Wednesday, June 22, 2011

Two weeks down...already??

Our two weeks is almost over!  I can’t believe it is almost time to go home but we have learned lots of new things to try when we get home.  These two weeks have been absolutely wonderful for Madie.   It has been so beneficial to have all three therapists, her rehab doctor, dietician, a pediatrician and all kinds of equipment all in one place.  It gives everyone who comes in contact with Madie an opportunity to brainstorm on what is best for her.  What works for one patient may not work for Madie and what works for Madie may not work for another patient so it has been great to have the chance to try equipment here that we don’t have at home before buying it only to find out it will be of no use.   Her therapies are only 30 minutes each but she is exhausted by the time she is done with all three and I can tell she has been working hard.  I feel like once we are back at home we will be able to better manage Madie’s day and make it much more productive for her, and maybe a little less boring for her nurse Jenny.  Not that Madie gives any of us the opportunity to get bored, she is pretty demanding of your attention!   
Madie’s eating is going well.  We are transitioning her from 5 feeds a day to 4 feeds and she has been getting a food tray all three meals of the day.  Now, she isn’t actually scarfing it down but she is taking baby steps towards eating.  I tried ordering her “regular diet” trays with the hope that I could mash it into a Madie suitable texture but she thought it was HILARIOUS to spit foods all over my face.  So Patti, her ST, decided to try a pureed meal tray.  She is doing much, much better the pureed foods.  Tonight she probably ate the most I have seen since the accident.  I was so proud of her, mostly because it was a pork chop pureed to the consistency of buttercream icing.  I’m going to have to figure out how to puree foods to the same consistency that they are here.  No matter how hard I try my purees are still lumpy and she wants nothing to do with store bought baby food.  Looks like I’ll be spending some time in the kitchen making baked potato soup and whipped pork chops when I get home!
Another reason we are so happy to be going home Friday is that Saturday is Madie’s 2nd birthday!!!  I can barely think about it without my eyes filling with tears.  It is so hard to believe that we came so close to losing her 10 months ago and now here we are with a beautiful, sweet, happy, laughing and loving miracle.  I am overjoyed that we will be able to celebrate with our whole family in our home.  I was able to sing happy birthday without crying at her party but something tells me I won’t have the same luck at home.  Ha! 
I am so excited to get home and get back in our routine and start working with Madie on all the new things we have learned here at OCH.  It has been so encouraging to see the smiles and shock on everyone’s face when they see Madie.  There are several people here that will stop by the room because they say they just love to see Madie smile.  I totally agree with them and it makes my heart so happy.  God has truly blessed my family beyond measure.
I have a new prayer request for all of you who have been so faithful with your prayers for our family.  Here is Jaci’s story.  She has been our neighbor here at OCH and is an inspiration.  She is going through a traumatic life changing event and EVERY time I see her she has a beautiful, genuine smile on her face.  She is facing incredible medical odds but her family has faith that God is leading them on this journey and that Jaci will be one of those great miracle stories you here about all the time.  She is already showing progress that most patients don’t achieve for months and her accident was a little over two weeks ago.  Please keep Jaci, her family, doctors and friends in your prayers as they are much needed and well deserved! 
I’m off to bed because I have lots of packing to do tomorrow!  Please also pray that Madie and I have a safe trip back to Marshall on Friday.  Thank you all for your support and love while we have been here.
With greatest gratitude,
Kristin, Matt, Molly Michael and Miracle Madie

Friday, June 17, 2011

My Grouchy Diva

I've been sharing a bed with this snuggle bunny this week.  She doesn't stay this compact though, TRUST ME.  Sometimes it feels like she might be trying to see how much room she can take up.

We made it through the first week!  Well, almost Madie has OT and PT tomorrow morning and then she is off until Monday.  I have probably seen the biggest improvements in speech.  She is really interested in eating.  The dietician has changed her feeds to every 4 hours instead of every 3.  This gives her more time in between to actually feel hungry.  Soon we will start ordering her food trays and depending on how much she will eat, we can take away some of her formula for the next feed.  The trick is going to be finding something Madie will eat a lot of…besides ice cream and Cheetos.  She loves the loaded baked potato soup from the cafeteria and I’m with her.  It taste like delicious cheese, potato, bacon and cream all blended together with a dash of Heaven thrown in for an added bonus.  Definitely not something I would feed my children 5 nights in a row, but I’ve done just that for Madie.  I might have to drop my healthy food values a little until she really gets better at eating and then reintroduce them later but for right now she will still be getting 100% of her nutrition from her tube feeds at least for a few more days.
Madie’s occupational therapist, Megan, stated that her goal is to get Madie to a one year old level.  Megan has been using blocks and getting Madie to reach for and attempt to stack them as well as working on her fine motor skills with her hands.  Madie’s ataxia makes her movements very jerky especially when she is excited so simple tasks, like picking up a block, are much harder to accomplish. It is very clear that Madie’s brain understands what she WANTS to but lacks the capability to make a plan, which is referred to as motor planning.   Her OT also wanted to get a vision screen for Madie which we had done today.  We know that Madie can see and she tracks objects side to side and up and down.  Since some of Madie’s brain damage was to the area that controls vision we wanted to make sure she didn’t have any double vision or need glasses.  The eye doctor said she for sure does NOT need glasses but she wanted us to follow up with a pediatric ophthalmologist when we leave because she might have an intermittent strabismus in her left eye.  So basically, her eye muscles are not as strong on the left side as the right and when she tracks to the left her eye doesn’t move like the right side and she tends to want to turn her head.  The doctor didn’t notice it every time and more often than not Madie’s eye did what it was supposed to but early intervention is best to avoid a potential surgery in the future.  This all makes sense because Madie’s muscle tone has always been more intense on her left side since she had swelling on the right side of her brain and your eye movement is controlled by muscles.  So chances are this could require no action or maybe we’ll get Madie the cutest eye patch the world has ever seen to wear for a little bit to help strengthen the left eye. 
My days of going to PT with Madie are over.  In the past I am a major distraction and she acts like a grouchy diva if I try to sit in or participate in her therapies.  Since we have been here she has been all smiles while she works away and I cheer her on…until yesterday.  She screamed like someone was hurting her until I pick her up and then she smiles and lets out a big sigh!  So, starting tomorrow I’ll watch from the hallway so she will once again be a productive participant, and not a screaming distraction, in the therapy gym.  
Dr. Raji decided to try to go back up just a smidge on Madie’s muscle relaxer since she has grown so much recently.  Her hope is that with just a tiny bit more baclofen, Madie can better control some of her ataxia.  We should see beginning results from this by Monday and if it is too much then we can go back down on dose and try something else. 
 Tomorrow Matt and Molly Michael are coming to visit and Madie and I are so happy to get to see them!  Matt will be staying with Madie here at OCH and Molly Michael and I will be going to stay with one of my college roommates.  Then Sunday we will come back to OCH and celebrate father’s day with one of the world’s greatest dads!  Thank you for continue prayers for Madie and our family.  We are, as always, so thankful for all of the support and encouragement we receive from all of you.
With greatest gratitude,
Kristin, Matt, Molly Michael and Miracle Madie 

Tuesday, June 14, 2011

we're baaaaaaaackkkk

WE’RE BACK!  We made it back to Our Children’s House at Baylor yesterday around 10:00 and when we got here were told we would be sharing a room with another patient.  EEEEEK.  I politely let them know that I didn’t think that would work and they assured us that we would have our own room by today, and thank goodness, they kept their word.  So we are getting all settled into our new, private, comfy room. 
Everyone is, understandably, shocked when they see Madie.  She is a completely different little girl than she was when we left here in November.  She has also gained 6 pounds and probably grown just as many inches.  We have met with all of Madie’s therapists and she seems to really like all of them. Her OT and ST are new (to her) but her PT, Mary, is the same one we had when we were here the first time.  All of Madie’s therapies since we left OCH in November have taken place in our living room with very little distractions so I was a little concerned about how she would do in room full of kids all doing their own therapies.  Well, she LOVED it.  It made me so happy that she didn’t have a complete melt down.  I will do my best to get a list of goals that we are trying to achieve while we are here so that I can keep everyone better updated on her progress.  So far it has been mostly evaluations so I don’t have too much to report.
Speaking of things to report, I know I am horrible and never filled everyone in on Madie’s EEG.  I am not exaggerating when I say I have been busier than ever before.  Here is an excerpt from an update I posted on September 9, 2010….
Then came the neurologist with the EEG results.  The good news is that there are no seizures.  Then they let us know that her brain activity is still slow and that she has most likely has lost some brain tissue.  She said that Madie will probably always be at risks for seizures and will also be developmentally and cognitively delayed.   There is no way to tell right now how minor or major these impairments may be, especially only 2 weeks after her accident.   They mentioned that her brain really took a hit since it was without oxygen for an estimated 25 minutes.  We, of course, knew that these terrible things were possibilities but to hear someone tell them to you so bluntly is hard to swallow.  I asked the doctor what she thought Madie might be like compared to other kids her age, 5-6 years from now.  This was such a strange question coming from me because I am so focused on the now but I kind of just blurted it out.  The neurologist then said that there is no way of telling that and I just left it at that.  Matt and I gave our same speech about how we are going to stay positive and focused on Madie’s healing and we have faith that she will still be one of those miracle kids you hear about all the time. Then about 30 minutes after she left I just broke down.  I thought about Madie and that strawberry shortcake ball and everything else that she and our family has been robbed of in the midst of this accident.  Then all of a sudden I realized I’m listening to what SCIENCE says.  We have had numerous doctors tell us that brain is a crazy thing and there is NO WAY to predict what it will do.  I reminded myself that God is in control and then I read Psalm 139:13-16.  Everything that will happen in Madie’s life story was written before it takes place.  It isn’t like the neurologist said this is as good as it will get for Madie. They are just telling us where we are now and I am pretty sure they will be shocked when we come back in a few years and they see Miracle Madie and how far she has come.    It seems that most people I have talked to agree with me.

So, the EEG…it was completely normal, perfect and beautiful.  Long story short, what that means is that Madie’s brain activity is normal and she is no longer at risk for seizures.   After Dr Castro gave us the results, she then brought in the doctor who said that Madie would ALWAYS be at risk for seizures and would ALWAYS be on seizure medicine as long as she was alive.  She told us she was so very happy that she was wrong.  If only all of those doctors would have listened to Matt and I from the beginning when we said that we had faith that God was going to take care of Madie….
I have so much more that I want to talk about but I am so very sleepy and we have a busy morning.  Maybe, just maybe, Madie will take a long afternoon nap so I can tell you all about Madie’s 2nd birthday party. 
Please pray that Madie’s time spent here at OCH is productive and please also pray for all of the other children here. 
With greatest gratitude,
Kristin, Matt, Molly Michael and Madie