Lily's MRI results

2 words -> Praise God!!!  Lily's MRI results were good, she is showing no signs 
of tumor growth and her midline shift continues to improve slowly.  Thank you 
ALL so much for your prayers and wonderful thoughts for Lily and our family.  
This is truly proof that prayer works!!!  God-willing she will continue to 
respond well to the chemo and all the rest of the upcoming MRIs will show no 
signs of the tumor reoccurring.  I must admit it was a little nerve-racking 
waiting for the test results but all your well wishes made the situation more 
bearable.  Thanks SO SO much for all the love and support!!!

Night and Day

Lily did so well through the MRI. She couldn't eat anything after 2am so Magnus 
gave Lily a bottle at 1:30 am and she wasn't able to eat until after the 
procedure which was supposed to be at 8am but they ended up taking her in at 
9:30 so she didn't get to eat until 10:30. 9 hours without eating and all I 
heard out of her was a whimper to let me know that she was hungry. Such a BIG 
difference between her and Sammy. When Sammy had his MRI done after he woke up 
from being under the anesthesia he started crying even though he was hoarse and 
groggy. They were given the same gown so I thought I would post the pics of them 
in the same hospital gown. ;-) By the way these were taken before the MRI was 
done. 

Changing perspectives

So when Lily's neurosurgeon was recommending Sammy get an MRI done to make sure 
he didn't have a brain tumor, I was thinking to myself "DEFINITELY! Even if 
insurance won't pay for it." But now that we actually got it done and we have 
just received the bill my whole perspective changed or at least the attitude of 
'at any cost' went right out the window. Even though insurance is paying for a 
large chunk of the procedure our share is still a pretty hefty sum. So when I go 
to pay the bill I will just have to recall my very first response of 'at any 
cost' and be thankful that Sammy is healthy and sacrifice a few pedicures, hair 
colorings and that new Gucci purse I've been wanting ;-) 
 
With all the hospital and specialist bills that we are receiving I often wonder 
how people without insurance handle having an illness or having a dependent with 
an illness. Hopefully Pres. Obama's new health care proposals will actually 
bring down the cost of health care. We'll just have to wait and see.

Please keep Lily in our prayers...

We have scheduled Lily's MRI for this coming Wednesday, September 16.  Please 
say a little prayer for her that the MRI goes well and that it still shows that 
her tumor hasn't grown back and if you have some spare prayers can you pray for 
God to send a little sense of calmness to me that I don't drive myself batty 
with worry and anxiety while waiting for her in the waiting room for her MRI to 
finish and also ask God to give me more patience as we wait for the results. 
 
I get a weekly Bible inspiration/reflection email and received the following 
today.  The topic was "We can trust in God!" and I am taking it as a sign... :-) 
 
 
    The question is not "Does God still heal people today?" but 
    rather, "Is it in God's will to heal in any particular case?" 
    That is where prayer and faith come in; we can trust in God! 
     
 
I am hoping and praying that my next email will be 'GREAT NEWS'. 
 
Hope you all have a great weekend!

Lily's first step

This Saturday, Lily took her first 2 steps by herself and without her walker! Oh 
happy day!!! I cannot wait for the day when I can just put her down and she'll 
be off and running. Especially since she is getting heavy to carry. :-) Last 
week, her physical therapist was saying that she wouldn't be surprised if she 
walked any day now and I was just shocked at how fast it is happening! Lily is 
truly amazing! You can't tell her she can't do something because she will do it. 
Actually I think this can pertain to alot of handicapped children - they truly 
are amazing at overcoming their adversities! I was watching 'Extreme Home 
Makeover' last night and the family had adopted a 6 year old triple-amputee and 
the stuff she was doing on the show was truly amazing! 

Appointments, appointments, appointments...

Lily had her OT evaluation yesterday and they are recommending her for twice a 
week for 6 months. OMG as if she doesn't already have enough appointments they 
want to add another and two a week!!! Because her trunk is weak and she isn't 
grasping or trying to grab things they have evaluated her at a one-month level 
for her motor skills. I am going to see if we can do the OT services here at 
Mission so I can take her on Tuesday and Thursday since I am working from home 
on those days. In the meantime they have stressed tummy time for her which 
should increase her trunk strength and hopefully everything else will be quicker 
to relearn. So between the appointments and sorting all the billing issues from 
the hospitals and specialists this has become a full time job and my leave of 
absence ends in 2 1/2 weeks. Eek!!!! I am sure things will fall into place, 
hopefully. Thank God Sammy's MRI didn't show anything so we don't have to see 
any specialists for him and Danika's eczema is healing so her allergist said he 
just wants to follow up in 4 months. So the only appointments I have to worry 
about for them is their well exams (knock on wood)! I am hoping to enroll Danika 
in ballet but we'll see if I can handle another scheduled thing to add to my 
calendar. These are the times I wish I could clone myself. 

Good news!!!

Sammy's doctor, Dr Cox, called Friday evening and the MRI results showed no 
tumors or bleeding YIPPEEEE!!!!  But the radiologist noticed that he had showed 
some immaturity of myelin development and he recommended another MRI in 6 
months.  Dr. Cox said that she didn't think it was anything to worry about as 
long as he was developing fine, she just wants us to monitor his development.  
Plus she said that she is not sure what the norm is since they usually do not do 
MRIs on healthy 4 month old infants.  He actually rolled over by himself 
yesterday so he seems to be developing normally.  I am hoping that he won't have 
to have another MRI done because he wasn't a happy camper with the whole fasting 
before the MRI and was very woozy from the Versed and anesthesia.  OK I am 
learning way too much about medical terms than I want to ;-) 
 
Lily's first physical therapy appointment went well.  The PT, Carolyn, gave us 
more exercises to do with her at home.  I didn't realize how strenuous it was 
for her, after 40 minutes she had had enough and started crying during the 
exercises but Carolyn wanted to push her a little more.  Good thing I'm not the 
therapist because I was all "I think she's done" when she started crying.  I 
just have to keep telling myself that this is good for her so she doesn't fall 
behind developmentally.  
 
Thanks again everyone for keeping the twins in your prayers!!!