When you least expect it HOPE reigns supreme!!!

It has been a loooong time since my last blog. I suppose I needed a break to focus on survival through the summer months as Makayla was in and out of hospital numerous times with various gtube infections and recurring throat infections. It was difficult and exhausting and really not worthy of blogging. However after what I consider an epic achievement in surviving summer we were greeted with a very pleasant September and the blessing of full day school!!!!!!!!!!!!!!!! Don't get me wrong people I love spending loads of quality time with my girlie but she was just as sick of me as I was of trying to find entertainment and endless amounts of energy to keep up with her needs!!

SOOOOO September 3rd the bus shows up and whisks her off to a regular school for the first time in her life. In previous years this was a stressful moment but this year it was a small cause for celebration, dancing and a massive sigh of relief!! Looking back over the last 6 and a half years I can recall numerous times when I pep talked myself into believing that all I had to do was make it to this moment!! Give me a challenge and I suppose this is where I thrive best! Through the trials of 6 years of health problems, doctors appointments, tests, more tests, and more tests I think I switched fully into survival mode which is I think exactly what I needed to do but this week.... HOPE reigns supreme!!

After 2 months of school where Makayla gets tons of hands on help, tons of new vitamins and supplements and med changes, and mostly tons of epic proportions of Makaylas sudden eagerness to learn, communicate, and walk we are experiencing gains in massive strides. Makyala took 39 steps independently in a row last week!! Here is a moment I say that I believe it was so worth it. I am a proud mama to say the least, and filled with joy in abundance watching the pride that covers Makaylas face!!! And at the sake of sounding cheesy... YOU GO GIRL!!!!!!!!!! If this is not a story of determination and inspiration I just don't know what is! Today I believe fully that all things are possible and faith should never be taken for granted!! Today is a great day so doing something great with it!

Finally an answer

Early December Makayla had a esophagus and stomach biopsy done. For those that follow Makaylas journey know that she has had many many tests done over her little 5 and half years and almost all have come back empty handed with answers. She has battled some sort of mysterious pain for a very very long time, perhaps even her whole life and last May was able to finally point to the area that was causing her so much distress which was her throat. She has been treated for esophageal spasm simply on a guess from her wonderful neurologist. However last spring the medication seemed to be losing its effect leaving Makayla in more distress than ever. So after much debate I persistence on my part with several of her specialists we decided to go ahead with the biopsy even though they felt the scope done in July looked normal to the surgeon.

The biopsy showed severe eosinpillic esophogitis meaning that her body was having a latent allergic response to things she was swallowing and the white blood cells were and are attacking the lining of her esophagus causing severe pain, difficulty swallowing, drooling, spasms and structural damage. The doctor said you could relate it asthma of the esophagus. Finally an answer to tell the doctors that no I am not just a crazy paranoid mother of a daughter who simply needs psychiatric medication. This disorder is rare about 1 in 10,000 and is not associated with any of Makaylas other disorders. So she was tested for 40 food allergies by having me puree them and then they were taped to her back and left there for 48 hours ( not a pleasant experience.) Turns out she is allergic to many of the things that she ate on a very regular basis. The list so far is green beans, Mango, peanuts, pineapple, asparagus, carrots, chicken, blueberries, fish, corn, bananas, and latex.

To help undue the damage and take out the inflammation she is now on steroids twice a day and is being fed a very large percentage of an amino acid based formula through her gtube.  We were told that this disorder is very difficult to treat but if the steroids work we could see a huge improvement in Makaylas demeanor and quality of life. Unfortunately the change to formula caused Makayla severe constipation that ended us up in Mcmaster Hospital for 6 days. 5 Enemas and 3 large doses of medication finally got things moving but through all this the poor girl spiked a high grade fever and gave us all a massive scare!!

Finally we are home and she is unclogged and we are slowly getting use to making formula 4 times a day and following her around with her pump! We are still holding our breath that all these massive changes will be worth it. IT comes however with a great sadness as Makayla loved to eat and I would say it was one of her greatest pleasures so to take that away has been another emotional journey that will probably last a long time if not for ever. This disorder is not like other allergies that often disappear after a few years, this one lasts forever. However on a positive note perhaps she will feel better than she has in a long time physically if not ever. Here's to hope!