Update on Alaina

Hi all, sorry for the delay in updating you on Alaina. It's been 2 weeks post-op now and she is doing great! We headed to New Jersey for Alaina's surgery and we drove. Total time for one way was just about 13 hours! Thankfully we have some family that lives exactly half way in between our two destinations...home and the hospital :) On the Monday before her surgery we had a doctors appointment at 9:30 in the morning and then we had the rest of the day to play. So we decided to head towards the Hudson Bay and visit some places we had only seen in pictures! Ellis Island and Liberty Island. Plus, we got to see the NYC sky line! We had so much fun and so did the girls. Here is a fun photo of the girls sitting at the feet of Lady Liberty!Surgery was scheduled for 7:30am the following day! Yikes, that meant we had to be at the hospital at 5:30am. No fun. The girls did great though and they were thoroughly confused that we woke them up and went outside while it was still dark out, they couldn't quite figure it out! This is Alaina pre-surgery. Getting all checked in and filling out all of those wonderful questionnaires :) She refused the hospital gown, she knows fashion already at 4 years of age!
This is Alaina about 6 hours post-op. She did fairly well, considering. She cried a lot right when she woke up. Once she was able to sit on mom's lap she fell right to sleep. Once moved into the next recovery room she did okay and when we tried to get her dressed she through up all over. So we layed her back down and she slept for another 2 hours. We got bored fast! Addie did so well and of course the nurses kept giving her cookies and juice:) Alaina had to wear the knee immobilizers for 24 hours this is just so she can keep getting a great stretch on her hamstrings and after the 24 hours she needs to wear them during the night time. This is also to retrain her brain and body to not sleep in a fetal position. It's always harder to stretch out in the morning! She also has little casts on her feet. They are a lot like serial casting only closer to her skin. This is to keep her feet in a perfect 90 degree position so she can have great stretching and perfect positioning. These are to be worn for 4 weeks!
Here we are back at home. This is Thursday so 2 days post-op. She now has to take baths in the sink so we don't get her casts wet :) She thinks this is very silly!
Here is a photo I took of her bruises. Can you believe it no sutures, just very tiny pinholes where the "incision" took place.
The results that we have seen so far are just amazing. Alaina is doing things already that she was never able to do before, due to her severe spasticity! For example her sitting has improved 100% she was unable to sit in a straight legged position or get into that sitting position on her own and now she can do both. It is so strange now, when she is in bed she will call for me and I will go into her room and she is sitting up in bed. That has never happened. Another thing Alaina had done was an alcohol block. This was to help her to be able to separate her leg movements. She did a lot of mirror movement. (When one leg moves the other moves with it) She is now able to separate her legs completely and she has started to try and climb stairs another thing that was impossible for her before the surgery!

If you have a child that has spastic CP or know someone that has a child that has it, I highly recommend looking into Dr. Nuzzo's procedure!

Independence at it's BEST!

This video shows Alaina being super independent! The other day I was busy doing household things when all of a sudden I couldn't find Alaina. She had made it half way down the stairs all by herself and was trying to climb back up them! (Climbing is harder to do) I was so impressed by her bravery and that she knew to turn around and go down feet first. So, ever since then we have been making her do it all by herself! She is improving with each day! Just on Saturday Jeremy was downstairs and then all of a sudden he said there was Alaina :)

Also, another accomplishment was yesterday Addie was playing with the little people barn, (a favorite in our house) on the ottoman. Alaina really wanted to play with it so she had figured out how to pull up to standing and was playing with it:) We could not believe it!!!

On another note, a week ago I had to take her to the hospital to get some lab work done for her upcoming surgery. I got a phone call today telling me that her EKG came back abnormal. They said not to worry that they were just doing a follow-up for precaution, but as a mother how can I not worry? It is scheduled with a heart specialist on Wed, the 24th. So please keep her and us in your prayers! I will keep you posted!

Edited to say: Sorry that the video is dark and sideways :) I will try to get a better video so you can see more and so you don't get a kink in your neck! :)

My Baby is Back in School!

Alaina's first day of school was yesterday! She's growing up so fast! She had a great day and didn't want to leave!
Today I had parent/teacher conferences and they said Alaina looks great and is happy with how she is doing despite having the whole summer off! Basically this was a catch up with what happened over the summer!
I promise pictures soon!

Back to School!!!

I can't believe in less than a week we will be heading back and forth to Grand Rapids!!! This summer has just flown by! :( Although we are sad that summer is coming to a close we are excited that Alaina is going to be getting back into school and that means some major therapy! Also, everyday is just one day closer to us leaving for NJ and getting her surgery done! She has a doctor's appointment on the 5th of September. This will be a physical to ensure the doctor that she is healthy for surgery. Also, she needs to have an EKG done and blood work. One more step closer!

Pray for Alaina, she recently got the flu and hasn't been able to keep anything down! It's been a rough 36 hours in this household!

It's now a MEMORY!!!

These are just a few pictures of the event on Saturday! We had a blast and I am happy to say that it is now just a memory!

In case you are all wondering the grand total......just over $13,000

Praise God, he has supplied us with what we need again and again!

This amount will cover the cost of her surgery almost to the penny!

If you still feel led to give I am leaving the donation button up. Alaina attends a special school for children with Cerebral Palsy and Spina Bifida the cost to attend for the year is just over $15,000. We know that this is expensive, but we feel that this is the right place for her at this time in her life!

Thank you to everyone that made this fund-raiser possible and your generosity is immensely appreciated!

Just ONE more week!

I can't even believe that the 16th is creeping up so fast! It seems like just the other day we were sitting at Pizza Hut talking about what we were going to do? That was in February! My how time flys! I am so excited for it to be here, and for it to be over with.

Hope to see many of you next Saturday. It should be a fun day for the whole family and I know my kids are really excited and they really don't know what it is they are excited about :) Although now that they know the Fire Truck is coming they are just that much more excited! It will be fun

Pay It Forward

I really am amazed and blessed at the help we've received from the community, family, friends and strangers! Thank you, merci, gracias...


I know one day I will be able to pay it forward and help out somebody, maybe it will be you? Looking forward to that day!

It's getting closer and closer by the second according to my countdown clock! I'm not sure if that thing is giving me more anxiety or helping me remember when our event is? All of the details are coming together and I am excited, nervous and stressed all rolled into the pit of my stomach! My biggest fear is that no one will come! Does anyone know that this carnival/auction is even happening?


A few prayer requests:

• The main road in front of the church is all torn up to pieces! Please pray that people that want to come will be able to find it and there will not be any major construction going on the day of our event!


• that people will come:)


• The weather will be nice for our event!

Praises:

• My husband knows a couple that puts on a carnival themed event every year. They are letting us borrow whatever we need!!! Thank you


• My friends and family are helping me plan this event!


• We already have had some monetary donations come in and we are amazed!

Notice in the sidebar I have added a list of events taking place during the carnival and some of the auction items!

Do you like to buy online?

Today beginning at 4:00pm EST two shops on Etsy will be holding a mini-fundraiser for Alaina, with all the proceeds going directly to her! This picture just shows off some of the goodies that will be up for sale! So if you like to buy online, love handmade goodies that no one else has then you need to go visit these adorable shops and start adding to that cart of yours!

The shops you can find all of the goodies at are Little Bit Funky and Jane Says these two girls are super friendly and take paypal too:)

Thank you...

Hi All, I have been trying lately to put on this blog a meter to keep everyone up to date on how much money we have raised for Alaina. I'm having a tough time finding one:) To date we have raised $1840, Thank you!

An update on her surgery...everything is going as planned and we have the date, we just booked our hotel and I just made an appointment with her pediatrician for a history and physical, plus she needs some lab work done! Since we have confirmed that we are having the surgery done, the amounts are confirmed...for the actual surgery it is about $8700, for her to be in the hospital it is about $3500 and for the anesthesiologist it is $875. So we estimated a little low. We trust that God will provide for our needs and we are so thankful for every one's support thus far!!!

At the park...an update!

Alaina is doing so well! We officially got the letter from Dr. Nuzzo stating that she is a candidate for the PERC's surgery so we are very excited about that. So we are planning for the end of September. There is a link to what Dr. Nuzzo does on the sidebar. We took the girls to the park and they had so much fun!
This picture is so cute. Addie wanted to hang onto Alaina's hand, but she needs it to hold onto the walker, so Addie just held onto her walker and walked side by side:) so sweet!
We are on summer vacation and Alaina is enrolled in Occupational therapy and Aquatic therapy. She loves both!

Thank you to all who have supported us already! We appreciate it so much!

I will be adding the list of auction items soon!

Our Sponsorship Letter...

Thank you for taking the time to read this letter and learn more about the fundraising efforts for our daughter, Alaina Joy. We were very thankful when Alaina turned four years old in April. This was a miracle, considering she was born 16 weeks early and weighed just over 1 ½ pounds! She overcame many obstacles during her four-month stay at the DeVos Children’s Hospital. At 15 months old, Alaina was diagnosed with Cerebral Palsy, specifically Spastic Diplegia, which causes muscles in the hips and legs to tighten. Because of this, Alaina has a hard time walking, sitting and doing many other normal four year old activities.

Recently, we were introduced to the Conductive Learning Center (CLC), which was established to help children like Alaina. Since she began attending the CLC, Alaina’s self confidence has improved, as well as her stamina and strength. She is now able to pull herself to her feet and sit for longer durations. Alaina is in a classroom setting for five hours a day, five days a week. In this environment, she is motivated by both the therapists and other children just like her. The CLC shares our goal, which is to help Alaina become as independent as possible.

In addition to conductive education, there is a procedure called PERCs (selective percutaneous myofascial lengthening). It is an outpatient surgery that lengthens tight muscles. This would greatly increase Alaina’s mobility potential by allowing her muscles to be stretched more than ever before. If these muscles are not stretched, they will shorten permanently, which could cause bone deformities. We have seen firsthand the marvelous results of kids who have undergone the PERCs procedure.

We are excited by the potential that these opportunities offer Alaina, but we are overwhelmed by the financial burden. The annual tuition to attend the CLC is $15,000. The estimated cost to perform the PERCs procedure is $8,000. To help with these expenses, we will be hosting an upcoming carnival/auction fundraiser to benefit Alaina’s care. We are seeking help from our friends, family and community businesses. We greatly appreciate any assistance, referrals and support you can provide Alaina. With your permission, we would like to acknowledge your support at our event, and highlight you on our blog (http://www.thealainajoyfundraiser.blogspot.com/). This event will be held on Saturday, August 16, 2008 at First Baptist Church of Zeeland, MI. We hope to see you there.

Sincerely,
Jeremy and Trisha


I (we) would like to help in the following way(s):

Donate a new item or gift certificate for the auction
Make a monetary donation to Alaina Joy

Volunteer to help at the upcoming carnival/auction fundraiser

I (we) wish to remain anonymous

*For questions or additional information, please feel free to contact us at daisysanddots@yahoo.com

Spastic Diplegia - A form of Cerebral Palsy

Cerebral palsy is the name for a group of chronic conditions affecting body movement and muscle coordination. Cerebral palsy can be caused by trauma to one or more specific areas of the brain, most likely occurring sometime between fetal development and infancy. The disorders associated with cerebral palsy are not caused by problems in the muscles or nerves, but instead by faulty development or damage to motor areas in the brain. This disrupts the brain's ability to properly control movement and posture. The area of the brain in which trauma occurred will determine the affects of the condition.
Cerebral palsy has different forms and one such form is spastic diplegia. Spastic diplegia is when both legs are affected by cerebral palsy. A patient may have difficulty walking because of tight muscles in the hips and legs, causing the legs to turn inward and cross at the knees. This causes the legs to move stiff and awkward causing a characteristic walking rhythm known as the scissors gait.
Spastic diplegia cerebral palsy is caused by brain damage in the outer layer of the brain, the cerebral cortex. Spastic diplegia cerebral palsy affects nearly 70 to 80 percent of patients and is the most common form of cerebral palsy. Spastic diplegia cerebral palsy symptoms include increased tone, or tension, in a muscle. Normal muscles work in pairs and when one group of muscles contract, the other group relaxes, allowing uninhibited movement in the desired direction.
Complications in brain-to-nerve-to-muscle communication prevent the normal degree of muscle tension. Muscles affected by spastic diplegia cerebral palsy become active together and block effective movement. This results in the muscles of spastic diplegia cerebral palsy patients to be constantly tense, or spastic.
Cerebral palsy can be classified by the way it affects movement or by the number of limbs it affects. These classifications can be combined to describe severe conditions such as spastic diplegia cerebral palsy. In spastic diplegia cerebral palsy, all four limbs are affected; both legs, as well as mild affects in the arms are present.
Spastic diplegia cerebral palsy tends to affect the legs of a patient more than the arms. Spastic diplegia patients have more extensive involvement of the lower extremity than the upper extremity. Patients with spastic diplegia cerebral palsy will eventually have the ability to walk. Patients with spastic diplegia cerebral palsy are typically characterized by a crouched gait. Gait analysis and proper treatment can correct toe walking and flexed knees, which are common attributes of spastic diplegia.
Individuals with spastic diplegia can be helped by specialized treatment teams to decide which treatments are best suited for them. Leg braces, gait analysis, botox injections, hyperbaric oxygen treatment, and several other treatments can help to manage spastic diplegia cerebral palsy. A specialized treatment team should include a physical therapist, pediatrician, physiatrist, neurologist and neurosurgeon, and an orthopedic surgeon that can all aid in the decision making process.

* Information gathered from the Cerebral Palsy Source *

What is Cerebral Palsy?

Cerebral Palsy (CP) is a term used to describe a group of disorders affecting body movement and muscle co-ordination. The medical definition of cerebral palsy is a "non-progressive" but not unchanging disorder of movement and/or posture, due to an insult to or anomaly of the developing brain. Development of the brain starts in early pregnancy and continues until about age three. Damage to the brain during this time may result in cerebral palsy.

This damage interferes with messages from the brain to the body, and from the body to the brain. The effects of cerebral palsy vary widely from individual to individual. At its mildest, cerebral palsy may result in a slight awkwardness of movement or hand control. At its most severe, CP may result in virtually no muscle control, profoundly affecting movement and speech. Depending on which areas of the brain have been damaged, one or more of the following may occur:

(1) muscle tightness or spasms
(2) involuntary movement
(3) difficulty with "gross motor skills" such as walking or running
(4) difficulty with "fine motor skills" such as writing or doing up buttons
(5) difficulty in perception and sensation


These effects may cause associated problems such as difficulties in feeding, poor bladder and bowel control, breathing problems, and pressure sores. The brain damage which caused cerebral palsy may also lead to other conditions such as: seizures, learning disabilities or developmental delay. It is important to remember that limbs affected by cerebral palsy are not paralysed and can feel pain, heat, cold and pressure. It is also important to remember that the degree of physical disability experienced by a person with cerebral palsy is not an indication of his/her level of intelligence.

Cerebral palsy is not a progressive condition - damage to the brain is a one-time event so it will not get worse - and people with cerebral palsy have a normal life-span. Although the condition is not progressive, the effects of CP may change over time. Some may improve: for example, a child whose hands are affected may be able to gain enough hand control to write and to dress him/herself. Others may get worse: tight muscles can cause problems in the hips and spine of growing children which require orthopaedic surgery; the aging process can be harder on bodies with abnormal posture or which have had little exercise.

Medically it is important to remember that Cerebral Palsy:

(1) is NOT contagious
(2) is NOT hereditary
(3) is NOT life-threatening

*This information was gathered from the OFCP