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 1-6-10
Update!!! On Grace Hi Everyone! Another update to let you know that Grace
came off the ventilator today!!! She is much more comfortable.
Please continue
to pray that she is strong enough to cough up the rest of the crud that is still
in her lungs. Thanks so much for your prayers!
Cami Lundt |
Update 10-25-09
It’s been way too long since I updated. Life just continues to be so busy and
adventurous that I just don’t take the time to sit down and get this done. I
will try to get everyone caught up on the busy life of the Lundt family!
I left the last update at the end of Grace’s 9th month. The next few months of
Grace’s life were busy because we were trying to sell our house. My husband had
started a job down in San Antonio, TX. and our family couldn’t move until the
house was sold. Thankfully the Lord kept Grace quite healthy for those next few
months. We had our regular Dr. appointments, but not too many extras.
On April 10, 2008 we celebrated Grace’s first birthday!!! What a wonderful
celebration! Many family and friends were there to celebrate while Grace slept
through most of the party. It was another amazing day to treasure with our
little girl.
In May our house sold! I felt that many people would think we were crazy for
moving so far away from our wonderful support in Omaha of family and friends,
church and school. I knew however, that God would provide all that we needed in
Texas since it was His perfect plan that we go. He had brought us through so
much in the last year. How could we not trust Him for this?
May – Grace was 13 months old and she had her first laugh!!! It was a quiet
breathy laugh that was so adorable. Also throughout the summer, Grace loved
swimming! She kicks and is so happy.
15 months old – Grace started having worse seizures, arms out to the sides and
shaking. They really upset her and the rest of us also. The Dr. added Clonezepam
to her seizure medication list. In the next few months, Grace could not handle
all of her secretions. She was constantly having upper airway problems. We were
suctioning her non-stop. She also started having constant Urinary Tract
Infections. She would even start a new UTI while on medication for the first
one. Grace also was so sleepy and knocked out by the Clonezepam that she did not
cry or smile or show any emotions at all. After 2+ months on Clonezepam, we
finally received permission to go off it. I just felt that all these bad things
had started when we began that medication. Thankfully, Grace started handling
her secretions again, no more breathing problems. I was never so happy to see
Grace look sad as I was when she got off that medication. She started smiling
again and we got our little girl back!! What a blessing! Needless to say, I
don’t recommend Clonezepam.
18 months old – Grace shakes her rattle! She weighs in at 24lbs. and is 32in.
long. Grace has continued struggling with many UTI’s and so they have done more
testing. The Urologist discovered that Grace has a tethered spinal cord from
noticing her crooked little tushy crack. I thought it was very cute, and it
puzzles me why no other Dr. had ever mentioned that it could mean a problem was
there. She is refluxing from her bladder up to the kidneys. She has a neurogenic
bladder, and her kidney tissue is not good. They told us that she is headed for
kidney failure at some point, but cannot tell how much good kidney Grace has.
She is growing well at this point. The kidney specialist said Grace may have 5
years or she could surprise us and make it to her teens. It was very
discouraging news. After my tears and prayers, I just had to keep reminding
myself that God will not give me anything that I cannot handle with His help.
19 months old – Seizures getting worse again, so the Dr. added Zonegram to her
regular Keppra and Depocote. This seems to be a good combination.
20 months old – December 2008 – Grace had a terrible stomach virus with vomiting
and diarrhea this month. She gets dehydrated every time and was in the hospital
two times. We came home from our second visit on Christmas Eve. I was so
thankful to the ladies from church who helped get my Christmas shopping done
while we were in the hospital.
21 months old – The neurosurgeon recommends surgery for Grace’s tethered spinal
cord. The Urologist says the spinal cord is putting pressure on the bladder as
well as the kidneys, causing the damage to both. There is no guarantee that it
will make it better. The nerve damage may be too great, but we feel we need to
try to protect whatever good is left in the kidneys. She also has scoliosis, but
not too bad.
23 months old – The Dr. heard a heart murmur. Two days later the cardiologist
was explaining that Grace had a coarctation of the aorta, and also a small
leakage in her mitral valve. Because of these things, her blood pressure in her
arms was too high and in her legs was low. She had been getting too much blood
pumped to the upper parts of her body for the last two years. The high blood
pressure and the lack of blood flow would have definitely contributed to the
kidney problems Grace has. The cardiologist kept apologizing that it had not
been found sooner. Two weeks later we had the coarc fixed with a heart
procedure. It went very well.
April 10, 2009 - Happy Birthday Gracie! Two years old!! We had a fun little
family party. It was very evident that Grace was just totally enjoying having
the entire families focused attention! She loved her gifts, had a taste of her
Dairy Queen cake, and with brother Ethan’s help, got quite messy.
Summer of 2009 – We had planned on Grace’s tethered spinal cord surgery in June,
but had to reschedule over and over and over. It was scheduled for 4 different
dates. First Grace got C-Diff, then ear infections, UTI’s, and another bacterial
infection that they could not put a name on. Grace had a fever 16 days in July
and 8 out of the first 11 in August. She always had a fever on the 2 days before
surgery. We have been praying for God’s specific direction on the surgery, and
at this time will not reschedule. We will talk to a couple more Dr.’s, but for
now I know that God does not want this done. I do not understand why, but trust
in God’s plan. Possibly down the road we will rethink it.
August 20, 2009 – As for today, Grace is happy and healthy! She has been fever
free for a few days. She is now 27lbs. 7 oz. She adores her brothers and sister,
and they adore her. She enjoys being read to, played with, and cuddled with.
Grace is getting much stronger, rolling over both directions, and holding her
head up much better. She still loves to swim and go to baseball games, although
we have to be careful not to get her too overheated. She stays awake a good
portion of the time, and presently has her nights and days very mixed up again.
She is daddy’s little girl and mommy’s perfect companion. She is loved by
everyone and is so tough to handle all these Dr.’s visits and tests.
September, 2009 – I talked to the Surgeon about her tethered spinal cord. They
wanted to put her on a cancellation list. If they get a cancellation they will
call, and if Grace is healthy she will get the surgery. This is the perfect way
for me to not have to keep Grace healthy for a certain time. We can just live
our normal lives, and if God wants Grace to have the surgery, it will happen.
October, 2009 – The surgeon’s office called on Oct. 9 and wants to do surgery on
the 12. Grace has been healthy!! Her bloodwork looked good! The surgery went
Great! The surgeon reported that Grace’s filum was so taut, that it bounced
right up when it was cut. This indicated to her that there was a lot of pressure
there. Grace’s incision was about 2in. long. She continued to run a fever after
the surgery, but was discovered to have another UTI. Surprise, Surprise! She is
recovering well at home now! We are so very thankful that the surgery went so
well, and are anxious to see the improvements it may make in her life!
As for the Lundt family, we are moving once again!! Life is always exciting! New
Mexico here we come! Grace is a wonderful blessing to our family, and we are so
grateful to be having so much time with her! Thanks again to everyone for your
prayers! God is faithful and incredibly good!
Much love from the Lundt family – Cami, mom to Grace Noel Lundt,
2 ˝ years!!!
clundt@satx.rr.com
- - - - - -
 Update
1-15-08
Wow! I cannot believe that Grace is now 9 months old! I have a lot of
updates to give from the last 9 months. I will try to hit the highs and lows
so you can see how faithful God has been.
Month 1 - Starting weight was 6lbs. 12oz. Grace had come home after our two
day stay in the hospital. Grace came home on Thursday at 6lbs.2oz. By Friday
she was down to 5lbs.15oz. The nurse kept saying how weak Grace was and that
was why she was sleeping all the time. As she kept saying "weak", I felt
like my crowded house was closing in on me. She said to start supplementing
her with a bottle since my milk wasn't in yet and it was too hard for Grace
to get enough. She spoke of a feeding tube as a next step. I kept thinking
surely God didn't bring Grace home to die in the next days. The nurse left
me that day trying bottles. We tried 3 different bottles that just didn't
seem to be working for Grace. I was getting very frustrated and feeling very
helpless.
Thankfully the Lord brought my sister-in-law from Minneapolis about that
time. She is a speech pathologist, and I had no idea that she would have the
knowledge we needed. She came right in and felt around in Grace's mouth. She
knew the exact kind of bottle Grace needed. She and another sister-in-law
kept looking all evening until about 11:00 in the evening they came home
with the "Haberman" bottle that they had found at a hospital. It was very
similar to the "pigeon" bottle they were looking for. Grace took it
immediately and we all knew that God's hand had taken care of our fears.
Shortly after arriving home the bili-rubin lights came for her jaundice
and she was our little glow worm for over a week. Along with that also came
a hospice team and nurses every day checking her blood levels, weight, head
circumference, and sometimes her oxygen levels. Grace was a dusky blue
around the mouth for a couple months. We had the oxygen on hand but rarely
had to use it. It was a busy month with many family and friends wanting to
spend time with our precious miracle baby, sometimes very hard as the nurses
and others reminded us of her prognosis. May came with her 1 month birthday
party and a very Happy Mothers Day.
Month 2 - Weight - 7lbs.10oz. Grace started smiling in her sleep often. It
was so precious to see. Grace had a fever in the middle of the month and was
not eating very well. She lost some weight, but on the 5th day the fever
broke and she started gaining some back. She was much fussier this month and
we weren't sure why. A chaplain came to make hand molds with each of my kids
holding Grace's hands. They are very precious.
Month 3 - 9lbs at her 2 month check. Grace had her first out of town trip to
a Grandparents farm! She also had her first swim on Father's Day and didn't
like it. She started refluxing this month and also had an ear infection The
reflux was incredibly hard. She didn't spit up, but she sounded like she was
gargling and would not allow any food down her for hours. We started her on
Prevacid, but it didn't seem to be helping. Her weight had been up to 10lbs.
but was going down quickly.
Month 4 - 9lbs 9oz. Grace was not gaining weight back as quickly as she
needed to so on July 16 we had a NG feeding tube put in. She was home for 2
days and started having trouble breathing. She had spit up twice. The
hospice nurses thought maybe she was gaining weight too fast and I wasted
too much time on the phone with them trying to figure it out. Finally the
next day I had them listen to her on the phone and they said "You need to
get her in". So off we went to the Dr.'s office who proceeded to run Grace
and I across the hospital to the proper room where she was intubated. It was
incredibly scary watching them try to get her the oxygen she needed. We took
an ambulance over to the Children's Hospital where she was admitted to the
PICU. She had definitely aspirated. Thankfully in the next couple days when
they took Grace off the respirator she was breathing on her own and doing
better.
The time was very difficult in the hospital. I had a Dr. tell me that she
thought Grace was trying to go, but we needed to be ready to let her go.
While in the hospital they put in a NJ feeding tube and after 7 days we came
home. The NJ worked very well. It bypasses the stomach
and goes directly into the small intestines (jujunem).
Month 5 - 10lbs11oz. Grace was on oxygen still through much of this month
after her pneumonia, but eventually came off. She enjoyed many family
birthdays this month and we worked on getting back in the bedroom. Grace's
nights have always been terrible. She never opened her eyes so does not have
the light/dark stimulus to help her get them straight. We live on very
little sleep. Grace responds to talking, tickling, and kissing.
Month 6 - 12 lbs. Grace had her first surgery this month. We put in a GJ
feeding tube. She did great and went home the next day. About a week later
she started spitting up formula and they had to redo the procedure. The
balloon had slipped out. Home again for 3 days and back to the ER for a
clogged tube.
Month 7 - 12 lbs. 2oz. With that ER visit they checked her blood levels and
found that all of her counts were off. I had been giving her Tylenol and
pain medication since her surgery that was masking a high temp. Her white
blood cell count was high, along with her electrolyte count. They found her
sodium, potassium, and hemoglobin counts were all off. We finally got things
under control while trying to find the source. They sent us home and found
out later that she had mono.
Apparently my older daughter had mono a few weeks before and we didn't
know it. I realized that you tell the Dr. everything, because that is how
she figured out that she needed to test for mono. Again I was amazed that
God had put us in the hospital right where we needed to be with that clogged
tube at the perfect time. He continues to take care of Grace. About a week
after that Grace's tube clogged again, always with Tylenol. I took her in to
the ER after not being able to get it unclogged for 4 hours. While the ER
Dr. was trying to get it out we heard a pop. All of a sudden her tube was
out further than it had been. I told them I thought it wasn't right, so they
x-rayed it. The placement looked fine and we were sent home. Of course by
the next morning her tube was coming all the way out. I taped it down and
drove her to the Dr. We were quickly admitted and she went in for surgery
again to redo it. Yes, the balloon had broke. I was thankful in the end as
they put in another kind of GJ tube that is actually wider. We have not had
any clogging issues since.
Month 8 - 12lbs.8oz. This month turned out to be a much better month than
the last. Grace is gaining weight again. We had an MRI done to see what was
there in her eyes and also to see how her Dandy-Walker brain malformation
was progressing. Right before Thanksgiving we found out that yes her globes
were very small (Micro-opthalmia), but were amazed to hear that her brain
malformation was no longer there. Her brain looked normal!!!! We praised God
for yet another miracle. The neurologist later told me that Dandy-Walker
just does not go away. We saw it on that ultrasound and know that it was
there. God is so incredibly good! A Dr. looked into Grace's eyes this month
(very hard for a mom). He has no doubt that she has no possibility for
vision, which is fine with me. God has always given me a peace about that.
Fun highlights of this month is that Grace will turn her head now to give
a kiss when we ask for one. She also kicks when we say kick.
She loves her toy piano by her feet to kick and make the music start.
She also will put her head up when I say "head up". Blind children are
really slow to put their heads up since they don't have the visual, so I
feel she is doing really well!
Grace also started myoclonic jerks this month (a form of seizures).
I was hoping we could bypass those with her brain being better. The depocote
seemed to work great at the beginning.
Month 9 - 14lbs.2oz. Grace had diarrhea for 2 weeks this month. They could
not figure out the cause and she was losing weight, over a lb.
Thankfully on the day we had her dedicated in church it stopped. I believe
we should have her in front of the church weekly for everyone to pray for
her! Wouldn't that be great. In trying to figure out the diarrhea, they took
her off the depocote. She is back on it, but it is not controlling her
seizures as it had before. We are also presently getting ready to have some
shells put in her eye sockets (no surgery) to see if that will spur on the
growth of her facial bones.
We appreciate the prayers of so many of you and have been so blessed by
the support and encouragement of so many. God has been incredibly faithful
to carry us through the last 9 months and even the pregnancy before Grace's
birth. We treasure these precious days with Grace and are so very thankful
for every one we have had. God has her days numbered and we are doing are
best to give Him the praise and glory He deserves.
A favorite quote we think of often is: "Worry does not rid us of
tomorrows sorrow, it just robs us of today's joy."
Cami Ann Lundt
clundt@satx.rr.com
- - -
4-15-07
I wanted you to meet our little miracle baby. God is so good! Grace is 4
days old! She was born on April 10. She has not been on any machines or
tubes except for some bili lights for jaundice. She is home with our family
getting lots of love and attention. She is nursing and bottle feeding now.
She had an echocardiogram at the hospital and her heart looked really good.
We don't know how long we will have her, but everything looks good right now
and we are so very thankful. Cami Lundt
4-12-07
Cami and Grace are going home today ... and would appreciate your continued
prayers.
Grace's diagnosis remains the same and unsure. They are thankful for each
day with her. She is in God's hands.
Prayer requests:
* for Ethan, Eric & Megan - her loving siblings
* for Cami's blood pressure to be lowered and stabilized.
- - - -
We have known the diagnosis since right before Christmas 2006. God has been
very faithful to carry us through these last few months. I am married with 3
children ages 10,8, and 5. Grace is a very special part of our family.
Please pray for some time with her alive.
Due to my high blood pressure, we have to induce on Wed. April 11. I was
hoping for more time with Grace, so we're having a hard time realizing that
the day is coming so soon. I just keep reminding myself that this is not a
surprise to God. It is all part of His perfect plan. Cami
Cami Ann Lundt clundt@satx.rr.com
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