Sunday, February 20, 2011

Happy days are here again

And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him.  Colossians 2:16
I know I have missed a couple of weeks and I am sorry.  I really mean to update more often and I know that I would update a few times a week it would so much easier and probably take far less time than trying to stuff two weeks of Skinner family excitement into one post!  So I will do my best.  I actually am sitting all alone in my living room right now.  We went to church this morning and then Madie decided to skip her afternoon nap so she is already asleep.  Molly Michael and Matt are having dinner at Matt’s mom’s house tonight.  So, for a brief moment, it is just me, my laptop and a little Extreme Home Makeover on the TV in the background.  It has been on for approximately 4 minutes and I have cried 38 times. 
Madie has had a great couple of weeks.  We had a great visit with Dr. Semrin, our GI doctor at Children’s in Plano.  We explain to him Madie problems with vomiting over the past few weeks.  He listened intently to everything we have tried and all the problems we had encountered.  We had just changed her formula back to a completely broken down one just a few days before our appointment.  We had seen some improvements since the change but we weren’t sure if it was because Madie’s respiratory issues had started to clear up or if it was because of the formula change.  We all agree that Madie probably doesn’t need to be on this particular formula.  It is designed for children that have a severe milk protein allergy and other issues.  Madie had no issues with milk prior to her accident but this formula is definitely the easiest on her tummy.  So Dr. Semrin suggested we leave everything as is for now and return in a month.  Madie had a rough time on the ride back from Plano and got sick a couple of times and then seemed like she just didn’t feel well the next day.  I think that sitting in car seat to and from Dallas just isn’t the best thing for Madie’s muscles.  Hopefully we can take some time on our next trip to allow her a little time to stretch out.  We have seen big improvements with Madie’s tolerance of her tube feeds over the past few weeks so we are hopeful that we can get her a more concentrated formula after her next visit on March 3rd.
Last time I updated we were waiting on Madie’s follow up swallow study.  Thanks to all the snow and ice we had in Texas at the beginning of February, we JUST had the swallow study last Wednesday.  I am pleased to report that Madie did great!  She had just finished her feed, she was sleepy and the speech therapist who helps with the swallow study tried to hold her and all those things made for one grumpy Madie.  Madie doesn’t care for people in scrubs.  So if you are planning to try and be friends with her.  Wear something besides scrubs.  So, I managed to get a few bites in Madie’s mouth and while she wasn’t really cooperating, we were able to tell that there were definite improvements.  There was no aspiration.  So the speech therapist and the radiologist told us to give Madie whatever she would eat.  Well, now comes the tricky part.  Now we have to overcome Madie’s sensory aversions.  She doesn’t really like the way most things feel in her mouth.  Everything she picks up, she immediately brings it to her mouth and then makes an awful face.  She has gotten MUCH better though.  She will put her fingers in her mouth and seems ok with liquids and purees.  So now we will focus on getting Madie to eat things with texture and also using a sippy cup.  She seems very interested in the cup but does not have the coordination to suck.  I know that just like everything else, Madie will prove to us that she is a fighter and that she WILL eat and drink again!  Hopefully these things will happen sooner than later so we can get her off of this tube feed!!!!
In other Skinner family news, we are thinking of getting a puppy.  We have decided on a tiny toy poodle.  After all my research, we feel that will be the best match for our family.  I really think that Madie and Molly Michael will both benefit greatly from having a pet.  Matt, while not completely against getting a puppy, is the most nervous about our newest addition.  So I feel like that means the puppy will be most attached to him!  The breeder we have decided to go with has a litter of puppies due sometime around the beginning of March.  Due to their small size these sweet puppies usually don’t go to their new homes until around 10-12 weeks old.  So that means that we probably won’t have our new little girl until maybe the beginning of June.  I kind of feel like an expecting mom with all this time I have to prepare.  We are VERY excited, well I should probably say that Molly Michael and I are very excited.  I told Matt I couldn’t believe we would be hearing the pitter patter of puppy paws soon at our house, I pray that we’ll also hopefully be hearing the pitter patter of Madie’s feet as well.
We pray daily that God will continue to heal Madie.  We also thank God daily for all the improvements we see.  We know that God’s plan for Madie and our family is a great one and we trust that He will continue to support us.  Please remember to keep up with Charley Rae’s story.  We are so grateful for all of you who still pray for Madie and cheer for her on her road to recovery.  As always, please pray for her continued healing.    
With Greatest Gratitude,
Kristin, Matt, Molly Michael and Miracle Madie

Thursday, February 3, 2011

Enough already!

As soon as I pray, You answer me; You encourage me by giving me strength.
Psalm 138:3
Before I even get to an update on my family, I want to encourage everyone in Marshall to bundle up and make your way to Cypress Valley Bible Church at 5:30 this evening to attend the prayer vigil for Charley Rae Furrh.  Those of you not in Marshall, take just a moment at 5:30 to say a prayer for this sweet girl and her family.  Pray that her tiny little body will tolerate the dialysis, pray for her parents and other family members and most importantly pray that she finds a kidney donor SOON!  Continue to follow her story here and please leave a quick message for her and her parents.  I cannot explain how much it means to read encouraging words from so many people.  I still love getting new messages and I even go back and reread old messages, especially when times are tough!  It renews my strength to read those messages from the first few days after Madie’s accident and realize just how FAR we have come.  I know Ashley and Drew appreciate all of the support just as much as we do.  Also PLEASE go here to find out if you might be a potential match as a kidney donor. 
Madie is doing really well…for the most part.  She has had a tough couple of weeks with different illnesses.  Last week she had an ear infection that came out of nowhere.  The only reason I even knew it was infected is because she has tubes and I saw the drainage.  She didn’t even give us a warning fever.  We started her on antibiotics and got that cleared up before Matt left to go quail hunting on Friday.  Then poor Madie had a pretty good battle with constipation.  It was awful and I didn’t get much sleep on Friday night.  There was lots of crying and throwing up involved for poor Madie.  GiGi(Matt’s mom) was sweet enough to take Molly Michael on Saturday so she could have lots of attention and I could get some sleep on Saturday night.   Thank the good Lord for Mandy, and her mom Peggy, who came out Saturday and helped me clean out closets.  Mandy’s dad even came over and helped take away five years’ worth of junk for us.  She slept great Saturday night but was back to misery on Sunday.  Finally we got everything moving, HA, and all seemed well.  Monday was OK and then Tuesday Madie woke up with a cough.  When Madie throws up a lot, she tends to aspirate some which leads to lung issues.  So we headed to town and got a chest x-ray.  No pneumonia but her pediatrician went ahead and started her on antibiotics.  Our electricity went out Tuesday night so we had to pack up in the dark and head to GiGi’s house.  No fun with a sick baby, Molly Michael thought it was awesome to walk around with flash light though.  We came back home yesterday morning and Madie was obviously not feeling well but she slept really well last night.  Then just to keep us on our toes, she woke up with a fever and a lot more snot this morning.  So went back for another x-ray and another visit with our fantastic pediatrician, Dr. Turner.  Her lungs were still a little hazy but no pneumonia and not any worse than Tuesday.  We have added in a second antibiotic and hopefully we are now officially on the road to recovery.  Madie’s nurse Jenny has been a great help and I know she is more than ready to not smell like Madie’s vanilla vomit.  I really hope one day Madie gets furious with me for sharing her constipation issues with all of you!  PLEASE pray that Madie gets better quickly because we are heading to Plano on Tuesday to see our original GI doctor.  We are hoping to get some answers on Madie’s reoccurring vomiting issues.  I will update everyone after her appointment and let you know what we find out.
Now, time to brag on my sweet Molly Michael for just a minute.  She is such an amazing little 4 year old…most of the time, ha!  She talks to Madie a lot and sometimes says the sweetest things to her.  One night I was holding Madie and she had just fallen asleep.  I asked Molly Michael if she wanted to give her a kiss goodnight.  She did and then she said, “Madie, I wish you could walk again.”  I, of course, started crying.  Molly Michael wiped my tears and looked at my so sweetly and said, “dry up those tears Mommy.”  She was also home Monday night when a friend of ours came to the house to do a little speech therapy with Madie.  Molly Michael went to Madie’s room and got all of her speech stuff and told Summer that she ALWAYS gets the speech therapy stuff out.  That night Matt was lying down with her at bedtime she told him that when she grew up that she wanted to be a speech therapist like Ms. Summer so she could help Madie get better.  LOVE HER.  I am so proud of both my girls. I am proud of Madie for being such a strong fighter and proud of Molly Michael for being so compassionate and loving of her sister.  There are also about a million other reasons I am proud of them, but I am sure you all knew that!
Thanks for continue to pray for our family.  We are still amazed that so many people are still following Madie’s journey and we know that all of your prayers are still being answered because we see improvements in Madie every day.  Also please pray that this weather doesn’t knock out our electricity again or that it at least gives us enough time to go get a generator before it knocks out our electricity again. 
With Greatest Gratitude,
Kristin, Matt, Molly Michael and Madie           
Here is sweet Madie Sunday morning.  She is really sweet and happy even when she feels like poo because she can't poo.  :)

And here is "The Lip".  Madie gives "The Lip" to get anything she wants.  She is actually sad in this picture as you you can se from her tears, but we see "the Lip" turn to a smile in seconds most of the time!  It has taken months to get this on camera because usually as soon as you get the camera out she starts smiling.