Gabby Update – Short Term Memory Loss

GabbyJust when I thought it was getting better…

Raising a child with short term memory loss has daily struggles.  Most of these struggles I have grown to adapt towards.  Once Gabby had the Hemispherectomy her short term memory loss was extreme.  She would ask the same questions over and over and over.  To the point where you would hardly believe she couldn’t remember.  I remember distinctly the year she had her surgery the movie Alvin and The Chipmunks came out.  She loved that movie and although she could remember parts of what happened during the movie she would ask me daily what the Chipmunks names were.  She would say things like: “which one has the A on his shirt?” or “and what were their names again” and “was Alvin the one with glasses?“. This went on several times a day, daily for several weeks.

When we came home from the hospital I was prepared…. or at least I thought.  I tried my best to have the house ready by labeling all her dresser drawers with photos of what was in them.  For example her sock drawer had a picture of a sock, her dress-up drawer had a photo of a tiara and so on.  This helped her identify where to find things and where to put stuff back.  It worked.  I always knew if I told her to go do something as simple as go to her room and get her shoes, when she was half way down the hall I would holler out ‘don’t forget your shoes’ and a few moments later I would yell again ‘come on Gab, bring me your shoes’.  I just knew to do those things automatically otherwise she would forget and get distracted.  I could be waiting at the door for hours before she would remember to get her shoes because we were leaving.  Repeating myself just became routine in my home.  Within reason of course…

Over the past year things had been getting better.  Gabby has started learning again, remembering how to read and even quoting funny lines from movies.  It’s just amazing what you can train the other side of the brain to do! I have been so excited about the improvement that has been slowly taking place for the past two years.  It has taken time and although it wasn’t back to normal it was better.  The keyword in that last sentence is WAS.

Last month Gabby stayed the weekend at my parents house.  They were having some issues in their master bathroom and were in the process of replacing the toilet.  My mother set up a type of block to prevent anyone from using the toilet by standing a magazine rack in front of it and sitting the trash can on top of it.  Obvious things to make a person realize it was out of order.  When the girls got there my parents explained to them the problem and how they were only allowed to use the front bathroom.  The whole two days my mom had to constantly remind Gabby.  She couldn’t even remember which bathroom was the front one and right after asking my mother which one to use, she would walk all the way down the hall to the bathroom to just turn around and come back to the kitchen to ask again.  Mom said my poor child almost seemed lost in her home that she has been to countless number of times.  Lately Gabby has not only been forgetting things more often but she has just seemed confused a lot.

I think the hardest for me is not even being able to ask her about her day because she can’t remember what happened at school.  Having a casual conversation with her once she gets home is not easy.  If I ask too many questions she seems to feel even more confused and feels bad because she doesn’t have an answer.  Sometimes a person (whether it’s a stranger or someone we don’t see often) will ask her questions and if she doesn’t answer quickly they may ask again, she seems to act as if this even scares her a little.  I know she doesn’t understand why she can’t provide the answers people are looking for and I don’t even know if she realizes she has forgotten something.  All I do know is what was getting better has taken many steps back yet again.

Trying to stay positive and thankfully we go see the Neurologist very soon.  More tests to come…

djane

Reblog this post [with Zemanta]

16 Comments

  2. Thank you for sharing your life and how things are these days. It must be so hard and frustrating for you, but also for your daughter. I hope that the doctor will have some answers for you and you get some support from your friends and family. If I were in your neighborhood I’d drive to your house and give you a big hug!
    .-= Etsuko´s last blog ..My Sister’s Keeper =-.

    Reply

  3. It does take a lot of patience! We discovered my oldest son, Joey, has short term memory loss associated with Autism Spectrum Disorder. It doesn’t sound as if his case is nearly as severe as Gabby’s but it was (still is) difficult for us. Joey has trouble remembering his day, what he did at school, what was for lunch, games they played at recess but other things, like movies, tv shows and video games, he easily remembers. There seems to be no rhyme or reason to how his mind processes information. We think this has something to do with the Autistic way his brain works. He’s got other problems too but we take it day by day. Some days it’s great forward progress and others are huge setbacks. Right now we’re in the midst of a setback but it too shall pass! I simply thank God his ASD is not severe and he’s considered high functioning. We make adjustments as necessary to hopefully give him the tools he will need to be a productive independent adult.
    From one parent of a super special kid to another: Don’t loose faith and hope, things will once again get better!
    .-= Jenn´s last blog ..Mom Congress Needs YOU =-.

    Reply

  5. I hope things get better for ya’ll. Chevy didn’t even have part of his brain removed, but there is days he can’t remember things. We are having trouble with him learning his colors and numbers. One time he might know them and then the next time you ask him it’s like he’s never seen them before. Some days are better than others. Even thou he never had part of his brain removed, a fourth of his brain is dead from having to many seizures before they got them under controll. But I think the part that is dead has alot to do with his memory lost. I’m like you I can’t even ask how his day was cause he gets so frustrated when he can’t remember. So usually I let him come to me, I don’t know what else to do. Also he is having alot of trouble falling asleep. He goes to bed at 9 and if I’m lucky he’s asleep by midnight.

    Reply

  6. I can imagine this being a challenge for sure. Thanks for sharing it though, I bet it will help getting more updates out on your blog because you will find others who are in the same or similar situation and you all will gain support/advice/tips from each other! ((HUGS))
    .-= Brandy´s last blog ..Wordless Wednesday: Magazine Kids =-.

    Reply

  9. Thank you for all the amazing support you women are providing in these comments. You can’t even imagine the smile it has put on my face! We are still taking it one day at a time and reading your comments reminds me to stay positive and that is the reason I blog!

    Reply

  11. Oh how frustrating for her and you! I imagine taking the time to retrain your brain is significant. My sister’s fiance suffers from seizures…bad, seizures every month on a cycle. He suffers from ST memory loss too. It seems like you had a good work around in the beginning. I hope things get easier soon.
    .-= Janis @ Sneak Peek At Me´s last blog ..Rocky Balboa 1, Austin 0 =-.

    Reply

  13. Gosh, I wasn’t aware of these medical issues….I’ve been following for awhile but just never caught one of these.

    As many times as I have to get after my children over and over again, I can’t hardly imagine having this as a medical condition…. And, scary. Keep us posted. I am so interested in all the technology and science and medicine out now days to help remedy medical issues and disabilities.

    You are doing a fabulous job! Kudos!
    .-= farmer*swife/GlassHalfFulGal´s last blog ..For GARY RITH, and his potter blog =-.

    Reply

  15. I am sitting here looking blankly at the screen…wow what can I add. Gabby is lucky that you are able to be home with her and the other 2 children in your family. By your comments, you seem to have a lot of patience and concern for Gabby. May you find support from family and friends to continue to do what is right for Gabby and her future.

    Reply

  16. Hi.

    I googled short term memory loss and one of the hits happened to be your blog. I realize I am responding really late, but I thought I would send you my best wishes for your daughter and tell you about my experiences with short term memory loss.

    My son experienced fetal distress, and through lots of doctors appointments, tests, ups & downs, we were able to put some of the pieces of the puzzle together regarding his health. Among several issues; including mild cerebral palsy, dystonia in his right arm area, sleep apnea, mild seizure disorder, etc… he also has short term memory loss.

    Looking at him it would be difficult to point out what his issues are. He runs, plays soccer, is in his age appropriate grade level, loves music, and is totally and completely viewed as a normal teenager. As his mom, I see how hard he has to work to keep all of this going. We work very hard to make sure he gets to all of his classes. We have an extensive but simplistic notebook system for him at school. It maps out times, classes, teachers, books, etc… When he comes home he is usually exhausted due to the apnea and just being totally overwhelmed due to working harder than most to just remember what comes next. I never thought we would be at this point where he can be dropped off at school and navigate through the halls of a sometimes ferocious junior high school. We purchased him a special watch, one that has 12 different alarms on it, and one that I can put text into in order to remind him where to go and what to do.

    I want to tell you that you and your daughter will figure out a way to deal with this. there aren’t many people in my life know how much extra time I spend getting my son ready for the day. Emailing teachers for assignments. Emailing and talking with and reminding teachers to follow our 504 plan to help him succeed. Talking with guidance counselors to eliminate the unnecessary classes and only keeping what he needs to eventually graduate. Making sure I am double checking to see if I didn’t forget anything. Setting his watch daily (our Jr. High works on an A/B day – which means on A day he has 4 classes and on B day he has the other 4 classes. In all we have 8 different options of what his day can be like.) Reassuring him how wonderful his life is and how wonderful his life will be? Repeating everything I say several times, several times a day.

    I am thankful for my son. I have learned things I never thought I would need to know. I do wish you well.

    Michelle
    (late at night typing, forgive my errors!) 😉

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *