March 26, 2006
Well it’s the
night before Madison’s first 2 treatments at Wisconsin Integrative Hyperbaric
Center. I’m so worried that because she’s been under the weather that they
won’t let us do it, that we will have to postpone it a few days. I’ve been so
excited to start that I will be very disappointed if we can’t. But yet in
another way I’m terrified to begin. What if this does not work for Madison?
I’m so afraid to get my hopes up. I’m afraid we’ll start and she’ll start
having a seizure or we’ll cause her more harm even though all the doctors tell
me it won’t hurt her. I just want her to have a more functional life. I want
her to be happy. I want to see her beautiful smile and hear her beautiful
laughter. I want to see her eyes have that beautiful light in them again. I
want her to give me a kiss and a hug and to know that I am hugging and kissing
her all the time. I want her to be able to play and learn and enjoy life. I
want her to know how very much that I love her. I will always love her no
matter what! My life is going to get VERY hectic and I’ve been praying to God
to give me the strength to get through this as it is for my precious little
girl. I also pray to not get too crabby. Madison and whatever functionality
we can get her back to will be well worth every second of my discomfort.
March 27, 2006
Treatment 1 & 2
Well, we left
the house at 6:30AM. Got up there and they checked Madison’s Vitals and
fitted her for her hood. We got in the chamber, got comfy and they shut the
door and started the dive. I had a total panic attack. I had to get out and
Gracie’s Grandpa had to go in there with Madison. I have NEVER felt like that
in my life. My heart was racing, things were going black, and my hands were
sweaty. I went into an empty chamber and sat with the door closed for about ½
an hour and was fine. So when the second dive came up. I got in, and had to
get right back out; the receptionist had to go in. The thought of that door
locking behind me for an hour just sends me into a tailspin. I’ve always been
claustrophobic but this was beyond anything I’ve ever experienced. I got an
anti Anxiety pill from my mom and am going to try it tomorrow. If it works
I’ll get a prescription to get me through this. As for Madison, She did
fine. No problems. When we got home we had a chiro. Appt. and then some
errands to run. She has a cough so I turned the shower on and steamed the
bathroom. I put her on the floor and started her exercises. All of a sudden
she lifts her right arm, I pull it down and she does it again, and again. She
hasn’t moved her right arm since October! She also tries to resist when I’m
exercising that arm. As I’m exercising that arm, I’m watching her left arm
and her face. She’s staring to the left and I notice she’s staring at my
bathrobe and her arm movements look like she’s attempting to grab it. So I
put my hand under her elbow for support and SHE GRABS THE ROBE! She does this
about 10 times. This shows cognitive thinking! Yay! I try to help her grab
it with her right arm but she didn’t do it, but she did move it up and to the
side again. Hope I can deal with tomorrow!
March 28,
2006
Dive 3 & 4
Woke up this
morning and started to get Missy Mad ready. I was not diligent last night and
she slept with her hand folded under. I was horrified. I picked it up and it
immediately swelled up and turned this bright red. We have Acupuncture before
we leave, so we’re leaving right from there. Got to Madison and they looked
at her hand and she has a blister the size of a pea on her hand? Where did
that come from? I took an anti-anxiety med ½ hour before going today. I
decided to have Gracie’s Grandpa come in with me. I made it through with only
a couple of panicky moments that he talked me through! Madison again did
wonderful, but the blister is growing in size! It’s now covering the whole
palm of her hand!!!! So I run some errands and come back. 2nd
dive I decide to do it alone. I had several more panicky moments, at one
point I had to call someone on the walkie talkie to talk to me so I could calm
down. It worked and I made it again. Afterwards the nurses and I decided I
had better have Madison’s hand looked at. My Pediatrician’s office is open
till 8 and I made it back to town in time to get in. The think it’s some sort
of infection and gave me Augmentin with strict instructions to have it looked
at again tomorrow. They want it to be getting better already by then. I gave
her first dose and have her arm elevated above her heart and hope that Helps.
March 29, 2006
Dive 5 & 6
Not much change
today. I am no longer anxious to go in the Chamber. Today both times Madison
was sleeping and I napped right along with her. The people took a pic. Of me
and Madison sleeping! Her blister popped and we covered it and put antibiotic
on it. Hope we don’t get an infection!
March 30, 2006
Dive 7 & 8
Madison’s hand
looks MUCH better today. I cut away the excess skin and have been putting
anti-biotic on and covering it. We got in the chamber right away; I talked to
Madison and exercised her as much as you can. I can now hold her with the
Bubble and not have a problem. When we got out they evaluated her eyes and
they are starting to react to light again, but it’s still sluggish. She’s
also focusing a bit better. Her ear canals are totally covered with wax we
need to go to an ENT to get the wax removed then she can have her hearing
evaluated. We do that April 12th. The 2nd dive of the
day and she started moving her right arm, then I turned her head to the right
and she turned it back to the left. Little changes but every little bit
helps! They are going to bump her up to a higher level on Monday because
she’s doing so well. We are having an article in our local paper tomorrow
telling our story and advertising our benefit we are having April 9th.
March 31, 2006
Dive 9 & 10
Madison did
fine. No real notable changes. Except she was very bright eyed. She was a
bit sluggish due to all the schedule changes.
April 1, 2006
Madison had a
good day. She had PT and she moved her right arm. When you touch her face
with her own hand she has a good reaction. When I did her Joint Compressions
and range of motion I also used a vibrating frog all over her body to
stimulate those neurons. She seems to try to focus on me but it is sporadic.
Still has the runs.
April 2, 2006
I took Madison
to my mom’s today. I laid her on the floor to change her diapers and my mom
was to Madison’s right talking to her and Madison turned her head to the right
and looked right at my mom. This is huge. Madison does not like her right
side at all! I am using the vibrator again and also rubbing her toys with
different textures on her today.
April 14, 2006
Dive 25
Haven’t kept
up, but wanted to today, we are now at Dive 25, the place is busy so most days
we are only getting one dive in, but hopefully that will improve soon as the
place is expanding and buying new chambers... Madison is holding her head up
better everyday; she’s also trying to find her center of gravity. She lets
you know when she’s unhappy or doesn’t want to do something. She focus’s
occasionally, it gets better daily. Her swallowing is still iffy but is
improving. Her gag reflex is now EXTREMELY strong. She smacks her tongue and
you can actually hear her swallowing, the more she does it the better it’ll
get. Hopefully in a month we can start trying foods! It’s a goal. The
therapists don’t get to see her as often so I can’t wait till Next Tuesday to
see what they think of her improvements. They have this week off due to
Easter.
June 9, 2006
So much has
happened since April that it’s hard to comprehend. Madison did 38 dives. The
last week I noticed that her tummy was distended. It went down but then back
up again. We ended up taking her to the hospital where we were admitted.
Madison is now in chronic liver failure. I was told she will die within the
year. I have found an option to help her but of course it costs money. Money
we do not have. Stem cell replacement therapy will save her life and I have
to come up with about $10,000.00. $8,000.00 for the therapy and $2,000 for
the trip to mexico. This combined with the Hyperbarics is supposed to stop
the failure and allow the liver to regenerate itself. I will do whatever is
necessary to get her there soon. I fear that if I don’t get her there within
the next couple of weeks that we will lose her. I cannot comprehend not
seeing my beautiful babies face daily. Just to know that I love her so much.
I’m working on options to come up with the money and I know that somewhere I
will do it. I truly believe that this is the path God is leading us to and I
have faith that somehow I will come up with this money.