Madison's Miracle...
a work in progress
Madison Updates

June 6, 2009

My mother called today and gave me a reminder. She said that people still ask her about Madison and why I am not writing in the blog. I was actually surprised because I guess in my own little world it feels like people just move on with their own busy lives and we are left in our own daily life. But, once again I was proven wrong. I am so touched that people still remember, care and follow her journey. Hopefully this summer will be a time of new awakenings and I will have lots to blog about.

The end of the year ended for the kids and Madison graduated from her PPCD program. It was a very bittersweet day for all of us. Pictures will be posted today! Her teachers really feel that madison has made a lot of progress over the past 3 years and especially the past 6 months. We did get a "diagnosis" of seizures in madison, but I still am not 100% sure that is what they are. She was put on a very low dose of Neurontin and the doctor said it was so small, we probably wouldn't see any change. But, we have.....they are basically gone. The thing is, over the past 3 years, she has gone through what I like to call phases of different activity. She will do things that look like seizures for a few months and then just stop. I don't know if it's the neurons making their connections or not, but it seems to be a more positive thing. However, we are keeping her on the low dose of neurontin for now. Ultimately, I would like to get her off of it again but the neurologist is going to fight me on that.

Other than the seizures, Madison has been doing really well. Her level of awareness seems to be better and her trunk and head support are getting better. It's a slow process, but we are going in the right direction!

B+ for Madison!

April 27, 2009

The past couple of weeks have been busy ones. As you know Madison had been struggling with a stye for about 6 months. Well, last week we finally had surgery to remove it. She did so well!!! The last surgery Madison had was about 2 months after her accident. She was in an "open eyed coma" at that point and although I know she had to have woken up in pain, she did not cry coming out of anesthesia or in recovery at all. This surgery was so different! The pain from removing the stye was nothing big at all....in fact we didn't even have to give her Tylenol. But, even so she CRIED coming out of the anesthesia!!! This shows us how much more aware she is than before. Sometimes since the steps are so small and so slow, it's hard to remember where she came from and when something like this happens, it shows that there indeed has been progress! Praise God!
We are winding down to the end of the school year. Madison will graduate from her class this year and go on to another school next year. I wish she could stay with her teacher forever, but I know that's not possible. So, anyway....until next time B+ for Madison!!!

April 4, 2009

Yesterday, John took Madison to Houston to see the pediatric neuro ophthalmologist. I was really worried that this trip was going to end in disappointment like the other times. But, I had a lot of faith in this doctor. She has written a book on cortical visual impairment in children and visual impairments like Madison are her specialty. The visit went very well. The doctor was positive and knowledgeable. She explained that when all children are born, they all have the same cortical visual impairment as Madison. The difference is, babies develop the brain and connections very quickly and in a matter of months, they have full vision. However, in a brain injury circumstance like Madison's it is a much slower process. It takes 8-10 years to develop. The good news though, is that it DOES improve. I have had so many regular ophthalmologists say that she cannot see and never will. Well, the expert does not agree. She feels that Madison DOES see, although not as well as she did before her accident. She was very positive about the visual therapies we have been doing at the chiropractic neurologist and feels certain that if we continue and be patient, that her vision is going to continue to improve. She also wants us to find a visual therapist that we can get therapies from once a week. So, all in all it was a very positive experience.

On a side note, the doctor did say that if we continue to have problems with Madison's stye, she will take care of it surgically for us as well. So there you have it....a good report! B+ for Madison!!

March 26, 2009

Well, we made it through the 3rd anniversary of Madison's accident! John handles the pain so much better than I do. In a way I sometimes feel like he has more faith than me. But, I think he is just better and giving it up to God. I have faith, but the emotions are sometimes stronger. The serenity prayer is something I pray and I just wish God would change my heart and take away that worry. I had a few crying spells on the 22nd, but I am blessed with such wonderful friends. First of all, I want to thank everyone for all the emails and facebook messages of support. They mean so much to me. It's nice to know that people have not forgotten about my princess. As far as the actual 22nd, I have a core group of friends that took me to San Antonio for 2 days to get me away from thinking about things. They made the 22nd so much easier and I love them dearly.

Madison's stye has still not gone away and we have gone back to the eye doctor. She will be scheduled for surgery to remove the stye probably this next week. The thought of putting her to sleep scares me, but I know it will all be ok.

That's about it for the update. Thank you again everyone for the well wishes and the prayers. They are appreciated more than you will ever know! B+ for Madison!

March 19, 2009

I don't know how a month has gone by already! my daily life is so hectic that it seems like I just do an update and then the next thing I know, it's been a month. There hasn't really been anything huge to report, but Madison consistently is making small strides. Her eye movements are better and better, her head control is improving. She just overall is a happy little girl. She knows she is loved, even if she can't communicate that to us.

Monday, we go back to the eye doctor to HOPEFULLY get her stye taken care of. This is something we have been fighting for 3 months now. We've tried the warm compresses, antibiotics, ointments, etc and have not been able to get it to go away. So, Monday we are hoping the doctor will decide to take it out. The whole thing makes me nervous, but I'm sure having that stye is pretty bothersome to her.

Madison also continues to have these little episodes where she turns her head and starts crying. The Chiropractic neurologist here locally and the one in Amsterdam both do not feel they are seizures. They feel that something triggers it in the brain and makes her posture and she gets "stuck" in that posture. She then starts crying out which they feel is an emotional response to what is happening to her. I am still not sure myself what exactly it is, but they definitely don't follow the usual "rules" of seizures. Hopefully, this is just a phase that will pass like others she has had. This could be a good thing!

As you all know, we are coming up on the 3 year anniversary of Madison's accident. This is such a hard time for me and unfortunately I have been so moody and emotional just knowing the date is around the corner. As an ironic slap in the face, last night I walked into Starbucks and there was a big sign about "world water day" which is being celebrated on....you guessed it....March 22nd. I think my heart flipped inside of my chest. It's just ironic cruelty. ::sigh:: Please keep me in your thoughts and prayers that I will be able to find some peace with this date and continue to pray for Madison's full recovery! God is good! I want to thank all of the wonderful friends and family and complete strangers that show their love to our family on a daily basis. I know that God is hugging us through your arms and that makes me smile. I want to thank God also for the wonderful friends I have that love me unconditionally and the core group of friends that make my daily life a little more pleasant. Thank you for being the shoulder I need to cry on and the ear I need to listen. This 3rd anniversary will be a little easier thanks to you all. I love you!

B+

New pictures up

OK I uploaded about 8 months worth of pictures to Madison's website so check them out!!

February 16, 2009

Is it truly mid February?? I cannot believe how the weeks fly by. I apologize for being absent from this blog. I know I say it all the time, but I just don't even realize so much time has gone by in between. I need to put a sticky note up on my screen to remind myself to do it every week. LOL

Madison was pretty sick last week. She had the virus that seems to be going around all over South Texas right now. She had a fever for about 4 days and was just wiped out. Madison never naps....never! Well, the days she was sick, I kept her home from school and she would pass out for about 4 hours everyday. Poor baby, the sleep probably did her good. She is doing much better this week and people who see her keep commenting on her eyes. They all seem to think she is more aware. It's very hard for me to see, but even though I don't always see what others see, I still BELIEVE she is in there. I KNOW she understands and will be able to break through one of these days. We are not giving up!

Madison is growing well and is now almost 45 inches long! She keeps losing teeth and unfortunately because her gums are overgrown from seizure meds she was on, we don't know they are loose until they are out. We think she has swallowed about 3 teeth so far. ::sigh:: Currently, she has only one adult tooth on top so it looks pretty funny to see her. She's still beautiful though.

I guess there really isn't too much more to update on. We have another appointment with the eye specialist in Houston in April so we are awaiting that. The anniversary of her accident is also coming up, so I ask for prayers. Please pray that God will give me a sense of peace and help me through the coming weeks. The weeks leading up to her accident are always the hardest time of the year for me. Until next time...and I promise it won't be THAT long LOL....B+ for Madison!

December 31 - on to a new year

So, we got back home from Houston. The trip didn't turn out as I had expected. I had these daydreams that we would meet the new doctor and he would be so much nicer than the other ophthalmologists we had met and just fill us with good news. Well, it wasn't that he wasn't nice. The entire 5 minutes we saw him he was very nice. But, we got no answers. The resident working with the doctor spent the most time with us. They dilated Madison's eyes and did the normal "eye doctor" stuff. He then comes in and says "well there is no eye reason for the vision loss. It's a brain problem." He ignored the dumbfounded look on my face and continued: "She needs to see a neuro-ophthalmologist. Come back in 2 months to see Dr. Edmond who is a pediatric neuro-ophthalmologist." Umm....aren't YOU a neuro-ophthalmologist??? Can't YOU tell me the same thing???? We were referred to him, obviously by someone who didn't know there was a pediatric one in Houston as well. I tried to tactfully ask why he couldn't just do the tests since he is the same kind of doctor, but I stumbled over my words. All this.....a 6 hour trip with the kids to be told we have to come back??? So, with that we leave, but not before he charges me $25.00 to fill out a form for the school that took two minutes tops to complete.

When I got home, I went to the website for the doctor he is referring us to. I must say that I think this may be a good thing that he didn't see Madison! This new doctor looks sooo nice and her credentials are amazing. And get this.....she wrote a book on Cortical Visual impairement in children!!! This is what Madison has and if she wrote a book on it, she HAS to know her stuff right?? The other doctor actually said she can probably give us quite a bit of information just by looking at her MRI. I'm feeling very optomistic that we WILL have some answers in a few months.

Madison survived the trip fairly well. It was kind of hard to travel with her at times but nothing we couldn't handle. She's been crying a bit at night before she goes to sleep. It's something that started a couple months ago. She doesn't seem to be in pain and when I go in and start talking to her, she stops and seems to just listen. Seems like maybe she is more aware?? It's hard to say. She has not had huge strides this year and to focus on the past just makes it harder on me. So, for this reason I am choosing not to look back at 2008 but instead look forward to 2009 with hopeful anticipation. I got the following in email today and boy was this perfect timing!

Today is Wednesday, December 31, 2008

Joshua 5:11. And they did eat of the old corn of the land on the morrow after the Passover, unleavened cakes, and parched corn in the selfsame day. 12. And the manna ceased on the morrow after they had eaten of the old corn of the land; neither had the children of Israel manna any more; but they did eat of the fruit of the land of Canaan that year.

Thought for the Day: You Have Been Prepared To Be Blessed

Reflection for the Day: Why Not Anticipate A Breakthrough?

For forty years the children of Israel ate the manna which the Lord provided for them in the wilderness. They learned to trust Him for their provisions and to give thanks for what He provided. They knew, however, that they were being prepared to eat the fruit of Canaan. As they crossed the Jordan and celebrated the Passover, it was now time for their breakthrough. They were now ready to enjoy their blessing.

As God prepares you for a breakthrough, don't resent your time of preparation or accept the preparation time as forever. As you go through the challenging times, anticipate what God has for your future. Why not enter 2009 anticipating a breakthrough? You have been prepared to be blessed!

what else can I say that could top that? Amen!!! Happy New Year to all!

December 26

Merry Christmas to all from our family! I hope that everyone had a joyous and fulfilling Christmas! We had a great one ourselves. But, now we pack up and are heading to Houston. Monday, we are taking Madison to see a Neuro-Ophthalmologist in hopes that we will have a better understanding of what she is seeing and what the hopes are for her future in terms of eyesight. We decided to leave a few days early and make it a family trip to go to NASA and some museums. The boys are excited about our little road trip. Hopefully, Madison will be excited too even if she can't express that she is excited. So, pray for our safe travels and I hope to post with good news when we get back! B+ for Madison!!

November 27 - Thanksgiving

Since Madison's accident, the joy has been sucked out of holidays, birthdays, etc for me. But, recently I have gotten a sense of peace and this is the first Thanksgiving that didn't make me sad. Actually, I SHOULD have been sad because our van broke down and is in the shop so we are stuck at home instead of going to spend time with the family. But, that's ok....I made a ham and all the side dishes and we sat down at the table and went around to say what we were thankful for this year. We really have a lot to be thankful for. Here is a list just off the top of my head:

long hair that is fun to fix (because at the time of her accident, she didn't have much!)
wonderful nurses and provider
my WONDERFUL friends here locally and all over the country that love and care unconditionally for my family and are always just a phone call away.
reductions in medications
good health (for the most part) LOL
caring strangers

actually, the list will go on and on and on. I feel so blessed to be so loved by so many. Thank you to all those who STILL pray for Madison and our family daily and still check the website. It touches my heart to meet new people who confirm that Madison has NOT been forgotten.

Thank you God for blessing my family and thank you for keeping Madison here with us. I know that you are working on her and through her and know that good will come from all of this. I trust you, Lord and raise Madison up to you. Thank you for taking the burden from me!

I hope that everyone had a wonderful Thanksgiving. Always give thanks....everyday because you just never know when your life is going to change. My love to all....

Madison's Mommy...B+ for Madison!

November 17

I cannot believe how quickly these weeks are flying by. Things have been so hectic, but we are all doing well. Let's see....over the past few weeks Madison has really struggled with excess mucous and spasticity. I talked with the doctor about putting Madison on an allergy med and that has seemed to help. She still has congestion but she is not drowning in mucous as much anymore. Her tightness seems to be a bit worse. I have been struggling with whether or not to up her Baclofen to help combat this. Part of me feels that when she feels better, she will loosen up again, but it's been very hard to even do the cross crawl due to the tightness in her muscles. So, that is a decision I must make in the next week and a half.

Last week, Madison had her yearly check up with the orthopedic specialist to check her scoliosis. I thought the spinal xray looked worse, but the doctor thought that the spine itself looked about the same but the muscles looked a bit better. She does seem to have better trunk support and he said if she improves her trunk support, the spine could get better on its own. HOORAY Let's hope those muscles get better and better!

I am in the process of setting up a photo album on this server (which would keep everything on one website instead of using a seperate site) so i will be posting soon to let you know there are new pictures. Madison doesn't seem to smile as much, but she does seem to be more aware. Praise God....I know he is working on her! He has never left our sides! Thanks to all of you as well for never leaving our sides. Until next time...B+ for Madison!

October 21....special day

Six years ago today my life changed......of course at that time, I had no idea of the horrendous day that would change my life again, but my life changed because I went from being a mommy of two boys to a mommy of four children. I have been blessed. My prayers for a little girl were answered. Since I was a little girl myself, I always knew I wanted to be a mommy. And, with that dream, I knew that I wanted a little girl. I have always wanted a little girl. After having two boys, I thought that my dream of having a daughter would have to be forgotten but no.....God blessed me with a beautiful princess. We named her Madison Peyton Randolph. Such a beautiful name for a beautiful little girl.

I always thought that after having boys, that MY little girl would be a little sweet, quiet girl that would play quietly with dolls and love to read books. Instead, I was given a boy in girl's clothing! Madison had such personality. She could be rough and tumble with the boys. She would come in dirtier than her twin brother and definitely ruled the roost. But, at the same time, she loved pink, dolls, dresses and could be the cuddliest little girl around. I had the best of both words. A daughter full of life and the ying to her yang....her twin brother Jason who is awesome in his own right.

Nowadays of course our lives are very different. But, one thing has not changed. The amount of pride I have to be lucky enough to be the mommy of Madison Peyton Randolph is overwhelming. Words cannot express the love I have for my daughter. I love her with every ounce of my being and I will continue to devote my life to her and her recovery.

Baby girl, I love you so much!!! I am so happy that you are here to celebrate your 6th birthday with us. You are loved by so many and most importantly, God. He has not forgotten you and will continue to heal you. Happy Birthday sweet princess! Your 7th year is going to be one of many awakenings and I am so honored that I will be there to witness it.

October 7 - ups and downs

OK first of all, sorry for the delay....godaddy.com changed around their website and I could NOT find the blog to save my life! Now that I have found it, I'm hoping to be able to find it again. LOL Daddy updated last and it took him a while to find it and I asked him to find it for me tonight and he couldn't find it again. HA HA HA Anyway....I happened to stumble across it so here is the update:

Madison had been back to normal, but apparantly when you are on a steroid and get off of it, the body can relapse a bit. So, she had a very sudden onset of excess mucous again and we have been working very hard to keep her clear. I think she's about to get over the hump on that problem. She is also extremely constipated. It's something we have dealt with since her accident and the other night she just screamed out in pain and I really think it was from her bowels. We give her miralax and extra water and a special tea to help her go. never in my life did I think I'd be praying to clean up poop. ha ha The other thing we have noticed is that she seems to be a little tighter in her muscles again. Hopefully it's just because she's not real comfortable because she hasn't pooped and it will get better again

I am sick currently so it's been tough, but luckily we have had a nurse so that helps. until next time....B+ for Madison!

Feel Much Better

I just wanted everyone to know that the Princess is back to normal. I still have a few more days on the antibiotic, but I had a good weekend and am much better.

We have had a nurse in the evenings for a couple of weeks almost every day. It's really nice to have some help for Mommy and Daddy. I will still eat almost a whole jar of stage 2 baby food (if I like it.) at one time. Thanks for reading my blog.

P.M.

September 22 sickness update

We ended up taking Madison to the doctor today.  She actually was not looking too badly this morning, so we got her dressed for therapy and headed out.  We had only been there a while when her breathing got very labored and loud.  Her O2 saturations were in the 80's.  I had not taken the suction machine with us because she sounded good when we left and I thought it was all behind us.  So, we left and went home to suction her.  I did it in the car and left right from there to the doctor.  The doctor gave her a new antibiotic and added a 5 day course of steroids to clear her lungs.  If this, combined with the breathing treatments and chest percussion treatments do not work then we will have to admit her into the hospital.  I feel confident that we can get this taken care of at home and she is much more comfortable at home for sure.  Right now, it's late so she is peacefully sleeping, although her O2 sats are in the low 90s.  She may end up on oxygen again tonight.
 
Please continue praying for her sickness to go away and her overall healing!  B+ for Madison!



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Sept 21 - sickness :(

Madison has been fighting off a cold/respiratory infection for the past week. She has missed school and therapies due to fevers and so much crud in her chest that she has had to be on oxygen occassionally. It's so hard to see her sick because she gets so stiff when she is uncomfortable. And, when she is sick we cannot do her exercises because she fights it so much. I'm really hoping that this week we will see an improvement in how she is feeling. Please pray for her health....being sick seems to set her back so much.

This morning, in addition to being sick, I *think* she may have had a seizure. I say think because sometimes when she is waking up she doesn't look like herself until she fully wakes. But, this morning it was different. I went into her room to start to get her ready for church, and when I opened a drawer, she started to wake up. She turned her head up and to the right like she was trying to see behind her, but if I tried to straighten her head, she was stiff and wouldn't move her eyes forward. In addition to that, every few seconds she would kind of twitch. In her body, she would jump a little almost like you do when you have a hiccup. At the same time, in her head she would turn it to the side and back very quickly. This whole time her pupils seemed to be very large. Of course, the room was not very bright either. It lasted a few minutes and I'm still not sure if it was a seizure. It was unlike anything she had ever done before. We have not seen anything that looks like a seizure since taking her off the meds. We will watch her very closely to make sure nothing else like that happens. I really do not want Madison to be on seizure meds, but if it looks like she is having them, I have no choice. I will keep you all updated!

B+ for Madison

From Mommy...

Well, as you can see Princess Madison and her daddy have been updating the blog. I never meant to let it go but in all honesty, I have been having a really rough time dealing with things. John deals with things so much better than I do and he has a way of being able to take joy in the small accomplishments while I am still crying and focusing on missing what my life and what Madison used to be. While I know I am a good mommy and love Madison and all my kids more than life itself, I feel like such a failure that I cannot seem to put this entirely in God's hands and just believe 100% that she will get better. The day to day is so hard and seeing how big Madison is getting and how much time is passing, I sometimes feel like everyone else has just moved on with their lives and forgotten about Madison. Then, my mom calls and tells me how people still ask about Madison or I'll get an email and it makes me realize how people have not forgotten. I thank you all for that. It really touches my heart to know that Madison is still in all of your hearts.

It's hard to say how Madison is doing. Of course, it's hard to see such small changes when you see her everyday. The positives are we got her off her seizure medicine and lowered her anti-spasticy medicine. The negatives are that she seems to be tighter than she used to and sometimes she just seems so non-responsive. I really don't know how much if any she is seeing because I cannot get her to follow things consistently at all. I talk to her and ask her to look at me or show her something to look at and she just can't seem to do it. We will be making an appointment with a neuro-opthalmologist soon. Hopefully he will be able to tell us more in depth what is going on in that department.

The chiropractic neurologist continues to work with Madison but he did say that she is not progressing as he had hoped. It doesn't mean we are giving up. It's just that we expected to see more change in this first year of work with him. I think part of the problem is we should be doing the cross crawl pattern exercise every hour. But, due to not having nursing, she is not getting all she is supposed to. This is an area we need prayers! We are approved for 64 hours of nursing per week. We get 8. This is due to nurses not wanting to work the evening shift in home health. This is the shift we need though. Please pray that a nurse comes our way that is willing to work the evening shift and will give Madison what she deserves.

I am going to try to work on me and my depression but in the meantime Daddy is going to help with the blog so that a month doesn't go by in between updates. Thank you all so much for your prayers and support. On a side note, I had a dream the other day about Madison. In the dream, she was walking (like a toddler would...a little unsteady) holding my hand and she was pointing to her eye and saying "eye." Since her accident, I have never had a dream at all about Madison getting better. I don't know if this truly means something or is a coincidence but the joy I felt in the dream was amazing and when I woke up it felt so real. I can only hope and pray that I will someday get to have that for real.

Pirate time

My big brother, Evan, is turning 9 on September 16th, but we had his party on Saturday. Actually, instead if having a party, the whole family dressed up as pirates and went over to Port Isabel to ride the Black Dragon pirate ship.

...of course, I was a "Pirate Princess" for the night. And, even though I still have a bit of a cold, I had a good time watching all the action. Daddy even took me up on the upper deck to feel the sea breeze.

Mommy's friend Jenie and her daughter Isabelle came with us. After the pirate voyage, Mommy took us all to Chili's for desert. Daddy is going to try to load up some pictures soon, and I will let you know when they are up for viewing.

A Milestone to Report!

Guess what I did on Sunday everyone! I ate a whole jar of stage 2 baby food in one sitting. I've eaten half a jar before, but not a whole jar at once.

Thanks for praying for me and the family,

Love,

Princess Madison

Back to School

Okay everyone; I, Princess Madison, have decided to update my own blog.

Well, it was a little crazy at first, but we have now settled into the school routine again. On the first day of school, Matthew took a little too long getting ready, and he missed the bus. OOps!!! Mommy was going to take Jason and Evan to Palmer-Lakso Elementary so she did, and Daddy took Matthew to Los Cuates Middle School for his first day of 6th Grade. And, I stayed with Miss Kim to get ready for my day. Ever since then, Matthew rides the bus to school, and Daddy takes Jason and Evan and drops them off on his way to school.

The Princess has to go to therapy first, then to Brownsville to see Dr. Talemantes. Then I go to school every afternoon. I am in Miss Mimi's class again at Palmer-Lakso. Yeah!
Going back to school is fun except that being around other kids means I might catch a cold. Well, I did! I've been coughing and have some congestion too. But today is Saturday and Daddy has been rocking me in the rocking chair a lot!

Thanks for reading:

Princess Madison