Happy Hallowindy?

Well I thought this halloween would be enjoyable. I was wrong. Not only was it windy, but the weather was horrible, it was 30 degrees outside.

We did not pass out candy this year. Instead I decided to dress both of my kids up and take pics. We did have a last minute costume change. Greg was a hip skeleton. My daughter Gabby was a bumble bee.

Greg did not partake in trick or treating around the neighborhood on the count of his preexisting cold.

His sister Gabby did. She did not enjoy it because of the weather. Needless to say we turned in early!.

Halloween Room

I know I am so late with this post. Halloween is almost here! I decorated Greg's room at the beginning of October.

Gregory is going to be a skeleton for halloween. Greg's sister gabby is going to be a bumble bee.

Our plans for halloween include trick or treating at crossroads village. Then we are going to see a few relatives to show off our spooky threads!

Happy Halloween everyone , Be Safe!!!!!

School Dayz

Today Gregory's Teacher Mary stopped by. She has not seen Greg all summer. She was surprised to see how much he has grown. They started their day with a song "Hello, Good Morning". Next, they read a story called "We love fall - author unknown". Finally Mary concluded Greg's school day with a Art Project. She had Gregory hold on to a acorn. After, they colored a picture of a Tree and glued different color leaves on to the paper. (I will take more pictures next time). Here is the completed picture.



2 hours later Greg's PT (Physical Therapist) Carol showed up. She started with ROM (range of motion). She exercised both arms and legs. She then finished her session with Gregory standing in his stander. Speaking of, Over the summer Greg was approved for two new pieces of equipment. The first is a Supine Stander by Rifton. The second a bath chair. Here are some pictures of Gregory in his stander.

First trial started at 40 degree's.



Here is Greg's bath Chair

Were Back!!

My how time flies. Summer is almost over, and Winter is slowly creeping upon us. Greg, nor I, are the least bit excited. I know I have not updated in a few months (life happens you know how that goes). I plan on posting updates regularly. With Greg's schooling starting back up I should have more things to blog about. (FYI...Greg has been in excellent health this whole Summer!)

Also, I know many of you who view Greg's blog do not have a gmail account. Greg and I strongly urge you all to get one. It's free! This way you can leave comments, questions, or messages.


I hope everyone has a great holiday weekend!

Xoxo Brittney

D Day

Today Greg received his Dafo's (Leg Braces). I have to say that although I could not wait to try them on, Greg on the other hand was ticked off. He was enjoying his sleep only to be rudely awaken by two snug braces around his legs. After realizing that we were going to keep them on for a while, he went back to sleep. I really wanted to bring my camcorder in to tape the whole process but decided against it at the last minute. For the next orthotic piece I will. He is suppose to be receiving WHOs (Wrist , hand, orthotics). These will help Gregory from having contractures in his hand and wrist. I have pictures of him actually in the braces. I will post them as soon as I upload them to my computer.

I took a picture of the final result.

Counting Blessings, Boxes and Blankets

I know it has been a while since I have updated. So much has occurred. For starters this Michigan weather can't seem to make it's mind up. One day it's 70 the next day it's snowing..

Anyhow to the exciting stuff (well for me at least) Gregory finally got his bed !!!! We have been waiting on approval for this bed for years, since 2007 . I have fought this DME company and insurance with tooth and nail ,and just when I thought everything I have done and advocated for went in vain, God showed up. It is a saying in the Black community when "God shows up, he shows out". This basically means when God works he leaves no stone unturned.

This is what actually happened:

April 20, 2009 - 8 am I call DME company to get an update on the status of our Bed claim. The woman assigned to his case becomes real snotty, states she "has loads of other cases to finish, highly doubts this bed will be approved". " I am more than welcome to go to another dealer".

April 20, 10am- On hold with BCBS for 45 minutes jumping from one digital receptionist to the next.( Basically going no where)

April 20, 11am- Highly frustrated, I say a quick prayer asking God If it is his will to please let this claim for a bed come through.

April 20, 11:30 ish - Received call from DME, Stated they received a call from BCBS stating our claim has been APPROVED for a bed. Soon as a fee schedule is received they will order a bed.( Fee schedule's usually take 2 weeks).

April 21, 9 am Dme received fee schedule. They will start the process of ordering the bed.
2 minutes later received word they already have a bed with the exact specifications as Gregory's in stock. Will set up an afternoon delivery between 2pm-4pm!!!!


This process has taught me that God is not working on my time. He works in his own time.
I have to be patient and know that God is still working. I have to continue to count my blessing during my triumphs and my tribulations. I have to realize that despite how others may view me or my circumstances that I am truly blessed. God makes no mistakes!


Sorry if the post seems tedious. I just wanted to share this experience!

Hip Helpers

A few weeks ago Greg's PT (Physical Therapist) Carol suggest a hip brace to keep Gregory's legs in alignment. The name of the hip brace is called a Rhino. Since we have already tried that route unsuccessfully I was open to hear new options. She told me about a company called Hip Helpers. They make special shorts to help keep the child's legs together. They were created for children with Downs Syndrome, but will work for anyone who suffers from certain leg and hip conditions.

We are in our trial stage.
Greg tolerated 15 minutes on his first try.

Here is a close up of the shorts



I hope these work. I will keep everyone posted!

Greg's New Company

So I am sitting around the house contemplating what I can get my hands into. Greg is sleep. Gabby is quietly entertaining herself with the Backyardigans. Their father, reading about a new political scandal. Everyone seems content. Except me. I found a homeless teddy bear in the corner. I decided he needed a makeover. So I gave him one.
Meet Ollie, Gregory's new and improved Teddy Bear. I gave the Bear a Tracheostomy and a Gastrostomy. I am very happy with the outcome. I wanted Greg to be awake to see what I created. Unfortunately Greg was catchin' some Z's unaware of his surroundings.
Hopefully Greg will see the bear in the morning; only if his sister Gabby does not reach it first.
Until next time,

Update!

I have not been on for a while. My apologies. I have been extremely busy between my children , my classes ,and starting my online business, which i hope to post more about in the near future.

Gregory is maintaining good health despite a unsuccessful surgery. I had hoped that the surgery would be a end to his copious drooling. I feel slighted to say the least. The Doctors have a nice check while my poor son has a sore neck , the same drooling problem, and a possible new allergy. I was so sure after doing the research, talking to other parents, and professionals that the surgery would be a guaranteed success.

As they say, you win some you loose some. I am just thankful my son's health is back to normal.

I have also been working with Gregory's Doctor and the Dme company to try and get Gregory a new bed. He is growing everyday, and the bed he uses now is to small. He needs a hospital bed that can elevate his head. The elevation helps with the reflux as well as Gregory's secretions. I have been advocating for 2 weeks now I hope it pays off.

FYI to all the parents You are your child's best advocate! No one knows your child better than you do. You have the power to make a great change in your child's life. Despite what any professional may tell you! Do not be intimidated. Stay informed, stay involved ,and most importantly never give up!! A squeaky wheel, gets the grease!

God Bless,

Brittney

Happy President's Day

Myspace 2.0 layouts & Myspace Layouts

I just wanted to wish everyone a Happy President's Day! Our country has seen hard times in the past and present. I hope our President can learn from the mistakes made in the past, so change will be brought in the future.

Home Sweet Home

Well Gregory has made a 360˚ recovery. We were discharged from home on 2-12. My son continues to amaze. He went from a turn for the worse (ventilator) ,to a superb state. I did not know latex could cause such problems. The surgery seems to be a success. Greg still has minor secretions ( drool). I am just happy that we are not going through 15 towels in one day.


We will have to make a post op visit to an allergist. They will do a blood test to make sure Greg is in fact allergic to latex. They sent us home with an epipen (epinephrin) just in case.

I would like to send a special Thanks x2 to Denise on the Mott Children's PICU Floor. She gave Gregory outstanding care!

God is truly Good!

Post Surgery Mayhem!

Today was the day of Gregory's surgery. The surgery was suppose to be a "minimal procedure". Gregory's tentative surgery schedule was suppose to be: 1. Bilateral ear tube replacements. 2. Parotid duct ligation 3. Submandibular gland excision.

#2 ,and #3 are way's to control excess drooling. We arrived at 8:15 and surgery was scheduled for 9:30 am. Greg's operation didn't start until 10: 20 am. During the operation they said Gregory had an "allergic reaction" to the latex drain tubes. They said he had bronchial spasms. Since having this episode in the OR he is now intubated (ventilator) and a current patient in the PICU.


This surgery went from minimal to pure mayhem. Please keep gregory in your prayers as he recovers from this dramatic incident.

15 below is not that cold!

Just when you think all the cold and frigid temperatures have subsided, here comes the weather advisories. I guess this is what I should expect living in unpredictable Michigan. (The state where you can experience all four seasons in one day)

According to the News we are suppose to get scattered flurries and a wind chill below 15. They will not cancel Gregory's class until the wind chill gets below 17.
A two degree difference! That is ridiculous. I guess below 15 is not sufficiently cold for the school administration. The majority of the staff park their cars and enter the building. We on the other hand, the parents, have to park the car, unload the wheelchair, get our child, get their equipment or backpacks, and proceed towards the entrance.

Then when you enter the building you find out that the heat is only turned up 3 degrees higher than the temperature outdoors.

Excuse me for complaining, but some things just do not make any sense!

"Gregory" Picasso on Wheels

I have a weak spot for art. Even more so when the art is from one of my children. Gregory's Teacher, Mrs. Mary, was over today. (F.Y.I Gregory has class twice a week for an hour.) In light of Groundhog's day she decided to have Greg make a Ground Hog.

We placed the picture on the wall ( The wall of Fame) alongside Greg's other masterpieces. Here are a few of his other pieces of art.

Finding Resources can be Stressful!

Today I was in line at the Social Security Office. The lady sitting beside me started up a small conversation. She said she had a new baby a few months ago , and complications had arise. She was there to sign her child up for SSI. When she told me how they discharged her from the hospital with no place to go for resources I immediately began to empathize. I, too, went through the same dilemma.


I exchanged numbers with her and told her I would call with every Resource I have within our city. This ordeal inspired me to Blog today. To the left of the screen I have listed just a few of the many resources I have. I hope this can help other parent's ,relatives or caregivers who face similar situations.

Doctor Visit

Yesterday Gregory had an appointment with the ENT. Actually it was our pre-op appointment. Gregory will have surgery soon on his submandibular glands (Try saying that 3 times). Everything went well as expected. Gregory and his Dad showed their enthusiasm (or maybe not) in the picture below.

Finally Done!

I finally got the new blog page up! I am beyond excited! Now friends and family have somewhere to go when they want to know the latest with Mr. Greg.