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Friday, May 27, 2011

Project 52: Week 21: Playing

Well, first thing in the morning we are heading out of "The Promised Land" and making our way back up north to home . 

We have been staying in TLF on Lackland, and we got lucky and got a room right next to the hotel play ground.  It's a nice big huge one, with a nice big shade cover, fun sand to dig in, and swings.
The girls have spent hours out there, any chance they get.

Saturday, May 21, 2011

Family Update

I just realized the other day, that I have not done much blogging, other than my Projct 52 posts each week.  Facebook makes it easy to forget doing it, but at least most of our family and close friends are all on facebook.  But I know, not all of our family knows what is going on, as far as the medical issues that has caused us to go on this trip back down to San Antonio, TX.  I think most know why Geoff came had to come down, but I will touch base with that as well...

I think all of you know that Geoff has 100% hearing loss in his right ear, due to a tumor that was removed a few years ago on his auditory nerve.  Since then, he has a tried a couple of different hearing aids, with no sucess.  One option has always been a BAHA (bone anchored hearing aid).  This is not a regular hearing aid though, and the though of having it surgically placed, made it our last resort, when nothing else worked.  So we decided to go with it.  We all 4 drove down a few days ago.  We did the drive in 2 days, and the girls did AMAZING as usual.  We spent half the day on Thursday doing pre-op appts and preparing for his surgery.  Friday morning we had to be at the hospital at 8:30.  We ended up having to wait about 3 hours before he finally got called back.  He was back there a few hours, and then the surgeon finally came out and spoke with me when he was waking up.  The surgery was sucessful and took a little over an hour.  The purpose of this surgery was to drill into his skull and place a "post" which will hold the BAHA.  I was able to see him about an hour after his surgery.  He was feeling really sick and had a huge headache (to be expected).  His surgery was a same day surgery, so he was able to leave just a couple of hours afterwards.  We are now back at the hotel and he is still feeling pretty crappy.  They said the first 48 hours or so he will feel not so good, and then he should be feeling up to getting around some.  He has a follow up appt on Thursday where he will be checked over, and probably released for us to head home.  He will be on convelesent leave until June 3rd as of now.  As of right now, he will be probably flying back to Texas, in 8-12 weeks, when he should be all nice and healed up, and he will recieve the actual hearing aid, that will plug into the post that was implanted into his head.  He should start "hearing" again right away.

Next up, we have Jordy on Monday.  She will be seeing a developmental team here.  From the sounds of it, they will evualuate her in the morning, and then meet back up with us later that day and discuss they actions they think we should take with her.  The purpose of this is not for us to find out what is "wrong" with her. We WILL not medicate her.  We just feel she still has trouble when it comes to listening, following directions, getting alot with other kids, some speech issues, and still strong oral issues.  We simply want to know how to teach her.  We want to know how to be better parents to her, and help her learn to focus better. We do not want to change who she is.ever.  We were referred here, because it seems she does not qualify for any of the speical needs programs up in Minot (besides just 1 hour of speech thearpy a week).  So, I will post more on that when we find out more Monday hopefully.

The 2nd issue with Jordy...could possibly be more serious, and really scares us...alot.  A few nights ago, Jordy fell asleep in our bed, and when I went to move her to her bed, around 11pm...she started seriously convulsing, and her eyes rolled back into her head.  At first I didn't think a whole lot of it, until I told Geoff, and it clicked, that she may have had a seizure. I would not have even considered this, if she did not have a history of seizures in the NICU.  She didn't have any after she was discharged, but was followed by nuerologists for her first year, until she was finally in the clear.  I decided to take her to the DR a couple of days later, just to be sure.  It really concered the DR because she had the history of them, and then we found out something we had never heard of thought of before.  She may be having "Spacial Seizures) for the last 3 years or so.  Most of you know this as "Jordyland" as we all like to call it.  She completely spaces out and just seems gone...but happy. We never though tthis was a bad thing, but just her being Jordy.  The DR told us that this concerns her even more that she has been doing this her whole life. So basically now, we are taking her to a nuerologist in Bismarck, sometime after we get back from TX. 

Now Abby. I am pretty sure I blogged a while ago about her having headaches and stomach pains, and having trouble sleeping. Long story short, we took her to a gastro specialist in Fargo.  He diagnosed her with migraines and gave her meds to help reduce the instances of those.  Well we had a follow up with her Pediatrician in Minot.  We told her we didnt' like the side effects of her meds (making her sleepy, kinda lazy, not wanting to play as much). So she went ahead and ordered an MRI so we could try to confirm migraines.  So we go in for the results of her MRI, expecting just the regular "everything is normal, but we had to make sure" only to be hit with a big slap of scary news.  They ended up finding 2 abnormalities on her brain scan.  The first one was a cyst.  Right now they are pretty sure no action will need to be taken, but the location of the cyst is actually down in her brain, where surgery would be VERY risky, so we are hoping its the type that she can just live with, and get scanned every once in a while and make sure there are no changes.  The 2nd thing was the part of her brain stem that carries fluid is sort of tilted, which it should not be.  Right now, it is not causing any problems, but later on, could cause possible fluid build up.  So she said she wanted her to have a consult with a neurosurgeon...right away.  We told her we were coming down to TX and asked if we could get seen here.  Mind you, this was on Friday and we were leaving Tuesday.  She was able to talk to the surgeon personally and got him to squeeze us in while we are here (saving us a trip to Minneapolis in a few weeks as well).  She will be seeing him on Tuesday afternoon.  Again, we are hoping to find out some good news, and we will post updates when we know anything.

SOOOO, yeah.  Right now I just do not know how I feel. I guess overwhelmed is the best way to describe it.  Today, we made it through the first thing: Geoff's surgery.  So that was a huge relief, but I still have so much on my heart and mind right now, I do not feel much relief yet.   Ummm, 3 out of 4 members of our family are getting seen by specialists here because of the lack of any sort of speicality Drs in Minot.  We love Minot, but this is super frusturating to us.  We are thankful we were able to do this all in one trip, even though Tricare is completely stupid about how and what they will pay for (they do not give a crap that we saved them THOUSANDS OF DOLLARS by doing 1 trip, instead of 3 individual ones like we could have).  So of course, that just adds to stress that we should not have to be dealing with right now.

Friday, May 20, 2011

Project 52: Week 20: Forever

Or, as Jordy would say:
"Fo foeva???"
Abby got to surprise her best friend yesterday when she got off the bus.
These 2 sweet girls were eachothers first friends
Both right around 1 year old (thanks to myself and her mama!)
They spent almost 4 years seeing eachother at least a few times a week.
Then, the sucky part of the military happened, and we PCSed.
Both girls were heart broken.
They talk about eachother constantly...still calling eachother "BFF"
They didn't see eachother for 2 years, until yesterday when I captured this adorable moment when they first saw eachother. 

Friday, May 13, 2011

Project 52: Week 19: Flowers

A couple weeks ago at MOPS we had a wonderful meeting and we actually got to make flower arrangements.  We each go to take home a beautiful bouquet.  Sort of, a Mother's Day gift to ourselves :)

Friday, May 6, 2011

Project 52: Week 18: Miracles

These 2 girls.

I know, without a doubt, they were sent to me to teach me so many things.

First, to learn that God is in control. He knows His plan, and I have to listen.

They taught me patience...from day 1, of both of their lives. Living in a NICU can do that to a person.

They taught me endless, unconditional love. I thought I knew what it was, but until them, I really didn't.

Through them, God taught me to believe in miracles, if it's in HIS will. His will was to give me these 2 beautiful little girls, who both had very rough starts in life...but in the end, were worth every second.

And it was all part of His plan, to make me, the mom I am today, and these sweet girls, who they are.

(I am constantly still working on the patience thing!)

My miracle babies :)

Abby born 6 weeks early, 4lbs 6oz, brady-cardia: 6 weeks in the NICU

Jordyn, induced at 41 1/2 weeks 7lbs, 14oz, full living saving resuscitation needed: 2 weeks in the NICU

I just can not imagine my life without them. I think I would be bored out of my mind :D

Happy Mother's Day!