yes! im going to publish my answer cause some others have asked. isla was approved for two hours a day 5 days a week for an aid. the next step is waiting for her pediatrician to fill out paperwork and i have a list of about 30-40 nurse/aid companies to call and “interview” im hoping to get to about at least 10 a day starting tomorrow. this is going to be one of the most important parts of the process for me. to make sure we get someone in the house helping isla that has some experience with young kids and is well versed in islas abilities. tim and i are sitting down tonight to get our “interview” questions together. so, we are on the right track and moving forward with getting some help! :)
It’s 4 am and she’s still sleeping. She is passed out in the same position she was set down in. So she’s had a good 6 hours so far! I’m hoping for another 6 for her! (knock on wood)
Not “why me?” as in “why did this happen to me?” Cause that would be extremely stupid and selfish cause it didnt happen to me or wasn’t given to me. It was given to isla.
I ask “why me? Why do you trust me to raise her?”
As you all know the past few days/nights have been rough with isla and her sleep. Well tonight after her bath she had two of her biggest seizures she’s ever had. I was holding her in my arms and trying to hold her arms down as she threw herself every 45 seconds or so and all I wanted to do was breakdown and cry. Out of sheer exhaustion, confusion, and heartbreak. After her second one in two hours I was done. Not knowing what to pray anymore I kept repeated “lord please.” “lord help.” I guess those simple prayers were finally heard cause she went in daddy’s arms and bounced for a few minutes and was out. Total exhaustion took over her little body. My heart breaks for her. I hate this for her.
I know I was given her for a reason. I couldn’t imagine life without her, ever. I know I was chosen as her mom. Obviously God sees something in me I don’t. Why he trusted me with this precious little girl I’ll never know but I am sure glad.
I wish I was stronger. I wish that as soon as Tim said she was asleep I didn’t start to cry. I wish that as soon as tim laid her in her crib and I checked on her to see for my own eyes that she was out I didn’t go climb into my bed in the fetal position and have a good cry. I wish I was stronger.
Please lord let isla sleep all night. Isla needs prayers tonight. Please.
Where’d you go?
Islas seizure meds have been upped a little. She hasn’t slept well in five days. I think it’s due to the upped meds and her body trying to regulate and figure it out.
She got her stander last week . She’s barely used it. She hates her AFOs. Shes barely been in them this week. She threw up from overall discontent and exhaustion. She has thrown fits when taking her meds. She has thrown fits about eating. Not wanting to or really wanting to. She has thrown fits at the mention of her therapists names. She has thrown fits when she wanted to activate a toy but couldn’t figure out how to get her hand there. She has thrown a fit when her sister started crying. She has thrown a fit when she saw her AFOs sitting beside her. She has thrown a fit when the kindle battery wore out. She has thrown a fit when I set her down for 30 seconds so I could use the restroom. Well you get the idea…
Sleep has been little at the house. For everyone. Especially my husband tim. Thanks babe! So very freakin much! Love you. We are all so exhausted. Not thinking straight.
I wish I could say I knew what to do to make this latest “bout” go away. But I don’t. I wish I knew exactly what was causing it. I wish I knew the best way to calm her and her body down…. Above all I wish I could take this all away from her.
My little girl is Currently laying in mommy and daddy’s bed with three of her favorite blankies and Oxford, staring outside, listening to Darius ruckers “it won’t be like this for long” on repeat, and just had some brain relaxation meds. Hopefully this combo…plus mommy cuddles will put her into a good deep sleep.
But I wanna complain and act like a baby for minute.
Isla has a doctors appt. tomorrow. It’s just an eye appointment. But I do not like going to doctor appointments. I almost wanna use the words hate and despise… But I won’t cause that’s too negative. I drive 2-2 1/2 hours one way to each of Islas specialty appointments; neurology, neurosurgery, genetics, endocrinology, eye doctor, nutritionist, orthopedics, and Botox doc (another ortho)
But these very appointments keep my daughter on the right track. So I will always do it. I love her and want her to have the best life possible.
I just do not like sitting in those darn offices. I don’t like the stress of driving 4-5 hours with the girls. I don’t like packing bags for the day…
I’m done being a baby… I’ll suck it up cause I have to.
She wiggles and moves to get in a feeding position that she likes. Right now she is laying sideways on my belly butt up in the air and her face is completely face planted in my boob. Her left hand is wrapped around to my back. And she is now falling asleep like this…So comfy for me.
To wake up from sleeping all afternoon, scream and demand food, immediately get a boob to eat on, and then you get to belch in someone’s face and laugh about it. Must. Be. Nice.