Our life- Unscripted: July 2009

Jul 30, 2009

Benefit Information

On June 20, 2009, Jake was diagnosed with a rare genetic eye disorder called Familial Exudative Vitreoretinopathy (FEVR). With this diagnosis it was discovered that Jake has only “light” sight and minimal peripheral vision. On July 16 and 17, Jake underwent double eye surgery to reattach his retinas and remove fluid blockage with the hopes of allowing him the chance to see, at least, shapes and shadows. It will be another 4-6 months before they will know if the surgery was successful. What is known, is that Jake will need extensive eye therapy, glasses and most likely multiple surgeries throughout his life. FEVR is a progressive disorder with no known cure. The only thing that can be certain is that Jake will be fighting for sight for the rest of his life.Kim and Brent have been through so much in such a short time to do what they can to help their little guy.

On September 18 we are hosting a benefit in their honor to help raise money and ease the financial burden they are already facing and that will only continue to face as the years pass.Please join us at the Fridley VFW for a night of food, music and fun to show your support for such a great family.

The evening will include…
*Silent Auction
*Raffle*Live Bands
*Chili Feed
*Bake Sale
*Cash Bar

For those who have expressed an interest in donating items to the raffle or silent auction, please contact:

Daria Hashemi-Rad
daria.hashemirad@gmail.com
612-805-3237or
Lanee Josephson-Neby 651-785-8204

We would like to have the donations collected by Monday, September 7.Items can be sent directly to Daria at:

936 Mississippi StFridley, MN 55432

Jul 27, 2009

5 Months

Last week Jake turned 5 months old. WOW! Time flies. Here are some of the things that Jake is up to.

Jake started eating solids

Eats 5-8 ounces every 2-4 hours

Smiles at our voices

Sleeping pretty good. Still wakes up at least once.

Started eating cereal last month and this month he has tried Carrots, Apples, pears, sweet potatoes and loves them all.

Rolls over from back to tummy.

Can stand on legs for a long time with help.

Cracks up when we tickle him or make funny noises.

Discovered his voice and likes to scream just to hear it.

Still loves his swing and laying on the floor under his play gym.

No longer hates the bath. He loves to splash around now.

Wakes up between 7-8, takes a cat nap around 9 or 10 then down for a big nap at 12. He will go down awake for his nap and fall asleep on his own and sleeps 3 hours. Around 6 he will take another cat nap then bath at 7:30 and bed at 8.

Jake is doing amazing and even though he has problems with sight he is developing right on track for his age. He is a blessing and we thank god everyday for him.

Jul 22, 2009

Jake's surgery

As most of you know our little one Jake was diagnosed with a rare genetic eye disorder which left him almost completely blind. After seeing a retina specialist it was determined that surgery would be needed in order to give Jake the best chance at sight. There was no promise of sight for Jake but there was a good chance that with surgery, glasses and a lot of therapy there may be some sight. This is a progressive genetic disorder so this may be a life long battle for our little man.
Basically Jake's retina's were completely detached in both eyes preventing him from seeing. There was fluid build up between the retina and the lens blocking his vision. The surgery would remove the fluid and reattach the retina.

Last week we brought Jake to Children's hospital in St.Paul for his two surgeries.. One was scheduled for Thursday and one was scheduled for Friday. Jake and were going to be stay at Children's from Thursday through Saturday. We got to Children's Thursday afternoon to get Jake prepped for surgery.

Jake and Daddy getting ready

The surgery took about 2 hours. It felt like it was about 10 hours. Brent and I were nervous wrecks. Neither of us were prepared for what Jake was going to look like. The surgeon came out after the surgery and said that she was able to reattach the retinas but that she was not expecting the damage that was already done. His retinas were badly damaged. She said that it looks like his eyes have been like this since they were formed in the womb. She did give us some hope by saying that the retinas were attaching like they should. Unfortunately it would be 4-6 months before we Will know if the surgery was a success.

Because the retina is so sensitive there is only so much you can do in one surgery without pushing it too much and causing more damage.

Our baby boy after his first surgery

In his room after the first surgery

Grandma and Jake. I love how he is holding her necklace.

The second surgery went well. The retinas in this eye were the same as the other. One eye isn't better than the other.

After his second surgery.. He is starting a stuffed animal collection.

Night night sweet pea

I thought his little feet were so cute and sad all at the same time.

On our right home.. Finally sprung from the big house.

My new nickname for my little sweet pea is buggy

Brent's work sent this.. How thoughtful.

The past few days have been very hard. Buggy is very sore and is also teething. He refuses to eat and cries most of the day. The doctor and surgeon said that is normal for especially after everything his little body has gone through. We are just praying for strength and for a speedy recovery for our little man.

Friday we see the surgeon for a check up. I feel bad saying this but his eyes are not the best thing to look at right now. They look painful. I can't wait for my baby to get his beautiful peepers back. Next month he will be fitted for glasses and we start therapy soon.

Even though this is probably two of many surgeries we are thankful for our family and friends who without them we would be lost.

Brent and I would like to thank our family and friends that came to visit us in the hospital, those that called and those that just let us know they were thinking and praying for us. We are thankful for all the support we have.

Love you all,

Kim

Jul 13, 2009

Jake's benefit

Our friends and family are putting together a benefit for Jake. We are looking for donations for the silent auction and gift baskets. If you know of anyone or if you would like to donate please leave me a message. Anything would be greatly appreciated. We are working on finding a venue that would donate the time or that we could get at a discount.

Update on Jake... Tomorrow he has his pre op appointment with his doctor. His surgery is scheduled for Thursday on one eye and it will take as long as the doctor needs to do what she needs to do. The other eye is scheduled for Friday. Jake and I will be at children's hospital in Saint Paul from Thursday to Saturday. After his surgery we are not sure of all the details on recovery or if he will need more surgeries but more than likely he will need more just from reading about it online. We are hoping that he only needs these. After the surgery it is a long process of therapy. I will not be going back to work for some time because now my full time job is helping my sweet pea see. That is our number one priority.

Please keep our baby in your prayers and I will keep you all updated on how the surgery is going as well as the benefit if you would like to attend.

Thank you,

Kim

Continued

More pictures... Start at the bottom of the last blog post

Tony 4th of July

Gizzy hanging out on the 4th

My cousin Laura and sweet pea

Taylor and Chase 4th of July at the cabin (Mary's kids)

Taylor

Random pics. Jake after his bath

Daddy and Jake in there matching outfits

I'm so tired

Getting so big

Gizzy and his baby

One of Jake's favorite things to do

Naked baby

It's been a while

I really wanted to stop and take some time to post pictures of Jake and pictures of what we've been up to this summer. Even though we have a lot on our plate I want to make sure that I still keep up with our family blog. So decided today to sit down and post pictures from the past month or two. So be aware this is going to be a long picture post that won't all fit in one post. It's also a hodgepodge of pictures. Sorry for the lack of structure.

My Grandparents dog Holly hanging in Jake's stroller