby Sylvia, then my uncle (Lindsay’s dad & my mom’s twin brother) stopped by. My mom loved all of the company. People & visits give her fuel and energy. My cousin Lindsay also gave my mom a much-needed haircut. We usually head over to her salon…but Lindsay offered to do it at home this time. We creatively managed to get it cut while my mom was in bed and it looks great. Thanks Lindsay!
My cousin LIndsay trying to give my mom a haircut in bed. She can do anything!
Last night Jenna came over to give me the night off. We grilled dinner and ate as a family (which was very nice) and then I ran some errands for myself. Our dad is heading to Michigan to visit his dad for a long weekend, so it will just be the ladies this weekend. He is taking my Saturn (which has over 180,000 miles on it) so we appreciate prayers for a safe drive! It is a great car…and does great on the gas mileage….you just never know.
And that brings us to today. The weather is GORGEOUS….so we went for a walk at the pond area with Jenna. Jenna practiced her wheelchair driving skills to give me a little break. It isn’t as easy as you think to get a good consistent speed. Jenna makes me laugh and laugh when she is driving the thing. She is getting better though!
Mom and I after our walk. My smile looks strange...but I love my moms!
And that is all for today! Thank you for checking in!
Prayer for Julie: Pray for continued peace from her anxiety & less “sensations” in her skin
Prayer for Roger: Pray for a safe journey to Michigan this weekend.
I saw a couple of deer running through our neighborhood while I was driving! They are so beautiful up close.
Well, it wasn’t really that much of a funday. My mom and I pretty much spent most of the day relaxing. We had every intention of going out on a walk….but I wasn’t feeling too well. I had her wheelchair out and ready, clothes picked out and everything! Don’t worry, I am not full-blown sick. Was just feeling dizzy-ish with stomach ache for some reason. I feel much better now. It is so nice to see the sun out…and that we have some beautiful days in the EP coming up. We look forward to enjoying them!
Yesterday my brother stopped over again with his boys. This time he had his oldest boy Joshua & we hardly ever get to see him. He is in fifth grade and lives with his mom. He loves hanging out with his half-brother & step brother, and the boys enjoy having sleep overs together. I love that they are such good friends. So, after another crazy fun-filled visit from the boys, we cleaned the house back up & dad gave me my much-needed night off. Thanks dad!
Nate & his boys. (from left: Joshua, Julian & Jordan). It is impossible to get them all to stand still and smile nicely for a pic...but this was pretty good!
Julian & Joshua playing with dad's iphone
Panic attacks have been going pretty well lately. We haven’t changed my mom’s medications long enough to know for sure. My mom’s feelings can change on a dime. We have had brief periods of anxiety…but they have not lasted very long & I have been able to distract her from it. Distracting her usually involves showing her pictures on Facebook. haha. She just loves seeing what everybody is up to.
That is about it for today. We are heading to the movies tomorrow with our friend Amy to see Bridesmaids. I heard it is over the top funny….so I look forward to seeing my mom laugh away! I will let you know!
Thanks for stopping in! Oh, and here is a cute picture of my mom and I that I found from when I was little! Looks like I have a Kool-aid mustache
My mom (in the red dress) and me (in the yellow) back in the day at what looks like a birthday party
Prayer for Julie: Pray for continued diminishing of panic attacks & skin sensations
We just got back from our ALS clinic appointment. We were there for 4 hours and met with mom’s neurologist, ALS chapter coordinator, nutritionist, physical therapist & speech pathologist. They all do such a great job. We have some things that we are going to try with switching around medications. We will stay in close contact with them over the next few weeks. We also addressed a lot of other small issues we have been dealing with. One interesting conversation that we had was with the speech pathologist about “Eye Gaze” technology that would allow my mom to spell sentences out on a keyboard using her eyes. We have been considering this for a while…but find our form of communication very convenient at the moment. Looking at it now, we think it could be helpful for my mom when she has a bunch of things to say. I think that we are going to start looking into it. This technology was not available a couple of years ago, so it is pretty cool.
Overall, we are hopeful that some of these medication changes will help. My mom seems happy with how our appointment went as well. We are now settled back in the house, my mom is back in bed & we have all eaten lunch. I think it is a time for a well deserved NAP! Good night everybody! And thank you to all the people that have been praying and checking in with us. Your care & concern is so greatly appreciated!
Well, we have continued to deal with anxiety the past couple of days. It hasn’t been at an all time high like it was last week……but it is still way up from our every day “normal”. It is like my mom is sitting on pins and needles at times. We have her ALS neurology appointment tomorrow….so we are excited! Hopefully they can give us a different drug or something. We don’t like to turn to medications, and try to treat my mom as naturally as possible….but we don’t deny modern medicine either. We try to keep a good balance of both. Or maybe they can change a ventilator setting. It could be a million little things. I will report back to you…for those that are interested! We appreciate the continued prayers in this area!
Yesterday our friend Catey came over to help us out around the house & I snapped a quick picture with her and my mom. Catey had been such a blessing to our family over the past 5 years. The ALS association pays for 18 hours of Home Health Care, and when I told them that we only needed help with cleaning, they said that was not a problem. We went through several HORRIBLE Home Health Aids and I was so stressed every time they would send somebody new. I also felt horrible asking them to clean. And then one day the clouds parted & Catey showed up at our door! Hallelujah!! Over the past years she has become a member of our family, one of my best friends and we don’t know what we would do without her. She is amazing!!! And she is the only other person outside of our family that can communicate with my mom and pretty much knows what she needs. We have often threatened that she can never leave us. haha. We love you Catey!
Catey & Mama Jules
Last night I hung out with my friend Cate & got to visit with her kiddos before they went to bed. I don’t get to see them very often, so it was a lot of fun! We were having some crazy weather yesterday…..so I guess that my family was battling tornadoes back home in EP and I had no idea. All was ok in the end! I snapped a cute picture of Cate and her daughter Avery reading a Mother’s Day Cook Book Avery’s class made. Ahhhhhh. Thanks for some great conversation and vino Cate!
Cate & Avery (Avery was also Jenna's Flower Girl)
Cate also has a wonderful fashion blog at www.wildruffle.com. If you know Cate or her mom, you know that they are quite the fashionistas. Wildruffle is often having drawings for jewelry and fashion accessory giveaways, so I recommend checking it often! I might not dress up much when I am hanging out with my mom, but I always look forward to reading what Cate has come up with!
And that brings us to today. My mom and I are watching the twins game right now. We just scored a 3 run home run……so we are hopeful we could actually win! I am hosting our final book club tonight (we take a little break for the summer)…so I am looking forward to getting together with my ladies. We read “Half Broke Horses” by Jeannette Walls. It was a really fun read…and my mom enjoyed it as well!
I will let you know how tomorrow’s appointment goes!
Prayer for Julie: Pray for a neurology appointment that offers us some guidance, knowledge and solutions as we enter some new territory.
Big oops is right! After a crazy morning of getting up at 5:30 am, driving our butts downtown to HCMC & finding the perfect handicap parking spot (all with 15 minutes to spare)…..we find out that I had written down the WRONG DAY!!!!! I felt so crazy. I am a triple checker and NEVER do anything like this. I had written down the 2nd when really our appointment is on the 12th! My mom and I don’t usually get up until 10:00 am, so this was very early for us. Luckily, neither parent was upset with me. My dad even seemed a bit happy at the prospect of having a day off. It was odd being out and about so early….so we decided to head to D’Brians for breakfast. That was something we haven’t done in about 7 years! After breakfast my mom didn’t want to go home (of course) so we drove around and looked at houses (since Jenna & Ross are starting to entertain the idea of moving). It was nice to go for a drive & then after getting mom tucked all back in bed I took a huge nap! Now we are back on schedule!
Ok, I wanted to update those of you that have been asking how our appointment went. We will have to let you know next Thursday! haha. I am a dope!
Dad enjoying his breakfast
Mom in her 30's on princess Di's Body. Pretty good!
We hope that everybody enjoyed the Royal Wedding as much as we did! My mom and I saw on the schedule that coverage would being at 3:00 am, so we decided that was when we would start watching. I kept asking my mom if she was sure…..and she kept saying yes. She even went to bed early! Well, 11:45 which is early for her. I decided I would pull an all-nighter to ensure that we wouldn’t miss a thing. Also, I don’t usually go to sleep until just before 2:00, so this wasn’t much of a stretch for me. My mom has always had a fascination with the royal family. Especially Princess Diana. I remember her always buying the tabloids in the grocery store line when her face was on the cover. I think my mom thought she was a royal in a former life. haha. I was the one who broke the news to her when Princess Diana died. She couldn’t believe it. She loved her Diana! So, back to the other night/morning. When I woke my mom up at 3:00 (like she insisted that I do) her body was not having it. So, I watched for another hour and a half & kept telling her when I saw people she would care about like Fergie & her daughters (with the crazy hats). She would pop her eyes open…and then fall back to sleep. So, I plowed through and fully woke her up when Kate appeared in her dress. We stayed up and watched most of the ceremony….and by then I was done. It was to bed for me! The only problem was my mom was now awake. haha. I begged her to go back to bed….and she said she would. She let me sleep until 1:00 that day, and we were all thrown off! It was fun though, and I will always be able to say that I remember the day….and I watched it live with my mom. It can’t get better than that!
Last night we went to our last Swarm game of the Season :(. We lost which was a bummer….but fun just the same. We had so much fun going to the games this season & we will miss them. I have really enjoyed getting to know the sport of Lacrosse, and find it very exciting to watch! Jenna was sad to have her last game come & go, but looks forward to hopefully being back next season. Go Swarm!
Tomorrow we head to HCMC for a 9:00 appointment with our ALS neurologist. Getting my mom to HCMC by 9:00 means we will be waking up super early. That is a whole lot of work for us so early in the morning. We are looking forward to hopefully getting some answers on these skin issues and panic attacks. Keep those fingers crossed!
Thank you for checking in with us! If you enjoy hearing whats new…..please “like” our page on Facebook. Just search “ALS Changed my life” and hit “Like”. Thank you for the support!
Prayer for Julie: Pray for a stress free doc appointment tomorrow with some possible helpful answers/solutions