In the past two days my little LB has been to see nuclear medicine to have radioactive potion (itsy bitsy trace amounts) put into her iv line so they could tag the red blood cells. Once they were tagged images were taken of all the red blood cells in her tummy with the hopes it would show an area where there was a cluster of the cells together. Even though it sounds a little crazy mad scientist it was a truly fascinating procedure to watch. Oh and the results were normal.
This past afternoon she was put under a general anaesthetic and had a colonoscopy. It actually went great and there were no complications. With the tiny bit they learned from this test, tomorrow they will do a different one. Barium will be put through my daughters NG tube and a series of x-rays will follow it through her tummy, again with the hopes that it might pick up on an area where the bleeding could have or is taking place.
For the most part, today her hemoglobin levels have been staying rather steady, however I just got a call from her nurse that it has dropped again. I guess we’ll see what the morning levels are. If they drop again then it means the bleed didn’t clot and a 4th transfusion will be given.
Neurologically, the mystery is slowly unfolding. As I said before the first EEG showed some abnormalities which is why the video EEG was done on Monday. Today I found out that the abnormality was a hypsarrhythmia EEG which is abnormal high waves and spikes on the graph. It is indicative of Infantile Spasms. It’s a very chaotic and disorganized brain wave behaviour with no recognizable pattern. Each case is individual so it’s difficult to make a prognosis. LB’s is a very mild form, but, it will still be treated with meds to prevent severe epilepsy in the future. The little princess will be followed closely by neurology and will have follow-up EEG’s to monitor how well the meds are working. An MRI will also be done in the next couple weeks and will give the docs a better idea of what’s going on in her precious little body.
As for myself – I’ve been a rock this entire time. After all – If I’m strong and keep positive and calm my daughter will pick up on it.
This was the case until I spoke with neurology today. The hubby and I always said we can deal with any physical obstacles that may come up, however I always hoped that neurologically our daughter would be like every other child. A child that grows up to live a ‘normal’ life. I always had this dream that she would go to university, travel the world, become the youngest female CEO of a huge corporation, get married, and have lots of little babies for me to spoil. (doesn’t even have to be in that order) The type of dream that so many parents take for granted every day. No matter what, some or all could be possible
We will never know for sure what the future will hold for our princess neurologically. Only time will tell.
All we can do is keep our love and our hope strong.
Hope sees the invisible, feels the intangible, and achieves the impossible
Facebook Page: Little Ladybug Hugs
Little Ladybug Hugs 
Our thoughts and prayers are with you and your family! Poor lil Amira! This blog is a great way to track her process and i definetly will. I’m also keeping Ray informed. You write beautifully! God chose you as parents for this lil girl for a good reason! Luv Tammy & Ray.
Thank you Tammy. It’s been pretty tough, but at the end of the day all I have to do is look into those sweet innocent eyes and I know it’s all worth it.
A friend directed me here as we had a similar rocky ride with our baby. We are in Toronto.
I am fuming about your ridiculous parking situation. How embarrassing for MAC. I thought they were big into Family Centred Care.
It certainly was frustrating. Even though we managed to solve our problem by weighing down the truck, I know there are others that don’t have that option. From what we’ve been told, the hospital is between a rock and a hard place because a separate company owns the lot. Who know maybe someone that works there might stumble upon my blog and push for a change. Wishful thinking.
I remember when my son was diagnosed with autism, I wanted the doctors to look into a crystal ball and tell me what the future held. I wanted to know if I would ever experience “empty nest syndrome”. I wanted to know about whether I had to worry about what would happen after I died. They couldn’t answer my questions. The thing is, the future is uncertain for all of our children, neuro-typical or not. I just have to always remind myself of that when I start tossing and turning at night!
That is so true Julie. I’ll try that out tonight in the hopes of a good nights sleep. 🙂
Thank you for all your support. My facebook page is at 28 people now. 🙂
Melissa, I’m an avid reader of your blog … it’s just hearbreaking what poor Amira has to go through at such a young age. Our thoughts and prayers are with you every step of the way. I pray for your vacation with Amira to come soon! You are such a brave and strong Mom. Amira is a strong little princess! All our Love xoxoxo
Thank you Steph, things are finally starting to look up. I’ve already begun to think of places to go on vacation to next year – Fly to England/Ireland or Turkey, OR drive to Texas. All of which involve seeing close friends and or family.