Monday, March 19, 2012

Still alive...I promise!

So I'm embarrassed to have gone this long with no update...I have been getting messages asking how Hannah is doing and I feel SO bad I sort of disappeared on everyone after declaring I'll share with you all our stem cell journey....Sorry please forgive me! Life is busy- too busy...I've been trying so hard to spend time with my baby's and really put my heart into my photography...I'm not worrying about anything except building and growing my skills. Whether I have a million clients or only 1- I want to love what I give them...Its so important to me and its not as easy as it sounds. So back to my #1...Hannah the beautiful, the special, the one and only Nunu....Well stem cells ARE going to change this world! They ARE! But today were simply testing and experimenting and there is SO much we don't know yet, I tell everyone expecting to PLEASE save that baby's cord blood- its something you can only get once and the future is endless with possibility's. So I've just recently been devastated by the news that Hannah's left hip went from perfect to totally out of socket a few weeks after receiving stem cells- are the two connected...Maybe?!? But I believe so...after the stem cells we began seeing changes....and it would be silly to live in a bubble and say we got stem cells and lived happily ever after. She will need surgery- I don't know how I'm going to be strong enough to go through this but I will because she is SO strong. Is this the only change , no there have been some beautiful ones as well, her vision, her as our doctor puts it "eye contact and facial recognition" is very strong, and her all around "alertness" to the world....she's become closer to us- she's listening harder, looking deeper, and really "with" us- that's priceless. So the question I can hear coming from the mothers out there like me....would I suggest going and getting stem cells today? - Honestly if you have a million dollars under your pillow then yes go for for it and well all pray for miracles but for those who don't I'd honestly say No...Not yet,someday I believe it will make miracles come true but not today...someday! I think the strongest therapy and best thing you can do for your baby is free- its including them in your lives, treating them with respect, and Loving the heck out of them!!!!!!

Monday, December 26, 2011

TOP 10 OF 2011

I can't believe how fast time flys by us sometimes, today I was going through this past year in my mind and realized its been such a huge year for us. I thought it would be fun to make a list of our top 10 of 2011 so here I go in no special order:

1) We took Hannah to California to see DrSteenblock where she recieved 8 stemcell injections

2) We bought and fell in love with our Kitty Rocky

3) I indulged myself in my photography and started a new business {}

4) Hannah got eagle eyes system

5) We said goodbye to Penrickton Hannahs old school and started real school in our district and love it!

6) Zuheir started school for the first time, no longer takes a paci, and sleeps in a big boy bed

7) Serena is in a new school, started 3rd grade, and really matured a lot this year

8) my beautiful nephew was born

9) Z had his first modeling gig and got signed with an agency

10) Were all healthy, strong and excited to see what 2012 brings.....

Sunday, December 4, 2011

Happy to be 9!

Serena turned 9 yesterday, I cant believe it, shes growing up way too fast. This year we decided to invite her Friends over for a pajama party...we had about 16 pre-teen girls and wow is all I can say girls will be girls.....they gossiped, snacked, fought, made up, fought, made up again, gossiped a little more.... and were too adorable with all there dance moves in the talent show we did:)  SERENA.. I love you more then you'll ever know, you have always been a strong, funny, gorgeous little girl and as much as I want you to freeze in time- I absolutely LOVE watching you grow up into this incredible amazing person- keep shinning little princess!!!
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eagle eyes!!!

So you may be asking what is eagle eyes and why is Miss beautiful Hannah smiling with wires taped to her face...well eagle eyes is basically a new technology where your eyes become the mouse on the computer, and Hannah is actually the very first person in Michigan to get an eagle eyes system:) I found out about this incredible system from another HIE mom and the second I read about it knew we needed this to be ours. I read this website and got in touch with a wonderful lady named Debbie Inkley who is the founder of Opportunity Foundation of America( ) which is located in Salt Lake City Utah. This is the only current distributor of the system and when talking with Debbie I asked how can we get this for Hannah and how soon we can make this happen, we set up accommodations and flight for a trainer and representative named Ron to bring us a system and about a month later here we are and she absolutely LOVES it!!! This is by far the most amazing thing we have done for Hannah - I cant even begin to explain how she lights up and belly laughs and responds to this system so far. Ron was so great and explained everything so well I have been doing it everyday so far and its not as hard as I thought to set up. The day we received our system and trained for hours we also had Hannah's teacher and speech therapist and 2 other therapist who have worked with Hannah come in and also learn more and see it for themselves and everyone was absolutely shocked and very impressed by this awesome amazing new system. I cant explain how beautiful it is to see her control the computer, to laugh, to smile, to simply light up its been very exciting and I cant wait to see what great things will come!

Tuesday, November 8, 2011

working Hard!

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Today Hannah started back at EuroPeds... I wasn't there for the most part because Zu can't control himself around all there toys and everything he touches needs to be sanitized sooooo we thought it best to wait outside. I did catch the last 15min and got to watch her end the morning with some walking in her gait trainer.The therapist commented on how well Hannah can hold herself up so that's fun....we'll be back with more updates and until then please keep Hannah bear in your prayers!

Wednesday, November 2, 2011

glimpses of magic

Today is a day I have been looking forward too and dreading all at the same time, I mentioned before our SC trip that we had extensive testing and reports on Hannah's "status" and today marks 2 mos post stem cells and 3-4mos is the time where things usually start happening. This afternoon we had an appointment with Hannah's Low vision specialist (DR Ference ) and I swear my heart was beating so loud I couldn't hear myself think let alone breath. So right away when she walked into the room Dr Ference mentioned Hannah's great improvement in her tone, specially in her hands/arms which has always been her tightest area.  Then she did the vision test and was blown away to say the least~ she even for the first time ever ***REDUCED*** Hannah's eyeglass prescription by half....this is HUGE! Hannah's right eye is amazing and in some pics you can tell she is looking dead at me with one eye while the other is a little "off"...her left is improving still just not as fast and the new glasses should fix this if not at our next apt we will discuss the eye patching route which we've done before and its no biggie.  A huge thing also is Hannah has always had a hard time with listening AND looking together- she would be looking and if you talked to her she would visually zone out or vice versa she would be listening and see something and tone you out, but in the past few Weeks not only is she doing both at once but now she uses them side by side- now if you talk to her she looks for you and if she sees you and you talk to her she responds with smiling etc.... Dr Ference is very passionate with the future of Stem cells and the power they hold, it hasn't been mastered yet and we definitely don't know the real potential they hold, I told Dr Ference at the end of my visit how much I LOVED DrSteenblock and his team and it was so legit, clean, and professional...she said the hospital down town also speak highly of him and recommend him to spinal cord patients. Today went really well and I'm SO excited to get her new glasses and start EuroPeds on Tuesday!!!

Monday, October 31, 2011

Happy Halloween

I hope everyone had a fun, safe, happy, silly Halloween~ we sure did~ for as long as I can remember this has always been one of my favorite times of year! This year BOTH girls went as Minnie Mouse and story behind this was Hannah was going as Minnie first and Serena wanted to buy a costume...I HATE store bought costumes and will never again waste my money on such junk, anyways I offered Serena money and said go as one of the two costumes you have from our Disney trip and she insisted on buying a candy corn tutu spell witch and she LOVED it, she tried it on over and over and talked about it none stop- but when it was time to actually wear it she totally flipped and wasn't happy in it- Halloween comes once a year and I don't care what my kids are as much as I want them happy and enjoying themselves. That brings us to Z, I went store to store looking for his costume and thought it was too adorable, he HATED it and actually said today"No mommy no superman" well my heart totally melted and needless to say he maybe wore his costume 30min the day before at a birthday party and that was it! We actually had beautiful weather today...NO rain...and Thank God NO snow! This year I took Hannah and Zuheir out Trick~or~Treating for there first time...they both loved it! Hannah loved the atmosphere of people and kids and getting pushed around in her stroller, and Z would rummage through his bag grab candy and toss the rest, I seriously think he ate 30 suckers today at least so I'm basically praying he still has teeth left in the morning! It was fun, I absolutely LOVE my neighborhood, ate WAY too much candy and now I'm just completely wiped out!!!

Monday, October 10, 2011

waiting for Magic

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Well here we are a little over a month post-stemcells and were doing well, We talked with Dr Steenblock today for a post 1 month check in and when I asked what happens now...he responded with now we wait for the magic to happen...this is the fun part! He was in our area last week holding a medical conference about stemcells, he is an amazingly passionate doctor and I am so happy that we chose him to gamble our time, money, and dreams with. For anyone thinking of stemcells I highly recomend speaking with him and seeing what he has to offer. Hannah is doing fantastic lately. Its still very early to see if any major changes will come, from Day one its been explained to me that umbilical cord blood cells take at least 3mos to really start "working" and showing off so to speak, it works like a pregnancy would in maturity and after about a year there sort of maxed out. My fingers are still crossed, my prayers are still flowing, and my baby is still in my arms:) We have seen a definite change in tone these past 2/3weeks, just look at the pic above she's taller-heavier- and feels creepishly looser. Is it a strong sign that the cells are in there doing something- it enough to prove it to be a success and I would recommend this to others- not yet. Dr Steenblock said this is a great time to start therapy's and that's perfect because we are due to start EuroPeds an amazing PT program again in 3weeks. I'm so excited at the thought of Hannah's little beautiful brain slowly making some healing and changes but also very cautious with my emotions. A real fear I have right now is getting my hopes up so high thinking of what may come tomorrow that I loose sight of the angel I have today.

Sunday, September 25, 2011

apples- cider- tantrums

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Today we took the kids to the apple orchard:) Not sure if I mentioned this but Fall is my FAVORITE time of year! It was fun... the picture in the upper left of the collage basically says it all, my life in a nut shell.... Serena has been amazing lately and really being sweet to her two siblings which makes me super happy! Hannah and Zuheir rode pony's while Serena played photographer with my big camera, we bought yummy donuts, went on a bumpy hay ride, drank fresh cider, and enjoyed the adorable petting farm. There was a moment where I cought some curious rude looks at my angel... how I handle people mostly depends on my mood but today I honestly felt sorry for them, how sad, from the bottom of my heart I just wanted to explain to them and make them understand that they could only in there wildest dreams wish and dream to have a child like Hannah, she's not a burden but a blessing and she is the light of our family- we wouldn't trade her for anything, and she belongs to US!

Monday, September 19, 2011

Fun Day and the 2's!

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Yesterday we had a really good day at Hannah's fun day!  Its was a beautiful day, Hannah ate a icecream sandwich, sat really well in her stroller, and although was super overwhelmed she was very adorably sweet:)  Serena found a huge bag and was going arts and craft crazy filling it with all kinds of things, had a lot of fun specially helping herself to all the free junk food! Z.....Oh Z were do I start....he's 2! He LOVED wrestling with these 2 other little boys in the moonwalk, he begged random people for there snacks and icecream, and when I turned for a second he actually crawled through the fence into the petting farms fence filled with pony's and all I heard was Serena scream and the person in charge grab Z hand - he then petted the horse and demanded a ride. He is the most outgoing, social, crazy mans man- he learns 10new things a day and there not good things most of the time there things more like how to unlock our front door, how to open a permanent marker..then he proceeded to color on my wood floors, how to unstrap his car seat, and of course speaking of cars how to open the car door- TG for child lock he is my 3'rd child and this is my first time using it! Every time I change him or even hold him there is a new scratch or bruise, he doesn't cry he cracks up when he gets hurt so I never know where its from which drives me nuts. The biggest problem/blessing because really I love and appreciate this wild crazy full of raw energy boy is he is jumping out of his crib- not in a nice smooth way in a suicidal going to get seriously hurt way...I ReAlLy don't want to go the bed route this soon but we'll see- for now please pray I don't go crazy! Also a little update on the bus~ they adjusted it to "normal" land and gave me 7:20am :) VERY very VERY happy no one had to get hurt....because anymore trouble and I was going to leave Z on there doorstep!

Friday, September 16, 2011

Best Decision I Never Made

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I have to say the night Hannah was born I truly thought she had passed or was going to shortly after birth, when I was put to sleep for the C-section I didn't know much about what was going on, I was horrified, the only thing I knew was that my beautiful daughter, a child I absolutely loved more then myself and not only wanted but prayed for had no heartbeat and would be born still. She was, and I was mentally trying to prepare myself for this reality as fast and as much as I could so that when I woke I wouldn't be overwhelmed so much by heartache that it would completely take over my mind and I was afraid I could lose myself. When I woke I began to cry and baby I thought was gone, and it wasn't until they wheeled my bed into a crammed NICU and I saw the most gorgeous beautiful baby that I realized she was still here on this earth with us. I always thought a baby would live or die never in my wildest dreams did I know there was so much in-between. It took me months to grasp what I was told, the first days and weeks I asked if she was going to make it and would always be told she is very sick and might have developmental delays. I couldn't wrap my head around anything, life was a scary blur and in the deepest part of my mind, so deep I wouldn't allow my heart to hear it but I didn't want her to survive if that would mean a lifetime of pain and sadness- a life of discrimination and despair. I loved her so much that I would beg for God to take her back if she was going to suffer...I  knew I could never watch her suffer. The first 2 years with Hannah were so hard, endless Doctor apts, therapist trying to teach me there techniques and giving me homework when I was  running on 2hrs sleep, my heart was broken, every time she was placed in a car she would throw up and drip sweat from screaming so hard, and every time we went to a restaurant I would have my food put in a to-go box and Serena and Wes would eat while I held screaming Hannah in the car. I was never given a choice as to if I wanted my dead baby brought back into this world, I was never asked what I felt about raising a child with serious special needs, I was placed into this and people say God had this life for her well that's hard to comprehend because WHY her...what did she do?- this may or may not be the case- but I don't think of God choosing my precious baby out of a hat and saying will be dealt these cards is why we are here today. I realized at Hannah's first birthday when I wasn't sure whether I was in mourning the day because its when her brain was injured and she was forever changed or if I was celebrating the life that was brought back that day. After much thought and serious deliberation it hit me, I could do whichever I chose...It was finally up to me- I had no choices of what happened and what was taken from us but I could chose and decide how I was going to accept this new life. I decided to celebrate...celebrate her, celebrate us, celebrate the miracle we were given. I was given a second chance to be Hannah's mom, she is injured and life is so very hard at times but for the most part its beautiful. This beautiful soul is a true angel, my world, my obsession and I -yes me....I get the glory of being this child's mother. The best decision I NEVER made was to give Hannah a chance at this life, I always tell people I am so happy I wasn't given the choice.

Friday, September 9, 2011

cRaZy WeEk

 Yea the kids FINALLY started school!!! Serena is a big 3rd grader~ her school is amazing this is her 4th year there and were very happy with it so far.... they moved to a brand new building this year and its awesome! For some reason both girls had the worst hair day on there first day it was so funny! Hannah is starting a whole new chapter in her life and that's real school, kindergarten, were very excited to see how things go. I haven't fully pulled her out of our old program just in case this is a bad idea I don't want to have to re-enroll her in the old program and get on there 1yr wait list so for now this is a trail to see where things go. I LOVE Hannahs new teacher, she is my dream teacher, and her school isn't so bad either although its a fully special ed school as where our old program was a typical school with special ed programs~ the biggest issue I have is busing...ugh just the thought gives me stress! Our district is very small and has no real special ed programs, none to fit Hannah anyways just the basic needs a little extra help learning type of thing and Hannah needs a lot more so were sent to a neighboring district for a stronger program. The school is 25min from my house...a bus probably 45min and starts at 8:20am- I got home from Cali basically Sunday morning and as I started sorting the mail I open a letter from transportation saying my daughters bus pickup is 6:10AM!!!! I seriously almost fainted and I was mixed with shock, anger, and sadness- I was shocked that they think its ok to wake a 5yr old baby up at 5AM to get ready for kindergarten and put her on a bus for over 2 hrs every morning.....never in anyones right mind would a typical 5yr old have that bus time or expectation! I was so angry they weren't treating Hann human and at 5yrs old basically had no heart, empathy, or common sense! And really sad to see how some people in this world discriminate against special needs and to me if you hurt my baby its worse then hurting myself and so to treat her bad is the worst thing anyone could do! I have tried going through the bus company and nothing helped so with the advice of other parents I realized I could get a drs note and put it in her education plan that she can not be on the bus longer then 45min, Im in the process now, wish us luck! They are basically trying to fit more kids on a bus to save money but really its not my problem and they better get it together, they need to get her to school in the 45min or make a program in my district and figure out what there going to do quick as I'll only be nice for so long;)

( Serena's first day:)

( Hannah's first day )

( Z making sure I dont get bord! )

Sunday, September 4, 2011

Time to Celebrate!

Were home at last! Laguna was breathtaking, my new top vacation spot with the mountains, the ocean, and Disneyland all wrapped up in one~~~but I have to say Michigan is HOME and I'm so happy to be home! Our last full day was Friday and since we started the treatment a day early we were left with our last day free to do as we pleased, so of course we had to take my little Minnie Mouse Princess to Disney to have a little fun! It was great our favorites were listening to*Princess  Ariel* tell her princess story, riding the *finding Nemo Submarine*, and of course Hannah's all time favorite * its a small world*:) It was actually nice and relaxing, although in the beginning LOL Wes started getting flashbacks of Disney world during Christmas which even till this day gives me nightmares! If I had a dollar every time someone came up to us and commented on how gorgeous Hannah is with her long eyelashes I swear it would cover this whole trip. We enjoyed California...we LOVED Dr Steenblock and staff...and now its time for "healing" the cells most crucial time to attach, sprout, and grow is the 7-10 days after transplanting them...then it is sort of like a getting pregnant and growing a baby- the cells grow and develop over months...within a year is around the max. All we can do at this point is pray, put our faith in Gods hands and know that either way she is not just mine but everyones miracle just as she is and for all she will become.

Friday, September 2, 2011

Day 4

Mission complete! We finished our 7'th and 8'th round of stem cells today and Hannah is definitely ready to be home...well we all are, I miss Serena and Zuheir more then words could begin to explain- I want my baby's so bad, I can't stand outside food anymore, and even missing my Rocky too. We were hoping to go to Disneyland today to celebrate but Hannah was very sleepy taking a 3hr nap and very crabby fussing for the entire day. I'm hoping tomorrow for our last day here she is in a better mood so we can enjoy our time and make the most of this beautiful trip.

Thursday, September 1, 2011

Day 3

Today was day 3...we had viles 5 and 6, things are still going really good, and Hannah is still doing really good:) Im absolutely LOVING California, its gorgeous here, today after our stemcell treatment we went to Laguna Beach again and had lunch at this beautiful restaurant right over the ocean. It was pure paradise we felt the crisp breeze and could smell the ocean, if my 2 baby's weren't still home I would probably stay here forever! On accident we realized we are staying 15min from Disneyland and so tomorrow if Hannah is feeling ok were going to celebrate our last day of stemcells with Minnie mouse!!!

Tuesday, August 30, 2011

Day 2

Today we had our third and forth viles of stem cells, surprisingly Hannah didn't really mind it too much and seems to do well afterwards~ Thank God! The Dr and his assistant both told me today about some of the kids They treat, they said how lucky I am that Hannah is somewhere in the middle on her "injury" spectrum I dont like the thought of a child worse off then mine as in my situation its sad to think of all thats been taken but you have to remember in life there is always someone who has it worse and you just need to always stand grateful- whatever your situation! I think yesterday I forgot to mention stem cells stink- we didn't realize this until yesterday after she them for the first time Wes and I keep smelling something we first thought it was outside- nope......we then thought it was the car-nope......maybe my purse-nope.....then we looked in the back seat to our little pumpkin smiling away and- YES we found our stinky culprit! I cant explain the smell, maybe a mix of creamed corn and flesh?!? :/ very gross stink let me tell you! I asked them today about it and its supposedly a good thing, means there in her body I guess for now we just stink on!

We went shopping a little afterwards..bought a few cute clothes for Serena and Hanners for school which starts as soon as we get back- Cant Wait! It was funny at the shops because we found this Mediterranean Arabic restaurant and I got so excited we asked if the food was Halal (kosher) and they didn't even know what that meant...I found that crazy LOL! Hannah is getting super bossy, I'm not going to Lie I LOVE this cognitive smarty pants piece of Hann...we were leaving the food court and she screamed and fuss when we put her in her stroller...we thought she'll stop soon so we pushed fast, slow, even zig zag- Nu was still not having it, we caved and I held her Wes pushed our empty stroller and she instantly pulled out her crooked smile and was belly laughing at Wes and I as we called her spoiled and told her soon she will be going in time out! I swear sometimes I think shes hiding horns under that sweet Halo of hers! When we were done we went back to our hotel to watch a movie and relax:) We have this beautiful pool here at the hotel but Hannah isn't allowed to swim because of the stemcells...oh well- I'll update more soon until then please remember prayers for Hannah!!!

Were here~ Day 1

We arrived today in Gorgeous Laguna Hills California, our plane took off from Michigan at 6am sharp and we flew for what seemed like forever, Hannah slept the first half and was awake smiling playing her Ipad for the second half. This was my first time flying American Airlines and it was great!

We arrived in California at 11am, we got our car, found the hotel, unpacked, rested and before we knew it we were off to see Dr.Steenblock. I was so excited meeting him finally, his staff was extremely sweet, nice and professional.There are 3 ways to transplant stem cells one is through a IV drip, the other is straight injections, the third is least powerful and not used often but its by nasal drip. Hannah's muscles are so extremely tight its hard to find a today we injected the stem cells into her belly and her hip area. She received 2 viles and will in the next few days receive 6more viles.

And here is Hannah and Dr Steenblock

                                   Here is Hannah getting her first round of Cells.

Overall I was very happy with the way things turned out today, Im confident in the next few days, and although Im missing my other 2 babys like crazy Im trying to stay focused, stay positive, and trying to maybe just maybe.....enjoy  this gorgeous view!

Thursday, August 25, 2011

Days away....

I cant believe it but we are almost here, for 5 years I have been learning, researching, and dreaming of having umbilical cord stem cell treatment for Hannah and its finally here. I am so excited yet so terrified.. please continue to keep Hannah in your prayers. Our plane takes off 6AM Monday morning, and we have an apt with Dr Steenblock later that afternoon. Dr Steenblock has treated over 700 children with Cerebral Palsy and brain injury's like Hannah, there is a 80%+ success rate of significant progress. We are using cultured expanded umbilical cord blood stem cells. The allergenic umbilical derived stem cells are of a particular type of neural precursor, white matter precursor type of cell that is identified as CD34+CD133+ progenitor cell. These types of cells are known to "home"into and en graft into the damaged white matter, we are praying to God we see positive results by 3mos post- transplant and continue to improve in the months to follow....The stem cells are given in viles and we are giving Hannah the absolute maximum amount, she will be getting a total of 8viles- but we are spreading it out over 4 days and she will be getting two a day. We have had check up's with Hannah's 2 best specialist and both are extremely excited to know we are going and are sent there blessings. We have our physiatrist's cell phone and she told us to call at anytime day or night if we need to or have any questions or concerns. Her low vision specialist did extra tests the other day so we can be sure to document exactly where we are pre-treatment and compare post treatment...I ask you all to continue to keep Hannah in your prayers!!

Monday, August 22, 2011

Blessings in disguise

I've always believed that everything happens for a reason, a good reason, even if at the time you don't see the good in something in time it will shine through all the stress and madness and these "unexpected blessings" will show how amazing life works out. A big example is Hannah, in the beginning I saw no good come from my baby girl suffering a brain injury at the hands of a neglectful doctor and hospital, over time I am able to step back and take a bigger deeper look at our life and see we are so blessed to have her- just as she is- and that she makes us special, she makes us beautiful...she makes us...US:) I'm definitely not saying I wouldn't push a magic button this second to heal her brain completely if I could, because I would, I would lay down and sacrifice my own life if that would give her a chance to live hers...I mean "really live" to walk, talk, run, dance, sing, get married, have babies, and live her life to the fullest. About a week ago I was all set for our stemcell trip on Aug 22, I had cleared the whole week, and scheduled everything important for the following weeks, I was ready and everything was all set. Thats when I got a call from Dr Steenblocks office in California and the nurse explained he Had a family crises and needed us to reschedule for the following week, he was going to cover the difference and costs to changing(and he has) but I cringed at the thought of dealing with airlines, and rescheduling the hotel, appointments, meetings, etc.... I did and 2 days after Hannah came down with a horrible cold~ so bad that had we not rescheduled we may have not been able to have the procedure done because she needs to be completely healthy and strong for the treatments. Although it was a pain to do~ I am SO happy with the way life simply worked out, we were given a small blessing, and are VERY excited to go to California on Aug 29th- a week from again please please keep my princess Hannah in your deepest thoughts and prayers.

Friday, August 19, 2011


I have the most amazingly beautiful Kitten in the entire world~ We love him to peices and couldn't ask for a better Cat! Rocky (aka. keey) we LOVE you!!!