Tuesday, April 6, 2010

A large update

**Note**
Some of you have asked where you can send donations to help assist in lowering Merikalyn's medical bills (and those of the future, since she will have frequent check-ups, MRIs, and prescriptions) besides PayPal. My mom (Cathy Turner) set up an account at a Texas bank called Amegy (Amegybank.com). You can donate to a fund set up under the name of Merikalyn Taylor McGee. No account number is needed. If you do not live in Texas (or, live in Texas but do not have an local Amegy branch), you can mail your donation to this address.

AMEGY BANK
P.O. BOX 27459, HOUSTON, TX 77227

Remember to write it to The Fund of Merikalyn Taylor McGee. I would recommend putting Cathy Turner/Merikalyn McGee in the FOR section, since my mother is a signer on the account.

Many thanks to all of you who have already contributed- we are so grateful for your generosity and kindness. And, we know some of you wish you could, but can't- and we understand that too. We have appreciated your prayers, cards, and well wishes. We couldn't have asked for better support during all of this!



I have not meant to keep anyone in suspense (although I know many of you have followed the updates on Merikalyn's fan page), but we received the "results" of the biopsy the Monday following my last post. (We've been home for a week now- it's hard to believe that two weeks ago we were in the hospital fearing for her life!)

Monday morning, the Neurologist came in and spoke with us. I knew it couldn't be too horrible of news (cancer, for example) as I doubt very much (knowing his personality) that he would have spoken to us about the results when we were half asleep and lounging around.

He said it is an inflammatory mass, meaning it isn't a tumor (and even better, it's not cancer). In all his time as a Neuro, he's only seen two other cases of it (also girls) and so he doesn't have much information on it.

However, he felt comfortable enough letting her go home, and so, several hours after we spoke to him, she was released and we eagerly headed for home sweet home.

But, back up a few steps. The doctor said he wanted to get a Multiple Sclerosis Specialist involved because what she has is similar to MS (MS is also an inflammation issue) but it attacks a different area of the brain. He is hoping to figure out more on this, but so far, it doesn't seem life threatening. We are pretty sure we know what caused it, but because the whole issue is very controversial, I'll save it for when I have more information on it.

One of his patients with this mass had to have surgery again to remove the rest of the mass, but we are hoping that Merikalyn will not have to undergo that again.

She is doing quite well, and we started homeschooling again this week. Much of the information returned (better than before), while some things we have to go back over- for example, she has to work on her 100's chart again because she has forgotten the order of some of the numbers (20, 30, 40, 50.. and so on... although once we tell her "20", she goes on perfectly until the next ten). We knew some things would have to be relearned or at least strengthened, while other things she would likely pick right back up.

It is nice to have an answer as to why she was behind in some things educationally speaking. Even though I've tried not to worry about whether she's on track with her friends (many of which are not home taught), I cannot help but compare.. and I knew in some things, she just didn't seem to be catching on. Now we know why, and I'm seeing that the main issue was that she was understanding some things but wasn't able to verbalize it "on demand".

She has been doing very well at home. She is not able to be as active as she was (no running and being wild and crazy outside), but she is still fairly active, imaginative, and "herself", which is great! Every now and then, she says she needs a break and rests on the couch or in her bedroom for a while. I'm thankful that she listens to her body's cues.

Saturday we worked on setting up an organizational system in her room since she had received many dolls and toys while in the hospital (thank you!). I knew things would become chaotic if we didn't have some place to put it all- and, she's like me- so she needs to be very very very organized or everything goes downhill quickly.


(Yes, the paintings are my own work.) The bookshelves were $15 each at Wal-mart. Hubby reinforced them with Gorilla Glue so they will, hopefully, last longer. The little baskets were in the seasonal Easter section- two for $2- and they work perfectly! This photo was taken before they were completely filled, which are they are now. :)

Yesterday she started complaining that her ear hurt- or more specifically, the incision that comes just above her right ear. It looks like it's just the skin/area drying, probably pulling the area taut as it heals, but I'm keeping an eye on it (and giving her Tylenol). Other than that, she hasn't had many complaints.

She has an appointment to see the Neuro again on the 12th, and I am eager to see if he has any NEW news. I certainly hope they won't have to go back in, and I hope it will simply just "go away", but for now, we will have to just keep an eye on it.

I am SO thankful that we homeschool because.. well, first of all, I was able to see these little changes that any other teacher may have not necessarily reported to us. I was able to give her Neurologist a complete run down of her behavior over the last 4 years (we believe this began a little over four years ago). And, now, after the surgery and as she recovers, I am able to again witness her behavior and report improvements or set backs as they arise.

I believe there would have been SO MUCH that I would have missed had she been spending 8 hours a day in an institutional schooling system.

But, because I homeschool- I know what I've taught her, very SPECIFICALLY what she should know, what she is succeeding in, and what she struggles with. This has proved to be valuable information during this time.

We have been so blessed by our friends and family (and strangers!) through all of this. Our church helped stock our pantry and fridge so we wouldn't have to worry about groceries when we got home. Sunday (Easter) was amazing as it was our first time back in church since all of this happened. It was so wonderful to receive so many hugs and well wishes. And just knowing that HUNDREDS, maybe even THOUSANDS of people were praying for our daughter (and the rest of us) was definitely uplifting!

Words cannot express how THANKFUL we are- and I feel like I can never say it enough. I am trying to write Thank You letters to everyone who sent her (and us) gifts- I hope I don't leave anyone out, although I am sure I will.. so I hope you will forgive me!

4 comments:

Pam said...

Great news. Beautiful art and bedroom. Praying for you...from a fellow homebirth mom and midwife, home schooler and Christian.

Arlene said...

Praise God for His goodness and for Merikalyn's healing. I am overjoyed to hear it isn't cancer, and that she's feeling better. I was thinking, you might ask the doctor if you can put neosporin on the incision if it's dry. It'll lubricate the area and also help with scarring. I continue to pray for complete healing and for that mass to just go away in the name of Jesus. Hoping to hear more good news in the coming days. God bless you all.

v辰原 said...

may the blessing be with you.........................................

Megan said...

Very cute room. I love that you did it yourself. We just redid B's room, too. Still half way through his art work, tho! Homeschooling is so nice to be in touch with our kids! I can't stand the thought of someone else knowing more about them than I do!! Glad she is doing well!!