when words aren't enough...

i'm on my knees this morning asking you

...our Creator...

to AMAZE us.  

because you are amazing and can do amazing things.

let the earth quake Father and AMAZE

us as you move in bailey's life.  i am holding

on to hope for my dear friends and their

beautiful bailey...that you will move.

You are the Great Physician...

You deserve our highest praise

and i continue to have faith

and believe that you will AMAZE us.

**please continue to pray for matt and heather...this past week-end was extremely difficult...  several of you have asked what you can do for the mekkes family right now...we are working on some ideas-if you would like to take part...please drop me an email and i will be in touch with you.

i talked with heather last night..my heart just broke again, listening as she shared news about bailey. she is such an amazing mama..so centered on what is best for bailey. i kept waiting to hear her talk about getting some relief..and she did, but not for herself or matt..but, for bailey. and i know matt is in that same mindset. they are in this fight for their child's well-being and are doing every single thing one could imagine to make sure she has the care necessary for each day. the heavens are clapping for these two...

a p p o i n t m e n t s

there are many, many doctor's appointments..and many still to come.
tuesday, bailey was in feeding therapy with heather,
she had 2 seizures in a matter of 25 minutes.
bailey continues to struggle through these sessions.
but, they continue to go and are praying for positive results.

s e i z u r e s
she is having more seizures..and, they are harder to detect-
which must be so frightening. each episode physically wipes her out!
the doctor's have increased her medications in order to be preventative...
please pray that they will be able to prescribe the correct amount-
enough to stop her seizures, but will not cause her more pain.

p a i n
with each feeding, bailey continues to be in a lot of pain.
there are 3 or 4 really hard days of feeding to 1 good day...
this alone brings much sadness and ache,
as matt and heather can do so little to relieve her pain right now.
she is scheduled to see her pediactric neurologist in 2 weeks.

t e c h n o l o g y
matt and heather's internet has been giving them some trouble.
your emails and responses to this blog mean so much to them!
comcast is going to be fixing the problem...so, they will
be up and running again soon!

June 16

It has been such a long time since our last post and yet it seems like only yesturday. I have struggled to know what to write. This last month has held some of our darkest days, and also some of our brightest. Bailey's pain with feeds progressed to almost every one and was very extensive. We have tried a few different medications to help control the pain level and we feel like we have found something now that may be helping. We are so incredibly grateful that Bailey is more relaxed and comfortable. We still have hard days but have had a few good days lately. We are learning not to take the good days for granted, and continually praise God for them.

Life has been very busy with appointments lately. Bailey has feeding therapy twice a week for the next 12 weeks, and has also started her physical therapy, and occupational therapy with the Early On program. As of now, they have showed us different excercises to do with Bailey at home to help her progress, and to reach her potential. Please pray that Matt and I would have chunks of time during the day to do these different excercises with her.

We wanted to share some of our "bright" moments as well. Lexi is cooing a lot and always has a smile on her face - her middle name, JOY is so perfect for her. Bailey has also cooed a few times and I have seen her smile once, which has been such a gift. I continue to hold on to HOPE that we will have many more smiles and a lot more cooing.

In closing, I just wanted to share one statement with you that has been such a source of truth and comfort in the past few weeks. Jesus Christ is not my security against the storms of life, but He is my perfect security in the storms. He has never promised me an easy passage, only a safe landing.

Prime Time

Bailey has been increasingly uncomfortable each night from about eight o'clock until sometime in the night :) On a good night this sometime is around 11:00. On a bad night it is not :o By increasingly uncomfortable I mean screaming and crying for hours at a time and having traces of blood in her stomach. We are working with several different care providers on discovering what contributes to her discomfort. Possible culprits include medications she is on, milk allergies, something related to the placement of the feeding tube, and/or general colic. Because of a sugical procedure reflux is not a likely canidate for the problem. Bailey, like most two-month-olds, has not been cooperative in verbalizing what exactly the problem is ;)

Yes we have tried car rides (which sometimes helps), putting her in the car seat near or on the dryer, in the swing with various "white noise" and countless other things. Please remember us during the "prime time hours."

Early On

Bailey had her first visit with "Early On" Wednesday of this week. Early on is the early intervention program run through the intermediate school district for children from birth to age three who have disabilities or developmental delays. As a part of the assessment process specific goals related to development are established and then services are put in place to assist with helping Bailey to move towards these goals. The individualized plan is reviewed and modified periodically as her needs change. In the next month Bailey will have an in home evaluation from both a physical therapist and an occupational therapist to set more specific goals.

Vision

Bailey and Alexis both had their two month check ups and continue to grow. Bailey is now over 9 pounds. One of the significant concerns that the pediatrician has for Bailey is her vision. Because it appears abnormal she will be seeing a specialist in the next couple of months to perform a more comprehensive evaluation.

Feeding

Bailey had her swallow study and she does continue to aspirate. In a normal swallow as food reaches the back of the throat the airway is closed off to prevent liquids or food from entering the airway. When Bailey attempts to feed she does not adequately close off her airway to protect against ingested food. She is also a silent aspirator. We have all experienced things going "down the wrong pipe" and know that a coughing fit follows. As a silent aspirator Bailey does not have this protective cough response. Instead if she were fed orally at this time she would be at high risk for respiratory complications secondary to this aspiration such as pneumonia. One of the things that can be done to prevent this is thickening liquids so that they are less likely to "go down the wrong tube." Other strategies including how she is positioned during feeding can also help. She has been referred to feeding therapy and will start in the next couple of weeks. For now she will continue to need to be fed through the G-tube.