Allison Grace Online

Allison Grace is a Miracle,
A true Angel living on Earth. Allison is severely mentally and physically challenged and making slow but steady progress.

Without a dream, there is no hope, without hope there is no meaning........You are our Meaning.

Happy Birthday my sweet Angel girl. What would my life be without you. It has been a short 8 years of medical tests, therapies, special equipment and more. But moreso a long 8 years of undying love, joy, pure innocence, and much laughter.

I cant believe it was 8 years ago today I laid my eyes on your beautiful round face, and held the tiny fingers of my one and only baby girl. Eight years ago I had no idea you would wear pink almost everyday, make me smile as much as you do, or that you would open our hearts and teach us the real meaning of unconditional love.

You have taught Daddy and I what real love is, and how it always should be. I relish in your pure innocence and your true joy of life. I love that you live for the moment and make our tummies hurt from the laughter you give us. You are a child with a diagnoses, but you do not let it define who you are.

Without a dream, there is no hope, without hope there is no meaning........You are our Meaning.

Dec 11, 2007
Alli had her first haircut and she did a wonderful job. She sat ther like a pro for a whole hour and enjoyed her special treatment. She had almost 12 inches cut off and her hair looks wonderful. I will put some pics up soon.
Oct 2007
Sorry I havent had much time to write, we are in the process of fixing up our new house. You are going to love it. You will have your own room and a big living room to play around in. I promise to write more later, as soon as things get settled. Love you.

Jan 4th, 2007

Happy Birthday Baby girl!!! Love you with my heart, soul and whole being.

Dec 31st, 2006

This will be my last entry of the year for you baby girl, and what a year it has been. You are growing up so fast, its hard to believe in 4 days you will be 7 years old. You are making amazing progress and I still thank God daily for having such a happy and healthy child in our lives. You took your first steps in a walker a month ago, it made everyone cry...what a day. Talk to you soon. Happy birthday Princess.

_{^{August 30th, 2006}}

I cant believe I went the whole summer without adding pictures or updating. Ill just say you keep me hopping and keep me on my toes. We did quite a bit this summer. We went swimming almost everyday, went for walks, spent time at Grandmas, went yardsaling, went to the park and went on vacation.

We just got back from Shriners Hospital for Children in Chicago and they did not have any answers for us. They want to run your Angelman test one more time. They did say you have the muscle strength to stand up and walk, we just have to keep working at it.

You started your new school on Tuesday and I have seen nothing but smiles when you get off the bus. Its a full day program, which I hope you adjust well to. Keep smiling baby girl, Ive added some pics :)

April 21st, 2006

We got a letter in the mail and your appointment has been set to go to Shriners. We will see the orthopedics, spine doctor, along with the neurologist and geneticist.

We went and visited your new school for next year and Im not quite sure how I feel about it yet. It seems like such a long day for you, and me. It is a school for severly handicapped children and it was very heartbreaking to see all the children and their disabilities.

Summer is approaching fast and I am looking forward to putting you back in the pool that you love so much.

March 27th, 2006

Only 9 weeks left of school, can you believe it? You are going to Miss Mr. Paul and Ms. Monica. Ms. Monica pampers you on a daily basis. You had an allergy test last week and the final conclusions are in. You are no longer allergic to milk or corn!! Of course because of the severe reaction you had last time I was a little afraid to give you milk. Grandma and I made you a bottle of half milk and half formula and you sucked it down like it was the best thing you ever tasted. The best part is you did not have a reaction. So now we are starting you on new formula made for kids just like you that have eating disorders. You will be getting all your daily nutrients from your new drink. Also we just ordered a new wheelchair for you, since you outgrew the one you have now. The hardest decision is deciding on what color to have it painted. Mom wants toxic green, and Daddy wants Candy Apple Red. You had your first flu a few weeks ago, and did not handle it very well. But you bounced right back. You are still a mover and a shaker and can get into anything and everything. You love laying under tables, beds etc, places that make you feel safe. You are really starting to get vocal, just wish I could understand what you were saying LOL. We also applied to be seen at the Shriners hospital and should find out soon about that. Love you baby girl, keep up the good work!!

Jan 4th, 2006

Happy New Year and Happy Birthday. Has it really been 6 years since you've entered out lives? It has been a long journey and we all have learned so much from you. I have learned patience, persistence, perseverance and thank you for the unconditional love you have given us. Happy Birthday!!

November 13th, 2005

School is in full swing and you are loving every minute of it. We got new Ankle braces for you. I cant believe your feet grew so much in a year. The process of casting your feet left everyone needing a drink, but it was worth it when we saw the finished product. You are starting to grow out of your wheelchair so we are in the process of getting you a new one. You are eating better and better everyday. Still not enough to live on so your still taking your bottles too, but we are finally making major progress in the eating department. You have lost a total of 4 teeth now, and only two have come back in. I took you to the dentist last week and you are still cavity free. You did not like the papoose that held you down, but I dont blame you. No new news from the Neuro or Gen, still no answers. Keep on smiling baby girl.

August 4th, 2005

Allisons EEG came back normal. It showed no abnormal or seizure activity.

July 21st, 2005

Phew, the tooth fairy has been busy. You have lost 3 teeth now and 2 more are loose.

Allison and I have been doing a lot of work on her muscles, trying to get them strong enough for her to stand. We work at least an hour in the pool each day and she is getting really good at standing up straight and tall. On Monday we went to Detroit and Allison had an EEG test. We should get the results of that by next week. My poor baby was so pitiful and funny at the same time. Before she fell asleep from the sedation, she just laid on the table and stared at me with a goofy looking smile on her face. On the other hand It was hard to see her taped down to a table, and I couldn't pick her up. On a positive note, I did get to paint her toenails and fingernails for the first time. I also gave her bangs a little trim :)

Friday the 13th, 2005

My baby lost her first tooth. Allison did very well although it was very traumatic for me. The tooth Fairy came and left a can of Isomil Formula.

We are still in search of a diagnoses for Allison.

Happy 5th Birthday Baby Girl!!

Happy Birthday Baby girl, I can't believe you are 5 years old. Ohhh I remember the day you were born..............Thank you for coming into our lives.

It sure has been a while since I have updated. Things are going well. Allison is very mobile yet not walking. She is crawling around very well and she never stops. She is full of energy and always fun to be around. She eats anything in sight, paper being her favorite. Still no diagnosis, but thats okay. She is still very happy and pain free. Medically we couldnt ask for a healthier child. Allison attends school 3 hours a day, 5 days a week and loves it. She is really starting to eat new foods, hopefully we can be off formula within the next year. We have her 5 year appt next week.

July 2004

Allisons allergy test came back and she is allergic to corn. The test says she is NOT allergic to milk yet when we gave it to her, she went into anaphaylatic shock. She sees the Gastrointestinal specialist on Friday. He is our last step in getting insurance to cover some of our formula expenses.

Allison Dentist appointment went very well, much better than I had anticipated. She has NO cavities and did not have to be sedated!! She goes back in October for a cleaning.

She is really starting to put a lot of weight on her legs and is eager to stand in our laps, a huge improvement. I keep telling her she has to walk before she hits 80 pounds LOL.

Her last set of tests place Allison physically at a 10 month old level!! WTG Baby girl!!

May 2004

Things are going well with Allison, as she seems to be making a little bit of progress everyday. She is such a joy to be around, always smiling, always "singing". She just had a blood test to see if she is still allergic to milk, we should find out anyday. She was denied for formula again from insurance, as they say she doent need it. I dont understand that, its the only thing she eats. Allison has her first Dentist appt in June and Im a bit nervous as I know she will be sedated. She also has an appt with a GI specialist, the Neurologist and the Genetics doctor all with in the next 2 months.

Allison Grace

There is no place better to start than the beginning. Please Journey with Us through Allison's wonderful life full of hopes, dreams and accomplishments.

We were happily planning our third child to complete our family, and as the home pregnancy test was shaded with two pink lines, My husband and I were ecstatic. We joyously announced to everyone we knew we were having another baby. I knew I shouldn't but I told my other children right away, I just couldn't contain my excitement.

My Pregnancy with Allison went quite smoothly compared to the previous ones. I did spot from 17-34 weeks, but that seemed to be a trend with me. I was also carefully monitored for Gestational diabetes and Low Progesterone levels, but everything was right on track. We had several ultrasounds, and never once knew her sex. She was due around the middle of January, and I remember so vividly being afraid to have a Millennium baby. Thoughts of No Electricity and M.A.S.H. Scenes danced through my head.

She arrived at 1pm on January 4th, a magnificent delivery, only 4 hours from start to finish. She was born with the prettiest Blue eyes and tons of blonde curls, we were in love. We left the hospital exactly 24 hours after her birth.

For the first few days, everyone was settling into their new roles of big brothers and parents of three. At the time Allison was born, our sons were 5 and 2 years old. Cody adored Allison from the first Minute he laid eyes on her, Shane thought she was okay but rather would of had a puppy. Things were very much normal. Feeding every 3 hours, with sleeping in between. She was a wonderful sleeper, just like the boys. I had no reason for concern.

Around a week old she started sounding a little raspy. I took her to the doctor and they said she was fine, lungs clear, I was just being a new mother. Three weeks later she smiled at us for the first time, and what a beauty of a smile it was. I took her back to the doctors at 4 weeks and 5 still concerned about her breathing. Again at 4 weeks they said she was a loud breather and her lungs were clear. When I took her to the doctor at five weeks, they gave me a look that chilled me. They told me to rush her to the Hospital ASAP. I called my husband and he actually beat us to the hospital where the admitted her immediately. They put her on Oxygen and started an IV.

Numerous of tests were run, but no one could tell us what was going on. At first they said pneumonia, the next day it was double pneumonia. On February 14th, they came into our room and said things did not look so good. Allison was on the fence and she could teeter anyway. We were so devastated. She was a little sick when I brought her to the hospital and now they were telling me she may not make it through the night. I then demanded she be transferred to another hospital, which specialized in Children regardless of what my insurance company said.

We were then transferred to one of the best Hospitals in my state and Allison was placed in the PICU. She looked so tiny in that crib. Admitted at 11pds 3 ounces, down to 8 pds 11 ounces, smaller than her birth weight. We were place in isolation after 8 days and still no diagnoses of her condition. She had much better care at the 2nd hospital and within 2 days she looked wonderful, almost completely off the oxygen. Within 3 days were moved out of the PICU to a regular Peds room but still in isolation. She was tested for so many things, and the last conclusion was Pertussis (Whooping Cough). She had not recieved her DTP shot, she was to young. We never did get an actual confirmation that it was whooping cough, but she surely had something.

Allison came home 10 days later, a little smaller and bruised from all the IVs. She stayed on steroids for 2 weeks and antibiotics for another month. She started to put her weight back on but seemed a little different from my other children.

At her two month appointment I expressed my concerns that she smiled before she got sick but since she had been home, she had not smiled at us. He said she has been extremely sick and it would take a while for her to gain her strength back. I was concerned about several things, that were all accounted for by her sickness.

At 4 Months I expressed my concerns again, something just did not seem right. I received the same answers...this time I was not happy. I demanded a 2nd opinion and was sent to Pediatric Neurologist. Our appt took a long time get in and we were not seen till she was 7 months. At 7 months she could barely hold her head up, made no contact, no smiles, no rolling over, nothing.

We finally made it to the specialist appt where they also offered us no answers, but were referred to a Geneticist.

That is a day I will never forget, August 8th 2000, Allison now 8 months old. They reviewed her case history, examined her and told us she had Rett syndrome. I was clueless to what Rett syndrome was. We were told she would never talk or walk. I left thinkging things could be much worse. I did not have a clue what I was in for.
An hour later I got home and did some research on the web and was devastated by what I read. I was in total shock. All I could do was hug my beautiful daughter who had just begun to live her life and cry. I cried for 2 days straight, and then decided I had to pull myself together for my family. I got information for a support group, phone number of mothers, and hospitals that were doing new procedures in helping Girls with Rett Syndrome.

The Next step was to have the Genetic test for Retts. It took almost 2 months to get the correct paperwork filled out from insurance, since this was a rare and expensive test. We were told the results would take anywhere from 3-6 months. So we patiently waited. The doctors assured us once again that this is what she had, the test was just for insurance purposes.

Two days before Thanksgiving, I called to check on the results. To our surprise her tests came back normal, No Rett. We were elated and shocked, know back on the trek to find out what was wrong with our daughter. A month later came the $1200.00 Bill for the test that our insurance company had denied.

Through all of this, she still had breathing problems, and was placed on daily Nebulizer treatments. She also had problems taking a bottle, and would aspirate her fluids, causing aspirational pneumonia. She was hospitalized 2 times for aspirational pneumonia before her first birthday.

At her 12 month checkup, her weight and height were right on Target, but her head was not growing. We were sent to The Top Children's Hospital in the State and sent to the Chief Neurosurgeon of the hospital. This appt took several weeks to get into, and once we were there, we were seen for maybe 2 minutes. She took one look at my daughters X-rays and said her head is growing fine. I asked if she could she give us some insight on what we could do for Allison, who to see etc. She said I don't know what's wrong with your daughter and more than likely you will never find out. We were so let down. We had been hoping for some where to turn for answers, and once again, told nothing.

By this time, Allison had finally started rolling over and slightly holding her head steady. Our biggest accomplishment was a smile. I remember that day, what a great day it was.

Allison still did not make eye contact, pick up toys, try to feed herself, touch objects, coo or talk and would only smile if tickled. I decided to try to get help from the State program for Children with Disabilities. Allison was enrolled in a school program called Early on. There she receives her Physical, Occupational and Speech Therapy. This was the only program we could do for Alli, because once again still no diagnoses.

This story has been going on for 7 years. I think I know every medical test for every Medical syndrome. We have been diagnosed and undiagnosed with some of the most Horrific syndromes. Right now I have decided to let Allison go at her own pace, and not subject her to any more tests.