Our Little Bear updates

Recent emails we sent.................
Email # 1

I know some of you know that our Bear (almost 3 yrs old) has recently had some tests for
Cystic Fibrosis and Celiac. We have been so encouraged by all your
prayers. He had two elevated sweat tests a couple weeks ago and we
were waiting for the Genetic test to come back. The GI doctor called
us to confirm that his genetic blood test came back positive for
Cystic Fibrosis. The GI doctor seemed to think that Bear does have
CF, but wants us to see a Pulmonologist to confirm this dx. Last week
we were told he might have Eosinophilic Esophagitis (I will call it
EE) due to several food allergies. We learned he has some new food
allergies too and also told this could elevate a sweat test. His
Celiac test did come back negative, but they do plan to do an
endoscopy to test for both Celiac and EE.
We go back to the GI this Friday morning and they will see all of our
children. Lincoln also has to see the Pulmonologist on Friday morning
as well. They will start him on food enzymes (Pancreatic enzymes)
called Zenpep that he has to take 3 times a day with his meals and
also with snacks. They also told us they may want to do a
bronchoscopy at the same time they do the endoscopy.
Patrick will be able to join us at both of these appts, which is a
blessing because work has been so busy.
We have many questions and I am sure have a lot to learn.
We are so thankful for your prayers.


Please take a minute to listen to one of our favorite songs. It has
spoken to us many times during some difficult times.

http://www.youtube.com/watch?v=Ype1xE0wzsg
Praise You in This Storm by Casting Crowns

Thank you to my best friend D for this scripture verse today

Psalm 46
God Is Our Fortress

1God is our(C) refuge and strength,
a very(D) present[b] help in(E) trouble.
2Therefore we will not fear(F) though the earth gives way,
though the mountains be moved into(G) the heart of the sea,
3though(H) its waters roar and foam,
though the mountains tremble at its swelling.

4There is(I) a river whose streams make glad(J) the city of God,
the holy(K) habitation of the Most High.
5(L) God is in the midst of her; she shall not be moved;
God will help her when morning dawns.
6(M) The nations rage, the kingdoms totter;
he(N) utters his voice, the earth(O) melts.
7(P) The LORD of hosts is with us;
the God of Jacob is our fortress.

8(Q) Come, behold the works of the LORD,
how he has brought desolations on the earth.
9(R) He makes wars cease to the end of the earth;
he(S) breaks the bow and shatters the spear;
(T) he burns the chariots with fire.
10(U) "Be still, and know that I am God.
(V) I will be exalted among the nations,
I will be exalted in the earth!"
11(W) The LORD of hosts is with us;
the God of Jacob is our fortress.

Email #2

We had a great visit with the Gastro and Pulmonologist on Friday. We
were at Children's most of the day. We were so impressed with Bear's Pulmonologist, despite him having a family emergency
and his office closing at noon, he spent 3 hours with us. I learned
that his wife is Bear's Physiatrist, (MD that is also a
physical therapist)
We also met with the GI and his nurse practitioner,
You might be wondering why the GI. He is the one who found
the Cystic Fibrosis in Bear and has followed all the kids for their
GI problems. We were told Bug (7 yrs) and I had Celiac disease 1.5 yrs.
ago. We followed a gluten free diet for awhile, and then I didn't
really know if Bug had it. We both tested positive for the Celiac
antibodies, but not the gene, and at that time we refused the scope.
They will be looking for any esophagus and small intestine damage from
food allergies and from gluten (Goose (9yrs), Minnie Mouse (5 yrs), and Bear (3 yrs)have the
food allergies). I decided to schedule my endoscopy too, on January
31st. The kids will also have sweat tests and genetic blood work on
December 21st.
Then on Jan. 3rd Bug and Bear will have an endoscopy and Lincoln
will also have a bronchoscopy to flush out his lungs and take a sample
of the tissue. Goose and Mouse will have theirs later in January
(I haven't gotten a date yet) They wanted to do all 4 on the same
day, but I think I would be a mess having 4 on the potty doing a bowel
prep the night before and then having 4 under anesthesia at once.
They are saying 98% chance of Bear having Cystic Fibrosis, but he
is pretty sure he does have it. They are waiting on a few more genetic
tests. The first ones came back positive for the CF gene, but there
are hundreds more. (they first found the gene that causes CF in 1989) He will also
have another sweat test on Dec. 21st as well. A normal persons sodium
chloride is 20 and his was 63 and 67. They started Bear on food
enzymes (Zenpep) with all meals, two inhalers (albuterol and a
steroid), Hypertonic saline in the nebulizer (salt solution) and chest
percussions half hour twice a day, and Zithromax (using it for
inflammation not as an antibiotic) on Monday, Wednesday, and Friday.
This was all very hard news to take. We had to deal with some
emotions. We have felt your prayers and so appreciate them all. We
have really appreciated all your calls, emails, texts, Facebook notes,
and for loving us through this difficult time. This is no mistake,
God knew Bear would have this diagnosis. We are thanking Him for
answered prayers. For so many months we didn't know what was wrong
and saw Dr. after Dr.

Much love and Blessings

Please take a few minutes and listen to the words on this song.
http://www.youtube.com/watch?v=81S-ZQsn8Kg I heard it on Sunday
morning and it was just what I needed to hear. Heather Williams has a
wonderful testimony on you tube as well that talks about why she wrote
this song.


Email #3

The kids were supposed to get sweat tests and blood work this morning,
but we had to cancel after Mouse (5 yrs) woke up with a tummy bug. We will
go in for blood work in the morning. The boys will have their
Endoscopy's on January 3rd and Bear will have an Endoscopy and
Bronchoscopy on January 5th. Goose, Bug, and Mouse will have
Sweat Tests on January 4th. I am relieved they will be having them
over Christmas break. We have decided not to have Mouse go through
the endoscopy due to her not having many problems. We just don't feel
it is necessary for her to get at this time. The boys will be getting
the scopes to check for microscopic damage from food allergies and
Celiac disease.
Daddy will be taking a intensive class for Seminary soon. We had made these plans ahead of the surgery dates. He was on a waiting list and was
called the week before knowing that Bear had this new diagnosis. I
am thankful for my in-laws coming to visit and help during this
time.
Bear is doing so well on his food enzymes and his breathing
treatments. We are amazed at how much better he is sleeping and
acting during the day. He still has many coughing episodes during his
chest percussions and throughout the day. This is a good thing! He
goes back to the Pulmonologist next week for a
re-check. I am going to ask them about getting him a vest (does the
same thing as I do for chest percussions) It is tiring us
out doing them everyday for 30 mins. twice a day.


Some wonderful God Stories:

A friend of a friend.................--Your friend and her son will always be in my prayers. Cystic
Fibrosis families are near and dear to my heart. It was 5 years ago
last month that our sweet daughter (7 yrs old) was diagnosed with an atypical case
of C.F. So much has changed for us since then, and as you know the
Lord is SO faithful and will carry your friend and her family through
this. We are so close to a cure. Praying praying praying, that she
will feel God's presence and be comforted. L

Hi L,
Thanks for your sweet words and comment. J chatted with me about
it, and wanted to know if you have blog links or anything I can send
her. I didn't know that was part of your Faith Journey... thanks for
sharing! Will be praying for you too.
Christmas Blessings
D

Hi D,
I wish I had some links I could refer to your friend, but
unfortunately, I don't. Our CF journey is unlike others in that it has
a happy ending--our Lord and Saviour, Jesus Christ, Healer, healed
our daughter of CF! It would take pages and pages to type all that the Lord
has done, but after 4 years of tests, treatments (including nebulizer,
vest, Enzyme pills etc) and so many dr.s appointments, her
pulmonologist called us August of last year to tell us that she was
undiagnosing our daughter with CF, which as you know in the medical field,
just doesn't happen. We had prayed for years and the Lord brought us
through so much. I want to give J hope that the Lord does chose to
heal sometimes and to NEVER stop praying. We pray for patients and CF
families everyday and we also support our local CF Foundation. The one
site that did help me was cysticfibrosis.com. It has a Forum section,
where you can go in and chat with other CF moms/families. I am sure
that if she went on a forum and asked for blogs she would get many
good recommendations. What is her son's name? I would like to pray for
him by name. How is he doing, and how is J doing with everything?
Merry Christmas :)
~L

HI L,
Thanks for sending all that.
PRAISE GOD is all I can say! I love it - He indeed is the HEALER.
What an exciting and wonderful Testimony you have and Delaney has -
knowing how the King of Kings has worked in her tiny life, already.
I sent your email to J and she was greatly encouraged. She said,
"I will hold onto her words." She might email ya, I don't know.
She seems to be doing well - she's a special Jesus Girl, near and dear
to my heart in so many ways. I already see the Great things God is
doing with this -and her husband is in Bible college to be a
Pastor.....
Her son's name is Bear.

Merry Christmas to you!
Blessings
D

Another Story..........
I was in local Pharmace near our new home in May (getting cold
medicine for the kids) The cashier and I were talking about sick kids,
allergies, etc.... and she mentioned her son has Cystic Fibrosis. He
is now 32 years old and doing well. She
started the first CF support group. I remember telling her
I would pray for her son. She was worried because he was using
chewing tobacco and he didn't seem to care about his health. I did
pray for her son.
Fast forward 6 months, Bear now has the diagnosis of CF. I
remembered this conversation and when I was at the Pharmacy the other
night (getting medicine and stocking stuffers) this women was my
cashier again. I hadn't seen her since that day in May. I asked her
about her son and she was surprised I remembered. I told her about
our son and his new diagnosis. She then gave me her phone number.
Please pray for and her son with CF. I hope to call her after
Christmas.

We hope you all have a wonderful Christmas! Much Love and Blessings


Therapy update.................
Our Little Bear will be 3 years old next week. My how time flies!! This means he will be aging out of his Therapy (Occupational, Physical, and Speech therapy sessions) He was just testing for all these services and was accepted into the local Preschool. He will receive OT, PT, and Speech 3 times a week while at Preschool. We are so thankful and excited for him to continue with these services.