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Posted 2018-08-07T03:00:00Z

8/6/18, 10:15 PM

As these posts are becoming more scarce, we are working harder than ever to get my mom back into good health. Obviously in the last several months, much has happened that we have been wanting to share with everyone, some good news and some bad, but overall my mom continues to progress. I'm going to try to explain everything as chronologically as possible, but for those of us who have been around everyday, most of it is an honest blur.

My mom's eyesight is subpar. We have known that, since her stroke, the possibility of her eyesight being regained completely was small. We have known for a while that she had damage to her optic nerve, which will most likely be irreparable. Until recently, we were unsure how extensive the damage actually was. Figuring out her eyesight was not an initial priority because she had so many other issues to overcome. We knew that there wasn't much we could do to actually help her eyesight if it was damaged in the optic nerve. When we finally got around to taking her to a specialist, we were informed that the damage to her optic nerve was so severe that she probably couldn't see anything whatsoever. We know, however, that this is untrue. My mom has proven herself time and time again that she can see, sometimes better than others, but with the capability nevertheless. Although we don't know exactly what she can see, she has been declared legally blind because her vision is impaired enough that she cannot always see. This does not mean she is completely blind, and we are hoping that, despite what the specialist told us, there will still be room for growth.

Since my mom got home, therapy has been extremely important to her progress. For now, physical therapy is visiting thrice a week, occupational therapy is visiting twice a week, and speech therapy is coming as it gets approved (slowly, but when they can). This does not include Kim and Jane, who have been helping with occupational and speech therapy on the side, but frequently enough to help in my mom's progress. My mom is able to brush her own hair every morning and brush her own teeth every night. She is extremely committed to her recovery and constantly pushes herself out of her comfort zone, mostly when it comes to her ability to stand. She has stated on several occasions that she feels like she's in someone else's body because it still feels foreign to her that she has issues with activities that we take for granted everyday. It takes many people to help my mom stand up, to put weight on her feet again so she can rebuild the muscle that she lost in her legs. My dad is active in helping my mom to stand with help from my mom's therapists, and sometimes just the family. My mom asks to stand sometimes because she misses the feeling of it, but because it can be so difficult for us to stand her without much help, my dad has invested a little. He bought a rock climbing harness and has been attaching it to the hoyer lift to get her on her feet more often. We are hoping that, once she is used to putting more weight on her feet, that she can use it to help start walking as well. On occasion, we time how long my mom is able to stand up for. She asks us to extend it every time, going for two minutes, then three, etc. With all the help that we have been getting for my mom, she is progressing really fast. We can actually see her improvements day-to-day and we are all really proud of her.

When it comes to swallowing, my mom still has a bit of trouble. She still remains mostly on tube feedings, but we try to feed her beforehand incase we can get her to eat anything, knowing that if we try any other time she may be full and won't want to eat. We are hoping this improves because of recent events that are unfolding as I write this to you. My mom has been anemic since this all started, and because of that she has been receiving iron with her medications. We think this may be binding her up, to an extent, and causing her an upset stomach, which would explain why she wouldn't want to eat. At the moment, however, we are not giving her iron anymore. Instead, she is getting IVs, which is placing the iron directly into her blood stream, bypassing everything that might be causing other issues. Every time we bring her back, the numbers get better.

The medication that she is on for her blood pressure has also been significantly reduced, as well. When we brought her home, she was receiving 1600mg of labetalol everyday, and now she is only taking 200mg/day. This has been a rollercoaster for all of us, because sometimes her heartrate gets too low so we cannot administer her medication despite her high blood pressure. Several weeks and many calls to her doctor later, we have arrived at the conclusion that the quantity just needed to be reduced in order to keep both her heartrate and blood pressure at healthy levels. We are continuing to watch this, and we hope this is the case. We are still in the trial phase for this, though, so it may change soon. This is a fairly recent change for us. 

There have been many changes with my mom, but overall she is very awake, very healthy, and very determined to recover as soon as she can. I apologize that I haven't written in a while, I know a lot of people have been asking me to every single day, and a lot of people have texted me wondering how she's doing. It has been difficult to organize my thoughts recently, but hopefully I won't go this long without writing again. 

-Kaitlin

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Comments (19)

  • Judith Eaves
    Judith Eaves

    Kaitlin, Thiswas an awesome update and I am very proud of all the information you let us know about. I know I see a difference every week when I see her, she has a sweet heart and a wonderful and strong attitude and is trying very hard to do better every day. Thank you again for all this wonderful information. Love to you, your father and the kids. See you soon.

    one year ago · Reply
  • Kerry Sullivan Rosenblatt
    Kerry Sullivan Rosenblatt

    Thank you for this update. I think of her so very often. I can only imagine how much thought and energy it takes to write such a detailed message. It’s very generous of you for keeping us updated. Very grateful- Kerry S.

    one year ago · Reply
  • Doris Cvinar
    Doris Cvinar

    Kaitlin, Thank you for the update. Always praying and thinking of Suzi, you and your whole family.

    one year ago · Reply
  • Rachel Baker
    Rachel Baker

    Your words are so full of love and strength. Yes.... day by day is a blur but the day to day progress is heart warming. Thank you Hugs to all.

    one year ago · Reply
  • Michele golio
    Michele golio

    Thanks for the update kaitlin! Glad to hear she is improving and her attitude is good. With the dedicated family support she has and a good attitude her progression will continue to move forward. Please tell her i was asking for her and to keep staying positive and keep fighting. Also know kaitlin that you, your dad, your brothers and the rest of your family are doing a great job! Hugs to all! Michele

    one year ago · Reply
  • Carol Goyette
    Carol Goyette

    Thank you for the update and all that you do to help your Mom who is still that same Mom even though her body is different! You are her world!

    one year ago · Reply
  • Kelly Shinnick-Millstone
    Kelly Shinnick-Millstone

    Thank you so much for the post about your mom. The Millstones think about her and all of you every day. It is a miracle to hear how she is recovering each day and I am sure it is quite a struggle but your mom is such a trooper. All of you are. Faith, family and a strong will, will help her go far. If there is anything you ever need, please let us know. Keep going Suzi! You got this! Love the Millstones

    one year ago · Reply
  • Lucia Palazzolo
    Lucia Palazzolo

    Thank you for making the time to provide this great update. I think of Suzi often (yet still have not met in person...although my son Victor has been to your house a few times (thanks Matt!). Sending many positive thoughts that things continue to improve 🙏🏼 Luci

    one year ago · Reply
  • Dave Kiddoo
    Dave Kiddoo

    #jozokosfamilystrong !!!!!

    one year ago · Reply
  • Karen Plumley
    Karen Plumley

    ❤️

    one year ago · Reply
  • Laura LaValle
    Laura LaValle

    Dear Kaitlin, thank you for sharing your heart and your Mom's journey with us. You are so blessed to have a community that loves you all but it is us (family, friends, acquaintances) that are truly blessed. I remember your Mom so involved with the community especially the kids activities and in her darkest hours she is STILL actively working in the hearts of all of us, probably more so than she ever has. She is a constant reminder when life challenges come our way, and they will, its the inner strength, the hope, and the love that will shine through us and pull us safely to shore. Praying for Suzi for continued progress and strength for all of you during this journey.

    one year ago · Reply
  • Franc Cahalane
    Franc Cahalane

    Kaitlin thank you for sharing the updates on Suzi. She has the best family and friends taking care of her. She is always in my prayers.

    one year ago · Reply
  • Dawn Gosselin
    Dawn Gosselin

    She is making great progress. I enjoy spending time with her. Her weekly stories make me laugh. Her sense of humor has not changed a bit. Love to all of you guys for everything you do...

    one year ago · Reply
  • Elizabeth Therrien
    Elizabeth Therrien

    I continue praying for your Mom's healing, and for strength for all of you. God Bless!

    one year ago · Reply
  • Diane Myers
    Diane Myers

    Thank you so much for the update! You, your Mom and entire family continue to be in my thoughts and prayers. Suzy is one strong lady!

    one year ago · Reply
  • Robyn Lessard
    Robyn Lessard

    Your mom and your family are amazing! We will continue to keep you in our thoughts and prayers!

    one year ago · Reply
  • Jennifer Coyle
    Jennifer Coyle

    Good to hear. Keep working hard Suzi everyone’s praying for you.

    one year ago · Reply
  • Mary Woods
    Mary Woods

    Thanks Kaitlin for the update. It all sounds like great progress! You are doing a great job and we are praying for your mom & family every day ❤️ The Woods Family

    one year ago · Reply
  • Jenni Johnston
    Jenni Johnston

    Kaitlin, It sounds like you and your family are doing an amazing job. Keep up the hard a great work. Only update when you have the time, as your days and nights are so full. Jenni Johnston - a Pelham parent and friend

    one year ago · Reply