Gracie update

  Last week I took Gracie to see Dr. O'Reilly, the ENT at DuPont, concerning her ears. This visit was necessary because she didn't pass her hearing test several wks ago. If you remember from one of my earlier posts, I mentioned that the Dr. that performed the hearing test said she felt like things were developed inside the ear, but the reason she didn't pass the test was because of fluid in her ears. So the test last wk. was a follow-up visit to see if we should put tubes in her ears to drain the fluid build up. However, when Dr. O'Reilly looked in her ears last week he said- "She only has fluid in one ear."
  To which replied- "Well, we do have people praying for Gracie, so maybe that's why the fluid disappeared in her one ear."
  His response- "Yeah maybe that made a difference. Probably depends who you have praying though."
  Me- "What do you mean by that?"
  "Well", he said, "If I'd (meaning himself) be the one praying it probably wouldn't make a difference. Him (meaning God) & I aren't really on good terms right now."
  I said something like- "Oh! Well, you might want to work on that."
  And he replied, "Yeah, I've been trying."
  The conversation was lite and mostly said in a humorous, joking way, but basically he was saying that he doesn't have a relationship with God right now. I do hope that every encounter like that on our "Gracie Journey" can plant a seed in the lives of the people we come in contact with, and will spark an interest in them coming to know Jesus in a personal way.

  As for the next step w/ her ears- Dr. O'Reilly wants to see her again in a month and possibly redo the hearing test before going ahead with tubes. That means another trip to Lancaster in June, but this time we won't have to go to DuPont- we can get an appt. with this same Dr. at Dr. Morton's office in Strasburg.
  I also want to mention a little about Gracie's over all progress. She now has a therapist that comes out once a week for an hr. We work mostly with her on her vision. I can tell you this- Gracie can see to some extent. Even though her eyes don't always co-operate for her, she does have a certain way of holding her head and you can see that she is tracking things. The therapist put it this way on Wed. when she was here- "she has low vision, not no vision." We are grateful for this!! Even though we don't know exactly what or how much she sees, we do know that her world is not completely dark.
  And her motor skills- wow! she gets around. She entertains herself for long periods of time by being on the floor, standing on her feet with her butt in the air, her head on the floor and scooting around like that. She also gets herself in the crawling position, but she hasn't actually crawled yet. She is also working on the sitting position.
  Gracie is so lovable and cuddly- we love her dearly. Thank you for praying for Gracie and us!!

PS- "thank you" to my sister Sue for going with me to DuPont last wk.!!

Chocolate Lab Puppies

For Sale - Choc Lab Puppies

For what it's worth I decided to post this on my blog. :)

We have choc lab puppies for sale.

They're registered ACA- they're English choc labs.

Currently 7 wks old. Ready for good homes on June 1, 2014.

1st round of shots and wormed.

6 females

4 males

Asking $650

Many people say to advertise them on Greenfield Puppies but I was hoping to sell them w/o doing that:) :) so if you know of anyone looking for a puppy send them our way!!

570.363.2405

 

 

PS- I'll be posting a Gracie update soon...

She's strong

I'm posting this video for those of you who don't have Facebook. Hopefully you'll be able to watch it. This is the kind of stuff Gracie has been doing on the floor for a month already. She spends a lot of time exploring on the floor.

PAMPERED CHEF HAFT WISH LIST

PAMPERED CHEF HAFT WISH LIST

Sorry I should have explained this post for those of you that do not have FB...

I am hosting a Pampered Chef show to benefit the Haft kitchen. Any of these items can be ordered through me or my online party link. Or people can order items for themselves and the credits benefit the Haft.

Quantity for items are all (1) unless otherwise noted in parenthesis

#1088 – Professional Shears pg. 25 -- $26.50

#1755 – Chef’s Silicone Basting Brush pg. 42 -- $10.00

#2071 – Small Spreader pg. 54 -- $6.50

#1642 – All Purpose Spreader pg. 54 -- $6.00

#2622 – Mini Serving Spatula pg. 54 -- $6.50 (2)

#2626 – Lg. Serving Spatula pg. 54 -- $10.50

#2981 – Microfiber Towel pg. 59 -- $9.00 (2)

#1321 – Deep Dish Covered Baker pg. 36 -- $88.00

#3081 – Small Round Bowls pg. 46 -- $18.00 (2)

#3084 – Round Serving Bowls pg. 46 -- $18.00 (2)

#1678 – Spoon Rest pg. 17 -- $12.00

#2340 – Small Turner pg. 19 -- $5.50

#1182 - Egg Slicer pg 29 -- $13.00

#1054 – Chef’s Knife pg. 30 -- $79.00

#1055 – Bread Knife pg. 30 -- $69.00

A day at DuPont

  DuPont hospital is situated among the horse farms of Wilmington DE., or so it seemed to me as we sipped our coffee and made our way through the scenic route to get there. :) I had never been there before, and I was genuinely impressed with the facility and the service. I thought the valet parking was an added bonus.

  Yesterday was the day that we were scheduled to do a series of tests/ultrasounds on Gracie to be sure she didn't have any more of the conditions, that can be tied to the CHARGE syndrome, that we were not aware of. The letters in the word CHARGE stand for a number of body functions that can be affected by having the syndrome. C=coloboma (eyes), H=heart, A=atresia choanae (closed area in nasal passage) R=retardation of GROWTH or development (I did NOT say they are retarded :), it simply means their growth and development may be slow) G=genital abnormalities, E=ear abnormalities.

  We arrived at the hospital at 8:00 a.m. and made our way to the cardiology unit. We filled out the usual papers and shortly after were called into the Dr. office where they gave us a little hospital gown to put on Gracie. She cooperated for most of the things the nurse wanted to check- weight, length etc. and did well for the EKG, but she had an issue with the whole blood pressure procedure (cutest little blood pressure cuff ever). After this the Dr. ordered the ultrasound part of the appt. to be done. Dutch and I worked together to keep Gracie entertained and tried to keep her from grabbing the ultrasound technicians hand etc. All in all Gracie was fairly cooperative through the procedure. I didn't realize how much I was holding my breath about the outcome of this test until I left out a sigh of relief when the Dr. said- "Her heart looks great. It looks normal for a 5 month old. I see no complications relating to CHARGE syndrome". Praise the Lord!! I guess thinking of living here at the Haft and having to have Gracie go through any major or minor heart surgery seemed a little overwhelming to me. How would we juggle everything? So it was a big relief to know that she doesn't have any heart condition. The next appt. was to check her kidneys, not that that's one of the major things they find affecting CHARGE syndrome, but more because its something that in general can be affected by genetic disorders. But "Sue" our ultrasound tech assured us that she has two kidneys, and they're in the right place!! Another good report!! The last test was her ears. Now we were quite certain she could hear to some extent but were not sure how much etc. This test was a 2 hr. test where they put the little stickers on her- behind her ears, and on her forehead, and there are wires they connect to this and they do a computerized test of sound waves etc. (glad somebody understands that stuff and knows what they're doing, it was just a bunch of squiggly lines to me). We needed her to be still or sleep for this procedure to get a really good reading. I was hoping she would do just that, but babies can be unpredictable... praise the Lord she slept/nursed the whole way through. The outcome was this- the inner ear etc.is developed, she doesn't show signs of underdevelopment and that is great news. She does, however; show signs of her earing being somewhat impaired right now, but the tech was fairly sure that was because she has fluid laying in there that needs to be drained. Tubes inserted in her ears will most likely be something she will need in the near future. So, in other words, her hearing is probably muffled right now, but it doesn't look like permanent hearing loss. Oh and a bonus to this appt was that the Dr. that did this test was a Christian, and she shared a piece of her testimony and of how God had worked in her life. We invited her to come to the Haft, and she "you haven't seen the last of me". Those are the kind of things we are always looking for on our life journey and especially through the journey we are on with Gracie. God moments! Divine appointments!

  Thank you all for caring and praying. The texts etc. mean so much. Thank you. It was a good day!

She's a joy... Keep praying...

  Many people have heard about or read "Gracie's Story". Many people are praying for her and our family, and for that we are so grateful. Gracie is truly a joy at this stage of life. She loves her swing and she loves to be on the floor rolling all around from her belly to back, and back to belly. She has been doing this for several weeks already so it seems like she may be a little ahead for her age in that area. An area that I have noticed that she may be slightly lagging in developmentally is sitting. A simple prayer request is that her back muscles be strengthened so she's able to hold her weight and sit. Other areas that we are praying for Gracie and we invite you to join us are- that her body comes in complete alignment with the WORD of God, that her hearing will be excellent, her heart will have no complications, and we even pray that when they do the lab testing to officially diagnose her with CHARGE syndrome that they won't even find a mutated gene, but that her genes will be perfect in every way. The verse that God has put on my heart recently is that "HE is able to do exceedly, abundantly above all that we can ask or think"!!

 

We are always looking for the big and "little" things in Gracie's development. The other day she put her hand in front of her face and it truly looked like she was focusing on it and tracking it. These are all huge to a mama & daddy who have been told that their child may not be able to see. 

  We have to spend the better part of Tuesday April 29 at DuPont Hospital in Delaware doing some tests. We will be testing cardio (heart), audio (ears), and medical imaging. We realize that these tests could reveal complications that will require us to make major decisions, but as I mentioned we're praying that God heals and REVEALS things all along the journey. Pray for safe travels, divine appts, and cooperation from Gracie. 

He cares about the details-

  On the dresser in my bedroom is a piece of paper that says "PA Early Intervention" and it has a phone number on it. Dr. Williams gave it to me last week and said- "You will want to call them at some point. Maybe tomorrow, maybe next week, or maybe in a couple months."
  "Early Intervention" is a free program offered by the state. It offers therapists etc. who will come to your house and work with your special needs child. I wondered what kind of therapists we might find in the hills of Bradford Co.? Would it be someone I was comfortable with? Would I be happy with what he/she had to offer etc. So I was hesitant to make the call... processing that fact that someone would come to my house, sit on my floor or wherever and work with Gracie. I knew it would probably be a good thing for her, but did I really need to go through with it. You got to know me, I don't like appointments, not big on strict schedules and that type of thing. Having people come in and out of my house would be a big adjustment. So I hesitate. And pray about it.
  Enter Sunday night.
  I'm down at the barn, pulling leftovers out of the fridge to offer to the youth group that uses the barn every Sunday for a place to gather. I'm talking to one of the ladies, Lori is her name, she attends Living Hope Fellowship, the church we attend up here when we're not busy w/ a retreat or guests. She says, "Hey I read your blog about Gracie. And you really need to talk to Trishia Winehardt tonight, she's teaching the young adults in the lounge, she works for "Early Intervention" and has worked with kids w/ CHARGE syndrome."
  Me: "Really? Are you serious? Is this her region? Would she be our EI person?"
  Lori: "I'm not sure what area she covers, but you really need to connect with her. And from what I hear her co-workers are really great people too."
  So I stuck around until youth group was over. And I talked to Trishia. And I marvel at God and His cool ways!! As it turns out, this is in fact Trishia's region, and there is a really good chance that she would be one of Gracie's therapists. And while I don't know Trishia that well I feel really good about having her work with Gracie and getting to know her better myself. She seemed passionate about what she does. And she was so encouraging!! She said that the brain can be trained to make up for what the eye cannot see!! She gave me the phone number to call the Brad/Sull Co branch of Early Intervention directly, saving me from having to make unnecessary phones till I connect with the right region.
  I totally felt like this connection was a "God thing"- a confirmation to me to make that phone call. So thanks to all of you who are praying! God really does care about ALL the details!!