Thursday, October 29, 2015

W's... Wondering Waiting Worrying

Update on Malia October 2015

Malia was last hospitalized in June of this year. That was after a severe seizure. It is hard to explain the complex nature of her health if you haven't walked this path with us. A seizure disorder by itself would make things hard. Malia's complications come with a list of other diagnosis's 

  • ID= Intellectual Disabilities, cognitively age 4(ish).
  • Mild CP= Cerebral Palsy
  • OCD= Obsessive Compulsive Disorder
  • Baraitser-Winter Syndrome- This condition affects the development of many parts of the body specifically the face and BRAIN.
  • Irregular and malformation of the left frontal lobe (which may or may not be from the BWS).
  • Pre-puberty= License to drive me insane! (Hormone changes)
  • And more...
Since MG's hospitalization in June, a new medication was started. At first this medication seemed to have stopped the seizures however the concerning side effect was severe academic regression at school and home including some behavioral aggression. Her doctor increased the meds in hopes of just trying to balance her system. Things got worse including staring/fainting spells all last week. By Friday, she had 2 seizure and because of the amazing staff at her school in Shingle Springs (Buckeye Elementary) Malia was safe and in good hands. I was able to get there about 5 minutes prior to her next longer seizure. EMT's arrived quickly and Malia was rushed to Sutter 35 miles away. 
Malia was seen and released with yet another increase in meds. Her doctor was not availble that night. 

On our way home after being very quiet (Post seizure norm), she rolls down the window and yells... "JESUS THANK YOU FOR MY LIFE!" LOL. Tears of joy and sadness overcame me. Once again thinking "ok, Lord I get". 

Malia  had mild spells over the weekend but a lot of it was thinking that we had to give the increase in meds a chance to work. By Monday, she was showing some concerning signs at school again. Not responding to cues, glaring/staring out, left arm curling and spasm, pail complexion and some sweating at times. Her doctor wanted to see her in his office Tuesday morning, she hasn't been home since. 

Her neurologist is mostly concerned about what can be causing the seizures which is leading to fainting spells and or fainting spells that are leading to seizures (even while on meds). She is now undergoing a 24 hour a day video monitoring EEG to yet again catch a seizure or spell in action to see where and what to do next. As of this yesterday morning he had seen some mild spikes in her left frontal lobe (consistent with her BWS). We are making sure there isn't something more serious going on. This is a process that is long and mentally exhausting however the days are blessed by wonderful offers of help and visitors. My mom dropped everything to help me with Chris and the boys and we have enjoyed other help and visitors...

I have to admit, this has been one of the harder weeks. Spending moments WONDERING if 911 calls will be made, ER visits,  hospitalizations and maybe more invasive surgeries are in her future? WAITING for the next test, seizure, fainting spell, aggressive hitting, punching or emotional breakdown will come? WORRYING about what kids will think, people will say, will she mentally get worse, will I lose her? The thoughts exhaust me. When I am alone for brief moments while Lisa, Chris or my mom take her for walks... I stare at her empty bed fighting the lump in my throat and the precipitation from hitting my cheeks. Then she returns with a Pumpkin bag she made in the playroom or I stare as she smilingly asks, "Are YOU ok mom?" :) 

I can't help but think of others that were less fortunate. I have two friends that lost their sons in July and October. That's when I am reminded of the blessings. I get to hold my baby girl. I get to tell her I love her, I get to hear "I love you" back.  Please keep my friends & their families in your prayers.

I write this anxiously waiting for her doctor to make his rounds this morning. Did he see anything in the tests? Are we going home today? If so, what next? If not, how much longer are we here? Worry overcomes me till I glance up and see my mom doing a unique version of stretching/yoga with her and through my loud ear buds I hear relentless giggles. Again, I fight the tears. 

I need to wrap this up because as most of you know... I hate to write but it is very therapeutic. It's good for me :).

SHOUT OUT to my prayer warriors, you know who you are. I have been praying for you all because I cannot pray for Malia very much. 

HF friends, your support and checking in with me has been very appreciated (especially for mental well being) One day at a time right?

Lastly, THE COUGAR NATION, my boys have been worried but thanks to their school and football families they have been able to maintain some normalcy this week. Now... "BEAT MESA FRIDAY!" in the words of Malia, "GO COUGARS"