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!!

A diagnosis...

  We took Gracie to see Dr. Ladda at Hershey Medical Center on Monday. He looked her over from head to toe. He had a name for her "syndrome". Clinically she was diagnosed w/ CHARGE syndrome. But in reality Gracie hasn't changed from the baby we've been loving for the past 4 months. The funny thing is that my mind wanted to change the way I see her, but then I caught myself. ShaLyn asked me if this means Gracie is a "special needs" child. I responded that it does, BUT doesn't every child have "special needs"? No two children are alike, they're all special- they all have needs.
  "Well, mom, will she be normal"?
  "I don't know... what IS normal anyway"?? She will be "Gracie's normal" and what that looks like, remains to be seen. Of all the things that can be affected by having this syndrome the only thing we know that Gracie has is the coloboma (which is the part that affects her vision), the 7th nerve palsy (which affects her facial nerve- its what you see when she cries), and ears that look slightly different externally but as far as we know know they can hear. The fact that she is small and gains weight slowly, may or may not be a result of the syndrome.
  We will need to take Gracie to see several specialists over the next few months. And we are so grateful to have Dr. Katie Willaims to help us schedule and walk through all of that. As of now we know very little about what she can or cannot see. She squinted in the sunlight the other day and something so simple as that made this mama heart smile. That means she sees some light!!! We also notice how often she holds onto a blanket, or our clothes when we hold her... she "sees" with her hands. I love to hold her close to my face, she will put her hands on my face to feel it. Touch will be important to her learning about her world. Hearing will be important as well.
  As for how Dutch and I feel personally with it all- our hearts are at peace. We believe in healing, we believe in "inner" healing, we believe that ALL things work together for good to those who are called according to his purpose. We also know that there is power in a spoken word. We choose are words for Gracie's situation carefully. We are choosing words of life. We also realize that this journey isn't just about Gracie, it's for us- to teach us, stretch us, draw us. Personally it is teaching me to trust- to trust God, to trust my husband, to trust myself. Its teaching to me to love, to let go, and to live more fully. I'm learning to embrace pain all the while believing for miracles.....